Recovery After Stroke: Recent Episodes
Recovery After Stroke
Personality Changes After Stroke: How Ben Sautter Discovered His “Hyde” and Became a Better Man
For nearly a decade, Ben Sautter carried a story he didn’t fully understand. He was a respected superintendent for the City of Helena, a devoted father, and a man his colleagues trusted. He was also someone who, years earlier, had been convicted of drug trafficking and spent over a year in prison, a period he now describes without shame or remorse, feelings he says he simply didn’t have access to. “I never felt guilty about doing anything,” he told me. “I never had no shame, no remorse. I still don’t.”
Then, on a morning in 2017, Ben woke up with his left leg buzzing like an electrical current, from his hip to his toe. He dismissed it as sciatica, worked out to try to shake it off, and drove himself to a doctor’s appointment while slurring his words. By the time he reached his physician’s office, she recognized what was happening immediately: Ben was in the middle of a stroke.
What followed wasn’t just a physical recovery. It became the beginning of a profound psychological reckoning one that reshaped how Ben understood himself, his marriage, and the two very different versions of the man he’d been his entire adult life.
What Personality Changes After Stroke Can Actually Look LikeWhen people talk about the effects of stroke, the conversation usually centers on physical deficits: weakness, speech difficulty, mobility. Less discussed but just as real for many survivors are the personality changes after stroke that surface in the weeks, months, and even years that follow.
For Ben, this didn’t show up as a dramatic before-and-after moment. It took roughly six months before he began to notice his own cognitive shifts, and years more before he could name what he was experiencing. “I feel like two different people,” he eventually admitted to himself, a recognition that came into sharp focus only after his wife, Helen, described what she called his “Jekyll and Hyde” pattern: a caring, grounded version of himself, and a sharper, more reactive one that could surface without warning, particularly under emotional pressure.
Ben also discovered something else in the process something many survivors don’t expect. Before his stroke, he says he operated almost entirely on three emotions: happy, sad, and angry. It wasn’t until his wife introduced him to a “feelings wheel” years after his stroke that he realized how narrow his emotional range had actually been. That flattened emotional landscape, paired with a striking absence of guilt or fear around risky behavior earlier in his life, points to something researchers increasingly recognize: strokes can affect not just movement and speech, but emotional regulation, impulse control, and self-awareness, particularly when the affected regions touch circuitry involved in processing feeling and consequence.
The Unexpected Overlap With PTSDOne of the more striking parts of Ben’s story is how he came to understand his own symptoms. Watching a 60 Minutes segment on a military veteran with PTSD, Ben recognized his own thoughts, words, and behaviors reflected back at him patterns his psychologist at the VA had already been treating with PTSD-informed techniques, without Ben fully grasping why. “That’s when I realized my family suffered the stroke as much as I did,” he said.
This overlap isn’t unusual. Post-stroke psychological symptoms hypervigilance, emotional reactivity, difficulty processing what happened can closely resemble trauma responses, even in survivors who never experienced combat or acute crisis in the traditional sense. Recognizing this early, and getting connected with the right kind of psychological support, can make a meaningful difference in how survivors and their families move through recovery.
Turning Reflection Into Change
What makes Ben’s story remarkable isn’t just that he noticed these changes; it’s what he did with them. Nearly ten years after his stroke, and after years of separation from his wife, Ben sat down and wrote his memoir, Mr. Hyde and Me, in just ten weeks. “I called this therapy on steroids,” he said. “Writing this book was incredibly therapeutic.” The process gave him a framework to finally understand the dual nature he’d lived with since childhood, shaped, he believes, by an upbringing where feelings were dismissed, and risk-taking was treated as fun rather than dangerous.
“That guy that I was, that guy’s gone. I am not going to be that guy ever again.” — Ben Sautter
Today, Ben and Helen are reconciled. He describes himself as calmer, more deliberate, and a better listener than he was before his stroke, not despite the personality changes it triggered, but in some ways because of the self-awareness they eventually forced him to confront. As he put it plainly: “We would not be having this conversation if I hadn’t had a stroke.”
If You’re Noticing Changes in Yourself or a Loved OneIf you or someone you love has experienced personality changes after stroke emotional flatness, increased irritability, impulsivity, or a sense of feeling like “two different people” you’re not imagining it, and you’re not alone. These changes are a recognized part of many stroke recoveries, and they respond well to the right combination of professional support, honest communication with family, and time.
Ben’s full story, including his path through incarceration, his stroke, and the years-long process of understanding his own mind, is available in The Unexpected Way That A Stroke Became The Best Thing That Happened, where survivors share the tools that helped them navigate recovery, available at recoveryafterstroke.com/book.
If this show has helped you, you can support it at patreon.com/recoveryafterstroke.
This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
The transcript will be available soon…
The post Jekyll, Hyde, and the Stroke That Changed Everything: Ben Sautter’s Story appeared first on Recovery After Stroke.
Next of Kin After Stroke: When Your 19-Year-Old Has to Decide For YouKylie Ralston was 56, living alone in Sofia, Bulgaria, and getting back into shape after a divorce. Three mornings a week she ran. On the morning everything changed, she was doing a local park run with her friend Rebecca when she slowed to a walk, then tried to run again and couldn’t. “It was like the message wasn’t getting through from my brain to my legs,” she says. No headache. No fatigue. Nothing that felt like an emergency. She finished the run, registered her time, and went home. It wasn’t until she collapsed getting out of the car that anyone understood what was happening.
By the time Kylie reached hospital, she had suffered a left frontoparietal haemorrhagic stroke, a spontaneous brain bleed roughly 7.5cm across, with none of the usual risk factors. No high blood pressure. No cholesterol history. No aneurysm, no AVM. She was placed in an induced coma for four days. When she woke, she couldn’t move her right side, and she couldn’t speak.
What “Next of Kin” Really Means When a Stroke Hits AbroadKylie was a permanent resident of Bulgaria, not a citizen, divorced from her daughter’s father, and living on her own. When the hospital needed someone to authorise emergency surgery, there was exactly one person available to make that call: her daughter, then 19 years old, splitting her time between her separated parents’ homes.
It’s a detail easy to skim past, but it sits at the centre of this episode: next of kin isn’t a role most of us think about until a hospital needs an answer immediately. Kylie hadn’t nominated her daughter out of any formal planning process; it simply fell to her, because she was the only adult relative in the country who met the age threshold.
A 19-Year-Old Signing Consent-to-Operate FormsKylie’s friends contacted her daughter directly. She rushed to the hospital, and unconscious, unable to advocate for herself, her mother’s care now depended on decisions made by a teenager under enormous duress. Kylie’s first memory afterward is her daughter arriving in the ICU in a hairnet and scrubs, holding her hand, telling her she loved her.
It’s the kind of moment that rarely makes it into conversations about stroke recovery, because the focus so often lands on rehabilitation milestones: walking, speaking, returning to work. But before any of that, someone has to be legally empowered to say yes to surgery, and for Kylie, that someone hadn’t expected the responsibility for another few decades.
The Gap Between Acute Surgery and Real RehabilitationBulgaria’s acute care, Kylie and her friend Nicole Nott both stress, was world-class surgery within roughly two hours of the stroke, the kind of outcome her friends still describe as a miracle given the size of the bleed. What came next was a different story. In the public hospital, physiotherapy visits totalled two sessions. There was no speech therapy. After 14 days, still unable to move her right side or speak, Kylie was expected to go home. Her partner, Guido, refused to accept it, and the couple began privately funding rehabilitation themselves.
This is a distinction worth sitting with if you or someone you love is navigating stroke recovery in a country or even a region with limited public rehab funding: acute survival and functional recovery are not the same fight, and they are not always resourced the same way.
When a Friend Becomes the Rehab TeamNicole Nott, an occupational therapist and Kylie’s friend since they were 16, found out about the stroke through a message she initially suspected was a scam. Within days she’d cleared her schedule and flown from Australia to Bulgaria. What she found in the private rehab hospital was a caring but under-trained care team, kind staff with, as Nicole puts it, “no rehab expertise.”
Nicole spent close to two weeks restructuring Kylie’s room and routine around basic stroke rehabilitation principles: approaching from Kylie’s affected right side to address her spatial inattention, built-up cutlery to force use of her weaker hand, a balloon tapped back and forth for shoulder strength, word games layered on top for speech practice, pegs and curtains repurposed into arm exercises. She also pushed back hard against hospital staff who tried to stop her from helping Kylie transfer to a shower chair or toilet, at one point being told outright she wasn’t permitted because she was a woman. Her single goal before flying home: get Kylie toileting independently again, for dignity as much as mobility. Kylie called her from Dubai airport, mid-transit, to tell her it had happened.
Living With AphasiaFourteen months on, Kylie’s right-side weakness has largely resolved. What remains, she says, is the hardest part: expressive aphasia. “I can’t express myself like I used to.” It’s a small, telling detail of the condition that even the phrase “I can’t” is itself shaped by the aphasia; the words available to describe the loss are affected by the loss.
The Unexpected GainsBoth women point to what came out of the crisis alongside the hardship: Kylie’s relationship with her daughter deepened. Her circle of friends in Bulgaria proved itself in ways she hadn’t anticipated. And in the rehab hospital, her partner Guido proposed something; he told her he’d already decided before the stroke but simply hadn’t gotten around to asking.
If this episode raises questions about who is legally positioned to make decisions for you and whether that person actually knows it, it may be worth a conversation with your own family before a crisis forces the issue.
For a deeper account of navigating identity, recovery, and unexpected transformation after stroke, Bill’s book The Unexpected Way That A Stroke Became The Best Thing That Happened is available at recoveryafterstroke.com/book.
If this show has helped you, you can support it at patreon.com/recoveryafterstroke.
This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
Kylie Ralston: Stroke, Bulgaria, and the Friend Who Flew Across the WorldWhen Kylie had a stroke abroad, her 19-year-old daughter became her next of kin, and a friend flew in to help her recover.
Bill’s Book: The Unexpected Way That A Stroke Became The Best Thing That Happened
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Highlights:
00:00 Introduction – Next of Kin After Stroke
03:47 The Day of the Stroke
08:55 Rehabilitation Challenges in Bulgaria
16:32 Coping with Language Barriers
22:08 Reflections on Healthcare Systems
32:50 Setting Goals and Achievements
38:29 Family Dynamics and Support Systems
45:36 Finding Meaning in Recovery
54:44 The Impact of Caregiving
58:22 Reflections on Recovery and Gratitude
Transcript:
Introduction – Next of Kin After StrokeBill Gasiamis (00:00)
And one of my first horrible thoughts was, is this a dreadful hoax? Is someone, you know, is this some horrible scam? And it made me feel quite sick actually And then I rang her son who lives in Australia and he’s like, Yeah, I’m so sorry. I haven’t told you. Yes, it’s true, mum’s had a stroke.
Bill Gasiamis (00:16)
Welcome back to Recovery After Stroke. I’m Bill Gasiamis, and today I’m joined by two guests, Kylie Ralston and her friend Nicole Nott. Kylie was 56 living in Bulgaria when she suffered a left frontoparietal hemorrhagic stroke, a spontaneous brain bleed with none of the usual risk factors.
Nicole is an occupational therapist and one of Kylie’s closest friends since they were teenagers. And when she found out what happened, she got on a plane to Bulgaria to help. In this episode, we get into what it means to have a stroke far from home in a country where you don’t speak the language, and public rehabilitation funding barely exists. We talk about who becomes your next of kin when you least expect it, what it’s like to advocate for a friend inside a hospital system that won’t always listen.
And what recovery actually looks like 14 months on, before we get into it, if you want a deeper look at identity, recovery, and unexpected transformation after stroke, my book, The Unexpected Way That Stroke Became, the best thing that happened, is available at recoveryafterstroke.com/book. And if this show has helped you
And you can support it to keep me on the path of getting to a thousand episodes, you can do so At patreon.com/recoveryafterstroke
Bill Gasiamis (01:37)
Kylie Ralston and Nicole Nott, welcome to the podcast.
lovely to be here, Bill. Thanks for having us, Bill. Kylie, tell me a little bit about what life was like before the stroke. I was very active and I had a full life and I was working full time. and I was living in Sofia in Bulgaria, in my on my own, in my own apartment. I was renting, actually.
and I was getting back to fitness. So I was g getting I was running regularly. So two two or three times a week I was hitting the gym and hitting the tr the treadmill. And that had been happening for like a few month like six months or something like that. but before that I was very fit and active. What kind of work were you involved in?
I was a HR work. I was a ha HR leader and so I had my own consultancy I had a team of people that I’ve managed.
I had thirty five people, so and that they were people in Germany, Poland, Czechia, Portugal, France, so everywhere in in Europe, basically. Yeah. Wow, how how does an Aussie end up in Bulgaria with staff or clients in that many
countries? short answer is I came here with my family, so with my ex husband. and shortly after I arrived we separated and and ultimately got divorced. and I stayed on because my daughter is here. So she was only eleven at the time and I could just couldn’t leave her.
The Day of the StrokeSo you were living at home with your daughter? she was sharing her time between between us both. Yeah. got it. Okay. So both parents are there. So your daughter was going backwards and forwards. On the night of the stroke or on the day of the stroke, can you take us through that? What were you experiencing? Was there anything unusual that happened that made you think something was wrong? How did it go down? I was with my friend Rebecca.
And she was running ahead of me as she she was faster than me, so sh and she often often ran ahead of me. and I’d slowed down to a walk and when I started to run again or try to run again, it it was like the message wasn’t getting through from my brain to my legs. And I thought, that’s strange, that’s that’s really odd. ‘Cause I didn’t feel like tired or
anything and I didn’t have a headache and well stuff like that. and I just walked through the rest of the park run. And then when Rebecca saw me coming to the finish line, she waved me over and she said, come on, let’s go register your chip. and so I did that. and she said afterwards that
there was a little bit of fumbling with with my phone and there’s a there was a little bit of fumbling when I put my jacket on, but other than that, I just seemed exhausted from a run. do you recall after the experience of feeling exhausted from the run where you ended up? Did you need help?
Yeah, I do. So so she didn’t notice that I wasn’t talking because I n I’m normally an endless talker, so I she didn’t notice that I wasn’t talking. And she said that that that is one thing that should have alerted her to what was happening. but it it didn’t. And so I’d caught the bus to the park run and her husband was there and so he drove me home.
And I j I remember the journey home and when when we when I went to get out, I just couldn’t. And so and Mark came around to my side of the car and help tried to help me out and I just collapsed against him. And so then that so then they said, quick, something’s wrong something’s I don’t remember what they
They they said, you know, they basically took me straight to the hospital. Yeah. And also rang Guido, my now fiance, but my partner at the time. Uh-huh. So you you went from the run, attempted to go home, and then from that attempt to get you out of the car, actually into your home, it was pretty clear that that wasn’t gonna happen and you ended up in hospital. so
Did you guys drive to hospital? Do you recall that? Yes. Yes. We do how far is it from your home? it’s pretty close. I don’t know about kilometres or time, but it’s but it’s like ten or fifteen minutes. Yeah, so it’s not too far. But they didn’t know what was going on, of course. They just knew something wasn’t right and then they figured one of the best things to do is just get it to a hospital. You get to the hospital
Do you know what happens after that? Do you get admitted? do you get tested for anything? I suppose what I’m asking is when is the first time you realise that that you’ve had a stroke? When do they report that back? When I came out of the coma. So I was put I was put into an an induced coma straight away. so I I obviously don’t remember anything of of that. and but Rebecca’s told me afterwards.
so she’s filled in the f filled in the filled in the blanks for me. and by that stage her husband thought it was a stroke. So she’s he said he said to the staff at the hospital, we think she’s having a stroke. And so yeah. So how long were you in the coma, do you know? Has somebody told you how long it was? Yeah, four four days.
Four days, okay. And do you know what kind of stroke you had? Yep. I had a left
Frontoparietal hemorrhagic stroke. Wow, that’s a good effort. So you had a brain bleed. Yep. Do they know what caused it? No. It was spontaneous and I didn’t have any of the risk factors. So I didn’t have high blood pressure, a history of high blood pressure, but admittedly I’d hadn’t tested my blood pressure immediately before the stroke. but you know
That’s un that’s unlikely to be the cause. And I didn’t have a hi a history of high cholesterol. and so they just and I didn’t have an aneurysm and I didn’t have like what’s the other thing? The An AV AVM. AVM, yeah, I didn’t have any of that. And how old were you? Fifty six. Okay. So you had a spontaneous
Bleed in the brain. That happens. People do have that happen from time to time. And sometimes they don’t have any symptoms leading up to it or anything like that. and this is the bizarre nature of like there’s an unlimited number of ways, unfortunately, for people to have a stroke. Now, you woke up in hospital four days later. What kind of deficits did you have? I couldn’t move my right side and I couldn’t speak. Okay.
Now I’ve got an idea of well, I haven’t got an idea, but my mind immediately kind of says like if you’re in hospital in Bulgaria, that’s not a hospital in Melbourne. That’s not the Royal Melbourne hospital where no shit is unreal, like it’s perfect and it’s got the highest technology and it doesn’t matter how many things we can bitch and moan about the system being here like compared to Bulgaria, my expectation is that we’re world class.
Perhaps that’s not the case in Bulgaria. Would you agree with that statement? I would have agreed before and my my my expat friends here would have agreed before, but now we’re all saying maybe Bulgaria is better than we thought. That’s brilliant. Awesome. Okay, so
Rehabilitation Challenges in BulgariaAs far as like medical interventions and all that type of stuff, you felt like that was handled like any other world class hospital would have handled it. Yeah. In that in that s it in that stage it was. but there’s no like that was a public hospital and there’s no there’s no public funded rehab after.
or or very li very little. So so that’s where that’s where Australia is ahead. So when you knew you had deficits, was there any rehabilitation whatsoever? Did you get any of that while you were still in hospital? Minimal. So the the physio came to see me twice. and so that’s so that’s all and I got no speech therapy and stuff like that.
and but when I was discharged from the public hospital here and went and so they they expected me to go home from the public hospital. And so Guido said she just can’t like like what what the fuck? After how many days? After how many days, how long? Fourteen.
Wow, your right side was still offline and you still had problem. Yeah. Okay. So we we just paid for paid for private rehab. got it, right. Yeah. And how long were you in private rehab for? another like two months or something like that. Right. Okay, that’s pretty cool. So i even though you couldn’t access it publicly, you were still able to
Access a private now. Are you a citizen in Bulgaria? Not a citizen, a permanent resident. Okay. So do you have are you as a result of the fact that you’re a permanent resident and not a citizen, do you have different things that you are able to access because of your status? No. no. I’m it’s I have the same rights as a citizen. The only one the only right I don’t have is
I’m I’m not able to vote here and I’m not I’m not able to work in other EU countries. Got it. Okay. So that’s pretty traumatizing, the whole experience, and then to have to deal with overcoming your left side and your speech deficits after the two month mark, roughly where were you at where you where you are now? Because you kinda sound pretty good. Okay.
No, yeah. no and and the other thing the other thing that I must say about Bulgaria is I don’t speak Bulgarian. very very little. So that was a problem. Yeah. I can imagine, yeah. so maybe you can come in here, Nicole, and and talk about where I was at when you came to see me, because that was very very very early on in my
in in the private rehab hospital. Yeah, Nicole, tell me a little bit about what it’s like to receive a phone call to find out that your friend has had a stroke. I was absolutely hellish. the way I found out is I got a message through social media from someone saying, Hey, I’m a friend of Kylie’s and she’s in hospital in Bulgaria.
And one of my first horrible thoughts was, is this a dreadful hoax? Is someone, you know, is this some horrible scam? And it really, you know, it made me feel quite sick actually thinking this is that’s not someone I know. It does look like a name I’ve seen in Kylie’s kind of social media world. And then I rang her son who lives in Australia and he’s like, Yeah, I’m so sorry. I haven’t told you. Yes, it’s true, mum’s had a stroke. and I was kind of
beside myself because by training I’m an occupational therapist, but Kylie and I have known each other each other since we were about 16. and it was really hard to get the information that I wanted as a friend, but also as a health professional. I was wanting to understand what kind of stroke is it? Where is it? What’s the rehab? What can we do? How’s it going? And at that stage the information that I had was that
you know, it was really seriously affected the speech part of the brain and obviously the hemiplegia, the weakness down the right side and knowing that Kylie was right handed. so, you know, it’s the friendship part that your heart’s breaking and it’s also the therapist part that’s wanting the information to be able to, you know, reconcile it for myself, professionally what that was going to look like as a consequence for Kylie. Yeah, and you’re so far away, so you really can’t
do anything and kind of have to like take information second hand, third hand, and be kind of in a position which is really uncomfortable for, I imagine, a friend, but also a therapist, right? So as an occupational therapist, that’s not the information you work on. You work on actual facts, scans, reports, like a whole bunch of things. So are you also playing it out in your mind? Are you kind of
Doom thinking it, like are you how does it affect you personally? I think for me I was all I was really very conscious of not stressing other people. So like friends, family, because sometimes when you are a health professional, you know, you have knowledge and information and you know, you sometimes you you’re keeping that to yourself to some extent because you do know what can happen to people and you do know what consequences can be. So I was really trying not to ask too many questions of people as well.
but I was seriously desperate for information. And so I remember I’d gone to a party and I didn’t really want to go because I was actually, you know, upset and stressed for Kylie. And I did end up going to a party and during the party I was really kind of outside having a bit of a downer really by a campfire. but I got a phone call or a message to say that I think you’d
said some words, Kylie, and were kind of waking up. so you’re still in the acute hospital then and that you’d been able to move your leg a little bit, I think. Yeah. And you know, joy in that moment. And yeah, I felt very, very far away. And then
What happens over the next few days? Like do you guys continue to communicate somehow? Do you keep getting information? Are you being updated? Yeah. Yeah. I wasn’t able to get my into my phone or my any of my devices. So I wasn’t able to able to because I couldn’t remember my password, right? And so and and I tried like d
different ones and I you know I just got locked out. So and when I was able to get in then that made it it made it easier t because I was able just text short messages. So so Nicole and I kept in touch that way. and before
English-speakingBefore you came, Nicole, I think I was talking, but not not not as well as I am now. Yeah. So was it, Nicole, in your mind, you were always going to fly over to Bulgaria and beath your friend? Or did you guys have to work that out? Like what happened now? It’s so cool that you get to have a somebody in your corner that is also a
Fred, but also a medical professional in the exact field that you’re struggling with now. Right. Like how do you just drop everything and go overseas and be with your friend? Yeah, well, very grateful that I had an up to date passport. So that was that was a good thing. Kylie, it was interesting because the texting, like if I go back and look at that history, it’s like you can see the progress in the texts. So you can see that Kylie
was using kind of more single words and having struggles with spelling and putting sentences together. And then over time, you know, they became more fluent. but the thing that happened was that Kylie and I were talking and she was able to you know, she got some speech back and we were talking. And she was just saying about the rehab care that the the the kind of caring staff
just seemed to have no rehab expertise. So the physios were amazing. I think they were great. There was no active speech therapy for Kylie. I think we ultimately found an English speaking speech therapist but who still had Bulgarian as a first language. And there’s very few occupational therapists in Bulgaria, seems to be some expats. And Kylie was talking to me a jab about just
you know, really basic things like not being taken to the toilet. and that’s probably what broke my heart. It’s like I cannot leave her in bed, not being able to go to the toilet. I just can’t do it. And so I just said to my partner, I think I just need to go to Bulgaria. And luckily I’m self-employed. So I just kind of cleared my schedule, got on a plane and yeah, I was just
I suppose I’m incredibly grateful to have the skill. incredibly grateful to have the financial ability to do it. and yeah, and the skills to do it. And you know, you don’t always get an opportunity in life to do the right thing, or sometimes you don’t make that decision and later you think, Why didn’t I do X, Y, and Z? I try not to live my life like that. I try to actually do those things. So, yeah, I got on a plane and
basically arrived at the airport, got on a train straight out to see Kylie at the Rehope Hospital. You’re a real superhero. I’m very grateful to Nicole. Yeah. I rec you know, my story is kind of well, it has a similar kind of thread to it. I one of my best friends is a radiographer and he was a radiographer at the Royal Melbourne Hospital where
I was a patient for nearly two and a half years because I was in and out with a number of brain hemorrhages. I had three in total in the same spot, but over two and a half years, then I had brain surgery. And I can’t tell you how many scans I had, but being a radiographer, he was the one who was in the room taking the photos through the MRI. Yeah. And then he would come out.
And he would tell us what he saw in the RI, which was against the rules. that’s why I won’t name him. But but that meant that we didn’t have to wait a month to get our results and the the meeting for the results was just more of we’ll go through the process and and have the meeting. Yeah. And and and it was like and I regretted my life
when at school I used to throw his books on the roof of the canteen just to mess with him going to s to class late to get in trouble. and I’ve apologised profusely for that and thanked him every day for the fact that, you know, he was able to lend his well, you know, he was able to be in the room. He was able to have that conversation with us and he was able to ease our minds.
over that two and a half year period and then you won’t believe it. Like his daughter had an AVM at seventeen. And she went through that and and has recovered from that somewhat now in the last few years. and I got to be I mean I hate that I had to be this guy, but I got to be the guy that supported him through that really acute phase and
There is just nothing to describe what it’s like to be able to a repay the favor. and then but B, when I was in that situation to have somebody kind of well, you know, like put their arm around me and really walk me through every stage. Me and my wife and my family walk us through every stage of that part of it, other than intervening as a brain surgeon. But he was the one that put us in char in in touch with my brain surgeon. like
Everything that happened was just the most amazing experience to be able to be guided like that. And I know it’s a privilege and many people don’t get that opportunity. so I see Chris, I haven’t told him this in person. I see him as like a bit of a superhero, but he doesn’t know that. I’ve told him I love him in the way men tell each other that they love each other by s abusing him and swearing at him and telling him that the team that he follows is terrible and all that kind of stuff.
Reflections on Healthcare Systemsso you arrived in Bulgaria. take me from the airport to the hospital. Like what happens? How is that? Actually the flight was really good. Customs was pretty easy. There was some annoying folk in front of me who I wanted to punch in the face and tell them to hurry up, but I was just, you know, needed to to get there. Kylie’s daughter met me at the airport.
And then we got the train together out to the hospital. So, you know, obviously I’m seeing my first sight of Bulgaria. I’d never been there before. so not really taking a tourist route at this point. so went out to see Kylie. And, you know, when you just eyeball someone and I, you know, just thank God I’m here, I’m in front of her. Her she’d had a shaved head. she had some pretty spectacular surgical scars, a couple of very big scabs still on her head.
she looked skinny, she looked pale, she had started doing a little bit of movement and the hospital room was really kind basic and crazy. Her friends had funded a pressure mattress for her that didn’t exist. And some of these things I had been liaising with Kylie’s friends in Bulgaria about what could we do, how you know, what do we want to prevent? So we want to prevent anyone pulling on from.
Her weak shoulders and like don’t let anyone pull her by the arm. this is how I want, you know, to help her with posture in bed or in sitting. and you know, like speaking in single kind of actions at a time and just take your time, say something, wait, wait, wait, wait, wait. Just allow Kylie’s brain to, you know, take that information on board. Don’t speak for her. and when I got there, it was really clear that.
She had an inattention to the right hand side as an effect from the stroke. So then I was a bit of a ball breaker, rearranging the whole room. No, no, no, no, no. Where, you know, everyone come from the right, everyone sit on the right. no cutler, you’re not allowed to have your phone in your left hand, you’re having your phone in your right hand. I’d taken some things with me from Australia to Bulgaria that I thought she might need. like some built-up cutlery, because I wanted her to use her right hand to feed herself. I took a couple of
kind of activities that I thought we could do to look at some retraining for the right arm. what I’ll still bring with me, try to remember now. Benjamin. So yeah, just try kind of going into early stroke rehab principles. Yeah. Did you go there well you went there as a friend. But when you were there, were you able to be a professional and also have a conversation with the local team?
Kylie and I laughing. Do you want to tell that story, Kylie? Which one are you thinking about? Where I got told off. No, I don’t remember that. well, Kylie was in act like, you know, there was still quite a lot of weakness, but she was also so determined for her own rehab. And in the system there their carers really don’t have a rehab focus. They have a
I’ll provide you a meal focus and I’ll occasionally do some cleaning and I’ll occasionally change the bed linen and but really not a rehab focus. So I’ve personally found it quite easy to help Kylie to like stand move. And so the very first weekend I was there, it was a long weekend and what I didn’t realise later was that they were actually quite understaffed.
Which worked in our favour because I was helping Kylie to get onto a shower chair, taking her to have a shower, us taking her to the toilet, because prior to that time they were just, you know, using pads for toileting because Kylie couldn’t stand up or move on her own. And because I’m trained, I found it very easy. She’s a lightweight person and she and I just work together and I could do that. I think it was the Tuesday,
person who I refer to as Nurse Ratchet. remembering now kind of intercepted me bringing Kylie back from the bathroom to her room and just like, nope, nope, nope, nope, nope, nope, nope. What are you doing? Stop that, stop that, stop that. and you know, she and I are having a bit of a a discussion. And basically she’s refused and I’m allowed to move Kylie. So Kylie is sitting out in the corridor. I think I’d luckily kind of covered you up for privacy.
and she’s like, No, you’re not allowed to move her. I’m gonna go and get the physio. I think at least forty minutes went by and then she comes back, well, okay, and I said, Look, I am a trained person, it’s easy, it’s safe. no, I’ll think about it. And then after I think another fifteen minutes she pushed your chair into the bedroom. And then I think it was probably another fifteen minutes where she just decided to move Kylie herself at that point.
even though that was out of policy and the physios had to do it. And then it was all this discussion with me that you can’t do it. And in the end it was you can’t do it because you’re a woman. Not strong enough, you know. so yeah. Then Kylie and I kind of would go on clandestine missions because again, from a rehab point of view, being able to stand transfer, it’s putting all the weight through the leg, it’s giving feedback to the brain. I really wanted to make sure Kylie’s bladder and bowel were gonna work properly.
And you know, sitting in bed and that’s just not ideal. So then Kylie’s like, Nicole, I want to go to the toilet. I was like, I’m banned, I’m banned, Mother Nurse Ratchet, I’m not allowed to take you. And I was like, shit. So I would go on a little mission, go look down the corridor, make sure she was nowhere to be seen. And then I quickly stole the shower chair and then I found a bucket. And so Kylie and I were doing
secret Wii missions in the bedroom. until w on one of our missions I just hadn’t quite got the bucket in the right place. And so then I it was also then later on a cleaning mission. So it was it was a pretty crazy environment. yeah, just for that lack of t whole team approach to rehab. Whereas, you know, in Australia the nurses would all be rehab trained. They would be transferring someone
physios would come in, speech would be coming, OTs would be coming. So I was kind of desperately trying to convince Kylie or to get her rehab to a standard where she’d be able to come back to Australia to get some more rehab. You know what’s good about this conversation other than the hilarious nature of it also is that
I as an as a person who hadn’t had a stroke before my hadn’t known anyone who had a stroke before my experience, if I had come across somebody who had had a stroke, I wouldn’t have known what to look out for and what to say to support them in a situation where perhaps something was being neglected. Because I don’t know what I don’t know. I’m not a professional, right? Just like those nurses and therapists that weren’t specifically trained.
Yeah. In certain things. I mean, you may as well be not only talking a different language, but you may as well be making it up as you go because as far as they know, now this is what we do for stroke patients. This is how we handle that. is it a lack of understanding of what r stroke rehabilitation requires, or is it a lack of resources, or is it a little bit of both? Do you feel in Bulgaria when you were there?
I think I think it’s a lack of of all all of that but it’s the lack of maybe money. So it’s a lack of training. So th there’s there’s not enough there’s not the the nurses or the orderlies or whatever they’re called here, are are aren’t paid very much. So they so
And t just like, even though I was in a private rehab hospital, so you would have expected that more. It’s you would have expected more, but I just think that they just don’t have the money to to train those people. Yeah. it wasn’t really a role, was it, Kylie? Like they really were more like housekeepers in a sense. It was more like cleaning a meals.
I have to say the physios were excellent. and a lot of the physios had good English as well, which was for your rehab was so important. because again a lot of the carers they would come into the room and you know, again, just from a speech therapy point of view, in Australia, say if someone came into the room who was the person who did the menus or filled up the water bottles or the cleaners, Kyler could have spoken to all of those people and had
incidental communication the whole day in English. But because of all of those p incidental people coming in didn’t speak English, you know, reasonably in Bulgaria. it just for me, I was worried about the lack of just exposure to English language as well. So not even speech therapy, just incidental language through the day. Which is very helpful and people don’t realise how helpful it is to be able to speak to a nurse about how you’re feeling or what’s happening.
Yeah. And all the usual stuff. And Kylie’s chatty and friendly and she would have just been having conversations galore, but it just it it it couldn’t be. Yeah. Yeah, it’s another another barrier. so you know when you go overseas, it’s your friend and you’re a professional. How do you handle that? Because you know, like are you emotional? Are you trying to put a lid on it? Are you allowing yourself to
Gonna be emotional. How does that work? We had some killer laughs, didn’t we? I mean, I’m a joker anyway. And so, like the first time Kylie got to do a poo on the toilet, I just did a poo dance for her. So I I felt half my job was you know, cheering her up and keeping it light and having fun and chatting about stuff we would just always chat about.
as well as doing as much rehab because it was very exhausting because, you know, p after a stroke, it’s very fatiguing. you know, so to Kylie was really tired and needed lots of rest. So and because I had just you know, obviously dropped tools to go over quickly, I was just working sometimes. So I just have my computer and if Kylie was asleep I’d just stay with her and and her partner Guido as well, who was there with her as well. So just, you know, emotional support wise. But
Yeah, I do some work. And I stayed in Kylie’s apartment. So I w was I just stayed at her place and I I train out to see her each day at the hospital. W how many hours would you spend in hospital with her? What do you think, Kylie? you would often arrive at like ten in the morning and you wouldn’t go till like five in the evening or six in the evening. Yeah. So technically visiting hours kind of finished at six.
So I just try and stay most of the day. A full shift. Yeah. Yeah. Unpaid. Unpaid labour. Slave driver. Yeah. yeah. But nah. That’s what friends are for. I very what I very much wanted to stay the whole day because I did really, really wanna like especially the toileting thing. I just really wanted that.
Setting Goals and AchievementsI had this bit of a goal for myself for Kylie that she would be able to take herself to the toilet before I left the country. So just from a dignity point of view, from a mobility point of view, transfers, you know, bladder control. So yeah, that was one of my big goals. And she rang me when I was in transit at Dubai Airport on my way back to Australia and said, Nicole, I just took myself to the toilet. Wow, that’s cool. Yeah. Yeah. And and I was having
physio two physio sessions a d a wi a day. So I was having other than Nicole. So I was having like about one session about of about an hour in the morning and one session of about an hour in the in the afternoon. Got it. You Kylie seem like pretty mm chill, pretty calm. how are you handling it though, emotionally? How’s the aftermath
Treating you because there’s a little bit of you know, there’s all that acute stuff. It’s awesome when your friend is there, but then your friend goes home, right? So how how does that transition kind of happen? Yeah, I might start crying. because I’ve just recently spent seven months in Australia. So I I went to Australia in October last year and I came back in just in May.
and I had more rehab there. So I had I had student led rehab at at first and then I got in got accepted into Birch, which is the brain injury rehab community and home in Ad in Adelaide. so that’s that is is a whole team of people. So I had I had physio and I and a occupational therapist and a
a e exercise physiologist and a speech therapist and stuff like that so I th that’s really good. now the most frustrating part for me is the aphasia so I I can’t I can’t express myself like I used to. Yeah. You know what I love about
interviewing people who have aphasia is when they say I can’t in a sentence to describe something to me it triggers the part of the condition which doesn’t allow the words to come out. It’s so interesting. That happens so so often. And it’s just a for me, I noticed this I’m saying it just from a perspective is maybe I can’t is not the right word. I don’t know. You might remember this, you might not, but maybe I can’t is not the right word. Maybe the right word is
Something that helps you get to the word that you need to get to. And okay, now that’s just me, the uneducated stroke survivor on a phasia guy. Like I don’t know about that. But it’s so interesting, it happens every time. but then Nicole goes home, you go home, your partner is kind of now taking over the caregiving role, and you still have some deficits. phage is one of them.
what about your right side? How offline was it? I I also moved in with Guido after the after the stroke. So so that was that was a has was ha was and has continues to be a challenge because we’re still getting used to living together because we weren’t living together before. and I was very in very independent before.
And I was living in Sofia and he and he and I now live in a in a village. So I live in in a village just outside of Sofia. And I’m not driving yet. but I was medically cleared to drive in Australia before I left. So I’m going through the process here. so anyway, all of all of those things together make it very challenging.
don’t get me wrong, I I l I love him, but but you know, and and I d and and I made that decision because my apartment is was was on the fourth floor and th there was no lift. Wow. Yeah. So back to your question. When I was when I was when I came here,
when I was discharged, I continued with as an outpatient and and the physio continued to come at home twice a week. So I was having more physio maybe like five times a week. and like it were ha had started to come my right side had was all already
back online, but I would I was just working on building strength and
and I would get still very tired. Yeah. And did your daughter end up coming to live with you as well? No. but she she at the beginning she she was my next of kin. So at the ripe old age of nineteen, she signed the consent to operate forms. yeah, so that was that was very difficult for her.
I didn’t know that at the time, obviously. but yeah. And did that happen, did she become your next of kin because your former partner, her dad, and you had separated and then his that role wasn’t gonna be his anymore. It’s just passed down to the person who was the closest to you. Like how did that happen?
Family Dynamics and Support SystemsWe’re divorced. I I’m divorced from her dad. Yeah. So he’s definitely not my next kin. Right. So that ha changed after the divorce and she was the only person you could nominate because she was over is there an age limit to the next of kin? Eighteen. Yeah. Okay. So she had hit that criteria, you nominated her and then at nineteen she got to make a decision.
Which she never and you never would have expected ever for that to be a thing. I didn’t nominate her, it would just happen. So I was I I was unconscious at the time that she signed those forms. So yeah. So my friends actually contacted her. and she she rushed to the hospital. so it was all under duress. It was like this is what happened to your mum, you’re her
Next of kin, whether you like it or not, you have to decide. Yeah. Far out. Okay, that’s pretty full on for a 19 year old. Yeah. Yeah, seems like she did a good job. How did she handle this whole mum’s not well situation, this stroke thing? Like how did she deal with it? she was very good. my first memory actually is of her
coming into the ICU with with the with the whole, you know, the whole like the the hairnet and the mask and the and the and the what’s it called the scrubs. Scrubs, yeah. and she held my hand and said t that she loved me. so that was pretty special.
And incidentally I have an a another memory of Guido coming into the ICU as well and singing singing to me. So he he said that he said that I always wanted him to sing and he refused before. And so did did I want him to sing to me now? And I squeezed his hand or on the on the left he’s was holding my left hand and I squeezed his hand and so he knelt down beside my bed and started singing.
Wow. Can he actually hold the tune or is he hard to hear? Yes, see he’s he’s very musical. Okay. Thank God. If my wife had asked me to sing a w if I had asked my wife to sing, it wouldn’t have been a good experience at all for either of us. Yeah, he was he was a busker in i in his younger years. Yeah. and now he decided to come good. Fair enough. Well that that’s important. You know, things like that are important. It lightens the the mood and it makes Yeah.
You kind of feel like your family’s around and that you know you know, maybe kind of things might be all right. Like it gives that glimmer of hope. Is that how you received it? Yeah, I did. yeah, but I’m also very, very determined. So I’m a I’m a very normally very strong woman and so everyone said to me that if if well not to me, but
w we had a we had a group WhatsApp chat so and I was added to it later and everyone said in that that if anyone can get through this, Kylie can. Yeah. So you know when you’re told you’ve had a stroke, you wake up with all the deficits and everything. Are you like how do you take it? I woke up, couldn’t use my left side. I I did not for one minute.
It did not cross my mind like for one minute that this is not a good thing. Like I mean, clearly I wasn’t able to move, etcetera. But it never kinda went a lifesaver, I’m fucked. Like I never had that happen. Me as well. yeah. I I’d I’ve never thought that. I don’t know whether I even thought that
It was n like you said, that was not a good thing. I just put one foot in front of the other and or not literally, but the Yeah. Metaphorically. Yeah. Metaphorically. so one foot in front of the other and just got on with it. Yeah. Nicole, like you come across in your work, you come across a lot of different versions of patience, right? Like you get people who
might just be by design more negative to a bad experience and then people that are half class full to a bad experience. Just from a professional perspective, what’s the difference like when you’re trying to rehabilitate somebody that has kind of that different mindset?
From perhaps what Kylie and I described.
Yeah, I mean I’m probably in the last half full camp as well. So as an OT, I suppose we always meet people where they’re at. because everyone is a combination of their past experiences, aren’t they? So and cultural things, like there’s a very significant cultural differences in how people respond to pain or disability and expectations of kind of family and I suppose cultural expectations in Australia are even about
you know, what what what should be publicly available. So, you know, from an expectations point of view, I think a lot of it is based on, you know, previous experience. So as a therapist, we’re obviously there to support, you know, emotional well being, physical well being, and try and find the things for people that connect with them. So meaningful, like OTs are our absolute core is meaningful occupation. So how do we find something that’s meaningful to that
person that we think is going to get them from kind of, you know, here to there and it’s gonna be very different different motivators, you know. Kylie is probably, you know, very self motivated as described. Sometimes it’s about people really have a d strong desire to get back to work, or people have a really strong family structure that they want to be able to get back to do something with their family. So
finding the way or the thing hopefully that’s going to motivate them. But we certainly work with people who you know, have a high level of distress from what’s happened to them and and on an ongoing basis. One of the things I’ve got a little quote on my desk that you can’t see here, but it says, I’m still me, just a different version of me. And it’s what someone one of my clients told me recently who has MS. and often we find need to find the new version of someone.
and the new meaning for someone if that, you know, needs to happen. So that’s our great challenge, I suppose. That’s a big job, especially very early on when identity is so tied up into who they were literally days ago. You know, like a week ago. The mobile person, the working person, the money making person, the father, the mother, the whatever.
Finding Meaning in RecoveryAnd then, you know, you’re dealing with a physical crisis, the existential crisis, the identity crisis, like you’re dealing with it all in the one moment, and you’re trying to get them to sort of see, well, you know, you’re still you and how we’re gonna move forward with the still you person, like we’re still gonna move forward with that person. And then later does come an adjustment of what that you looks like.
did for me like it’s a massive adjustment into what me looks like. But my identity wasn’t so much tied up in a one label specifically, although, you know, I s I was the person who felt like they needed to be the main breadwinner, you know, that you know ran a business that did all these things. I I had a big strong identity. But I think one of the things this is going to sound weird or might even sound logical depending on
like w who you are and why you’re listening to this podcast. But for me, the fact that my brain went offline was a really good thing because it and that allowed my emotional side to come to the fore. Like it really enabled me to see things with a different intelligence, you know, and access part of me that my emotional intelligence perhaps that I hadn’t that I perhaps suppressed previously, you know, and just battled through things.
And that kind of allowed my identity to come with me, it allowed me to leave some stuff behind and allowed me to
bring into my identity this emotional side of me, you know, which who cried, who got excited about new and different opportunities, you know, that my head didn’t convince me out of. You know, so there was a lot of silver linings that I didn’t I wasn’t able to iterate back then. I wouldn’t have been able to tell you that it was a silver lining. But now and a few years later, after it all happened, I was definitely able to talk about those silver linings. Kylie
Do you you’re fourteen months or so out, right? So maybe you’re not there yet, I don’t know. But are there some silver and I know a hundred percent Nicole was one of those silver linings, I get it. but do you see some silver linings in this whole saga? Yep. I do. my relationship with my daughter got stronger. Yep. So that was all s that was
definitely a silver lining. and you know, I I’m was very grateful before, but it cemented how g how grateful I am for my circle of friends.
Yeah. Kylie’s friends were amazing. Yeah. Your friends were amazing. Yeah. Yeah. Yeah. Big family still in Australia is is there a big family in Australia, Kylie? Not not a big one, but my mum and dad are still still alive. So they’re they’re in Melbourne. and my sister is in on the Gold Coast and my brother is in Melbourne as well. Yeah. And my and my son is in Adelaide.
Okay. So you still have some family here, but then you were able to create a community in the years before the stroke in Bulgaria. Yeah. you you were doing it a little bit tough after the stroke. Yeah. Correct. Yep. So that’s spot on. Did you Nicole tag team with some of those people as well? Yeah, so Kylie’s friends were beautiful and they were looking after me too. So
When I was in Bulgaria, they were looking after me, you know, giving me dinner and what have you, and kind of giving me emotional support as well. And I think they were grateful that I was there from a skills point of view, like they were doing a beautiful job of supporting Kylie emotionally. But and I did kind of train them up a little bit in in some rehab as well, you know, how to help with approaching from the right and how to communicate and also just even doing some activities.
Kylie and I had the balloon and we were tapping it back and forward to each other for strengthening up the right arm. And then we’d play some kind of word games as we were doing that for some speech therapy. So I was educating her friends around that kind of stuff. But the other thing, Kylie, that you and I have spoken about is, you know, after the stroke is knowing what’s important and how to let some sh shit go that would have been, you know, annoying or you know.
focus on something and now it’s just you you just know it’s just not important. Yeah. Being able to just let crap go. Correct correct. and the other silver lining is that I got engaged. Yes. Did he propose soon after? Yes, in the in the rehab hospital. what a romantic Yeah. But he but he said that he’d
already decided before the stroke that he wanted to marry be ma be married to me. So he just hadn’t got around to asking me yet. Yeah, fair enough. That stroke has a way of interrupting people’s plans and the things that they think they’re gonna do. so Nicole you normally treat your patients. They get to a stage. Usually they’re a lot
better than they were when they first met you. And part of what you do is you send them off into the big wide world like a kid. I’ve grown you know, I’ve raised them, you know, like they know how to comb their hair now. And you kinda send them off and it’s kind of bittersweet, I imagine, but also a very important part that the people who you’re helping get better actually go off into the world on their own.
And stop needing to be supported by you. I know there’s some people who need more support and that continues for longer and some people who don’t get enough and it and it’s never enough. But what’s it like knowing the job is not done, but you still have to leave and go home? that was heartache. I mean, Kylie and I both balled our lies out. it was a long flight home. Yeah. Yeah, it was a long flight home.
with lots of reflections. I suppose the good thing at that point was Kylie was easily able to speak on the phone or message each other. So and also, you know, I think at that stage maybe I got to see the brain scan and I was just like, my god, how have you even survived this? ‘Cause I think was it about a seven centimeter bleed, Kylie? Yep. seven and a half.
Yeah. To be precise. It truly felt like a a miracle. And again, full kudos to the surgeons in Bulgaria, truly, for that acute care. Because I think Kylie, I feel like you were in surgery in about within about two hours or something after the stroke, which is phenomenal. And, you know, your friends really saved your life. taking you straight to the hospital and prevented like, you know, more serious outcomes from the stroke. So yeah, so for me,
I was proud of myself as well. and I, you know, I like to live my life by thinking I can look myself in the mirror. And I felt like I can really I’ve got a tear, really look myself in the mirror. Yeah. Doing the right thing. Yeah. Yeah, yeah. Yeah. You came to the need of somebody who was in need and needed specifically not only your love and support as a friend, but also your skills. Like you had the complete package for them at that time.
How long did you end up staying in total? Was I ra away about just under two weeks probably with the flights and everything like that? So yeah. so yeah, leaving was leaving was horrible. But the goal of being able to go to the toilet was met. and also just the skills for, you know, skilled up a few other people and Kylie, you know, had her good networks.
I also went out to Kylie’s property out in the village to have a look at any home modifications. So that was another kind of OT type role that that was done. and she’s got an amazing property out there, but it is kind of needs a bit of love and so that was also just reassuring her partner too, like reassuring Guido that no, look, Kylie’s got this. There were a few times where it was like, Nicole, I don’t want her to do this. Like I’m like Guido, she’s safe. She can do it.
She’s got sitting balance. She’s okay to sit over the side of the bed. She can wiggle sideways. But he was anxious. And so again, part of my job was to reassure him to make sure that he let her do things. and didn’t step in too quickly. And so as an O T, we’re all used to like sitting on our hands and taking time and letting people struggle a bit. And it was hard for him to let Kylie struggle. So to just encourage him to let her struggle a bit so that she could do it herself and just wait. Just
take the time, especially with communication. so yeah, I I kind of obviously knew there was a lot more rehab to be done, but I also had seen Kylie’s determination and that, you know, she kind of knew what to do. and and so that was I I was grateful again for that. Kylie, what was it like when your friend had to leave? I was heartbroken.
The Impact of CaregivingI felt like she was a lifeline and I felt like that that had been cut because obviously she speaks English and obviously like
Obviously we have a really good relationship. and I felt like I was in a like how do I describe it? In a in a sea of
not n of people not understanding. So yeah, not my friends, but the hospital staff, basically. So not the not the physios. Like Nicole said, the physios were exceptional. but, you know, just the hospital staff. Yeah, just generally speaking. So did you feel like she had put you on the right path? Were you more confident with
kind of where she left you as opposed to where you guys started and was that enough to kind of give you the foundation for what you needed to take responsibility for when she left? Definitely. yeah, definitely.
Yeah. Man, w what a kind of interesting whole situation. You know, if this was fifty years ago, there’s no way anyone’s going anywhere to help anyone with anything. you know, like your hospital s experience in country like Bulgaria after what they’ve been through would have been completely different. You know, your s the chance of surviving telling your story is probably s you know, very much
decreased. I know this is gonna sound weird, but like it’s never been a better time to have a stroke in in most of the world. Like let’s face it. the the possibilities are just endless. I’m a miracle from all the medical professionals that put all their time and effort in. I am eternally grateful to my occupational therapists and physios and surgeons and people who invent X ray machines and people who make C T scanners and
The plastic bottles where drips go in, like every single thing is just an an absolute miracle of God or medicine or science or I don’t care what, like whatever you want to call it. And it just to me, it you know, here’s a really terrible situation and here and and but look at all the amazing things that came out of it. Somebody from the other side of the planet to be able to come over and intervene in that way, train people up. Like, man, it’s the
Perfect like feel good story, you know. Everything’s going okay, things turn shit, and then something good comes out of it and yeah hopefully there’s more good to come, you know. Like, man, it’s just an amazing experience. I just feel really privileged to be able to hear it and share it further. No, not not not me, personally.
but now that you say that I will s I will think about it now. the most thing that that Nicole and I reflect on is, you know, like like we’ve already said, how good was that my friends got me to the hospital quickly? How good was the the surgeons the surgeons
because it could have all gone wrong. or gone gone a different way. so that’s the stuff we reflect on more. and just just like my amazing recovery.
Reflections on Recovery and GratitudeBecause I recovered so quickly and so well, like I’ve thrown everyone away here. So so my new my neurologist, my my physios, ever everyone here is like well, back then was like really surprised. So we it’s when I first walked into the n neurologist, she said, like, wow,
No one expected you to recover that quickly from such a severe stroke. Yeah. That’s such a good outcome. I like to I like to think that those things wouldn’t have been possible without your most amazing superhero friend Nicole. Nicole, your final thing I’d like to kind of run by you is that your whole career you’re working towards making things better.
Yep. Like for people who are going through all really difficult times. have you had you ever dealt with a family member who needed your intervention or family friend or someone like that that needed an intervention with your specific skills before this? man. yes. So when I was quite a young therapist, probably in my early twenties, my dad told me that his
One of his like great aunts or cousins elderly relative had had a stroke and she was in hospital and I didn’t really know her. Like she wasn’t someone in the family that I I had knew had known. And I said to Dad, I’ll go and visit her in hospital. And and so I went to the hospital and I found out she was in this room and I walk into the room and there were four people.
And I see this gorgeous little old lady who is all crumpled in her chair and squashed and nearly falling out. And I I just walked in and I was horrified. And I just walked straight over to her. And I just said, look, can I help get you more comfortable, get you into a better position? And then I realized it was it was my own relative. and I said to her, I’m Nicole, I’m John’s daughter. you know, dad’s asked me to come and see you. And and she just said the most cutest thing ever. She said, when you walked into the room.
You just look so lovely and I hoped you were here to see me, but I I wouldn’t have known what I could have done to deserve that or something something dead cute. anyway, she’d had a very dense stroke and they were basically saying that she wasn’t a candidate for rehab and that she should go straight to a nursing home. And her daughter was a nurse.
And she said, Nope, Mum’s not going to a nursing home and she ended up taking her home and I used to go every night after work and do rehab with her. she ended up being able to walk quite with a pretty awkward gait and a and a stick. but she got back to, yeah, walking and living at home and I just again always think that if she didn’t have her daughter, the nurse and myself, she probably would have ended up not not walking. Yeah, being in a nursing home.
It’s not that quality of life. So there’s people who definitely go through that. And what I love about you sharing that part of the story is there’s people listening and they’re paying attention and maybe they haven’t been given the amount of therapy that they feel they deserve or need. And maybe that’s going to trigger people to go, you know what, stuff this, I’m gonna find a way to get more therapy, I’m gonna ask. I’m gonna hassle some people, I’m gonna be a pain in the butt to some people, I’m gonna do more.
for myself to get me further. I love that you shared that part of the story. That’s kind of the unique experience that a that a a seasoned occupational therapist can kind of impart on us who are early on in the recovery about like how you need to advocate for somebody or yourself for more physical therapy. And and even if you
Can’t access that people listening and watching YouTube channels. Go to YouTube. There are a ton of awesome therapists on YouTube showing people how to do exercises at home. Yeah. And I mean, I just took some really basic things. We s I, you know, stole some things out of Kylie’s flat to take in. And Guido’s son gave me some toys and we use those like stacking things to, you know, do rehab with Kylie’s hand. I took some pegs from her house and we made
an activity of pegging up the curtains to do shoulder and arm rehab. So you can often do a lot without, you know, complex equipment as well. Yeah, brilliant. Well, Kylie, what a friend, huh? Yes. Yeah. As if she wasn’t a good enough friend already. Yep. I really appreciate you guys reaching out, joining me on the podcast, sharing the story from
your unique perspectives. it’s so good to get that kind of a story and have it told in two perspectives, in one sitting. I wish you both well in your future work and Kylie in your recovery. And I really I I’m very grateful to have been able to have this conversation with you both. I’m just gonna say you’re my superhero, Kylie, seriously, the effort and the rehab.
yeah, do not want this about me. yeah, seriously. Thank you. That means a lot,
Bill Gasiamis (1:03:44)
Well, that’s it for another episode of the Recovery After Stroke podcast. What stays with me most is how much of Kylie’s recovery came down to the people around her. A nineteen year old daughter signing consent forms she never expected to sign, a friend who dropped everything, retrained hospital staff, and fought for something as basic as Kylie’s dignity in using the bathroom on her own. If this episode raised questions for you about who’s actually positioned to make decisions for you in a crisis,
It might be worth having a conversation with your own family. And if you want to hear another Stroke Survivor story of navigating a stroke far from home, go back and listen to Kristen Taylor’s episode Stroke Abroad. If this episode meant something to you, share it with someone who needs to hear it today. And if you want more on rebuilding identity and finding transformation after the stroke, my book.
The unexpected way that a stroke became the best thing that happened is available at recoveryafterstroke.com/book. If this show has helped you, you can support it at patreon.com/recoveryafterstroke. I’m Bill Gasiamis. Thanks for listening. I’ll see you in the next episodnineteen-year-olde.
The post Kylie Ralston: Stroke, Bulgaria, and the Friend Who Flew Across the World appeared first on Recovery After Stroke.
How Making a Stroke Recovery Documentary Helped a Former One-Percenter Reclaim His Life
Shayne DeMarce spent most of his adult life defined by physical strength. He rode Harleys through the Canadian Rockies in every season, ran a plumbing and heating business, and had recently begun prospecting with a one-percenter motorcycle club drawn there, he says, by the brotherhood at a time when his wife’s cancer diagnosis and a failing business were pulling the rest of his life apart. Then, on a low-speed group ride at under 20 kilometres an hour, his back wheel slid on loose gravel. To avoid landing on a fellow rider, he dove off his bike into a ditch and broke nine of his twelve ribs, his collarbone, and his scapula, punctured a lung, and tore his aorta.
What nobody caught for another thirteen hours was that he’d also had a stroke.
A Low-Speed Crash With High-Speed Consequences
Shayne’s accident is a reminder that the danger in a fall isn’t always where it looks like it is. He walked away from the crash site convinced his injuries were broken bones, painful, but familiar territory for a man who’d spent a lifetime playing football, doing judo, and dirt biking. It wasn’t until he was in the truck heading to hospital, feeling suddenly and inexplicably worse, that anyone suspected something else was happening. By the time doctors in Edmonton confirmed it was a bilateral carotid artery dissection that had cut off blood flow to his brain, the left side of his body was already gone.
He spent five months in hospital and ICU, then seven more in inpatient rehab. Non-weight-bearing for most of that time, he had to relearn how to exist in a body that no longer matched the identity he’d spent decades building.
Losing the Body He Built His Identity On
“I was a physical guy,” Shayne said. “My job was physical, everything about me was physical. So it wasn’t just my identity; it really was who I was.” For a man whose sense of manhood was tied to strength, work capacity, and being able to hold his own, losing the use of half his body wasn’t just a medical setback. It was, in his words, “very humbling.”
The turning point came from an unexpected source: a blunt question from the principal at his rehab facility’s education centre. When Shayne told her his only goal was getting his body back, she asked him plainly, “So what if you don’t get your body back?” It’s a question that stroke survivors and their families rarely get asked directly, and it’s often the one that needs asking. Shayne describes it as heartbreaking in the moment, and something he’s since come to be grateful for.
Why He Turned to a Camera Instead of a GymThat question pushed Shayne toward a skill he’d never have considered before his stroke: typing, then editing, then filmmaking. He describes teaching himself to type as doing more for his affected hand than any of his occupational therapy, and it opened a door to something bigger. Once home, he noticed a gap: plenty of content from doctors and news stations about stroke, but very little from survivors themselves, talking honestly about what recovery actually looks like.
So he started the UpStroke Podcast. Then, within days of getting home from inpatient rehab, he set himself an ambitious goal: make a full-length stroke recovery documentary about his own experience, and finish it within six months. No film background, no crew, no guaranteed audience just early mornings, self-taught editing, and a refusal to let pride keep him from trying something that scared him.
Making a Stroke Recovery Documentary From the Ground Up
The finished film runs 55 minutes and represents hundreds of hours of work planning, scripting, filming, and re-filming after the inevitable rookie mistakes (forgotten microphones, unrecorded interviews, background noise nobody caught until the edit). Shayne interviewed his own kids and friends for the film, describing the process as “ripping the same band-aid off fifty times a day for six months straight.”
What makes a stroke recovery documentary like this different from a polished studio production is exactly what makes it valuable: it was built by someone still living the recovery it documents, using the same self-taught persistence he’d once applied to fixing pipes and riding through winter.
Screening the Film for the People Who Understand It MostThe most meaningful moment of the entire project, Shayne says, wasn’t a premiere or a review; it was screening the documentary at the rehab facility where he’d been an inpatient, for a room that was roughly 80% stroke survivors and staff. He remembers patients in that same gymnasium who never had a single visitor in six months, and he now sees his film and podcast as a way to reach exactly those people: the ones running out of hope in a system that doesn’t always have room to give them much of it.
A New Club
Shayne no longer rides with the one-percenter club he’d started prospecting with before his accident. He describes his community now as “a bunch of stroked out strokers,” the friends, fellow survivors, and families he’s met through the podcast and the film. It’s a different kind of brotherhood than the one he set out to find, but by his own account, it’s the one that’s carried him.
His documentary is now available free on YouTube, so that as many stroke survivors, caregivers, and healthcare professionals as possible can watch it.
If Shayne’s story resonates with where you are in your own recovery, Bill’s book, The Unexpected Way That A Stroke Became The Best Thing That Happened, walks through ten tools for recovery and personal transformation built from these same kinds of conversations: recoveryafterstroke.com/book.
If this show has helped you, you can support it at patreon.com/recoveryafterstroke.
Footer Disclaimer: This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
The transcript will be available soon…
The post The One-Percenter Biker Who Turned His Stroke Into a Documentary appeared first on Recovery After Stroke.
Why Your Stroke May Not Be Causing Your Brain FatigueFor a long time after my brain surgery, I assumed my body worked like this: the stroke happened in my head, so whatever went wrong afterward would also happen in my head. Fatigue, brain fog, slow thinking all of it filed under “neurological,” all of it explained by the injury I already knew about.
That assumption turned out to be wrong, and the way I found out was almost accidental. About eighteen months after my brain surgery, I had thyroid surgery to remove a nodule so large it had pushed my windpipe and esophagus six centimeters out of place. I had no idea it was there. No lump I could see, no difficulty swallowing or breathing that I’d noticed. It was found only because I had a chest X-ray to rule out an infection, and a doctor spotted something that had nothing to do with why I’d walked in.
What followed was a slow, confusing recovery from that second surgery, and a wave of fatigue I automatically blamed on my brain, because that was the injury I already understood. It took time to realize the fatigue might be coming from somewhere else entirely: my thyroid.
Hormones and Stroke Recovery: The Connection Nobody Talks AboutI brought this experience to Dr. Robert Hedaya, a Clinical Professor of Psychiatry at Georgetown University Medical Center and a pioneer of functional medicine psychiatry, to understand what actually happened, and to ask a bigger question: how many other stroke survivors are dealing with fatigue, brain fog, or mood changes that they’ve written off as “just the stroke,” when the real driver is a hormonal system that’s quietly stopped working properly?
Hormones and stroke recovery turn out to be far more entangled than most of us are told. As Dr. Hedaya put it plainly: the brain is a hormonal organ. Thyroid hormone, cortisol, testosterone, estrogen every one of them acts directly on brain tissue, and every one of them can be knocked off balance by the stress of a major medical event.
Why “Normal” Thyroid Bloodwork Can Still Mean Something’s WrongOne of the most important things Dr. Hedaya explained is that a “normal” TSH result doesn’t rule out a thyroid problem, especially after a stroke. TSH is a signal sent from the pituitary gland, and if a stroke has affected the brain’s signaling pathways, the pituitary itself may not respond the way it should. A survivor can have genuinely low thyroid hormone while their TSH sits comfortably inside the standard reference range, because the system responsible for raising that number in response to a deficiency isn’t functioning correctly.
He also raised a striking data point: population studies suggest the average TSH in a healthy population is closer to 1.4, yet most labs still use an upper reference limit of 4.5, a range wide enough, statistically, to miss a real problem. His advice for survivors going into a GP appointment: ask specifically for TSH, free T4, free T3, and reverse T3, not just the standard single-marker test, and come prepared with symptoms written down if a doctor pushes back.
A Nodule That Grew in SilenceThe brain is a hormonal organ. It’s an immune organ. It’s a neurological organ… there’s not one hormonal axis when it’s abnormal that cannot cause neurological or psychiatric problems.-Dr. Robert Hedaya
My own nodule is a case study in exactly this kind of silent progression. Dr. Hedaya explained that because it grew inward rather than outward, it never created the visible lump most people associate with a thyroid problem, and because it didn’t press on my vocal cords or laryngeal nerve, I never developed the hoarseness that might have flagged it sooner. My body adapted gradually, and the fatigue that eventually surfaced was easy to misattribute to the injury I already knew I had.
Cortisol, Stress, and the Difference Between Pain and SufferingBeyond the thyroid, Dr. Hedaya walked through the role of cortisol, the body’s primary stress hormone, and why survivors often struggle to answer a deceptively simple question: “Are you stressed?” His distinction between pain and suffering is worth sitting with: pain is often unavoidable, but suffering is shaped by the story we tell ourselves about a situation, and a stroke can compromise the very brain systems that regulate that stress response in the first place.
Testosterone, Estrogen, and the Brain’s Need for Hormones to RewireThe conversation closed on sex hormones, testosterone and estrogen, relevant to both men and women, and their role in neuroplasticity. Dr. Hedaya drew a direct comparison to adolescence: the teenage brain rewires itself while hormone levels are surging, and the same principle applies after a stroke. A brain trying to rebuild pathways needs adequate hormonal support to do that work. Without it, recovery can stall in ways that have nothing to do with effort or physiotherapy.
What You Can Do About ItIf any of this sounds familiar fatigue that doesn’t track cleanly with other recovery milestones, or symptoms a doctor has waved off as “just stress,” Dr. Hedaya’s PNIE (psycho-neuro-immuno-endocrinology) questionnaire is a useful starting point.
PNIE Questionnaire download: https://drive.google.com/file/d/1S7kC5uMFgBfS-gWcUOIHp0kOjGnrzZK5/view?usp=sharingIf thyroid function specifically is what you’re navigating, the earlier conversation with Dr. Elena Zinkov, “Stroke Fatigue and Thyroid,” goes deeper into that piece (https://recoveryafterstroke.com/stroke-fatigue-and-thyroid/). And for more from Dr. Hedaya, the first conversation on photobiomodulation and stroke recovery is a good companion listen (https://recoveryafterstroke.com/photobiomodulation-stroke-recovery/).
Getting your body back after a stroke is rarely just about the brain. My book, The Unexpected Way That A Stroke Became The Best Thing That Happened, goes further into the mindset shifts that came out of my own recovery (recoveryafterstroke.com/book). And if this podcast has helped you, you can support its continuation at patreon.com/recoveryafterstroke.
This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
Hormones, Fatigue, and the Brain: Dr. Robert Hedaya Returns (Interview)A baseball-sized thyroid nodule hid in plain sight after Bill’s stroke. Dr. Hedaya explains the hormone testing every survivor should ask for.
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Highlights:
01:45 Hormones and Stroke Recovery
02:11 Understanding Thyroid Function and Its Impact
17:07 Navigating Thyroid Health with Healthcare Providers
27:09 The Role of Stress and Cortisol
39:09 Nutrition’s Impact on Brain Recovery
Transcript:
Hormones and Stroke RecoveryBill Gasiamis (00:00)
And they noticed a massive lump in my throat and my esophagus and my windpipe were pushed six centimeters.
And they said to me, well, can you swallow? Can you breathe? Can you do it? And I was like, yeah, I’m all fine. There’s nothing wrong with my throat. that was the first sign that there was something wrong with my thyroid
Bill Gasiamis (00:19)
Welcome back to Recovery After Stroke. I’m Bill Garciamas, and today I’m joined again by Dr. Robert Hedeya, clinical professor of psychiatry at Georgetown University Medical Center and a pioneer of functional medicine psychiatry, whose highland approach to brain health first brought him onto the show for our conversation on episode 404, where we discussed, amongst other things, photobiomodulation, a type of transcript.
cranial laser therapy helping some stroke survivors recover lost function. He’s back today for a conversation I wanted to have for a while, the hormonal side of stroke recovery.
We’re going to talk about thyroid function, cortisol, and stress physiology, and sex hormones like testosterone and estrogen, and why every one of these systems can directly affect how well and how fast your brain recovers.
I’ll also share my own story of a thyroid nodule that grew undetected, which was discovered after my brain surgery completely by accident.
if this conversation resonates with you, my book, The Unexpected Way That a Stroke Became Thethe Best Thing That Happened goes deeper into the mindset shifts that shaped my own recovery. You can find it at recoveryafterstroke.com/book. And if you’d like to help keep this podcast going, you can support it financially at patreon.com/recoveryafterstroke.
Bill Gasiamis (01:46)
Robert Hedaya, welcome back to the podcast.
Dr Hedaya (01:49)
Thank you for having me, Bill.
Understanding Thyroid Function and Its ImpactBill Gasiamis (01:51)
thank you for being here. The last conversation we had was very well received. And it’s always difficult in a one hour interview to ask all the questions that we could possibly ask about the brain and stroke recovery and all the things that people go through. And…
I’ve got a lot of other questions that are related to the brain and the link between other parts of the body and the brain, because we have this sense. Well, I did at least when I was first diagnosed that whatever happens in my head is kind of isolated, that it just impacts my head. But there seemed to be some other impacts and cascading effects.
that were occurring, uh, that I didn’t know were linked to the brain injury,
Dr Hedaya (02:45)
Yeah.
Bill Gasiamis (02:46)
maybe indirectly, but they were perhaps. But one thing specifically that happened to me about, uh, 18 months after my brain surgery was I had thyroid surgery to remove a nodule on my thyroid. And when I was going through the recovery after that,
surgery, I noticed that I had fatigue and I thought it was neurological fatigue related to my brain surgery. But it took a long time to develop an understanding that perhaps that batch of fatigue was related to my thyroid. And then that got me thinking all sorts of things. know, if the thyroid also causes the same neurological fatigue that
brain injury causes, what people might be missing this in their healing from a brain injury, they might have a compromised thyroid and not know about it. So the first question is, what is a thyroid? What does it do? And why does it cause neurological fatigue?
Dr Hedaya (03:54)
Okay. So thyroid gland sits in the neck, right? There’s two lobes, there’s one on the right, one on the left, a little kind of island in the middle called the isthmus, and and it controls many functions, metabolism overall, energy overall, just broadly speaking. now it affects the immune system. It’s affects the nervous system.
It affects the gastrointestinal system, it affects the muscles, it affects the heart, right? It affects the skin, it affects the nails, it affects the hair. You know, and I could go on and on and on. Okay?
Bill Gasiamis (04:34)
Wow.
Dr Hedaya (04:35)
Now the interesting thing about this is that this be a little technical, but the thyroid puts out a hormone called T4 or thyroxine, and this is a little molecule with four iodines in it on it, and that
Gives you about 20% of the activity of your thyroid hormones in your body. But then that T4 goes all over the body to different tissues, and each tissue can has its own system to change that T4 into T3 by removing an iodine. T3 has 80% of the thyroid activity. So that means each tissue in the body can control how much thyroid it.
It’s using and needs, right? And and has available to it. Okay. So that means the brain, the heart, the liver, the lungs, every tissue has its own enzyme that allows it to kind of modulate how much thyroid, right? Now, so why does that cause neurological fatigue? Well, thyroid in the brain affects neurotransmitters like adrenaline in the brain, which is called nor norepinephrine, noradrenaline. in order for that to work.
The T3 has to be in the right amount for the receptors for the noradrenaline to be structurally correct so they can transmit the signal. It’s necessary for production of energy in all the brain cells. It helps the immune system in the brain. It carries molecules from here to there in the brain. it affects serotonin transmission in the brain, so mood regulation, anxiety, obsessiveness, depression.
You know, those are just some of the functions of the brain, but it affects every cell in the bane in the brain. So you’re gonna, if your thyroid is off, most likely you’re gonna have some kind of brain problems, particularly, you know, when your thyroid is off, the tissues in your body that are most compromised or most stressed, that’s probably where it’s gonna show up, right? And in the case of stroke, that’s where it’ll show up.
Bill Gasiamis (06:44)
So it’s possible then, is it possible to overlook it? Is it very obvious that your thyroid is out of, well, is dysregulated or is not working properly?
Dr Hedaya (06:56)
Well, in general it’s easy to detect. And if you want, I’ll tell you how. So
Bill Gasiamis (07:04)
Yeah. Tell me how.
Dr Hedaya (07:07)
so there’s some blood tests that are simple and then s some symptoms. so for most people this holds. When your thyroid is low, you know, you’re gonna be cold easily, you’re gonna have dry skin, brittle nails, hair will fall out.
Muscles will be weak, thinking will be slow, movement will be slow, getting up from a chair will be more difficult, going upstairs will be more difficult, your heart rate will slow down, you’ll be constipated. Those are the most common symptoms. If your thyroid is overactive, then you could be have palpitations, oily skin, acne, oily hair.
Diarrhea, you know, kind of the opposite. The thing that’s a little confusing with the thyroid is sometimes overactive thyroid can show up and look like it’s underactive symptomatically, or vice versa. So you really need the labs. And the labs are TSH, which is thyroid stimulating hormone, and that’s tells you what the brain is doing. And then free T4.
That’s the amount of T4 that’s kind of floating around free, not bound to protein, so it can actually do its job. The way I think of it is like, you know, a lot of the thyroid home is sitting on a bus. It’s not free, it’s bound to protein. Can’t do its job. But the stuff the thyroid this that’s out of the bus or not on a protein, that can do its job. That’s the free T four. And then the free T three, right, which carries eighty percent of thyroid activity.
And then the last one is a reverse T3 because sometimes if your tissues in your body are making too much thyroid or getting too much thyroid, they’ll actually, instead of taking the iodine off the T4 molecule on the right side, they’ll take it off on the left side, or vice versa. So they make a fake T3 that doesn’t work. And this way they short circuited okay, you got all this T3. Well, let’s make it into a fake, fake T3 so it can’t do anything.
So reverse T3 is also very important. And then you want to measure body temperature. Usually it’ll be low. And then, you know, a physical exam. Those are the ways to do it. If you wanted to go even deeper, you could do some genetic testing. There are genes that will tell you whether you’re converting the T4 to T3 in the brain.
Adequately, or maybe you’re more likely to be slow in that regard. So you can have normal numbers in your blood, but your brain might be hypothyroid, right? And there are actually a lot
Bill Gasiamis (10:05)
Uh-huh.
Dr Hedaya (10:05)
of studies showing that hypermetabolic, like high doses of free T3, actually reverse treatment-resistant depression because it’s it’s thought that there’s a local in-brain.
hypo-low thyroidism. You can have low thyroidism in your heart, in your muscles, but not in the other tissues, you know, because I told you every tissue can control how much it’s making. So if you have a genetic vulnerability, then you you might more be in general be more likely vulnerable to depression or to ADD or to anxiety, things like that.
Bill Gasiamis (10:42)
Wow. Are you blowing me away? I didn’t expect to hear any of the things that you just said. X. Um, some of the things that you described, the, uh, some of the symptoms that you described, had those intermittently in and out all the time, other than a thyroid nodule, which is what I had, which was obvious on a scan.
Dr Hedaya (11:05)
Yeah.
Bill Gasiamis (11:06)
What other things caused the thyroid to not function?
correctly. So is there lifestyle factors that interfere with the thyroid gland and therefore, you know, then have the cascading effect and take off, take all those other things or some of those other things offline.
Dr Hedaya (11:28)
So there a number of causes, right? So first of all, let’s take someone who has had a stroke or chronic illness, right? So you’re under stress and that affects your stress hormones, your adrenal glands, cortisol, etc. Well, if your adrenals kind of poop out, then maybe your body says, Well, I can’t handle all this thyroid, even though the amount is normal, it’s like too much. I can’t handle it, so it’ll make less thyroids. Now you
develop a hypothyroidism. You could develop it just because all the chemicals in the environment, the ha the hormone interrupting chemicals, there are hundreds of those. you could develop it ’cause of nutritional deficiencies like tyrosine is necessary to make thyroid hormone, copper, you know, things like that. I can’t tell you offhand which which nutritional factors, but people can look that up, what nutritional factors are important.
To make thyroid hormone. and then infections like, for example, Lyme disease causes Hashimoto’s thyroiditis, which is an autoimmune where your immune system’s actually attacking your thyroid. COVID vaccination, like the Pfizer and the Moderna vaccine, if you are genetically vulnerable, can also cause your immune system to attack your thyroid. So there are many, many causes, plus there are inherited genetic vulnerabilities and it
It’s not always low thyroid, sometimes it’s high thyroid, hyperthyroidism, like Graves’ disease, right? You can have antibodies
Bill Gasiamis (13:01)
Mm-hmm.
Dr Hedaya (13:02)
that are actually stimulating thyroid activity as well.
Bill Gasiamis (13:06)
Wow. The environmental toxins. we talking about all day, every day household use kind of environmental toxins? I imagine the external of the house, they’re kind of out of our control, right? We’ll talk about like, you know, like pollution or things that are associated to things that are caused that we don’t necessarily control, but internally inside the house or what we expose ourselves to that we can control.
what would some of those environmental toxins
Dr Hedaya (13:38)
Well
Bill Gasiamis (13:39)
be?
Dr Hedaya (13:40)
so for example, you know, in your produce, you know, there are pesticides, or in the man made materials in your car or the man made materials in your home. Let’s say you bought a new home and you have, you know, some kind of synthetic floors or furniture with synthetic materials or materials that are natural that are treated with chemicals for various reasons. Those things all can be not everyone is, but many of them are called homes.
hormone interruptors because they actually can change the way your hormones function. You know? So we’re the truth is we’re bathed in these chemicals. They’re everywhere. And very hard to escape them. The best thing you can do is kind of try to detox them using a healthy diet, a lot of crucifer vegetables and lots of vegetables, above ground vegetables that are grown in healthy soil.
Without pesticides, organic preferably, right? and then there are supplements you can take, such as metagenics makes something called UltraClear Plus, which helps support the liver, and its detox functions. You know, some people are more vulnerable than others, but you know, these thyroid nodules you like you have, they’re very, very common now. Very common. And that’s you know.
In large measure, I think these hormone interrupters that are interfering with how the the thyroid follicles in the thyroid gland are operating.
Bill Gasiamis (15:13)
Is it possible to have thyroid nodules and not know about it? I, I
Dr Hedaya (15:18)
Yeah.
Bill Gasiamis (15:19)
say that because I had nodules that were the size of a baseball, apparently in my throat that were growing inwards, that didn’t make a lump outside of my throat, which
Dr Hedaya (15:33)
Yeah.
Bill Gasiamis (15:34)
I was not aware of. And the way they found it was they did a chest X-ray after brain surgery because I wasn’t recovering well.
to check my chest to see if there’s an infection. And they noticed a massive lump in my throat and my esophagus and my windpipe were pushed six centimeters.
Dr Hedaya (15:52)
Wow.
Bill Gasiamis (15:53)
I’m not sure what that is in inches. And they said to me, well, can you swallow? Can you breathe? Can you do it? And I was like, yeah, I’m all fine. There’s nothing wrong with my throat. But that was the first sign that there was something wrong with my thyroid before that.
there was no sign of it. I ask that because either I’m totally oblivious or it is possible to have thyroid nodules and not know it.
Dr Hedaya (16:23)
Well, most people don’t know it. Now yours is so massive, but I think it’s kind of what you said is how it grew. If it grew towards your vocal cords or your laryngeal nerve or something, you would have had some pretty bad hoarseness or something like that. But it grew I guess backwards so it didn’t interfere that much. And I guess your s your body adapted gradually over time. You know, yes, it’s very possible for sure. Very common.
Bill Gasiamis (16:49)
And
how would somebody interact with a general practitioner, for example, now to go through the process of understanding, A, their thyroid health and whether or not they have any nodules.
Navigating Thyroid Health with Healthcare ProvidersDr Hedaya (17:02)
I mean in other words, given what we’ve talked about, how should they approach their doctor basically?
Bill Gasiamis (17:07)
Yeah.
Dr Hedaya (17:08)
I guess I would say go to AI, get a list of the symptoms of low thyroid or high thyroid or all of them, check them off. So then when you go to the doctor you have a list, check your temperature, check your pulse, although the doctor will should check that. And then you could say, look, I have these symptoms, or maybe you don’t have any.
But if you do, you have these symptoms, and clearly thyroid hormone levels can affect the brain. And I’d like a TSH, a free T4, a free T3, and a reverse T3. That’s it. And if they
Bill Gasiamis (17:45)
Okay, perfect.
Dr Hedaya (17:46)
say, no, no, we don’t need to do that, you know, a lot of times what they do, they’ll just do a TSH. Or they won’t do the reverse T3. They don’t, unfortunately, look at the thyroid gland in a dynamic way. They say,
the TSH is fine. If your thyroid was low, your TSH would go high. We don’t need to do the rest. But that’s not true. That’s not true at all. Because especially if you had a stroke, your pituitary function may be compromised. Your TSH may be fine or low and your low thyroid. As matter of fact, in the last interview, the case that I talked about, who referred me to you, she actually had a low TSH, but she had a very low, I think it was a free T4.
Or free T3 or both, whatever it was, but she had too little thyroid hormone, and her pituitary couldn’t respond because of the stroke.
Bill Gasiamis (18:37)
understood. So that’s a great list of
Dr Hedaya (18:37)
So so be you have to be
dogmatic and you say to the doctor, look
Even put into even put into AI and say, look, if the doctor comes back to me and argues against these tests, what should I say? You gotta be prepared because the doctor will steamroll you. You know, that they only allow this, they only allow that, I’ll only do the free T4. Well, that doesn’t tell you how much has been converted to T3, free T3, and it doesn’t tell you, even if the free T3 is normal, that doesn’t mean you’re not overproducing thyroid and and dis
you know, and neutralizing it with the reverse T three. So, you know I mean I I mean I think it’s s so important that a thorough look is is really important. If you have the symptoms, you know.
Bill Gasiamis (19:22)
I agree with you. That list of to-dos, I’m gonna put that on the show notes. People can go and get that list if they don’t wanna go into AI themselves or they haven’t got the time or whatever. They can just download it from there. And then they’ll be able to take that and begin a conversation with their general practitioner. What’s interesting is that I’m in Australia, you’re in the United States. My general practitioner is pushed back when a…
when a patient will turn up and say, I have these tests? They’ll say, well, no, you don’t have any condition that is obvious that you need these tests. So it’s not covered. So you don’t need to do it. So my next suggestion to them is no problem. Order the tests and I’ll pay for them. Now it’s not ideal, but if you’re not going to do them for me and I need to know, cause it’s my health, I’m going to pay for them. So just tell me how much it is and I’ll find a way and I’ll make it happen and I’ll pay for it. So that’s another option.
Dr Hedaya (20:17)
Yeah.
But if you go in with your symptom list, right, and you say, Well, that’s not true, because these are the symptoms, you know, that I have, here they are, right here. You can take a look, you know. And then the last thing I’ll say, this gets even more tricky, is the reference range, I’m sure in Australia, but certainly in the United States, the reference range basically is of the TSH, the pituitary home.
Is 0.5 to 4.5, meaning you anywhere in that range and your TSH is normal. That is a bad reference range. And I know it to be a fact because I I I guess I won’t waste your time with it, but I did a study on a hundred people and with a very sensitive thyroid test called a TRH stimulation test. and I was able I hired a statistician to calculate this.
And say, well, I don’t want to keep doing this test on everybody. What TSH predicts an abnormal TRH stimulation test? And he came back and said to me, Well, once the TSH is over 1.4, it starts to increase your odds of having an abnormal TRH stimulation. So I said, okay, so 1.4 TSH is my cutoff, right? That’s in my mind. I said, okay, that’s that’s my cutoff, that’s when I get suspicious.
Later, several years later, a paper came out, a large, large study, called the NHANES Study, Nurses Health, and I’m not sure what it stands for. Thousands of people followed over many, many years, over decades, and they found the mean TSH in the US population is 1.4. So, right where I what right where my study found. So that means statistically, it is not.
impossible to have the upper limit of the reference range being at four point five because statistically the upper limit is never more than two standard deviations.
So even if your standard deviation is 1.4, which it can’t be, you you’re not going to reach 4.5, right? Unless you have a it’s called a bimodal distribution curve. If you have that, then you’d say, well, it it could be. But we don’t have that with thyroid. So that reference range is wrong. The upper limit of the reference range should be 2.5. And about half the endocrinologists in the United States believe that. And half say, no, no, no, don’t change it.
So that’s another sticky point because, you know, easily people get a result and they’ll go to the doc and say, no, the reference range is 4.5. You’re normal. Then you could say, well, look, I have these symptoms, and they could do a literature search. What’s the normal reference point? What in in the N A N HANES N-H-A-N-E-S study? It’ll show you 1.4. and you could take be prepared to go to the doctor and say, Well, here’s a study that suggests that the reference range may be incorrect.
and I have symptoms by the way. We don’t treat the lab, we treat the person. So could we give a trial? Just a trial, there’s no harm done, you know, trial. Let’s see let’s start at a very low dose. Let’s see how I feel. Maybe I’ll get better. I’ll come back in a month.
Bill Gasiamis (23:45)
Yeah, I love that. It’s really good advice, especially coming from someone who is a doctor who think is thinking on the same way as me, for example, the patient. Because that’s like a match made in heaven. And that’s so rare to be able to get that. Often, my challenge to my general practitioner was well, the reference range isn’t that average of a sick population, because it’s usually a sick population that comes to see you to get bloods. It’s
It’s not the most healthiest people that come to see you to get bloods. And that’s kind of how I try to like start the conversation of convincing a general practitioner to do a test that they’re reluctant to do. And when I say they’re reluctant, I’m not in there every day. I’m not in there every week. And I’m not putting stress on the system to an extent where I’ve been over using the system. I’m not at all.
in there once, twice a year, maybe, you so if I’m in once, twice a year, well, then, I’m not mucking around. Like I’ve come there to investigate something that I’m suspecting is wrong with me. It’s my body. I’m feeling something. had a bit of a look online. This is what I suspect. Don’t try and convince me out of my thinking or my instinct more better. Why don’t we just, work together to get to the bottom of it. If it is something it is, if it’s not, it’s not, and that’s okay. Not a big deal. I’m better to know.
then not no, I think, you know, it’s better to be safe than sorry in my mind.
Dr Hedaya (25:16)
Yeah. I would
I would only think only correction I would make is the reference ranges generally are made on normal populations. Now now the thing is who’s normal anymore? Number one. Number two, that’s a statistical norm that doesn’t tell you anything about your genetics.
your vulnerabilities, it’s not an individualized statistic. I mean it’s it not an individualized thing. What’s your normal range? And are you out of your normal range? Nobody can answer that, right? Unless you had previous data before you were ill. And you say, well look, I’ve been running at a 1.1 for five years or 10 years and now I’m at 3.2. That’s a big change. Well, you know you’re stressed. Well yeah maybe but here are my symptoms. Always come back to your symptoms.
Bill Gasiamis (26:11)
Got it, got it.
Dr Hedaya (26:12)
No.
Bill Gasiamis (26:13)
You use the word stress just now and my general practitioner says, I might go in and some bloods might be out of whack or some things might be not feeling great. And he’ll say, are you stressed? And I’m like, well, I’m not stressed. like, I’m not stressed in any way that I can say is worse than normal. For example, I’m
Dr Hedaya (26:35)
Mm-hmm.
Bill Gasiamis (26:36)
just, you know, I’m attending to my clients at work.
picking up the kids from school, I’m, you know, making sure the bills are paid. Like I’m just doing the normal things that I always
Dr Hedaya (26:48)
Right.
Bill Gasiamis (26:48)
do, which tend to be stressful. And somehow when we talk about stress, cortisol seems to come into the conversation.
Dr Hedaya (26:57)
Mm-hmm.
The Role of Stress and CortisolBill Gasiamis (26:58)
And I don’t know how to respond to a general practitioner who says to me, am I stressed? Because I’m not experiencing something extreme or dramatic.
in the months before I came to see him. So can we have a conversation a little bit about stress, cortisol, what is stress, what is cortisol, are they linked? Tell me about that, give me your thoughts.
Dr Hedaya (27:21)
Okay.
Okay, so this is a multi-layer system. Okay, it starts with your perception and your of a situation and the story you tell about you the story you tell yourself about the the situation and your need for control of a situation and as opposed to saying I’m in the flow of the universe and
All right, this is you know, this is the way it is, and I’ll adapt to it. Not so easy by the way, but it’s a much healthier way because most things will not stress you. Now, pain, let’s say you stepped on a nail, you’re gonna have stress, okay? Totally stressful, etc. But there’s a a difference between pain and suffering. Most of our problem is suffering. Suffering is a result of thinking patterns.
perspectives of yourself and the world and the future and blah blah blah. I could talk about that for a long time. And that is probably one of the most important places to intervene and to train yourself, etc. Now, once this thing is registered as stress, it goes through back to the hypothalamus and the pituitary where all those hormones are controlled, the hypothalamus and pituitary in the brain, now you’ve God forbid, you’ve had a stroke.
Those things may be affected, therefore, those systems may not be working well. In that case, you may not be able to handle stresses that you used to handle. You may not you may not have those shock absorbers. So, how do you measure this? I think the way you measure it again are symptoms, and typically it would be low cortisol and low DHA, d DHEA, and low pregnenolone.
And the symptoms would be a lot of fatigue, right? Maybe poor wound healing, muscle aches, body pains, getting sick more easily, cognitive slowing, depression, anxiety, extreme exhaustion, salt cravings, in unstable temperatures, you know, I would say yeah
You know, th loss of appetite in severe cases, you know, dizziness on standing. Okay. So those are the low adrenal output things. Now how d how do you measure and again, you think you have a problem, go to an AI thing, make that list, check it off, whatever applies, and you know, work yourself up symptomatically and then ask well, okay, what what are the best tests here? What are the
best test. Now the way I test it is I get morning I got a morning like eight to nine a.m fasting ACTH and cortisol. It’s gotta be in the morning around between eight and nine a.m.
fasting. I also at the same time get a D, like David, H E A and a D H E A sulfate, and then I also get a pregnenolone. And if I think there’s any kind of sex hormone problem that I want to check, then I will check a free testosterone, FSH, LH, and
The testosterone measures the free testosterone is very unreliable. So if it comes out low, you want to do it two more times to double check that. But the other measures are pretty reliable. And then you’ll you’ll know the other thing you can do is you could do something called a Dutch test, which is a urine test that’ll look at your cortisol through the day, or an adrenal saliva test. It’s ASI, alleval adrenal saliva index, the Dutch test.
or the ASI, both good tests. and those will tell you what’s going on through the day. Like if you’re not sleeping, it could be because your cortisol high at night, you know. Wake up horrible or in pain. Could be because your cortisol is really low in the morning. Really low. You can’t even get out of bed, you know, can’t get going, right? So these are all all things that you can do to measure and then you can replace these hormones and
That’s one thing to do. The other thing to do is to work on how you manage stress. There are millions of ways of doing that, right? From meditation to heart math to
Bill Gasiamis (32:05)
Mm-hmm.
Dr Hedaya (32:06)
yoga to you know, there’s just a lot a lot a lot of ways to
Bill Gasiamis (32:10)
Yeah, let’s go back for a moment and talk about testosterone because when I hear testosterone, I’m hearing you say to a male that I need to have testosterone in my body and at certain levels, et cetera. And sometimes it can fall out of whack and you need to get it tested. I had mine tested recently. It’s all good. But women also need testosterone. Tell me about that.
Dr Hedaya (32:35)
Yeah, so I was I was thinking of both male and female when I said it,
Bill Gasiamis (32:38)
Yeah.
Dr Hedaya (32:39)
because it’s it’s you know, women who are postmenopausal can have it’s much more common to have a low free testosterone loss of libido, you know. testosterone the studies which I’ve reviewed a few times, you know, there’s a debate does it affect the mind, the brain, you know. It seems to have an effect on well being, on
vitality muscles, sex drive obviously, libido erectile function, brain cognitive function, some mood effects, etc. So I I think it’s important now i it it has to be managed in women as well as men. You know, in in women testosterone is a step on the way to estrogen as it is in men, right? And in the metabolism, right?
So it it should certainly be assessed in everybody.
Bill Gasiamis (33:39)
Yeah. And estrogen, mentioned estrogen. Now, one of them in my mind, it seems to be more associated again to women, estrogen, especially. And, and then men also have estrogen, need estrogen.
Dr Hedaya (33:55)
Men also have estrogen. I haven’t studied it so I couldn’t tell you, but I imagine it’s doing something. it probably turns men into better leaders after they’re fifty, is my guess. Let
Bill Gasiamis (34:08)
more emotionally intelligent.
Dr Hedaya (34:10)
more emotionally intelligent, less testosterone, you know. You know, I I I
Bill Gasiamis (34:15)
You know what? That’s a good theory. We’ll run with that for now.
I might relate to that, know, who knows.
Dr Hedaya (34:22)
Yeah. I I think
Bill Gasiamis (34:24)
Awesome, awesome, so…
Dr Hedaya (34:24)
Yeah, so w for
for women on estrogen, it depends, you know, who are you assessing? Are you that’s a whole complex subject, you know. Is it a young woman who’s menstruating? Does she have premature ovarian failure, endometriosis, ovarian cysts, insulin resistance, they all kind of travel together, methylation problems, they travel together. is it someone who’s perimenopausal where she’s starting to lose progesterone and getting a lot of PMS?
That’s pretty easy. You can replace the progesterone. Is it postmenopausal a woman who’s just kinda lost the estrogen, lost the progesterone? You know, if there’s a family history of cognitive decline or dementia or something like that, there’s great evidence that transdermal estrogen and some oral progesterone bio bioidentic, not synthetic, is great and reduces the risk for lots of disorders later in life for women. You know. So
there’s a whole you know, there’s a whole way of working all that up, depending on who who you’re looking at. But very important. Now so the let me
Bill Gasiamis (35:31)
Yeah, I love it. Yeah.
Dr Hedaya (35:34)
say this. The important thing here, and this is maybe the most important thing. Someone’s had a stroke, they’re obviously tremendously stressed. You have to look at all the hormones. You can’t the brain is a hormonal organ.
It’s an immune organ. It’s a neurological organ. I used to teach psycho, neuro, immuno, and the chronology at Georgetown for a number of years. Okay? And the brain and hormones, you can’t separate it. So if the brain is under stress, the hormonal axes are under stress, and there’s not one hormonal axis when it’s abnormal that cannot cause neurological or psychiatric problems. Okay? So you must, as part of the work of anyone who’s had stroke.
You must look at the endocrine, the hormonal axis. You know, you must look at it. Why? Because if you’re trying to recover from a stroke and you don’t have adequate hormones, it’s gonna be much, much harder. Much, much harder. Right? But
Bill Gasiamis (36:37)
Peace.
Dr Hedaya (36:38)
if you have if you have the the hormones at good levels, okay, now the the brain has that. If it has its nutrients, it has that, you know, okay, now it can do something, you know.
What happens, think about it this way. What happens in adolescence? The brain is being rewired, the body’s growing, brain is rew being rewired. Where are the hormones? The hormones are skyrocketing. They’re necessary for the rewiring. You had a stroke, you’re trying to rewire brain, you gotta have adequate hormones.
Bill Gasiamis (37:10)
I love it. This is the thing that people miss. You know, we talk about the gap in stroke recovery. Acute phase gets handled
Dr Hedaya (37:19)
That’s
Bill Gasiamis (37:19)
99 % of the time really well. People get patched up and they get sent home in some kind of alive state, whether they are fully functional
Dr Hedaya (37:27)
Yeah.
Bill Gasiamis (37:28)
or working towards it or whether they are less functional and working towards being more functional, like some kind of stage
Dr Hedaya (37:35)
Mm-hmm.
Bill Gasiamis (37:36)
of you’re alive and you’re good enough to go home.
And then there’s no information after that. So how do we assess address? How, what do we know? What do we not know that we need to know? And this is kind of what this conversation is, right? It’s like, okay, here’s
Dr Hedaya (37:53)
Yeah.
Bill Gasiamis (37:53)
a whole bunch of things we’ve just discussed. There might have been things that you heard for the first time. Don’t let that, get in the way of your curiosity and investigate the thing that pricked your ears up, whether it was a symptom that Dr. Hedaya mentioned and just
do a little bit more work in understanding what that is, take that to your general practitioner and begin the conversation of taking responsibility for your recovery. And in my mind, like there’s gotta be like a foundational thing that people can do to intervene that doesn’t cost most of the time anything extra. And that helps encourage and nourish the brain in overcoming these challenges, but then has the
a cascade effect of having the same positive outcome on all the other organs and hormones. And that to me is nutrition. So like, if you’re, if you would suggest to somebody how they might start thinking about their nutrition as opposed to what they might have been doing before stroke, how do you begin that conversation? And what are the two or three fundamental things that they need to consider?
about nutrition.
Nutrition’s Impact on Brain RecoveryDr Hedaya (39:11)
Okay, so
If it doesn’t grow that way, don’t eat it.
I never saw a bread tree. I didn’t see an ice cream tree or a Twinkie tree. Okay. So if it doesn’t grow that way, don’t eat it. Balance your plate. Balance your plate. And actually our coach, Caroline Hade, is putting out an ebook. I don’t know, should be out at a week or two or three weeks. It’s like, I don’t know, four or five dollars or something.
and that will tell you exactly how to balance your plate. and then I would say very important to have three meals and maybe, depending on your how insulin resistant you are, maybe additionally two snacks. and per day, but keep your calories you don’t want to be overweight, okay, because if you’re overweight, you know, that’s a
That’s its own risk factor for brain problems, right? but you can’t lose weight in a day, you’re stressed, you’re hungry, you’re tired, you eat the carbs, you know, everybody struggles with that. But that that is one of the biggest enemies of eating eating eating these processed carbs that we all love is one of the biggest enemies of your health. One of the biggest enemies of your health for sure.
Bill Gasiamis (40:35)
Okay, there are some great resources that people can again look into how to eat to heal the brain. And we didn’t have to have a deep conversation about that. But I love
Dr Hedaya (40:45)
Mm-hmm.
Bill Gasiamis (40:45)
what you said about balancing the plate. And if it didn’t grow that way, don’t eat it. It’s such a simple thing. If it comes in a packet on a shelf in a supermarket with all fancy pictures
Dr Hedaya (40:59)
Yeah.
Bill Gasiamis (41:00)
and stickers and a list of ingredients, like it’s probably not nutritional.
of food. It’s probably something that’s going to make inflammation worse. It’s probably something that’s going to give you the type of energy that is not helpful. It’s probably going to have a whole bunch of other things. And that’s kind of my approach to healing and recovering my brain. It’s one of the first things I did was just look at my nutrition, immediately stop smoking and drinking. mean, I know
it should go without saying, but sometimes you have to have a stroke for it to actually sink in and make sense. and don’t have any alcohol at all. I’m talking about forever if you can, but I didn’t have alcohol
Dr Hedaya (41:46)
Yeah.
Bill Gasiamis (41:47)
for at least the first four or five years. And now in the next five years or so, maybe I had one glass per year, just because I was, in an event where it was, everyone was drinking and it was almost necessary to have
sip or half a sip or act as if I was drinking. So with that, I think we’ll wrap up this conversation today. There’s been a lot for people to digest, go back and listen to it a second time. And a third time that we have some resources in the show notes. And Dr. Hedaya, thank you for joining me again. And I look forward to our conversation that’s coming up in a few weeks time where we’re going to talk about toxin load and neuroplasticity.
Dr Hedaya (42:29)
Beautiful. Thanks so much for the opportunity, Bill. I hope I hope people get something out of this and they pursue what they need to pursue.
Bill Gasiamis (42:36)
Well, that’s a wrap on this conversation with Dr. Robert Hedeya. If there’s one thing to take from today’s interview, it is this. The brain is a hormonal organ and recovery isn’t just about the brain healing in isolation. Thyroid, cortisol, testosterone, estrogen, all of it is connected, and all of it is worth checking if your recovery has plateaued in ways that don’t quite make sense.
Dr. Hadea’s free PNIE questionnaire is linked in the show notes. Download it, work through it, and take it with you to your next GP visit. If you want to go deeper on the thyroid piece specifically, go back and listen to the earlier episode with Dr. Elena Zinkov on stroke fatigue and thyroid.
And if you missed it, the first conversation with Dr. Hedeya on photobiomodulation is a great companion to this one. if this episode has helped you, share it with someone who needs to hear it. That’s genuinely the best way to help this show reach more survivors. My book, The Unexpected Way That a Stroke Became the Best Thing That Happened, is available at recoveryafterstroke.com/book.
And if you’d like to support the show financially, you can do so at Patreon by going to patreon.com/recoveryafterstroke.
Until next time, take care of yourself and don’t assume it’s just a stroke.
The post Hormones, Fatigue, and the Brain: Dr. Robert Hedaya Returns appeared first on Recovery After Stroke.
Single Parent Stroke Recovery: How Jeff Manuel Is Rebuilding His Life for His KidsJeff Manuel was working two jobs to provide for his two teenage kids – a full-time role in electrical sales plus evening grocery-delivery shifts – when a stroke at 52 changed everything about how he could show up for them.
Four years later, he’s not back to where he was. He’s become someone different, and by his own account, someone he likes better.
A Normal Saturday Morning, Then Everything ChangedJeff’s stroke happened on a Saturday in March 2022, but the warning signs started the night before, on his last work shift.
The next morning he made coffee, showered, and drove to drop off his kids’ things at their mother’s house in West Kelowna. When she opened the door, she immediately knew something was wrong – his face had visibly dropped.
A local clinic ran a squeeze test that came back fine and prescribed inhalers for what they assumed was a breathing issue. It wasn’t until Jeff tried to pick up oranges with his left hand an hour later, and couldn’t, that they went to the hospital. A CT scan confirmed he’d had a stroke. He couldn’t move his arm or his leg.
Raising Two Teenagers From a Hospital BedSingle parent stroke recovery comes with a particular kind of weight: the practical question of who looks after your kids while you can’t. Jeff and his ex-wife were separated but living close by, and when he was hospitalized for three months, she and their children – a boy and a girl, both thirteen at the time – stepped in to support him.
She’s been doing a lot for me, and I really appreciate it.
What could have been an awkward or strained dynamic instead became a stronger friendship than the one they’d had before the stroke. Jeff is candid about why the timing mattered to him:
Thank goodness it happened when I was only fifty-two and not seventy-eight, when they’d got their families all grown up and their own worries. I didn’t want to be a worry to their father.
His kids are now nearing graduation, and he stays in touch by text and phone, even though he doesn’t get to see them as often as he’d like.
Two Years Learning to Live AgainAfter hospital, Jeff moved into a residential rehabilitation program called Connect Communities, where he spent two years relearning basic independence – from walking to cooking to managing a wheelchair-accessible home.
Progress wasn’t linear: partway through, his wheelchair tire caught on a mat and led to a fall that required a hip replacement, adding more recovery time on top of the stroke rehab.
The program used occupational therapy milestones to unlock privileges – once he could complete a task within a set time, he earned the ability to grocery shop and cook for himself, working up to preparing a meal every night.
That system became his bridge from full-time care toward the assisted living arrangement he’s in now, which he describes less as being stuck and more as “graduating” toward independent living.
Managing Pain That Doesn’t Go AwayChronic pain has been one of the harder, more persistent parts of Jeff’s recovery – constant pain and tension on his left side, in his shoulder in particular.
After four years of prescribed medication, Jeff made his own decision to stop his pharmaceutical pain pills and manage his pain with medicinal marijuana gummies instead, taken a few times a day.
He credits them with helping not just with pain, but with sleep and digestion too. This is Jeff’s personal experience and decision, made under his own judgment about his body after years of living with it post-stroke – not a treatment recommendation, and as always, any change to medication should be made in consultation with your own medical team.
A Rebirth, Not Just a RecoveryWhat comes through most clearly in Jeff’s story isn’t the physical rehabilitation – it’s the internal shift alongside it.
He describes the last ten years before his stroke as a period of grief he hadn’t fully processed, following the deaths of his mother and sister, and a tendency to put himself first that he says didn’t serve his family. The stroke, paradoxically, became the catalyst for the opposite:
I’d like myself again because I know I’m a good person.
He talks about his recovery in openly spiritual terms – leaning on his mother’s belief that “everything happens for a reason,” and describing his body’s limitations as temporary: “This is only part of your meat suit.” He’s quick to add that this reframing isn’t about denying the hard days. It’s about noticing small, cumulative wins:
Sometimes you’re not aware of what’s happening, and then you think about it – I couldn’t do that yesterday, now I can.
What Keeps Him GoingJeff found Recovery After Stroke the same way many listeners do – searching for answers in a hospital bed, trying to understand what had just happened to him.
I’ve seen so many other people going through it. It really did help me.
Now, four years on, he’s paying that forward by sharing his own story, pain and all, with the same honesty he found helpful when he needed it most.
If Jeff’s story resonates with your own recovery – or your own path back to being fully present for the people who depend on you – Bill’s book, The Unexpected Way That A Stroke Became The Best Thing That Happened, digs deeper into this kind of transformation: recoveryafterstroke.com/book.
If this show has helped you, you can support it directly at patreon.com/recoveryafterstroke.
This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
Jeff Manuel: Raising My Kids Through a Stroke and Learning to Like Myself Again (Interview)A single dad’s 4-year journey from hospital to independence – raising his kids, relearning to cook, and rebuilding who he is.
Highlights:
00:00 Jeff’s Journey: Single Parent Stroke Recovery
04:01 The Day of the Stroke
06:42 Personal Transformation Post-Stroke
09:03 Rewiring the Brain and Recovery
11:04 Support During Recovery
13:32 Mindset and Spiritual Growth
15:25 Challenges of Recovery
18:52 Personal Transformation and Reflection
20:24 Daily Life in Assisted Living
24:01 Pain Management and Coping Strategies
26:28 Future Aspirations and Independence
28:13 Finding Community and Sharing Stories
Transcript:
Jeff’s Journey: Single Parent Stroke RecoveryJeff Manuel (00:00)
Once you get over what has happened, you become a better person.
I like myself again because I know I’m a good person.
if it takes another four or five years to walk again, it takes that.
But if I can get as many tools into my tool chest, I can use later in life.
Bill Gasiamis (00:18)
Welcome back Recovery After Stroke. I’m Bill Gassiamis. My guest today is Jeff Manuel, a single father of two teenagers who was working two jobs full time in electrical sales plus evening grocery delivery when he had a stroke at 52 that left him with left-side paralysis. Jeff describes his stroke as involving a clot and possibly a bleed as well. The exact clinical picture is something we talked through together in the episode.
We get into what it’s like raising teenagers through three months in hospital and two years in residential rehab, and how his relationship with his ex-wife has changed since the stroke, how he’s learned to cook again with one hand and the pain management approach he’s landed for himself after four years of recovery. Quick note before we dive in, if you’re feeling stuck in your own recovery, I now offer one-on-one coaching for stroke survivors.
It’s not therapy or medical treatment, it’s lived experience support, structure, accountability, and someone who’s actually been where you are, having survived three strokes myself. I only work with a small number of people at a time, so it stays meaningful. You can apply at recoveryafterstroke.com/momentum. If Jeff’s story resonated with you, I also wrote a book about my own experience called The Unexpected Way.
That a stroke became the best thing that happened, it is available at recoveryafterstroke.com/book. And if this show has helped you, you can support it directly at patreon.com/recoveryafterstroke. Here’s my conversation with Jeff.
BIll Gasiamis (01:58)
Jeff Manuel. Welcome to the podcast.
Jeff Manuel (02:01)
Thanks for having me.
BIll Gasiamis (02:01)
Tell me a little bit about what life was like before stroke. What were your daily tasks? What kind of things did you get up to?
Jeff Manuel (02:10)
at the time I had two jobs. I had full time journal day and then after after the day job I would go and
And I was I was before I was in a loop to try to catch up and
Provide for my family.
BIll Gasiamis (02:22)
What kind of jobs did you do?
Jeff Manuel (02:23)
I was my last job was in sales, electrical sales.
And I used to I would pick groceries for customers that were just driving by and picking up the groceries. So I’d pick mostly the the dry goods and have it ready for when they eat when they were ready to pick up the groceries.
BIll Gasiamis (02:41)
Was that the after hours job?
Jeff Manuel (02:42)
Pardon me?
BIll Gasiamis (02:42)
Was that the after hours task?
Jeff Manuel (02:45)
Yes.
BIll Gasiamis (02:45)
And how many hours a a week would a day would you say you were working then?
Jeff Manuel (02:48)
I’d be I’d probably have four four four shifts a week.
Sometimes less.
BIll Gasiamis (02:53)
And on the day of one of your shifts.
Jeff Manuel (02:54)
It was manageable
at the time.
BIll Gasiamis (02:56)
It was manageable.
Jeff Manuel (02:57)
Yes.
BIll Gasiamis (02:57)
And on the day of one of the shifts that you went to your regular job and then you did one of those shifts, how many hours would you say that?
Jeff Manuel (03:06)
Five hours.
I believe I worked the five hours that was on my stroke happened on a Saturday. This was a Friday night. So I believe it was five hours. Cause I was started it at five and I finished at ten.
BIll Gasiamis (03:07)
The added
So with your full time job, the regular job, that would be a normal eight hour day and then you would do an additional five hours?
Jeff Manuel (03:30)
Yes.
BIll Gasiamis (03:30)
Okay. And w other than work, what else did you get up to?
Jeff Manuel (03:37)
I’m a single father of two kids.
So as much time as I could spend with him I spent with them even though we were not living in the same house.
BIll Gasiamis (03:45)
Understood. How old were the kids?
Jeff Manuel (03:46)
Thirteen.
BIll Gasiamis (03:47)
Two boys, two girls.
Jeff Manuel (03:49)
boy to give us
BIll Gasiamis (03:50)
Sorry, Jeff, what was that?
Jeff Manuel (03:51)
Boy and
a girl, I’m sorry.
BIll Gasiamis (03:52)
A a boy and a girl.
And you were working the extra hours to cover everybody and make sure they had everything they needed.
Jeff Manuel (04:00)
Yes.
The Day of the StrokeBIll Gasiamis (04:01)
And what what happened on the day of the stroke, Jeff?
Jeff Manuel (04:05)
Well, I woke up Saturday morning, everything was fine.
Put on the coffee machine. Went and got a quick shower.
Packed up my clothes cause I was going to to their house ’cause they lived with their mother in West Kelowna. And I was living in Peachland at the time. So I drove on the highway, popped into McDonald’s, cup of coffee, couple of sandwiches, and then they were just two minute drive away. knock on a door.
She opens the door and she says, What the heck happened to you? I said, What do you mean?
She said your face is on the ground. My whole left side, I guess, just collapsed.
So then she says we’re going to the clinic.
Is it okay? So go over does a squeeze test. I mean both hands, fine.
And I was walking and talking and doing everything. Like nothing happened yet.
I said the only the only issue I had was a little bit of breathing problems a couple of months previous.
So we prescribe some inhalers and see if that helps.
Mm got the inhalers, tried out an hour later. Didn’t do anything for me.
Then I tried picking I had a shift at twelve o’clock and this was probably about eleven. And I went into the kitchen and tried picking up oranges with my left hand and I couldn’t grab it and put it in the bag and she said, We’re going to the hospital. So, okay. Then I was getting worried. So I didn’t know what it was.
BIll Gasiamis (05:29)
And and then you spent some time in hospital doing tests, were you?
Jeff Manuel (05:32)
Heard me?
BIll Gasiamis (05:32)
Then you spent some time at hospital, were they testing you?
Jeff Manuel (05:34)
Interested C D scan.
Then he comes down and tells me that Mr. Manuel you had a stroke.
Said okay. And then I still can’t comprehend what that actually meant. But I knew it was something wrong. And it wasn’t till the next day that I couldn’t move my arm or my leg.
BIll Gasiamis (05:52)
Mm-hmm. And how long ago was that, Jeff?
Jeff Manuel (05:56)
That was in
Right of twenty twenty two.
BIll Gasiamis (05:59)
March of twenty twenty two.
Jeff Manuel (06:01)
Yes.
BIll Gasiamis (06:01)
Got it. And you seem to be quite still significantly emotionally upset about it. Do you find that you’re have a a few challenges about dealing with your emotions?
Jeff Manuel (06:11)
that’s cool.
I’m sorry, Bible is not upset. It’s happiness.
BIll Gasiamis (06:18)
It’s happiness.
Jeff Manuel (06:19)
I’ve turned a big corner this year And I’m happy I’m happy where I am I’m happy for who I am
This is just temporary. I know that. And I’ve learned to live with it for four years and it’s okay. I’m good.
BIll Gasiamis (06:34)
Lovely, man. So who are you now? Who are you now that you’re happy with who has turned the corner?
Personal Transformation Post-StrokeJeff Manuel (06:42)
I’m I’m more of myself a long time ago with the name. In the last ten years it’s
It’s just listening to other people having a broadcast and internalizing it and using it for the good.
And trying to help people as much as I can. Even it just means a smile and hey you’re doing a great job. That means the world to people.
And for some people they can’t say it, so I’d say it for them.
BIll Gasiamis (07:02)
Mm.
So the the the guy from ten years ago wasn’t happy. What was wrong with that guy? Like what is it that he wasn’t doing that wasn’t serving you?
Jeff Manuel (07:15)
I wasn’t paying attention to what I had to pay attention to my my wife and kids.
I was up north and in the North Territories, which is Canada’s Arctic, for twelve years. Awesome years. Beautiful people.
BIll Gasiamis (07:32)
And what were you doing there? What was the task?
Jeff Manuel (07:35)
Doing a couple of different jobs. My last job was I was assistant manager of like a Costco.
But it was a a locally owned Inn Valley store, so
BIll Gasiamis (07:42)
I went
Jeff Manuel (07:46)
When my boss would be out of town I would have to look after the stores and transfer to other parts of the Arctic.
BIll Gasiamis (07:46)
And were you away from your family at that time?
Did that have you away from your family?
Jeff Manuel (07:55)
No, my family lived right in the same community, so
BIll Gasiamis (07:57)
Uh-huh. And what you you weren’t satisfied with the way you were going about life? What was the difference between now and then? Because you’re quite co comfortable suggesting that there’s been a shift, a change? Were how how were you not
Jeff Manuel (08:13)
I was
drinking way too much.
And then along with grief.
BIll Gasiamis (08:18)
What was the grief in relation to?
Jeff Manuel (08:19)
my mother and my sister had passed away from cancer. But like pretty close to tw twenty years ago now. So and recently it’s been my brother. So it’s been I’ve been thinking a lot about that.
BIll Gasiamis (08:32)
And were you using alcohol to cope before the stroke?
Jeff Manuel (08:34)
Yes.
BIll Gasiamis (08:35)
And did that mess up your relationships?
Jeff Manuel (08:36)
Not necessarily.
BIll Gasiamis (08:37)
How how was it that you weren’t doing the right thing by your family?
Jeff Manuel (08:41)
I’m just thinking more about myself than others.
BIll Gasiamis (08:44)
Putting yourself first.
Jeff Manuel (08:46)
Yes.
BIll Gasiamis (08:46)
Mm-hmm. Got it. And then the stroke happened and how did that change everything? Because the stroke made you unwell. It put you in hospital. But how did that shift the way that you behaved and the the way you went about life?
Rewiring the Brain and RecoveryJeff Manuel (09:03)
Well, in this is my fourth year, so this year I know that my brain is rewiring itself because I can see minuscule changes every single day.
And sometimes you’re not aware of what what what’s happening and well then you think about it and I couldn’t do that yesterday, now I can do it.
BIll Gasiamis (09:24)
understood. And hello
Jeff Manuel (09:26)
And it’s a it’s a
it’s it’s a positive positive thing that happens to you every single day.
BIll Gasiamis (09:32)
Got it, I appreciate that. So you’re seeing small significant changes that are adding up and you’re getting results from that. And it’s been for years now.
Jeff Manuel (09:40)
Yes. I’m happy to say
BIll Gasiamis (09:41)
Understood. That’s excellent. Now, what kind of stroke was it? Did they determine the cause and have they put you on some kind of medication or program to prevent another one? What was the issue with the stroke?
Jeff Manuel (09:54)
No, it was a hemorrhagic stroke on the the right side.
Yeah, I was prescribed a whole bunch of pills and stuff.
I guess it helped at the beginning. I couldn’t tell.
BIll Gasiamis (10:03)
Did they tell you what caused the brain hemorrhage? Do you know?
Jeff Manuel (10:06)
the the doctor said said there was a clot in my this part of the artery on the my right side and my neck. And he also told me that I had a heart attack the week before.
But I didn’t see it, I think. It was just a mark one, I guess.
BIll Gasiamis (10:21)
So so was
So was it a brain hemorrhage or an ischemic stroke?
Jeff Manuel (10:27)
Maybe it’s a brain hemorrhage.
BIll Gasiamis (10:28)
Bleed in the brain?
Jeff Manuel (10:29)
Yes.
BIll Gasiamis (10:30)
Okay. But the clot usually refers to an ischemic stroke, which is like a very different from a a bleed on the brain.
Jeff Manuel (10:39)
No, the it was just the vein that was clouded.
BIll Gasiamis (10:41)
Uh-huh.
As well as a brain hemorrhage.
Jeff Manuel (10:43)
Yes.
BIll Gasiamis (10:43)
So you were really going through it. You had a heart attack, a clot issue and a brain hemorrhage all at the same time?
Jeff Manuel (10:49)
Yes.
BIll Gasiamis (10:49)
Wow. Under. Got it. So how long did you spend in hospital, Jeff?
Jeff Manuel (10:55)
I was there from march twelfth to June fourth ninth in the hospital.
BIll Gasiamis (11:02)
About three months.
Support During RecoveryJeff Manuel (11:04)
Yes.
BIll Gasiamis (11:04)
And who was there to support you during that time? Because if you’re if you’re no longer married and you live separately from your your former wife, who was by your side? How how did you get through that time?
Jeff Manuel (11:18)
That’s funny because it was my ex wife and my children.
She would bring in to see me and f they would feed me and look after me.
BIll Gasiamis (11:28)
That’s very cool. She stepped up.
Jeff Manuel (11:31)
She did she’ve been doing a lot for me. And I really appreciate it.
BIll Gasiamis (11:35)
Yeah, that is lovely. And then you left from the hospital. At some point they dismissed you or discharged you. Did you have to go into rehab after that to try and get your your left side up back up on board?
Jeff Manuel (11:51)
Well, in the hospital I was doing really hard but but I couldn’t I could still couldn’t walk or go up steps or anything, but they applied to put me into Connect. It’s called Connect Communities. And there was a whole bunch of different houses you live in. And it’s like you have your own room, you have your shower days, and you get fed three meals a day.
But everything was wheelchair accessible.
And it was the best two years I had.
There was that place was amazing. The people were amazing. And what they offered ya and taught you was amazing.
BIll Gasiamis (12:26)
Yeah. It sounds like you’ve gone on qu quite a spiritual kind of shift, some kind of a journey, an internal journey as well as the physical healing of your body.
Jeff Manuel (12:35)
Exactly.
This I can live with. This is only part of your meat suit you’re aiming your leg. It all depends on what’s upstairs and how you can teach p other people to live with what’s happening.
BIll Gasiamis (12:49)
What’s one of the biggest things that you learnt when you were in there, by the time you left after two years? Because at the beginning I imagine you wouldn’t have been as upbeat, as positive as you are now.
Mindset and Spiritual GrowthJeff Manuel (13:02)
No, because
You still are learning your your
limits of being disabled or paralyzed. You still gotta live it’s like a regrowth. You learn from a baby again to crawl and then walk. And it’s like up until then it’s learning you think about things if you have to use the watchroom you think about it like twenty five different times before you actually use it.
It’s a like a learning process. And I’m just starting to learn again.
BIll Gasiamis (13:37)
So it sounds like the biggest recovery that you had that’s been the most meaningful then was that kind of mindset part of your recovery, the spiritual part of your recovery.
Jeff Manuel (13:47)
I I
I think once you get over what has happened, you become a better person.
But I I’d like myself again because I know I’m a good person.
And if it takes another four or five years to walk again, it takes that.
But if I can get as many tools into my tool chest, I can use later in life.
BIll Gasiamis (14:09)
Yeah. Yeah. And you know what I love about that is you’re kind of setting an example for your kids, right? Y they may not know it and
Jeff Manuel (14:16)
I tried to my best to set an example because I always said, Thank goodness it happened when I was only fifty two and not seventy eight when they got their families all grown up and their own worries. Didn’t want to be wrong about their father.
They stepped up and being adults when they were thirteen.
BIll Gasiamis (14:34)
Yeah. Were you also a smoker then?
Jeff Manuel (14:35)
Yes.
BIll Gasiamis (14:36)
Okay.
Jeff Manuel (14:36)
I did quit three months before going into hospital but I’m back smoking again, so
BIll Gasiamis (14:41)
You’re back smoking again at the moment?
Jeff Manuel (14:43)
Yes.
BIll Gasiamis (14:44)
And drinking?
Jeff Manuel (14:44)
The occasional drink. I’ve tested my limitations and see where it led.
But I don’t I don’t over anything, I’m sorry.
BIll Gasiamis (14:50)
Can I be can I be
Can I be perfectly blunt with you?
Jeff Manuel (14:57)
Yes, you can.
BIll Gasiamis (14:58)
Why don’t you reduce the amount of time it takes for you to get on your feet from four years to a s a shorter amount of time? And the best way to do that and avoid another stroke and be a real example for your kids is to stop smoking and drinking. That’ll make you more in a in put you more in the zone of allowing your brain to heal rather than continuously putting it in a space where healing is not possible.
Challenges of RecoveryJeff Manuel (15:25)
So understood.
BIll Gasiamis (15:26)
I know the challenge with smoking and drinking is beyond just putting it down and not touching it. I know it’s linked to a lot of other emotions and a lot of other things. I used to smoke and drink as well. But the work to be done is in the it’s in when you don’t have those things to go back to to regulate your emotions or change your mindset, that’s where the work is need to be done. You need to pick up the skills that
make it possible you for you to deal with those particular emotions or those particular things that are going on that make you drink, that make you smoke. And that will enable you to also deal with those challenges of the grief that you’ve suffered in the past. And also will simultaneously make the right environment for healing the brain. And that should speed up the amount of time it takes for you to get back on your feet.
Jeff Manuel (16:20)
That’s gonna be my start processing.
BIll Gasiamis (16:22)
Yeah. I thought you know, we’re here to be honest and frank, and you’re being honest and frank. And I thought, well, I might as well just put it out there. There’s a lot of people that want to get better after stroke, and sometimes they’re doing the things that are getting in the way of recovery without realizing that they’re getting in the way of their own recovery. And that’s kinda like my job, you know, is to sort of say, Hey, here’s a mirror, pay attention to this. Have you seen this before? Are you aware of this? And and then that way, maybe together.
You know, we’ve learned something today and we can overcome and then we can move forward a little better.
Jeff Manuel (16:56)
That’s good advice.
BIll Gasiamis (16:57)
Are you back to independent living now?
Jeff Manuel (16:59)
No, no, no. I mean long term care.
I was in
BIll Gasiamis (17:02)
Yep. Tell me about
that.
Jeff Manuel (17:03)
It’s it’s it’s it’s good for me right now for what I need.
two years ago I had broken my my hip, so I had to get a hip replacement.
So it was extremely hard trying to get your legs into the bed.
BIll Gasiamis (17:17)
Did you have a fall because of the stroke?
Jeff Manuel (17:20)
Not because of the stroke, but there was a a mat that that my tire got jammed into.
BIll Gasiamis (17:26)
The wheelchair tire.
Jeff Manuel (17:27)
Yeah.
BIll Gasiamis (17:29)
man,
I got it.
Jeff Manuel (17:30)
It just slowed down my my mobility a bit in my rehab of the the walking but but it was okay. I got through it.
BIll Gasiamis (17:42)
Got it. And they did
a they did a hip replacement.
Jeff Manuel (17:46)
Yes.
BIll Gasiamis (17:46)
Understood. So then there was some rehabilitation associated to the hip replacement as well to get you back on your feet.
Jeff Manuel (17:55)
Well, caught sorta say get me on my feet, get me in the wheelchair. Yeah. it was another six weeks in hospital.
BIll Gasiamis (18:00)
Yeah, got it. Okay.
Yeah. You had a quite a journey, man. Like a lot of sort of downtime as a result of this condition and then all the little complications and bumps in the road. How have you sort of dealt with that mentally? Have you had somebody to talk to? Have you done some therapy? Like how is it that you’ve been been managing to, you know, wrap your head around all of this stuff?
Jeff Manuel (18:30)
and my mom always had a good say and she said everything happens for a reason. We just don’t know what that reason is at that time. And it’s like, okay, this had happened to me, so now I’m getting to learn why it happened because this is the rebirth of me.
In my journey.
I’m not the guy I was four years ago or five years ago. I’m me now. Somebody different.
Personal Transformation and ReflectionBIll Gasiamis (18:52)
Mm-hmm.
Had you had you in those last ten years before the stroke, had you forgotten about that side of you, that kind of spiritual element of you that you’ve rediscovered? Was it lost in the grief and in the drinking and in the all the work?
Jeff Manuel (19:09)
It went away somewhere, I don’t know exactly where it went, but it went away.
You know, being being on this on this side of the the grass, I guess, I don’t know how you would say it, but going through the healthcare system, you get to see a whole lot of people. And y and you you can sense their their expressions and stuff. A lot of good people. A lot of good people too.
BIll Gasiamis (19:32)
How’s your relationship with with your former wife and kids now? Are they nearby? Do you see them often?
Jeff Manuel (19:37)
And they are nearby, but I don’t see as often as you want. I see at least probably about once a month.
Well, we’re in contact, we text each other and phone each other every now and then.
to graduate next year, so
BIll Gasiamis (19:47)
Are the kids in school?
they’re graduating, so they’ve been busy with school and
Jeff Manuel (19:53)
Their friends and stuff, so
BIll Gasiamis (19:54)
Pretty normal.
Jeff Manuel (19:56)
Yeah, that’s normal teenagers.
BIll Gasiamis (19:57)
Yeah, understood. And your relationship with your ex wife, is it very cordial? Do you guys get along, even though you guys are exes and
Jeff Manuel (20:05)
Yeah.
Yeah, we get we always got along, but we’ve been way better friends the last couple of years.
BIll Gasiamis (20:14)
Yeah. That sounds like it’s a it’s a great relief for you. And also she’s able to really kinda take care and help out with the children.
Jeff Manuel (20:24)
Exactly.
Daily Life in Assisted LivingBIll Gasiamis (20:24)
What is a day like in your facility there where you live? What what do you guys get up to? How do they keep you occupied? What’s it what’s that like?
Jeff Manuel (20:33)
There is a there’s a you have breakfast at eight to ten and then lunches from twelve to one and dinners from five to six. And then you have the rec department that do little games and stuff in the activity room.
I usually go out and and enjoy the fresh air and the sun. It’s warming up here.
much fresh year and San John I can get the better.
BIll Gasiamis (20:55)
And
And do you have a few people that live in the facility with you? Is it quite a large facility? How many people are in there?
Jeff Manuel (21:05)
yeah, there’s three different floors. I’m on the main floor. And there’s probably
BIll Gasiamis (21:10)
Mm-hmm.
Jeff Manuel (21:13)
Probably two hundred people, two fifty in three floors.
BIll Gasiamis (21:16)
Mm-hmm.
A lot of people that I’ve spoken to in the past about those types of facilities get really down about They kind of don’t feel like they should be there or need to be there. How do you manage being there?
Jeff Manuel (21:29)
I’m not totally at the point where I can go live by myself. Right now I still need I still need this. Until I can afford something that is realistic. And you have to be realistic. You gotta think about things a hundred and fifty times more than you would regularly think about things.
BIll Gasiamis (21:34)
So it’s a cent.
Jeff Manuel (21:47)
I can still cook, but
Right now I gotta concentrate on being me.
BIll Gasiamis (21:51)
And getting better. And getting back on your feet.
Jeff Manuel (21:54)
Exactly.
BIll Gasiamis (21:54)
So you can still cook, which is awesome. So you adapted to cooking with one arm?
Jeff Manuel (21:59)
yeah, no problem. As long as you you know what you can do, your limitations, you can do anything.
BIll Gasiamis (22:04)
What’s the hardest part about preparing food with one arm?
Jeff Manuel (22:07)
Well, you it’s pretty hard to make a salad with one arm ’cause you can’t hold the tomato or the cucumber with the other. That’s about it. That’s where you get the you can get these the plastic cutting boards that have spikes in So you just lay out your vegetables.
And then you can use the one hand to cut it off.
BIll Gasiamis (22:27)
And is cooking encouraged to cook for yourself or is that just part of your occupational therapy?
Jeff Manuel (22:34)
at Connect you kinda you led up to being able to cook so the O T would give you a certain task and if you could achieve that task within a certain time limit you you would get X amount of dollars per week to go grocery shopping so you could cook for yourself.
usually and every night I would cook a meal for myself.
And then that graduated into becoming more self sufficient for myself so I could go in assisted living. So they found a place on the west side in assisted living and I lived there for a year and two years.
BIll Gasiamis (22:55)
And the
Jeff Manuel (23:09)
Like just threw you throws your curveball.
BIll Gasiamis (23:11)
Yeah, it sure does.
Jeff Manuel (23:11)
And up there, but
but you know what? I kinda like it. Because you get to meet people, you have discussions.
When you when you’re dying for communication
You can talk to anybody.
BIll Gasiamis (23:22)
Yeah. Your facility there, there’s is there a lot of downtime? Do you guys get to intermingle and connect with each other and share spaces together?
Jeff Manuel (23:34)
Yeah. We can do that. Until we up in the morning and that we go to bed tonight.
BIll Gasiamis (23:40)
Yeah. So it sounds like it’s the great kind of a great place for you, like a a like a space between being independent again to kind of help you get through all the things you need to get through before you qu kind of was it like graduate to independence, I suppose. Is that like i is w is that how you would describe it?
Pain Management and Coping StrategiesJeff Manuel (24:01)
That’s that’s pretty good. I think to me now mentally the better I can become, the better my whole body will become.
BIll Gasiamis (24:08)
Hmm. What would be the hardest part of this stroke journey for you that that you kind of would be able to recall from all of this journey, the thing that was the hardest for you to deal with or overcome or or be challenged by?
Jeff Manuel (24:24)
Still
still deal with the post stroke pain. It’s the hardest.
BIll Gasiamis (24:30)
The fatigue.
Jeff Manuel (24:31)
The the constant pain.
BIll Gasiamis (24:33)
the pain. Yep. Is that on your left side?
Jeff Manuel (24:35)
And
arm, leg and shoulder, yeah, all on the left side.
BIll Gasiamis (24:39)
Do they medicate you for that? Do they try and give you some kind of pain relief?
Jeff Manuel (24:43)
No, I found my own.
More medicine.
BIll Gasiamis (24:45)
Understood. And is that manageable then now the pain? Does it kind of help ease the pain?
Jeff Manuel (24:50)
Yes, it does.
BIll Gasiamis (24:51)
Okay.
Jeff Manuel (24:52)
It eases it away for me and and helps me not think about it.
BIll Gasiamis (24:57)
Uhhuh. Understood. So is the smoking related to medic medicinal marijuana, perhaps?
Jeff Manuel (25:04)
No, I ’cause I don’t smoke it. I it’s take the gummies.
BIll Gasiamis (25:07)
okay. So it’s it’s medicinal marijuana then.
Jeff Manuel (25:09)
Yeah. Well it’s all legal in Canada, so
BIll Gasiamis (25:11)
The the Yeah,
it’s legal almost everywhere now. And it sounds like it’s actually very supportive of a lot of people that gummies sin seem to be a good alternative to you know, like the the Yeah. Or and also for some people it seems to be a better solution than the pharmaceutical painkillers.
Jeff Manuel (25:25)
Smoking it. Yeah, these are
I I g I s had to stop taking my pharmaceutical pills altogether.
BIll Gasiamis (25:40)
Why were they causing
Jeff Manuel (25:41)
After af
after four years I should know what’s happening to my body.
I didn’t feel no but it no better after four years of taking the drugs. So I decided no more drugs.
I’ll just have a gummy, figure out how I feel.
BIll Gasiamis (25:53)
Yeah.
Jeff Manuel (25:57)
Yes, this is working. I like it.
BIll Gasiamis (25:59)
How often do you have to take it?
Jeff Manuel (26:01)
Mm.
Wait, four four times a day.
BIll Gasiamis (26:03)
Okay. So you notice when it’s starting to wear off?
Jeff Manuel (26:06)
Yeah, it’s only when it comes to extremes that it would take another
BIll Gasiamis (26:09)
And it helps you sleep, I imagine.
Jeff Manuel (26:10)
It helps the whole body.
From your digestion and it has helped me.
BIll Gasiamis (26:14)
Yeah.
Jeff Manuel (26:14)
And
actually sleep also.
Sleeping eight, nine hours a day.
BIll Gasiamis (26:17)
Wow, that’s great, man.
Do you have a lot of contact with your medical team, the people who helped you through the early phases? Do you have regular follow ups or anything like that to check in with them?
Future Aspirations and IndependenceJeff Manuel (26:28)
No, sir.
I haven’t once.
BIll Gasiamis (26:30)
Does does the facility there have medical professionals that you can access?
Jeff Manuel (26:33)
Yes. Does the doctor assigned to me?
That comes every supposed to come up every three or four weeks.
BIll Gasiamis (26:41)
So what’s one of the things that you hope to do after you graduate from being in assisted care to being in independent living?
Jeff Manuel (26:52)
It’d probably have to be assist lived against.
BIll Gasiamis (26:54)
So again.
Jeff Manuel (26:55)
Assisted living.
BIll Gasiamis (26:56)
Yeah. My question was when you do kind of graduate from being in the assisted living to being independent in your own place again, what’s something that you’re kind of looking forward to be able to do?
Jeff Manuel (27:10)
The independence
BIll Gasiamis (27:11)
Can you have guests come and visit you at the facility that you’re at and hang out with you for the day?
Jeff Manuel (27:18)
Yeah. And if I want, I can transfer in the vehicle and we can go somewhere else.
BIll Gasiamis (27:23)
Understood. So Jeff, somehow you came across my podcast. What was it that made you do the search and find it?
Jeff Manuel (27:29)
Well, as soon as I was when I was in the hospital I started searching up stroke and disability and everything started popping up on my YouTube page and then I seen podcast recovery after stroke, so I started watching it and within the last year seen so many other people going through what you you’re going through.
It inspired me. It really did help me.
BIll Gasiamis (27:59)
And then you thought it was time to tell your story.
Jeff Manuel (28:00)
Yes.
BIll Gasiamis (28:01)
Yeah. Good move. I really appreciate you reaching out, letting me know what was happening to you, what you were going through, and also joining me on the podcast. Thank you so much for your time.
Finding Community and Sharing StoriesJeff Manuel (28:13)
Thank you, Bill.
Bill Gasiamis (28:14)
Well, thanks so much to Jeff for coming on the show and being so open about what the last four years have actually looked like. The hospital stay, the rehab, the setbacks, and the mindset shifts that came with all of that. If there’s one thing to take from this conversation, it’s Jeff’s line. I’d like myself again because I know I’m a good person. That’s recovery in a sentence. Not just getting your body back, but finding your way back to yourself.
If you’re feeling stuck in your own recovery the way Jeff once did, I offer one-on-one coaching for stroke survivors, structure, accountability, and support from someone who’s lived it. You can apply at recoveryafterstroke.com/momentum. If you’re a parent navigating your own recovery or you know someone who is, please share this episode with them. My book, The Unexpected Way That a Stroke Became the Best Thing That Happened.
is now available at recoveryafterstroke.com/book. And if this show has helped you, you can support it at patreon.com/recoveryafterstroke. Thanks for listening. I’ll see you in the next episode.
The post Jeff Manuel: Raising My Kids Through a Stroke and Learning to Like Myself Again appeared first on Recovery After Stroke.
Aphasia Communication App: How One Brother Gave a Stroke Survivor His Voice BackFor four or five hours, Robert Schmidtbauer’s younger brother lay on the floor of their Wisconsin home, unable to get himself up. Robert found him when he got home from a late shift driving cabs. His brother had been drinking that night, but this wasn’t alcohol; it was a stroke, one that would put him in the University of Wisconsin Hospital for three weeks and in rehab for six months.
His brother was already living with ataxia, a rare progressive condition that had taken his ability to walk and had begun to affect his speech. The stroke made it dramatically worse. Today, unless you know him well, you’ll understand only 60 to 70 percent of what he says. It’s usually the end of a sentence, the last few words, the part that carries the point that disappears.
Robert became the translator. For years, every visitor, every relative, every tradesperson needed him in the room to fill in the blanks. Then he built something better: an aphasia communication app called Larry’s Speakeasy, priced at nine dollars for life, now used by people in 20 countries.
When the Speech Problem Has No Official NameOne detail of this story will be familiar to many stroke families: Robert’s brother has never been formally diagnosed with aphasia. The doctors attributed his speech difficulties to the combination of ataxia and stroke and left it there. After a year of speech therapy and his own reading, Robert concluded there was “probably some of that in there,” but no clinician ever gave the problem a name.
That matters, because a diagnosis is often the doorway to resources. Without one, nobody hands you a communication aid, a device funding pathway, or even a list of options. Robert’s brother got speech therapy two or three hours a week while it lasted, some practice phrases to take home, and nothing else.
The Gap Nobody Warns Stroke Families AboutRehab ends. The communication problem doesn’t.
When Robert’s brother came home, the brothers developed their own system: Robert would catch 90 percent of a sentence, ask him to repeat the rest up to three times, and then ask him to spell the words letter by letter. That was the system for years. Robert credits his stint teaching English online to students around the world for training his ear to listen closely.
But the system only worked when Robert was in the room. The moment that changed everything was ordinary: a new housekeeper came to quote on cleaning, and Robert’s brother, who runs the inside of the house, couldn’t make himself understood on the details. Robert stood in the middle, finishing sentences. He’d felt like a “third wheel” through his brother’s rehab, looking for a way to genuinely help. Standing in that kitchen, he found it.
“I had one person on my wing that no one else in the building could understand but me. And even I had a 50% chance of understanding what he really wanted.” — a care facility director, on why a tool like this matters
What Is an Aphasia Communication App?An aphasia communication app is software that speaks for a person whose own speech is impaired a modern, affordable form of what clinicians call AAC (augmentative and alternative communication). Larry’s Speakeasy does two things, deliberately kept simple:
Type-to-speak. If your hands still work, you type any phrase or sentence, and the app says it out loud.
One-tap phrases. For people with limited hand function, pre-made buttons cover emergencies (“I need to go to the bathroom,” “call the doctor”) and everyday phrases hello, goodbye, and a growing list Robert adds to as users suggest them.
The market Robert walked into explains why he built his own. At the affordable end, there’s roughly one comparable app at around $13. After that, the next step up starts near $150 and climbs to $7,000–$8,000 for dedicated equipment that requires training and support to operate. Between a cup-of-coffee app and a small car’s worth of hardware, there was almost nothing.
Robert priced Larry’s Speakeasy at $8.99 once, for life. “It’s not here for me to get rich off of,” he says. “It’s my brother, and I want it to help.”
Built With AI, in Days, by a RetireeRobert is 67, with a background in television and radio rather than software. He’d spent months learning to work with AI tools and, in his words, cussing and swearing at the computer. When the housekeeper moment landed, he posed a different question to the AI: how can I help my brother’s speech? And had a working version running within about two or three days, refined over the following months.
That’s worth pausing on. The tools to solve a real disability problem at kitchen-table scale now exist for people who aren’t programmers. A determined care partner built, tested, and shipped an aphasia communication app from rural Wisconsin no company, no funding, no advertising. Around 260 people across 20 countries have tried it, and it’s listed as a resource on the National Aphasia Association website.
More Than an Emergency ButtonThe use cases stretch well beyond the kitchen:
Therapy practice. Practice phrases from a speech pathologist can be loaded into the app and drilled at home with or without a partner.
Video calls. Open the app in one window and Zoom or FaceTime in another, and a person who can’t speak clearly can hold a conversation with family anywhere in the world. Robert saw his own mother’s isolation in a care facility years ago; this is his answer to it.
Care facilities. An iPad on a care cart could let staff understand residents nobody else can and document requests, which protects residents and facilities alike.
Where to Find ItThe app lives at LarrySpeakeasy.com, with a seven-day free trial before the one-time $8.99 purchase. Try it, and if it helps, it helps, as Robert puts it; there’s no push.
Stories like Robert’s are why this podcast exists: ordinary people refusing to accept the gap between what the system provides and what recovery actually needs.
If that resonates, my book, The Unexpected Way That A Stroke Became The Best Thing That Happened, shares ten tools for recovery and personal transformation drawn from my own stroke journey and hundreds of survivor interviews; you’ll find it at https://recoveryafterstroke.com/book. And if this show has helped you, you can support it at https://patreon.com/recoveryafterstroke.
This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
Robert Schmidtbauer – Building a Voice for My Brother (Interview)After a stroke, Robert’s brother lost clear speech and had no tools to cope. So Robert built one: a simple app that speaks for those who can’t.
Highlights:
00:00 Introduction – Aphasia Communication App
01:21 Challenges in Communication Post-Stroke
05:17 Stroke Experience and Recovery
12:20 Communication Challenges and Solutions
17:43 Creating Solutions Through AI
18:03 Introducing the Aphasia Communication App
21:13 Expanding Accessibility in Care Facilities
27:14 Final Thoughts and Resources
29:19 Bridging Communication Gaps
30:14 Resources for Stroke Survivors
Transcript:
Introduction – Aphasia Communication AppRobert (00:00)
If I ask him three times, I still can’t understand it. Like, spell it for me. You know, so I mean, that’s kind of how we got by until I developed this app.
Lacunar Stroke New Research (00:10)
Hello, everyone, and welcome to another episode of the Recovery After Stroke Podcast. Before we get into it today, I want to say a massive thank you to all my Patreon supporters and to everyone who supports this podcast. You are the reason this show keeps going. And I appreciate every single one of you. If you’d like to help keep these episodes coming, you can support the show at patreon.com/slash recovery after stroke. And if you’re looking for tools to guide you,
On your own recovery, my book, The Unexpected Way that a Stroke Became, the best thing that happened, is available at recovery after stroke.com slash book. Now, today’s episode is a little different. My guest is Robert Schmidtbauer. And Robert is not a stroke survivor, he’s a
care partner. His younger brother was already living with ataxia, a rare condition affecting his muscles and speech, when a stroke six or seven years ago made communication between the two brothers harder than it had ever been. In this conversation, we talk about what it’s like to be the person who translates for someone you love, what happens when rehab ends
and the communication problem doesn’t? And what Robert decided to do about it. Something that might genuinely help other families in the same situation.
Challenges in Communication Post-StrokeBIll Gasiamis (01:30)
Robert Schmidtbauer welcome to the podcast.
Robert (01:33)
Thank
BIll Gasiamis (01:33)
can you give me a little bit of a rundown on you and your relationship with your brother before he had a stroke?
Robert (01:42)
My brother’s nine years younger than I am, so he’s 56, no, 58 now. And we’ve been living here. He originally got out of high school, went to travel school in Minneapolis, Minnesota, and lived there for a number of years. He has a taxia, and he moved home.
to my mother’s house. Let’s see, we’ve been here 16 years now in this house living together. And he moved home about 20 years ago. Not quite, maybe like 18, 18 and a half. The ataxia took away his ability to walk. I’m not sure if you’re familiar with ataxia, but it’s kind of like in the muscular dystrophy realm. And it’s very, very, very rare.
he attacks your muscles. depending on the seriousness and the kind, there’s like 20 different kinds. You probably wind up dying from it because it slowly affects your muscles. And the first things to go usually are your extremities. In his case, it was his legs and his speech. So when he moved home, he already
had a slight problem talking, not real bad, but my mother built a house and it was very small, just one level.
so that she didn’t really have to walk up and down stairs and that type of thing. And so he was basically sleeping in the easy chair when he moved back home. And I lived across the street. So I said, come on and move in with me, because I’ve got this big house. I was a single parent at the time. I have one son. And I said, there’s plenty of room here. You can have a bedroom and live here.
Stroke Experience and RecoveryAnd so we lived here. The story behind him and the stroke, I was at the time working as a cab driver at a resort town north of here.
And so I would never usually get home on weekends until like four or five in the morning. And I came home, I found him on the floor. And so he had a drinking problem at that time. And I asked him what was wrong. And he said, well, I’m drunk. I well, how long have you been here? he’d been on the floor for like four or five hours.
My brother is probably 6’1″, or around 6’2″, 230, 240. I couldn’t lift him up. We bought this house as a duplex. My girlfriend at that time lived and rented from us a basement apartment. Even with the both of us, we couldn’t.
get him up. So called the ambulance, we got him in and it obviously wasn’t alcohol, although he had been drinking. He wound up going to, we live in the state of Wisconsin and Madison is in the south part of the state, which is our state capital. They took him to the hospital here and then they flew him to Madison and he wound up
there in the University of Wisconsin Hospital, which is a very big progressive type hospital. And he was there, I think about three weeks before he came back to a nursing home here to recover. And so his recovery before he finally got home, I would say, going back to memory, we never really wrote it down, but probably about six months. He was in the nursing home for a good
three, four months and then in an assisted living type situation where he had his own room, didn’t have to share it, was going through treatment and rehabilitation before he got home. And so then he came and when he was done with that, then he moved back here. So was about a six month process.
BIll Gasiamis (05:37)
How long ago was a stroke?
Robert (05:40)
exactly. I couldn’t tell you to be honest Bill, but somewhere in the realm of six to seven years. I go back, I ran a bar at one time and I’ve been gone from there for four years and this was before that. So I would say between six and seven years ago.
BIll Gasiamis (05:57)
Before COVID.
Robert (05:59)
Yeah, before COVID.
BIll Gasiamis (06:01)
Okay. So when he came back from rehab and the assisted living and came to live at your house, what kind of deficits was he living with?
Robert (06:13)
Excuse me. He still couldn’t walk. He was already in a wheelchair at that time with a taxia. And that didn’t really change much. was worse, obviously, when he first had the stroke, but the rehab helped him to get back to, I would say more or less where he was before the stroke. As far as being ambulatory, he can still stand up. He can still…
function, get into counters and cupboards and things like that. He just, the legs, he just can’t walk. He could crawl on the floor if he had to. And his arms and everything still work, so he could still type. again, this was through rehab, but he pretty much got back to where he was prior to that, except for the speech.
the speech became noticeably worse. I would say even at this time, at that time it was really bad, at this time unless you know him and live with him or have known him previously, you’re probably going to understand somewhere between 60 and 70 percent. It’s usually the last part of a sentence or thought is what
Most people have difficulty understanding.
BIll Gasiamis (07:30)
So is it the ataxia and aphasia that he’s dealing with?
Robert (07:34)
You know, officially he’s never been diagnosed with aphasia. It’s probably more to do with the ataxia combination with the stroke. So the doctor has never really the prognosis or whatever you want to call it. They never really diagnosed them as having aphasia. But after reading up on it and going through therapies,
you know, for speech and other things. And that continued for the better part of a year. It’s kind of obvious that there’s probably some of that in there. But as far as a medical diagnosis, official medical diagnosis, we never really got that meaning from any of the doctors.
BIll Gasiamis (08:17)
Got it. So he came back, he would have had some needs f and you would have had to support him with those, if obviously the walking and then and then whatever other needs. So in that communication early on, were you guys able to actually communicate and you understand what his needs were and help him with what he was asking?
Robert (08:40)
Yes, there was a point and you being a strokes arrival, you know, I have no idea. have AFib and so, you know, kind of runs in our family. So I knew some of what he was going through, but obviously I don’t know what anybody who’s had strokes, you know, have to go through on a daily basis. watching him, there was a point, especially in the nursing home immediately after in the first several months.
I would say that there was major depression. There was a battle. I often quote a movie. There was a line that black actor, what was his name? Older guy that played God. Anyway, came on said one time, you never get busy living or you get busy dying. And so I mean, there came a point.
after like the first month where we kind of had a come to Jesus conversation at the nursing home and it was like, okay, because he wasn’t following their recommendations too much. didn’t really, the therapy and stuff, wasn’t too thrilled and excited to do that. so I mean, through this conversation, it was like, okay, like, look, you know, either.
You try and make the best of the situation and improve or I can’t help you. It’s like alcoholism or any other drug disease. You really have to want to do it, I think, yourself.
And so he’s been dry now for, boy, well, since the stroke, probably close to 10 years now. I mean, he slowed down enough after the stroke, he quit completely. But so, yeah. So I mean, that, you know, the communication.
I could communicate with him in hospital. It was harder, obviously, but, you know, I could still understand him. The one thing that helped me out throughout the period that we lived together, especially after the stroke, was I taught English online. So I talked to people from Saudi Arabia. I talked to people, you know.
from various countries around the world. And that really helped me because I had to listen closely to them. But there are still times where I will ask him, I get 90 % of it and we get to the last couple of words and I’ve got the gist of it, but it’s like, I don’t understand the last words.
He’s come out like, okay, ask me three times. If I ask him three times, I still can’t understand it. Like, spell it for me. You know, so I mean, that’s kind of how we got by until I developed this app.
BIll Gasiamis (11:23)
Yeah. And it it’s interesting, like you guys all went through rehab, left from hospital, came home, he had a speech issue, and yet you guys didn’t weren’t given a tool or something to help you guys communicate at all. It wasn’t even like a thought for anybody to do that.
Robert (11:45)
No, there was not. I mean, he had speech therapy when he went to the hospital, but that was an hour, three times a week or two times a week. I mean, it wasn’t an everyday type of thing. So yeah. then exercise is when he came home from there that he would, know, phrases and words and stuff that the therapist would want him to practice at home. And even that was…
somewhat of a struggle, because we’re kind of, no disrespect to nationalities, but we’re kind of pigheaded Germans.
Communication Challenges and SolutionsBIll Gasiamis (12:20)
that being said, you come home, you haven’t got the tools, you’re trying to help.
your brother, there is times where you can’t understand what he’s saying. And you think, I know, I’ll create my own solution for this problem. And tell me about th the background that you had that helped you solve that problem and the solution that you created.
Robert (12:43)
Yeah, well, if we go back to, you know, when he came home, because this is obviously been recent, right? It’s because of my background was in television and communications. I worked in television and radio. And so I enjoyed playing with computers when he came home because, you know, we were fairly close family and knew him. I just let him do his thing.
you know, and if he asks for help whenever I was there for him. But I always felt like a third wheel going through, you know, the stuff from him, his his rehab. I take him there and do it, but there wasn’t much except for like the speech stuff to help him be repetitive on that. So it felt like kind of a third wheel. So it kind of settled into
a pattern, you know, unless he needed help, he’s pretty self sufficient. He has a CNA that comes over a couple times a week to make sure that like, when he takes a shower, he doesn’t fall, you know, that that kind of stuff helps with the dishes or cooks a couple meals and puts it in the refrigerator. But I was looking for ways, you know, and trying to think of what a person could do.
Creating Solutions Through AIWell, So I still work, you know, part time. And through television, I had my own production company and did things on the side all the time. And so I like to be creative. And
a friend of mine who lives in Chicago had a business and we started playing around with AI for about the last six months now. And it’s not as easy as some people say it is, you know, and especially to learn how to use it.
So we started playing around with it. And the frustration level of learning AI got to me after we were into it two or three months.
you know, learning how to prop things and explain things to get the result that you wanted, I think is one of the biggest keys for that. And not to go off on a tangent here, but this is how the app and working for my brother really came about. I just needed a break. So it came to a point where I’m cussing and swearing.
swearing back at the computer and AI and I’m like, no, no, no, no, we tried to do this like five times. This is really simple. You just change this one thing and you’ve got what I want. But every time I asked it, would change something else. And so I’m like, OK, I still want to continue to learn how to use AI, but I got to just put that aside for a minute and take a day off and not work on that. And so we happened
I’ve had, I was a single parent. My son was 13 months when my ex-wife left. And so I raised them by myself. And I’ve had a housekeeper that’s been with me for like 20 years. And she is getting older. She’s like in her late 60s, early 70s now. She fell and she busted her hip. And so we had to find another housekeeper while she was recovering. You know, I said, if you want to come back, you’re more than welcome to, but you know, we’ll find someone else in the meantime.
And so we had someone come over to the house and give us a quote on what it would cost us to just tidy up the kitchen and the bathrooms and stuff, because I still work about 30 to 35 hours a week. the same thing that happens over and over again when people and relatives visit us with his speech happened with her. And when I’m around, I’m the go-between.
I mean, it’s kind of they understand the 60 % of the first part of his answer. And because he’s around the house all the time and doesn’t leave it, I leave those kind of decisions that I take care of the outside and the lawn and those things that I leave the inside of the house to what he wants. Because he’s the one that spends most of the time, you know, in here. And so I’m answering, you know, I’m filling in the blanks for her. You she’s like, okay.
I understand you want the bathroom clean this way, but what was that last part? And so I finished the sentence. I’m like, well, he said this, you know? And it kind of dawned on me at that time, you know, going back to the third wheel feeling, kind of dawned on me at that time. I’m like, okay, what if I asked AI a couple of questions about how I can help him, you know? I mean, and help him with his speech.
And that’s basically how the app came about. She gave us a quote that was here for half hour, and that happened half a dozen times. And so after she left, I’m like, all right, I still want to try and continue to learn this. And maybe by doing a different project that I’m not just completely frustrated with at the moment, I can help myself with this other project and help him all at the same time. And so.
I just posed the question to you, I use Claude mostly, and I just posed the question to Claude, and it gave me the answer. And from that point on, we, over the last, it’s been a little over two months, two and a half or three months, we refined it, probably ended up in running in about two or three days.
Introducing the Aphasia Communication AppBIll Gasiamis (18:03)
So fundamentally, can you tell me how the app works, what it is and how it works specifically?
Robert (18:11)
It’s basically whatever you want it to be. And it has everything to do with how functional you still are. It’s not designed to be an end all be all. It can be. If you can’t speak at all, it can be. Because you can either type, depending on your conditioning. Do your hands still work? Can you type?
So you can type, there’s a line there as you see, you can type in whatever phrase or sentence that you want, and then it will speak out loud what you type in. And then there’s also for people that are limited in their use of their hands, pre-made phrases. And they range from emergency phrases, I need to go to the bathroom, you need to call the doctor.
you know, personal phrases, hello, goodbye, you know, things that, and I just thought up as many as I could. And we’ll add to that as we move through stuff and anybody that has suggestions, like contact, and that’s probably what’s screwing something up is I didn’t have a contact on there. So my email’s on there now that if you have an idea, please feel free to, you know, contact me and we’ll try and put something in for that.
So that way, you know, if you have an emergency or you have like the housekeeper, you know, like the situation we are and you know, you need something, all you do is just click on the button and then it will speak that phrase out loud. I just wanted it very simple, very straightforward. And so, you know, it’s designed in the sense of
doing it that way. If you want to go to a medical definition of it, you could use it and substitute your own voice completely if you want. But the idea is probably more of a helping situation where anybody going through therapy, like watching my brother go through therapy and coming home with phrases and words that he had to, you could literally
you know, hit the button, that phrase would come up and you could practice that or, you know, the speech therapist could give you a list of things that could, if you could still type, you could type that in and then work with that at home. If you didn’t like me and my brother, add me to, you know, to be here to rub through that kind of stuff. But if you were alone or someone couldn’t get over it, you could use it in that realm. And depending on how your rehab went, you
could be useful for six months. It could be useful for a lifetime. again, that’s why the prices where it’s at, it’s not here for me to get rich off of. want people to, you know, I want it to help people. It’s my brother and I want it to help. So, you know, if you can afford it, it’s $8.99, $9. And that’s a lifetime deal. So once I get this problem.
BIll Gasiamis (21:00)
Yeah.
What’s the price?
Yeah.
Expanding Accessibility in Care FacilitiesRobert (21:13)
cleared up that I didn’t know about. You can use it for however long it’s there.
BIll Gasiamis (21:19)
Yeah, nine dollars. I it thirteen
Australian dollars. It’s if it it’s well worth it. Like if you get a you get a tool for nine dollars and you use it forever, like that’s perfectly fine. No issue with that whatsoever. so it it’s
Robert (21:31)
You know, we
are doing something as far as facilities are concerned. I’ve reached out to nursing homes, assisted living places, and I haven’t heard back from any of them yet. I’ve gotten some response on it. It seems favorable, but I haven’t got into any kind of negotiations or anything with them. One of my ideas is like going through with what my mother went through with her dementia, right?
Here in Tomahawk, there’s one, two, three, two nursing homes and an assisted living place. And so my brother and I and my son, they had a couple rooms where instead of being out in the general population area with people all around, we could book a room that had a television and a couch and a table and stuff. And we would bring
order a pizza or bring in food and spend a couple hours as a family where we weren’t disturbed. And my idea for them is twofold. Number one, seeing as how you could use it on an iPad or a tablet. If you had, I have one of the people that helped me here give me information. I work for a group called Tom Ocunary Interfaith Volunteers. it’s a, we give free rides to senior citizens and people.
with disabilities. they can go to the doctor, they can go to the store. And one of the guys was the director at one of these facilities. And he came through to become a director all the way from just being a CNA, which is a very low paying job. It’s the people who clean up the messes, let’s just say, you know, to running the facility for this company. And, you know, he’s like,
I had one person on my wing that no one else in the building could understand but me. And he said, even I had a 50 % chance of understanding what he really wanted. To have this, say an iPad that you could have hooked onto your cart when you’re making rounds or something, he said, would have been invaluable. And so not only in that respect to help them with clients that they have, but then they would also have
like a legal transcription of something in case something a family said that so and so did this to so and so that was bad or they had a problem of some kind. It could be documented. The other aspect of that was with these rooms I was talking about was, you know, you could literally take the computer and open up just like we are here. You’re going to open up a couple of browser windows. You could put Larry’s
you know, speak easy, the interface in one window, you can open up FaceTime on Facebook or Zoom or whatever, you know, communication, let’s say that your daughter lived in Phoenix, Arizona or New York or somewhere. You could get them on the line and you can literally have a conversation back and forth because it would speak out loud through the speaker. And if you were, again, able to type and or hit the phrases, you know,
that person over there would hear it come out of the computer. And so you could then keep closer tabs on your relatives. Because I think one of the bigger things, having this experience with our mother, was the isolation and the loneliness. mean, in those days, which is now 15 years ago, I went there every other day for an hour or two.
I still had to work and still had other things to do. So, you know, to be able to come home and just sit down at a computer and talk to them would have been real nice.
So in a sense of, you know, keeping in touch with your family and that type of thing with friends or whatever. Like my brother was a travel agent in Minneapolis and he’s still got two or three of the people that he worked with that are still in his life. So to be able to, you know,
do that and you can hold a conversation with them and catch up and things. So I think that would be those two things combined I think should be, how do I put it, attractive to a facility, not only for the client but also for the facility itself.
BIll Gasiamis (25:45)
Yeah, yeah. To be able to take an iPad and press a button and have a basic conversation at such a low cost to entry, like that’s really good. I imagine there is already software that’s similar that would
Robert (26:00)
There’s
one that’s, and I can’t remember the name of it, so you’ll excuse me. hope. But there’s one that’s about $13 or $14 right around $12.99 or $13.99. That is similar. But from that point on, the next step up is about $150 all the way up to like $7,000 or $8,000 where you actually have to have equipment at home that…
you need to learn and or have help using. So there’s really a pretty big gap in that. That’s just my opinion. My research isn’t paid. There could be other things out there. I know there’s a lot of text to speech and a lot of the tablets and stuff right now. just to be dedicated to, excuse me, you know.
people with this, you know, aphasia with recovering from stroke. So I really thought, you know, when I, when I’m a
My brother showed him, I’m like, wow, this could really help not just him, but other people.
BIll Gasiamis (27:05)
Yeah, understood. And Robert, if somebody wanted to get a copy of this or to check it out, where would they go?
Final Thoughts and ResourcesRobert (27:14)
Speakeasy.com and again, like I said, there’s a free trial. You could just go there and check it out. And if that, you you decide over the course of that free seven days, if that would help you or not help you, you know, and that way then there’s, there’s no push, you know, I think that’s a week. And so if you’re truly interested in it, you have to remember that, that there’s only seven days to try it out and use it.
If it helps, it helps, and if it doesn’t, that’s fine, you move on.
BIll Gasiamis (27:43)
That’s cool. Yeah.
Yeah. Very good. Robert, well, I really appreciate you sharing your story and your challenges that you guys have both had to overcome and the development of this little basic simple tool that solves a problem and and reaching out so that we can let people know so that if they need to solve a problem like that, that is similar and they’re happy to pay nine
ninety nine US dollars, then that that might help them. That might be a good way to go about solving a little problem well, a big problem for people in in their home.
Robert (28:21)
You know, we’ve, it of, asked me something that I did here just recently because we are on the, NAA, the National Aphasia Association website as a resource. We’re on a smaller, it’s called the Stroke Foundation out of Texas, started by a family very similar to your case, a family that has suffered stroke in the family, and it’s a family-run foundation.
We have 300, almost 260 something people that have tried it across without any type of advertising just by talking on Facebook and supporters. And also we’re people from 20 different countries now have tried it. So, you know, I welcome them all, you know, just try and if it helps, good for you. And I’m happy that.
you do something to help anybody.
BIll Gasiamis (29:17)
Yeah. Thank you, mate. Thank you for joining me on the podcast.
Bill Gasiamis (29:19)
Well, there you have it. My conversation with Robert Schmidbauer. A huge thank you to Robert for reaching out and for sharing his and his brother’s story. What stays with me from this one is how simple the whole thing is. Two brothers with a communication gap that the system never closed. And instead of waiting for permission or a diagnosis, Robert sat down and built the tool himself. Nine dollars for life because it’s his brother and he wants to help.
If you or someone you love is dealing with speech difficulties after stroke, head to the show notes right now. You’ll find the link to Larry’s Speakeasy there and the app that Robert built at Larry’s Speakeasy.com. There’s a free seven-day trial so you can see it for yourself whether it helps before you spend a cent. And while you’re there, if the episode gave you something, like it, leave a comment.
Share it with someone who needs it and subscribe so you never miss another episode. Every one of these things helps more stroke survivors and their families find this show. If you’d like to go deeper on Aphasia, check out my earlier conversation with Tracy Bode, Aphasia Help After Stroke At recoveryafterstroke.com/slash Aphasia Help After Stroke. Tracy Bode. The links will be in the show notes.
My book, The Unexpected Way That a Stroke Became the Best Thing That Happened, is available at recoveryafterstroke.com/book. And if this show has helped you and you can support it at patreon.com/recoveryafterstroke I would deeply appreciate it. Thanks for being here. I’ll see you on the next episode.
The post Robert Schmidtbauer – Building a Voice for My Brother appeared first on Recovery After Stroke.
Walking After Stroke: What Your PT Knows That Your Doctor Doesn’tA doctor walked in, ran a reflex test, and told the patient they would never walk again.
That same day, a physical therapist from Dr. Kory Langwell’s team arrived. The patient was in tears. And then they walked 70 feet.
“I hope you go back and tell that doctor,” Kory said, “that they missed that.”
Dr. Kory Langwell is a Doctor of Physical Therapy with over 15 years of experience. He runs a mobile home therapy practice across Southern California, and now coaches stroke survivors worldwide through his virtual program at Unlimited Potential Physical Therapy. In episode 410 of the Recovery After Stroke podcast, Kory broke down the realities of walking after stroke what’s actually possible, where the system fails survivors, and what a good physical therapist knows that most doctors don’t.
The Moment the System StopsFor most stroke survivors in the United States, recovery starts with intensity. In the hospital, you might receive three hours of therapy a day. Then you go home.
Within weeks, that drops to thirty minutes, once or twice a week.
“Insurance doesn’t know when your brain stops recovering,” Kory says. “Therapy ending doesn’t mean progress ends.”
The problem is that for many survivors, the message lands the other way around. When the funding stops, the belief follows: that recovery is over, that this is where they plateau, that there’s nothing left to do. That belief, more than the stroke itself, can stall everything that comes next.
The Plateau Is Not a Full StopOne of the most damaging phrases in stroke recovery is “you’ve plateaued.” It implies that the brain has reached its ceiling, that whatever function you have now is what you’ll have forever.
Kory pushes back hard on this.
“I’ve seen progress years, decades, 10 to 20 years after a stroke. Arms, hands, legs, walking ability. People just get fed up and stop looking for resources.”
What a plateau usually means is that the current approach has stopped working, not that progress itself is impossible. The clinical response isn’t to discharge the patient. It’s to audit what they’re doing and change something. Different exercises, different load, different feedback. Reassess in six weeks. See what moves.
Walking After Stroke: Why More Isn’t Always BetterWalking after stroke is where survivors often get their first taste of both independence and confusion. The instinct, and it’s a good one, is to walk more. Further, longer, more often.
But Kory draws an important distinction between the acute stage and everything that comes after.
In the early weeks post-stroke, more isn’t always better. If someone can walk five steps, pushing them to twenty-five on back-to-back days may overtax the neurological system rather than rebuild it. Fatigue compounds quickly. Quality collapses. And when quality collapses, the brain reinforces the wrong patterns.
“I’d rather have somebody walk 50 feet really well than 150 feet terribly,” Kory says.
Visual feedback changes this completely. When survivors watch themselves walk in a mirror, or on a phone recording, they often see something very different from what they feel. Bill Gasiamis described exactly this: convinced his running gait was dangerous, he watched the footage and found it was far better than he’d thought. The problem wasn’t the movement. It was the feedback.
Once a survivor moves into the chronic stage months or years post-stroke, the calculus shifts. Walking remains one of the best exercises available. Kory also recommends walking backwards in a safe environment like a hallway or near a kitchen sink: it challenges balance, engages the brain differently, and creates new neurological input.
Why Falls Happen – And What Actually Prevents ThemFalls after stroke aren’t random. They follow a pattern.
The clinical term is proprioception: the brain’s sense of where the body’s joints and limbs are in space. After a stroke, this system is often disrupted. Survivors may not feel their foot on the ground, or may not register that a leg isn’t bearing weight the way it needs to.
Add a divided attention task carrying a plate, thinking about turning off the television, reaching for something, and the risk multiplies immediately.
Bill described this directly: he’d made a sandwich, sat down, finished eating, and went to stand up. His attention was on getting the plate to the sink without dropping it. His left leg wasn’t registered as being on the floor. He fell before he’d taken a step.
The countermeasure is simple: stop, feel the floor, confirm the leg is active before moving, then carry the plate. Step by step, not simultaneously.
Foot Drop, AFOs, and Electrical StimulationFoot drop, where the muscles that lift the front of the foot are weakened or uncoordinated, is one of the most common walking challenges after stroke. Many survivors are placed in an AFO (ankle foot orthosis) to manage it.
Kory’s view on AFOs is measured: they’re a tool, not a sentence. Whether to wear one, when, and whether to eventually stop using one depends entirely on the individual.
“Take it off every once in a while if you’re in a safe environment,” Kory advises. “That gives new input to the brain a chance for things to improve.”
Electrical stimulation is another tool worth exploring. Kory recommends starting with an affordable unit available on Amazon for around $40 to test whether the technique produces results before investing in higher-end systems. You can find Kory’s recommended unit at linktr.ee/unlimitedpotentialpt.
The “Life Athlete” MindsetKory calls his stroke survivor clients “life athletes.” Not because they run marathons or lift heavy, but because athlete thinking produces athlete results.
Athletes track. They audit their approach. They celebrate small gains. They adjust when progress slows. And they don’t let one bad assessment from one clinician define what they believe is possible.
“If somebody told you you’d never walk again, you can take that feedback and use it as motivation,” Kory says. “Or you can let it get you down. That’s up to you.”
What to Do With a Limiting PrognosisWhen a doctor says “you’ll never walk again,” it’s rarely cruelty; it’s usually outdated thinking. General practitioners have limited training in neurological rehabilitation. Some are still working from research that concluded recovery stops at six months or a year. That conclusion was drawn from patients who stopped therapy and stopped trying, not from the brain’s actual ceiling.
“I just want to leave the door open,” Kory says.
The research on neuroplasticity is clear: the brain continues to adapt when given the right challenge, the right environment, and enough time. A prognosis isn’t a prophecy. It’s a snapshot of what one clinician observed on one day. Walking after stroke real, functional, independent walking is possible far longer and far later than most doctors suggest.
And sometimes, it happens the same day they said it never would.
If this episode has helped you, Bill’s book The Unexpected Way That A Stroke Became The Best Thing That Happened shares the tools and mindset that made the difference across his own recovery.
If the Recovery After Stroke podcast has been valuable to you, you can support it financially at patreon.com/recoveryafterstroke.
This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
She Was Told She’d Never Walk Again – Her PT Proved Them Wrong | Dr. Kory Langwell (Interview)Dr. Kory Langwell on the therapy gap, foot drop, and why the plateau after stroke is a label not a limit.
Highlights:
00:00 Introduction – Walking After Stroke
07:24 Insurance and Therapy Limitations
11:22 Supporting Survivors and Caregivers
16:45 Community and Support in Recovery
26:57 The Impact of Electrical Stimulation in Rehabilitation
29:17 Walking: Quality Over Quantity in Recovery
30:25 Understanding the Stages of Recovery
36:39 Navigating the Challenges of Falling Post-Stroke
42:05 Setting Realistic Goals for Recovery
44:46 The Role of Medical Professionals in Rehabilitation
Transcript:
Introduction – Walking After StrokeKory Langwell (00:00)
So we had a client recently there.
Doctor told them they were never gonna walk again. And literally, like they our therapist showed up, the patient was in tears, and then they walked 70 feet with our therapist. And it was all because it was a doctor that didn’t know them. They did like some reflex testing and said, you’re hyporeflexic, you’re never gonna walk again. And then literally that same day walked 70 feet. I was like, I hope you go back and tell them,
BIll Gasiamis video 25, image (00:23)
Before we get into today’s conversation, I want to extend a genuine thank you to everyone who supports this show. Whether you’ve joined as a YouTube member, contributed through Patreon, left a review, shared an episode, commented, or picked up a copy of my book, You Are the Reason This Podcast Keeps Going. Today’s guest is Dr. Corey Langwell.
A doctor of physical therapy with over 15 years of clinical experience. Corey runs a mobile therapy practice across Southern California and now coaches stroke survivors worldwide through unlimited potential physical therapy, a virtual program built for people who can’t access the in-person care they need. In this conversation, we get into the gap that opens up the moment you leave hospital.
While the word plateau might be the most dangerous word in stroke recovery,
What physical therapists know about walking after stroke that most doctors do not, and what it actually takes to keep making progress, years or even decades post-stroke. If you’ve ever been told there’s a ceiling on your recovery, this episode is going to challenge that. Here’s my conversation with Dr. Corey.
BIll Gasiamis (01:39)
Kory Langwell, welcome to the podcast.
Kory Langwell (01:42)
Thanks for having me.
BIll Gasiamis (01:43)
Tell me a little bit about your background.
Kory Langwell (01:47)
Yeah, I’ve been a doctor of physical therapy for over 15 years and I’ve had my own mobile therapy practice for a little over five years. So helping people in their homes throughout Southern California with my staff of PTs, OTs, and speech therapists. And now we’re expanding to worldwide really with our virtual coaching program for people that have had strokes. So
BIll Gasiamis (02:12)
Worldwide. That’s awesome, right? So that’s where I found you on the TikTok app. And it’s a pretty decent channel to follow. Tell me just while we’re here and I remembered to ask, what is the TikTok handle?
Kory Langwell (02:14)
Yeah.
Yeah. Yeah, yeah.
It’s Dr. Kory Stroke Recovery PT and I can I can send you the link later on. But yeah, so I started two months ago and it’s been growing ever since. So
BIll Gasiamis (02:38)
Yeah, it’s really good because I think your information comes from the clinical background, something that I can’t do. I can put a lot of information out about my personal experience with stroke, what other people tell me about their experience, but your specific instructions around how to improve or how to do something differently or how to achieve an outcome with regards to whatever physical deficit people have after stroke.
Is really helpful. So for people who are watching and listening, go to TikTok and probably the other social media channels, yeah, Kory?
Kory Langwell (03:12)
Yeah, yeah, I started a YouTube recently, unlimited potential physical therapy. And yeah, I’m also on Facebook, Unlimited Potential Rehab. So yeah.
BIll Gasiamis (03:22)
Yeah. You’re one of those people.
I often get asked where can I find somebody that’s going to help me with my stroke recovery? I can’t get there or whatever. And I’m I’m often the middleman. People think that I know everything about everyone, especially from Australia to the United States, right? But what’s weird is I do know a lot of people and I can connect people. So it’s great that we connected and I found you. And I think it’s really important that.
Kory Langwell (03:39)
Yeah. Yeah.
BIll Gasiamis (03:50)
It’s your perspective and the way you think about recovery that’s different. And that’s why I reckon people A, should follow you and B, listen to this podcast episode. So don’t leave yet. F listen to the episode and then go and follow Kory on TikTok and all the socials. We’ll have all the links in the show notes. My first question is about the gap. Okay. So we’re often
Kory Langwell (04:01)
I appreciate that.
BIll Gasiamis (04:17)
Find ourselves as stroke survivors get sent home from hospital. Everyone does amazing things before we leave hospital. The care is amazing. They try and rehabilitate us as much as they can. They keep us alive. They send us home. But then the gap at home is we’re kind of left alone. Nobody to check in with us to make sure that things are kind of on track, that we’ve settled in. And it feels for a lot of people like recovery ends after therapy ends. But
Can you give us a bit of a your your thoughts on that?
Kory Langwell (04:54)
Yeah, usually at least here in the States, people go from getting three hours of therapy a day in the hospital to literally dropping down to thirty minutes once or twice a week.
So there is this huge gap where they just feel like they’re not getting enough and then that it really slows down their progress, or so they feel. and that’s where we’ve come in with our in-home care. But what I’ve seen is people just they need that accountability, whether it’s virtually or in person. And so that’s one thing that we really strive to do is just provide that that one-on-one support virtually. And also, you know, what I see with a lot of people is they think that, stroke recovery.
Stops at you know, three months, six months, a year. We’ll probably talk about this more later on. But you just got to keep challenging yourself, doing new things. And I find a lot of times people get stuck on just finding random things on the internet, and then they just they don’t reach out or have the support that they need to move forward and make progress. So grant you just don’t want insurance to tell you when therapy ends or when progress ends. So that doesn’t mean your brain just immediately is yeah.
Yeah, therapy’s done because insurance says it is and the brain just shuts off. I mean, I’ve seen progress years, decades, you know, 10 to 20 years after a stroke. I’ve seen progress with arms, hands, legs, general walking ability, you know, stuff like that. So it’s a lot of times they just people get fed up, they get frustrated, and then they stop doing or looking for resources. So
BIll Gasiamis (06:26)
Y the thing that you said is very interesting about insurance telling you when therapy ends. Now what they’re doing, what are they doing? Are they like I know what they’re doing fundamentally, right? They can’t forever pay somebody to have rehabilitation. And maybe they’re encouraged to pay them for as little as possible as well, because it costs money, right? So they they
Kory Langwell (06:49)
Yeah. Yeah.
BIll Gasiamis (06:53)
come up with some kind of a conclusion or whatever, and then they say to people, Well, y that’s about it. You’re not going to really improve any more than that. And we need you to we we’re going to stop funding it. So how does that conversation go from what you understand? And can anyone intervene in that moment and continue the therapy? Is there a way to kind of argue your case to get more therapy?
Insurance and Therapy LimitationsKory Langwell (07:24)
Yeah, it’s a tough one. So having worked in hospitals in acute rehab units, having worked in outpatient clinics, and then now as my own mobile practice in people’s homes, I’ve seen the whole spectrum of therapy and the issues that come along along each step of the way. in the hospital, you know, it used to be therapy they would get six to eight weeks in the hospital a lot of times here in the States. And now it it used it dropped down to like three weeks for a lot of acute rehabs, and now they’re pushing it down to like 10 to 14 days.
which is not a lot of time. And, you know, we used to be able to get people to near independence with a lot of their their skills, you know, the activities or ADLs, activities of daily living. But what I see now is a lot of times hospitals when I left the hospital world in November of 2021, at that point, it was like, let’s just get people to like minimum assistance, meaning they need about 25% or less, and let’s we gotta ship them out of here because it’s like it’s like a churn. It cause hospitals, to be honest.
They’re big business. They they are, you know, it’s unfortunate. and they have some of the most highly trained therapists, but the therapists are kind of hamstrung from upper management, middle management, you know, being told probably from people above them that they can only do so much. in the states we have private equity buying out a lot of hospitals and stuff like that. So there are things are changing in the length of stay that clients get.
Once somebody goes to home health, they usually only get like two to three weeks, once or twice a week, because the goal of home health is usually get them to outpatient, get them to a clinic. and when they go to a clinic, most of the time somebody will reach like a maintenance level where like they’re not really making a ton of progress and the therapists know they’re not gonna be getting reimbursed as well for that. So that gets really challenging and they have to write really good goals to help.
you know, progress things or continue with therapy. So if your therapist is telling you in the outpatient clinic, that’s the one area where you can oftentimes have the best chance of extending therapy. They might be able to, you know, wiggle their way around writing new goals, higher level goals that you can work towards and progressing. And then other times they want to stop therapy for one to two months, three months and then reassess, you know, down the road, which is where a lot of times people seek us out for private therapies on the side. So
It’s unfortunate, but yeah, the insurance game does have a their hand in it a lot of times, telling people when they can discharge or not. So yeah.
BIll Gasiamis (09:50)
How hard is it for a therapist
to know that the stroke survivor patient is not ready to go home, but you have to wind it up for them.
Kory Langwell (09:59)
Yeah.
Whew, it’s really challenging. And usually, I mean, in out most outpatient clinics, you might get somebody two or three days a week if you’re lucky. Usually 30 minute sessions in in the clinic. Sometimes you have one-on-one places for an hour, which are great, or 45 minutes, but you’re it’s a volume game in the clinics because the reimbursements have shrunk in the outpatient world too. So they’re like, We need more volume here.
And it’s unfortunate. It’s not on the therapist. It’s more on the, you know, just the the whole game that they have to do in order to survive, or else they would have to close up shop. But as far as like extending somebody, it it it can be a challenge. It’s it’s really you see it coming as a therapist, you know, and you’re in the outpatient insurance-based game. you’re like, ooh, you know, I I in about two to four weeks I can tell this is gonna be an issue with your insurance or whatnot. And most therapists, if you can get somebody to like 90% better.
You know, that’s pretty darn good, especially after a stroke. there’s a lot of factors that go into that, a lot of variables. But yeah, so it’s it’s tough and getting somebody back to a hundred percent is can be challenging with the insurance game.
BIll Gasiamis (11:07)
Yeah, getting back to a hundred percent is
Kory Langwell (11:12)
It’s hard. It’s like the new one hundred percent or yeah, it’s another topic for yeah.
BIll Gasiamis (11:13)
my gosh. Yeah. The new hundred percent I pref yeah,
that I love that. That’s a great statement actually, because a hundred percent, I mean
Supporting Survivors and CaregiversBIll Gasiamis video 25, image (11:22)
If this podcast has helped you in any way, here’s how you can help it reach more people. Share this episode with a survivor, a carer, or anyone who needs to hear that recovery doesn’t have an expiry date. Leave a review. It makes a massive difference. And if you’d like to support the show financially, you can do that through Patreon at patreon.com/recoveryafterstroke or by becoming a YouTube member. Now it’s back to the show.
BIll Gasiamis (11:50)
I I have that challenge with a lot of stroke survivors who are early on in their recovery. They reach out and they say, you know, how long is this going to take for me to get better? And like, dude, like it might never get better. in that what they want is they want to go back to where they were before the stroke. And there’s n nobody’s going back there. Nobody at all.
Kory Langwell (11:59)
We don’t know. Yeah.
Yeah.
BIll Gasiamis (12:11)
Not a single person. And if there’s damage in the brain and the damage is permanent, which damage is in some instances, then you cannot reverse that damage. You have to accept that damage and then adjust and recover and overcome the challenges that you’ve been left with. And it’s such a difficult thing. But the new 100%, I love that, Kory, because I kind of am there.
And if people ask me how do you feel, which nobody nobody understands to ask how do I feel after my stroke, my left side is completely numb. You know, I get spasticity. It doesn’t look visibly like other people experience spasticity. So I got away with that part of it. I don’t look like I’ve had a stroke, but I have the fatigue, I have the balance issues when I get tired, I have all these challenges that are always there and they’ve been there since two thousand and fourteen. Like it’s not going away.
Kory Langwell (13:07)
Yeah. There’s
There are those silent problems too that like you said, like you’re doing so well in general that a lot of people just can’t see the fatigue or the how tight your arm feels or different things, which is oftentimes really challenging. But if you put it even, you know, towards like an orthopedic injury where somebody has like a shoulder surgery or a knee surgery, typically they also have like that new one hundred percent where it’s you know, it’s never gonna it’s hard to have it feel a hundred percent like it was before. There are certain instances where somebody might make this miraculous recovery. It does happen.
Maybe they’ve had a TIA, a mini stroke, or you know, just made this miraculous recovery. Those those people do exist and it does happen. But what I find in the stroke community that happens a lot is there’s this everyone wants to compare themselves to other people, or they’re they’re wanting to get the answers from things, but there is no crystal ball on these recoveries, you know, for for neuro issues. It’s more like let’s see how it progresses in one month, three months, six months, a year, and then just continue to track because it is a lifelong issue that you have.
have to manage and and continue to, you know, have things come up over over time. So yeah.
BIll Gasiamis (14:14)
Yeah,
I agree with that. So this next question I thought about how I’m gonna ask it a lot. So I’m gonna ask it just the way my gut’s telling me to ask it, which is how much bullshit is that you’ve reached the plateau?
Kory Langwell (14:31)
yeah, that’s a that’s a fun one. I I love the I love the the BS part of that. yeah, it’s tough. I mean, you can see a lot of times what you’ll see is like there’s almost, you know, you think of plateau as like a flat line. And a lot of times what we do see is you’re there’s still room for progress. Like maybe somebody’s feeling like they’re 60% back to their normal self. Well, if we can get you to 65%, would you take that? Like most people would say.
You know, it’s either sixty or sixty five percent. Like, yeah, let’s do that. But a lot of times what I see is
Progress has just slowed down, they get upset, you know, the doctor’s like, whoop, this is as good as it’s gonna get. This is where you’re at. You’ve plateaued and you’ve entered a maintenance stage. And what I often see with that is it’s that’s the time to shift something up, mix something up, do something different. so what we like to do is take into account what kind of audit what somebody’s doing when their exercises, their daily routine and all that, and then shift things in some certain way and reassess in six weeks to see if we can progress that or make any other changes.
So just like with any other training, like if somebody was a bodybuilder going for a competition or a professional athlete, we take that kind of same approach to our stroke recovery. We call athletes in general. Like they’re life athletes, you know. So we wanna help people feel as independent and as strong as they can. So yeah.
BIll Gasiamis (15:50)
That’s a great mindset shift, right? So if you consider yourself somebody who’s injured, somebody who’s never gonna be the same, all that kind of stuff, well, it might be accurate, but it may not be helpful in the way you approach your recovery. But an athlete, that’s very cool. Now I know some people say what an athlete runs on a track and field you know, facility. An athlete does this, an athlete does that. Well,
Maybe, maybe they don’t, you know, maybe you can be your own version of an athlete that allows you to think about that constant and never ending pursuit of getting better and improving. And whether you’re getting better and improving your physical side or your mental attitude or your emotional side or your or your nutrition, you know.
Community and Support in RecoveryAthletes have all these things that they always constantly forever focus on and their gains come from, you know, that really last part, which is almost unattainable, but it’s about going for it. It’s about going for the last one percent. And then reflecting back, like you said, maybe twelve months later and going, Look how far I’ve come, rather than look what I can’t do or look what I haven’t achieved yet. It’s like, look what I have been able to achieve. That’s
Kory Langwell (17:03)
Yeah.
Yeah.
Yeah.
And that’s where and that’s where tracking comes into it. Are there, you know, your what what are your
BIll Gasiamis (17:15)
Such a different mindset.
Kory Langwell (17:21)
you know, your KPIs, your key performance indicators that you’re looking into as far as, hey, I was only lifting one pound with my arm and now I’m do lifting three pounds. Like that’s huge improvement in a, you know, what however long it’s been. So those whatever you’re tracking, it helps to you know, it could be your diet. Am I making good choices eighty percent of the time? Am I so making sure in like all of your life assets assets and that or facets of life, that’s what we try to do as well. And like you said, mindset, movement, muscle, all that.
all those things together. we we you know, tie all those things into our our program. And I think everyone needs to do that as far as, you know, their strengthen those the mental muscle, the physical muscle, you know, they’re just as important. And having that support, whether it’s with a coach or whether it’s with family, friends, outsiders, you know, other stroke survivors, it’s really important. So
BIll Gasiamis (18:14)
Yeah, community is the I think biggest thing for me. because then with the right community, the one that I’ve created for myself, at least I get to talk about the things that bug me about what happened to me with people who one hundred percent understand it. And then that way, even if we’re different in our attitude in the way we go about things, at least we understand.
Kory Langwell (18:35)
Yeah.
BIll Gasiamis (18:45)
And you’re totally being heard. Do know what mean? Like it takes one minute to listen to the story of a stroke survivor and to fully understand where they’re coming from because they’ve been through a a similar, a very similar experience to to myself.
Kory Langwell (18:52)
Yeah.
Yeah, yeah, absolutely. for sure.
It’s so true. I mean, as a therapist, I I never really I mean, I knew there was a mental toll to it, but having worked with people for, you know, they come on and they’re with us for several years, you really see the mental aspects, like the ups and downs that occur with that. And it’s so huge to you know, important to to focus on that as well. So and not lose sight of it. So those silent symptoms of the stroke, you know, like we were talking about as far as the the emotional aspect or other things of that. So yeah.
BIll Gasiamis (19:26)
Yeah.
Yeah, one of the biggest complaints that I get from stroke survivors, not about their spouse, but about people about people who haven’t had a stroke, right? So often it’s the spouse that gets the raw end of the stick. But it’s that they just don’t understand me. And it’s so true, right? There’s no way that that person can understand you unless they’ve had a stroke, and we do not want that for them. That’s better that they don’t understand you and that you have to learn how to explain yourself in a way
Kory Langwell (19:53)
Yeah.
Yeah.
BIll Gasiamis (20:04)
that gets the message across even if they don’t get it. Like it’s okay because they’re never gonna get it. We don’t want them to really ever get it. What we wanna do is accept that they can’t understand something that they have never experienced, which we don’t want them to experience.
Kory Langwell (20:20)
Yeah, that’s so true. I mean, the it a lot of times it comes from a good place. They’re like, just get up and move. Why are you so tired? or you know, things of that nature. And it y you’re right. They just they don’t understand it. It’s it’s tough. There really should be more caregiver support and education.
I’ve tr I’ve strived to do that on my page or on my different resources that I’ve included on my bio. But yeah, it’s it’s in sh it’s a challenge for people to to see the whole picture and the recoveries process that’s going on with that. So yeah.
BIll Gasiamis (20:51)
Yeah.
How common is foot drop?
Kory Langwell (20:56)
yeah. Strokes you you do see it a fair amount. it’s what I see a lot of times with that.
You know, when in the hospital, a lot of times I don’t like to immediately put somebody in like an AFO. Everyone knows ankle foot orthosis and stuff like that. but it’s something that I like to see how the body reacts initially to to the the weaker ankle or whatnot, and how is somebody compensating? So you’ll see somebody, you know, try to march their leg up to clear their foot through the gate cycle, or they’ll kick their their leg out to the side so that they don’t drag their foot or their toe. so I like to see.
See
what’s going on for the first week or so before we start trying to, you know, put a bunch of equipment on somebody. But honestly, it it’s it’s pretty common. it just depends on the nature or severity of the stroke. Most muscle recovery starts proximally, meaning like at the hip and then works its way down, or in the shoulder and then works its way down to the hand. so the ankle and the hand are usually the last to recover.
but yeah, so it’s obviously it’s very noticeable on somebody’s walk gate or whatnot if they have it, or you know, as you just see their AFO and you’re like, that guy’s got foot drop, most likely, or whatnot. So yeah, just trying to figure out where’s is there are there other weak links up the chain and the knee, the quad, you know, your your your glutes, your hip, what other areas could use some help to help you get that leg through and help you be more independent? So
BIll Gasiamis (22:28)
Mm.
Kory Langwell (22:29)
really treating the whole ankle or the whole walking pattern, not just the ankle or the foot. Cause we a lot of times we get laser focused into one area after a stroke like my hand or my foot, but we gotta look at the whole body. So yeah.
BIll Gasiamis (22:41)
So there is a conversation that happens again in the community about whether I should be wearing AFO or I shouldn’t. And you often hear people saying, I got rid of my AFO. it was causing me to walk badly or incorrectly and it was decreasing the muscle activity in the correct way.
Kory Langwell (22:51)
Yeah.
Yeah.
BIll Gasiamis (23:08)
And then you hear the exact opposite. Well, you know, you should definitely have an AFO so you don’t trip over, you don’t do this, you don’t do that. Like, how do you determine that whole should I or should I not have an AFO? And do some people definitely need an AFO? And then also are there some people who can transition out of an AFO?
Kory Langwell (23:20)
Yeah.
Yeah, it it really is with a lot of neurotype issues, it it really does depend. You’ll hear the answer, it depends a lot of times in the neuro world, neurological issue or you know, in the stroke world. But on a case by case basis, it’s really how does somebody look? How independent are they with and without it? How much strength do they have in their the muscles on your shin and on the outside of your leg that help lift your ankle up? is it something that maybe you just wear it when you’re outside? And then when you’re inside the house, you’re getting that input.
with your shoes off. I I really liked the shoes off, you know, kind of full input on how your foot’s moving. You can really see it visually, get some feedback there on what’s going on. So it it and it can change over time. Maybe somebody ditches it after a while or maybe they w they know like, hey, I’m gonna be going on this longer walk. I’m gonna use my AFO so I don’t get as tired because it can be more taxing and energy draining to have to, you know, lift your leg up more, kick it out to the side or whatnot. So we’re really trying to figure out what’s the best
quality over quantity for for most folks so that they’re not overdoing it, but they still are getting you know, the appropriate amount of feedback and and to help them live their life, be as independent as possible. So I’m not against or for it. It’s just wanna it depends on the person. So yeah.
BIll Gasiamis (24:45)
Sounds like it’s a tool to be probably continuously assessed and determine its usability and then also for some people determine whether or not it’s short term, long term thing. And then also keep looking at it. What I seem to also see is people get told something, they do it, and then they do it for a long, long time and nobody kind of ever intervenes a year later to say, where are we at with that?
Kory Langwell (24:51)
Yeah.
Yeah.
It you know, it it’s it’s good to take it off every once in a while if you’re especially if you’re in safe environment and just reassess things, you know, on your own or with a therapist or whatnot. That again gives new input and sensory, you know, feedback to your brain of like, what’s going on here? And that that’s a chance for that neuroplasticity to occur, which you know, is a is a is a big buzzword in the in the neuro world. But yeah, so we’re just trying to create those environments and those chances for, you know, things to improve and and reassess.
assess things as as you’re going along. So yeah.
BIll Gasiamis (25:49)
Can you explain to me briefly if you can, like what happens with foot drop, why does it occur? and why don’t I hear about the opposite of foot drop, which is the foot changing and going in the other direction?
The Impact of Electrical Stimulation in RehabilitationKory Langwell (26:06)
Yeah. so your your muscles on your shin, you know, like those those are the ones that people get shin splints on from working out or whatnot, your anterior tibialis muscle, those are a prime mover of lifting your foot up.
And oftentimes the feedback and the timing, the coordination down to those muscles is just weakened or impaired. So you’ll see a lot of issues with that. You also have muscles on the outside of your shin. They’re called everters. So they evert or turn the foot out. So the combination of those everters and then the dorsiflexors that lift the foot up, those muscles are the two prime movers of that motion. They’re oftentimes affected with different strokes. And then so a lot of times what we end up using is like things.
like electrical stimulation. I have a really good video on my YouTube, about eight to ten minutes long on how to set that up. but you can
You c I I see a lot of good impact with the with the E stem, whether somebody’s laying down or sitting, or then there’s other things like the bioness for the leg and the arm, but the one for the leg to help with the timing and coordination, all that, all those things that go into it. So it’s just not just weakness, it’s that timing, coordination, balance, all those things combined. So yeah.
BIll Gasiamis (27:19)
Got it, got it. So you’ve seen some positive, helpful, supportive kind of outcomes from those electrical stimulators at like Bioness and other other types.
Kory Langwell (27:33)
Yeah, yeah. I’ve even like I’ve I have one that I use with clients that I I bought on Amazon for like forty bucks because the the range is anywhere from thirty to forty bucks up to like hundreds of dollars. Or, you know, the Bioness is you I think they can get that covered with insurance, at least a partial bit of it, but those are a lot more expensive. like thousands of dollars from to my knowledge. But I what I’ve seen is
I don’t see a huge difference between some of those cheaper versions and then the larger ones. some of the bigger ones, like the Bioness, you do get a little more feedback or like that since like it will come on at a certain point of your gait cycle. So it’s like, lifts the toes at a certain point.
helps you go through whereas versus you know a standard ESTEM unit, you’re usually it’s on for like 10 seconds, it’s off for 10 to 30 seconds depending on the settings. So but as an exercise tool in the general, in general, if somebody’s having issues and they have good sensation to that area. So you don’t want to put it on somebody that like can’t feel their leg or whatever. But it can be very beneficial at like getting that sensory and then the motor or muscle input back to that area. So not saying it’s going to get to that 100%.
But it’s gonna help you. it oftentimes does help people, even, you know, if it’s ten to fifty percent better, great. You know, that’s a huge difference with somebody getting around. So yeah.
BIll Gasiamis (28:53)
Okay. So worth people considering the possibility of getting a forty dollar version just to sort of try it out and see whether or not it might be supportive. And then if it is and they want to get something more expensive, then go f go from there. your homework after this conversation is going to be to send us the links to every single thing you mentioned. So we can put it in the show notes and everyone can have a look at it. Now, with walking,
Kory Langwell (29:12)
Yeah.
Yeah, absolutely.
Walking: Quality Over Quantity in RecoveryBIll Gasiamis (29:23)
I’m of the I’m I I’m I’m in the camp of do more in the from the perspective of if you’re only walking for a minute, try and get to two. If you’re walking for two, try and get to four and so on. And then if you can get to thirty minutes or an hour at some stage, doesn’t matter when, then that’s even better. but when we started that conversation about
Kory Langwell (29:39)
Yeah.
BIll Gasiamis (29:53)
you joining me on the podcast and we share ideas about what we’re gonna talk about. You came back with me with regards to something about walking that people miss that could mean that walking further, longer, and more could actually be causing a problem. Tell me about about walking and the things that we can run into that make well, not things worse necessarily, but
Not from an exercise perspective, but from a rehabilitation’s pers perspective.
Understanding the Stages of RecoveryKory Langwell (30:20)
Yeah.
Yeah, I think it there’s a little differentiator in there. It’s like where what stage are you at in the recovery? So if somebody’s in that really acute stage, it’s you know, pretty fresh on the stroke, maybe it’s like somebody less than a month post stroke. We don’t want to get to the point where they’re just like
you know, nearly exhausting themselves every single walk, you know, so there’s a time and a place for that. So you know, if somebody can only walk like five steps, we don’t want to go try to, you know, you’re gonna walk 25. And like you can do that every now and then, but don’t do it on like back to back days. Don’t do it on like back to back therapy sessions or whatever. So there’s a there’s a combination of like early on we want to make sure things are good quality. And then as we get moving forward, we want to progress in a fashion that’s comfortable and not over
Taxing the neurological system, because a lot of times, as you know, fatigue plays a huge role in that. And how is that affecting you? Are you like you went for a super long walk, but now you’re down for the count for two days or you know, at least a day. So you know, walking a hundred feet can feel like a marathon early on. So it’s just making sure that you’re getting the right feedback, that accountability, support, where you’re it’s quality.
in not just overdoing it. So I find that a lot where people want to do a ton of reps or like they’re doing an exercise, like they’re trying to lift their arm up, but they’re doing this the whole time, you know, and I’m like, you’re just you’re not lifting your arm, they’re just like tiring out their trap muscle as opposed to like some of the the delt or bicep or different areas. So like you’re just gonna get really bulky but traps up here, but you’re not really necessarily helping yourself versus if you did good quality and like keep that shoulder down. I’m just using that as an example. But for walking, you know, same thing. Like are you using a mirror for feedback?
To see, like, I’m actually, I’m every step, I’m kind of falling off to the side. Why is that? I’d rather like have somebody walk 50 feet really well than like 150 feet terribly, you know. So it’s and that that again goes into more of the acute stage. Now, if somebody’s sub-acute, more of a chronic, it’s been 10, 15 years, go for it. Like, if you want, if you feel good about it, you’re not overtact taxing yourself, getting overtired or anything, you know, do what you can. Walking is one of the best exercises for you.
I also like I I’m a big fan of walking backwards. So in a safe area like by the kitchen sink or a hallway or something, it just challenges your mind and it’s a really good balance exercise for somebody post stroke or with any neurological issue because it just told you you see somebody try it the first time, they’re like, What do you want me to do? Walk backwards. And then there’s tons of ways you can adjust the the intensity on that as well. So yeah.
BIll Gasiamis (33:01)
So also I remember being in outpatient rehab and feeling like I actually wasn’t able to walk well. And then the therapist saying, Well, why don’t we just record it and have a look at how you’re walking? And it was also about running because I I wanted to run, but I didn’t want to run marathons. I just wanted to be able to run across the road if a car’s coming or something. And I said, Well, I’m a bit concerned about how that
Kory Langwell (33:15)
Yeah.
BIll Gasiamis (33:30)
goes ’cause I don’t want to injure myself running, et cetera. And well he said, Well, why don’t we do a run, I’ll record you and I’ll then we’ll break it down and I’ll show you what you’re doing or what you’re not doing. And it turns out that my running style was fine. What wasn’t fine was the feedback that I was getting because it was completely different to the previous thirty seven years of my life. And I and because it felt different and my brain registered it differently, it
It was scary. Like it was like, well, this doesn’t I’m gonna probably injure myself is how I I thought it. But when I saw the video, it was completely different. And sure, there was some instructions still about how to do it correctly, what I might be able to improve, especially with my left leg, but the but the overall picture was more positive than I t made it out to be. And that’s the challenging part. Sometimes we think we’re less capable than we are.
Kory Langwell (34:06)
Yeah, yeah.
Yeah, and that’s why the visual feedback is so important, whether you record it with your cell phone or you know, just getting the real time feedback on with a mirror or something like that. It’s you know, you see that used in therapy a lot because you may not notice that you’re doing something and just having somebody tell you that isn’t gonna help as much as if you’re somebody’s telling you plus they’re showing you what you’re doing. Yeah, that that can be a huge, you know, help of like, you know, that
I can feel that now. It’s good biofeedback. I can, you know, move on from there. So yeah.
BIll Gasiamis (35:01)
Yeah. And so it sounds like there’s two parts to that conversation. Is sometimes we think we’re doing it better than we are, and sometimes we think we’re doing it worse than we are. So it’s really important to have somebody assess you or at least give you feedback and give you the opportunity to check your assumptions about yourself and then also to check via perhaps a recording to check, you know, how you are actually doing things. So you can see it from
Kory Langwell (35:10)
Yeah.
BIll Gasiamis (35:31)
their perspective and then you can adjust as you’re going forward.
Kory Langwell (35:35)
Yeah, absolutely.
BIll Gasiamis (35:37)
So what about falling? That’s a huge issue after stroke. I fell quite a few times after surgery. The first time I fell, Kory, was about I don’t know, less than twenty-four hours after I woke up after brain surgery. And the nurse said to me, Have you been to the bathroom to movie bowels? And I was like, No, I haven’t been anywhere. And she said, Well, great, get up, I’ll let I’ll help you.
get there and now she was a lot smaller than me and a lot thinner framed and she said just put your arm around me and I’ll help you get to the bathroom. Okay, cool. I did that and when I stepped out onto my left leg, from the left side of the bed, as soon as I put weight on it, without her having any idea, I completely fell straight to the ground, in the ward, screaming
Kory Langwell (36:32)
no. Yeah. Yeah.
BIll Gasiamis (36:36)
I’ve got a fresh h scar and patch on my head from brain surgery literally twenty-four hours ago. so it became quite a concern after that because it was the first time I realized that my left side doesn’t work. And it was the first time I realized that th falling after a stroke with a cr a fresh craniotomy and all that kind of stuff is also very dangerous, right? So when I came home
Navigating the Challenges of Falling Post-StrokeKory Langwell (36:37)
Yeah.
BIll Gasiamis (37:04)
I was pretty independent and I felt really good about the fact that I was able to walk on my own. but when I got up from the couch one time and many other times when I’ve fallen, when I got up from the couch on time, I forgot to connect my new leg to my my standing up, my getting up from the couch. I had just eaten a sandwich. It was in a plate. I was the one that went and made the sandwich, sat down and started eating it.
And then as soon as I finished it, I went to get up to take the plate to the sink. And my left leg wasn’t aware that it was on the ground. And I fell immediately. And I dropped the plate, I broke the plate, I smashed my ribs on the arm of the couch. I thankfully didn’t injure myself terribly, but it was a close call. And I always after that, I always made a point and still do in the morning when I wake up to get out of bed.
Kory Langwell (37:41)
Yeah.
Wow. Yeah.
BIll Gasiamis (38:01)
make sure my foot is on the ground before I stand up so that I don’t lose balance and fall. So that’s my that’s my story about falling, but also it’s very common in stroke survivors. I hear that a lot. Tell me about why falls happen after stroke.
Kory Langwell (38:05)
Yeah.
Yeah.
Yeah. You know, first off it
Kinda hurts my therapist heart to hear that what you know, the nurse and you will fall in there. That’s where I’m like, he needed a PT evaluation to see how strong his legs are, where his, you know, sensation is and all that. Usually when we get somebody up, we want to make sure they’re safe at the edge of the bed. And then maybe we’re transferring just to like a a bedside commode in the the first time. And then you’re you you check that box then. We start moving towards walking once we make sure it’s safe. But sometimes the nurses get a little gung ho with things and get a little excited. we try to stay in our lane and, you know, just do the
That PTS needed. but as far as like, you know, making sure somebody’s safe, it’s creating the right environment for them that, you know, like I mentioned, making sure they’re strong enough with their legs to, you know, and the most people will know as they started physical therapy what level they’re at, how much help they need, all those things. So, and then not over challenging somebody where we’re doing like
very advanced balance exercises or doing very, you know, doing three tasks at once or like you carrying that dish, you know, and that’s a more your brain is like thinking, we’re good and I’m just gonna carry this dish and I’m gonna go turn off the TV while I’m getting up or whatever. And your brain’s like, nope, no you’re not, and you just fall over. So it’s like creating, you know, those too many environmental stimuli probably and then just where it kind of I don’t tricked your brain into to not focusing on where your your leg is at.
We call that the proprioception or just realizing where your joints are, your limbs are in space. And sometimes that can be very affected after strokes. So we just wanna, you know, see how that looks, see how you’re moving, and and you know, go from there. So yeah.
BIll Gasiamis (40:08)
You probably describe that better than anybody, actually. Proprioception is my is a challenge that I have, but nobody ever connected that to what you just said, too many things happening at once. And it was exactly that. I had a plate, I just finished a meal, and my goal was to get the plate back to the sink safely without dropping it. And it was my my attention was
Kory Langwell (40:33)
Yeah.
BIll Gasiamis (40:36)
diverted away from making sure my leg was in the right position for me to stand up and was the muscles were activated, which I had been doing every day before that, right? I’d been making sure. But right now I had a plate in my hand and it was get up without dropping the plate.
Kory Langwell (40:37)
Yeah,
Yeah.
Yeah, yeah. Yep.
Yeah.
Pun pun intended, step by step, right? Just looking into like, okay, my feet are on the ground. I am able to push myself up to stand. Now we’re gonna take a step slowly, you know, go through that. So yeah, it’s it’s making sure everything looks appropriate and is, you know, safe for that specific client. So yeah.
BIll Gasiamis (41:12)
In
my case I think now reflecting back on it, it would have been better if I’d gotten up and then reached over to pick up the plate and then moved to towards the the kitchen sink. And I think I was at home alone that day. And again, I screamed because before I knew it all was on the ground.
Kory Langwell (41:27)
Yeah. It happens. Yeah. Yeah.
Setting Realistic Goals for RecoveryBIll Gasiamis (41:35)
It’s a very interesting thing to reflect back on it. under these sort of conditions where you and I are talking about things that seem they’re very glossed over. They’re not often spoken about in detail and people miss the the point. And sometimes people think I can’t do something properly, therefore I’m not gonna do it at all. But with regards to walking, what’s the best thing to do?
about a walk that you haven’t been able to get back to the normal sort of style and and feel uncomfortable about doing. Some people will go, well, I’m opting out, I’m not gonna do that anymore because I can’t do it properly. It’s too difficult or it’s uncomfortable.
Kory Langwell (42:21)
Yeah.
Yeah. I think it’s making goals that are you know, you hear about those specific, measurable, attainable, realistic time frame, the smart goals. So making sure that applies here. So
It you gotta be able to walk before you can run, like with anything in life. So and that’s just you know, symbolic quote or whatnot, but you just wanna be able to do stuff that you can be working towards, but it’s also not so far out there that it’s like really hard. And then I see a lot of times people move those goalposts on themselves too much where they’re like, I got here. Now it’s like I wanna, you know, it’s you got to celebrate those small wins and then go from there as like far as you know, moving forward.
So we had a client recently there.
Doctor told them they were never gonna walk again. And literally, like they our therapist showed up, the patient was in tears, and then they walked 70 feet with our therapist. And it was all because it was a doctor that didn’t know them. They did like some reflex testing and said, you’re hyporeflexic, you’re never gonna walk again. And then literally that same day walked 70 feet. I was like, I hope you go back and tell them, you know, that that you missed that. So it’s
BIll Gasiamis (43:15)
Mm.
Kory Langwell (43:36)
really just making sure that you’re creating these sustainable goals that
You know, and not letting people like that doctor that may not know you, a family member, you know, get in your ear and and cause these things that are detrimental to your your progress and take it in the right way. So yeah.
BIll Gasiamis (43:55)
You can’t actually answer this and I’m putting you on the spot, but I’m gonna ask it anyway. Like I assume that doctors, therapists, everybody is about rehabilitating, supporting, helping people and all that kind of stuff. I I not assume they definitely are, right? But what do you think is behind a questi a statement like you’re never going to X again? Like I hear that so, so much and I thought that by the time we get
to twenty twenty six that that won’t be a thing that I hear about so often. Like, but I I don’t think it comes from being nasty or trying to give people setbacks or whatever. But do you have a sense of what that might be? Is it training? Is it a lack of training?
Kory Langwell (44:30)
Yeah.
The Role of Medical Professionals in RehabilitationI think yeah, you see a lot of like GPs, general practitioners, they don’t really have great training in like neurological rehab. So if it’s a PM and R doc, like a physical medicine and rehab doc, I find usually they’re a little more
open-minded or or willing to s you know see the the progress or or whatnot over time. If you go into a doctor’s appointment, you show up in a wheelchair and it’s been, you know, six months, the doctor’s probably your general practitioner is probably gonna be like, well, this is what it is. It’s been six months. And I think some of that is from old research that came out that you can’t make progress after six months to a year, which was more because they just stopped therapy, they stopped doing things and you know, didn’t see progress because of that. So it’s, you know, yeah, if you don’t do anything and you just sit on your butt,
all day you’re you’re not gonna see progress or you’re not gonna change. So but yeah as far as from a doctor’s standpoint it it can also be case by case with the doctors as far as their own experience and whatnot. And I don’t think necessarily they ever mean like harm or anything.
Maybe they are trying to be realistic with clients as far as like this is what I’m seeing. I don’t think you know, the chances of this are slim, but they they it’s probably just a way of wording it better versus saying you’re never gonna do something again because there’s so many different things that are coming out, like research wise, treatment, you know, like things change drastically now. so it’s I I just like to to leave a at least leave the door open for people to see that improvement. So yeah.
BIll Gasiamis (46:16)
And walking doesn’t have to be the way you walked before. It could be a different version. It looked differently, feel differently, but it can still be walking. also I think it’s from ignorance, right? And again, ignorance, I don’t throw that out as a way to attack somebody, but it’s like literally that person hasn’t been in the space where Kory might work. They haven’t been in a space where they have seen people overcome some difficult challenges.
Kory Langwell (46:23)
Yeah.
BIll Gasiamis (46:41)
So they just make a assumption based on old thinking or something they heard in the past or old research that just stuck. And they’re just telling you, your job, your responsibility is to find new research to overcome that challenge because that research, it’s so bad if there was some and if they disseminated it to all the population in the medical community, and that has been continued to be passed on. I mean, that is so crazy that it persists and now.
I just want to encourage people, do not believe anyone that tells you, A, you’ve hit hit a plateau, B, that you’re never going to do something again. And even though that might be true, just don’t believe it because there might be a technology around the corner that happens to solve that problem for you. You just don’t know about it yet. And always work towards the solution rather than focusing on the problem is kind of how I see it. And that’s generally what you guys tend to do. You guys tend to help people focus on.
Kory Langwell (47:27)
Yeah.
Yeah.
BIll Gasiamis (47:41)
How do we overcome a problem? What’s the solution to this?
Kory Langwell (47:46)
Yeah, I think using it as motivation is is huge. So like you can take anything somebody tells you, you can take it one of two ways. And if you let it get you down, that’s up to you. Or if you’re like, Okay, I take that feedback, I appreciate it, but I’m not gonna accept it and use it as motivation to to strive to do better and move better. Like that that’s up to you. and who somebody is in their own, you know, life. So I always tell people it’s like, Well, what do you want to work on? You know, if some people are like, I don’t wanna do this anymore, I don’t wanna exercise, it’s like that’s up to you. So
And other people they’re like, I want to push as hard as I can, I want to do what I can do. And so it’s really, you know, up to the what that somebody wants to do with their life and their progress, their recovery.
BIll Gasiamis (48:28)
Kory, it’s been an awesome conversation. Thanks so much for joining me on the podcast and saying yes when I reached out to have you on here and share your wisdom. Can you tell me where can people go and find th information about you?
Kory Langwell (48:44)
Yeah, so our our main website is unlimitedpotential.biz and you we have a health coaching page on there where people could message me on there if they want. I’ve had some people reach out. I’m pretty active in TikTok on on like DMs if people in my private messages of people reach out there as well. Dr. Kory, K-O-R-Y, stroke recovery PT.
and then I’ll we’ll try to get you the handle there, the links on all that stuff. Those are probably the two best ways to reach me. I will say it’s really hard to give specific advice over a text or an email or whatnot. So I and there obviously I understand like there’s a lot of people that have financial issues or they they want the free advice or whatnot, but it’s just it’s really hard as a therapist to give a lot of that. I try my best and I can’t reach everyone doing that, but we really are able to to make a difference when we do work with people one on one. So yeah.
BIll Gasiamis (49:36)
Yeah. There might be programs that people can look into that you are offering either in house or somewhere else. That’s probably why I would encourage people to reach out to get an answer about your specific issue. Dr. Corey’s not going to do that. just like many people can’t answer a specific question about a problem that you may or may not have un unless they have information about your data or you know, they’re your physician or they have your scans and all that kind of stuff, that’s not gonna happen. But that’s okay.
people can still follow you because your tips on TikTok are really cool. They’re on the mark and that’s where I love listening and learning from you.
Kory Langwell (50:16)
Thank you, I appreciate it. I’ll keep coming.
BIll Gasiamis (50:19)
Yeah, definitely
keep them coming, man. it’s been a great thing, this social media thing because it brings information to people that otherwise wouldn’t be able to access it. Some people might be stuck with the doctor who said, You’re never gonna do this again. And that would be the most terrible place to be stuck and have nobody else to kind of throw a spanner in the works in that type of thinking and then suggest something more, more hopeful, more positive.
Kory Langwell (50:34)
Yeah. Yep.
Yeah, absolutely. And it’s always good. I mean, I learn from stroke survivors all the time on what they’re going through. And it’s just, you know, it’s everyone working together around the world now. So I’m in I’m in California and we have, you know, like we’re talking you’re in Australia. I’ve talked to people all over the world now and it’s it’s just been great to to open those doors to a lot of people and you know, at least have conversations with them. So
BIll Gasiamis (51:09)
Doctor Kory, thank you so much for joining me on the podcast.
Kory Langwell (51:11)
Yeah. Thanks. Thanks for having me.
BIll Gasiamis video 25, image (51:13)
Well, that was Dr. Corey Langwell, Doctor of Physical Therapy and founder of Unlimited Potential Physical Therapy. All of Corey’s links, his TikTok, YouTube, Facebook, his eSteam recommendations, and how to reach him directly are in the show notes. If you want to work with him, head to unlimitedpotential.biz. If today’s conversation got you thinking about your own recovery, I’d love to hear from you at unlimitedpotential.
If you want to go deeper on the mindset and tools that shaped my own recovery, my book, The Unexpected Way That a Stroke Became, the Best Thing That Happened, is available at recoveryafterstroke.com/book.
Now a very special thank you to the people who made this show possible. To everyone who has donated, shared an episode, left a review, sent in feedback, commented, or bought my book, thank you. You have no idea how much it genuinely means. This is what keeps the show alive. and a warm welcome to our newest YouTube members. Jennifer, Brett, Damien, Keith, Trisha, Shanna, Hala.
At Desselvi at Antomic Clavers and Barbecue Queen 7083. Thank you for joining and for your support. And a heartfelt thank you to our newest Patreon supporters, Kathy, Jennifer, and Laurie for contributing financially to keep this podcast going. It means the world to me. Thank you for listening. I’ll see you in the next episode.
The post She Was Told She’d Never Walk Again – Her PT Proved Them Wrong | Dr. Kory Langwell appeared first on Recovery After Stroke.
Falls Prevention After Stroke: What the Latest Research Reveals About Staying Safe and MobileFor many stroke survivors, the fear of falling is a constant companion. It’s there when you get up from the couch, when you navigate the kitchen, when you try to walk further than you did yesterday. That fear is rational, falls after a stroke are common, and their consequences can be serious. But according to Associate Professor Kate Scrivener, a stroke rehabilitation researcher at Macquarie University, that fear doesn’t have to define your recovery.
In Episode 409 of the Recovery After Stroke podcast, Kate returns to the show where she first appeared in Episode 257 to discuss her HiWalk walking program and share the results of two major research projects: the published Phase II results of HiWalk, and a new systematic review focused specifically on exercise-based falls prevention after stroke.
Who Is Kate Scrivener?Associate Professor Kate Scrivener leads stroke rehabilitation research at Macquarie University in Sydney, Australia. Her work sits at the intersection of real-world clinical practice and rigorous research. She doesn’t just study stroke recovery, she designs and tests the programs that can change it. Kate first appeared on this podcast to talk about HiWalk, a high-dose walking intervention designed to push the limits of what long-term stroke survivors can achieve. Now, with the results published, she’s back to talk about what the data actually showed and what it means for survivors who want to reduce their fall risk.
The HiWalk Results: What Happened When 47 Survivors Walked HardHiWalk was built on a straightforward but ambitious premise: what happens if stroke survivors, who have been living with their disability for years, are given a truly high-dose walking program? Not a gentle weekly session, but 43 hours of structured walking across just three weeks.
The Phase II randomized trial enrolled 47 participants and produced results worth paying attention to.
Attendance was 91%. Retention was 98%. For a physically demanding trial involving chronic stroke survivors, those numbers are remarkable, and they tell their own story about what survivors are capable of when given a real opportunity.
For participants who were not already in active rehabilitation at the time of the trial, walking speed improved by 0.24 metres per second, a clinically significant gain. Self-efficacy, a measure of how confident participants felt in their own ability to walk and function, also improved significantly.
The overall group walking speed trend was positive but did not reach statistical significance across the full cohort, partly because HiWalk was a Phase II feasibility trial, designed to test whether the program could be delivered safely and whether participants would complete it. It was not powered to detect large group-wide effects. What it demonstrated is that this kind of high-dose program is feasible, achievable, and produces real gains for the right participants.
Why Falls Prevention After Stroke Is Harder Than It SoundsFalls after stroke are not simply a balance problem. They involve fatigue, reduced sensation, spasticity, cognitive changes, and the interaction between all of those things in the unpredictable terrain of daily life. Most stroke survivors are told to be careful. Very few are given a structured, evidence-based program designed specifically to reduce their risk.
Kate’s systematic review, published in Clinical Rehabilitation in 2026, searched the global literature for exercise-based trials targeting falls prevention in community-dwelling stroke survivors. Only three trials worldwide met the inclusion criteria.
That number alone says something significant. Falls after stroke are widely acknowledged as a major problem. The research base for solving it is thin.
Of the three trials identified, exercise trended toward reducing the rate of falls, but the effect on the total number of people who fell was less clear. The standout result came from the FAST trial, which reduced fall rates by 33%. All three qualifying trials were conducted in Australia, raising important questions about whether these findings can be replicated in different healthcare systems with different levels of access to physiotherapy and structured exercise.
What This Means for Stroke Survivors Right NowKate’s research points to two things survivors and their families can act on.
First, walking intensity matters. The HiWalk results suggest that long-term survivors who have plateaued in conventional rehabilitation may have more capacity than they or their clinicians assume. High-dose, structured walking appears to produce gains that lower-intensity programs don’t reach. If you’re a survivor who has been told to keep active but hasn’t been given a specific, progressive program, that’s worth a conversation with your physiotherapist.
Second, exercise for falls prevention works, but it needs to be the right kind, delivered consistently. Gentle movement is valuable. But the evidence base Kate’s review maps out points toward structured, progressive exercise as the mechanism that shifts fall rates meaningfully. The FAST trial’s 33% reduction didn’t come from telling people to be more careful. It came from changing what they were physically capable of doing.
Bill’s book, The Unexpected Way That A Stroke Became The Best Thing That Happened, explores the tools and mindset shifts that underpin a recovery built on action rather than waiting. You can find it at recoveryafterstroke.com/book.
The Gap Between Research and PracticeOne of the most important threads in this conversation is the distance between what the research supports and what most survivors actually receive. Kate’s systematic review found only three qualifying trials globally. HiWalk’s feasibility results are published, but the next step, a large-scale Phase III trial, requires funding, time, and institutional will.
For survivors, that gap can feel frustrating. The science is pointing in a clear direction. The programs aren’t yet widely available. Kate’s work is part of closing that distance.
Listen to the Full ConversationEpisode 409 with Associate Professor Kate Scrivener is available on all major podcast platforms, search Recovery After Stroke and on the Recovery After Stroke YouTube channel.
If this show has helped you on your recovery journey, you can support it financially at patreon.com/recoveryafterstroke.
This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
Walking More, Falling Less – A Researcher’s Mission to Stop Stroke Survivors Hitting the Ground (Interview)Researcher Kate Scrivener on why falls after stroke aren’t inevitable — and what high-dose walking programs can change.
Highlights:
00:00 Introduction – Falls Prevention After Stroke
07:04 Effectiveness of Rehabilitation for Non-Therapy Patients
13:01 Falls Risk and Prevention Strategies
20:53 Tailoring Exercise Programs for Individual Needs
26:48 Barriers to Implementing New Treatments
35:23 The Importance of Patient-Centered Research
41:32 Future Directions in Stroke Rehabilitation
Transcript:
Introduction – Falls Prevention After StrokeBIll Gasiamis (00:00)
Well, hello everyone. Welcome to Recovery After Stroke. I’m Bill Garciamas. Today’s guest is someone who has been on the show before, and I’m glad she’s back because the last time we spoke, she was in the middle of a research program that I thought had real potential to change things for long-term stroke survivors. Now the results are in. Associate Professor Kate Scrivener is a stroke rehabilitation researcher at Macquarie University in Sydney, Australia.
Her work focuses on what happens to survivors after formal rehabilitation ends, what’s possible, what the research actually supports, and what the gap looks like between current clinical practice and what survivors could be doing.
In episode 257, Kate joined me to talk about High Walk, a high-dose walking program she designed for people living with chronic stroke. In this episode, she returns to share the published phase two results of that trial and to discuss her new systemic review on exercise-based false prevention after stroke. That review searched the entire global literature and found just three qualifying trials.
That number tells you a lot about where the research is and why conversations like this matter. We cover the high walk data, what 43 hours of walking over three weeks produced in 47 participants, what the fast trial found about reducing fall rates, and what survivors can actually do right now based on the evidence. If you’ve found this podcast useful on your own recovery journey, I’d love for you to pick up a copy of my book.
The unexpected way that a stroke became the best thing that happened. You can do that at recoveryafterstroke dot com slash book. It’s the story of my stroke and ten tools that shaped my recovery. And if this show has helped you, you can support it financially at patreon dot com slash recovery after stroke.
Every contribution keeps the podcast going.
BIll Gasiamis (02:00)
Associate Professor Kate Scrivener. Welcome to the podcast.
Kate (02:04)
Nice to be back, Bill.
BIll Gasiamis (02:07)
Nice to have you back. Last time you were on, we spoke about a project that you were working on called High Walk, which was at the early stages of the project, was which was about determining whether or not people who did more rehabilitation in a short amount of time, like and a a you’ll tell me exactly what the words are in a minute, whether they were going to benefit from that type of protocol.
As far as how that would impact their walking after stroke. and it was in the very early days, it was in the recruitment phase of the project that we spoke about it. We were hoping to recruit some people in Melbourne to come on and participate in the study. Can you give me a little bit of a rundown of what happened after you did recruit people and actually ran the study and what the study found? And then we’ll go into talking about.
One of your most recent studies that you’ve just released and has been published.
Kate (03:10)
Yeah, thanks very much, Bill. So we have we were successful, you helped us a lot because we definitely found some stroke survivors in Melbourne who tried the program with us. And so we ran the study
BIll Gasiamis (03:26)
Okay, so just a bit of context for everyone who missed the first episode with Kate. High Walk was a structured walking program delivered in the community, not in a hospital, not in acute rehab, but for stroke survivors who had already been discharged and were living their lives. The format was three hours a day, five days a week for three weeks. Forty-three hours of walking training in total. The question was simple.
Would people actually do it and would it help? Now I’ll link to the published paper in the show notes.
Kate (04:02)
with 47 stroke survivors. I think it’s really important to remind you that this was set in the months and years following stroke. So in the community.
when people had been discharged, most of them had been discharged from their other rehab. And we offered a very intensive program to try and improve their walking. We offered three hours a day, five days a week for three weeks. And on purpose really wanted to do something different and try an extreme, well it’s not extreme, but try a very high dose program. And our first finding,
was actually that people could do the program. So they really attended 91 % of the session and did over 500 exercise reps or steps of walking for every hour of the program. So I have to say that honestly I was surprised. I thought we might find that they’d attend some of the program but not
at all to the degree that they did, which was just fantastic.
BIll Gasiamis (05:17)
What what is it
about that that you found surprising? Now, I’m okay with people making assumptions, whether they’re researchers in stroke, whether they’re doctors dealing with stroke survivors, but I just really want to kind of get an understanding of where people what the perception of stroke survivors are out there. Cause I know that we look some of us look really injured and and have deficits that are obviously visible, and then there’s the
neurological deficits that people experience that you can’t see but people understand like can cause lack of commitment to exercise and all that type of thing. W what is it from your perspective that you think makes people underestimate stroke survivors?
Kate (06:05)
I do think three hours a day, every day is a big commitment. And when we spoke to the stroke survivors, they definitely talked about that, about needing to adjust the other things in their life, which may be work, maybe their other appointments, you know, all sorts of things in order to fit the program in. And anytime you do a study like this, where you’re really testing the concept, you’re testing the feasibility,
you’re trying to learn, you know, would they put, would people put aside their life for three weeks and commit to this three hour a day program? And I, you know, we, that’s why we test it within the trial to see if that is something that people would do. Do they feel that it would be value, it was valuable and it was worth giving up their time for?
Effectiveness of Rehabilitation for Non-Therapy PatientsWould they do it again? All of those kind of questions, which is really trying to shake up the norm in what is offered to people in the months and years after their stroke. Because who’s to say people should have access to no therapy? Who’s to say people should see a physio now and then? Maybe this kind of model of really working hard towards a goal for a short time.
is actually much more suitable and preferred by stroke survivors.
BIll Gasiamis (07:35)
I love it. I think it’s preferred because a lot of stroke survivors have got heaps of time on their hands. And we’d love to fill that time in. But also to be helpful. What I found, Kate, is there so many stroke survivors want to help other stroke survivors. And if they can be involved in a study that does that, they get excited. But also they see it as a cheap way to get into a program that they otherwise would not have gone. Now, what I say cheap, like that.
Kate (07:41)
sounds.
BIll Gasiamis (08:03)
an easy access way because sometimes get to get exercise fund funding for an exercise program is huge. to get back into a program after you’ve fallen out is difficult. And stroke survivors just look for any opportunity to be involved in a program, even if it’s going to test them. But what I love about it, it’s testing them, but it’s kind of done under supervision. So I think it’s a very safe environment for people to be involved in.
And I think that makes it a little bit easier to commit.
Kate (08:35)
Yeah, I think the first thing that you said really resonates, you know, even when people would ring me to volunteer or find out about the trial, their keenness to give it a go, their keenness to try something different and improve their walking was incredibly obvious. And most people really were very keen to participate, which was fantastic.
We definitely, you know, I think having that scaffolded, supported program was really important and we had very few adverse events. you know, there were, I won’t say there were none, there were a few times where people came back, we saw muscles and things, considering the amount of people and the amount of exercise they did, it was really very few. So I think we’re pretty confident that running it in that way is safe.
BIll Gasiamis (09:31)
Yeah. Well in total I think it was forty three hours of walking in three weeks.
Kate (09:37)
Correct, yeah.
BIll Gasiamis (09:38)
Yeah, that’s a massive effort for anybody really. Forty three hours, three weeks. I mean, most people don’t do anywhere near that, I don’t think.
Kate (09:43)
Thank you.
Correct.
BIll Gasiamis (09:48)
So there was an improvement, right? There was an improvement in walking speed. But what does that actually mean in someone’s life, especially a stroke survivor?
BIll Gasiamis (09:58)
Walking speed sounds like a pretty dry measure, but the reason researchers use it is because it maps almost directly onto what you can actually do in your life. There are established cutoffs, specific speeds that determine whether you can walk only around your house, whether you can get outside in your neighborhood, or whether you can move freely in the community. So when Kate talks about improvements in walking speed, she’s really talking about what
Doors open up for you.
Kate (10:30)
Yeah, so walking speed is a pretty cool measure actually. And it’s why we pick it because it seems pretty objective and pretty black and white. You you can walk faster. That’s great. But there’s actually been a lot of work to show that that carries over to what people can do in their life. So we’ve got some pretty clear speed cutoffs, which mean you’ll only be able to walk around your house. However, if you can get past the cutoff, you can start to walk.
outside in the community and if you get past the next cutoff you can actually walk more freely in the community. So it is really closely associated with what people can do which is why we picked it. And look the results were promising, they definitely were, but we learnt a really big lesson and that was
And again, this is exploratory in this kind of early study, but what it looks like to us is the program is most effective for those stroke survivors who are not doing therapy or active rehab. And really that’s what it was designed for. It’s designed to offer something for people when they need it as a boost, assuming that they’re not really accessing much therapy and going.
about their lives. But we did have some participants who were doing other therapy and it looked like it didn’t give those participants as much of a boost, which, you know, again, you don’t want to read too much into that, but perhaps if you’re already doing therapy, having a high dose boost isn’t as important or as effective. It’s really effective if you’re not doing therapy at the time.
BIll Gasiamis (12:19)
Yeah, like a kind of like a kick start, get things moving again and things going again.
Falls Risk and Prevention StrategiesKate (12:23)
And again, mean, and you guys tell me, you guys being stroke survivors, you know, tell me what you would prefer to access. The people who participated in the trial were really positive about it, said they would do it again and liked that idea of, you know, maybe doing a short, intense boost when they needed it. You know, maybe it’s every six months, maybe it’s every year. We don’t know yet.
versus, you know, maybe other people would prefer that kind of regular contact with a physio over time if that was possible for them. It’s really trying to challenge and think about different models, different offerings. And I’m particularly interested in the group of people who I know it is much harder for them to access therapy, as you said, Bill.
at some times it can be you pay for it or there’s not very much on offer. So can we find something that we can offer? Yeah, people who otherwise can’t.
BIll Gasiamis (13:24)
Mm.
And it’s something especially that’s effective, right? But what I love about it is perhaps the amount of hours that you required people to participate in walking, perhaps that also sort of breaks down some mental barriers of what people think they’re capable of. ‘Cause I imagine that initially if somebody overthought that even a little bit, they might be going, Forty three hours
Kate (13:49)
Yeah.
BIll Gasiamis (13:57)
of walking in three weeks. I don’t think I can do that. I’ve never done that. But then to find themselves in a position where they have done that might sort of trigger them to go down the path of, well, if I can do that, well then maybe I can do this. And then get them curious about other things that they’ve been assuming or defaulting to. No, I can’t do that.
Kate (14:17)
Yeah, Bill, we’ve got some work coming out soon, which is the interviews with the stroke survivors. And what you just said, there’s a quote that almost beautifully reflects that, just that idea of I didn’t think I could do it, but I wanted to give it a go. And I was really surprised with what I was able to do. And I think that’s absolutely brilliant.
BIll Gasiamis (14:41)
Yeah, very good. So your research keeps landing on the same group of people, people who have finished formal rehab and have no ongoing support. Is that gap getting better or worse? I have a suspicion I know.
Kate (14:57)
in Australia. Look, I will say generally until High Walk when we’ve done studies including stroke survivors, it has been the exception rather than the norm to be accessing ongoing therapy. Most of the time we can pretty much assume that their usual program will be no ongoing therapy.
BIll Gasiamis (14:59)
Well, let’s talk about Australia, yeah.
Kate (15:28)
I will say with High Walk, we did see a group of stroke survivors who were able to access ongoing therapy with programs like the NDIS.
BIll Gasiamis (15:41)
so for listeners outside of Australia, the NDIS is the National Disability Insurance Scheme. It funds support and services for Australians with permanent disabilities and depending on your age and level of impairment after stroke, you may or may not qualify. It’s a system that’s helped a lot of people, but as Kate points out, navigating it is a whole other challenge.
Kate (16:04)
And so we probably saw it split a bit more in people that couldn’t access ongoing therapy and some that could. Now, is that better or better or worse? You know, some get some, but I think
Part of the challenge in our system at the moment is it is so disjointed, so confusing and depending on your age and your level of disability, there may be something on offer for you, but there may not be. And I can only imagine how challenging and frustrating that is to navigate in the lived experience of it.
BIll Gasiamis (16:45)
Yeah. That that kind of brought you to your new study on falls. So stroke survivors fall t at at what roughly twice the rate of the general population kind of makes sense to me again. but why is it specifically? from my p experience it was learning to work walk with a new feeling in my left leg, proprioception issues, weakness, all that kind of stuff.
and maybe it was the way that I was initially connecting to my new new feeling. I wasn’t realizing that I was not as capable as I I was before. So I’d just get up and do a normal thing and have to and and not thinking about what I had to do would put me in a vulnerable position. I’d fall. Early on I was falling heaps. when I say heaps, you know, I fell two or three times, which was way more than I normally fell. but then later on I didn’t
I didn’t fall so much. W why do you think it is that specifically stroke survivors fall more often after a stroke?
Kate (17:55)
Like we do have some research answers for that, but they’re not rocket science. They would tell you things like, you know, stroke survivors typically have worse balance performance, which is linked to them falling over a bit more. I think the challenge in stroke is that the problems that people can experience after stroke are so wide and varied and many of them.
will increase that your risk of falling over. you know, whether it’s not being able to feel your leg as well, whether it’s your vision being affected by stroke, you know, there’s so many different things which can compound people’s falls risk. Yeah, and people after stroke are at a much higher risk of falling over.
BIll Gasiamis (18:45)
So it sounds like it’s so broad. There’d be so many different reasons. Vision is a really good one that I haven’t associated with falling because I don’t have vision issues. But that makes complete sense. then I I know there’s a lot of people have fallen because they have foot drop, and so on. So it’s probably one of those so many ways to end up on your butt after a stroke, I suppose.
Kate (19:11)
Yeah and like it falls beyond stroke are just a huge problem in Australia you know the health care system is full of people who have fallen and injured themselves so it is a really big issue and only compounded for people after stroke.
BIll Gasiamis (19:29)
Yeah, so it’s a big issue for people as they age as well.
Kate (19:33)
Yeah, absolutely.
BIll Gasiamis (19:34)
Okay. So then you did a systemic review of every trial testing exercise for falls prevention in stroke survivors, right? And only found three qualifying trials in the world.
Kate (19:46)
That’s right.
BIll Gasiamis (19:51)
I want you to sit with this for a second. Kate and her team searched every major research database, going all the way back to the beginning, looking for trials specifically designed to test exercise as afall prevention tool for stroke survivors. From that entire global body of literature, only three trials met the criteria. Three and stroke survivors fall at twice the rate of the general population.
That gap between the problem and the evidence is exactly why this work matters.
BIll Gasiamis (20:26)
So what does that tell us about where the field is at?
Tailoring Exercise Programs for Individual NeedsKate (20:29)
Well, the first thing to say, Bill, is they’re all done in Australia as well. So there are a lot more trials. They’re just not this small trials and trials that were doing things like trying to improve balance, but weren’t really trying to prevent falls. They kind of measured falls on the side rather than it being the real purpose of their study. So there’ve been three
quite large studies all done in Australia. And one of them was done by myself and my colleagues. And we did it, finished it very recently. And that was called the falls after stroke trial. And it was the first trial worldwide to actually provide an intervention and clearly prevent falls after stroke. So we were able to reduce falls by 33%.
in people that did the FAST intervention. So that was really exciting. And we wanted to kind of understand that relative to the other big trials that we knew existed and see if that gave us a body of evidence, which is why we did the systematic review. And look, the systematic review is not, you know, convincingly positive, but definitely looks like…
targeted exercise designed to prevent falls can reduce falls. But importantly, and both in the trial and in the review, even though it reduces falls, it doesn’t stop a person having falls completely. It just reduces how often it happens. And in people after stroke, who as we’ve said are at much higher risk of falling,
that is actually a pretty common result. we see that in other health conditions where they’re at high risk, that programs can decrease the risk, but very rarely take it away completely.
BIll Gasiamis (22:41)
Yeah. So you know that it doesn’t r reduce the number of people who fall, perhaps mm the same number of people that fall, but they’re falling less often. Is that what it’s finding?
Kate (22:54)
Exactly right. Yeah.
BIll Gasiamis (22:55)
Just to make sure that distinction lands clearly, what Kate is describing is that exercise reduced how often people fell, but didn’t necessarily reduce the number of people who experienced a fall at all. In a population as high risk as stroke survivors, even reducing the frequency is a meaningful result. It won’t show up as dramatically in the statistics, but in someone’s life falling three times instead of six times is a very different year.
BIll Gasiamis (23:26)
And in that study, is there an aspect or is there a part of the study that helps people learn how to fall? I remember when I was a child doing karate or something and they specifically teach you how to fall. Is is there a little bit of that in there?
Kate (23:43)
That’s very good idea. I guess what we did do was we put the whole program in the context of a person’s life. So we looked at their home. We looked at the safety around the home as in were there any risks and if there were risks we might try and eliminate them or we might practice them. But we also looked at
their where they go, you know, so going out in the community and again, what risks and what could we practice with them? So we did turn the lens of trying to stop them fall over, but very much in their natural kind of context. And of course we incorporated some exercise, which you won’t be surprised to hear. So they did particularly balance, but also balance and strength.
exercise. The cool thing for me about this program was the exercise was done a bit differently. So we call it habit-forming functional exercise and basically that means you don’t, it’s like the opposite of high walk, you don’t sit down and do a program for three hours but you look for opportunities during the day to do a little bit more. So you look for times where you might normally not be very active.
like when you’re waiting for the kettle to boil or something to make your cup of tea at night and you put an exercise in in that situation. So you’re doing lots of little bits extra, which the theory, you know, across a day is it can add up to quite a bit more than you’d otherwise be doing. And it’s been very interesting to run two very different trials at similar times and really look
you know, lots of people loved that habit forming approach. Some people loved the coming into the gym and doing multiple hours a day, which I think really highlights to me how we need to think about having different options and understanding what, how the person after stroke would like to continue to exercise.
BIll Gasiamis (25:59)
Has previous rehabilitation programs been f developed in a different with a different thinking style, like as in we’re gonna offer this and everyone needs to come to that. It’s like a one size fits all type of situation. Is that how they’ve come to be?
Barriers to Implementing New TreatmentsKate (26:17)
Yeah, and look, very often we do kind of research one program versus nothing. You know, later in the journey, sometimes we might compare programs to each other. But, you know, even in that situation, mostly in clinical trials, people are put in one group. It’s not the group they’d necessarily choose. Whereas I think if I have my clinician hat on now and I was working with someone, I’m much more
kind of thinking about what’s their style, what would they like to do, yeah, in terms of exercise. Cause I think you’re right, there is definitely not a one size fits all. I mean, there’s not amongst us all, are there? all
BIll Gasiamis (27:05)
That finding stopped me. A well-intentioned exercise program offered to everyone equally actually increased falls in the stroke survivors who were already the most vulnerable, the slower walkers. That’s the danger of one size fits all thinking in stroke rehab, and it’s exactly what drove the design of the fast trail that Kate goes on to describe.
Kate (27:28)
choose to exercise and find ways to exercise in our own way. And we like different things. So why would it be any different really after the stroke?
BIll Gasiamis (27:37)
Yeah.
Got it. Also, in healthier adults, exercise clearly prevents falls. So but but that doesn’t translate to stroke survivors. And we may have touched on it a little bit earlier when I asked a similar question, but is there kind of an understanding as to why that is? Is it again the generic standard because of the challenges that stroke survivors face with balance and w and perhaps weakness on one side or foot drop? Is that the same kind of
Kate (27:46)
Yeah.
think we already touched on the facts of how complex it was. I think one of the light bulb moments for me is a fantastic mentor to me is Professor Cath Dean. And she’s very interested in falls and a number of years ago did one of the other big studies. And in that big study that she did, she offered the same exercise to all the stroke survivors.
And then after she finished, she tried to, overall didn’t prevent falls and tried to unpack the results. And what she found was that in people that were better at walking when they did the program, she did prevent falls. But actually in the stroke survivors that were not as good at walking, they fell more with the program. And so I think back to what we just touched on.
Probably that one size fits all approach isn’t particularly helpful after stroke. And so Cath Dean designed the falls after stroke trial with Professor Lindy Clemson. And what they really thought about was tailoring it to people’s needs. So people that were slower, we focus more on their home and on safety and on exercise, yes, but within their ability.
Whereas people that were faster, we focused on really improving their balance and when they were going out and about making sure that they were at their optimum level to do that. And I think that distinction and thinking about people’s ability and that informing kind of what we put in place to try and help them prevent falls was really important. And perhaps that’s why
We were the first trial to get a big reduction in falls. Yeah, time will tell.
BIll Gasiamis (30:14)
Time will tell. And also like, how do you have a conversation with a stroke survivor now, given the uncertainty of the evidence, right? Like, should I exercise to avoid falls? how d how do you have that conversation? Because I imagine you have to have there has to be an opportunity for an assessment to determine the best way to go about putting that stroke survivor in a program or or or kind of r recommending a positive
regime, maybe.
Kate (30:48)
Yeah. So I think the broad answer would be, should you exercise to prevent falls? Absolutely. But should that exercise be tailored to you? You know, you probably need a pretty careful assessment and that exercise really at your right level of function. Plus that might not be enough. You might need the other layers like having a look at your home.
and look at how you get out and about in the community. Probably look just doing one aspect may not be enough to have a big impact on falls. For some people it might be, but I probably would think more about things other than just exercise.
BIll Gasiamis (31:36)
Got it. You know these amazing studies that you guys put time, effort to, money, stroke survivors put their resources to. W what happens with the information that you guys gather after the study? Where does it go? How does it get implemented? Does it get implemented?
Kate (31:54)
That’s a very good question. So of course we try and publish it and most publications are freely available and clinicians and health services obviously should be reading and digesting them but you can imagine how many articles get published every day. Most clinicians can’t keep up with that volume of evidence. In stroke we are extremely lucky because
we have stroke guidelines, which give us a summary of the evidence and really tell us as clinicians what we should be offering people after stroke. And the really cool thing in Australia is that they are living guidelines, which means as new evidence comes in, they’re constantly being updated to incorporate that
BIll Gasiamis (32:47)
Those guidelines are freely available at strokefoundation.org.au. I’ll put the link in the show notes. If you want to know what the current evidence says about any aspect of stroke recovery, that’s the place to go. And as Kate mentions, they’re living guidelines, which means they’re updated as evidence comes in, including the research we’re talking about today.
Kate (33:08)
new evidence. So clinicians have one spot.
to look, which will have a summary of the latest evidence and whether it should impact on their practice, which is pretty cool.
BIll Gasiamis (33:21)
Yeah, who puts
that together? Who puts that whole thing together?
Kate (33:25)
That’s the Strait Foundation bill, but it relies on a large team of volunteers, which I am also one around Australia, who volunteer to look at the evidence coming in for new topics and kind of work out whether it changes the guidelines or needs to be incorporated into the guidelines based on some set criteria.
BIll Gasiamis (33:53)
And then clinicians in what environment? Like would they be in a physical rehabilitation setting where they would have perhaps be developing a new program for their clients? I how would they access that information and then implement parts of it or all of it or some of it?
The Importance of Patient-Centered ResearchKate (34:15)
So it’s freely available. Anyone can go on and look at it, which is fabulous. I think you’re touching on a very important point though, which is having the information there and freely available doesn’t mean that it translates to clinicians doing it, you know, doing their everyday work day. It is much harder. And okay, let’s look at a new piece of evidence that we’ve just done as an example.
So I just led a Cochrane review on an intervention which is called electrical stimulation. And electrical stimulation means that you have electrodes on your skin and it can be very helpful if you’re very weak to improve strength in a muscle. And if you can’t do an activity to help activate the muscles, so you can start to perform that activity. And our Cochrane review
showed very positive results, particularly for improving strength. But for clinicians to do this treatment in their everyday practice, they have to have access to the machine in this case. They have to know how to use the machine. They have to know how to troubleshoot the machine if it’s not working. The stroke survivor has to want to try the machine.
It’s not painful, but it can feel a bit weird. Some stroke survivors I’ve tried it with don’t really don’t like the feeling of it. So there are a whole lot of factors that might mean the clinicians aware of the evidence, but it gets lost in between the actual doing of the treatment. And we try and do some work to bridge that gap, to actually work with
BIll Gasiamis (36:01)
Yeah.
Kate (36:11)
clinicians to help them to implement these things in their everyday practice and to know how to do that. And so for the review, what we were then actually asked to do was to write a paper for clinicians, which gave them some guidance and parameters for how to actually do this treatment within the clinic.
BIll Gasiamis (36:39)
Is that part of the funding of the study? Does that get kind of rolled in so that you can do the study, find the findings, see what is useful, report on it and then help people implement?
Kate (36:55)
Look, it can be, it absolutely can be and a lot of our government funding sources really want that bill. They don’t want you to just do it, they want you to say and how are you going to prepare for rolling this out nationally. But for most studies it’s doing a whole other study again which you need new funding for in order to roll it out. So if we look at the falls after stroke trial
highly effective. We’ve planned for how we would share and scale that across Australia. We planned that whilst we were doing the trial. But to really then practice and send it out on scale, we will need more funding for another trial. It’s called a Phase 4 implementation trial, just in case anyone’s interested.
in order to then systematically roll it out and look at what are the essential features that help us take it from being an effective idea to actually something that’s offered in everyday practice.
BIll Gasiamis (38:10)
I imagine the findings have to be pretty skewed in the positive so that it can go to that phase four stage.
Kate (38:16)
Absolutely. Yeah, I mean, if it didn’t work, there might be nothing to roll out necessarily, which makes sense. Sometimes there is because sometimes your control group might do something and you might say, well, actually doing that intervention that we didn’t think would be as good was actually quite good. And we can roll that out. So sometimes
BIll Gasiamis (38:26)
Makes makes sense, yeah.
Kate (38:46)
know, which is why we do research because you learn surprising things all the time about what works and what doesn’t work.
BIll Gasiamis (38:54)
Yeah. When when you talk about that those findings then being rolled out in clinic, like what kind of a clinic? Is that a occupational therapy clinic? Is that a physical rehabilitation clinic? Like w what kind of space does it get rolled out at and to who? So does it get rolled out to a couple of people who then train the others? How does that work?
Kate (39:19)
100%, they are fantastic ideas and thoughts. as you would think that as researchers, we just do the science and leave it, but we have to, especially in Australia where it’s very complicated, think practically about, where is this, where does this intervention sit in the longer term? And look, there is debate on that because some people say, don’t let that restrict you. If you’ve got a new idea, try your new idea.
and worry about that later. But I think if you’ve been a clinician and you’re practical in your thinking, you know, I’m always, so for our high dose program, I still don’t know where it sits longer term, but I spend probably too much time thinking about it. You know, it doesn’t sit in healthcare. You know, do you go back to a community rehab or community health center at your local hospital to access it?
in the same way you might access cardiac rehab, you know, when you need it after a heart attack? Does it sit in, you know, disability and aged care sectors and it’s NDIS funded? I don’t even know if that’s possible anymore, you know, or whether they would look at that. But we do. Yeah, I think it’s important to consider that because I want to make sure I’m
investigating something that has the ability to be scaled up and be rolled out so stroke survivors can access it if it is found to be effective. But as you’re saying, there’s no one size fits all. know, High Walk would be run in some kind of clinic or community gym, whereas our Falls program is about therapists coming to your home. And so, you know,
who those therapists are and where they’re coming from needs to be determined. But it is an important question. And now they’ve found it, 100%.
Future Directions in Stroke RehabilitationBIll Gasiamis (41:21)
And how they’re funded. And then and
then the stroke survivor kinda knowing about that and saying, Well, I’m at home. This is where I’m at most risk of my falls. I need some support here. Can you send somebody along here? Like even that I I can’t imagine is a conversation that happens. The stroke survivor doesn’t know what they don’t know. So they wouldn’t even probably think that there was a service available if there was one. And then
how you would access that and be funded for that and how you would get somebody to your house regularly to do that. The mind boggles. I wouldn’t even know w where to begin. And that’s one of the frustrating and challenging things. I think the reason why I’d like to have clinicians, researchers on the podcast is to give the stroke survivors an idea of what some of the challenges are when it comes to the amazing work that clinicians, researchers are constantly doing to improve the life of
you know, the ho the cohort that they’ve decided that they’re going to support in their work. And then to kind of make stroke survivors think about like how can they engage with the research that they’ve come across that’s been done. So classic example is now I can jump on any one of my AIs and I can do a very quick research for PubMed articles about falls after stroke.
And it will bring up maybe two or three, maybe and then those two or three will have links internally that will take you to other studies that are of a similar nature. But if I found one of those, I’ve never kind of met anyone that a stroke survivor that would go, Okay, I found this study. I’m gonna go and ask my occupational therapist about it. Can we do something about that? I think the what I’m trying to get at is b the the communication pathway should be
In both directions. It should come from I discovered this because I was curious. I don’t want to keep falling at home. Can you help me implement it or something similar? And then there’s your part, which is normal, the normal part, which is, by the way, I studied this. This is what I found. You should know this. I think it should happen both ways. And that’s kind of the bridge that I’m trying to gap. the gap that I’m trying to bridge is like bring the information to people, but also bring people.
Kate (43:28)
Yeah.
BIll Gasiamis (43:40)
To go and get the information because there’s so much of it. And I’m constantly getting asked, have you heard about this or have you heard about that? And it in the past it was no, I I haven’t, and I don’t know where to go and find out, but now I do. It’s really easy. and I get frustrated when I hear about new studies, new research coming out in my own conversations with doctors and researchers, et cetera, which kind of fell on deaf ears and they were like, mm-hmm.
I don’t know about that or I don’t have time for that or I haven’t looked into that or I wouldn’t know where to start with that. That was having so much information at your fingertips now has never been easier to access and then to get specific information for your specific condition or challenge.
Kate (44:12)
Yeah.
BIll Gasiamis (44:26)
So
so that’s kind of where I’m at with the challenge of so much information, it not getting into the right hands, whether it’s the stroke survivor or the clinician.
Kate (44:35)
And look, I can still remember as a clinician, someone coming to me, actually with a stroke foundation handout and saying, I haven’t received this. Why not? You know, and it’s one of my favourite moments as a clinician, because I just think, as you said, it is so fantastic. And having that active engagement and advocacy, if you’re able to do it, is just brilliant.
It is like, I’m not going to defend clinicians not with the most up-to-date evidence, but only to say it is challenging because the volume of evidence that comes through is a lot. But I do think it is our responsibility to stay up-to-date and to move with the times. And that can be hard because some of the times things we learn at uni, we now know are not the most effective.
thing to offer and we have to be able to let those go and then sometimes new things are proven really effective and we have to be ready to learn and take them up and move with the times and you know as clinicians we have that responsibility and always in my mind is that thought of am I offering the stroke survivor I’m working with the best treatment that I could be offering.
and challenging myself to really be thinking about that. Yeah.
BIll Gasiamis (46:12)
Yeah. How long have you been involved in the field?
Kate (46:16)
more than 20 years. Yeah.
BIll Gasiamis (46:18)
Yeah.
It’s interesting to come across somebody who’s been involved in a field in more than twenty years and still talking about the same problems, the cut through. You know, how do you get to the end user? How does the end user get to you? And how do you update your knowledge so that you can continue to provide the most up to date and fresh knowledge? And I wonder if there is ever going to be a solution or is it just going to be the perpetual question that we always ask?
that we’re always moving towards and never really get to.
Kate (46:53)
I think it’s something we always are going to need to be mindful of. And we probably will never hit the switch where we go, yeah, we’ve just got it because, you know, the science is constantly evolving. I think it does help coming from life as a clinician, because I know what life’s like in a busy, acute, a busy rehab, going to see people at home. I can imagine.
the challenges but was also lucky enough to work in places where we worked together to overcome them and really tried to push kind of for excellence in stroke care and I think having seen that and being mentored by people who were excellent, very passionate clinicians, yeah probably turned me into something similar myself but not you know.
it’s something we have to keep continuing to work towards. And I think you said it very well before, we do these clinical trials, we spend a lot of money, time and effort to show something is effective. It is very important that we then work just as hard to translate it or implement it into clinical practice and make sure that people after stroke get that benefit from it.
BIll Gasiamis (48:19)
What’s the hardest part in this line of work for you to overcome?
Kate (48:26)
That’s a very loaded question, Bill. Honestly, the hardest part is the process of getting the work funded. So we apply for government funding for the research, but there is so much really important valuable research to be done in health across Australia. And so getting our work funded.
BIll Gasiamis (48:35)
Yeah.
Kate (48:54)
is a constant challenge. We would love to do more work. It’s just,
BIll Gasiamis (49:01)
Yeah, I can imagine making yourself stand out and forever spruking your thoughts, your idea as being should being having to be at the top of the funding list would be a never ending and impossible task.
Kate (49:16)
It’s a challenge.
BIll Gasiamis (49:18)
Yeah. and what is the most rewarding part about the work that you do? across the clinic clinical part and the research part, is this something that stands out that kind of makes you get sucked in? I know that if I come across something that’s really rewarding, even if it took me five decades to get there, then I c I I’m chasing the next rewarding dopamine hit in that space and then I’m gone for another four decades. Like what is it for you that makes
that feel rewarding and worth pursuing.
Kate (49:52)
I think it’s thinking about being able to think about what do people after stroke need in order to better their outcome or better their lives. And then being able to think about, what is that thing, design it, test it, know, offer it to stroke survivors and see what they think about it. And if it is effective, I find that whole process really rewarding.
And when people say, yeah, we really like your idea, we think that fills a big gap. I think that’s really valuable. You mentioned it before, I will say we do, and probably much better than 10 or 20 years ago, want to understand also what people after strokes priorities are for research. And there’s a number of pieces of work at the moment saying what…
what is it actually that you think would improve your life? Rather, I think you said it shouldn’t be a one-way street where I go, well, obviously it’s a walking program or it’s this, you know, because you might say, actually, that’s not what we need at all. We need something to address this other problem. And that is also really vital. And we always consider, yeah.
BIll Gasiamis (51:06)
Next.
Kate (51:16)
what people actually want when we’re thinking and designing these ideas as well.
BIll Gasiamis (51:23)
Yeah, that’s cool. what’s next for your research? What questions are you looking to answer?
Kate (51:29)
Well, I would love to continue the high walk journey. As we said, we’ve proved the concept, we’ve shown that it’s feasible and promising. The next thing for that is to do what we’d call a fully powered trial, which is a trial with more people to really show that that program is effective at preventing, at improving walking, but also is value for money, which comes back to…
what you were talking about where we have a job to do to say if the government for example invests in this kind of program that because it improves people’s lives gets them fitter and healthier actually economically it’s worth doing which is you know maybe a strange way to look at it but really helps us to then
say, we need to scale it up and offer it to a lot of people that as we spoke about before.
BIll Gasiamis (52:31)
It’s the cost benefit ratio kind of thing. They’re gonna work out. Well, if we don’t rehabilitate these people, it’s gonna cost us this much. If we do, it’ll cost us this much, which hopefully will be less. And then the burden on the community and on the public purse will be less.
Kate (52:33)
It’s a classic.
100%. And importantly, things like the improvement in people’s quality of life are very important in that calculation. So definitely seen as a real positive. If a program like High Walk, for example, can improve people’s quality of life, that is one big aspect as well about whether it’s good value for money, so to speak.
BIll Gasiamis (53:17)
And with regards to High Walk, are you actively on that campaign trail to get the funding, to get it over the line and to implement it further?
Kate (53:27)
100 % Bill, yeah, we’re trying very hard to try and get the next arm of that funded. And I will say, we’re very, very grateful to the Stroke Foundation that funded the pilot trial and really allowed us to test that idea. And without that, we wouldn’t have the ability to now be looking for bigger government grants or government funding to try and take it further. So we’ll acknowledge.
the importance of that kind of seeding money to test these early ideas. And as you said before, kind of work out if they’re promising to start to take further along the journey.
BIll Gasiamis (54:12)
Wow. I really appreciate your time, Kate. Thank you so much for the work that you do, for being interested in this topic, for making your work about other people, and for following through and kind of trying to make the next thing always happen on behalf of people you’ve never met before. I really appreciate it.
Kate (54:35)
Thanks very much, Bula, that’s very kind.
BIll Gasiamis (54:37)
that’s a wrap on another episode of the Recovery After Stroke podcast. The thing that stays with me from this conversation is that number three trials, falls after stroke affect the majority of survivors. They affect confidence, independence, and how far people are willing to push their recovery.
and the entire global evidence based on exercise-based false prevention in this population comes down to three trials. Kate’s work is part of changing that, and the high walk results show that chronic stroke survivors have more capacity than they’re typically given credit for. If you want to find Kate’s work, look for the high walk phase two trial in the journal Stroke, published in January 2026, and her systemic review on false prevention in
Clinical rehabilitation also in 2026. Both are worth your time. If today’s episode resonated with you, go back and listen to episode 257. That’s where Kate first joined me to talk about High Walk before the results were in. Hearing the two episodes together gives you the full arc of the research. Please share this episode with someone who needs it: a survivor, a carer, a physio, a family member, anyone who’s been told.
That falls after stroke are just something to manage rather than something to prevent. This research says otherwise. My book, The Unexpected Way That a Stroke Became the Best Thing That Happened, is available at recoveryafterstroke.com/slash book. And if this show has helped you and you can support it financially at patreon.com slash recovery after stroke, please go across and have a look and see what you can do.
I’m Bill Gassiamas. Thank you for listening to Recovery After Stroke. I’ll see you in the next episode.
The post Walking More, Falling Less – A Researcher’s Mission to Stop Stroke Survivors Hitting the Ground appeared first on Recovery After Stroke.
Lion’s Mane Mushroom and Brain Health: What Four Clinical Trials Actually FoundMany stroke survivors and people managing cognitive decline more broadly eventually ask the same question: Is there anything beyond physiotherapy and medication that can actively support brain healing? Not symptom management. Actual repair.
Lion’s Mane mushroom (Hericium erinaceus) is one compound that has gathered genuine clinical attention. It is not a cure, the human trial evidence is still limited in scale, and it is not a replacement for the fundamentals of brain health. But the mechanism is unusual, the safety profile is consistently good, and for anyone serious about their brain, the research warrants an honest look.
Why Lion’s Mane Is Neurologically UnusualMost supplements that claim to support brain health cannot cross the blood-brain barrier, the tightly regulated membrane that controls what enters the brain. Without crossing it, any direct effect on brain tissue is limited.
Lion’s Mane contains two families of bioactive compounds found almost nowhere else in nature. Hericenones come from the fruiting body, the visible mushroom. Erinacines come from the mycelium, the root-like underground network. Both stimulate the production of Nerve Growth Factor (NGF) and Brain-Derived Neurotrophic Factor (BDNF). These are proteins the brain uses to grow new neurons, maintain existing ones, and strengthen the connections between them.
Crucially, erinacine A, one of the key mycelium compounds, has been confirmed in preclinical studies to cross the blood-brain barrier. That is not a trivial distinction. It is one of the reasons researchers have taken this mushroom seriously.
“These are proteins your brain uses to grow new neurons, maintain existing ones, and build and strengthen the connections between them. They are, in a very real sense, your brain’s repair and maintenance crew.” — Bill Gasiamis
What the Human Clinical Trials FoundFour published human clinical trials have examined Lion’s Mane. Here is what each found:
Mori et al. (2009): In a randomised, double-blind, placebo-controlled trial, 30 older adults with mild cognitive impairment (MCI) took Lion’s Mane supplement or placebo for 16 weeks. The Lion’s Mane group showed significantly better cognitive function scores at weeks 8, 12, and 16. When supplementation stopped, scores declined again within four weeks, suggesting the effect was tied to ongoing intake, not a placebo response.
Saitsu et al. (2019): A multicenter RCT tested 12 weeks of oral Lion’s Mane in older adults. Participants in the treatment group showed significant improvement on the Mini-Mental State Examination (MMSE) compared to placebo. No adverse effects were observed.
Nagano et al. (2010): A 4-week RCT using Lion’s Mane-enriched cookies found significant reductions in self-reported depression and anxiety in women compared to placebo, suggesting effects extend beyond cognition to mood and emotional regulation, possibly via the gut-brain axis.
Docherty et al. (2023): A double-blind pilot study from Northumbria University tested 41 healthy young adults aged 18–45. After a single dose, participants performed significantly faster on the Stroop task, a measure of cognitive processing speed and flexibility. After 28 days, there was a trend toward reduced subjective stress. This was a small study, and results should be interpreted cautiously, but it suggests Lion’s Mane effects are not limited to populations already experiencing cognitive decline.
The Stroke-Specific Preclinical DataFor stroke survivors, the preclinical research adds another dimension.
In a 2014 animal study, erinacine A reduced brain infarct volume by 22–44% in ischemic stroke models (depending on dose), and significantly lowered pro-inflammatory cytokines, including IL-1β, IL-6, and TNF-α markers of the neuroinflammatory cascade that follows stroke.
A 2022 study found that erinacine A helps preserve glutamate clearance in the brain after ischemic injury. Excess glutamate is one of the key mechanisms of neuronal death after stroke, so anything that helps regulate it post-injury is clinically relevant.
These are animal studies. They do not translate directly to human outcomes. But they provide a biological rationale that supports why clinical researchers are now investigating Lion’s Mane in neurological recovery contexts.
What the Research Does Not Yet Tell UsThe limitations matter, and any honest assessment must include them.
All four human trials are relatively small, none exceeds 100 participants. We do not yet have large-scale, long-term RCTs in stroke survivor populations specifically. The optimal dose, duration, and form (fruiting body vs mycelium vs dual extract) have not been established in human trials. Direct confirmation that erinacines cross the blood-brain barrier in humans rather than in animal models does not yet exist.
Bill says it directly in the video: “The human trial data is still relatively limited in scale. We need larger, longer trials.”
Practical Questions to Raise with Your DoctorIf you are considering Lion’s Mane supplementation, the following questions are worth raising with your neurologist or GP:
Is it safe alongside my current medications? Theoretical interactions exist with anticoagulants (warfarin, aspirin, clopidogrel) and antidepressants, not confirmed in human trials, but worth disclosing. Anyone on blood thinners following a stroke should have this conversation before starting.
What form should I look for? Products should specify standardised hericenone content (fruiting body extract) or erinacine A content (mycelium extract). Products listed only as “mycelial biomass on grain” typically contain very low levels of active compounds and high levels of starch from the growth substrate. If the label does not specify active compound content, treat that as a quality flag.
Are there any trials I could join? ClinicalTrials.gov lists current recruiting studies for Hericium erinaceus and cognitive function worth checking if you are interested in contributing to the evidence base.
More information: https://recoveryafterstroke.com/book | Support the podcast: https://patreon.com/recoveryafterstroke
*This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
The post Can a Mushroom Help Your Brain Heal? The Science Says Maybe appeared first on Recovery After Stroke.
Stroke Impact on Family: When the Caregiver Becomes the PatientThere is a particular kind of reckoning that happens when the person who has spent their life caring for others suddenly needs care themselves. For Kathy Cunningham, that moment arrived without warning.
Kathy worked in healthcare for years, a field built on attending to others in their most vulnerable moments. When stroke entered her life, she was confronted with something her training had never quite prepared her for: accepting help. In Episode 408 of Recovery After Stroke, Kathy sits down with her sons Sean and Paul Monahan to talk openly about the stroke’s impact on the family, not as a concept, but as a lived experience shared across three people who navigated it together.
When the Expert Becomes the PatientHealthcare professionals develop a particular relationship with illness. They understand the biology, know the pathways, and can often anticipate the trajectory of a condition before the patient has fully processed what is happening. That knowledge is a professional asset. In a personal medical crisis, it can also become a barrier.
Kathy’s background meant she understood exactly what a stroke meant and what recovery would require. What it did not prepare her for was being on the receiving end: needing to ask, needing to wait, needing to trust others to do the things she had always done herself.
Her sons Sean and Paul were part of that support system, two adult men who stepped into a caregiving role they had never anticipated, in a household that was already carrying more than most.
A Household Navigating Stroke More Than OnceWhat makes Kathy’s story particularly complex is the context it unfolded in. Her household had already been touched by stroke before her own diagnosis, meaning Sean and Paul weren’t approaching caregiving as something entirely new. They were deepening an already demanding commitment.
The stroke impact on family is rarely a single event. It accumulates. Each new development shifts the balance of who does what, who needs what, and who is available to give it. For Sean and Paul, supporting their mother meant learning to hold space for her recovery while managing the weight of their own experience alongside it.
That is the part of stroke that rarely makes it into clinical documentation: the sustained psychological and logistical load that falls on the people closest to the survivor, day after day, over months and years.
The Challenge of Accepting HelpOne of the most consistent patterns across stroke recovery is the difficulty survivors have in accepting help, and it is amplified, not softened, when the survivor has a background in caring for others. The implicit logic runs: I know how this works. I should be able to manage this.
Kathy speaks to this directly in the episode. The process of allowing her sons to step forward to organise, to accompany, to simply be present and available required a different kind of skill than anything her career had developed. It required recognising that accepting care is not evidence of incapacity. It is its own form of strength.
For families supporting a stroke survivor, this distinction matters. When a survivor resists help, it is not always stubbornness. Often, it is someone navigating an identity that has been fundamentally disrupted by what happened to them.
What the Family Perspective AddsSean and Paul’s presence in this conversation shifts something in the usual stroke recovery narrative. Most episode conversations centre on the survivor. This one deliberately includes the view from the other side, the sons who watched, worried, helped, and carried their own weight through it.
What they share is instructive for any family in a similar position. Stroke impact on family plays out differently depending on who is watching, who is helping, and who is still finding their way back to the person they knew before the stroke. Their account is not about burden. It is about recalibration, finding a new way to be a family when every role has shifted.
What Families Can Take From This ConversationIf you are supporting a stroke survivor or a survivor who has struggled with accepting help, three things stand out from this episode.
The first is that a survivor’s professional identity shapes their recovery. Someone who has spent their career as a carer may need more time and explicit permission before they can accept care themselves. Naming this directly with patience, not pressure, opens the door.
The second is that adult children carry more than they show. Sean and Paul’s willingness to speak plainly about their experience is a reminder that caregiving has an interior weight that often goes unspoken. Creating space for that conversation within a family is not weakness. It is what keeps families intact through long recoveries.
The third is that stroke impact on family is not a moment – it is a process. It evolves, shifts, and asks different things of different people at different stages. Families who move through it with honesty tend to find a stronger dynamic on the other side.
If this episode resonates with you, Bill’s book The Unexpected Way That A Stroke Became The Best Thing That Happened explores the tools that have helped stroke survivors and their families navigate the long road back. You can find it at recoveryafterstroke.com/book.
If the show has helped you or someone in your life, you can support it financially at patreon.com/recoveryafterstroke.
This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
The Nurse Who Had to Learn to Accept Care | Kathy Cunningham with Sean & Paul MonahanWhen the family’s caregiver becomes the patient, everything changes. Kathy Cunningham and sons Sean and Paul Monahan share the unfiltered truth.
Highlights:
00:00 Kathy’s Life Before the Stroke
03:54 Family Reactions and Hospital Experience
12:31 Coping with the Aftermath
15:33 Stroke Impact on Family
21:24 Reflections on Control and Independence
28:33 Facing Mortality: A Son’s Perspective
35:19 Navigating Family Dynamics During Crisis
45:28 Understanding the Impact of Stroke on Relationships
53:21 Finding a New Normal After Recovery
01:04:58 Reflections on Healing and Future Aspirations
Transcript:
Kathy’s Life Before the StrokeBIll Gasiamis (00:00)
Welcome to Recovery After Stroke. I’m Bill Gasciamas. Today’s episode is one that doesn’t happen often on this show. And I think that’s exactly what makes it worth your full attention.
Today I’m joined by three guests, Kather Cunningham, who is a healthcare professional and who is the person who experienced a stroke. But what makes this conversation different is who’s sitting beside her. Her two sons, Sean Monaghan and Paul Monaghan, who were there through every stage of her recovery. We talk about what stroke does to a family when the person who has always done the caring suddenly needs the care themselves.
We talk about what Sean and Paul experienced on the other side of that, what caregiving looks like when it’s your parent and it’s not a choice, and when your household has already been touched by stroke before. And we talk about the thing that Kathy found hardest, accepting help.
If you’ve been listening to this show for a while, you know that recovery rarely belongs to just one person. It belongs to everyone around them. This episode is for the families.
Before we get into it, if you’re in the middle of your own recovery or supporting someone through theirs, my book, The Unexpected Way That A Stroke Became The Best Thing That Happened, was written for exactly this moment. You can find it at recoveryafterstroke dot com slash book.
And if this show has helped you or someone you care about, you can support it financially at patreon dot com slash recovery after stroke. Every contribution helps keep the podcast running.
BIll Gasiamis (01:30)
Cathy Cunningham, Sean Monahan and Paul Monahan, welcome to the podcast.
Kathy Cunningham, & Sean, son (01:35)
Thank you. Nice to be on. Glad to be here.
Paul (01:36)
Thanks.
BIll Gasiamis (01:38)
So Cathy, can you tell me a little bit about what life was like before the stroke?
Kathy Cunningham, & Sean, son (01:46)
Okay. So I I was working full time as a s s director of health services at a small I mean a medium private school, grades five through twelve. and I was the director of health services, a school nurse. and I had worked there for twenty five years, at Thayer Academy. and so that
Tuesday, the day of the stroke, I had worked as usual, you know, put in my eight to ten ten hours. and I don’t remember until day ten. so Sean it would be better to describe the first the he ’cause he had to manage everything on his own, w with Paul, and so he maybe he could describe what happened.
Family Reactions and Hospital ExperienceBIll Gasiamis (02:41)
Yeah, Sean, tell us a little bit about perhaps how you experienced what happened to your mum.
Kathy Cunningham, & Sean, son (02:47)
So she woke me up. I was am still living here. She woke me up around two in the morning saying that she had severe esophageal pain. Yeah. She described as a nine out of ten, ten out ten. and my first instinct was to call an ambulance, but she said, No, no, no, maybe it’ll let up
You know, like another ten, fifteen minutes. And so I was a little bit like, you know, eventually, you know, I I convinced her I to let me drive her to the hospital. And it was there in the ER where she had a stroke. she was you know, had nausea and was vomiting. and when I was like helping
like you know clean up clean it up whatnot I noticed that she wasn’t like responding at all it was just glassy eyed and so I pressed the you know emergency call button because there wasn’t a doctor or nurse in at that time and there it wasn’t somebody who had seen her prior so they weren’t aware of the change at all. So I had to like very
emphatically tell them like, no, I sh this is she wasn’t like this, you know, two minutes ago. and of all the places to have a stroke, not that there is necessarily a good one. an emergency room is a not a bad one. Because they were able to get her into a CT in less than five minutes to determine whether it was a clotting stroke or a hemorrhagic stroke, which is what
BIll Gasiamis (04:31)
Yeah.
Kathy Cunningham, & Sean, son (04:42)
She ended up having.
BIll Gasiamis (04:43)
Did
you drive to the hospital? How long did that drive take? And was the ambulance not an option at that point?
Kathy Cunningham, & Sean, son (04:49)
we’ll
No, the ambulance definitely was an option. and thankfully though the hospital is close. it only took maybe ten, fifteen minutes to get there. No traffic at, you know, three in the morning. and
BIll Gasiamis (05:10)
Probably not a bad call, know, like not a bad call. Obviously what we want is an ambulance there immediately. The instinct of a stroke survivor very often and anyone going through a difficult situation, heart, you you hear about it all the time is the patient is going, no, no, she’ll be right. This is, you know, this is going to pass. It’ll be fine. We’ll get over it. And the initial reaction to call for help
Kathy Cunningham, & Sean, son (05:10)
It was too
Yeah.
BIll Gasiamis (05:38)
is the instinct and then the head gets involved and does, undoes all the good work that the instinct did to call for help because you’re thinking automatically about how much is that going to cost? Does somebody else really need an ambulance? Am I just overplaying it? Like you do all this weird stuff in your head and then what happens is, you know, somebody else has to take drastic action on your behalf because as a good son,
daughter, parent, sibling, you listen to what the person is telling you and then they convince you to go against your own instincts. It is happening all over the planet, every culture, everywhere you’ve ever heard of somebody being unwell. So now you two guys are in hospital. Paul, when is the first time you find out about it?
Paul (06:31)
Okay, Sean called me. I want to say maybe a couple hours ago. I don’t know how long you guys were at the hospital before it happened and before you figured out because ultimately she was moved from one hospital, which was kind of local, more local to where she lives and then into kind of the major city nearby for where they have obviously more care. But I was, you know,
waking up early to just get ready for work. I think Sean called me and kind of explained the situation in short order of, hey, I’m at the hospital with mom. think she’s having a stroke. They’re talking about moving her into into Boston and, you know, don’t yet know when or, you know, who’s going to move her, how this is all going to happen. I just obviously had to react to that in a kind of a dazed early, early morning.
stupor of like, what’s going on? Okay, definitely not going to work. Where do I need to be? And so it just kind of unfolded then from there. So it was pretty unsettling as of getting a phone call early in the morning and waking up to that sort of a message.
BIll Gasiamis (07:51)
Are you at home with your family and you’re attending to the regular routine that you usually have to go through and then kind of put that on pause and what did you head down to the hospital? do you manage that?
Paul (07:54)
Yeah.
Yeah,
exactly. It’s kind of the, you know, wake up my spouse and explain what’s going on. You know, quickly negotiate. can you take care of things at the house while I zoom off to go figure out and help my brother navigate this? And so ultimately, I think by the time I had put on clothes, got my car keys and was headed out the door.
Sean had told me that they were headed into Boston. And so instead of driving to the local hospital, I just met them then in the emergency room in Boston at the hospital. And so, yeah, met Sean in effectively the emergency room lobby and then walked me back into the actual room that she was on, on a bed in there.
She was still, you know, alert. would say semi aware of what was going on. Obviously, there was kind of this look of concern, but some level of comfort. was weird as it is to say on your face, mom, that you were recognized where you were, but understood it was grave, you know, felt settled that we were there and helping, you know.
Kathy Cunningham, & Sean, son (09:21)
Yeah, and I don’t
Paul (09:30)
that you had good care obviously from the hospital and that we were there to help as well. So yeah.
BIll Gasiamis (09:34)
Hmm.
Do you remember any of that part, that very early part?
Kathy Cunningham, & Sean, son (09:39)
No, I didn’t
not for the first ten days. I I didn’t I don’t the very first memory I had was in the middle of the night when I was at Beth Israel in Boston, the the major hospital, when I was being wheeled out of surgery and I had this paranoid feeling that I was being kidnapped and I I in and out of consciousness that I was aware I be became a aware of the
the familiar voices of my siblings were comforting for me and I I worked out that I like I then I was reassured that my that I wasn’t re wasn’t being kidnapped. So
BIll Gasiamis (10:23)
Do remember
the esophageal discomfort?
Kathy Cunningham, & Sean, son (10:26)
No, I don’t. And it was it’s a common a ver ver familiar pain that I’ve had since childhood and but but I had increasing severity and and associated symptoms of the nausea and vomiting. and it that that that was newer for me and but I don’t remember this particular episode at all.
BIll Gasiamis (10:51)
Sean, did you start noticing your mother dipping?
Kathy Cunningham, & Sean, son (10:57)
well, so the at first it was like a sudden just like glassy eyed no awareness. I’m not sure if it’s because of they they gave you hyper hypertonic or a salient solution basically to try to reduce the swelling. And so while she was at the you know, Beth Israel, the main hospital, there was like a little bit of improvement that, you know, gave us all hope, like, okay, she’s coming out of it. Maybe it was like, you know, healing up, you know.
BIll Gasiamis (11:13)
Mm-hmm.
Kathy Cunningham, & Sean, son (11:27)
she got treatment fast, so and but then it quickly, you know, her awareness declined and then you know we had to start talking about like what the next plans of treatment were.
BIll Gasiamis (11:47)
So how did they manage that? So your mom’s kind of declining. They’ve, they’ve discovered that she has a hemorrhage. And then what’s the next step? What do they do next?
Coping with the AftermathKathy Cunningham, & Sean, son (11:55)
Yeah.
So based on well as soon as they had a spot available, they moved shirt to the ICU, the neur the neuro ICU, they had a sp specifically for neuro problems. One second. And and as I as I was as they told me later that the decision was that that they would wait a little bit and pressure once the pressure got to ten millimeters.
which I don’t know what that means. I I’m a nurse. Yeah. So the they gauge the severity by how much laterally the midline of the brain hemispheres is deviated from the center. and so the cutoff to where like, we need to take in invasive action, you know, is ten millimeters. And thankfully Paul and I and my
And our stepdad, who was in California at the time, he was able to fly back, you know, and get involved with the discussion of planet care, and that we were all on board even before the ten millimeters hit, that like if if that comes to that point, you know, we’re on board with doing what’s called a craniotomy. so
Which is pretty scary to think about and but it no it was it was I we didn’t we didn’t push back at all on the timeline. It was basically it would it was discussed and we were on board with it so that when it hit the point where it’s like we need to do it, we were all just like, okay, good to go. Well, yeah. Yeah.
BIll Gasiamis (13:29)
Was it avoided?
so to speak.
Kathy Cunningham, & Sean, son (13:55)
and and I think Paul and I and Bill were not only on board with each other, but importantly we were all on board with what we thought she would want to be done in terms of, you know, plan of a the plan of attack or treatment.
Paul (14:14)
interventions
BIll Gasiamis (14:14)
Yeah,
Paul (14:15)
and treatments and whatnot.
BIll Gasiamis (14:16)
Paul, I imagine you guys weren’t as nonchalant as your brother said. Yeah, all good.
Paul (14:22)
Yeah.
Kathy Cunningham, & Sean, son (14:22)
Yeah.
Sounds good to me, you know.
BIll Gasiamis (14:25)
I imagine it was a little bit more dramatic than that. tell me a little bit about that part, Paul. Like how do you kind of manage and deal with the knowledge that there’s a possibility that in a few moments, your mom could be missing part of a skull.
Stroke Impact on FamilyPaul (14:40)
Yeah, it was definitely stressful and not necessarily nonchalant. And I think part of it too was the acute nature, obviously, of the initial stroke event in the local hospital ER to then being transferred and seeing our mother’s kind of state of health decline. There was…
because it was a hemorrhagic stroke, the primary intervention was kind of a wait and see, right? A monitor of status of inflammation and her health, all the blood pressure and whatnot. once there seemed to be some level of stability approaching where it was no longer a strong acute phase, we were kind of in a wait and see moment. So it wasn’t like a, know,
within a six hour period, we were forced with making a decision. It did take a day or two, I think, where she ultimately stabilized and it was now monitoring that midline shift and her other health measures and whatnot. So we had a little bit of breathing room, if you will, to discuss amongst the three of us about what do we think is the right call? What do we think Cathy wants?
for her interventions in terms of quality of life on the other side. We were able to have good conversation with the doctors and the care staff about what are the options, what are the implications. And I felt like they did a good job of educating us about the risks. So we could then be on that same page of, yes, we’re okay with trying to use some of the saline and other interventions in the interim to try to continue stabilizing and hopefully come out of that. But then,
We’re all also on the same page of when the call needed to be made about, hey, surgical intervention is the right thing to do. there wasn’t any hesitation there. It did, you know, come again in the middle of the night. given kind of how, how acutely all this stuff came on. Yeah. Certainly very grateful for my spouse to be able to be at home, take care of things at the house. I actually ended up staying, you know, at
my mother’s house, sleeping on the couch to just be with Sean if there were to be a call. And that did happen relative to the surgical intervention with the craniotomy where we got the call at like two in the morning or three in the morning and said, hey, we’re at the point where we were recommending we’re calling to get confirmation that we can proceed. so thankfully we didn’t have to have that discussion in a groggy state.
like the first call I’d gotten from Sean was. that there was some level of reassurance there that we felt like we were making the best decision we could.
BIll Gasiamis (17:36)
Hmm.
with regards to making the best decision you could often in these situations. And it’s great to have multiple family members in on this call is you, you get conflicting opinions between family members and often you get, what I would like to see for me. So some people feel icky about perhaps a craniotomy and go, no, no, we can’t take our mom’s
head off, know, or we have to shave her head, you know, like there’s a whole bunch of other things that come into it. People make it about themselves. And it’s not purposeful. Like they don’t do it to be nasty mean. It’s just a difficult situation to deal with. They’ve never had to deal with it before. And they’re putting, they’re trying to put themselves into the shoes of that person. And they’re not considering the nature, serious nature of the situation they find themselves in. Perhaps they’re just considering like,
superficially what it might mean if I have to interact with somebody who’s missing part of this goal. You know, so that’s very interesting. How did you guys become only was only because of proximity and who got the phone call first and who was with mom that you guys became the people who managed this with Bill or like how does
Paul (18:43)
Mm-hmm.
BIll Gasiamis (19:06)
How does that happen? How does in a big family, you two guys become the main people to drive this forward with Bill?
Kathy Cunningham, & Sean, son (19:13)
Well, so one one thing that I would suggest just generally, I’m not sure how it works in Australia, but here in Massachusetts, she didn’t have what’s known as a healthcare proxy on file. So there was no officially declared by her, like this is the person I want to be in charge of making the decisions about plans of treatment. which
Thankfully, though, the fact that the, you know, my brother and I and Bill were all on board on the same we were all in agreement, so there was no ambiguity or conflict there from the any sort of disagreement. And I think it defaults to the spouse in that case, but it was a challenge too, because he was in California at the time. So then he’s flying back, and but
one of those this isn’t directly related to that question, but on the topic of the considering like the impacts of like, it’s icky, like whatnot. But one of the concerns I had, and that I was really grateful to be able to ask the surgeon ahead of time as part of the because it wasn’t like an urgent, like we need to make this call right right now.
I was able, or we were all able to talk to the surgeon ahead of time. And one of the concerns I had was understanding what is the potential changes on the other side, you know, like is she gonna be alive, but you know, it’s the brain. The brain is very important. And the surgeon was very reassured reassuring given that the location of the bleed that the
effects would be mostly with language and potentially some changes in impulse control and regulation, emotional regulation. But I’m incredibly grateful that you know on the other side it still feels like it’s my mom. and
BIll Gasiamis (21:31)
Got it.
Reflections on Control and IndependenceI love that you had time because often in these situations people don’t have time. So being able to address those concerns, it’s still valid even though I sort of suggested that it might be a bit strange that somebody is concerned about how their mom’s hair might look. But it’s still valid. And if a surgeon has the opportunity to ease your concerns, then that makes the decision much easier. I like that. Now, my spidey sensors picked up
something that I need to go towards, which was Kathy’s response when you mentioned about impulse control. Tell me a little bit about that.
Kathy Cunningham, & Sean, son (22:13)
Yeah. so i I wasn’t aware when when I finally became conscious, I realized I was slowly coming to understand that I had had some emergency, but I didn’t really understand the extent of it.
I didn’t understand that I had a s a a a hemorrhagic stroke. I didn’t even understand w what that meant. Like I just r realized I couldn’t move my right hand, I couldn’t right move my right side, but it was and then I was also had the difficulty in speaking, communicating my needs. And so I
I’m having difficulty even trying to phrase it. Yeah. but Sean noticed that I I would because I I I just don’t want to be able to say anyway, so I I But like as as an example or very early on.
the nurses and caretakers at the at the recovery, the what is it called? Recovery room. No, but the Spauldings rehab center. Yeah. We’re you know very clear on the limitations that she had and the instructions about like, you know, you cannot get out of bed. You need to remain in bed. If you need something, press the call button and wait for somebody to come help you.
BIll Gasiamis (23:40)
Rehabilitation.
Kathy Cunningham, & Sean, son (23:57)
And you were recounting having gotten yourself stuck in in the wheelchair. She had managed to because I what did you even want to get? I I would sit in bed and I would just repeatedly go like view the the clutter on the couch. I could think rationally and but I couldn’t communicate that. And I I was seeing I just over and over I’d say, well it’s easy enough that we could just get things organized.
and move this here and move that there and I was when I went to do it myself they helped me in the wheelchair and w just because I I I couldn’t navigate the space myself and even even just one sided wheeling th that it was I got stuck that I couldn’t you know stuck in in in a place b you you were
Paul (24:56)
You’ve managed to wheel yourself into a corner effectively and you’re like unable to navigate out of it.
Kathy Cunningham, & Sean, son (24:59)
Yeah. Yes. When
like they had they helped you into the wheelchair and said they said like just stay here. Yeah, well I I was just trying to sneak, you know, because of my lack of impulse control that I I just wanted to do it and and not let them find me out it because I felt like i it’s something I can just do and and I didn’t realize how quickly I I got myself stuck.
BIll Gasiamis (25:27)
and
your intention was to tidy up the couch or clean up, what was it?
Kathy Cunningham, & Sean, son (25:30)
Yes,
because it was driving me crazy. because I I I needed to have I need to have my my environment to be neat and I couldn’t hand I couldn’t stand the the how how n unsettled I I was feeling with the exterior. But
BIll Gasiamis (25:49)
It’s probably a little bit of like control, taking a little bit of control back. There’s so much you’ve given over to the hospital staff, the nurses, the rehabilitation. Everything gets given over and what you want is a little bit of control. Now I’m not a clean guy, as in like, I’m not doing the cleaning or the rearranging or the redecorating. But one of the things that I took control of was what I ate and where I ate it.
Kathy Cunningham, & Sean, son (25:53)
Well
BIll Gasiamis (26:17)
Let me tell you, if things were out of line, I didn’t eat that particular food. didn’t eat it. know, mom and dad had to bring me food. What else was I in control of? Like little things like that. You know, I used to kind of make the rules about how my rehabilitation would go and I’d have to negotiate. Cause if I wasn’t capable of doing something, they would have to convince me you’re not capable yet. But they, they realized they had a negotiator, you know, on their hands.
So that we needed to go through this whole process for me to get over the line with what they intended the day to be like. So I get it. It’s a little bit of control, a little bit of also being, yeah, autonomy, being independent again. And even if you have to wheel yourself with one arm, you have to do it, like whatever. I was in hospital, I think maybe a day or two after surgery before I went to rehab.
Paul (26:54)
you
autonomy.
BIll Gasiamis (27:15)
and they had given me laxatives because I hadn’t been to the toilet like they’d like you to go after surgery. And eventually they’ve worked and I was pressing the button and I couldn’t walk. My left side was completely offline and I couldn’t walk and I was pressing the button for the nurses to come. They wouldn’t come. And then it was like, OK, I am not letting these people clean up after me in my bed. I’m going to get to the toilet and I’m going to.
drag myself off the bed, pretty much throw myself into the wheelchair and then find a way to wheel through the door, which was closed. It was a sliding door of the toilet. And then somehow I was going to get up on the toilet, which was way higher than normal toilets for some reason. And I didn’t know how I was gonna do it, but I was gonna do it. And then I got caught halfway in the middle of the doorway. Thank God they got there on time.
Paul (27:50)
Mm.
Facing Mortality: A Son’s PerspectiveYou
BIll Gasiamis (28:12)
because then they helped me on the toilet, but then they refused to get out of the toilet and they wanted to be in there while I had to go and do my thing. And then I had to negotiate with them to get them out and it took some time. What seemed like an eternity, but eventually I got to have the toilet to myself and I had the nurse on the other side of the closed door waiting for me in case I needed help. So like I get it totally utterly get it, but from a
Paul (28:12)
Mm.
Yeah.
Yeah.
BIll Gasiamis (28:42)
family perspective, the kids are probably thinking, just do what they say, don’t do anything silly because…
Kathy Cunningham, & Sean, son (28:50)
Yeah, well don’t
jeopardize your your care. Like they’re telling you. But baseline, I I’m in the caregiver role that’s most comfortable for me. And so one of the things I I I’m I’m working on writing a book right now. I I and I was coming from the focus of being it being a positive, you know, like your title of your book is what made the
BIll Gasiamis (28:53)
You’re unwell! Yeah.
Paul (28:53)
You have no idea.
Kathy Cunningham, & Sean, son (29:20)
the stroke is the unexpected yeah. but I realized that I want to try to come from the different slant. Pride met my match in stroke because it was not a comfortable position for me to be in as the care needer, you know, and I had to quickly adjust
BIll Gasiamis (29:20)
the unexpected way that a stroke became the best thing that happened.
Hmm.
Mmm.
Kathy Cunningham, & Sean, son (29:43)
and go through a process of of leaning into surrendering to the fact that and I see that this was a necessary thing and I’m I’m I wanna just make sure that I make note of the fact that I see the positive benefits of the stroke. It it i I wouldn’t have made the decision to leave work. I I was I I they brought up the decision for me to retire and
And I had to accept it and but I would not have been able to make the I had was wor at Thayer Academy for twenty five years and and and even working long hours through the pandemic, et cetera. but I realized my nature by nature I I’m more comfortable with control and so
Paul (30:37)
Yeah, your default nature has always been like kind of that strong independent personality and prided yourself on being able to do things yourself and not necessarily rely or have to rely on other people even if you did get help at times. that was both a benefit in your recovery but also a source of growth and challenge for you in accepting help.
BIll Gasiamis (31:06)
Also, Paul, what’s it like to be on the other side as as a son and
I’m assuming having the first experience of getting a phone call that your mother is at risk of not being around, like, and things are pretty dire. How do you kind of, like, how do you receive that type of news and then deal with it later on, learning perhaps for the first time that your mom is not immortal?
Paul (31:40)
Yeah, yeah, it definitely, you know, definitely takes time really for that to to process that and accept that, you know, you’re you kind of get slapped in the face when you get a call like that of, you know, holy smokes, what’s going on? And, you know, so I’m so grateful that that Sean was there to deal with the initial, you know, challenges and.
And so there was less immediate stress of having to feel like I needed to jump in and control something or, you know, do something. I could just ask the question of like, okay, how do I help? Because obviously we’re dealing with something very emergent. And then, you know, those, those handful of days, those first days of just watching your, your mother’s health and
and alertness and whatnot decline slowly. was very hard, just all that uncertainty and trying to process what is a future that looks like without my mother is obviously very.
very hard to think about, let alone accept. And obviously now at this stage, even getting out of the surgery decision and then navigating the, where does she go to rehab? And the idea of transitioning from rehab to somewhere else or to home.
It’s, I don’t know, it’s, it’s, it is a hard thing to accept. but certainly obviously life changing for her and life changing for me and for Sean in terms of our relationship with her too is, is not the same as what it was, you know, growing up and, seeing her, your mom as this like strong, you know, independent person who is trying to
instill those things into us as kids and now seeing the fragility of life and engaging with her on a deeper level now, right, of what life has to offer and what it means to be alive and have a family and engage with the broader community and stuff.
BIll Gasiamis (34:16)
Hmm. My parents immigrated from Greece to Australia in the sixties and I, and I never lived with my grandparents. Never met any of my grandparents unless it wasn’t a family trip back once or twice in, in my lifetime. Maybe I met my grandparents, three of my grandparents I met twice and
And I never got to witness the generational thing that happens, know, one generation helps the other generation, et cetera. So, you know, my parents, as far as I know, have always been up and about. They’ve always been strong and steady and they’ve always, you know, steered the ship. And then they’re starting to do that old switcheroo, you know, which is now you need care from me. What are you talking about? What do you mean you need care from me? They’re in their eighties and they’re pretty…
Paul (35:09)
Yeah.
Navigating Family Dynamics During CrisisBIll Gasiamis (35:14)
up and about there quite well, but they’ve had a few medical issues as people do as they sort of become octogenarians. And then it’s like, hmm, okay. And then I put myself in that sort of role. And so there’s my brother, but then they also had to look after me, their son who ended up in hospital with three brain hemorrhages, brain surgery, had to learn how to walk again. And I did that to them as well. And it’s kind of interesting to
Paul (35:21)
Hmm.
BIll Gasiamis (35:44)
have that experience from a patient perspective and how I, even though I recognized I was mortal, even though I went through all the emotional and mental and physical trauma, I was still a little bit less concerned about me than my parents would have been. But I’m very concerned about my parents way more than I was about myself. And
the dynamics of how relationships change are very interesting. My dad, when I got diagnosed on the first time, he’s a very soft, he’s a big giant bloke, but he’s really soft and mushy, There’s nothing. Yeah. And he collapsed at home the day he was told, your son’s in hospital and we need to go to the hospital.
Kathy Cunningham, & Sean, son (36:33)
Any America. Big old time.
BIll Gasiamis (36:44)
And he came to hospital in an ambulance, the same hospital I was in. And when my mum came to visit me, I said to her, where’s dad? And she said, well, he’s in emergency, he collapsed. And I had to go down with a brain hemorrhage to see my dad in emergency and get him like, wait, what are you doing? What’s going on here? So there’s a whole bunch of crazy things that happened that kind of make me feel like, my dad is actually a facade. All of this stuff.
that is always done has always been a facade and is put on a brave face and he’s just pushed on. And then I think about my brother being on the phone and almost badgering my wife to get information updates because he wasn’t the decision maker and he doesn’t, he lives near us, but it doesn’t live next to us and trying to get updates and information and all that kind of stuff. And then my wife kind of having to manage her experience with what’s happening. And then my brother’s experience from afar.
It’s such a weird and crazy dynamic that we never had any of that happen. Before we go to Sean, Paul, I just want to ask you, what’s it like to be a little bit further away than where Sean is, especially in the early days when, you know, things are still a little bit unstable and, you know, we’re still concerned about mom’s health.
Paul (37:53)
Yeah.
Hmm.
Yeah. Yeah, that it was very hard to, as I’ve got learned in both genetically and nurture for my mom to be, you know, independent and, wanting to, to give and care for others, not being able to be there the same way that Sean was to care for and help and advocate for her in that immediate time of need was very hard.
hard to accept, hard to lean into and be direct or just honest with myself and honest with Sean about like, hey, I can’t help X, and Z way, or I can’t be there at that time. That was just really frustrating on a personal level. But we had to rise to the occasion and
you know, talk with Sean, talk with Bill and the three of us, you know, try to figure out what made sense. Cause I, you know, I still, lived like, you know, 45, 15 minutes away. So it wasn’t like, it was just easy to just pop over to mom’s house or whatever. And so I had to make a choice of, I, you know, stay at my mom’s house? Cause I’m going to go into the hospital with Sean the next day, or do I have to go home? How do I balance work? Like it just,
It was very hard.
BIll Gasiamis (39:35)
Life goes on, right? Life doesn’t go to pause when something ridiculously sort of unhealthy happens to somebody. It continues and you have to actually go, I actually can’t go there. I have to attend to this other matter that is related to my life that is not maybe the most important thing in the world, but it’s important in the scheme of things and I’ve got to do it. Work is one of them. Attending to your own family is another thing. Sean.
Paul (39:38)
Yeah.
BIll Gasiamis (40:02)
On the other side of that, what’s it like being the closest to your mom with Bill? So perhaps you guys were able to support each other as well, but then to have to deal with all of the challenges that came when mom came home.
Kathy Cunningham, & Sean, son (40:19)
earlier. the doctors and care caregivers overall were so amazing and so professional to a f to a point where it was kind of almost frustrating because they were so factual and calm. It was it was like I I don’t know how how s how serious is this? I like I wanna see something, I want some feedback to like, you know.
BIll Gasiamis (40:42)
You wanna see them
losing their shit?
Kathy Cunningham, & Sean, son (40:45)
Yeah. They’re like talking about, you know, brain surgery like it’s like not like matter of fact, but that it’s like, you know, they’re very calmly explaining, you know, which are Yeah. Which for a neurosurgeon maybe, you know.
Paul (40:55)
It’s like reading the morning paper with a cup of coffee. just I’ll do brain servers. It’s fine.
BIll Gasiamis (41:02)
Drug survivors sometimes say, you know you hear that saying in life, it’s not brain surgery, but now it is. it is brain surgery. Okay, it is serious. Like I know what you mean.
Kathy Cunningham, & Sean, son (41:09)
Yeah. Sometimes
Paul (41:10)
Yeah, now it is.
Kathy Cunningham, & Sean, son (41:19)
Yeah. the sorry. Okay, no go ahead. in terms of being closer in the day to day assistance of my mom’s care, it was I’m proud of the fact that like Paul and I both stepped up to the plate and in a way prove you wrong.
Yeah, I used to say all the time, like, Who’s gonna take care of me? My husband is thirteen years older than me, and then my two sons, you know, I don’t have any daughters and and I thought, Who’s gonna take care of me? And they it was just such a beautiful thing that they sh proved me wrong and they they came through with so I’m such so grateful and loving and caring and kind for they were for to me and
patient. so it is it is just I have a whole new perspective on what life what really matters in life and and I realized really this you know the phrase no don’t sweat the small stuff and it’s all small stuff after all. And and such an appreciation for i it just worked out I I have Sean is not working currently but I had such
physical needs to go to many doctors appointment after the stroke and I needed depended on him to not only drive but to actually help me into the doctor’s offices and and I was so grateful that it it that he was available to help me with that. So But
Paul (43:05)
Yeah. It went from,
it went from the two of you being able to cover things for the house. Cause you know, Bill is unable to drive, uh, to then just Sean being, you know, available to help both mom and bill get to appointments and do things day to day errands or whatever. I think that transition though, uh, I thought was most interesting. talked about mom, kind of independence and stubbornness in a way, you know,
Kathy Cunningham, & Sean, son (43:16)
Yeah.
Paul (43:34)
early days where, you know, mom, you don’t remember those those details, but, you know, Sean and Bill and I were talking about your recovery progression and fortunate for you to go to Spalding because there was kind of uncertainty about where the hospital is going to just say, you know, she’s out of the acute phase time to discharge somewhere. So we’re fortunate for you to go to Spalding. And then the question was, you know, are Sean and Bill prepared to help you at home? And the two of them are feeling uneasy about like.
I’m not really sure. And we wanted to talk about putting you into like a like a step down recovery space for for yes. So you rehab and and you know, in that period of time, you became much more conscious and alert and able to understand and comprehend verbal, even if you were still working through your own speaking and communication that you eventually put your foot down and like,
Kathy Cunningham, & Sean, son (44:06)
Well part
Sell a few after the recovery. Yeah.
Paul (44:33)
I’m not sleeping in somebody else’s bed any longer. I want to go home. And that was the time in which like Sean, you know, having to navigate that transition and be a primary source, I think was a, you know, a big challenge initially, but obviously Sean, you know, stepped up, figured it out.
Kathy Cunningham, & Sean, son (44:53)
Well
Understanding the Impact of Stroke on Relationshipsno, I I think we all we all Paul and Bill and I like we all did what we were able to do and with the reality of you know Paul’s working he lives elsewhere he has his own family like but he’s able to handle certain aspects as he can and
It it also like the when you mentioned Bill the the flip the flipping back and forth of the caregiver caretaker that the
It it it’s been a weird like realization of, you know, that my mom is a person. Like I I don’t even know how to describe it, but that she’s not just like the this parent, you know
BIll Gasiamis (45:46)
I know exactly what you mean. Yeah. Yeah. She,
she’s a, she’s a vulnerable human being who, you know, has, has sort of stopped being the role that she was. And now she’s being this other role and you’ve got to change the role that you were being. And now you’re going to be this role. And it’s a challenging thing to, navigate. saw that in my in-laws, particularly my father-in-law who passed away a few years ago.
who became totally dependent on his daughters to look after him because he was in a wheelchair and he couldn’t use his limbs firstly, but also because then his decision-making was not in his best interests. So that was the hardest part because they had to go against his perceived wishes and then argue with him about.
the decisions he was making, because they wanted him to be well and healthy and have a good last few years. Whereas some of his decisions were made out of frustration rather than what’s best for him. He was in his mid to late eighties and he had been disabled for many, many years and he had a lot of issues and he was over it. But the girls weren’t over it, over him.
Paul (47:11)
Mm-hmm.
BIll Gasiamis (47:12)
You know what I mean? They still wanted to make sure he was going to be around and okay, so that they can help him and interact with him. so I know what you’re saying, Sean, it’s like, how do you know, how do you in a really difficult time, you’re also navigating the complexity of relationship shifting and changing. And it’s been thrust upon you. You don’t have time to ease into it and go, you know, I’m going to now,
do one errand for my mom for the next one year and then I’m going to be doing two errands for my mom. And you’re living with another stroke survivor. Bill is another stroke survivor.
As a spouse, Cathy, becoming a stroke survivor, did you then kind of have this different understanding of what it was like for Bill to be in the hot seat
Kathy Cunningham, & Sean, son (48:05)
Yeah. I
I didn’t actually because he didn’t have any visual or physical d deficits, I he only has a a visual he lost his lost his left peripheral field of vision and and therefore it impaired his ability to drive and he just made the decision that he couldn’t drive safely. And so because I didn’t
see his deficits. I didn’t really give credence to it. Like I I I I realized how insensitive I was to his you know struggles and shifting in his capacities. but I I d my siblings called me Lazarus because they thought I was dying and
that that I I it had such a miraculous recovery from the stroke and I had many, many complications, including a D V T and a a pulmonary embolus which is a blood clot and it’s treated differently than you’re concerned for bleeding and you have to give anticoagulation for a blood clot. And so I I had that when I was in at Spaulding.
And then I had a frozen shoulder because of not being able to move my right side and and then had developed four months later seizures which Sean witnessed and when when I had a seizure. Again, Bill wasn’t home because he was visiting his daughters in California. but so
i it it the the cumulative of effect of all those things that multiplied my medical needs and and and just added to the fact that I was clearly a a miracle r recovery. but anyways, I I forget where I was gonna go with that.
BIll Gasiamis (50:16)
No,
you went well. You did really well with that. Thank you. and I was just marveling modern medicine, like its ability to deal with all of that complication, at the same time is just phenomenal. And I am in awe of all the help and the, professionalism that I received as well in all the years that I needed the, the medical system. I remember my, one of my nurses who was in the,
Paul (50:37)
you
BIll Gasiamis (50:47)
who was in my recovery area after the surgery. So I think he was looking after me in the evening. He was so on top of everything and he noticed that my temperature was really high and he was just scrambling of that entire. I get emotional thinking about it the entire night to make sure that my temperature didn’t go too high and it didn’t become further unwell. He notified everybody. He got ice packs out. He undressed me. He dressed me.
Paul (51:09)
Mm.
BIll Gasiamis (51:16)
He did all these things. I just, you know, it’s like, get, kind of get being that committed to somebody else, but then to experience it, it’s just a completely different thing. So I love that you guys have been able to get through all of the challenges that you’ve got through so far and that you’ve joined me on the podcast as a family that is brilliant.
Paul (51:31)
Mm.
you
Kathy Cunningham, & Sean, son (51:45)
Mm.
BIll Gasiamis (51:47)
because very rarely do we get to put out the broader picture of what stroke does to people. And I know that ill health, another, know, take stroke out and put in heart attack or take, in cancer or whatever. Like it’s the same impact. It’s not just the one individual that gets impacted by everybody around that individual gets impacted by it. And I think as a society, we’re unskilled.
We’re unskilled these days because we don’t live in villages to have, um, to be able to manage that because we don’t see the previous generation. Like I missed my grandparents. We don’t see the previous generation caring for their gen, their previous generation to them. And we, we, we, we missed the learning. We miss what it’s like. And then it’s a big deal. It happens all of a sudden. It’s like, Oh, old people get unwell and then they die. What do mean? Like I never saw that before.
Paul (52:26)
this.
Finding a New Normal After RecoveryKathy Cunningham, & Sean, son (52:45)
No, it it I lived around there
and and realized that what a wonderful gift for my boys when they b when boys that we as a subunit, the me and the two boys lived with my mother and because she has several, I mean a children, that there was plenty of people in and out of her house. But I’m just so grateful for them having had the experience of living with their nanny.
and and having witnessed that and had that experience of just seeing how families can function in the larger aspect. But but I said to Sean when we were preparing for this meeting that the gift of large families is that there’s always such large numbers like 20, 30 people that had taken over the waiting room, you know.
And there was such a just a a a comfortable pool of people to keep the visitors coming and and encouraging in encouraging me, motivation and such, and but without taxing any individual too too much. Like it it it it it is I’m sure Paul and Sean felt the the lightness of of realizing that they weren’t alone with
the the the work of having to be my sole supporter and and i even Bill i it is my husband. so anyways th they can speak to that w when I had visitors that Sean gets emotional when seeing the
Paul (54:31)
you
Yeah.
Kathy Cunningham, & Sean, son (54:39)
the the excitement on my face with a familiar cousin, you know, that I I was just clearly when I was still wasn’t able to speak, but he could see the joy in my face and and he recalls that tenderly, you know. So
BIll Gasiamis (54:54)
Yeah, that’s the relief, you know, that you that you still have a recognition of things, people, etc. And yeah, it’s a real moment for a family member to go, okay, that part’s still there. I see that.
Paul (54:59)
Yeah.
Kathy Cunningham, & Sean, son (55:07)
Yeah. Yeah. It it was incredibly
Paul (55:07)
Yeah.
Kathy Cunningham, & Sean, son (55:09)
reassuring. She hadn’t spoken a single word yet at that point, since the stroke. But to see her immediately smile, well, half smile as she could at the time, when she saw, you know, her cousin walk in the door was just it it was reassuring and it was reassuring that like clearly, you know.
Even if she can’t talk, even if she’s having trouble physically and communicating like that, it she’s still in there, like, okay, you know, it’s gonna take work to try to figure out how to, you know, communicate and and collaborate with it, but it just
Paul (56:00)
I do totally, totally recognize and agree with that observation you shared, right? About the idea of, you know, with any, any event that’s significant, like a health, you know, health scare, health event where somebody, an individual is impacted, but obviously then by extension, the immediate family and any spouses and, uh, you know, it kind of has a ripple effect outward.
for everyone that it impacts. in today’s day and age, we’re partially forced through COVID and how we all adapted to more remote interactions, right? We talking to somebody on the other side of the world, right, it is a beautiful thing. It’s really cool to be able to exchange information and talk, but it is also not the same as having kind of a local community that you physically interact with.
when it comes to managing just the immediate, you know, fortunate to have, you know, my wife to be able to take care of things here, but having neighbors that we have gotten to know and gotten close with that we can also lean on them for myself and my wife to be able to say, Hey, we’re going to be out of the house. Can you take care of the dog? or, know, people stepping in to make a meal or something, just to, to alleviate that sort of burden on the rest of the family.
It’s obviously not, you we’re not the ones experiencing the medical hardship, but it does, it does help with, you know, mom’s recovery when we also are being cared for by that, that larger community.
Kathy Cunningham, & Sean, son (57:40)
Yeah.
The importance of like the carers also being cared for and taking care of themselves too. One thing very early on that I appreciated about the hospital is that you were not allowed to stay overnight. It was like even though it’s the ICU, you know, and Paul and I and Bill would have loved like would have just parked ourselves there and slept on the couch, like the the waiting lobby. No, they said
10 p.m. or 9 p.m., like you have to go home. Like, you can’t be here overnight. And it was like, you know, the recovery, physical recovery of the person having to do things that they don’t really want to do, but is good for them. Like it we couldn’t have helped nearly as much if we weren’t sleeping and eating and
Taking care of ourselves because you can’t help other people well if you’re not taking care of yourself to give yourself a baseline.
BIll Gasiamis (58:49)
It’s such a difficult thing, right? So my dad, he collapsed and then he needed to be looked after and they needed to get him right. then, you know, he had a high blood pressure episode or he had a fainting episode, you know, he couldn’t deal with the news that he heard. And that’s basically what happened. My wife, when I had brain surgery, also the week before we buried her mum and she
You can imagine I was having kind of mini seizures and different episodes before the surgery. And a week or two before the surgery, had a brain hemorrhage. And then a week or two, a week and a half after that brain hemorrhage, her mom died, we buried her. And then I had to go to surgery. So you can imagine the state of my wife trying to keep it together.
while dealing with all of the things that she has to deal with. So when it came to the surgery, it was a really hot day and she had been out and about on a walk, trying to get out of the hospital, waiting for news. And I think it was the day after when she came to visit me, she had gone on a walk and she hadn’t taken any water with her and she hadn’t been eating properly. And then I’m in bed and my wife sitting next to me,
And she’s fainting off of the chair. And I, and I had to call the nurse and say, can you take my wife to emergency, get a doctor to look after her? There’s something wrong with my wife. So I can’t walk. I’ve got a scar on my head and my wife’s fainting at the end of my bed. And, and they take her, they wheel her down, they get her into emergency, they admit her and they.
Paul (1:00:32)
Wow.
BIll Gasiamis (1:00:44)
I put her in one of the daybeds or whatever it’s called. And I turn up down there, I get one of the nurses to wheel me down and she’s connected to all the machines, a drip and everything. And I’m like, what the hell is going on? And then the surgeon, one of the surgeons who was on my, on the team that did the operation on me came past. And you know, when people just walk past and then they doubled, they do one of those. Yeah.
Paul (1:00:58)
you
Kathy Cunningham, & Sean, son (1:01:11)
Yeah, like wait, what what do you
BIll Gasiamis (1:01:14)
He almost lost his head in that double take, because he saw me in the wheelchair at the side of my wife’s bed with her all connected. And it’s exactly that thing. It’s that in the time of crisis, entire energy is going into, I want to make sure my husband’s well. I can’t go through what I went through with my mom a week after.
Paul (1:01:22)
my gosh.
Kathy Cunningham, & Sean, son (1:01:43)
Right.
Yeah.
BIll Gasiamis (1:01:44)
with my husband, right? And she just forgets about everything else. And then she becomes unwell. And now my family potentially has to now think about another person in the family who’s unwell within that period of time, like, it’s not on that should not be happening. And, and it’s one of the biggest points I tried to make with my sisters, sorry, with my sister in laws and my wife when they were trying to care for their dad.
because the three of them are exactly the same. And I was saying to them, guys, your dad is unwell. We cannot have four people unwell at the same time in the family. You all need to look after yourselves. But caregivers are neglected by society in general in that underappreciated. They’re missed in the whole scheme of things because clearly
Paul (1:02:22)
Ha
Kathy Cunningham, & Sean, son (1:02:32)
Underappreciated
BIll Gasiamis (1:02:40)
At that time, they’re not the injured person, the unwell person. They might become that later, but they’re not at that time. So they get overlooked.
Kathy Cunningham, & Sean, son (1:02:50)
I want to give a shout out to Nadia Paul’s wife who solved the problem of communication, streamlining communication. And she had start a caring village, which is an online p portal for communicating about patients. And and it was just tr truly a gift that for for
BIll Gasiamis (1:02:50)
Yeah.
Paul (1:03:08)
platform.
Kathy Cunningham, & Sean, son (1:03:17)
probably for best for pawn Paul and Sean, that it would be communicating daily updates and photos and videos and such that people could individually log in and get their own update, you know, at their own convenient time. So they weren’t having to be taxed, also trying to repeat the same story over and over and over again. So that helped.
BIll Gasiamis (1:03:42)
That’s very important. how’s, as we come to the end and wrap up, how has sort of things settled now, Paul, for you?
Reflections on Healing and Future AspirationsPaul (1:03:52)
Yeah, yeah, things, I mean, right with with my mom’s, you know, recovery back to, you know, her independence, being able to drive and, and obviously, it was a stressful time of navigating of, you know, is she going to go back to work or not? That was a that was a hard kind of period of, of will she doesn’t make sense, you know, what’s the right decision and, and, you know, so we’ve we’ve fell into a new
a new normal, new kind of baseline of back to work. I’m not worried about getting a phone call at two in the morning again, you know, because there’s always that kind of lingering anxiety of what’s going to happen next coming out of that kind of medical crisis. so, you know, we have our new way of kind of managing things like I can help out.
you know, even though I live a little bit away, we’re pretty regular making sure we’re doing video calls and, catching up and, and, you know, providing any additional support to mom and Sean and Bill that I can, without, you know, totally jeopardizing and throwing my life into this array, right. Of, my responsibilities. So, it’s, it is definitely a relief to be back to a, what feels like a normal,
kind of cadence of life and relationship with my mom and my brother and friends and family. So it’s definitely a relief.
BIll Gasiamis (1:05:27)
And Sean, what’s it like for you now?
Kathy Cunningham, & Sean, son (1:05:31)
it has definitely it’s not totally gone away, the like anxiety about, you know, if I if I sent like give her a phone call and she doesn’t pick up and doesn’t pick up on repeated ones, my mind still does go to like, gosh, is is she okay? Like, because of the, you know, numerous instances of that with the seeing her have the seizure too and
whatnot. But with time it’s gotten much less severe. That anxiety crops up much less and less. And it’s been one a big challenge for me is trying to figure out moving forward for myself what the
For the past several years it had been like my purpose was to help her recover. And as she’s, you know, regained so much, you know, she’s not back. It it it’s been tough to figure out now that we’re well past the acute stage, like
Where does the flip-flopping go from here? Not the flip-flopping, but the yeah.
BIll Gasiamis (1:06:52)
Yeah. Switcheroo.
Yeah. Back to your purpose, meaning you’re doing you. Yeah. That’s a really good thing to ponder and work out over the next few weeks, months, years. Definitely you need to do that. That’s important that your identity is not, sort of commingled with somebody else’s identity because of a role that you played once that you may have to play again, but
Kathy Cunningham, & Sean, son (1:07:00)
Yeah.
BIll Gasiamis (1:07:21)
temporary role that you played once. Now you’ve got to get back to you for sure. And Cathy, where are you with the book? When can we expect it?
Kathy Cunningham, & Sean, son (1:07:37)
so I’m about ninety percent physically recovered. and cognitively and I I find that my language difficulties is and my energy level is I still need a three hour nap midday each day. and I met with the neurologist to try to get him to agree to
For me to reduce my Kepra, which is an anti-seizure med that I have determined is probably contributing to my fatigue. But so I I wanna give myself a deadline. You know, I wanna say six to twelve months from this day, you know, that I would have that that book completed. And and so just what I wanna leave it as that the
Potential of returning to work was such a an important motivation for me that I really pushed forward to that. I had to have neuropsychaval. I it it did have three three ones, and I finally passed the third one. and I thought I would be returning to work. but I I have come to accept that that it wasn’t the time for me to return to that
pretty stressful even even it takes me longer to get ready in the morning. but but I get easily overloaded and I have seen that though I had less hard lessons to learn and there were t certain times that I really didn’t like what I was going through, but but I tried to always choose gratitude.
that I s would start each day with with you know the reflecting on positive things that Sean would be available and that that I was feeling good in the certain ways that I was feeling. And and it it really set the tone for the day that I would focus on the positive things that was in my life.
But it it’s been a journey and I I’m happy to say that I’m I I’m almost there. But but I don’t I don’t see it as you know like a linear not a linear process, but but that it’s life is a journey and there’s lessons to learn.
BIll Gasiamis (1:10:21)
Well, everybody, thank you so much for joining me on the podcast. It’s been a pleasure getting to know you and hear your stories and your different version of how you experienced Kathy’s stroke. And I wish you all well in your journey from here on.
Kathy Cunningham, & Sean, son (1:10:38)
Thank you. Thank you very much for having us.
Paul (1:10:39)
Thank you, Bill.
BIll Gasiamis (1:10:41)
That was Kathy Cunningham, Sean Monahan, and Paul Monahan. And a genuine thank you to all three for joining me on the podcast today. What stays with me from this conversation is the idea that accepting help is not a passive thing. For Kathy, someone whose entire professional identity was built on giving care, learning to receive it was one of the hardest parts of recovery.
Sean and Paul also showed that caregiving, real caregiving, asks something of you that doesn’t go away when the crisis does. If this podcast brought something up for you, share it with someone who needs to hear it.
You don’t have to leave a review, just send it to one person. That’s the thing that keeps this show in front of the people who need it most. My book, The Unexpected Way That a Stroke Became, the best thing that happened, is at recoveryafterstroke.com/book. If you’re in the middle of your own recovery or helping someone through theirs, it was written for you. And if this show has helped you, you can support it financially at Patreon.
dot com slash recovery after stroke. I’m Bill Gessiamas. Thank you for listening to Recovery After Stroke. I’ll see you in the next episode.
The post The Nurse Who Had to Learn to Accept Care | Kathy Cunningham with Sean & Paul Monahan appeared first on Recovery After Stroke.
EWOT for Stroke Recovery: The Affordable Alternative to Hyperbaric Oxygen TherapyBrad Pitzele did not set out to become an oxygen therapy equipment maker. He set out to survive. After years of battling significant health challenges, conventional medicine had given him answers that kept failing him. He tried around 200 treatments. Some helped. Many did not. Then he found EWOT Exercise With Oxygen Therapy, and something finally shifted.
Brad’s journey is not the same as a stroke. But what he discovered about oxygen, inflammation, and cellular energy maps directly onto one of the most stubborn obstacles stroke survivors face: the feeling that the brain has gone offline, that the body is running on empty, and that the path back is either impossibly expensive or simply does not exist.
In Episode 407 of the Recovery After Stroke podcast, Brad shares what EWOT is, why it works, and why he now makes affordable EWOT systems through his company, One Thousand Roads, specifically so survivors do not have to remortgage their homes to access oxygen-driven recovery.
What Is EWOT?EWOT stands for Exercise With Oxygen Therapy. The concept is straightforward: you breathe high-concentration oxygen through a mask while exercising even lightly, and that combination pushes oxygen into parts of the body that normal breathing cannot reliably reach.
Most people assume oxygen therapy means a hyperbaric chamber: a pressurized tube, a clinic, a course of treatments costing tens of thousands of dollars. Hyperbaric oxygen therapy (HBOT) is effective. Brad describes it as “a heroic treatment.” But it is also inaccessible for most survivors, financially and logistically.
EWOT operates on a related principle without the chamber. The key mechanism is not about oxygenating red blood cells; they are already carrying close to their maximum load under normal breathing. The target is the blood plasma. Plasma does not carry oxygen efficiently under resting conditions, but during exercise, even light exercise, blood pressure and circulation increase enough to force dissolved oxygen into the plasma. That plasma can then reach the micro-capillaries, the tiny vessels that feed tissues deep in the body, including areas of the brain that become inflamed and oxygen-starved after a stroke.
The Post-Stroke Energy ProblemOne of the most commonly reported and least-explained symptoms after stroke is fatigue that does not go away, no matter how much a survivor rests. Most survivors are told that is just part of it. Brad’s framework centres on mitochondrial dysfunction.
Mitochondria are the energy-producing structures inside cells. After stroke, the cells in and around the affected area are often not dead; they are in a kind of low-power state. Brad describes it as a “brownout”: the lights are on, but dimly. The mitochondria are not producing energy at full capacity, and one significant reason for that is insufficient oxygen supply to the tissue.
“The cells that are offline after a stroke are not all dead. Some of them are just starving. Oxygen is part of what feeds them back.” — Brad Pitzele, Episode 407
When EWOT increases plasma oxygen during exercise, it can reach those inflamed, under-oxygenated micro-capillaries that larger vessels cannot access. The result, for some survivors, is a gradual improvement in energy, cognition, and physical capacity, not because the therapy is miraculous, but because it addresses a specific physiological deficit that conventional post-stroke care often does not target.
EWOT vs. Hyperbaric: What’s the Real Difference?The honest answer is that EWOT and hyperbaric oxygen therapy are not equivalent. HBOT delivers oxygen under pressure, which drives it into tissue more forcefully. For certain conditions, particularly in acute or severe cases, hyperbaric oxygen has a stronger evidence base.
But for many stroke survivors in the subacute or chronic phase of recovery, access is the defining variable, not theoretical ceiling. A home-based hyperbaric unit costs $50,000 to $75,000. A clinical course can run to $60,000 or more. EWOT systems are available for under $2,000.
The question Brad puts to survivors is not “which is better in a lab?” It is: “Which one can you actually do, consistently, at home, over the months and years that brain recovery requires?” Consistency matters more than peak intensity in long-term neurological recovery.
Starting EWOT With DeficitsEWOT does not require running on a treadmill. The exercise component can be a stationary bike, a recumbent bike, or simple seated leg movements with one limb strapped in. The goal is to raise circulation enough to push oxygen into the plasma, not to hit a cardiovascular fitness target.
For survivors exploring this option, Brad’s team has built a specific resource at onethousandroads.com/stroke-recovery with a listener discount of $100 to $500, depending on the package. There is also a broader introduction to EWOT at onethousandroads.com/pages/exercise-with-oxygen-therapy.
Recovery Is Possible – And It Does Not Have to Be ExpensiveIf this episode resonated with you or if you want to explore more conversations about recovery options that do not require a second mortgage, Bill’s book, The Unexpected Way That A Stroke Became The Best Thing That Happened, is available at recoveryafterstroke.com/book.
And if the Recovery After Stroke podcast has been useful to you, you can support it financially at patreon.com/recoveryafterstroke. Every contribution helps keep the show going and these conversations accessible to survivors around the world.
This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
EWOT for Stroke Recovery: The Affordable Alternative to Hyperbaric Oxygen TherapyWhy pay $60,000 for hyperbaric oxygen? EWOT brings oxygen therapy into your living room — and could help the brain cells that are only offline.
One Thousand Roads
Exercise With Oxygen Therapy (EWOT)
YouTube Channel
Dive deeper on EWOT and red light therapy.
Read the blog on Oxygen therapy for Stroke Recovery
Highlights:
00:00 Introduction and Background
05:37 Challenges in Stroke Recovery and Treatment Options
13:45 Understanding Oxygen Therapy and Its Mechanism
15:51 Oxygen Toxicity Explained
19:24 The Importance of Oxygenating Blood Plasma
24:53 Oxygen and Mitochondrial Function
31:16 Adapting Exercise for Stroke Survivors
38:27 Cost and Accessibility of Oxygen Therapy Devices
Transcript:
Introduction – EWOT for Stroke RecoveryBrad Pitzele (00:00)
like many of your listeners, when you have a medical issue that isn’t treated by traditional medicine and you’re desperate to get your life back, you’ll try just about anything. You, the lens it goes through is like, Well, how bad can this hurt me?
BIll Gasiamis (00:15)
Welcome back to Recovery After Stroke. I’m your host, Bill Gassiamas. Today’s guest is Brad Pitzele, founder of 1000 Roads, who overcame significant health challenges of his own and along the way discovered the science behind exercise with oxygen therapy. In this conversation, we get into how increasing oxygen saturation in the blood, specifically in the blood plasma, can help reach the inflamed microcapillaries.
That are blocking oxygen delivery to cells in the recovering brain. We talk about mitochondrial dysfunction, post-stroke fatigue, and why Ewatt is worth understanding as an accessible alternative to hyperbaric oxygen therapy. Before we get into it, if you’ve found value in this podcast and want to support it financially, you can do that at patreon.com/slash recovery after stroke.
And if you haven’t yet read my book, The Unexpected Way That a Stroke Became the Best Thing That Happened, it is available at recovery after stroke dot com slash book. Here’s my conversation with Brad.
BIll Gasiamis (01:19)
Brad Pitsley, welcome to the podcast.
Brad Pitzele (01:22)
Thank you so much.
BIll Gasiamis (01:24)
Thanks for reaching
out and ⁓ connecting with me to educate me on another thing that I can bring to stroke survivors that could potentially help them in the rehabilitation side of their brain. The the thumbnail that people found on YouTube is probably gonna have E W O T on it somewhere. E what. And it sounds something like something out of that ⁓ space war out of out of what is it?
Brad Pitzele (01:53)
Star
Wars. Star Wars.
BIll Gasiamis (01:54)
Star Wars.
Like the Ewok, right? And it doesn’t really mean anything to me. But before we descri tell people what Ewok is, ⁓ tell me a little bit about your background, the work that you do and how it is you came to be on the podcast today is for s for for the specific discussion that we’re gonna have.
Brad Pitzele (01:58)
Yep.
Sure. ⁓ yeah, so I ⁓ I I’m an e recovering engineer. I like to joke. I spent my first decade of my life engineering. later on in life, I left engineering and went into different pursuits and I became chronically ill, had a variety of medical issues, ⁓ cancer, autoimmunity, and eventually Lyme disease.
And I was in really bad shape. And a doctor recommended I look into either hyperbaric oxygen or this exercise with oxygen therapy, EWAT, that almost no one had heard of, and I’d never heard of it. ⁓ I I I had tried like everything to get better at this point. I was many years in special diets, ⁓ all sorts of supplements and ⁓ all sorts of modalities and things. And
nothing really worked. There was nothing in a matter of fact, some of the medications I took actually gave me cancer. So it kind of forced me on this road to try something different. ⁓ and eventually I found my way back to health through exercise with oxygen when so many things weren’t working. ⁓ and actually later paired that with ⁓ red light therapy. ⁓ and along the way I started because I’m an engineer and I’m inquisitive, I like
It was Lyme disease is kind of a do-it-yourself disease. ⁓ so I started digging in and pouring into research, not just on Lyme disease, but autoimmunity, ⁓ chronic illness, ⁓ trying to figure out what the heck was going on with me. And so ⁓ what I found about exercise oxygen therapy along the way was really fascinating to me. and about a year into using it, I went back to that same doctor and he was kind of shocked.
At my turnaround, and he was like, What did you use? Did you do oxygen? And I said, I did. And he was like, Who’d you buy it from? I want to tell my patients about it. And I said, I didn’t buy it, Doc. I actually ended up making my own. And he was kind of surprised by that for obvious reasons. And then he said, Well, gosh, would you consider making it for my patient? And so, my patients, and so
that’s how we got into this business back in two thousand eighteen. We launched one thousand roads to kinda make exercise with oxygen therapy accessible to people who are dealing with chronic health conditions.
BIll Gasiamis (04:39)
Okay. And it stems from science, right? There’s scientific data that backs up this exercise with oxygen therapy. Before you go into that a little bit, we don’t have to go deep into it, but we can just ⁓ chat about it. ⁓ when I talk to stroke survivors, they get stuck always with what should I do? What should I do? What should I do? They want the
The blue pill, take that one, everything gets fixed. I mean, stroke is not like that, right? And it’s and it’s stroke is also a you’re on your own kind of thing. Because once you get out of the acute phase, once you get sent home, the ⁓ follow up and the medical fraternity doesn’t have a system to kind of say to you, we can’t help you. Speak to that guy. ⁓ that guy might not be able to help you, but but there’s a guy over there.
Brad Pitzele (05:09)
Yeah.
Challenges in Stroke Recovery and Treatment OptionsBIll Gasiamis (05:33)
Like there’s none of that. And stroke survivors need podcasts. They need ⁓ people selling all sorts of crazy stuff that they will almost try almost all the time. They’ll try everything. And then they’ll pick and finally stumble into one that helps and gets them a result. But before we talk about all of that, what I want to do is also go back to what you said about ⁓ a year later, you went to your doctor, he was stunned at the result.
We can’t put that down just to eat what? We can’t put that down just to exercise with oxygen therapy. Give me the brief steps on the other things that you also attended to because people miss that.
Brad Pitzele (06:15)
Yes.
Yeah.
I well, here’s what I’ll tell you. I started I started to get arthritis in my hands in like 2010 or eleven. and then I started taking traditional drugs for it. And one of the side effects of the drugs is higher risk of cancer and specifically melanoma, which I developed in two thousand thirteen, I wanna say, maybe two thousand fourteen.
And that kicked me off the traditional medical path. ⁓ to your point, you don’t you don’t in the stroke recovery, there’s not a traditional path. There it was a traditional path, but it was clear that it was a you know it was a choice between cancer and autoimmunity, and neither one seemed great to me. ⁓ from there I tried so many things, Bill. I did s I actually made a list recently and looked at it because I had it like just off the top of my head, I came up with 200 different things I did try. We’re talking special diets.
Eating all sorts of weird, strange things, all sorts of supplements, antibiotics, because it’s Lyme disease, herbal protocols, ⁓ ozone treatments, sa various different types of saunas, ozone sauna, infrared sauna, ⁓ heat steam saunas, ⁓ colonics, coffee enemas, ⁓ weird stuff, you know, you’d never think you’d do. I mean
BIll Gasiamis (07:39)
You are committed
Brad Pitzele (07:42)
‘Cause
like many of your listeners, when you have a medical issue that isn’t treated by traditional medicine and you’re desperate to get your life back, you will you’ll try just about anything. You the the lens it goes through is like, Well, how bad can this hurt me?
Like like ’cause I know where I’m going right now. For me at least it was a I was just like this gradual step down.
It was like I knew like I I couldn’t do this. I had a young family. so, you know, that doctor, I remember him saying, like, look, Brad, we’re trying all these things, we’re gonna get you on thyroid medications and get that right, and we’re gonna do this. ⁓ there on that list of 200, there were about eight things that gave me any kind of benefit that I could identify. ⁓
But I remember he’s like, Brad, we’re gonna take out the big dog. We’re gonna do this ozone treatment. And it’s a special kind where we remove the blood from your body, we inject ozone, put it through UV light, and put it back into your blood. And this helps everyone. Like if nothing else works, this helps, but it’s really expensive. So we’re saving it, kind of. So he he did it. He’s like, do a course of three of them. And he’s like, You might feel bad after it the next day because it kills a bunch of stuff and might you might feel toxic. Or you might feel better. We’re not sure.
And give it a few days. And like I did all three of them, I never noticed a difference. And it was ⁓ the most depressing, scary part was like going through that. So when he said go do oxygen, I was like, Okay, like I’ve done everything else. I’m just gonna check the box so the doctor knows that’s not gonna work, so we can go try to find something else. ⁓
And I didn’t believe it was gonna work. I I you know, I didn’t jump on the the bandwagon gung-ho. I was, you know, kind of kicking and screaming. And that was part of the reason I built my own, is because at the time they were so expensive and the they were five to twenty-five thousand dollars. And I was like, I just can’t spend, you know, ten thousand dollars on an experiment. I just can’t do that. ⁓
And he also suggested maybe hyperbaric and that was like fifty or seventy-five thousand dollars. And I was like, geez, if I knew this was the the blue pill, as you said it, if I knew this was the blue pill, I’d go mortgage the house and I’d go do it because like then I could work full and I could do all the things, I could be present for the family, but ⁓ I couldn’t.
BIll Gasiamis (10:05)
And and and
you know what? And it’s not, and and the reason it’s not for a lot of people is because you need to have penumbras the brain from a stroke survivor perspective that are recoverable and that you can bring back to life that are offline, not dead by ⁓ cell death because of the stroke. And there’s no diagnostic process in the majority of the people I’ve spoken to, you can’t diagnose somebody and then work out whether they’re a candidate, and that really
Brad Pitzele (10:20)
Yeah. Right.
BIll Gasiamis (10:33)
Pisses me off to somebody gonna have to spend 50 grand to find out if they’re gonna get a result, right? The s the guys that who I’ve interviewed about hyperbaric oxygen therapy, ⁓ Viv clinics, ⁓ those guys will do a thorough diagnostic beforehand to determine whether somebody is a candidate. And whatever that costs, even if it’s five grand, I don’t know what it does cost, but even if it’s five grand, at least you can go, you’re not a candidate, don’t spend any more money.
Brad Pitzele (10:38)
Yeah.
Right.
higher yes, you have a higher level of certainty
before you spend the money.
BIll Gasiamis (11:04)
Yeah. And if you do do it, you’re doing it for the other ⁓ non-brain related benefits that you’re gonna get from hyperbaric oxygen therapy. And that’s totally up to you. But it’s not the thing to supposedly fix the arm or the leg that doesn’t work, or to ⁓ repair the damaged cells in your brain. So that part really frustrates me. And if I’m gonna spend that much money, then there’s the opportunity cost as well. It’s like
Brad Pitzele (11:33)
Yes.
BIll Gasiamis (11:34)
Now I
can’t spend that somewhere else.
Brad Pitzele (11:36)
Exactly. That was me too. It was like you you knew you had and I was like, man, if I spend this kind of money on it and it doesn’t work, like nothing’s worked for the last, I don’t know, almost ten years at this point. Like how many of these shots do I have in the cannon, right? Like you you know, now I’m I’m depleted and I’m still sick. And that’s even i and you know this, when you’ve got a chronic health condition, sometimes the psych psychology of it all is just as hard as the condition. And
If you’re like, wow, now I don’t have money. I feel trapped. There’s nothing I can try. Then hope starts to dwindle. And I
say like hope is is like the most potent weapon in recovering from a chronic health condition. It’s a double-edged sword because like you’re s afraid to get hope up because you’ve been let down. But it’s also the thing you need. You ha like when when you start losing hope, and I and I’ve been at that point, it just gets incredibly dark.
⁓ and incredibly scary.
so I I think that was part of it. I just wouldn’t allow it. It was the financial part. I you’re right. You only have so many shots out of the bow. But it was also like if it doesn’t work and I am depleted financially you know, I don’t like that that brings me to a a level of hopelessness I I’m not sure I can confront.
BIll Gasiamis (12:53)
Yeah. And then in order to get back up, you’re getting back up, you’re financially depleted, you’re energetically depleted, your health is depleted. And it’s like, my God, that is a that is like the lowest place that you can find yourself and to get back up is a lot harder. And yet people have still done that, but I know the task is harder. I’ve been in a similar sort of situation.
Brad Pitzele (13:12)
Yeah.
We all love
we all love reading that inspirational story. No one wants to live it if they can avoid it, I’ll tell you.
Understanding Oxygen Therapy and Its MechanismBIll Gasiamis (13:23)
Avoid it. Yeah, a
hundred percent. ⁓ so so you’ve tried all this stuff, you’re unwell, and then somebody says to you, try oxygen. Now, what I imagine when I hear oxygen is get a can from the local gas supplier, ⁓ pop pot in a tube, put it on the back of your chair, wheelchair. You know, I’ve seen a lot of older guys who have got it, and then they’ve got oxygen attached to their face and they’re breathing in oxygen. What specifically did
your doctor tell you to get and if you didn’t get what he suggested, like w what did it look like for you?
Brad Pitzele (14:00)
Yeah, so the challenge with bottled oxygen is number one, it’s almost impossible to get. number two is when you exercise, you can take in a massive amount of oxygen, and that’s part of what makes the the therapy really cool. So y you and I sitting here, maybe we’re taking in three liters of oxygen a minute, okay? ⁓ three liters of air a minute, maybe something like that. ⁓
When you’re exercising, you can easily take in 50 or 60 liters. So it’s a massive multiplier. So you need something that’s going to give you a large amount of oxygen. Now, there’s two ways you can get oxygen in your home. One is that bottle you mentioned, and then you’re always refilling it, and you can imagine lugging one of those things around. ⁓ the other way is there’s a device called an oxygen concentrator, and all you do is you plug it into the wall.
And it turns the it purifies the oxygen in the room. So, you know, at sea level, the oxygen in the room has 21% oxygen and it can purify it to 93%.
Now, the challenge with these devices is they put out either five or ten liters of oxygen in a minute. So not enough to exercise with. If you were to try to exercise with it, you would also be sucking in this air at 21% and diluting it. ⁓ and so what you do is you take this device and you fill a large reservoir, it’s about a thousand liters, ⁓ and you fill it up.
using this device and then you hook up a hose with a mask on it and then you breathe through the mask while you do a fifteen minute exercise session.
BIll Gasiamis (15:41)
Okay. A reservoir, ⁓ water tank.
Oxygen Toxicity ExplainedBrad Pitzele (15:45)
It well it it’s like it looks like a big pillow. So it’s like six you know, two meters by two meters, sort of ⁓ big pillow, six feet by six feet for us still on Imperial. And you fill it up so a thousand liters and it’s you know it’s it’s thin film and so it’s not a a rigid body of something, and then yeah, it’s a bag.
BIll Gasiamis (16:06)
It’s a bag. Like
a bagpipe, a massive bagpipe.
Brad Pitzele (16:10)
There you go.
BIll Gasiamis (16:12)
Okay. Okay. W I’m sure there’s an image of that, right? We’ll put it on the screen. People can see it while we’re talking about it, trying to work out what it is. Okay. So this thing is something that you accessed and you used specifically for yourself, how many years ago?
Brad Pitzele (16:16)
Yeah. Yeah.
I’ve s I’ve been using it for a decade straight now.
BIll Gasiamis (16:33)
Okay. This stuff’s been around for about a decade. This
Brad Pitzele (16:37)
It’s well, the the research on it goes back to the nineteen sixties and seventies. This it’s really fascinating. actually some of the early research goes back to the turn of the ⁓ twentieth century, the nineteen hundreds. So in the early nineteen hundreds, a gentleman named Otto Warburg won a Nobel Prize for proving that he could turn any cancer or any regular cell into a cancerous cell by depriving it of oxygen.
⁓ and so there’s this really well-established linkage between oxygen and cancer. Even today, a ton of research on that. So in the 1960s and 70s, there was a a German physicist and prolific inventor named Manfred von Arden. Now, and he started to want to do research on Otto’s work, and he he actually started doing research on exercising with oxygen as an anti-cancer protocol.
And some of the research he found was really fascinating. what without getting overly technical, basically it our circulatory system, obviously, this is really relevant to stroke, ⁓ people deal in strokes, is as you get down into the the end runs of your circulatory system, there’s capillaries and they’re like thinner than a human hair. And this is where your nutrients and your oxygen are actually exchanged with the cell.
And what he found is as we age naturally this inflammation builds up on the lining of our capillaries. And it actually causes the capillaries to swell shut so that now none of your red blood cells can get by. Now, I mean, this is how exquisite our body is designed. ⁓ our capillaries are actually thinner than a red blood cell. So under the most healthy of conditions.
A red blood cell actually needs to fold up like a taco to get into our capillaries and deliver that oxygen in the last mile of our circulatory system. So any
swelling in that capillary can cause a blockage. And now all the cells downstream are not getting oxygen and in a sufficient quantity. And so they kind of go into what they what he kind of referred to as like a brownout, right? Like it’s a low energy state. They’re doing anaerobic respiration to get some energy. Maybe some of the smaller red blood cells might squeak by here and there and give a little bit, but they’re not getting the full oxygen they need. And what he found is by doing this procedure,
just a few times he had very elderly people with very inflamed ⁓ capillaries. He was able to re-establish normal blood flow. And the reason is is oxygen is incredibly anti-inflammatory. ⁓ and a lot of research on that we can go into a little bit later.
The Importance of Oxygenating Blood PlasmaSo, number one, it causes this anti-inflammatory reaction inside these inflamed capillaries to reopen them. But it also does something really amazing that he discovered is when you’re doing this procedure, ⁓ it causes the oxygen to not just attach to our red blood cells like it always does, but it also saturates our blood plasma, which is this clearish liquid that our red blood cells ride on. And
Our blood plasma is a thousand times thinner than a red blood cell. So if you imagine these blockages, red blood cells are not getting through, but obviously the blood plasma can get through as long as it’s like as thin as water. So as long as there’s any opening there, and it can immediately deliver oxygen downstream, both to cause an anti-inflammatory impact in the capillaries, but also to all those cells that are starving. And so you can obviously, as we’re talking through this, you can kind of
see how this fits folks who are dealing with various different strokes ⁓ and how that can help them as well.
BIll Gasiamis (20:32)
Yeah. Okay. I d before we spoke I did a little bit of research and found ⁓ as well that there’s some there’s a lot of relevant data with regards to oxygen and ⁓ increasing the oxygenation in the blood. you so tell me a little bit about oxygen. I I don’t understand exactly what that is. I’ve heard of people becoming ill.
Because of too much oxygen, ⁓ ill because of not enough oxygen. So what is what what is becoming ill of too much oxygen and why is ninety nine percent saturation not that?
Brad Pitzele (21:18)
Yeah, yeah. ⁓ good question. So oxygen toxicity can occur if you get too much oxygen under certain circumstances. So if you’re in a hyperbaric chamber too long, it can cause oxygen toxicity. And basically that’s when oxygen gets trapped in your bloodstream and it can’t get out. and
You can actually get it without hyperbaric. So hyperbaric is oxygen under pressure. You can get it at normal barracks. So if you were just sitting on the couch breathing oxygen, you could eventually get oxygen toxicity. Now, it would take over twenty-four hours. So if you were breathing just pure oxygen, no exercise, sitting on your couch for 24 plus hours, it starts to get into the risky zone.
When you’re doing exercise with oxygen, that’s actually one of the cool things about it that because of the synergies of exercise and oxygen, it’s impossible to get oxygen toxicity for two reasons. one is that reservoir is only a thousand liters. it’s not a high enough dose that you could get a oxygen toxicity. It is a massive dose, it’s about the same amount of oxygen you take in in a day, and you can take it in in 15 minutes, but it’s not more than.
And the second reason, even if we could make our reservoir 10x, 100x, and you could exercise nonstop, you still couldn’t get oxygen toxicity because when you’re exercising, your body produces a massive amount of carbon dioxide gas.
And that goes into our bloodstream and it increases pressure in our circulatory system. And that actually forces the oxygen out of the circulatory system and into the cells. So it works as a protectant as well from oxygen toxicity. So that’s oxygen toxicity. It’s a real risk. ⁓
Most of the time it’s a very controllable risk. You know, if you’re doing hyperbaric, they’re gonna keep you in there for so long so that you’re not gonna be at risk generally. ⁓ if you’re assigned to do oxygen while you’re stationary at home, they have protocols to make sure you’re not doing it, you know, twenty-eight hours nonstop sort of thing. ⁓ or they have you wear a cannula where where you’re also taking in air and it’s diluting it.
⁓ and in exercised oxygen therapy, it’s not really possible because of the massive amount of carbon dioxide. ⁓ now, not enough oxygen. So if you if you want to measure your oxygen in your blood, the way they normally do it is a device called the pulse oximeter. You can get one for 20 bucks off Amazon. What it does is it looks at how much how many of your red blood cells are saturated with oxygen. And what you’re gonna find in most folks.
Is it’s close to a hundred percent. It’s ninety-eight percent, it’s ninety-six percent, ninety-seven percent. ⁓ there’s not a lot of room in our blood for more oxygen. So that’s why it’s important that ewak can actually oxygenate our blood plasma. The same with hyperbaric does the exact same thing, it oxygenates our blood plasma. So
BIll Gasiamis (24:26)
Okay. I think before you go on,
that’s the key ingredient. It’s oxygenating the plasma as well. Where where previously you’ve got let’s say ninety seven, ninety eight percent saturation of your red blood cells. What we’re doing is adding that little bit of extra oxygen into the space where the plasma is. That’s kind of the key difference.
Brad Pitzele (24:36)
Yes.
And there’s two reasons why it’s important. so normally, just for comparison, you and I sitting here, maybe 2% of all the oxygen in our blood is in our plasma, so it’s not very much. ⁓ but under these conditions of IWAT and hyperbaric, we can saturate that blood plasma. And it’s important for two reasons. One, obviously, it increases the oxygen carrying capacity of the blood, but that’s the more minor one. The more major one is that the blood plasma can get into
let’s just say the nooks and crannies, smaller spaces in our body where inflammation is blocking off access of red blood cells to downstream cells. And so it can deliver a dose of oxygen where it normally is not able to get.
BIll Gasiamis (25:40)
You you’ve spent a lot of time on this topic by the sound of things. ⁓ and that’s really awesome. So before we talk about how to actually use a device, how to get a device, how to how to behave while you’re using a device, I wanna understand like how
Oxygen and Mitochondrial FunctionBrad Pitzele (25:52)
Yeah.
BIll Gasiamis (26:02)
How you notice the difference in yourself? Because a lot of people ask me what I did in my own stroke recovery. And Brad’s experience is going to be different from the stroke survivor’s experience. My experience was ⁓ I’ve got nothing from the doctors other than let’s monitor your bleed, let’s give you brain surgery. I mean, that’s not nothing. That’s amazing. Like I’m very
Brad Pitzele (26:05)
Yeah.
Yes.
BIll Gasiamis (26:31)
Grateful for all of that. That removed the the blood vessel that was leaking that was going to potentially kill me. ⁓ so the immediate risk was gone. And then what what I mean I I got nothing is the specialists did their specialty and then I got nothing because they don’t do nutrition, they don’t do exercise, they don’t do meditation, they do brain surgery. And it’s really important for stroke survivors to understand that when you go to a doctor, a neurologist, whoever.
Brad Pitzele (26:55)
Yeah.
BIll Gasiamis (27:00)
They do a specific thing, and once they’ve done it, they can’t do anything else. And you need to get over the fact that you ⁓ might feel disappointment at the at that I don’t know where to go next, and they don’t know where to send you. Okay, they’re not trained and they cannot legally send you elsewhere. That’s why you’re kind of on your own. So I did meditation, I did nutrition, I did all this kind of stuff and
Brad Pitzele (27:16)
Yeah.
BIll Gasiamis (27:27)
Somebody who’s interviewed you is Dave Asprey. I would I’ve been following Dave Asprey and a whole bunch of other guys ⁓ probably since around 2012, 2013. And what I learned was how do I reduce the inflammation in my brain? And I had that one area of inquiry, the one area of inquiry that I could personally impact positively by taking out inflammatory foods from my diet.
And before that it was, you know, ⁓ processed white bread, it was alcohol, it was cigarettes, ⁓ it was all the stuff that you get in a packet that doesn’t really help to nourish the body, right? So I went back to basics. We’ll call it just for the simplicity of the explanation, we’ll call it protein, ⁓ vegetables and basic carbohydrates like rice or potato.
And then what I found was that inflammation decreased, and that was a game changer in how I experienced my brain. And it was a game changer in how quickly I improved neurologically. But just so that people know, it wasn’t the be all end all, it didn’t remove the damaged cells that still are in my head that mean I experienced my the left side of my body in a completely different way than my right side.
I’ve got numbness, proprioception issues. I’ve got ⁓ tingling, I’ve got burning, I’ve got ⁓ spasticity, you know, the muscles are tight. So all that stuff is still there. But I have a better experience of the rest of my body and brain because of the things that I took out. But what I didn’t have was the link between exercise, which I do, light exercise, because I’m a stroke survivor. I can’t.
use the left side of my body like I used to. so I would do exercise ⁓ like riding an electric bike because it’s easier to pedal, like walking and like doing very light weights at the gym. ⁓ but I didn’t have that oxygen part of the the therapy. And that’s kind of why I interviewed the guys about hyperbaric to understand how oxygen supports how
mimicking i a hypoxic brain in the chamber supports ⁓ so how how does like what’s the next part like how does that support the brain to heal let’s give stroke survivors an understanding so that they can kind of grasp that I know we spoke about how oxygen gets into the ⁓ into the red blood cell we spoke about how it gets into the plasma but like
Brad Pitzele (30:15)
Yeah.
BIll Gasiamis (30:20)
Why is that the next step?
Brad Pitzele (30:21)
What’s it too?
Yeah. It’s a good question. I think you’re right. I you know, we don’t I will say we don’t try to go out and pitch like exercise with oxygen therapy is a panacea or it’s everything for everyone. Even the name of our company, ⁓ one thousand roads, is about paying homage to everyone’s own healing journey and recognizing everyone’s unique journey.
So I’ll say that, butSo I’ll say that, but what I found about oxygen was in IWA in particular. What was fascinating to me was for me when I was dealing with Lyme disease, which similar to folks who are dealing with the stroke, there’s a variety of different symptoms and s from different causes. And I was trying to treat all these things with different protocols, different supplements that and I found that when I started digging into oxygen, I was shocked at how many of them came back to it. So when you have
A stroke, often there’s a lot of ⁓ emerging research about mitochondrial dysfunction. And this is interestingly, mitochondrial dysfunction. Now ten years ago when I was researching it, no one heard of it or cared about it. And it’s really burst onto the scene because you’re gonna find it
⁓ At the heart of so many chronic health conditions, right? ⁓ you’re gonna it’s actually they’re looking at it in cancers, ⁓ chronic illnesses of all sorts, Alzheimer’s, all sorts of cognitive and ⁓ autoimmune conditions, etc., etc. So ⁓ you have this disrupted mitochondria, right? So there was a period of time when your cells were not getting enough energy, whether it was a hemorrhagic stroke and
Blood wasn’t being delivered to those cells, so no nutrients, no oxygen, or an ischemic stroke where they were just cut off ⁓ because of a clot or whatnot. And so they were not getting nutrients. In each of these cases, what happens immediately when the cell runs out of oxygen, like I was talking about that brownout, it goes from aerobic respiration to anaerobic respiration. And anaerobic respiration, ⁓ it’s
It only can produce 5% of the energy as aerobic. So the cell is in a low energy state, which is the first problem, which means it doesn’t have energy to repair, it doesn’t have energy to take out the trash, detoxify. so it’s kind of stuck. But also ⁓ it creates a lot of metabolic waste. So it creates lactic acid, it creates free radicals, all these things produce more inflammation, like you were talking about. So
Now we’ve got these mitochondria, which are dysfunctional. They don’t have the energy to repair. They don’t have the energy to take out all these dead cells or ⁓ you know, all these other byproducts of the immune system and the natural kind of response to this damage, which then leaves more of it hanging around to produce more damage, and they’re producing more damage themselves. So it’s kind of like this swirl, and it’s ⁓ you know, it’s a downward swirl, if you will. ⁓ so
When you can re-oxygenate the mitochondria, the first thing you’re doing is you’re giving them the energy to do whatever it is they need to do. ⁓ and that can be the immediate like feeling sharper, like, ⁓ I feel like I can get my thoughts together quicker. ⁓ it can be, ⁓ I feel like I’m more in control of my emotions. And I I don’t feel like sometimes I have a disproportionate emotional response to something. It can be I I don’t have that brain fog.
⁓ you know, that sort of thing. Or I literally have energy. So our brain actually consumes like 20% of all the oxygen in our body. And it’s only like two percent of the mass. So it’s like punching 10x its weight, right? So when your body starts running low on oxygen, it starts conserving. And the one of the things it tells you to do is like cool it, like stop using your muscles. You’re tired. You need to just sit there and veg out.
BIll Gasiamis (34:06)
Mm-hmm.
Brad Pitzele (34:27)
while our mitochondria try to catch up. And so that’s often that chronic fatigue that folks with a variety of health conditions, including stroke, feel, which is their bodies like, stop using energy, we don’t have enough. We need to redeploy it for something else more pressing. And so
When you can reestablish normal oxygenation, it improves energy. ⁓ it improves sleep, it improves memory. and the the cells have energy to start repairing and detoxifying. ⁓ and then obviously I always think it’s cool because we’re pairing it with oc with exercise. And there’s so much research on the benefits of exercise. You mentioned it was so important, Bill, in in your healing journey.
And you know, we know how important exercise is for a stroke survivor.
Well, now we’re pairing it with oxygen and we’re using that exercise to catapult more of that oxygen around the body through the circulatory system while your blood vessels are dilated and opening up. So if you’re still dealing with blockages in your microcirculation, which most stroke survivors are.
You’re opening them as wide as they they naturally can at that moment, and that’s when we’re feeding more oxygen to them. So it works it kind of hand in hand in that respect.
BIll Gasiamis (35:48)
All right. Now one glitch. Stroke survivors often are struggling to get into the physical recovery, right? Because the body goes offline, one of the legs doesn’t work, one of the arms doesn’t work. It’s a real challenge, right? So how how can we benefit from that even though we are at just after the acute phase where there is not a lot of capability for
Brad Pitzele (36:00)
Yes.
It’s perfect.
Yeah.
BIll Gasiamis (36:17)
physicality and I I say that so that the stroke survivors listening know that what I’m leading to is that early on it’s probably harder to do ⁓ physical therapy, exercise, et cetera. But again, with time and hope, all of those things can improve. Right. So I I wanna put that out there for stroke survivors, but also like it’s a can it’s a it’s a constraint.
Brad Pitzele (36:48)
Yeah. And you know, because a lot of our customers are dealing with chronic illness, this is a question that’s not uncommon is like, yeah, but I can’t I’m not out here to run a mile, Brad. I’m like eighty years old and I’m sick or whatever it is. The really ⁓ the really cool thing about ⁓ Ewatt is that it will meet you where you are at. So there is something all of us can do. The goal is to increase your heart rate and your circulation.
Cost and Accessibility of Oxygen Therapy Devicesand breathe the oxygen. So there’s a few ways you can do it. you know, it doesn’t have to be banging it out on a treadmill trying to get your seven minute mile. ⁓ you don’t need to do that. We have folks, you know, depending on where they are, you can start with slow walking on a treadmill. You can start with calisthenics. You can start with stretching.
⁓ gentle aerobics in your living room. You can start by, you know, lifting weights. You could be sitting and lifting weights with the the hand that’s not. We have folks, and this is probably not so much for ⁓ stroke survivors, but maybe jumping on a ⁓ a rebounder, like a little trampoline if you’ve got the balance one with the handle. ⁓ we have people using under-the-desk pedal bikes, the ones you can get for $49 on Amazon while you’re sitting.
BIll Gasiamis (38:03)
Beautiful.
Brad Pitzele (38:04)
while you’re sitting in a chair. And then for the folks who can’t do any of that, we have we even have them doing what I call passive Ewatt, which is they will breathe the oxygen while they get in like a an infrared ⁓ sauna blanket. So infrared sauna will increase your heart rate. And so you will get some benefit out of it. And what normally happens, the the really cool thing about exercising with oxygen is
The first thing folks notice, the very first benefit most folks notice when they start doing is the exercise is easier. So I always describe this like if you were ⁓ jogging on a treadmill at, I don’t know, pick a number, you know, four miles an hour and you put the mask on, you wouldn’t feel like you were getting the same exercise at four miles an hour. You you crank it up to four and a half, and then later you crank it up more. And
Your endurance actually improves much more quickly than if you were just doing exercise alone. ⁓ and there’s a ton of actually research on you know Olympic athletes using it for performance enhancement, which is not what we’re using for in this, but it’s kind of a nice little side effect. So we have folks who come to us who who are out of condition. We’re not talking about the physical disabilities, but out of condition, we’re like, I couldn’t do.
And they’re shocked at what they’re doing and they come back and tell us in three months, look what I’m doing, sort of thing. ⁓
But it will meet you where you’re at. So if you want to do passive Ewatt, you can do that for a while as you’re working and as you start to feel better. Then maybe you’re using the under desk pedal bike. And as you’re getting your balance back and feeling better, maybe it’s a a real stationary bike later or walking on a treadmill and so on and so forth. ⁓ the goal isn’t to bust hump and like try to, you know, get a new record. As a matter of fact, I find that for most folks that sets you back. You wanna kind of you wanna
do within an envelope that you’re comfortable with because
If we work out too hard, also we set ourselves back because in most chronic health conditions and in stroke, additionally, we talked about this fatigue that’s due to an energy deficit. So if you go out there and overwork, you’re just putting your body in more of a deficit and potentially putting it in more of an inflammatory environment. And we’re trying to do this at a level that’s in you know anti-inflammatory and helping you recover.
BIll Gasiamis (40:30)
I love that. I love your whole explanation. So in my what I was hoping was you were gonna say that I could just sit there and almost do nothing ⁓ as a stroke survivor, where I’m completely in in just, you know, like week three of the acute after the acute phase, and fatigue is a massive issue and energy is a massive issue, and I’m barely able to stay awake, ⁓ and all of that stuff. And then ⁓ you could do just I hope you I was hoping you were gonna say,
But you said the equivalent of ⁓ chair yoga, you know, where all I had to do was just move an arm or move a leg and do something just to get me physically going and then it would benefit. That’s what I love about it. The under-the-leg pedal bike, ⁓ under-the-desk pedal bike is one of the best things because you can strap in your leg with the deficits if you have a leg that has deficits, and you can do all the or the majority of the pedaling with the other leg, which is strapped in.
Brad Pitzele (41:07)
Mm.
BIll Gasiamis (41:29)
And you don’t you’re not gonna fall over ’cause you sit in in a chair. ⁓ probably you’re doing it inside your house so the the temperature, the weather is always perfect and ⁓ and you don’t have to door for long, right? You only have to door for a few minutes to start with.
Brad Pitzele (41:45)
And you’re pulling that other leg around and it’s starting to fire inside here and rebuild those connections. And and as you know, exercise increases ⁓ brain drive neurotrophic factor, which is a growth factor in our brain for
BIll Gasiamis (41:51)
Mm.
Brad Pitzele (42:00)
neuroplasticity. So you’re getting you’re getting all of these benefits. So you to your point, for someone who’s if it’s my right leg’s not working and I’m strapped in and my left leg’s doing it, my right leg is firing and it’s firing those neurons at the exact time you have that B D N F as it’s called. So
BIll Gasiamis (42:17)
BDNF’s amazing. And I also interviewed ⁓ recently a gentleman who ⁓ had spoken about ⁓ Jack Clifford on episode 402 who spoke about kind of ⁓ a protocol that enables you to regenerate blood vessels around the area that’s injured ⁓ to increase the oxygenation and the blood flow ⁓ to potentially those areas where
⁓ brain is offline, not dead. ⁓ so all of these things, ⁓ the previous episode that I recorded with Jack, your episode right now, like all are things that you can do that support brain health, brain recovery, ⁓ overcoming all the some of the challenges that stroke causes. And what I love about this specifically is that you can do it from your house.
and you don’t have to go anywhere, but there is a cost. So let’s talk about the cost a little bit because I I want to mention it because of the massive difference to hyperbaric, which can cost up to sixty grand if you go on the right protocol. And ⁓ that’s unattainable for most people, let alone a stroke survivor who just lost their ability to earn ⁓ and may not have sixty grand to splash.
Brad Pitzele (43:48)
Yeah.
BIll Gasiamis (43:48)
⁓
so what is the cost of getting a machine, setting it up and putting it in your house?
Brad Pitzele (43:54)
Yeah. So we sell two different machines. ⁓ we have one machine that’s eighteen hundred and ninety-nine dollars and the other one that’s twenty-four ninety-nine. ⁓ that’s everything you need to get going other than the exercise equipment. and the machines last a long, long time. I think I
You know, I think we actually we’ve been in business since 2018 and we had our first customer come back and tell us they wore out their machine like this year. So I have to stop saying we’ve never had one wore wear out yet. So we’ve had one. ⁓ so it it’s one of I think that’s one of the things that’s great about it is it’s something you can do in your house. It’s something that doesn’t take a lot of time. When I was dealing with my chronic health issue, I was
joke around about the ceremonies of counting pills and doing this modality and doing that. And they all in stroke survivors, I think, recognize the same thing. It starts to crowd out your life. And then eventually you kind of throw your hands up. You’re like, I it might be helping, but I just don’t have four hours a day for all this stuff. Like I just I need to go on and and live my life too. So it’s something that ⁓ it’s 15 minutes. You do it three to five times a week in your home.
⁓ it’s a one time expense and then it’s you know, it’s something you’ll have for many, many years.
BIll Gasiamis (45:12)
I love it. Where are you located?
Brad Pitzele (45:15)
We’re in a Dallas, Texas area.
BIll Gasiamis (45:17)
Okay. And are these things easy to get and distribute throughout the United States and other places in the world? I don’t know I’ve never heard of it before. So are there other people around who who sell a product that’s similar or can you access them easily?
Brad Pitzele (45:35)
Well, we do ship worldwide. ⁓ we ship with US power, so people get a power converter we’ve sold to the UK, to Australia, to all over Europe, Asia, ⁓ South America, ⁓ and of course across North America as well. So ⁓ they’re readily accessible. Kind of our mission was
You know, when the doctor asked me if I’d make him first patients, I I I I thought about what you were saying about how like spending sixty grand to find out if something’s gonna work. And I felt like I was taking advantage a lot when I was very ill. So we wanted to make something that was accessible to people who are chronically ill. They might not have the ability to earn money. They’re on a fixed in like I
have a I guess a deep personal experience and empathy there sort of thing. So ⁓ that’s yeah. So we ship worldwide.
BIll Gasiamis (46:27)
Yeah. If somebody wanted to reach out to you just to get more information, to have a chat with you, to look at your website, where would they go?
Brad Pitzele (46:35)
They would go to 1000roads.com slash stroke recovery. We do. And you can find it at the bottom of that webpage, but it’s 1000 Roads HQ.
BIll Gasiamis (46:42)
And you have a YouTube channel.
Okay. What kind of ⁓ things can people find on the YouTube channel?
Brad Pitzele (46:56)
you can find everything about protocols, benefits, ⁓ how to use it. ⁓ we hit have some customer testimonials and parts of that. ⁓ just talking about the science of it, people’s experience with it, et cetera, et cetera, different use reasons people use it.
BIll Gasiamis (47:17)
I think it’s very important to bring information like this to stroke survivors so that they can access things in their own home that’s going to make their life better. I wrote a book, The Unexpected Way That a Stroke Became the Best Thing That Happened, for the explicit reason to give people like a
path forward, a journey forward as to how to ⁓ s how to kind of obtain the silver lining in stroke recovery. And when I wrote it ⁓ in 2018, when I started writing it, something like that, 2018, 2019, I was lacking a lot of the extra pieces that I could put into ⁓ the mindset chapter, for example, or the exercise chapter, or, you know, the nutrition chapter. And
In the last five or six years, I’ve been picking up those pieces to sort of attach to those chapters because they’re really relevant. And with the exercise chapter, I think this protocol was the one thing that was missing because I made the point of how important exercise was. I didn’t make the point of how you can exercise and get more bang for your buck during that exercise by
Increasing the amount of oxygen that you were getting into your ⁓ bloodstream. How would I have known that if I hadn’t come across the science, which I hadn’t? Plus, there’s only so much you can put in each chapter, but this is the perfect addition. Like, and I love it. So I can go on and on about how much I think this is amazing. Brad, I really ⁓ want to thank you for reaching out and joining me on the podcast.
Thanks for the work that you do. I’m glad that you’ve been able to get your health back and now you’re helping other people.
Brad Pitzele (49:06)
Thank you so much, Bill. I appreciate you having me on.
BIll Gasiamis (49:08)
Well, that’s it for another episode of the Recovery After Stroke podcast. I hope you enjoyed this episode. Might be worth listening to it again. The science here is worth sitting with, oxygenating the blood plasma, reopening inflamed microcapillaries, giving mitochondria what they need to shift out of that low energy state. And the fact that it can be done at home at a fraction of the cost of hyperbaric oxygen therapy makes it worth knowing about. If you want to learn more,
or explore the equipment, head to 1000Roads.com Stroke Recovery. Brad has arranged a discount for listeners of this show of between one and 500 dollars, depending on the package you choose. This episode pairs well with the episode 402 with Jack Clifford, which covers a protocol for regenerating blood vessels around the injured area of the brain.
The two conversations complement each other. Worth going back to if you haven’t heard it yet. Now, if this episode was useful, please share it with someone who could benefit. And my book, The Unexpected Way That a Stroke Became, the Best Thing That Happened, is available at recoveryafterstroke dot com slash book. And if you’d like to support the show financially, I would love it if you could. You can go and do that via patreon.com/slash recovery after stroke. I’m Bill Garciamas.
Thanks for listening. See you on the next episode.
The post Brad Pitzele – How Exercise With Oxygen Therapy Brings Hyperbaric-Style Benefits Home appeared first on Recovery After Stroke.
Microplastics and Stroke Risk: What a Landmark 2024 Study Found Inside Human ArteriesIn 2024, a team of Italian researchers published a study in the New England Journal of Medicine that stopped the cardiovascular science community in its tracks. They found microplastics, tiny synthetic fragments embedded inside the carotid artery plaque of more than half the patients they examined. And the patients who had them faced more than four and a half times the risk of a serious cardiovascular event compared to those who didn’t.
This isn’t a distant, theoretical risk. These are living people who had already been identified as having carotid artery disease, and plastics were found inside their arterial walls. For stroke survivors and those at elevated risk of stroke, this study raises important questions that the medical system has not yet caught up with.
What the Research FoundThe study by Marfella et al., published in the New England Journal of Medicine (2024), enrolled 304 patients who were undergoing carotid endarterectomy, a surgical procedure to remove plaque from the carotid arteries. Researchers analysed the excised plaque for the presence of microplastics and nanoplastics.
Their findings:58% of patients had detectable levels of polyethylene, polyvinyl chloride (PVC), or polystyrene in their arterial plaque. This was not contamination from the surgical procedure; it was already there.
Over a 34-month follow-up period, patients with microplastics in their plaque had a 4.53 times higher risk of a combined endpoint: non-fatal myocardial infarction, non-fatal stroke, or death from any cause.
Inflammatory markers were significantly elevated in the microplastics-positive group. IL-18 and TNF-alpha proteins associated with systemic vascular inflammation were markedly higher in plaque samples that contained plastics. This suggests the mechanism is not simply physical obstruction, but an inflammatory cascade triggered by the presence of synthetic material in arterial tissue.
What This Means for Stroke SurvivorsThe carotid arteries are the primary conduits supplying oxygenated blood to the brain. Plaque accumulation in these vessels is one of the leading causes of ischaemic stroke, and carotid artery disease is a condition many stroke survivors are already living with.
“The patients with microplastics in their plaque had a 4.53 times higher risk of stroke, heart attack, or death over the 34-month follow-up. That’s not a marginal finding. That’s a signal the research community needed to take seriously.”
The NEJM study doesn’t yet tell us whether removing microplastic exposure after the fact reduces risk. It doesn’t confirm that healthy individuals with no existing carotid disease are accumulating plastics at the same rate. And it cannot tell us which plastic sources are most responsible because we’re exposed to microplastics through drinking water, food packaging, air, and a dozen other vectors simultaneously.
But what it does tell us clearly and with high statistical significance is that microplastics in arterial plaque are associated with dramatically worse cardiovascular outcomes.
What the Research Does Not Yet Tell UsScience at the frontier moves in one direction at a time. This study establishes association, not causation. It cannot yet answer:
Whether people without existing carotid disease are accumulating microplastics at comparable rates. Whether reducing exposure actively reverses or slows plaque-associated risk. Which types of microplastics are most biologically harmful? Whether there will be a clinical screening tool for this in the near future.
These are the questions the next generation of research will need to answer. In the meantime, it’s reasonable to act on what we do know.
Practical Steps to Reduce ExposureNo clinical screening currently exists for microplastics in arterial plaque. There is no blood test, no imaging, no biomarker that your GP can order today. What you can do is reduce your ongoing exposure, particularly through food and water contact with plastics.
Evidence-informed steps worth discussing with your treating team:
Use glass, stainless steel, or ceramic containers rather than plastic for food and drink storage. Avoid microwaving food in plastic containers; heat accelerates the leaching of plastic particles. Filter your drinking water; some filters (carbon block and reverse osmosis) reduce microplastic levels significantly. Reduce consumption of highly processed foods in plastic packaging. Bring this study to your vascular neurologist, cardiologist, or GP and ask whether it’s relevant to your personal risk profile.
This is not a recommendation to take a supplement or start a treatment. It’s an invitation to have an informed conversation with the people responsible for your care using the best available evidence.
If you found this useful, my book walks through the science of stroke recovery in the same evidence-first, no-hype way. Find it at recoveryafterstroke.com/book.
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Stroke Symptoms Dismissed – What Happens When the CEO of Canada’s Optometry Body Has a StrokeStroke Symptoms Dismissed: François Couillard has spent his career protecting people’s vision. As the CEO of Optometry Canada, the national body representing every optometrist in the country, he understands better than almost anyone how much vision matters, what threatens it, and how to preserve it.
Then he had a stroke. And it only attacked his eyes.
The irony is not lost on François. But what makes his story essential listening for every stroke survivor and caregiver isn’t the cruel symmetry of it; it’s what happened at the emergency department before his stroke even reached its worst point.
His symptoms were dismissed. He was sent home.
When Stroke Symptoms Are DismissedFrançois arrived at the ER with symptoms. He was assessed and sent home. What the medical team didn’t know and what François didn’t yet know was that he was mid-stroke.
He walked home alone in the middle of the night.
This is not an isolated story. Stroke symptoms dismissed at the emergency department are more common than most people realise, particularly when the presentation is atypical. Symptoms that don’t match the classic FAST criteria, such as facial drooping, arm weakness, speech difficulties, and time to call, can be overlooked, minimised, or misattributed. Visual disturbances, in particular, are frequently missed.
For François, the consequences became clear the next morning.
Waking Up With Vision Loss After StrokeFrançois woke up having lost the right visual field in both eyes permanently. The condition is called homonymous hemianopia: a stroke-related vision loss that removes the same portion of the visual field from each eye simultaneously.
Here is what makes it disorienting: the brain doesn’t show you the gap. It fills it in. You don’t see darkness where the vision is missing, you see what your brain invents to complete the picture. You look normal. You appear, in many ways, almost normal.
But you are not.
The Hidden Cost of Stroke Vision LossWhat François describes and what many survivors with stroke-related vision changes will recognise is the extraordinary cognitive load of compensating for what you can no longer see.
The brain works continuously to fill in the missing visual field. That work is invisible to everyone around you. There’s no cast, no limp, no obvious marker. But the fatigue it generates is profound and relentless.
This is the invisible disability that follows many stroke survivors: the gap between how they appear and the effort required to simply exist in a world that assumes full function. Stroke vision loss recovery is rarely straightforward, and the fatigue accompanying it is one of the least-discussed consequences of stroke.
François knows this intimately. He continues to live it.
One Week Post-Stroke: 100km on the BikeOne week after his stroke, François completed a 100km cycling event.
One week. 100 kilometres.
This isn’t recklessness, it’s the character of the man. A pragmatist who processes by doing, who defines himself not by what has been taken but by what remains. His approach to his stroke carries a dark honesty: he hasn’t minimised what happened, but he hasn’t surrendered to it either.
The 100km ride is not a metaphor. It happened.
Returning to Lead a National Health OrganisationFrançois returned to his role as CEO of Optometry Canada. He leads a national health organisation while navigating permanent vision loss, invisible fatigue, and the ongoing adaptation that stroke demands.
He also carries the particular weight of professional identity intersecting with personal experience. The man who has advocated for Canadians’ vision health now lives with the consequences of a stroke that targeted exactly that. He has become, in a specific and irreversible way, both the professional and the patient.
That dual perspective, the insider who became the survivor, gives his voice a precision that very few stroke stories carry.
What This Episode Is Really AboutEpisode 406 of the Recovery After Stroke podcast is not simply about vision therapy after stroke, although François discusses that too. It is about what happens when stroke symptoms are dismissed and the cascade that follows. It is about the invisible burden of neurological fatigue. It is about identity, adaptation, and the kind of resilience that doesn’t announce itself.
If your stroke symptoms were dismissed, or you know someone whose were, François’s story will feel familiar in a way that is both validating and important. If you are navigating stroke vision loss and wondering whether the fatigue you feel is real, it is, and François names it plainly.
Listen to Episode 406 with François Couillard available now on all major podcast platforms.
Bill’s book – The Unexpected Way That A Stroke Became The Best Thing That Happened
Support the show: https://www.patreon.com/recoveryafterstroke
Sent Home Mid-Stroke: CEO of Optometry Canada on Vision Loss and Recovery – Francois CouillardWhen François Couillard, CEO of Optometry Canada, went to the ER with stroke symptoms, he was sent home. By morning, he had permanently lost part of his vision. In this episode, he shares his experience with stroke-related vision loss, invisible fatigue, and the resilience required to adapt and move forward.
Highlights:
00:00 Introduction
01:13 The Stroke Experience
04:14 Diagnosis and Aftermath
13:05 Navigating Recovery and Support
17:13 Vision Challenges and Cycling Safety
23:10 The Impact of Stroke on Daily Life
29:47 Finding New Connections and Balance
37:40 The Importance of Downtime
46:08 Impact of Stroke on Daily Life
51:05 Understanding Stroke and Its Misconceptions
56:18 Mindset and Recovery After Stroke
Transcript:
Introduction – Stroke Symptoms DismissedFrançois Couillard (00:00)
I had no other symptoms. Everything else was functioning. I could touch my nose. I could do everything. So they said you had that episode, you zapped a piece of your brain and now go home.
Bill Gasiamis (00:00)
What a nerd he is.
François Couillard (00:14)
it’s ironic that I worked in the field of the eyes of vision. And the only thing that got affected on my stroke was my vision.
BIll Gasiamis (00:25)
Hello everyone, welcome to the Recovery After Stroke Podcast. I am your host, Bill Gassiamas. My guest today is Francois Couliard, the former CEO of Optometry Canada, the national body that represents every optometrist in the country. Francois has spent his career at the intersection of vision health and leadership at the highest level. And then he had a stroke. His only symptom was visual. He went to the emergency department and was sent home.
And what happened in the months, hours, days and months that followed is a story about the gap between how you look and how you feel, about the invisible cost of neurological damage, and about what it means to keep leading an organization dedicated to the very thing your stroke attacks.
The Stroke ExperienceBill Gasiamis (01:13)
Francois Coulard, welcome to the podcast.
François Couillard (01:16)
Thank you, Bill. It’s a pleasure to be here.
Bill Gasiamis (01:18)
Thank you for coming to me all the way from sunny Canada, it looks like through your window there.
François Couillard (01:24)
It’s very sunny, but it’s cold. was like a few days ago, it was 29 Celsius and then yesterday morning was plus two Celsius. So it’s still a little nippy in the morning.
Bill Gasiamis (01:34)
Ugh.
It was 29 Celsius and plus two.
François Couillard (01:42)
Yeah, it went from 29 to plus two in 24 hours. That’s my part of the world.
Bill Gasiamis (01:46)
Wow,
I thought Melbourne was crazy like that. Often we have 40 Celsius days in summer and then the next day it will be 20 Celsius.
but I think I prefer the 20 Celsius one than the plus two Celsius one.
François Couillard (02:02)
Yeah, and we go in winter, we get to minus 30. So this is not bad. We don’t complain at plus two. Still nice.
Bill Gasiamis (02:11)
Whereas I would definitely complain. Tell me, tell me a little bit about what happened to you.
François Couillard (02:16)
So a few years ago, I was sitting at the kitchen table with my wife on Halloween and I’d worked all day at my desk. I’d done some strenuous exercise in the morning. Like I do a lot of exercise. ⁓ And my wife is sitting on my left. There’s just the two of us around the table. And I turned to her and I say, it’s funny. I don’t see you that well.
I can see the world, but you’re a little bit, I can’t describe it. It’s just difficult to explain, but I just don’t see you well. Now I happened, and she said, you look fine and everything. happened to, at that point I was working with the Canadian Association of Optometrists. My role was CEO of the Canadian Association of Optometrists. So anything site related, I’m gonna call an optometrist. I’m not an optometrist myself.
Diagnosis and AftermathSo I called the president of the association. had just talked to him an hour or two ago. I said, hey, ⁓ I’m having this thing there. Should I worry? And he said, well, it could be one of two things. You’re either having a ⁓ migraine headache or you’re having a stroke. So go lie down for half an hour. And if it’s still there, head to emergency.
So that’s why I did not lie down for half an hour. I stood up and told my wife and that’s still there. We live five minutes from the hospital from a nice large tertiary care hospital. So she took me straight there. I was full of energy just like I am now bubbly, no pain, just this funny thing. So I walk in the emerge and I tell them, you know apparently I’m having a stroke with the looking at me and it’s like, you don’t look like you’re having a stroke, but okay. ⁓
So they got me through fairly quickly, maybe half an hour. They triaged me in. ⁓ they asked me all sorts of questions and, ⁓ I got the CT and came back and said, yeah, you had a stroke. So I, ⁓ they, they gave me a rain check. I walked back home in the middle of the night and, ⁓ I almost got lost cause my site was so bizarre. I couldn’t have my bearings. So I went back home and.
Then I started having a pretty bad headache and ⁓ that’s it. That’s the start.
Bill Gasiamis (04:45)
I was going to say that sounds very uneventful, but then they sent you home.
François Couillard (04:49)
Yeah, they just sent me home. Yeah. Yeah.
I had no other symptoms. Everything else was functioning. I could touch my nose. I could do everything. So they said you had that episode, you zapped a piece of your brain and now go home.
Bill Gasiamis (04:52)
What a nerd he is.
François Couillard (05:06)
the interesting thing which I learned after the fact, if you have another type of stroke, whether you become paralyzed to a certain extent, quickly they put you in touch with people that will help you with rehab, right? You’re going to have physiotherapists and all that.
And in this case, no, they were kind of happy that they, was out of danger, it’s a large emerge. So they’ve done their job. I’m not dying. And, but as far as treating what happened to me, which I actually lost a quarter of my field of vision. So I’ve got quadrantinopia. They said, go and get a field of vision, a proper field of vision test and get that done by an ophthalmologist.
And to argue with them, know what, optometrists can do that too, and I can get the appointment next day. Australia and Canada have pretty similar scopes of practice for optometrists. We’re lucky in the States as well. Other countries, it’s typically ophthalmologists, but in our countries, we have good optometry. So, anyhow, the next day I had an appointment with an optometrist, and I did the field test, and it showed, boom.
But then for the next several weeks, I personally figured out what sort of assistance I could get. Vision therapy. I got some help also to set up my screen so I wouldn’t get too much ⁓ glare and too many contrasts. So just getting that adjusted. And there’s organizations in Canada that help those that are vision impaired. And I was able to get in pretty quickly to get access to those people. I knew where to go.
But the system didn’t send me to any of that. And so that’s what prompted me to call you and share my experience because ⁓ unfortunately, for a minor, I call it a minor stroke for me. I was very, very lucky. ⁓ It seems that if it’s just a vision, there’s not too much out there. There’s not that much awareness that something can be done and should be done.
And we also need support. So that’s why I thought I could share my.
Bill Gasiamis (07:18)
That’s a great reason to share your experience. I’m still stuck on the fact that they sent you home. So if you’re having a stroke or had a stroke ⁓ and it was fresh, right? You were fine a few hours earlier. Now you’re having a stroke. You would think that the doctors would say, well, should we investigate the cause of this person’s stroke? It could still be an ongoing issue.
François Couillard (07:31)
Yep. Yep.
Right.
Well, they did some tests and blood work and all that and immediately they couldn’t find anything. It actually took them about eight months to figure out what might have happened. It was definitely a clot. And after a bunch of blood tests done by a very specialized neurologist, they discovered that I had a genetic mutation for prothrombin.
2 % of the population has that. I just happened to have that and also had a PFO. So it is possible and they found that I had little clots in my my low in one of my lower legs. So it’s possible that a clot left went on a field trip through my through my heart bypassed the lungs went straight to the brain. So that’s probably what happened. But no, they did.
They didn’t know for sure. Actually, when I showed up in eMERGE, and that’s the other thing, they were very poorly set up to diagnose and evaluate ⁓ site emergencies. ⁓ The guy that was like the resident that was assisting the emergency physician, I probed them while the emergency physician was out of the room. said, what do you think I have there? He says, it’s probably a retinal detachment.
And I said, I can’t be a retinal detachment just happening at both eyes at exactly the same time and exactly the same part of the world that is blocked. So that’s not retinal detachment. It has to be the brain. can’t be just the eyes. So, yeah. Anyhow, they saved me. I didn’t die.
Bill Gasiamis (09:20)
No, I love your nonchalant attitude. know, ⁓ it was a small stroke. I’m still here. didn’t die. Like I kind of get it. That’s a great way to be. And at the same time, there’s no such thing as a minor stroke. There is an underlying condition, a blood clotting disorder. There is a PFO, another underlying condition. And just on those two things, and I understand the blood clotting disorder may take longer to diagnose, but a PFO, it should be able to be diagnosed pretty rapidly.
even if it’s a day or two later. But I would have thought that there would have been an admission in that you would have been admitted into the hospital and I would have thought, this is a gentleman, he’s 63 years old, you are in the high risk category for a stroke, regardless of how you look, just because you’re 63, our risk of stroke increases. But ⁓ I’m still stunned by hearing those types of stories.
But also I’m not surprised because it’s not the first time. I’ve done 404 episodes, you it’s not the first time that somebody said to me the diagnosis was a shambles or I was sent home when I was having a stroke and I shouldn’t have been. It happens very often, not only in Canada, in America, in England, in Australia, all over the world, ⁓ people come from. And it’s just fascinating to hear that then,
You took it upon yourself to look into the support services that you needed, right? That reminds me of me. That’s exactly what I went through in 2012. So I had a bleed. The first bleed ⁓ was obvious. know, there was a, ⁓ in America, it’s probably the size of a dime, ⁓ shadow on my brain. The second bleed was six weeks later, about the size of a golf ball. And that blood was sitting in my head.
But if you looked at me, I looked completely fine on the outside. I didn’t have any visible signs that I was having a stroke other than the fact that cognitively I was a mess and I had fatigue and all the things that stroke survivors talk about. I couldn’t, ⁓ my balance was off. couldn’t communicate properly. There were so many issues. So they sent me home after three days after the second bleed, seven days after the first bleed.
They determined what the cause was roughly. They knew it was a blood vessel that had bled. They didn’t understand why. And then I went home unable to drive, walk, start, complete a sentence, remember who came to see me, ⁓ angry, ⁓ like emotionally unwell, all sorts of things. And no follow-up appointment to say you should go and see a
neuropsychologist, you should go and see this person for that, this person for that. And I went to a counselor, my ⁓ psychologist, and she realized that I was in a pretty terrible way as far as communication is concerned. And she said to my wife and I, maybe you should go and see a neuropsych. And I was like, okay, what does a neuropsych do? And she said, well, they’ll evaluate the level of your deficits. So not knowing that I could
François Couillard (12:16)
Yep.
Bill Gasiamis (12:41)
get a private appointment and see one immediately. I went to the public system and waited nine months to get an appointment with a neuropsychologist. Nine months. And by the time nine months came around, the bleeding had stabilized. And by then, deficits, my ⁓ neurological deficits had settled a little bit. And although I wasn’t back to normal, I was able to pass the neuropsychological assessment quite well.
François Couillard (12:48)
Nine months. Wow.
Navigating Recovery and SupportBill Gasiamis (13:09)
where they didn’t recommend any further rehabilitation. But I struggled at home for six or seven months trying to work out what day it was, what was up, what was down, how to write a letter, how to type an email, how to communicate. It was horrific. at the same time, Christine and I were trying to, my wife, we were trying to solve that problem by researching and trying to understand what happened, how it happened, et cetera.
And it was 2012, which meant there was no YouTube channel about stroke recovery. There was no, hardly any books that you could buy. You you couldn’t reach out to anybody. It was a really difficult time. It’s partly the reason why the podcast exists. So I’m still surprised, you know, not, you know, not completely, I’m not, I’m not naive enough to think that.
mistakes don’t happen anymore but even after 14 years like I’m still surprised that people go through this it shouldn’t happen.
François Couillard (14:11)
Yeah,
it’s ironic that I worked in the field of the eyes of vision. And the only thing that got affected on my stroke was my vision. This is really ironic. So I don’t know what happened in the other world there. But something happened. And but if I hadn’t worked in that field, it would have been very complicated.
Bill Gasiamis (14:23)
Yeah.
François Couillard (14:37)
I would not have known that there was a thing called vision therapy. I would have waited to see an ophthalmologist because I would have believed them when they told me that, no, to get a field test you have to see an ophthalmologist. ⁓ It would have taken me a lot longer to get the sort of accommodations, the appointment to get an accommodation for my screen and my
Bill Gasiamis (14:37)
Mm.
Mm-hmm.
BIll Gasiamis (15:01)
We’ll be right back with France, why Cool yard in a moment. If you found value in this podcast and you’d like to support the show, you can do that at patreon.com/recoveryafterstroke. Every contribution helps keep the show going and helps me get to a thousand episodes. And if you’re navigating life after stroke, yours or someone you love my book, the unexpected way that a stroke became the best thing that happened is available at recoveryafterstroke.com/book.
Now back to Francois.
Bill Gasiamis (15:32)
were saying the irony was that CEO of an organization that sells glasses and you are experiencing ⁓ a stroke and the only thing that was affected was your eyes.
François Couillard (15:45)
Yes, that’s the irony. So while it’s ironic, at the same time, it couldn’t have happened to anybody. I’m the ideal person for whom this could happen, because I know where to find the resources for anything related to site. So that was very helpful. I keep thinking if you…
I’m sure a lot of your stroke survivors have experienced, maybe not all, but some have experienced sight issues and they probably wouldn’t know where to go or they might not know that there are things that can be done to try to recover some of that sight through vision therapy. yeah, I was lucky to know what resources I could get, I couldn’t get access to.
Bill Gasiamis (16:25)
Nothing. Well, move.
Yeah, what was life like before strike? I know you say, that’s a busy ⁓ job, but what else were you up to back in the day?
François Couillard (16:38)
So
Vision Challenges and Cycling SafetyI, very active, hyperactive, very, quite athletic actually. I do long distance ⁓ cycling and I do ski, cross country ski races and I’ve skied all over Europe. ⁓ So this was, this was end of November. So I’m starting, I’m finishing my cycling season about to get into my, into my ski season. ⁓ And like two days,
The day after my stroke, took it easy, but the next day I was in my basement doing an hour on my bike. And like a week after I did a hundred kilometers on my bike in the basement and I didn’t venture outside. So it’s like, this is me. have to be very active and, and, ⁓ I’m, I’m, so that hasn’t changed. ⁓ I work, I took, I took a little break. Well, what I call a break, I worked three days a week instead of five days a week, right after my stroke.
Bill Gasiamis (17:36)
And as if a CEO only works five days a week, there’s no way you worked five days a week.
François Couillard (17:41)
So I dropped a three and my staff was incredibly, my staff and the board I work with were incredibly supportive. I told them, okay guys, you’re pretty much on your own. You can come to me for advice, but you’re gonna run independently. Just bother me if you need help. And I was pretty open with the people I work with. I interface, I didn’t hide the fact. I didn’t see a stroke as a sign of weakness, something that I should hide.
And as a result, I got a lot of support. I live in the healthcare industry. I work in the healthcare industry. So healthcare workers are supportive, friendly. They know how to give care, whether it be psychological care or physical care. So I got a nice extended support group. After a couple of months, I went back to five days a week. even though my physical stamina was great.
my mental stamina ⁓ struggled, you know, like many stroke survivors, I didn’t sleep that well for a little while, kind of hyper. ⁓ And ⁓ I was not emotional, I didn’t become ⁓ depressed. So I was lucky from that perspective. But my mental stamina, I couldn’t work for as long hours and the screen is tiring. And I told you I’m a cyclist. So that’s interesting because
If you want to be a safe cyclist, usually you go on a bike path. That’s the way to go. You stay away from traffic. Well, I hate bike paths now because my blind spot is one quarter of my field of vision and it’s here. And in Canada, when we ride our bikes, we’re riding this way and people coming the other way are coming this way. If I’m on a small bike path and it’s curvy and bikes come this way,
Sometimes I hear them before I see them. I see them at the last minute. And same thing happens when I ski. If it’s a narrow trail, someone might come at me and only see them at the last minute because I hear swoosh and then I look. So I’ve had to compensate, learn to lift my head a little bit more and not rely on my field of vision. So other than the mental stamina, other than that, I haven’t had any.
and the fact that I don’t see that well, I’m okay.
Bill Gasiamis (20:09)
Yeah. I have a ⁓ stroke survivor who I coach ⁓ once a month and he has, I think, top left hand corner or right hand corner, doesn’t matter, but I think it might be top right hand corner, ⁓ vision loss, field of vision loss. And he has a, on one of his eyes and he has a ⁓ prism thing like a little…
François Couillard (20:36)
Yep.
Bill Gasiamis (20:37)
that he’s got
François Couillard (20:37)
Yep.
Bill Gasiamis (20:37)
attached to his glasses that when he’s driving brings the ⁓ vision from that side into the front of him. So you don’t have anything like that on your glasses.
François Couillard (20:44)
Cool.
Well.
Now I do have prisms, but that’s for a different reason. Actually, when I consulted with an optometrist to get vision therapy, they also at the same time, diagnosed and I had one eye that would see an object kind of here and the other eye would see the object here. So this therapy to try to realign that, but we didn’t get quite the full alignment. So she provided me prisms to realign that, but
Bill Gasiamis (21:08)
Mm-hmm.
François Couillard (21:19)
really this issue of not seeing in that top quarter, ⁓ it’s fascinating because all I have to do is scan once very quickly. right now when I look at the room, I see the whole room as if I had no sight impairment because the brain makes a picture, fills the void. As long as I took a look quickly once, the problem is when things move, it’s a moving picture. But that’s what’s so taxing.
especially in certain environments. If I’m in a social environment where the lights are very bright outside or I’m in a big room full of people with people moving, then the brain is working in overtime to try to fill that void, make that picture. And it becomes very, very tiring. It’s interesting. You don’t realize how much brain power the sight takes. I took a look at… ⁓
the neurologist showed me the CT slice that shows my damage. And it’s like a big thing like this. It’s a big oval shape of destroyed cells, just cooked. Yeah.
Bill Gasiamis (22:30)
Yeah.
So driving is driving an issue.
François Couillard (22:35)
I can drive, but I drive like a 90 year old man. So I stop at every sign and I look four times and okay, then I venture as long as, when I’m moving, I’m okay. It’s intersections I don’t do well. Yeah.
Bill Gasiamis (22:50)
In Melbourne, in Australia, we’re known as being really impatient. You would be a nightmare in one of our…
François Couillard (22:56)
I
get honked at. I’ve never had that before. They honk at me and I say, ⁓ too bad.
Bill Gasiamis (23:02)
Yeah, yeah.
The Impact of Stroke on Daily LifeAnd that’s the thing. It’s a great thing that you mentioned that because I actually made a very concerted effort in November last year. I said that I was going to no longer be angry, aggressive and yell at people from my car when I’m driving. And I’ve and I’ve made, put so much work into not doing that. And I’ve had to re-remind myself when I’ve caught myself.
François Couillard (23:21)
Good for you.
Bill Gasiamis (23:29)
jumping out of the correct way to behave. And then I even correct my wife who’s very calm and collected compared to me, but I even correct her now. You don’t know what’s happening to that guy. Maybe there’s just practicing more or they’re paying attention more or they’re trying to navigate something. even though I’ve done so many podcast episodes and so many people have told me about the vision issues and that they’re trying to get their driver’s license back.
It still doesn’t occur to you, to me when I’m driving, when I’m a hothead Melbourne driver, it still doesn’t occur to me that, just take it easy. If they’re going slow, they’re probably paying more attention or being more careful or whatever the situation is. It doesn’t matter. It’s not going to make a difference to your life if you just wait a few more seconds to get through. ⁓ But I totally get how now they would be, people would be honking you.
and trying to move you along thinking, what is this guy doing? And having completely, being completely ignorant about the fact that ⁓ different people are visioned differently, and drivers are also visioned differently. And that changes the way that they have to behave on the road. Was there an assessment that was done to ensure that you could drive or was that not even a thing?
François Couillard (24:48)
No, it was not even a thing in Canada. can legally drive with this. There’s a certain I can’t remember what the criteria is, but there’s a criteria in terms of I think the height of ⁓
the level at which you can see and maybe it’s a percentage, but I met that they were more concerned about the cognitive ability. So they had me do a test of cognitive ability ⁓ and I passed that. for 30 days I couldn’t drive and that was more to keep me in check in case I have another stroke right after. that was just, yeah, so that 30 days and then they said, no, you’re good to go.
I feel more at risk. Yeah, I feel more at risk on my bike than I do in a car. Because it’s more dynamic, it moves and moves all the time. So again, try to avoid bike paths, but there’s places we can ride around here where there’s no cars. It’s roads that are close to traffic. And we can we can ride our bikes or run or I do also roller skiing.
Bill Gasiamis (25:33)
Yeah.
Yeah, fair enough.
François Couillard (26:00)
I know they do that in Australia quite a bit, roller skiing. So we do that there. it’s why the worst thing you worry about is hitting a deer or a bear, but no cars.
Bill Gasiamis (26:15)
Everyone talks about how Australia is dangerous. A bear. You’re going for a bike ride and your biggest worry is you’re going to hit a bear. I don’t have to think about that when I go for a bike ride.
François Couillard (26:19)
Yeah. Yeah. Yes, that happens. I see
about, I see two a year or so, you know, through the summer and fall. Yeah, but they’re normally on the side of the road and, you know, they don’t purpose, they don’t go in the middle of the road.
Bill Gasiamis (26:31)
That’s too many there.
I know, every movie I’ve seen though, that’s what they do.
François Couillard (26:39)
No, no, it’s and we have ⁓ brown bears, black bears. We don’t have grizzly bears here. They’re the other part of the country. And the polar bears are up north here. They’re not so dangerous. Well, they’re still dangerous, but.
Bill Gasiamis (26:50)
the
the the brown bears the crazier ones or is it the black bears?
François Couillard (26:55)
The crazy ones are the grizzly bears, right? yeah. Yeah, we have, I think it’s the black bears we have here. I’m not a biologist, I apologize. They’re big, have fur.
Bill Gasiamis (26:59)
huh. Okay. Yeah.
Yeah, we don’t have large animals like that that will ⁓ kill you. We have little tiny animals that will kill Spiders, snakes, we have little animals that you can’t see that you only know they’re there after they’ve bitten you. ⁓ But we’re still doing all right here. We still seem to be able to survive. your and before I get to my next question, I just need to ask this. can’t.
François Couillard (27:14)
Oh, I know, it’s crazy, yeah. Yeah.
Bill Gasiamis (27:36)
Do you do the whole full Lycra gear when you go out for a bike ride? you a Lemel?
François Couillard (27:40)
Yeah,
full Lycra both on cross country skiing and in cycling. Yeah, full Lycra. Yeah, sorry. Yeah. We take ourselves very seriously. It’s like putting your Superman disguise and you go way faster. It’s just more comfortable. Really, it’s a matter of comfort, especially in the winter, cross country skiing. As soon as you start sweating, you freeze. So you have to have just the right…
Bill Gasiamis (27:49)
Yeah, no, that’s okay. I always
I hate you.
Uh-huh.
François Couillard (28:10)
You have to
have something that’s very breathable yet cuts the wind somewhat for when you go downhill. It’s a real science. Yeah. Yeah.
Bill Gasiamis (28:18)
I don’t doubt it. don’t doubt it. The problem is
the Simpsons put Flanders in a tight bodysuit skiing once and they showed off his butt and now the only thing I ever come back to is that image of Flanders doing that. So that’s all. That’s all that is. I love it. In Australia, we call people like you mammals.
François Couillard (28:26)
Yeah
Yeah, yeah, yeah, yeah, yeah.
man in Lycra or? Yes, yes, we have the same thing here.
Bill Gasiamis (28:42)
mutilates in in Lycra.
Yeah, I love it. love it. Now,
you seem very upbeat and I love it. It is actually fantastic to have this conversation with somebody who had a stroke and things went so well, all things considered. And did you have moments where this kind of hit you another way? Like you didn’t feel…
François Couillard (29:02)
Yeah.
Bill Gasiamis (29:12)
Good about this where you thought, my gosh, what happened? It’s a stroke. I’m 63. Like, did you have any of those moments?
François Couillard (29:13)
Yeah.
Well, a couple days after my stroke, had a really bad headache, really bad. So I called the 911, the ambulance came and I said, okay, you guys, should you take me back to the hospital? I need to? And is there something bad happening here? They said, well, depends. How do you feel? Would you like to go back or do you prefer to stay? I’m no expert.
Finding New Connections and BalanceI said, well, okay, I’m just gonna stay here. ⁓ I didn’t know I could take a painkiller for my headache. So I took a painkiller and it went away slowly. ⁓ Afterwards, ⁓ was more, I was never down ⁓ because I, yeah, because I felt, I didn’t feel that bad. And
But the uncertainty around figuring out what happened and could it happen again and how quickly could it happen? I think stroke survivors all struggle with that. ⁓ I pushed back when they wanted to give me statins and blood pressure pills and blood thinner. I pushed back and said, I don’t know, need that. But then they said, come on, put all the chances on your side, take the drugs. And I took them, no side effects. ⁓
And, ⁓ no, I don’t, I don’t feel sorry for myself. And maybe it’s cause I’ve, I’ve seen a lot worse. heard your podcast and seen people in much worse conditions. And in terms of sight as well, I’ve, I’ve seen in optometry, there’s all sorts of conditions where you completely lose your sight. And so it’s not that bad. And what am I to complain about? And I can still do pretty much all my daily activities. I just need to pace myself. As I said,
neurologically still. So I don’t, I mean, if I felt sorry for myself, it wouldn’t be of any use to anyone. So no, I think overall I’ve been, I’ve been lucky. I, but I was watchful. I was kind of observing myself saying, okay, I hear that I might get depressed and maybe I’ll have a little bit of a depression here. But so I was watching and, ⁓ but it didn’t happen.
So, but I think keeping my exercise routine, staying engaged at work, ⁓ had good support from my friends. Initially, I couldn’t do too much. So I had time to spend more time with my friends that I had, that I always, because I had such a busy life, I didn’t spend that much time just enjoying an hour chatting or something. So I started doing that again. And I…
as you say in your book, which I really liked and I liked the concept, having a stroke really, was not something that set me back. It’s something that provided me a new perspective, new experience in life and brought me to a new place. And I’ve learned so much that I would have never learned if I had not had a stroke. So in a way I was sent this thing and
It’s a nice, it’s an interesting experience. haven’t yet died from it. might, maybe something will happen. I get another stroke but I’m not going to worry about that until it happens.
Bill Gasiamis (32:41)
Mm-hmm.
I like hearing this version of it. It’s because I’m the same guy.
François Couillard (32:48)
Yeah,
no, I was reading your story and I felt this is is how I feel. Yeah.
Bill Gasiamis (32:53)
Yeah,
and I live with it every day and the neurological fatigue is still there and the deficits are still there and all that type of thing. Now I am quite mobile, I’m independent and all that kind of stuff, so I understand the difference between my experience and some other people’s experience. I totally do. And I don’t want to take away from how they are going, how they’re feeling and what’s happening to them. I don’t want to minimize their experience. I just want to say, you know, like,
If you can find a way to be more like my attitude, not like me as a human being, but just my attitude, know, Francois’s attitude, it’s like, it doesn’t help, it doesn’t harm, it only benefits. And I don’t know how it’ll benefit you, but it will definitely benefit you in a small way. And that might create a snowball effect of more and more benefits that you never expected that you were going to have. And that come your way.
and that make life more interesting to observe and experience, even though it’s hard, even though it hurts, even though it’s exhausting, even though it’s challenging, even though you have less independence. Whatever the situation is, if the attitude changes just a little bit and you think about it like this is another experience that I have to go through, I have no choice, what can I learn from it? How can I grow from it?
you will learn from it and you will grow from it and you will probably make your life better and the other people around you their life better as well. And that’s the whole reason why the podcast exists. I hope that that’s the message that people get, not me telling people, this is what you should do, know, do it the way I do it. I don’t want to, I don’t want to put it out there like that. ⁓ Now, also I’ve met people who have had a stroke and have had very minor
deficits from it. One particular stroke survivor who I met was ⁓ also a client of mine who I was coaching who had a, who was very athletic, ⁓ used to ride a bike a lot. He ended up getting a numb sensation in his, one of his feet as the final deficit that never went away. And it was about the size of a golf ball. And it was the most
difficult thing for him to deal with. He couldn’t grasp how much of an issue he was making it, like in his mind he was overthinking it and it was causing him anxiety etc and he couldn’t settle down the overthinking mind. And we were working together just so that I could get him to the point where he could focus on
the entirety of the rest of his body and the fact that he was still back on his bike and riding and doing a hundred kilometers and all those crazy things. And it was like, ⁓ I’m not sure how to bring you back there. You know, how to develop your understanding of how well you are after the stroke. And we got there and we’ve been able to move beyond that phase, but
he was really struggling just with the fact that that one part of his foot felt different and he was always noticing it. You know my entire left side feels different and I always notice it and it makes there’s no benefit to notice it more often so I kind of
François Couillard (36:31)
You know, I
can kind of understand him. ⁓ If you’re a high performance cyclist, which you might have been, ⁓ you become acutely aware of every little pain point. It could be your butt, could be your neck, top of your neck, back of your neck, could be your shoulders, could be your hands that go nimble. in order to do the sport you love and perform, you have to keep
Bill Gasiamis (36:36)
Tell me.
François Couillard (37:00)
all these little pain points in check or else they get worse. it and you’re so focused on your exercise that you think about that all the time. It is really nagging. So I can I can understand him in a certain way. I know in the big picture, nothing. But if that activity is a big part of his life, I can see that it could be really annoying.
Bill Gasiamis (37:25)
Yeah, I like that perspective. I appreciate you saying that because I was connecting it not to his bike riding. We never spoke about it from the perspective of bike riding. We spoke about it from the perspective of everyday life. When I’m not, et cetera, I’m noticing it. It makes me think of my stroke. makes me think of maybe having another one and all that kind of stuff. So if he had given me that version of it as well, it elaborated a little bit.
François Couillard (37:37)
Okay.
Okay.
The Importance of DowntimeBill Gasiamis (37:54)
that would have made more sense. And then we would have been able to work ⁓ with how do we incorporate that feeling as being normal, for lack of a better word, in a cycling situation. And it’s not something that he then has to focus on ⁓ on the ride. It’s just a different feeling. It’s not related to the cycling. Let’s ride.
François Couillard (38:15)
Mm-hmm.
Right. It’s not a yes.
I think that’s a useful perspective.
Bill Gasiamis (38:24)
Yeah, it’s so interesting ⁓ to have your feedback from that. That’s so good because that’s closed the loop for me that opened about four years ago.
François Couillard (38:36)
Yeah.
Bill Gasiamis (38:37)
⁓ So you really enjoyed this opportunity where you had more time to connect with your friends and have conversations.
François Couillard (38:42)
Yeah, yeah.
And at the same time, I drop off a few things. I was overstretching myself between work and volunteer activities. And there’s one activity particularly that took me one evening every week and a lot of emails every day. And I told the group there, said, you know, guys, if you don’t mind, I need to get out of that. It’s too much for me. so I
I now had a kind of a reason to be able to say to give up something and clean up my act and focus on what was more important, which I should have done before because I was already overstretched, but I didn’t because I had a felt it was my duty or I’m enthusiastic. I want to let people down. So yeah, that was that was useful. Yeah. And connecting with the friends.
But what I found is as I got my energy back, and as you can tell, I’m pretty high energy, as I got my energy back, then I got back to my old, I’m too busy. I’m doing a lot of things now and I don’t have as much time for friends. I do have a bit more now because I retired in December. So now I have more time again. But ⁓ yeah, it’s a learning journey.
Bill Gasiamis (40:02)
Yeah, it is. And I found myself in a similar situation where I do the podcast Fridays and Saturdays, sometimes Sundays. ⁓ And that means that if I’ve got work Monday to Friday, if we’re busy Monday to Friday, Saturday and Sunday is the full days as well, recording, editing, uploading, all that stuff. So there’s no downtime. And sometimes I have to get out of this little shed in the back of my ⁓ yard.
which is my recording studio, and I actually physically have to just go, I’m going for a walk so that I can get a break. Otherwise I’ll be sitting here for seven hours solid.
François Couillard (40:41)
Well, that’s crazy. No, yeah. Yeah.
Bill Gasiamis (40:43)
It’s too much. And I do
that. And I could do that six or seven days a week. And as much as I enjoy it, I do look forward to someone breaking the cycle for me. So I didn’t have to have the responsibility to do it myself. My wife will say, are you going to be there all day? I’m like, where do you want to go? And she’ll say, want to go. Okay, let’s go. One hour. Can we do it in one hour? Yes. Bang. We’re out. Yesterday, a friend of mine called me and said to me, why don’t we go for a walk on Sunday? And I thought,
François Couillard (40:56)
Yes.
Bill Gasiamis (41:12)
Okay, perfect. Where do you want to go? He said, we’ll go down there and we’ll walk. I said, great. Let’s do it. I’ll be there at your house at midday and then we’ll go for a walk. So if somebody doesn’t interrupt me, I could go for another six or seven hours. And yesterday, my wife went out, today’s Saturday morning. Last time my wife went out with her friends that had dinner. And because I knew that she wasn’t going to interrupt me, I literally sat
François Couillard (41:19)
Good.
Bill Gasiamis (41:41)
in here doing work, editing videos, ⁓ connecting with my VA, having meetings, etc. for ⁓ from about 8.30 in the morning till around 7pm. I got out for about 45 minutes, maybe twice. It’s I know it’s not healthy. I totally get it right. And it’s what you say about over
François Couillard (41:57)
Ugh.
That’s not healthy, you know that Bill. Yeah. Yeah.
Bill Gasiamis (42:10)
What’s the word?
François Couillard (42:11)
extending yourself or committing.
Bill Gasiamis (42:13)
I very yeah, or I have a focusing or I have a fixating, which is something I couldn’t do many years ago because of the stroke. So I’m kind of grateful that I can do it. But I say that because you probably as a CEO, one of the busiest jobs out there was still able to do your 100 kilometers often. Right. And people like me will say, I don’t have time to go to the gym. don’t have when I say people like I’m actually talking about
François Couillard (42:16)
Yeah.
Mmm.
So I’ll tell you what I did and I still do it.
I’ll tell you what I do. I, when I was working, I get up early 5:30 or something like that. And at 6:30, 7AM on my, I’m on my bike. I ride about 50 kilometers and I grab a coffee in the countryside and the same coffee shop every day. And I see folks there and I come back and I’m back home around nine and I started my work. So before I even started my day, I
took care of my exercise and I had some social interactions with people. And I’m kind of on this, I’m full of endorphins from my biking and then I dose myself by adding a bit of coffee and I have enough coffee just to get in the right space where I’m not too hyper and I still have the effects of my endorphins and I run through the day like that.
Bill Gasiamis (43:21)
Mm-hmm.
It’s a science.
François Couillard (43:36)
It’s a science, yeah, it’s an art. Yeah, so that’s how I did it. And I still do my rides in the morning and I meet people at coffee and I come back. So I do both. get, it’s not just exercising. You need to have that social interaction. I find that so important, that human interaction and connection with people on a daily basis, on a daily basis, right?
Bill Gasiamis (43:40)
That’s the only thing Mr. Frenzy-
I do love that.
In the evenings, I like to go out. And you what’s weird in the evenings is as we age, my friends tend to be dozing off, you know, at 9.30, 10 o’clock. And I’m like, yeah, and they’re on their way home. And I’m like, ⁓ God, we’ve to go home early again. ⁓ To me, it’s too early to be going home at 9.30 and 10 o’clock.
François Couillard (44:03)
Okay.
I’m one of those.
So I have friends, they like to invite a little group of us for dinner. They invite us for dinner at four. Four. So like at 4.30, we’re starting to have dinner. all athletes. Some of them do triathlons and like at 7.30, we’re gone and we’re in bed at nine. But you know, we’re up at five and we’re very active during the day. But yeah, we’re boring. Slow in the car and early in bed.
Bill Gasiamis (44:40)
Yeah. Yeah.
Yeah, so I’m not up so early. So I know that at 5.30, you’re not setting an alarm. You’re probably just waking up naturally. It’s your time, know, 5, 5.30, especially if you’ve been in bed between 9 and 9.30. That kind of makes sense. That’s the right amount of hours to get out of bed. So it sounds weird for people that, oh my God, you get up at five o’clock and you go for a ride or you go to the gym. It’s just part of the normal cycle. It’s my cycle starts a bit later. So I’m probably
François Couillard (45:01)
Yeah.
Yeah.
Bill Gasiamis (45:22)
my brain, I’ve noticed the last two or three days, especially with a cold, I’ve noticed my brain isn’t switched on until around nine o’clock. Like it’s taken me an hour and a half, two hours for it to actually kick in. And I can’t do anything anyway. I would have probably been better off being at the gym or at Pilates, which is something that I am going to start. There is a Pilates near my place. And I’m thinking of starting that because going to the gym makes
my left side which is tighter even tighter so you know when you go to the gym and you get that muscle ache the next two or three days my left side feels like that all the time anyway and going to the gym kind of exacerbates it and just makes it less
François Couillard (45:56)
Mm-hmm.
Impact of Stroke on Daily LifeBill Gasiamis (46:04)
⁓ more annoying and even though my left side is kind of not as there’s not as much muscle as there is on my right side I’ve been avoiding going to the gym and feeling really tight and stiff because then it puts all my all my back out all my body out and then I’ve got to go get massages it’s one thing after the other so thinking I’m gonna go and start Pilates it’s warm Pilates
They put you in a room on a machine with another 20 people or so and there’s an instructor and they just take you through some exercises. It’s light, it’s gentle. And I feel like that’s going to be the thing for me.
François Couillard (46:42)
Do
you do do you do cardio at all? Like bike or?
Bill Gasiamis (46:45)
⁓ I do bike
but not so often. I have an electric bike, ⁓ an e-bike where my left leg when I pedal ⁓ doesn’t fatigue. So I bought it because I used to enjoy a bike ride and I would jump on the bike on the weekend and go for a ride. And after the strokes and surgery, my left leg gets fatigued within about five minutes. And then
François Couillard (46:59)
Okay.
⁓
Bill Gasiamis (47:14)
getting back from wherever I’m going is a real problem. Getting there is okay, but getting back is real problem. And then it becomes really painful and tiring. And then my hand starts to feel numb and can’t hold on to the handlebar correctly.
François Couillard (47:19)
Okay.
Yeah,
yeah. So you can’t, you’re not able cardiovascularly to get into that endorphin generation ⁓ mode where you would then get filled with these endorphins and that might remove some of the pain on your left side. Yeah. Yeah, that’s tough. Yeah. Yeah.
Bill Gasiamis (47:44)
So I’ve got to push through that hard part to get the endorphins.
Yeah. So, and what happened
when I first started writing, I’d fall off my bike a fair bit because I had, ⁓ I had stirrups because my left foot would fall off the pedal. So I’m not a professional rider. So I just had a regular bike and my left foot would fall off and then the pedal would damage my shin and it would be a nightmare. So I got a stirrup and then I would ride with the stirrup. then when I got to a stop,
François Couillard (47:55)
Ouch.
Okay, yeah.
Bill Gasiamis (48:18)
My left leg is the one that I normally put down to ⁓ rest, to wait, to go forward, but my left foot would be in the stirrup. My brain wouldn’t remember that it was in the stirrup and then I would fall over at the lights. So that kept happening. And that’s when I got the electric bike because now my left leg doesn’t have to overexert itself to push and pedal. The motor helps up until 25 kilometers per hour and then
François Couillard (48:29)
Yeah.
Yeah. Yep.
That’s smart.
Yeah.
Bill Gasiamis (48:48)
and then I’m done. I go for my ride. I connect with, you know, what I love, the freedom, the movement and all that kind of stuff. I go into the city. I have a coffee and then I ride back. It’s about a 20 kilometer round trip and then I’m done. You know, it takes about three hours and I’m done.
François Couillard (48:49)
That’s great.
That’s great. That’s great.
That’s great. Listen, I want to tell you as well, one of your, as I was right after my stroke, was searching for information and I stumbled on, ⁓ I researched loss of sight from stroke or something like that. And I stumbled on one of your podcasts where you interviewed this woman, I forget her name, but who had experienced something similar. It was mainly sight loss, but for her it was bad.
Bill Gasiamis (49:09)
Thanks
François Couillard (49:33)
But it helped me anticipate what I might go through afterwards. Like she couldn’t go in the car, she’d get nauseated and all that. ⁓ And having that experience that I could go back to ⁓ helped me put things in perspective and again saying, okay, my case is not that bad, there’s a lot worse. ⁓ I should consider myself pretty lucky. ⁓ So yeah, every little thing you do, all these podcasts, are
Bill Gasiamis (49:58)
Hmm.
François Couillard (50:03)
I’m sure they’ve touched and you’ve had testimonials to that, but I’ve touched a lot of people worldwide. So thank you for what you do.
Bill Gasiamis (50:10)
Yeah, my pleasure. You know, there’s been over 1,200,000 downloads just on YouTube.
François Couillard (50:17)
Wow. Wow. Congratulations. What an impact.
Bill Gasiamis (50:18)
Yeah, it’s fantastic. And it’s still
not enough. It’s still not enough. We need to get it out there. That’s over 10 years, right? So it’s still not enough. We need to get it out there. I need people to share and people are doing great work. I people to comment. I need people to like, I need people to do all of that kind of stuff, interact in any way that they can. And they are, and it’s brilliant and I love it and it works. ⁓ You know what’s amazing? If people are watching and there’s an ad, if they don’t skip it and they
François Couillard (50:25)
Yeah.
Yeah.
Bill Gasiamis (50:47)
I make a few dollars that enables me to pay for all the things to keep it going. The book, that’s the purpose of the book. All the money that this thing makes just goes back into keeping it going, paying my VA, paying for hosting, paying for all that kind of stuff. And I think it gives me something to do on a Saturday and Sunday, Francois. It is just the most amazing thing that’s come into my life that helps me get through. Sometimes I have bad days and I don’t want to do it anymore. Very few of those, but…
François Couillard (50:49)
Good.
Yeah.
Understanding Stroke and Its MisconceptionsBill Gasiamis (51:16)
⁓ Most of the time, the reward and what I get back from it is amazing.
Yeah. So thank you for saying that. I really appreciate it. I’m glad that it helped you. Tell me about your family a little bit. How did they react to your whole situation with the stroke and all the things that came after?
François Couillard (51:23)
Thank
My wife was, I’m married, we have a son, our son lives, lived in the States in those days now, he’s back in Canada. Of course, they were worried. My wife knows me, she knows and I tend to underestimate the, well, overdo things and poo poo risks and issues and I have a pretty high pain threshold.
So she doesn’t fully trust me when I tell her that things are okay. So I think she worried more than, ⁓ than she showed, but she was always there for me, very supportive. the one thing that was difficult is, getting her to, you know, as we sit at the kitchen, we have all our meals together. So we’re sitting and having a meal and she wants to share something. And especially when I was still working, ⁓ I just had nothing left in my brain to listen to her with empathy.
and she would get annoyed and I had to explain, it’s not you, it’s just my brain is fried, my brain is in ⁓ overdrive, the best thing, just accept it and that was tough on her, that was really tough. ⁓ So yeah, and I discovered a lot of people didn’t have a good understanding of a stroke and to this day people…
think I have a problem with my heart. Well, I have PFO, but 40 % of the population has a PFO. So that’s nothing. But people always ask me, how’s your heart? Well, I don’t have a problem with my heart. You know, it’s the brain. Well, it’s something that went to my brain. So a lot of misconceptions on what strokes are. In Canada, it might be the same in Australia, but there’s an organization called the
Well, the big charity is the Heart and Stroke Foundation. So they bundle together heart and stroke. So maybe that’s part of the confusion.
Bill Gasiamis (53:35)
Absolutely, that’s got to be that makes complete sense. What you said about your brain being fried, it is a absolute 100 % accurate description of what you’re saying because that’s, I get to that point still where my brain’s fried and all I can hear is just noises in the background and there is no computation in my brain. Nothing works. Nothing is happening.
François Couillard (53:36)
Yeah.
Bill Gasiamis (54:03)
You could be going on about something and I’ve got no idea. And that is such a strange thing to try and have a conversation with a normal person about, know, because often they’ll say, ⁓ you know, I get tired too sometimes. Or I know, I know when, you know, your brain’s fried. It’s like, you don’t know this level of frying. This is the next level. And I never want you to know. I wish you never find out. ⁓
François Couillard (54:25)
Yeah
Bill Gasiamis (54:32)
and I could have an inbox full, I could have the most important job that needs to be done. It will not get done at that time when my brain is fried. There’s no happening.
François Couillard (54:39)
No, no, and sometimes,
sometimes, you know, just I know I have this one email I need to send or I need this one little thing I need to do. And it’s just my brain has reached a tipping point. No, I cannot take anything more. ⁓ And in interactions like that, it’s it’s tougher because you’re trying to be nice to people.
Bill Gasiamis (54:57)
Yeah.
Yeah, I still get the odd, ⁓ strange look from my wife when we’ll have people over and I’ll just go and sit on the couch away from everybody, just daydreaming, trying to recover because a lot of noise, a lot of people, a lot of that just overstimulates me and I’ve got to go to the side and she’ll look over at me as if she’s saying, you’re so rude. I’m not being rude, my brain’s hurting. I to go over there.
François Couillard (55:27)
⁓ well, it’s great you allow
yourself to do that. Now you’ve got the wisdom to do that. Yeah. Yeah.
Bill Gasiamis (55:32)
Yes. It just gets so hard not to. It gets much harder to
be there. And then I go and reach out.
François Couillard (55:37)
People know, so
I tell people, say, you know, most, well, all my friends know I had a stroke. if I tell them, say, you know, we won’t be staying late. This is always tiring for me. So and they understand and it’s not a problem.
Bill Gasiamis (55:54)
Yeah. I also want to, as we wrap up, want to talk about that point that you made about your wife not fully trusting you and your high pain threshold and tolerance. That’s actually a very important thing because you could be going through something more serious. And because you’re a bike rider who rides for hundreds of kilometers and pushes through pain pretty much that entire time, you could definitely be underplaying
François Couillard (56:13)
Yes.
Yes.
Mindset and Recovery After StrokeBill Gasiamis (56:22)
the seriousness of what’s happening to you. And then other people have to kind of guess. You might have even gone to the hospital behaving like a completely normal person and downplaying the whole thing and then just them having to guess.
François Couillard (56:29)
Yes.
Absolutely. Yep,
it’s a risk. Absolutely. But there’s nothing I can do about it. I’m not gonna, it’s who I am. It’s how I am.
Bill Gasiamis (56:47)
Yeah, so it’s good to have that other person kind of on the side, just bringing you into awareness of that every so often.
François Couillard (56:48)
Yeah. Yeah.
At the same time, she’s kind of giving up on me. She knows I don’t listen. that’s the problem with spouses. Over time, we unfortunately tune out, which we shouldn’t. We should always listen attentively, of course.
Bill Gasiamis (57:11)
Yeah, I think she’s more intelligent than that. She’s just learned to stop having that endless argument with you that never gets anywhere, but she knows really what you’ll like. She knows you better than you know yourself.
François Couillard (57:16)
she’s very intelligent.
Yeah, you got it.
You got it. Yeah.
Bill Gasiamis (57:28)
I love it. Francois, I really appreciate you reaching out. I’m so glad that you get something out of my podcast that you appreciated my book, that it has made a difference for you in your recovery. It is lovely to connect with people who have your approach so that we can put it out there and then other people can hear that there is more than one way to do stroke recovery, like in the way that you think about it rather than
François Couillard (57:34)
Yeah.
Bill Gasiamis (57:55)
I get the physical parts and the deficits, I totally get that part. But just in the way that you can alter your mindset and think about it, my first chapter is the mindset chapter. I think it is the most important part of recovery is somebody’s mindset. And regardless of how bad their stroke ⁓ has impacted them and their deficits, if we can get the mindset on the right path 90 % of the time, I think there’s going to be a better outcome for that person. And I say that.
because I always remember Stephen Hawking, the great physicist who was completely disabled ⁓ from the neck down from murder neurons disease, Lou Gehrig’s disease or whatever else they call it, and still had a fully, totally active life in the highest level of his profession and was still considered one of the greatest physicists of all time. And
And I think that his mindset amongst other things would have definitely had something to do with how active he was even though his body had completely ⁓ not been able to support him.
François Couillard (59:07)
Mm-hmm. Yep, I totally agree.
Bill Gasiamis (59:10)
Well, on that note, my friend, thank you for joining me on the podcast.
François Couillard (59:14)
Thank you, Bill. It’s been a pleasure. And thanks again for all the amazing work that you do for all the stroke survivors around. Thank you.
BIll Gasiamis (59:22)
Well, that brings us to the end of another episode of the Recovery After Stroke podcast. I to thank my guest, Francois, for reaching out and joining me on the show.
What he shared today about being turned away at the emergency department, about living with vision loss that nobody around you can see, and about returning to lead at a national level is going to matter deeply to people who have had their own symptoms dismissed or who are carrying the invisible side of stroke every single day. If this episode resonated with you, subscribe to the Recovery After Stroke Podcast wherever you get your podcasts. And if this show has helped you,
A review goes a long way. It helps more survivors find us. My book, The Unexpected Way That a Stroke Became the Best Thing That Happened, is available at recoveryafterstroke dot com slash book.
and if you would like to support the show, you can do that at patreon.com/recoveryafterstroke.
until next time, take care of yourself and keep recovering.
The post Sent Home Mid-Stroke: CEO of Optometry Canada on Vision Loss and Recovery – Francois Couillard appeared first on Recovery After Stroke.
Rebuilding Life After Stroke: Why You Can’t Go Back – And Why That’s the PointThere’s a moment in stroke recovery that almost every survivor reaches. You look at the person you used to be. Your job, your relationships, your body, your identity, and you realise something that nobody prepared you for: you can’t get that person back. The question is what you do next.
Greg Graham knows this moment intimately. An AVM (Arteriovenous Malformation), a rare tangle of blood vessels in the brain, changed the course of his life in an instant. What followed wasn’t just physical recovery. It was the hardest work of rebuilding everything from the ground up.
What an AVM Stroke Takes From YouAn arteriovenous malformation stroke happens when a cluster of abnormal blood vessels ruptures in the brain. Unlike ischaemic strokes caused by a clot, AVM strokes involve bleeding into the brain. The consequences depend heavily on where the bleed occurs, and for Greg, the impact was severe.
In the immediate aftermath, Greg found himself isolated. Six weeks of recovery largely alone. Relationships fractured under the weight of what had happened. The losses were not just physical; they were existential. The life he had built, piece by piece, was no longer available to him.
“I’ve lost everything. I don’t see a way forward.” This is the thought that lives underneath so much of early stroke recovery. It’s not self-pity. It’s the honest reckoning that comes when the gap between who you were and who you now are becomes impossible to ignore.
Why “Getting Back to Normal” Is the Wrong GoalThe dominant narrative around stroke recovery in hospitals, in rehabilitation settings, in well-meaning conversations with family is built around return. Return to work. Return to independence. Return to your life.
But for many survivors, this framing creates a wall they can never climb. The person they’re trying to return to doesn’t exist anymore. The brain has changed. The body has changed. The world has shifted in ways that can’t be reversed.
Greg’s insight, hard-won through the kind of experience that can’t be faked, is that rebuilding life after a stroke isn’t about restoration. It’s about construction. Not returning to a previous blueprint, but laying new foundations with the materials you actually have.
What Rebuilding Actually Looks LikeRebuilding after a stroke is rarely dramatic. It’s the accumulation of small decisions made under enormous pressure. It’s choosing to engage with rehabilitation when nothing in your body wants to cooperate. It’s finding a reason to get out of bed when the reasons that used to work have stopped working.
For Greg, the path through began with a fundamental shift in framing. Instead of measuring recovery by what had been lost, he began to ask a different question: what is actually possible from here?
That question is deceptively simple. But it’s the foundation on which real recovery is built. Because once you stop trying to recreate the past, you free up everything you have to build something new.
The Identity Question Nobody AsksOne of the least-discussed dimensions of stroke recovery is identity. Who are you now? Not in a philosophical sense, in a practical, daily, operational sense. If your work defined you, and stroke took your ability to do that work, who are you on a Tuesday morning?
Greg’s experience speaks directly to this. The construction of a new identity after a stroke doesn’t happen overnight. It isn’t a single breakthrough moment. It’s a slow, deliberate process of discovering what you still are and what you’re becoming.
This is why Greg Graham calls himself the AVM Superhero. Not because recovery was easy, but because naming what you’ve survived and choosing to carry it with you rather than hiding from it is itself a form of strength.
Listen to the Full ConversationEpisode 405 of the Recovery After Stroke podcast is available on all major platforms. Greg’s story is one that will resonate with anyone who has faced the impossible question of rebuilding when going back is not an option. You can also find more resources at Bill’s book, The Unexpected Way That A Stroke Became The Best Thing That Happened, a practical guide to recovery and personal transformation written from lived experience.
If this show has helped you on your recovery journey, you can support it at patreon.com/recoveryafterstroke.
This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
The post Greg Graham – AVM Superhero: How He Rebuilt Life After Losing Everything appeared first on Recovery After Stroke.
Does GABA Actually Help With Sleep? What the Research Says for Brain Injury RecoverySomeone in our community recently asked me about GABA for sleep. They’d seen it recommended online, understood that sleep was critical for their recovery, and wanted to know whether the supplement was worth exploring or just noise.
It’s a genuinely good question. And it deserves a proper answer.
In this post, I’m going to walk you through what GABA is, what the clinical research actually shows about its effect on sleep, why the blood-brain barrier debate matters (and why it might not derail the whole argument), and what the evidence says about the relationship between sleep and brain recovery. By the end, you’ll have enough to have an informed conversation with your medical team.
I’m not a doctor. I’m a three-time haemorrhagic stroke survivor who has spent years researching the science of brain recovery and interviewing hundreds of clinicians and survivors on the Recovery After Stroke podcast. What I offer is a careful read of the evidence, not a clinical prescription.
What Is GABA and Why Does It Matter for Sleep?GABA (gamma-aminobutyric acid) is the brain’s primary inhibitory neurotransmitter. If your nervous system were a car, GABA is the brake pedal. It reduces neuronal excitability, quiets cortical arousal, suppresses the brain’s primary arousal centre (the locus coeruleus), and modulates the HPA axis, the stress-response system that drives cortisol.
Most sedative medications work by amplifying GABA activity. Benzodiazepines, for instance, bind to GABA-A receptors to increase chloride channel opening, producing their calming effect. GABA isn’t doing something unusual here – it’s doing something fundamental.
The question with supplemental oral GABA is more specific: Does taking GABA as a capsule or powder actually produce meaningful neurological effects?
What Does the Research Show?Finding 1 — Oral GABA Reduces Sleep Latency (and EEG Can Measure It)A 2015 clinical trial published in the Journal of Nutritional Science and Vitaminology by Yamatsu and colleagues used EEG measurement, actual brainwave monitoring, rather than self-reported sleep questionnaires. One hundred milligrams of oral GABA shortened sleep latency (time to fall asleep) by 5.3 minutes compared to placebo.
That might sound modest. But for someone lying awake for 30–40 minutes each night, it’s a meaningful shift. Crucially, this was objective neurophysiological data, not a survey response. (PMID: 26052150)
Finding 2 — A 90-Day RCT Showed Improved Sleep Efficiency and MoodA 2024 randomised double-blind placebo-controlled trial published in the Journal of Dietary Supplements (Guimarães et al.) gave 200 mg of GABA daily for 90 days to sedentary overweight women also undergoing an exercise program. The GABA group showed significantly improved Pittsburgh Sleep Quality Index (PSQI) scores, significantly reduced depression scores, and improved heart rate variability, a marker of parasympathetic nervous system activity.
The HRV finding is particularly interesting. It suggests GABA may be doing something broader than simply reducing sleep latency – it appears to support the overall physiological state that makes rest restorative. (PMID: 38321713)
Finding 3 — But a High-Dose RCT Found No EffectHere’s where intellectual honesty matters. A 2023 Dutch RCT (de Bie et al.) published in the American Journal of Clinical Nutrition gave participants 500 mg of GABA three times daily, 1,500 mg/day total, and found no significant effect on self-reported sleep quality. Fasting plasma GABA wasn’t significantly elevated either, raising real bioavailability questions at that dose.
This isn’t a reason to dismiss GABA entirely. It is a reason to pay attention to the dose. The evidence base supports 100–300 mg, not 1,500 mg. Higher is not better, and the non-linear dose response is clinically important. (PMID: 37495019)
The Blood-Brain Barrier Debate — and Why the Gut May Be the PointThe most common objection to oral GABA supplementation is this: GABA is a zwitterion at physiological pH, meaning it has low lipophilicity and poor predicted ability to cross the blood-brain barrier via passive diffusion. So if it can’t get into the brain directly, how does it produce neurological effects?
The emerging explanation involves the gut-brain axis.
The enteric nervous system, your gut’s own neural network, has GABA receptors. When oral GABA activates these enteric receptors, it can signal the brain via vagal afferents without needing to cross the BBB at all. Think of it as a side door rather than the front entrance.
Supporting this: a 2024 RCT (Li et al.) found that a probiotic strain engineered to increase gut GABA production significantly improved objective sleep duration as measured by wearable devices, alongside reduced cortisol and suppressed HPA axis activity. The mechanism wasn’t direct CNS access – it was gut-brain signalling. (PMID: 39385735)
The BBB debate doesn’t negate the clinical effect. It changes how we understand the mechanism.
Why Sleep Is Not Optional in Brain RecoveryThis is the part that I think gets underweighted in recovery conversations — and the research is unambiguous.
A 2026 large retrospective cohort study (Muhtar et al., Sleep Medicine) matched over 35,000 stroke patients and found that post-stroke insomnia was associated with a 29% higher risk of post-stroke cognitive impairment and a 30% higher risk of all-cause dementia. The association with Alzheimer’s disease was also significant. (PMID: 41924789)
A 2024 observational study from Monash University and Alfred Health (Smith et al.) found that in stroke rehabilitation patients, poor sleep quality was significantly associated with higher fatigue severity and lower salivary BDNF gene expression. BDNF (brain-derived neurotrophic factor) is one of the primary molecular drivers of neuroplasticity. Less BDNF means a less receptive environment for the neurological rewiring that rehab is trying to build. (PMID: 38802847)
And then there’s the glymphatic system: the brain’s waste-clearance mechanism that is most active during deep sleep. Poor sleep means reduced clearance of metabolic byproducts, including proteins associated with neurodegeneration. This is not a theoretical risk. It is an active, ongoing process.
Sleep is not passive recovery. It is one of the primary mechanisms of recovery.
What to Do With This InformationHere are three practical steps if you’re exploring GABA for sleep:
-
Measure your sleep baseline first.Use the Pittsburgh Sleep Quality Index (freely available online) before you make any changes. Understanding whether you’re struggling with latency, duration, or quality will determine what you actually need to address.
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If you trial GABA, choose the right form and dose.Look for PharmaGABA — naturally fermented GABA, derived from Lactobacillus hilgardii, which has the strongest clinical evidence base. A dose of 100–300 mg taken 30–60 minutes before bed is consistent with the positive studies. Avoid very high doses; the null result at 1,500 mg/day is important context.
Important drug interaction note: If you are taking benzodiazepines, anticonvulsants (gabapentin, pregabalin, valproate), or any other GABAergic medication, discuss GABA supplementation with your prescriber before adding it. The additive sedative effect is a real risk. The same applies if you drink alcohol regularly.
- Don’t skip the foundation.Sleep hygiene interventions, consistent sleep and wake times, a dark and cool room, and no screens in the 60 minutes before bed, are consistently among the highest-leverage sleep interventions in the literature. GABA may provide a genuine incremental benefit. But it cannot compensate for a fundamentally disrupted sleep environment.
The Bottom LineThe evidence for GABA and sleep is more substantive than I expected when I started researching it. The EEG data is real. The 90-day RCT showed meaningful clinical outcomes. The gut-brain axis mechanism is biologically plausible and now has direct RCT support. And the consequences of poor sleep in neurological recovery are not trivial – they are quantifiable, significant, and, to a degree, addressable.
GABA is not a guaranteed fix. Individual responses vary. The research is not yet definitive at the level of large multi-centre trials in neurological populations. But as one tool in a comprehensive approach to sleep quality alongside good sleep hygiene, appropriate medical support, and consistent rehabilitation, the case for cautious exploration is reasonable.
The next step is a conversation with your neurologist, GP, or rehab physician. Take the research with you if it’s useful.
Research ReferencesAll studies cited in this post are retrievable via PubMed:
- Yamatsu et al. — GABA sleep latency EEG clinical trial (2015) — PMID: 26052150
- Guimarães et al. — GABA 200mg RCT, sleep efficiency + mood (2024) — PMID: 38321713
- de Bie et al. — GABA high-dose RCT, null sleep result (2023) — PMID: 37495019
- Li et al. — Gut-brain GABA axis and sleep RCT (2024) — PMID: 39385735
- Muhtar et al. — Post-stroke insomnia and cognitive decline cohort (2026) — PMID: 41924789
- Smith et al. — Sleep, BDNF, and fatigue in stroke rehabilitation (2024) — PMID: 38802847
This post is for educational purposes only and does not constitute medical advice. Always consult a qualified healthcare professional before making changes to your supplementation or treatment plan.
If you or someone you care about is recovering from a stroke, brain injury, or any neurological condition, the Recovery After Stroke podcast and this blog exist for you. Subscribe on YouTube @BillGasiamis, or visit Recovery After Stroke to find episodes, resources, and community.
The post GABA, Sleep, and Brain Health – Neurological Recovery appeared first on Recovery After Stroke.
Photobiomodulation Stroke Recovery: How Laser Therapy Is Restarting Damaged Brains After StrokeFor seven years, a woman lived unable to remember faces. She had developed prosopagnosia, a condition that turned every person she met into a stranger, no matter how many times they had been introduced. She kept notes. She took photographs. She built systems to compensate for what her brain could no longer do on its own.
Then she sat down for a single laser therapy session with Dr. Robert Hedaya. One session later, the problem was gone.
“I can remember the face of the person I worked with this morning and his wife and the dimple on his face,” she told him, describing something she hadn’t been able to do in nearly a decade.
What Dr. Hedaya witnessed that day and what he now works to replicate for stroke survivors, people living with aphasia, early dementia, and Parkinson’s, is the result of a therapy called photobiomodulation. And the principle behind it may fundamentally change how you understand your own recovery ceiling.
Your Neurons May Not Be Dead. They May Just Be StuckWhen a stroke occurs, conventional medicine draws a clear line. Tissue that is destroyed is gone. Deficits that persist beyond the early recovery window are considered permanent. Survivors are told, sometimes gently, sometimes bluntly, that they have plateaued.
Dr. Hedaya challenges that directly.
In his clinical experience, there is often a population of neurons that survived the stroke intact but are no longer functioning. They are alive. Their cellular architecture is preserved. But they have lost their energy supply, specifically, the ability to produce ATP, the molecule that powers every cellular process in the body. Without energy, these neurons go quiet. They stop firing. From the outside, this looks like permanent damage. But it isn’t. It is dormancy.
This mirrors the concept of the chronic penumbra explored in hyperbaric oxygen therapy research, where viable tissue sits in a suspended state, waiting for conditions to change. Dr. Hedaya’s approach is different in method but identical in premise: the brain has not finished recovering. It is waiting for the right signal. Photobiomodulation provides that signal.
What Photobiomodulation Actually Does“After the first laser treatment, the problem was gone. Gone. She told me — I can remember the face of the person I worked with this morning.” — Dr. Robert Hedaya
Photobiomodulation, also called transcranial laser therapy, delivers precise wavelengths of near-infrared light to targeted areas of the scalp. The photons penetrate through the skull, meninges, and tissue to reach dormant neurons, where they act on the fourth complex of the mitochondrial electron transport chain, the site where nitric oxide accumulates and blocks ATP production.
The photons dislodge that nitric oxide. The mitochondria resume normal energy output. The neuron now has what it needs to resume its function.
The downstream effects are significant: new synapses form through a process called synaptogenesis, brain-derived neurotrophic factor (BDNF) is produced, inflammation decreases, and misfolded proteins associated with cognitive decline begin to clear. Given energy, the brain begins repairing itself, not because the laser forces it to, but because the cells already know what to do. They were just waiting for the fuel.
How QEEG Makes It PreciseNot every stroke survivor responds to the same laser parameters or needs treatment in the same regions. This is where Dr. Hedaya’s approach clearly separates from consumer LED helmets or generic light therapy devices.
Before any laser is applied, he conducts a quantitative EEG, a brain mapping process that measures electrical activity at 19 points across the scalp. Unlike a standard EEG, which relies on a clinician reading scrolling waveforms visually, QEEG uses AI to analyse thousands of data points and reverse-engineer the source. The result is a functional map: which networks are underperforming, which are overactive, and where pathways between regions have broken down.
This is paired with a neuroquant MRI that measures 30 to 40 distinct brain structures volumetrically. Together, they function as a GPS triangulating exactly where the laser should be directed, at what wavelength, power, pulse frequency, and joule delivery for each individual patient. These parameters are adjusted as the patient responds, session by session.
This level of precision is what distinguishes clinical photobiomodulation from anything available over the counter. A half-watt LED helmet delivering diffuse light through hair and scalp is not the same intervention.
Depression After Stroke – And the Whole-Body ConnectionRoughly 30% of stroke survivors experience depression in the aftermath. This is not simply an emotional response to a difficult event – it is a physiological outcome with identifiable drivers that conventional psychiatry often does not investigate.
Dr. Hedaya’s model, which he calls whole psychiatry, treats post-stroke depression as a downstream expression of broader disruption: hypothyroidism, hormonal imbalance, B12 deficiency, elevated mercury from dietary sources, gut dysbiosis, chronic inflammation, and unresolved neurological stress all play measurable roles. In one of his current stroke cases, treating low thyroid function triggered seizure sensitivity because post-stroke tissue is more vulnerable to excitatory input. That kind of complexity is precisely why a comprehensive functional evaluation must precede treatment.
For survivors too depleted to engage with lifestyle changes, Dr. Hedaya will now often begin with laser therapy directly. Once cellular energy is restored, the motivation and capacity to make further changes typically follow. The jump-start, he has found, enables everything else.
Is Recovery Still Possible After a Plateau?If you have been told you have reached your ceiling, the core message of this episode is worth sitting with: the plateau is often not a biological fact. It is frequently the consequence of underlying conditions that haven’t been identified, and dormant tissue that hasn’t been activated.
“The brain is incredibly plastic,” Dr. Hedaya says. “When you challenge it and give it everything it needs, nutrients, light, hormones, and remove the toxins, great things can happen. There is hope. There is so much hope.”
His practice, the Whole Psychiatry and Brain Recovery Center, offers initial consultations via Zoom for those who cannot travel to New Jersey. For survivors with a local physician willing to collaborate, educational consultation is also available. Reach Dr. Hedaya at wholepsychiatry.com.
If this episode opened something up for you, Bill’s book – The Unexpected Way That A Stroke Became The Best Thing That Happened follows the full arc of what recovery can become when you stop accepting the ceiling and start questioning it. Find it at recoveryafterstroke.com/book.
If the Recovery After Stroke podcast has supported your journey, you can support the show at patreon.com/recoveryafterstroke.
This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
The Laser That Restarts Brains – Dr. Robert Hedaya on Photobiomodulation, QEEG, and Whole Psychiatry After StrokeA laser pointed at the right spot in your brain can restart neurons that stopped working. Dr. Robert Hedaya explains how and who it can help.
Hyperbaric Oxygen Therapy – Dr. Amir Hadanny
Highlights:
00:00 Introduction – Photobiomodulation Stroke Recovery
01:09 Dr. Hedaya’s Medical Journey
07:55 Transition to Functional Medicine
10:31 Photobiomodulation Stroke Recovery Applications
19:21 Understanding Laser Mechanisms
24:36 Jumpstarting Healing with Laser Therapy
29:48 Understanding EEG vs. QEEG
34:10 Addressing Depression Post-Stroke
39:38 Holistic Approaches to Recovery
46:20 Patient-Centered Care and Follow-Up
51:38 The Role of Spirituality in Healing
Transcript:
Introduction – Photobiomodulation Stroke RecoveryDr Bob Hedaya (00:00)
After the first laser treatment, the problem was gone. Gone. She told me, she said, my God, I can remember the face of the person I worked with this morning and his wife and the dimple on the face. And I said, what are you talking about? She says, have prosopagnosia. I said,
says, can’t remember faces. I have to write down everything that I do and take pictures of everything and every person. I said, my God, it’s gone, gone. that’s when I went home that night and I was like, this doesn’t make any sense. How could this be? There’s nothing about a neurological condition being turned around in one minute. It makes no sense.
Dr. Hedaya’s Medical JourneyBill Gasiamis (00:41)
Welcome everyone to the Recovery After Stroke podcast. I’m Bill Gasiamis and my guest today is Dr. Robert Hedaya, a board-certified psychiatrist, functional medicine practitioner, and the founder of the Hull Psychiatry and Brain Recovery Center in New Jersey. Dr. Hedaya trained at Georgetown and the National Institute of Mental Health. And over the course of his career, he moved from conventional psychopharmacology into functional medicine after discovering
of what was driving his patient’s symptoms had nothing to do with their medications and everything to do with their biology. In more recent years, Dr. Hedaya has added a tool that very few practitioners anywhere in the world are using, QEEG, guided transcranial photobiomodulation. That’s laser therapy, precisely
using a functional brain map to reactivate neurons that survived the stroke but stopped working. In this conversation, we get into the science behind photobiomodulation and what it actually does inside the cell. How QEEG brain mapping removes the guesswork from treatment, why post-stroke depression is so often mismanaged, the role of nutrition, hormones, and toxin load in recovery.
and why Dr. Hedaya believes the plateau most survivors are told about is not the biological sealing they’ve been led to believe it is.
Now, before we get into this episode, if you found this podcast helpful in your recovery, my book, The Unexpected Way That a Stroke Became the Best Thing That Happened goes deeper into the tools and mindset shifts that support long-term recovery and personal transformation. You can find it at recoveryafterstroke.com/book. And if this show has supported you, you can support it at patreon.com/recoveryafterstroke. Now let’s get into it.
Bill Gasiamis (02:38)
Dr. Hedaya.
Welcome to the podcast.
Dr Bob Hedaya (02:41)
Thank you. Pleasure to be here.
Bill Gasiamis (02:43)
It is a very good pleasure to have you here as well. The reason being is because I, what we’re going to discuss, but B the way that you came to be on my podcast was through somebody who listens to my podcast, reaching out and saying, need to have this gentleman on your podcast. And I get that a lot. And sometimes it’s like, thank you for the referral, but maybe that’s not for me, but this is definitely for me. Can you give me a little bit of.
Dr Bob Hedaya (03:01)
Mm-hmm. Mm-hmm.
Bill Gasiamis (03:13)
background for people who are listening to understand how it is that you and I came to be on the podcast today, but more importantly, like your medical journey to today.
Dr Bob Hedaya (03:26)
Well, so first of all, I ⁓ was treating a woman who was, let’s say, about 50 years old. She had several strokes. And her husband looked me up, and they came here for treatment. in New Jersey. And ⁓ she had significant improvement in her ability to speak over a short period of time. That’s a little.
kind of summary of the situation, but it was ⁓ profound. She still has work to do, a lot of work to do, but she’s doing it and she’s progressing nicely. So that’s, he basically, I guess, decided this needs to get out. And so he contacted you, et cetera, et cetera. In terms of my journey, ⁓ that could take a few hours. So let me try and summarize it.
I will say I basically went to medical school, took off six months to study medicine on my own after two years because I really, lot of reasons, but one of them was I just was memorizing things and I didn’t really understand what I was doing. And so I took off six months and I really learned about the human body. I studied, I had a schedule, a very fixed schedule, about 10 hours a day of studying and exercise and eat. was very, you know, I was young and regimented.
And I had six books, six subjects that I wanted to get through and I did. And I learned all about the body and different parts of the body, how they interact with each other. And also I was able to understand and predict even certain kinds of processes and problems in the body. So that was an integrative experience, which ⁓ later really served as the foundation for what I do. Fast forward, I was going to be a surgeon, decided to be a psychiatrist instead, because I was fascinated by
by the human mind. And what happened was I was trained at Georgetown National Institute of Mental Health in Washington, DC. And then I was in practice for about a year. And I was treating a woman who had panic attacks. And they weren’t getting better after a year. And panic attacks are pretty easy to treat. And so I was like, what’s going on here? She paged me one night after a year, Saturday night.
And I remember I had a little beeper, you know, and I went to find a phone booth and, hey, Joanne, what’s going on? It’s midnight, right? She’s talking to me, I’m having a panic attack. And I mean, I still remember the anguish in her voice. You know, it was really, really, really rough to listen to. So Monday morning, I went into the office very early and I’m like, I’m missing something. What am I missing? So I found I had one piece of blood work. had a blood count and the size of her red blood cells was large.
and I had seen that and didn’t know what it meant and ignored it. Very little. It wasn’t very large. It was just a little bit out of the norm. And I was trained in hospitals. know, in hospitals, you don’t worry about the little things. You worry about the train wrecks, right? So you never really learn what the little things mean. So here was a so-called little thing and it was ruining her life. Meanwhile, I did some research. It was a B12 deficiency. I gave her B12 injection. And with the first injection, her panic was gone.
Transition to Functional MedicineI mean, gone, gone, gone. And I was like, whoa, what else am I missing? Because psychiatry, neuropsychiatry, it’s a revolving door. You go to this doctor, you take these meds, you do this therapy. That works for a while, then you go somewhere else. I figured I’m missing a lot of stuff. And basically, ended up learning. I didn’t know it was called functional medicine, but I ended up learning functional medicine on my own. Wrote a book, got introduced.
to Jeff Bland at IFM. contacted me and took formal training and then, you know, that was what I was doing. And I did that, ⁓ put out a second book ⁓ and that was a best seller. And ⁓ the book was called the Anti-Depressant Survival Program. But really it was functional medicine psychiatry or whole psychiatry, which I like to call it. But it’s functional medicine psychiatry, but the publisher wanted…
you know, a nice fancy title that would, know, so they decided to call it the Anti-Depressant Program, you know, survival program. Anyway, the best seller and we had thousands of phone calls, we had a lot of publicity and I couldn’t obviously see everybody. So I picked people who had treatment resistant depression and people who had the resources and the motivation or the support to be able to do what they needed to do.
And I just treated them with functional medicine. And at this time, you’ve got to realize I was a psychopharmacologist. I was also trained as a psychopharmacologist. So I was doing a lot of psychopharmacology. I mean, a lot. And now I’m doing functional medicine on everybody. And after about three years, I’m noticing that I’m not actually doing that much psychopharmacology anymore. And everybody’s getting better. And the diabetes is going away.
and osteoporosis is going away and one woman’s MS lesion in her brain went away and I’m like, what’s going on here? You know what? I might be lying to myself. So maybe I’m paying attention to the positive cases and I’m ignoring the negative. So I hired a statistician to go over all my cases over the course of this period of time, it two or three years. Ended up in 23 cases of treatment resistant depression. ⁓
I wasn’t lying to myself. Every single person went into recovery, not partial remission, not 50 % better, fully recovered by 10 months, every single one. And I was just blown away that, you know, I mean, I was blown away before, but then it was like, well, you’re not really lying to yourself. So that’s what I was doing until 2014 when I retired. I had actually an inaccurate diagnosis. I retired and…
turned out it was incorrect. So it was actually really good to be retired, although I missed it terribly, really missed medicine terribly. But it gave me some time. And this is where this kind of starts to relate more to your audience. ⁓ I’m sitting on a hammock for six hours reading a book. Well, you can’t do that when you’re in practice.
Bill Gasiamis (10:07)
Good thing to do.
Yeah.
Photobiomodulation Stroke Recovery Applications
Dr Bob Hedaya (10:13)
That doesn’t happen. So but I was you know in retirement, so I’m reading this book and put two and two together over the course of time and I learned about laser which which they were using in Russia in 1980s and learned how the laser worked and And I was like whoa this could really help the brain and Then I was thinking now. I’m not in practice right, but I’m then I’m thinking but how would I know where to?
point the laser in the brain for a patient. And then I keep reading in the book, and then they start talking about in the next chapter about quantitative EEG. And I’m like, oh, that’s how I would know. So I spent the next three years or so actually studying these methodologies. And then in 2017, I want to say, or 2018, I treated my first patient who had early dementia.
published this case actually. I was treating her for early dementia. And I had treated her for six months with functional medicine, know, hormones and treating infections, et cetera, et cetera. And she really was much better. And then I was ready to do my first quantitative EEG. And she’s doing much better. She still has some symptoms. And I do the QEG. And actually, if I could share my I don’t know if I can,
Okay, so basically what I just sent you is ⁓ how her brain looked after six months of functional medicine, right? So I was shocked because I thought her brain would look much better. And then I said, okay, let’s do the laser. So I knew where to point it because the QEG and this was the shocker. With the first laser, she had a problem.
before the laser treatment of facial blindness. I don’t know if you know what that is. It’s people who can’t remember faces. They just met someone, they can’t remember the face. It’s called prosopagnosia. She had acquired it seven years earlier.
Bill Gasiamis (12:11)
I do.
Yeah.
Dr Bob Hedaya (12:21)
After the first laser treatment, the problem was gone. Gone. She told me, she said, my God, I can remember the face of the person I worked with this morning and his wife and the dimple on the face. And I said, what are you talking about? She says, have prosopagnosia. I said, what?
What is proto-diagnosia? I don’t know what that is. She says, can’t remember faces. I have to write down everything that I do and take pictures of everything and every person. I said, my God, it’s gone, gone. that’s when I went home that night and I was like, this doesn’t make any sense. How could this be? There’s nothing about a neurological condition being turned around in one minute. It makes no sense.
But then I realized, I reasoned it out, realized, well, she had a population of neurons that were kind of alive, but they were not really functioning. And then I kind of jump started them with the laser and they went about their business and did their job.
Bill Gasiamis (13:19)
I love it. So, that’s a contrast on what you’re doing as in psychiatry, because psychiatry from, you know, my understanding is, you know, if you, if you speak to somebody who’s been through psychiatry and you ask them, how’s your condition or how is your situation or what has improved, very few people can say, ⁓ well, I’m, I’m better. I’ve overcome it. We’ve moved beyond the resolve that
Dr Bob Hedaya (13:27)
Yeah.
Bill Gasiamis (13:47)
Nobody really does that. They kind of just continue to go through the motions of another appointment, another medication, another adjustment in the amount of medication, et cetera. And what you said also seems a little bit ridiculous and kind of too quick. How do you get that kind of a solution that’s meant to take ages? You’re supposed to go through the typical times and it’s supposed to be costly and
Dr Bob Hedaya (14:06)
Too quick.
Bill Gasiamis (14:16)
unattainable and all these things. And it makes people feel sometimes I know stroke survivors who come across promises like that from other ⁓ people who talk about ⁓ perhaps ⁓ non-studied, ⁓ no scientific background kind of solutions to stroke and then kind of give everyone a blanket. If we do this, we’ll fix your stroke deficits, which is not true. ⁓ And then
And then it leaves people feeling like they got ripped off. If they paid money, it leaves people lost for hope that there is no hope, cetera. And we kind of find ourselves in a, okay, desperate, what do we do now situation, right? And that’s kind of why I got excited when your patient’s husband reached out and said that we should chat. And I had a bit of a look into the kind of work that you do. ⁓ Functional medicine, I’ve heard about heaps.
Dr Bob Hedaya (15:00)
Hmm.
Bill Gasiamis (15:14)
And I love that it’s merged with psychiatry because when I started my journey in 2012, overcoming the first brain bladed and the second brain blade six weeks later, I went into functional medicine study to find out not formally, but I started doing what I didn’t know at the time was studying functional medicine and understanding like how I can decrease the inflammation in my brain.
and provide the right environment for healing. And the first thing I came across was a book by somebody that you’re gonna know, Mark Hyman. And the book was, ⁓ the book was, ⁓ Eight Fat Get Thin. I read it, not wanting to get thin, I read it ⁓ because it ticked the boxes for the diet that I was gonna use to reduce inflammation in my brain.
Dr Bob Hedaya (15:54)
Okay.
Bill Gasiamis (16:12)
And the side effect was I thin. I wasn’t going for that because I was taking medication. was taking ⁓ dexamethasone, which made me put on weight and made these like all these types of ⁓ terrible side effects, but it was helping reduce the inflammation in my brain. So I, I was happy to have it, but I needed to achieve the same outcome as dexamethasone.
Dr Bob Hedaya (16:13)
I’m kidding.
Bill Gasiamis (16:41)
or a similar outcome as dexamethasone on a permanent basis without taking dexamethasone to improve the situation in my brain. And then I started to realize that I had a lot of power and I was ⁓ only not guided properly because my physicians, my doctors weren’t able to offer advice in that space. And had I not been the curious kind of guy that I was, I never would have come across Dr. Hyman and some
other amazing guys who wrote books at around about that time that were similar in nature. so you’re, and then, and then a little while later, I found there was a Tasmanian, ⁓ psychiatrist, forget her name, but I have her book on my shelf upstairs who wrote a book about, ⁓ psychiatry and food and, the link between food and a good psychiatric outcome.
Dr Bob Hedaya (17:15)
huh.
Bill Gasiamis (17:39)
in the brain. And I just thought, okay, there’s much, much more that needs to happen here. Now, this the connections, there’s a lot of connections here. So recently on my YouTube channel, somebody left a comment I wanted to know about red light therapy, and will it help their brain? And I’m like, I have no idea. But let me do some research. I went on to PubMed, I found some articles and wouldn’t you believe it, there is a whole bunch of ⁓ proper data that
Dr Bob Hedaya (17:40)
You know what? Come on.
Bill Gasiamis (18:08)
suggests that there is a benefit. The only challenge that I always have with all of these potentially beneficial interventions is there’s no diagnosis done in the first place to determine whether somebody actually is eligible for a particular intervention. And what it sounds like you’re able to do is the diagnostics part and determine their eligibility. Tell me a little bit about why that is important.
Dr Bob Hedaya (18:35)
Right.
Okay, so let me back, I wanna back up, because you said something very important, then I wanna reiterate it. I just gave you before a case of a woman who in five minutes, her problem was gone, right? Not, people should not think that’s the norm, okay? Not the norm. Occasionally it happens, I have a guy who had a head injury and had light sensitivity and confusion in certain situations with light, and one treatment, boom, gone.
Understanding Laser MechanismsPeople, you know, I have cases like that, but most of the time this is a gradual process. So people should not think it’s a cure-all for everybody. We do have to know who it’s good for. So what we do diagnostically before we do this is I will look at their brain, you know, obviously take some history and all of that business, but we do a quantitative neuroquant MRI. So we look at the different structures inside the brain. You know, we look at…
Bill Gasiamis (19:32)
Lovely.
Dr Bob Hedaya (19:32)
30, 40 different structures. And then we also do a quantitative EEG, which is an electroencephalogram. We measure the electricity in the brain in 19 different places. And then there’s this really AI that takes all this data and it reverse engineers it. It’s called the inverse solution. And you can actually see the pathways, all of the pathways in the brain and the surface areas of the brain. And you can look at that, correlate that with the person’s symptoms.
with the neuroquant MRI, it’s like a GPS, right? A triangulation of information and then assuming there’s not a mass or an aneurysm or some reason not to do the laser like an overactive brain or something like that, then we could consider using the laser. And then we also know where we want to do it based on the symptoms, based on the QEG, based on the neuroquant. We will decide what we’re going to target. And then we combine that, sometimes, not always.
Bill Gasiamis (20:05)
Hmm.
Dr Bob Hedaya (20:31)
with neurofeedback so we can exercise the areas that we want to exercise or calm down the areas that we want to calm down. And sometimes with hyperbaric oxygen, things like that. And hormones, using hormones or things like that.
Bill Gasiamis (20:42)
Yep.
Hyperbaric oxygen has been a topic that I’ve discussed as well on the podcast and the people that I spoke to about hyperbaric oxygen and guys, I can’t remember right now, but I’ll put a link in the show notes for anyone listening so that you can go and find that episode and have a listen to it. Basically, what I loved about their approach was that they did a massive amount of diagnosis beforehand to determine where the penumbras were and then target those penumbras while the person was in the chamber.
by getting them to do certain exercises that would activate those areas and therefore be targeted. So it sounds like the laser therapy is similar. Tell me about the laser. What kind of a laser is it? How does it get targeted to a specific spot? And what does it do when it goes there? I mean, I imagine it just doesn’t point there and go, I’ll illuminate that and it’ll be better. How does it actually work?
Dr Bob Hedaya (21:18)
Mm-hmm. Mm-hmm.
Okay, so the laser, there are a bunch of different parameters that we have to adjust for each person. So it’s the frequency, how fast is the wavelength? What’s the wavelength? How many times per second is it pulsed? 10 times per second, 40 times per second, 50 times per second. Is it a 8, 10 nanometer wavelength or is it a 1064 wavelength? How many joules are we delivering?
you know, where are we delivering it? So there are lots and lots of parameters to adjust, right? ⁓ What does it do? So simple, the first thing that it does, it does many, many things, right? But the very, very first thing it does is it actually releases ATP, the energy molecule, from your mitochondria. So it basically, the photon goes to the fourth channel, the fourth complex in the mitochondria, bumps off
the nitric oxide, and that opens the flow of ATP. Well, if your brain, if your neurons have energy, they say, ⁓ energy, ⁓ well, we know what to do with energy. Let’s fix the puddles. Let’s build the roads. Let’s make the connections. Let’s do whatever we got to do. So now you’re getting energy flow. You also get synaptogenesis. You build new synapses. You get production of brain-derived neurotrophic factor.
Bill Gasiamis (23:01)
Wow.
Dr Bob Hedaya (23:05)
You get reduction of inflammation, get reduction of tau proteins and misfolded proteins. ⁓ You get, subjectively, get cognitive enhancement. aphasia, you know, people can start to speak. I mean, I can tell you one story. We used to shave people before doing the laser because I wanted to… Remember, you got a skull, you got the skin, you got all this stuff, right? How are you going to get the light into the brain, right? So we know that only about
Bill Gasiamis (23:31)
Mmm.
Dr Bob Hedaya (23:35)
2.6 % of the light goes through the skull and the meninges and all the layers, right? So we used to shave people because I want to get the hair out of the way, right? At least get rid of some of it. So I had this woman who came to me, this is probably seven years ago, I guess. And at that time, I would not use the laser until I had done functional medicine on the patient. Because I figured, you know, let’s get the terrain straight.
the nutrients, the hormones, get rid of the infections, get rid of the toxins, then we’ll apply the sunlight to the brain, to the plant, right? That was my logic. I thought that made perfect sense. So this woman came to me. She was 70 years old, obese. The husband wanted me to give her the laser. She wouldn’t change her diet, not an iota. High blood pressure, obesity. She could not speak. She would not take a medicine. She would not…
Bill Gasiamis (24:04)
Mm-hmm.
Mm.
Jumpstarting Healing with Laser TherapyDr Bob Hedaya (24:33)
Like, you name it, non-compliant all the way. Maybe you could say a word or two, that was it. Her husband begged me. I said, listen, it’s a waste, okay? It’s just a waste. I can’t ask her to shave her head. It’s not gonna work. I’m not doing it. He did not stop. So finally, I said, okay, fine, I’ll do it. So I was in my office and I’m making the laser plan.
And I’m just writing, and something pops out of my mouth, God, I need a miracle. So I go into the laser room, and I start doing the laser. She starts talking. I have tears. He has tears. She starts talking. So by the end of like 20 sessions, I’m sitting with her having a 45-minute therapy session, because it turns out she was really severely abused when she was young. ⁓ She’s having a whole conversation with me.
Turns out she’s psychotic also now. She’s also a psychotic and we didn’t know. So she needs to take some medicine for the psychosis because in the middle of the night, she’s going around with a baseball bat and she wants to like do, and she wouldn’t take medicines, I had to stop the laser. But that was an amazing thing because that was one, but with aphasia, typically it’s more gradual, much more gradual. But I have had a couple of patients where,
and a woman came from Chicago and she just started talking also. So everyone’s different. You can’t necessarily come into this expecting that kind of thing is wonderful when it happens, but you
Bill Gasiamis (26:14)
Yeah.
I love the fact that you can intervene with a laser, but also people can intervene with all the things that you said that that patient wasn’t doing beforehand. And that you that’s the top of the hierarchy of how you approach healing the brain is you do all those things. And then you supplement with ⁓ with a therapy like laser or whatever. And you kind of combine that and you make
Dr Bob Hedaya (26:25)
Yeah, yeah, you got it.
Bill Gasiamis (26:42)
like the, you make a soup of amazing things that all come together at the same time to support you together. And laser is just one of those things, but all the hierarchy like is so important because
Dr Bob Hedaya (26:48)
Yeah.
It’s all important,
all important. But I will tell you this. I have come to the point now where I believe that like people come to me and they don’t want to do anything and I’m like, okay, because I can jumpstart you, assuming you’re a good candidate. I can jumpstart you with the laser. I could just jumpstart you and then once I’ve jumpstarted you, say, ⁓ yeah, okay, I’ll do this. ⁓ okay, I’ll do a little of this. I’ll do a little. Because I’m bypassing everything and I’m giving you energy.
Right? And so if you have energy, then, you know, there’s a lot that you can do that you couldn’t do before. So I kind of switched my model, really, only because of the accident of this guy who insisted I give his wife the laser, you know.
Bill Gasiamis (27:30)
Yeah.
That’s not a way to go. mean, ⁓ there isn’t one way to solve a problem. there’s probably many iterations of, know, like how you can put that particular, like intervention together for a person that could specify for that individual, we’re going to go down this approach for you. You were going to go down this approach to get you going. Since you have all these, ⁓ challenges and energy is difficult. Maybe we’ll go directly with the laser and then
Dr Bob Hedaya (27:46)
Bye.
Mm-hmm.
Bill Gasiamis (28:09)
We give you the skills, the energy,
Dr Bob Hedaya (28:09)
That’s right. That’s right.
Bill Gasiamis (28:12)
the training, the coaching, the support to implement the rest of the stuff that you need to implement to continue providing the right ⁓ space for your brain to heal in ongoing so you’re not just relying on laser.
Dr Bob Hedaya (28:14)
Yeah. ⁓
Yeah, yeah
Yeah, if someone comes to me post stroke for example and the laser is appropriate I’m not gonna say well, we’ll get around to laser in six months. I’m not gonna do that They need relief they need help if it can help them Let’s do that. Let’s jump on that and you know, and then is the other stuff we need to do will do it And there’s usually stuff to do ⁓ But I want to get the healing remember the laser is healing
It’s clearing out proteins, reducing inflammation, increasing blood flow, synaptogenesis, doing all these good things over the course of time. So you really want to get that process going, I feel, as soon as you can. then, okay, now you can work on the diet that’s going to take some time, check the hormones, make sure there’s no infections, toxic element, you know, all that functional medicine stuff. Maybe you need some medication for depression, you know, it’s having a…
a phaser or a stroke or a head injury or some of things like this, they turn your life upside down better than I know. It’s ⁓ incomprehensible, really.
Bill Gasiamis (29:26)
Yeah, really. Yeah, really challenging.
With a laser, how much laser for how long, how often?
Understanding EEG vs. QEEGDr Bob Hedaya (29:37)
Great question. So let me say a couple of things. First of all, we have laser and then we have the LED helmets, right? You’ve read about and read the helmets, right? So there are a lot of studies on the helmets. There’s a question of whether they’re really having a direct effect because for a few reasons. Number one, it’s LED, it’s not a laser.
Number two, the voltage is so low, if you’re only getting 2.6 % through and it’s so low to begin with, what do you think you’re actually delivering into the tissue? know, it’s hard to imagine that you’re delivering much. there, know, Henderson, I think, wrote an article where he showed there’s no penetration into the brain. But the studies do show cognitive benefit. So it could be an indirect effect or, you know, all the studies are done by the companies that make the…
the helmet, there could be some bias. I don’t know the answer there. The laser ⁓ itself is more potent, so we’re doing, say, 30 watts. So the equivalent of a 30-watt light bulb, right? They might be doing half a watt, a very, very, very dim light bulb. We’re doing 30 watts. Now, we’re targeting the area or areas that we want to hit. Now, it goes through 2.6.
Bill Gasiamis (30:34)
devices.
Dr Bob Hedaya (31:03)
5 % of it goes through. And then of course it’s going to be diffused, right? And it’s going to hit the surface tissues more. 1064 will penetrate deeper into the brain, but you don’t really have to go that deep because there’s downstream effects that happen, right? So we really, and then we adjust the parameters depending on how someone does. for example, you know, I had a woman who I was treating
And actually it was the patient who her husband contacted you. I was treating her with a certain amount of energy and then after about five sessions I went up, I doubled the energy and boom, she had a response. But we have no way of knowing that’s what she needed. It’s all a calculation. But she, you know…
Bill Gasiamis (31:39)
Yes.
Dr Bob Hedaya (32:00)
Whatever it is, the thickness of the skull or the membranes or whatever it is, that’s what you needed and that’s what worked.
Bill Gasiamis (32:06)
Yeah. Tell me about ⁓ QEEG. So let’s dive deeper into it a little bit because we kind of glossed over it. I think it’s important to discuss how it’s different from EEG, ⁓ what EEG is and then what the Q adds to EEG.
Dr Bob Hedaya (32:24)
OK, so the EEG, imagine somebody, you put a cap on, and it has all these electrical wires that are measuring the electricity that comes, that’s on your scalp. It’s coming from your brain, but it’s measured at the scalp. And each one is measuring the energy from that spot, comparing it to other spots. And then you might, your viewers might remember.
all those squiggly lines, you’ll see like 19 or 20 squiggly lines and you’re like, what is this spaghetti? I don’t know what this is. And I mean, even in medical school, we looked at it and our eyes would glaze over because who knows what it is. So the neurologists look at it and they’ll scroll through it and look for certain patterns to see is there a seizure or is there area of damage where there’s a lot of slowing like the frequency of the electricity slows down if there’s tissue damage, right? And they look
visually to see what they can find. But we know with AI, you can get the patterns that you can determine. There’s no way the human mind, the human eye, a trained eye, I don’t care how long you’ve been looking at EEGs, there’s no way you can extract this data that we now extract. So the quantitative is actually looking at the quantity of this, what’s going on here versus the quantity of electricity that’s here versus what’s here versus what’s here.
And then all of that is calculated and they say, ⁓ well, if this is high and this is here and this is low here and this is this, well, that means they’re coming from this deeper place here and that’s under functioning. And, you know, that’s done over thousands, thousands of points in a very short order, very short order. It’s amazing. I can’t imagine practicing without this. So now I can look at the thalamus. I can look at the putamen.
Addressing Depression Post-StrokeBill Gasiamis (34:07)
Mm-hmm.
Dr Bob Hedaya (34:17)
In my office, I can do these tests in my office. If a patient is my patient, I can send the QEG to their home and do it in their home. And I get this imagery that’s immensely better than a spec scan. It’s not an MRI, an MRI structure. This is function. Okay, this is function. It tells us how different parts are functioning.
Bill Gasiamis (34:40)
What’s lighting up? What’s not lighting up? What could be lighting up better? What’s not going to light up anymore?
Dr Bob Hedaya (34:45)
What’s the information flow? How is the flow going from here to here? How about this network? Is this network working? Is this network overworking? Is it underworking? How about the neuron populations that are firing when I’m relaxed? How are they doing? How about the ones when I’m thinking? How about the ones when I’m thinking fast? How about the populations when I’m emotional? We can look at all those populations and see what’s going on with those populations. And then we can actually target them.
train them, et cetera. And then we have that data that we treat, and then we measure and see is it getting better? Do we need to change the protocol? It’s not helping, it is helping, et cetera.
Bill Gasiamis (35:29)
Yeah.
with stroke, so many things come from stroke that people are not equipped to handle. You know, firstly, all of the, ⁓ the parts relating to, ⁓ simply the person discovering them, they’re, they’re immortal after all, you know, you become a mere mortal immediately and you kind of work out the most terrible thing that could have happened to me happened. My brain is injured and all these things go away. Right. And then.
Unfortunately, like I think it’s 30 % the studies of people who experienced stroke will then also experience depression. Like as if recovering from stroke isn’t enough and all the deficits that you also have to recover from depression. What’s it like? How can that be supported with this particular method, this approach that we’re discussing here today?
Dr Bob Hedaya (36:28)
So ⁓ kind of separate from stroke, ⁓ treat treatment resistant depression with laser all the time. With stroke, we use the laser, but you have to watch the QEG to make sure you’re not getting overstimulation, number one. Number two, I learned this with the patient that referred me to you, ⁓ that after, put us in touch, there was actually a central
Bill Gasiamis (36:44)
huh.
for us in touch.
Dr Bob Hedaya (36:58)
hypothyroidism, meaning the low thyroid function, right? And we had to treat that, but the problem was as we treated that, there was a supersensitivity and because the tissues after stroke are more vulnerable to seizures, the patient actually had a seizure. She was actually having seizures we didn’t know, mild seizures. And then when we treated the thyroid, then we actually ended up having seizures. now we have to support, you need thyroid function to be
good in order to not be depressed, right? If you have low thyroid, you’re much more likely to be depressed in the face of a stroke or other stresses. So we were kind of a little bit of a bind there because we went and treated, but it’s too sensitive. So anyway, we’re actually threading that needle nicely and we’re moving slowly and carefully and keeping, there’s no seizure activity now. But you have to treat the depression because of the depression itself.
Bill Gasiamis (37:29)
Yep.
Dr Bob Hedaya (37:55)
is a big problem because you know to recover from stroke, man, you gotta work hard. You gotta keep a good attitude. gotta have your eye on the ball. There’s no room for like…
I’m going to give up. There’s no room for that. I mean, of course you feel it and I mean, it’s all natural feelings, but you have to really be determined and that’s essential. so with depression that is ⁓ really can get in the way. So we treat it. The laser can treat it. Sometimes pharmacology, sometimes therapy, sometimes yoga, know, hyperbaric, all these things that we do with the nutrition, making sure the hormones are right. All these things work together, you know.
Bill Gasiamis (38:14)
Yeah.
I love all of those things that you mentioned. And then all of a sudden you just throw in yoga. mean, it just, it’s so counterintuitive, isn’t it? When you have a conversation about all these acronyms and all these tests and lasers and all that kind of stuff, and then you just throw in yoga casually like that. It’s, and we underplay it, but it’s such a massive thing in the picture of what creates the environment for a good recovery, but also
I love that you mentioned the thyroid in that conversation as well about depression and what can also be a trigger to depression and people may have depression, never check their thyroid and not know that it’s a thing. Now I’ve had thyroid surgery, have ⁓ half of my thyroid removed because I had a massive ⁓ goiter on one side and that was such a difficult thing to discover and have to go through 16 months after brain surgery.
but they only discovered it after my brain surgery when they did a chest x-ray, because I wasn’t recovering properly and they found that I had this goitre which would have been there for a long, long time impacting my health and all sorts of things. And I make that point because often people who have had a stroke and can’t speak, for example, have aphasia, ⁓ or their arm doesn’t work or the leg doesn’t work properly, will say, I just wanna fix this thing. If I could speak,
Dr Bob Hedaya (39:40)
No.
Holistic Approaches to RecoveryBill Gasiamis (40:09)
everything’s better, but they’ve never looked at the other things that may be contributing to keeping the speech at a level which is not good enough for them, for example, to be comfortable with. And it’s like this one track mind, I’ll just get my speech back, I’ll get my speech back, you what do I need to do? Or make it go, get back for me. There’s often no looking into the other things that might be causing depression, for example.
Dr Bob Hedaya (40:31)
Thank you.
Bill Gasiamis (40:38)
After stroke, know for a fact that the gut gets impacted ⁓ very dramatically from a stroke and the gut is highly linked to ⁓ mood and how you feel. And nutrition is what supports the gut to feel better and taking out things from the diet that are ⁓ making the gut sluggish and not work appropriately will ⁓ improve your mood and how you feel. It’ll make a difference and
Dr Bob Hedaya (40:59)
Okay.
Yeah.
Bill Gasiamis (41:08)
and it’ll add to one of those little tools that supports depression and makes depression less impactful and you have less swings, et cetera. And that’s kind of the point that you’re making is that you don’t just turn up and do psychiatry. We’re gonna do psychiatry, treat you pharmacologically and then send you on your way and then see you in six, 12, eight months again or whatever and then just repeat the process again.
It’s a whole, know, holistic is the word that you hear, but it is a broader conversation that people need to be having. And that sounds like what you guys do. It sounds like the conversation doesn’t encompass, it encompasses everything. It doesn’t just focus on one intervention.
Dr Bob Hedaya (41:56)
That’s why I call it whole psychiatry. But it really should be whole neuropsychiatry or whole brain or, you know, but it’s whole body, whatever you want to call it. It’s really more than the body because obviously the social connections play a big role as well, you know. So yeah, everything you’re saying is 100 % true and it’s all real. Everything you’re saying is real. Everything you do. mean, simple things going back to the B12. You you need B12 to…
Bill Gasiamis (41:58)
Yeah.
Dr Bob Hedaya (42:26)
remyelinate your neurons. need to keep the mercury, by the way, got to keep the mercury levels low. know, the mercury, if you’re eating tuna fish or swordfish and you have high mercury levels, know, the mercury will actually prevent you from making new branches. The mercury actually will bind on tubulin, which is like a brick that you need to build new roads. And it will prevent the tubulin from building new roads in your brain. So here you are working hard trying to…
Bill Gasiamis (42:28)
Mmm.
Dr Bob Hedaya (42:54)
do things and you’re a can of ⁓ whatever tuna fish with loads of mercury two, three, four times a week. Well, that’s not working, you know. So that’s why you really want to look at the whole thing. It’s a lot. It’s really a lot. You know, it’s a big program, but you you take, take steps. Everybody has different needs or not everybody has to do everything.
Bill Gasiamis (43:04)
Yeah.
Yeah. Not everybody needs to do everything to achieve significant results, but it’d be amazing to be able to find the things and target those, the ones that you’re to get the most bang for buck on. So you’re to putting time and effort into things that are not getting results. For example, an led hat from, uh, Amazon for $9 that you put on your head. And it’s basically just a red light hat. It’s not really doing the thing, right?
Dr Bob Hedaya (43:32)
Hmm.
Ha ha ha.
Bill Gasiamis (43:49)
And that’s kind of why I started to have that conversation and do a little bit of research in what they, know, what’s medically known as or scientifically known as photo bio modulation, you know, the idea is great, but then it came to me from somebody who I imagine was looking at a seven or eight or $9, $10 cap with red lights that put on the head and they
Dr Bob Hedaya (44:00)
Right.
Bill Gasiamis (44:15)
paid money for a cap and hoping for an outcome and they didn’t get an outcome and then they’re wondering why. I suggest when people are looking into those topics, is gonna go and have a look at the science, what it says about the nanometers of the type of light that you need to be experiencing, how, where, who, and always do these things with medical supervision. It really challenges me when I find out people do things like, know, methylene blue was a thing.
Dr Bob Hedaya (44:44)
Right.
Bill Gasiamis (44:45)
uh, very recently and people will just
go get a bottle of Methylene blue from somewhere and just start taking it and have no idea what they’re doing and, and, and, know, what they could hope for. They could be making things worse than for themselves and actually making themselves, um, like make things a lot harder for themselves. So, uh, my point is this all needs to be done under medical supervision. Typically when you, somebody reaches out to you,
how do you begin the conversation and then how does that person engage with you? And then what happens after they’re treated? Because often I know from my experience with all my neurologists, et cetera, very rarely do I see anybody a second time, six months, 12 months, 18 months, five years down the track. You usually go in, they patch you up, they send you home, you get back to your life and then maybe you do one MRI.
Dr Bob Hedaya (45:36)
Really?
Bill Gasiamis (45:44)
⁓ for a few years after brain surgery just to make sure that everything’s stable. But that’s about it. Nobody follows up with you.
Dr Bob Hedaya (45:52)
No, it’s a whole different ball game with us. No. So what we do first is ⁓ if someone will contact us through the website, which is wholepsychiatry.com, they will actually fill out a form. And if we feel that it looks like we might be able to be helpful to them, then we will send them a welcome letter. And then they will have the opportunity to meet with our new patient coordinator at no charge.
Patient-Centered Care and Follow-Upand she’ll talk with them for 15 to 30 minutes and kind of tell them what’s going on and see if they, you know, the fit is good, et cetera. And then they have an opportunity if they want to meet with me on Zoom for 15 to 30 minutes and ⁓ I’ll figure out, can I help them? Can I not help them? Is it a good fit, et cetera? And then if it looks like, you know, green light and they decide they want to move forward and it makes sense, then we’ll schedule an evaluation.
The time duration of the evaluation depends on what kind of patient. It could be a couple of hours, could be four and a half hours. But usually for neurological patients, straightforward, it’s a shorter evaluation. And before the evaluation, we’ll collect the neuro-quant and the QEG and the old records, et cetera. And then I will go through all of that data plus lab data that we collect. And I will then have an idea.
Okay, what’s going on here? Now there’s all these things. There’s digestion, there’s nutrition, there’s immune function, inflammation, toxins, hormones, all the hormones, structural issues, chiropractic issues, traumatic brain injury, cardiovascular issues, et cetera. We look at all of that and then to see what are the players here and spiritual, social resources, connectivity. We look at all of this.
And then we have a whole picture of what’s going on. And then we can figure out, okay, how do we want to approach this? And sometimes we approach it very lightly. Say we just start with the laser, that’s it. Or sometimes somebody says, no, I want to really get in there and fix everything that’s wrong. Okay, well, we identified these five or six things that need correction. So let’s stage this in order. And that’s what we’ll do.
And everyone’s different. And then we have follow-up depending on what we need in two weeks, in a month, six weeks, not usually six weeks. Once things are stable, it could be every two, three months or four months. But in the meantime, I’m in the boat rowing, paddling with them. That’s the way I do it. I treat people, really, I try to treat people just like I would want to be treated myself, like I would want my family to be treated.
I do the very best. I love what I do, you know what I mean? I just love what I do and I try to do the best, highest quality. And it’s not that I’m perfect, not that I don’t make mistakes, ⁓ not that I know everything because that’s for sure that I don’t, but that’s my approach. So I try to be in the boat with the patient. As long as the patient’s paddling, I’m paddling just as hard, if not.
Bill Gasiamis (49:02)
Yeah, it sounds like at least if things, if you don’t make the right approach initially, there’s a whole bunch of tools and resources and things that you can kind of focus on. And one of the things you mentioned, again, you glossed over it, but I love that you do this is spiritual. Like it might be a spiritual journey that the person needs to take. And it’s so overlooked because people, you know, do have…
Dr Bob Hedaya (49:22)
yeah.
yeah, yeah.
Bill Gasiamis (49:30)
existential crisis after a stroke. it’s like a spirituality helps somehow for a lot of people ease, heal that, ⁓ help people move through, you know, the weeds and come out into the opening and then kind of see the opportunities and where they need to go next. And people don’t need to engage with somebody like you to go on a spiritual journey. That might just be something they’ve ever looked and they can just go, you know what, I’m going to pick up the Bible or ⁓
I’m going to learn about this particular ⁓ spiritual journey or whatever and go through it and do whatever it is that they need to do to kind of start beginning the healing journey in their own special unique way. It’s really important that spirituality gets addressed and it’s not glossed over. And I’m not saying that you did or I did or we do, but in the back of the minds, stroke survivors may not consider that being
important.
The Role of Spirituality in HealingDr Bob Hedaya (50:31)
Yeah, first of all, I’m passionate about spirituality. I mean, passionate because the truth, in my opinion, is that consciousness, your level of awareness is really consciousness is the foundation, the substrate of everything that exists. The material is an outflow from consciousness. So I could talk about this forever.
Not everyone is oriented this way. So, you know, I just saw a businessman, very successful businessman ⁓ last week. He doesn’t want to just, you know, get me back online. OK, I don’t want to hear this mumbo jumbo and I just can’t. I don’t want to delve into it. Just get me better. know. But other people are like, I want to find the meaning, you know, and it’s very important.
to find the when I think generally for most people finding the meaning in it is critical. And I’ll say one thing, my mother, may she rest in peace, was in the emergency room, probably 25, 30 years ago, I don’t know, something was wrong, she was in the emergency room for seven, eight hours or whatever, and some guy comes by and says, ma’am, can I get you a sandwich? And she says, oh yeah, please, please get me a sandwich.
He gets her a tuna fish sandwich, whatever it is, right? He leaves. She’s so grateful. She’s so grateful that she volunteers in the hospital for 20 years. Okay? This guy has no idea what he did and all the people that he helped through her, right? So you’re, you you and you’re not just you, but we, each of us in our small minds, we have no idea.
the impact we have on other people. So if it’s important to a person to have a meaningful life, understand that you don’t have to be running a company. You can smile at a stranger, change their day. There are things that you can do and you have an impact. Now, that’s a small consolation when you’re dealing with a stroke, obviously, but that’s when you kind of want to work to a meaningful ⁓ attitude and a good attitude. So yes, the spirituality is…
many people very important.
Bill Gasiamis (52:54)
David who brought us together ⁓ wanted me to meet you so I could interview you. that part of the role that he played in what happened to his wife ended becoming something that helped other people. Isn’t it interesting? The whole journey started on.
Dr Bob Hedaya (53:15)
Exactly.
Bill Gasiamis (53:20)
He contacted me because he wanted to make something good come of what happened to his wife, which I’m sure his wife was also interested in. And he said, you need to get Dr. Hedaya on because we need to share more information, make this stuff aware. so, and I’m like, well, that’s perfect. Of course I do. Whoever comes to me with that kind of information because they want to help other stroke survivors because he’s hoping that other caregivers that are in his shoes have a better outcome. They have more support. They have more information. They have more tools.
Dr Bob Hedaya (53:27)
Mm-hmm.
Bill Gasiamis (53:50)
That’s the spiritual journey. You don’t have to call it ⁓ Christianity, Judaism. You don’t have to call it something. You don’t have to label it, but that is what spirituality looks like in practice.
Dr Bob Hedaya (53:56)
Right.
Right.
That’s exactly it. That’s exactly it. And it gives me chills because, you know, I know his wife is suffering, you know, and ⁓ but she’s making really great headway, but it’s hard, you know. But look at look that he’s reaching out and he cares enough about other people and to and make her journey and what she’s gone through and what she’s learned be useful to other people. That’s it. That’s just beautiful. I mean, that that
speaks volumes about him and her.
Bill Gasiamis (54:32)
It does absolutely
and her and your work because your work is not unique. You’re not the only one doing this kind of work. I think there’s only kind of a small percentage of ⁓ medical professionals in the field that are practicing in this way. And hopefully that continues to grow. ⁓ If somebody wanted to, well, somebody lots of people are listening to this today. If anyone wanted to reach out ⁓ who thinks, you know, that
they might be able to ⁓ benefit from or go down this kind of approach. How should they go about that? What questions should they be asking of you, et cetera? Like how do they begin? Because this is a different conversation than I have ⁓ neurological injury, have aphasia. It needs to be positioned differently, this conversation.
Dr Bob Hedaya (55:29)
Tell me what you mean. I’m not really clear what you’re saying.
Bill Gasiamis (55:33)
If somebody wants to find a clinician who practices the way that you practice, you guys, for example, you know, you know, who thinks about the brain in a different way. What, what should they be looking for and what.
Dr Bob Hedaya (55:38)
Aha, I see, I see.
I would
say that they should go to the website for the Institute for Functional Medicine. And there’s a tab. This is find the practitioner. And make sure you look for a practitioner that is certified, fully certified. And then investigate the practitioners who are in your area and see if they experience.
in this area. there are not
I’m not aware of, there’s a guy somewhere in the Midwest here who’s using a laser, I believe. And then maybe other people that I don’t know about using lasers, but I’m not aware of anybody that I could say, go see this person for this quantitative EEG guided transcranial photobiomodulation. I’m not saying that that is readily available. It’s not. But the whole functional medicine thing, there are a lot of practitioners. And I think that’s the way to go there.
Just do your homework.
Bill Gasiamis (56:48)
Yeah.
Yeah. Cool. Your organization is whole psychiatry and the brain recovery center. Is that right? Okay. So the psychiatry part of it, ⁓ people might be listening and going, well, that doesn’t apply to me, the specific word specifically doesn’t need to apply to an individual to engage with you because, we’re not just dealing with the psychiatry part of somebody’s recovery.
Dr Bob Hedaya (56:56)
Yeah. Right.
Thank you.
No, no, we’re dealing, we treat psychiatric,
but we treat neurological. You know, I started as a psychiatrist. was, you know, certified by the American Board of Psychiatry and Neurology, but I was doing psychiatry. then, you know, just following, you know, learning and whatever, I ended up, you know, doing some neurology here. And so, but we didn’t change the name to the whole neuropsychiatry and brain recovery. Maybe we should, or maybe the whole brain recovery center or something like that.
So, you we do both, no, and if, and if, I can’t be helpful, of course, I’m going to tell people this, we really don’t want to waste people’s time, energy, money, et cetera. ⁓ But it’s, it’s been, you know, I have to say an amazing journey. And I would say when you follow for me, this is me, my life, following my passion of learning about the brain and understanding the brain and
Bill Gasiamis (57:45)
Yeah.
Dr Bob Hedaya (58:14)
looking for the fundamentals of how do things work and just there’s a common sense in medicine. I looked at the laser when I was reading that book and I was like, wow, ATP in the brain, that could really help the brain. How would I know how to make way to point at the laser? Okay, that’s just logic. ⁓ here’s a technique that could tell me. Wow.
It’s just logic, you know, don’t have to be genius. You’re just looking for truth. You’re looking for… It’s logic, common sense, right? But you’re trying to help people and get to solutions, right?
Bill Gasiamis (58:48)
Yeah.
Yeah, absolutely. As you, as we wrap up this final question I want to ask you specifically is, so you use the phrase good news for people who are struggling in the email that brought you here, right? In the conversation that we had. So what is that good news specifically and what should a stroke survivor who has been told they’ve plateaued or who has a fascia ⁓ that’s been called permanent.
Dr Bob Hedaya (59:08)
Mm-hmm.
Thank
Bill Gasiamis (59:22)
actually understand about what’s possible these days with where AI is going, with where medicine is going, with the kind of work that you do.
Dr Bob Hedaya (59:30)
Okay, so my biggest, ⁓ most of my experiences in the neurology era is in aphasia, Parkinson’s and dementia, early dementia, okay? And then I have some experience in strokes. Every stroke is different, obviously. ⁓ I would say this, the brain is incredibly plastic. ⁓ And when you challenge the brain,
and you give it all it needs, nutrients, light, hormones, get rid of the toxins, great stuff can happen. There is hope, there is so much hope. But it takes that attitude, you can’t say, I’m just gonna give up because that’s exactly the wrong attitude, all right? You have to have the attitude that says I can do it. Doesn’t mean you don’t have a bad day, of course you have a bad day, of course.
But you’re going to persist, right? You’re going to set that master awareness in your head that says, I’m going to do this. Or I’m going to die trying, OK? That’s it. I’m going to do it, or I’m going to die trying. And if you do that, there’s no end to where you can go.
Bill Gasiamis (1:00:47)
as we’re coming near the end, is there anything else that we haven’t discussed that we haven’t spoken about that we should mention before we wrap up?
Dr Bob Hedaya (1:00:51)
Thank you. ⁓
Yeah, think, you know, obviously I can’t treat everybody and obviously my methodology is pretty specialized. And so I’ve embarked over the last year on a couple of programs to try and train physicians. And I think people should know that let’s say you’re living, you know, the other part of this country ⁓ and you want this treatment, but you’re in Nevada or California or something like that.
But if you can find the physician there who’s interested in this, who works in the brain area, I can actually do a consultation and kind of guide the evaluation and the treatment and then make a plan and then hand that off and then I’m always available for consultation if needed. So we call these our educational consults. And then of course, if there’s any neurologists or psychiatrists who want to learn the method, we have actually a mentorship program we’ve been working on. Actually the former
⁓ head of education for the Institute for Functional Medicine and I have been working on developing this program now for a few months and we’re just actually tying it up now. So that’s available or will be shortly available if someone wants mentorship in this. And so those are ways I’m trying to get this out there because I’m just one guy.
Bill Gasiamis (1:02:15)
you’re still trying to get back to your retirement by the sound of things as well at some point.
Dr Bob Hedaya (1:02:19)
You know, I don’t know. It’s very hard to let go of something that you love. You love what you’re doing. You’re seeing great results. You’re helping people. you know, you get that. I don’t know. It’s hard to think of giving it up.
Bill Gasiamis (1:02:22)
It doesn’t sound like it.
I have that similar kind of sensation and feeling with the podcast. I’ve done 400 episodes and it’s really challenging to get an episode out every week. But ⁓ because of all the booking system and most of the things is automated, what happens is I look at my calendar and there’s another appointment for a podcast episode. And I find myself sitting in front of the chair and pressing record and then just there goes another Saturday afternoon or a Sunday afternoon.
Dr Bob Hedaya (1:02:47)
Okay.
Bill Gasiamis (1:03:03)
And my wife’s always asking me like, are we going to do something today? Are we going to catch up with that person or this person? I’ve got a podcast. Let me just sneak another podcast out and then I’ll get back to you.
Dr Bob Hedaya (1:03:14)
Yeah,
yeah, it’s, I can’t, it’s, you know, it’s a tough one. I love it, it’s a good problem to have.
Bill Gasiamis (1:03:21)
It’s a good problem to have.
Bill Gasiamis (1:03:26)
Well, that’s a wrap on my conversation with Dr. Robert Hedaya, psychiatrist, functional medicine practitioner and founder of the whole psychiatry and brain recovery center. The idea I keep coming back to from this conversation is a simple one. Your neurons may not be dead. They may just be dormant and dormant things can be switched back on. The reframe from permanent damage to treatable dysfunction is the same shift that changes everything for survivors who have accepted a ceiling they were never actually meant to accept.
If you want to explore Dr. Hedaya’s work, head to wholepsychiatry.com. If you’re looking for a functional medicine practitioner closer to home, the Institute for Functional Medicine at ifm.org and use their practitioner finder. Look for someone who is fully certified. I also mentioned a previous episode on hyperbaric oxygen therapy with Dr. Amir Hadani.
I’ll link that in the show notes because the two conversations sit alongside each other in a way I think you’ll find very useful. If this episode opened up something for you, please share it. Send it to someone in your life who is still searching for answers, be it a stroke survivor, a caregiver, a family member who needs to hear that the story doesn’t have to end at the plateau. Also, my book, The Unexpected Way That A Stroke Became The Best Thing That Happened is available at recoveryafterstroke.com.
And if this show has helped you, you can support it at patreon.com/recoveryafterstroke. I’m Bill Gasiarmus. Thanks for listening and I’ll see you in the next episode.
The post The Laser That Restarts Brains – Dr. Robert Hedaya on Photobiomodulation, QEEG, and Whole Psychiatry After Stroke appeared first on Recovery After Stroke.
Can Stroke Recovery Happen Years Later? The Griffith University Etanercept Trial AnswersIf you caught my recent video about UCLA’s discovery of the first stroke rehabilitation drug that rebuilds brain connections in mice, you know the incredible excitement it generated.
If you missed it, the link is in the description below. It’s definitely worth a watch.
Because of the huge response and the many messages from stroke survivors asking for more real recovery options, I wanted to take a deeper look at another breakthrough:
The Griffith University study on using a drug called etanercept to help stroke survivors, not just weeks after a stroke, but even years later.
And trust me, the results are eye-opening.
Today, I’ll walk you through what the study found, how it was set up, what it means for all of us, and where things are heading next.
What Was the Study About?Researchers at Griffith University in Australia asked a bold and important question:
Can etanercept help stroke survivors still living with chronic pain and movement problems, even many years after their stroke?
They weren’t looking for tiny improvements – they wanted to see fast, meaningful, life-changing results.
This study wasn’t designed for people who have just left the hospital. It was for survivors who had had their strokes at least six months ago, with some having had strokes over 15 years earlier.
Why Did They Do It?Chronic post-stroke pain, or CPSP, is one of the most devastating outcomes of a stroke.
It’s not just muscle pain. It’s deep nerve pain, constant, burning pain that regular medications like oxycodone or pregabalin often can’t touch.
Researchers now understand that this ongoing pain is often caused by inflammation in the brain, specifically driven by a chemical called TNF-alpha.
Etanercept is a drug that’s been used safely for over 20 years to treat arthritis and autoimmune conditions because it blocks TNF-alpha.
The Griffith team wanted to test whether using etanercept to block brain inflammation could unlock recovery, even years after a stroke.
How Was the Trial Set Up?This wasn’t a casual or loose experiment – it was a carefully designed, professional clinical trial.
Here’s how it worked:
- 26 stroke survivors participated.
- Ages ranged from 30 to 80 years old.
- Strokes had occurred 6 months to 15 years earlier.
- Every participant had moderate to severe daily pain (rated between 4 and 8 out of 10).
- All had hemiparesis, or weakness on one side of the body.
Participants were randomly assigned to one of two groups:
- One group received etanercept injections.
- The other group received placebo injections (just sterile saltwater).
Each person received two treatments:
- One on Day 1
- Another on Day 14
The injections were given near the neck in the perispinal space, allowing the drug to travel quickly to the brain.
What Were They Measuring?The researchers focused on solid, measurable outcomes:
- Pain levels – using a 0–100 scale combined with a faces pain chart.
- Shoulder movement – measuring how far participants could lift their weaker arm.
- Sensation – testing for improvements in feeling hot, cold, and pressure.
- Cognition and fatigue – although big changes weren’t expected here.
Participants were monitored closely for 30 days after their first injection.
What Happened?Here’s what the trial revealed:
Pain Relief 70% of the participants in the etanercept group experienced significant pain improvements. * Pain levels dropped by an average of 24 points out of 100. * 3 out of 10 participants experienced near-complete pain relief — often within 30 to 60 minutes* of their first treatment!
Meanwhile, the placebo group showed almost no change.
Mobility Gains 9 out of 10 participants in the etanercept group regained more shoulder movement. * 6 regained at least 60 degrees of motion. * 3 participants fully regained 180 degrees* — meaning full overhead shoulder motion.
Sensory Improvements Many participants began to feel heat, cold, and pressure better on their affected side — a strong sign that nerve function was returning*.
Side Effects* Only one major side effect was reported: one participant developed shingles and had to withdraw from the study. * No other serious adverse events were recorded.
What Does It Mean?If these results hold up in larger, longer studies:
- Stroke survivors could have a real option for reducing chronic pain and restoring lost movement.
- It could dramatically lower reliance on heavy opioid medications.
- Most excitingly, it shows that the brain may still be capable of healing years after a stroke — if inflammation is correctly targeted.
However, it’s important to remember:
This was a small trial.
Etanercept is not yet officially approved for stroke recovery.
And the treatment doesn’t work for everyone.
But it’s a huge, hopeful step forward.
A Word About Dr. TobinickIt’s important to acknowledge someone who helped make all this possible: Dr. Edward Tobinick.
Dr. Tobinick was the first to use perispinal etanercept for stroke survivors back in the early 2000s.
He was featured on 60 Minutes Australia in 2011, showing stunning recoveries that few thought were possible.
Despite facing skepticism, lack of pharmaceutical company support, and high treatment costs,
Dr. Tobinick kept pushing forward.
Without his work, many stroke survivors wouldn’t even know this therapy existed.
You can find the link to that original 60 Minutes interview in the description.
What’s Next?Because of all the interest from our community,
I’m reaching out to researchers at the Florey Institute in Australia.
They’re currently working on new therapies for stroke recovery, and I’ll update you on:
- Where their research stands
- What new options might become available
- And how close we are to real-world treatments for stroke survivors
Stay tuned, as soon as I hear back, I’ll share everything with you.
Want to Dive Deeper?If you’d like to read the full Griffith University study,
the link is in the description.
The brilliant researchers behind this study include:
- Dr. Stephen J. Ralph
- Dr. Andrew Weissenberger
- Dr. Ventzislav Bonev
- Dr. Adrienne Goodman-Jones,
and others from Griffith University and partner institutions.
They deserve real recognition for pushing this research forward.
Final ThoughtsIf you found this article helpful,
Please subscribe, comment, and share this post with someone who might need hope today.
And if you’re listening on Spotify or Apple Podcasts,
please leave a review. It helps more stroke survivors find this channel and this growing community.
The post Etanercept and Stroke Recovery: Breakthrough Griffith Trial Results You Need to Hear appeared first on Recovery After Stroke.
5 Years After Stroke: Recovering Her Voice, Her Memory, and Her Will to Walk AgainOn 29 April 2021, Cecy Galvan was doing what she had always done, working a client event, surrounded by people, moving at full speed. A celebrity publicist with a client list that included the Wayans Brothers, Cecy had built a career on being present, persuasive, and always on. Then she collapsed in a bathroom in Boston.
She was 47.
A bartender called 911. Doctors found a tear in her aorta. She woke up three days later with a scar and what appeared, initially, to be a second chance. But four months later, she was back in the hospital for aortic repair and heart valve replacement surgery. On 15 September 2021, as she came out of anaesthetic, she had two strokes, one affecting her speech and motor function, one involving her cerebellum. In the hours it takes to close a chest, Cecy’s life changed completely.
Five years later, sitting down to tell her story, she said something that stopped the conversation:
“I just told my friends the other day that my brain is finally back.”
When the Warning Signs Are Easy to MissThe week before her collapse, Cecy had been dizzy. Vertigo for two days, the kind that made her afraid to drive. It was during the COVID period, and going to a doctor felt like an unnecessary risk. So she pushed through, got on a plane, and made it to the event in Boston.
This is not a story about a woman who was careless. It is a story about how stroke symptoms, particularly in the lead-up to a cardiac event, can present as something mundane and easy to dismiss. Vertigo. Fatigue. A feeling of being slightly off. For Cecy, those were the only signals before everything changed.
Recognising early warning signs of stroke remains one of the most critical conversations in stroke prevention. If symptoms persist, even mildly, seeking medical review is always the right call.
What 5 Years After Stroke Really Looks LikeCecy’s recovery has been shaped by two distinct strokes, both occurring simultaneously during surgery. The effects are layered and ongoing.
Her right vocal cord is paralysed. She walks with a forearm walker indoors but has not yet been able to take it outside. Her core is still rebuilding, and her cerebellum, responsible for balance and coordination, remains affected. Her vision changed: she now needs glasses for reading, something she never needed before. For the first three years after her strokes, she barely remembers anything. She kept a journal and relied on her sister’s videos to piece together what had happened.
Her sister and brother-in-law became her primary carers. They modified their home, building a ramp, converting a shower for wheelchair access and showed up every day with a consistency that Cecy describes as the quiet foundation of her survival. Her parents, both in their late eighties, also cared for her until they passed her father at 90, her mother at 89, in the years following her strokes. The grief of losing them, layered on top of the grief of losing her former life, has been one of the heaviest parts of the journey.
“My whole life changed overnight.” – Cecy Galvan
And yet she keeps going. She does speech therapy exercises daily, recording herself and playing them back. She uses both hands, intentionally brushing teeth with her non-affected hand, rinsing with her affected one. She gets massages weekly. She reads and re-reads books her memory hasn’t yet retained. She is, in her own words, constantly doing the work.
The Myth of the Recovery PlateauTwo of Cecy’s doctors told her she would not walk again. One sent her an email last year to confirm it. A third told her she would improve within six months.
None of them has been entirely right. None of them has been entirely wrong. But the idea that recovery has a fixed deadline, that the brain stops responding to rehabilitation after a set number of days, is a narrative that does genuine harm to stroke survivors.
Cecy’s experience over five years is evidence against it. Her lung capacity has measurably improved. Her speech, which was largely absent for years because she was afraid no one would understand her, has progressed to the point where she is now giving interviews. Her memory, the one she describes as the most disorienting loss, has started to return not all at once, but in a way she can feel and name.
Neuroplasticity does not operate on a clinical deadline. The brain continues to find new pathways when given the right conditions: repetition, intention, rest, and time. Bill’s book
Bill’s book The Unexpected Way That A Stroke Became The Best Thing That Happened explores this in depth, drawing on both the research and the lived experience of survivors who were told they had reached their ceiling and then kept going anyway.
What Newly Diagnosed Survivors Need to HearCecy’s advice to someone at the beginning of their recovery is grounded in her own experience of those first disorienting months: the early period matters enormously. The first three to six months are when the brain is most responsive to rehabilitation, and the work done in that window has an outsized impact on long-term outcomes. But that is not where recovery ends.
What carries a survivor through the years that follow is not speed, it is consistency. It is doing the small things every day. Using the affected hand even when it spills water. Recording your voice even when you hate how it sounds. Crying a little, then trying again.
Cecy’s five-year goal is simple and unambiguous: she is going to walk again. She does not know exactly how. She does not need to. The direction is clear.
Keep GoingRecovery after a stroke is rarely a straight line, and no survivor should navigate it alone. If this episode resonated with you,
If this episode helped you, consider supporting the show at patreon.com/recoveryafterstroke. Every contribution keeps this content free and accessible for survivors who need it.
Because if Cecy Galvan’s story tells us anything, it is this: five years is not the end of recovery. It might be where it finally begins.
This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
The post The Brain Came Back – Cecy Galvan on Five Years After Stroke appeared first on Recovery After Stroke.
EECP Therapy and Stroke Recovery: Can a Cardiac Treatment Help Grow New Blood Vessels?When I first heard about EECP therapy in the context of stroke recovery, I was skeptical. It’s a cardiac device approved in Australia for stable angina and congestive heart failure. Stroke is not on the label. So why are we talking about it on a stroke recovery podcast?
Because the mechanism is fascinating. And the research, while still emerging, is pointing somewhere worth paying attention to.
In this episode, I sat down with Jack Clifford, a heart disease patient who discovered EECP therapy and began exploring its potential beyond its approved indications. What started as a cardiac conversation quickly became one of the most scientifically interesting discussions I’ve had on the show.
What Is EECP Therapy?
EECP stands for Enhanced External Counterpulsation. The treatment involves a set of pneumatic cuffs fitted around the calves, thighs, and buttocks. These cuffs inflate and deflate in precise synchrony with the heartbeat, inflating during the heart’s resting phase (diastole) to push blood back toward the heart, and deflating just before the heart contracts.
The result is an increase in blood flow and a specific type of fluid shear stress on blood vessel walls. It’s that shear stress that makes things interesting.
The Biology: Arteriogenesis and AngiogenesisTo understand why EECP therapy might be relevant to stroke survivors, you need to understand two terms: angiogenesis and arteriogenesis.
Angiogenesis is the sprouting of entirely new capillary vessels — the body builds small blood channels where none existed before. Arteriogenesis is different: it’s the remodelling of pre-existing, dormant collateral vessels into functional bypass channels. Think of it like upgrading a dirt track into a highway. The track was always there; the body just wasn’t using it.
When blood flow is obstructed, whether by a blocked coronary artery or a stroke, the body can, under the right conditions, activate these collateral pathways. The shear stress produced by EECP therapy appears to be one of the triggers that stimulate arteriogenesis. By generating repeated waves of increased blood flow, the treatment creates the mechanical signal that tells blood vessel walls to grow and remodel.
This is why cardiac researchers originally developed EECP for heart patients. But it raises a legitimate scientific question: could the same mechanism support blood flow recovery in the brain after stroke?
What Does the Research Say?A 2026 meta-analysis published in the QJM: An International Journal of Medicine examined 15 randomized controlled trials involving 506 participants, looking specifically at EECP’s effects on functional outcomes in stroke patients. The results showed statistically significant improvements, with EECP outperforming control conditions on standard functional recovery measures.
This is preliminary evidence, not a settled clinical consensus. The studies are relatively small, the methodology varies across trials, and EECP remains off-label for stroke in Australia. But for a therapy with a well-understood safety profile and an existing approval framework, 15 studies and 506 participants is not nothing. It’s enough to warrant serious discussion.
What I Discussed with Jack CliffordJack came to EECP as a patient, not a researcher. His experience with heart disease led him to explore the therapy, and he’s spent considerable time understanding the evidence base and connecting with practitioners. He’s not a clinician, and neither am I, but what we can do together is examine what the research actually says, what the mechanism actually is, and what questions remain unanswered.
In our conversation, we discussed:
- How Jack first encountered EECP therapy and what led him to investigate it further
- The difference between approved and off-label use, and why that distinction matters
- What the shear stress mechanism actually looks like in practice
- The existing network of EECP practitioners and how stroke survivors might access the therapy
- The questions both of us still have about where the research needs to go
Important Disclaimers
| EECP therapy is approved in Australia by the TGA for stable angina pectoris and congestive heart failure (ARTG Entry 376470). Stroke is NOT an approved indication. This article and podcast episode are not medical advice. Speak with your treating physician before pursuing any treatment. |
This episode is not medical advice. It is a conversation about an area of emerging research that I find scientifically credible and worth understanding. The goal is to help you ask better questions, not to tell you what treatment to pursue.
Where to Learn More* ecplocator.com a directory of EECP therapy providers * eecpbook.com is a dedicated resource on the treatment and its evidence base * recoveryafterstroke.com for stroke survivors looking for a broader community
Research cited: Zhao et al. (2026). Enhanced external counterpulsation for ischaemic stroke: a systematic review and meta-analysis. QJM: An International Journal of Medicine. DOI: 10.1093/qjmed/hcag010.
Therapy and Stroke Recovery: Can a Cardiac Treatment Help Grow New Blood Vessels?Bill Gasiamis sits down with Jack Clifford to explore EECP therapy, a TGA-approved cardiac treatment that may stimulate the growth of new blood vessels. Together, they examine the emerging research on angiogenesis, arteriogenesis, and whether this off-label approach holds promise for stroke survivors seeking to improve blood flow to the brain.
Highlights:
00:00 Introduction – EECP Therapy
06:06 Recognizing Health Issues and Seeking Help
09:50 Hospital Experience and Heart Health
12:12 Decisions Against Medical Advice
16:28 Exploring Alternative Treatments
18:06 Understanding Enhanced External Counter Pulsation (EECP)
21:58 The Mechanism of EECP
27:03 Personal Transformation Through EECP
30:29 Lifestyle Changes and Holistic Health
34:35 The Impact of Stress on Health
38:30 The Journey of Writing a Book
43:29 The Role of EECP in Heart Health
48:21 Raising Awareness for EECP Therapy
56:05 Exploring the Future of EECP Therapy
Transcript:
Introduction – EECP TherapyJack Clifford (00:00)
Mine was really severe. 100 % blocked in my widow maker, the left anterior descending. I’m 95 in my left coronary artery and in my right main, I am 80%. And I’m still that way today, but I can run a sub seven mile.
Bill Gasiamis (00:16)
Welcome to the Recovery After Stroke podcast. I am your host, Bill Gassiamus. Before we get into today’s interview, I need to share something important.
The topic we’re exploring today involves a medical device called an EACP, Enhanced External Counterpulsation Machine. In Australia, EACP is registered with the Therapeutic Goods Administration for the treatment of stable angina and congestive heart failure. It is not approved for stroke. What we are discussing today is emerging off-label research, not a treatment recommendation.
Everything in this episode is for informational purposes only. This is not medical advice. Please speak with your treating physician before pursuing any treatment, therapy or intervention discussed here. With that said, let’s talk about something that genuinely fascinated me when I started reading the research. Your body has the capacity to grow new blood vessels, not just small capillaries, but to remodel dormant pre-existing channels into
functional bypass routes. Scientists call this arteriogenesis. There’s also angiogenesis, the sprouting of entirely new Both processes matter deeply for stroke because stroke is fundamentally a blood flow problem.
Now here’s where it gets interesting. A cardiac therapy developed for heart patients, not stroke patients, trigger exactly this kind of vascular remodeling. And in 2026, a meta-analysis published in the QJM across 15 randomized controlled trials and 506 participants found that EECP
produced statistically significant improvements in functional outcomes for ischemic stroke patients. Now, that’s not proof. That’s not a green light to go and get an EECP, but it is worth a serious conversation. My guest today is Jack Clifford. Jack is a heart disease patient who discovered EECP therapy while managing his own cardiac condition and who has since spent considerable time investigating its potential.
beyond cardiac care. I should tell you, I was skeptical going into this conversation, but I’ve learned that skepticism without curiosity isn’t really skepticism. It’s just closed mindedness. So I read the research and then I sat down with Jack. So if you find this episode valuable, I’d love for you to grab a copy of my book,
The unexpected way that a stroke became the best thing that happened at recoveryafterstroke.com/book. And if you want to support the show, you can join Patreon at patreon.com/recoveryafterstroke. And I want to thank everyone who is supporting me on Patreon, especially the people that have been around for a long time and the people who have just recently signed up. I very much appreciate it. And now here’s my conversation with Jack Clifford.
Bill Gasiamis (03:19)
Welcome to the podcast.
Jack Clifford (03:22)
Thanks, Bill. Great to be here.
Bill Gasiamis (03:24)
Let’s give the listeners a bit of a background understanding of why you’re on the podcast. You’re not a stroke survivor, but we have something in common as ⁓ somebody who has been unwell before myself and you in the past. Tell me a little bit about your journey to the podcast So we just kind of give people an understanding as to how it is that somebody who’s not a stroke survivor.
Jack Clifford (03:34)
We do.
Bill Gasiamis (03:51)
how we ended up chatting together?
Jack Clifford (03:54)
Yeah, absolutely. So the quick version here is ⁓ I was on the brink five years ago of having ⁓ unsentable emergency triple bypass surgery. And ⁓ I chose a different path, which we’ll get to. ⁓ But you you have some level of placking if you have a stroke, typically, depends on the stroke, but that’s typically the case. And in my case, I had placking in my coronary arteries.
So it resulted in heart disease.
Mine was really severe. 100 % blocked in my widow maker, the left anterior descending. ⁓ I’m 95 in my ⁓ left coronary artery and in my right main, I am 80%. And I’m still that way today, but I can run a sub seven mile.
I can do some things that a guy that’s as blocked up as that should not theoretically be able to do. ⁓
Bill Gasiamis (04:49)
All right.
Tell me about life before the injury. What kind of work did you do? How did you go about life? What was generally a day like for you?
Jack Clifford (04:59)
Yeah. So I’m retired military guy. Um, so, you know, been in the military most of my life, um, retired about 10 years ago, a little over that. And, um, so I’ve always been a pretty fit guy. It wasn’t, you know, it wasn’t a fitness issue per se. Um, and, uh, I, I, I had kind of lost some of my self care because my wife had been going through some real significant medical issues that really required my full attention for quite a while.
And because of that, really stopped taking care of myself in the ways I had in the past for about 10 years. And when we had just moved to Florida, I started trying to take care of myself again. And that’s when I discovered all these problems.
Bill Gasiamis (05:44)
So
what does not taking care of yourself look like though?
Jack Clifford (05:47)
Gotta be in a couch potato and being on my computer way too much research and for ⁓ trying to help my wife get better and hold down a job at the same time and raise a family and all these other things that took the priority off of me in that sense that one should be taking care of themselves, meaning exercising, meaning eating the right foods, so on and
Recognizing Health Issues and Seeking HelpBill Gasiamis (06:09)
You know, caregivers tend to die before the person they’re caring for much more often. And it’s cause of that reason, right? Because time is really taken up by especially full-time caregiving with somebody’s in the house and they need caregiving. need care. The caregiver tends to neglect themselves in every way, shape and form and tends to ⁓ make it about the other person. And then the other person.
Jack Clifford (06:14)
I’ve seen that and heard about it.
Yeah.
Mm-hmm.
Bill Gasiamis (06:39)
seems to be doing okay, but the caregiver is struggling and doesn’t ask for help and doesn’t go and doesn’t go and get looked after. And then things tend to catch up with them and they become the ⁓ sickest person in that relationship.
Jack Clifford (06:55)
It’s
like that whole put your oxygen mask on first on the airplane type thing, right? Like, you know, we can’t we can’t give what we don’t have to give
Bill Gasiamis (07:01)
Uh-huh.
Yeah.
So you, did you notice, did you notice the steady decline in your health? Did you kind of go, I’m not feeling right. I’m a feel a bit sluggish like 10 years down the track, or did it just creep up on you? then you got to this point.
Jack Clifford (07:15)
It
really crept, it really crept. I, you know, like I had initially exercise induced angina, but it wasn’t much exercise that induced the angina. And then it very quickly progressed to trying to walk and getting out of breath and, know, at very basic walking speeds, just moderately paced, you know, anything anybody would do out in your neighborhood. ⁓
Bill Gasiamis (07:39)
Did you know that you
had an angina?
Jack Clifford (07:41)
I did, yeah. I didn’t have a big heart attack episode like some people have. I’m 100 % blocked. There’s no heart attack to happen, right? Because the stuff is, I’m so blocked that it’s just a pure blood flow issue. A lot of people don’t understand that that 50 % blockage is a huge risk for a heart attack because you’re gonna burst a plaque and then go from 50 % to 100 % like that. But you know about collaterals.
And if you have collaterals in place, the blood’s not getting flowing this way, you’re gonna recruit some lead oval collaterals to be able to just get by with your activities of day living. But if you don’t push yourself, you don’t know that you don’t have enough blood flow to do these other things.
Bill Gasiamis (08:22)
Okay, so you got to the point where you were so unwell as far as the blood vessels around your heart were so unwell, they were so blocked that angina led to another escalation or something happened that got you to the point where you realized, okay, things are not good. Now, tell me what angina is exactly and what it’s like to have it. How do you experience it?
Jack Clifford (08:39)
Yeah.
yeah, yeah.
I’d love to talk about that. Bill. at its most basic, it’s a supply demand mismatch. So, you know, the blood flow that’s supplying your heart ⁓ is adequate for X, Y, or Z activities of daily living. You know, walking around the house, doing the dishes, you might have enough blood flow for that, but you don’t have enough blood flow to go run a mile or even walk potentially, you know, or
Hospital Experience and Heart Healthbut it’s all about supply demand mismatch. And that’s about just the size of the pipes, you know, if they’re clogged up, how clogged up are they? And, know, ⁓ that’s, really it. So, and what it feels like is it’s scary because it feels like a heart attack. all like, what does a heart attack feel like? Well, there’s a thousand different sort of, ⁓ descriptions of it. ⁓ you know, radiating down your arm or nausea or something in your back, but.
you know, if it’s right over your heart, it’s unmistakable. And that’s at least my presentation of angina. And I think it was a pretty typical one is, you know, I have this weird kind of deep pain. initially, when I, when I started, you know, run, trying to run and got it, I thought, ⁓ you know, I just pulled a chest muscle weirdly over my heart. You know, I’ll stop and let’s see if it goes away. I come back, you know, no, same thing. Okay. Still not better. Let’s do it again. Another couple of days later, so on and so forth. I was just kidding myself, but
I didn’t know anything about the horror at that point. hadn’t had to research all this stuff and do all the deep dive.
Bill Gasiamis (10:16)
That’s the same crazy logic
that stroke survivors put to, I’m feeling weird. I’m dizzy. I’m going to go and lie down. I’m going to rest. It’ll be better later. ⁓ I’m too busy. I’ve got to go to work. ⁓ I’ve even had stroke survivors where somebody’s telling them you maybe you’re having a stroke, you know, just tongue in cheek and they’re like, yeah, no, probably not. ⁓ it’s the same crazy logic that we say about things that are unfamiliar to us that we cannot potentially.
Jack Clifford (10:25)
Mm-hmm.
Mm-hmm.
Yeah. Yeah.
Bill Gasiamis (10:46)
link to something so serious because we have no knowledge, we’re ignorant, right?
Jack Clifford (10:47)
Yeah.
Well, yeah, I think that’s really part of the key there is like most times with something as sudden as what you’re talking about or what I’m talking about in my instance, because it was pretty, pretty sudden, you know, weeks and months. ⁓ We went from being these, you know, healthy people that felt like we were on top of the world to all of a sudden not. you you didn’t have a frame for what not looked like. ⁓
Bill Gasiamis (11:14)
Exactly.
Yeah. That’s such an important comment. We don’t have the frame for what not healthy looks like and therefore you don’t know what you don’t know. So you don’t take any action. You just brush it off. Okay. I hear you. All right. We got to the bottom of the stupidity behind a lot of my decisions as well to avoid going to hospital for a week, et cetera, the first time. ⁓ So you end up
Jack Clifford (11:24)
Exactly.
That’s it.
Bill Gasiamis (11:43)
being really unwell on this particular date. Kind of what is that day like? Explain us.
Jack Clifford (11:46)
Yeah. Yeah.
Decisions Against Medical AdviceSo I got tight. I, I, I’ve been a biohacker for a while. So that’s probably the only reason I’m here talking to you because I went off the beaten path really far off the beaten path to get to the place where I know what I know and I have to share what I have to share. ⁓ because I’ve been trying to help my wife get better for some significant issues, including a really bad traumatic brain injury.
And some other things and doctors didn’t have the answers for those so we had to we had to kind of biohack our way out of some things I was comfortable back. I’m saying that to say my wife got me a Chili pad for my bed because you know been trying to biohack sleep for a while and the colder environments to sleep are you know better to some degree at least in theory ⁓ and so Yeah, correct
Bill Gasiamis (12:32)
Chili meaning cold, not spicy.
Jack Clifford (12:37)
Yeah, correct. A chili pad as in the cold. So it’s a device that just, you know, cools your bed off. And so I crank that down to 55. She got it for me for Christmas. So Christmas day Eve, I’m like hopping into bed, like I’m going to sleep really well tonight, you know, and I woke up at four AM like, Oh, you know, I thought that was the big one because it felt that way. I a dead sleep woke me up with, with intense chest pain.
And I knew something was going on, you but I was kidding myself. I hadn’t talked to family about it. You know, I hadn’t shared anything about what was going on with anybody. So at this point I’m like, oh my goodness, you know, and I could be dying and have not had, you know, just been an idiot the whole time. So I rushed to the hospital and I didn’t have a heart attack. I just made it so cold that I made my heart work and that supply demand mismatch was happening all night long in my sleep.
Bill Gasiamis (13:15)
Mm-hmm.
Jack Clifford (13:31)
And so it got to this, you know, a giant, creeps up, you know, it’s like, can feel it. And then if you push it, you’re like, can really feel it. Well, you know, I woke up out of a dead sleep going from not feeling it when I went to sleep to, to feeling it to the extreme when I woke up. Um, but that’s when they gave me the, uh, the, uh, nuclear stress test with a treadmill test, right in the hospital. And it was, it was really bad. They can’t quantify your blockages with that, but they can tell you that, you know, you’re
You’re kind of screwed. And I was like really screwed. Like it was 47, but they said I was one of the worst I’d ever seen. ⁓ yeah. So I had all weekend to think about it, you know, cause I was a Friday, fortunately, and they could, they weren’t going to do the heart catheterization until Monday and the doc, you know, I was signing consent forms for them to do bypass surgery and it was pretty clear that the odds of it getting stented was not really good, but that’s what you hope for. Right. And most people are like, we’ll just get a step.
once then in you’re fine. And ⁓ in my case, it wasn’t looking likely. And my mother had had bypass surgery five years before that. And I watched her cognition after the bypass surgery just declined to the point where she’s in memory care now. And she had gone from being this vibrant book author of multiple books and you know, she was a hypnotherapist and she’s helped a lot of people in her life, done a lot of amazing things, but ⁓ she never.
she never really came out of the bypass surgery as her whole self and pretty quickly was just completely not herself at all. ⁓ So I wasn’t ready to come back. Now she’s 76.
Bill Gasiamis (15:03)
How old? How old’s your mom?
Yeah. I know with people that are older, ⁓ heart surgery can lead to cognitive decline and there is a link there. There is a number of it’s well researched. It’s a risk. ⁓ not one that you’re probably aware of and that they talk about much, but it definitely is a thing. so, okay. You’re, you’re you go to the hospital. They realize, ⁓ the
Jack Clifford (15:15)
Mm-hmm.
Bill Gasiamis (15:37)
charts are not looking good. ⁓ They do the tests. They suggest that what they can offer you is bypass surgery.
your, and you’ve got a weekend, think about it and you, and you go home, do they go, do you go home with medication and joining the medications to keep the blood flowing with anything? What do they do?
Jack Clifford (15:51)
Mm-hmm. Where’d you go? Yeah, such a blessing.
No, no, because I
was leaving against medical advice so they weren’t going to help me, right? And I actually said to the doc, said, you hey, I’m new here because I just moved a couple of months ago to Florida. And I said, can I come see you? And I didn’t have a cardiologist. I didn’t need one before this. And he says, if you live that long, just walks out. So I was on my own at that point. There was no resources of institutional medicine. I had to go find resources myself.
Exploring Alternative TreatmentsBill Gasiamis (16:28)
Wow. Things are pretty wild in Florida. If you live that long and he walked out.
Jack Clifford (16:30)
Yeah.
Yep. That’s exactly what we said. It’s a very sobering moment for me. Yeah.
Bill Gasiamis (16:35)
And you walked out. Yeah, and you walked out.
Far out, man. So what’s the thinking behind walking out of that? Because I understand ⁓ that there are very few things that, like my situation was different, right? But I’ll give you kind of my thinking behind the, I’m gonna walk out routine. It’s like, there is a part of me that sort of says, I don’t need to subscribe to all that medical stuff, all the nonsense. I wanna try and avoid the medications. I wanna do all of that.
Jack Clifford (16:41)
Yeah.
Yeah.
Bill Gasiamis (17:07)
That means I’ve got to do some work to get to that point, right? I’ve got to make sure that I’m eating well. I’m sleeping well. ⁓ I’m exercising. ⁓ I’m not overweight. I’m not smoking. I’m not drinking. Like there’s a responsibility that goes with, don’t want to take that medication. Right. And one of the other things is that, ⁓ if it wasn’t for the medical industry, I would not be here recording this, ⁓ podcast. Yeah. So there’s this big thing, which is.
Jack Clifford (17:31)
Yeah. Double-head sword, right? Yeah. Yeah.
Bill Gasiamis (17:37)
They’re not fixed. My brain is not getting fixed unless they go in and take out the faulty blood vessel and potentially risk all the complications that, that I got the ones I got, but also the ones I didn’t get, which many people get, which is far worse deficits than what I visible on me. So, ⁓ I’m, you know, I’ve never met anyone in my time who hasn’t
Understanding Enhanced External Counter Pulsation (EECP)who has been through the medical ⁓ system, who hasn’t benefited from it in a way that’s sort of sustained their life, supported their life, lengthened their life. Like everyone that I’ve interviewed has always gone through the medical system and has saved them, supported them, helped them, right? And you’re going to, the first place to get help you’re going to is a hospital, right? You ring up and you go, I’ve got to go.
Jack Clifford (18:22)
Yeah.
Bill Gasiamis (18:31)
to the hospital because I’m feeling like I’m having heart attack. You get there, they confirm it, and then the place that you go to for help is the place you walk out of. What’s the thinking? Yeah, yeah. You have the angina, the blockages. Yeah, you got all of that.
Jack Clifford (18:41)
Well, I didn’t have a heart attack. That’s a really important nuance point. you know, I’m sitting in the hospital all weekend.
there was nothing at risk in an emergent moment for me. My heart wasn’t, you know, I wasn’t going to lose heart muscle if they didn’t do something. Like my mother’s instance was different. She had a heart attack. She probably needed the bypass surgery. It was really hard on her, obviously, like we talked about, but in my case, I had time, but they didn’t treat it like I had time, right?
Bill Gasiamis (18:54)
Okay.
Okay.
Jack Clifford (19:10)
They treated
it like, we’re gonna go in and take care of this thing for you rather than you have time to explore other options when I knew in fact I did. So it might be that getting bypass surgery is the right move for some folks, but it also might be the right move for you and me. We’ve already discussed that you take care of yourself so you never get in that situation. And yeah.
Bill Gasiamis (19:32)
Yeah.
And this is not a interview about do as I say, this is not that interview, right? What this interview is like one person’s experience and what they did. That’s it. We’re not giving medical advice here. We’re not telling you what decisions to make. We’re not telling you any of that stuff. This has got nothing to do with advising anyone to do anything, but what it has got to do with is what either you discovered
Jack Clifford (19:45)
Yeah. Right.
Bill Gasiamis (19:58)
or you knew before and put into action or what you discovered after you left the hospital that weekend. So take us through the next sort of phase of I’m taking responsibility for this and I’m going to take advantage of something that is documented scientifically and proven.
Jack Clifford (20:03)
Yeah. Okay. Yeah. Mm hmm. Yeah.
Yep.
Yeah. And you know, like, so I’ll go into that phase, but, but I just want to share this thing because, know, you, you pretty much already told me when you first heard EECP, you like EECP what? Right. And most doctors are EECP what? Basically every patient is EECP what? And it’s, it’s just, it’s really not going to lie. really bothers me because this, this, this therapy is, is so well-documented. It’s, it’s, it’s FDA approved. It’s not controversial.
Bill Gasiamis (20:25)
Mm-hmm.
Jack Clifford (20:43)
⁓ it just anyways, okay. So, so, so yeah, so I leave the hospital and the only reason I knew about a EECP was because when my mom had her heart attack, I listened to a podcast by Ben Greenfield. He’s a pretty, you know, pretty high-level guy, right? And that had been, that was like 2015. And I just heard mention of it. was like, it was maybe like two minutes of the, of a 60-minute podcast at most, but I was like noted. So I looked into it from my mom. The closest provider was two hours away and you got to go 35 times and my mom isn’t going to drive.
35 times, you four hours round trip. It wasn’t gonna happen, so we moved on, but I just sort of knew about it. And when I say knew about it, I didn’t know, Bill, like what it actually did or how it worked. I didn’t look into it at that level. just, you know, like assessed the situation. I was like, okay, there’s something out there. That’s it. Okay, yeah. It stands for enhanced external counter pulsation. And you want me to go into a little bit about how it works? Yeah, okay, so.
Bill Gasiamis (21:27)
Hmm. And what is a ⁓ CP stamp? What does it stand for?
Yeah, yeah, let’s do that, yeah.
Jack Clifford (21:42)
So EECP involves lying on a bed. From the patient experience, you’re lying on a bed. You have ⁓ cuffs wrapped around your calves, your thighs, and your hips. And inside those cuffs, there are little air bladders.
Bill Gasiamis (21:55)
those cuffs,
are they like blood pressure cuffs?
The Mechanism of EECPJack Clifford (21:58)
Yeah, like big giant Velcro blood pressure cuffs. Yes.
Bill Gasiamis (22:02)
Okay, so like they’re much bigger than a regular cuff, which is just over the bicep. Okay. All right.
Jack Clifford (22:04)
Yes.
Yes. Correct. yeah,
just that’s the right way to think about it. you you cinch them up, you’re getting really snug in this thing, but it looks like a giant pantsuit, you know? ⁓ And you lie on the bed and then you get a three lead EKG on you. It’s here, here, in here. And then in between heartbeats, the machine…
inflates compressed air into those bladders at 1.3 psi to start with, which feels like kind of a gentle massage. And then the pressure can be increased in increments of 0.1 psi all the way up to six, which feels like the exact opposite of a gentle massage. However, if you go slowly, your body accommodates to that pressure and that pressure feels different, both over one session and over multiple sessions, meaning
you might not get to six your first session, that’s unlikely, but as you do repeated sessions, you’ll increasingly get closer to six earlier in the treatment and be cumulatively more hours at those higher pressures. And what’s happening is all the blood, not all the blood, a significant amount of blood from your lower body is being pushed up in between heartbeats and it’s causing this phenomenon called sheer stress in your vascular systemically.
And wherever there’s pressure differentials in the body, it’s giving a stimulus to grow. It’s saying the pipes are not big enough, you gotta grow. We’re trying to put through more than is gonna fit. The body’s like, wait a second, it’s not big enough. But growing things in the body takes time. And so you need those repeated sessions. Like I mentioned, T.R., before we started recording, it works just like cardiovascular exercise, but at levels humans can’t do on their own. ⁓ And so, yeah.
Bill Gasiamis (23:52)
That’s important to talk about. so
just for a moment, we’ll talk about that. Like it works like cardiovascular exercise. So the idea with cardiovascular exercise is that what, does cardiovascular exercise do that’s similar to EECP?
Jack Clifford (24:04)
Sure.
If you’re out running, when you hit that stride on your feet, you’re doing that same thing, right? You’re ⁓ sending blood up, right? And then your circulation, your heart’s beating twice as fast maybe than it normally is, or substantially more than you’re just sitting here heartbeat is. And that’s because the heart is responding to the environment around it and saying, I gotta get…
a lot more blood, a lot more places. So I gotta work a lot harder. you know, is maintenance. So collateral blood flow. have alternate routes that we can use that lie dormant throughout our body. And those collaterals, if they never get used, they honestly, they get weaker and they close off, but they also can be reopened, you know? And then you can grow more of them. And…
Bill Gasiamis (24:38)
And what’s the result of that?
Uh-huh.
Okay, so there’s blood vessels that get
less ⁓ blood flow because people are sedentary or people aren’t doing the type of exercise that would activate those blood vessels, for example. And then what in theory, not in theory, and then what happens in cardiovascular exercise, the body goes, we need more blood flow, let’s open up.
Jack Clifford (25:12)
Exactly.
Bill Gasiamis (25:26)
other areas where normally blood flow wouldn’t be required or doesn’t go. And EECP kind of mimics that mechanism.
Jack Clifford (25:27)
Yeah.
Exactly. Yeah, but not kind
of, it’s really important just to note, cause I don’t want, I don’t want any of your listeners thinking, well I’m just going to go run more. Right? I mean, by all means do that safely. You know, the dose always makes the poison with everything, but, but don’t think that you can, you can just go do this. You can do it to a limited degree with exercise, but you’re not going to grow, you know.
that I didn’t have that before. And I like it because it shows you like the world of the possibly or it might be a little unsightly, but it’s feeding my brain. EECP has changed my cognition in addition to my heart, you know, my pelvis and my kidneys and my liver. you know, like it’s, it’s optimized blood flow systemically. Um, yeah. Yeah.
Bill Gasiamis (26:19)
Okay, so let’s go back to the cuff, the cuff
that we put on and then what happens.
Jack Clifford (26:24)
Yeah.
Yeah. So, so you just lie on the machine. Typically you do 35 hours on a machine for a course of treatment and one hour a day is a typical, you know, five days a week. That’s just typically you’re going to the doctor. There’s lots of other variations of that, but that’s the typical course. And that’s the most well-researched course. And, ⁓ you know, over time, usually about halfway through those 35 sessions, if you had angina, you’re going to notice a difference, but
Personal Transformation Through EECPyou know, they use this to treat dementia. It’s a well studied in dementia. There’s a recent study in the US that was profound, a year-long study, a hundred demented patients, roughly a hundred non-demented or a hundred treated patients. Everybody had dementia and a hundred CHAM patients, placebo. The demented patients that got an EECP, they all got better when we know dementia, people get worse in a year, right? They all got better, all of them. And yeah, so that’s like, you know,
similar phenomenon erectile dysfunction, similar phenomenon kidney disease, similar phenomenon stroke recovery. So, you know, these are studies. I’m not making it up. It’s just literally like really well documented. It’s not.
Bill Gasiamis (27:33)
studies
that we can get a hold of and put in the show notes, link to the show notes.
Jack Clifford (27:36)
Yeah, go
to to EECPLocator.com and all these studies are there. ⁓ Yeah. So what I did is in the U.S., I, you know, it’s really hard to find. so I couldn’t find it. I had to, I had to call around and like, I could find a few doctors, none of them near me, but a few of them that would had machines, but they would only use them after everyone had failed stints and failed bypass and they had nothing else to offer them, which makes no sense. But that’s how the insurance reimbursements work.
Bill Gasiamis (27:41)
Okay.
Jack Clifford (28:04)
That’s the only time they’ll actually pay for it. So that’s what they say it’s good for, but that’s not what it’s good for. That’s just what they can get money for, I guess. but, so I had to drive three hours and take a chance on a doctor and stay in a hotel to get my treatments. And it was really difficult. I mean, I ended up buying one of these machines and got it at my house and I’ve just been using it for the last five years. So, you know, 35 hours was great, but I was pretty bad off. Now I got about 700 hours and, uh, you know,
more hours is just greater stimulus to the body to grow vasculature, right? And I mean, I…
Bill Gasiamis (28:38)
how do you know that you’ve grown? I know there’s this ⁓ feeling or this change that happens in the person. ⁓ Like you said, dementia, ⁓ people who experienced dementia have a better outcome later or a change in the way that they’re brain working, et cetera. can you see the, is there a way to see the difference between the blood vessels and
Jack Clifford (29:02)
You can’t, you can’t image, could image
on a, on a cardiac pet would be like the only imaging or I guess, you know, if I went back and did a stress test again, you would, you would be able to see, cause it’s not quantifying specific arteries. It’s, quantifying the total volume, but I tried that they were, actually wouldn’t let me, they said it’s not safe because you have it at a stent or a bypass. So I went back to the same place that I got it, you know, and I was like, literally they put me through the imaging machine. gave me the dye and then they got
Lifestyle Changes and Holistic HealthI went to go on the stress test and the same doctor was there and he refused to tell me to go. So I like, wanted to say, hey doc, let’s go for a run. Cause like, you’re not going to keep up with me, but you know, so I, I didn’t bother with that, but I’ve got my own, you know, I did my own little stress, stress test with a treadmill, right? I started, I was getting chest pain. I found out where I can induce angina and I try and say just below it, you know, so I know where it is, right? I was 2.2 miles an hour. That’s not a fast walk.
And then after the first 19 sessions where I was staying in the hotel, I got up to 2.7. That’s a really big difference even if it doesn’t sound like a lot. And then I got my machine and I kept going. And then within a couple of months, I was starting to do a running stride. And I could keep that up, no angina. I know where angina would come in. I had time calculations and everything. And then eventually, now I can run.
comfortably 6.5 mile an hour pace for quite a while, know, push it up to 14 miles an hour for 30 second sprints and you know, like all kinds of stuff. So, ⁓
Bill Gasiamis (30:38)
How long before
you break the two hour barrier for the marathon? Like was recently done. Maybe, maybe the more blood vessels, the more blood flow. Maybe you can get there.
Jack Clifford (30:42)
⁓ I got zero interest in that. Yeah.
I think so
though, I think those Kenyans should be ⁓ hopping on these EECP machines and they’re I mean, they’re already amazing but.
Bill Gasiamis (30:58)
Well, you want the Kenyans to just completely own marathon running for the rest of eternity. It’s unbelievable what they did. Right. Like I imagine that there is something else going on there, but I imagine blood flow, oxygenation, more blood vessels. Like it’s got to potentially be a thing. reckon if you do a check between the last guy, me, who’s going to like 50 hours before you get to the other side and those dudes, there would
Jack Clifford (31:03)
Yeah, yeah, it’ll just be a Kenyan
Yeah. ⁓
Bill Gasiamis (31:27)
definitely be a difference because they’re exercising all the time, right?
Jack Clifford (31:31)
Sure, yeah, they’re pushing the collaterals as wide open as, know, whatever, whatever a human can do on their own, they’re doing it to the max to, know, the same phenomenon that EECP is doing for folks lying down. You know, they’re doing it to whatever the max you can without the machine, I would say.
Bill Gasiamis (31:48)
So this is a bog standard human body task. Like it just does that all the time. I have heard the blood vessels can reroute in the brain when somebody experiences a blockage and then, and it’s not useful at the time of the blockage, obviously, and it causes potential cell death when somebody has a stroke. But then later on.
Jack Clifford (32:11)
If there’s too much blood,
the revascularization, yeah.
Bill Gasiamis (32:14)
Yeah, so
EECP can kind of occur naturally and then it can support as much of the surrounding tissue as possible so that it doesn’t all die off. ⁓ So what you’re talking about is just encouraging EECP ⁓ to happen more than it would normally happen by ⁓ inducing it through this device where people ⁓ get sort of strapped in and then
Jack Clifford (32:23)
Yeah.
Bill Gasiamis (32:43)
the machine runs, what does it run like a program? Explain how that works.
Jack Clifford (32:47)
Literally,
it’s just air pressure. got different pumps to pump the calves, the thighs and the hips up. And then it’s really just about the timing, right? It’s got to hit it at the right interval of your heartbeat. So it’s at the right place in diastole where your heart is at rest. that timing is very, crucial. And that’s really…
Yeah, it’s not, it’s very old technology. The machine I have was built in 2009. You know, they have new machines that are portable now that I’m working with some of the manufacturers to actually, you know, make these available in the U S because there aren’t any in the U S but they do have portable machines that don’t require a bed. You could get treated on your couch. You could get treated, you know, on your own bed, uh, lying on the floor, I suppose. Um, so, you know, we’ve, we’ve really like technology hasn’t
Bill Gasiamis (33:19)
Wow.
Jack Clifford (33:42)
slowed down. just China’s like taking this thing and you know, have a basically every Chinese hospital has several of these machines and they treat patients in the, in the room with us. It’s, part of their standard of care for all kinds of different, different diseases that they’re treating. You know, and it’s adjunctive to just about everything. There’s nothing that you couldn’t do EECP with, right? ⁓ yeah.
Bill Gasiamis (34:03)
Okay, okay, so.
How do you experience your body differently now? And actually, let’s go back actually, how long has it been since you came across this, decided to get the first treatment, implemented yourself ⁓ at home and then how do you feel different now?
Jack Clifford (34:08)
Oof.
Yeah, it’s been five years
and four months now. And every since like, this is this is a little hard part to quantify, because there’s been a lot of brain changes to from this, right? So so I don’t even like feel like my 47 year old self who was in the hospital, that feels really like somebody else to me. You know, it’s a version of me, I suppose, but I can’t really relate to that person. Because I like a small example.
The Impact of Stress on HealthI used to sleep eight to nine hours a night. That was my normal, my whole life. I was generally like the guy that would come in the latest. You could come to work. was the guy that came in the latest. You And now I get up at two 30 most mornings and I’m like, like rare to go with energy. I’m, you know, I’m working out doing resistance training. I’m reading, you know, I wrote a book, I’m writing another book. I’m writing a book on rectal dysfunction as it relates to this phenomenon, because that’s a whole other, you know, case study.
and I work a full-time job and I just have an incredible amount of energy basically all the time. My mood is way better. My sense of touch is really different now. I give a lot more hugs because it feels really good. ⁓ My sense of smell and taste and…
You know, hearing, you know, I used to like have to go to the bathroom at night sometimes, you know, wake me up to go to the bathroom. Long gone.
Bill Gasiamis (35:47)
So at the same time though, it sounds like also you might have changed other things as well though, right? So what else have you changed in the meantime?
Jack Clifford (35:55)
sure. Yeah. Yeah.
Yeah. It hasn’t just been EECP. Absolutely. you know, really good supplement routine. ⁓ Pretty extensive, but, you know, managing my lipids, for example, I take a thousand milligrams of niacin twice a day. I’ve been able to bring my triglyceride to HDL ratio to kind of an optimal one-to-one, using fish oil and some other things. ⁓ And, you know, I…
I really stay away from carbs for the most part. I like to eat keto, but I like it to be what I call clean keto. So I’m not like pounding keto ice cream or all these things that are, you know, they taste good and yeah, they’re keto, but they got all kinds of oils in them that aren’t really good for your body. ⁓ And, ⁓ you know, I’m big into moving and being active and, you know,
having an engaged social life as much as possible as well. I mean, I think that’s a very underrated thing. That’s actually an area I struggle in because I’m working so much, but you even this helps just, you know, getting to know people even online. But, ⁓
Bill Gasiamis (37:04)
It sounds like you haven’t re it doesn’t sound like you’ve reinvented the wheel. Like everything that you say is things that people take for granted that if they implemented would improve their life before EECP. We’re talking about EECP today, right? But just those things alone would make a massive difference to somebody’s experience. And that’s kind of the message that I’m trying to kind of get into the
Jack Clifford (37:17)
Totally agree.
I thought it a good
Sure.
Bill Gasiamis (37:30)
⁓ minds and hearts of the stroke survivors who I interview and who listened to the podcast. My book, I’m going to, we’re going to talk about your book in a sec, but I’m going to talk about my book. My book, when I wrote it, I thought I discovered all these things that people, should know about that no one knows about, but it’s not true in here is mindset. ⁓ there’s a chapter about emotional intelligence. There’s a chapter about nutrition. There’s a chapter about sleep. There’s a chapter about community.
Jack Clifford (37:32)
Yeah.
Yeah. No, please.
Bill Gasiamis (38:00)
⁓ that’s just the five that I can just rattle off the top of my head right now. And you’ve already mentioned that in the last few minutes, that’s exactly the things that you mentioned. And people take it for granted how much that improves your overall health. Right.
The Journey of Writing a BookJack Clifford (38:13)
That’s so true. And also
what’s wrapped up in the wrapper of all of those things that are threaded together is stress, right? ⁓ If you do all of those things, right, you’re lowering stress. How did I get heart disease at 47 when it happened to my grandfather in his late 60s and my mom in her mid 60s and it happened to me at 47? And we know it didn’t happen at 47. It was years earlier and I realized it at 47. Stress, you know? Like I was the guy that took on a lot.
Bill Gasiamis (38:38)
Hiding earlier.
Jack Clifford (38:44)
and had some traumatic things happen in my life and whatever, and I don’t need to go into that. But I always felt like it was all rolling off my back. Like, you know, I’m fine. know, like I didn’t, and there are reasons why I felt that way. ⁓ However, at the end of the day, I know that I wasn’t processing. There was so much I did not process. And I didn’t learn how to like have really good boundaries and that, you know, begot more stress because of those lack of boundaries and, but stress, right? You know, like, but if you have good
good social life and healthy people in your lives, that takes stress off. Eating the right food takes oxidative stress off your body. You could go on and on, but I think stress is gonna kill you before anything else.
Bill Gasiamis (39:17)
you
Yeah. I love
that you said that. I love what I love that. That was the answer that you gave when I said, what else did you do? Because it’s not just, you know, it’s like, I’m going to eat well, but smoke, you know, I’m going to eat well, but drink excessive amounts of alcohol. Like, no, it doesn’t work. You know, you can’t do that. Yeah. can’t do. Yeah. Small.
Jack Clifford (39:42)
No, you gotta do it all in concert. It’s the layers, right? Yeah.
Bill Gasiamis (39:49)
numbers, know, the percentages they add up, you know, 1 % here, 1 % there all adds up and you get a result at the end of it. Okay. So, so you’re you’ve gone, I’m going to see if I can grow new blood vessels to support my heart. And what you’re found between the time that you went to hospital around five years ago to now is that the angina has
Jack Clifford (39:55)
Yeah.
Mm-hmm.
Bill Gasiamis (40:17)
⁓ improved, they’ve gone away. The heart has improved, I beg your pardon, the blood flow. And have you had a medical examination since then to do other comparison?
Jack Clifford (40:28)
Yeah, I have.
Yeah, I’ve got a cardiologist. I haven’t seen him and I’ve talked to him the other day because I talked about the book, but I haven’t gone to see him because he’s a plane flight away. But I’ve been worked up for the crowded intermediate thickness. You might be familiar with that as it relates to stroke. okay, well, they just measure your crowded arteries and look at the placking in your crowded arteries as a proxy for your systemic plaque burden. And flow mediated deletation, is they totally occlude the…
the arm with a blood pressure cuff and then see how quickly you can refill it after, you know, like, it’s like five minutes of this, your hand is completely numb. And those all, you know, workups were good and that was after a couple of years of treatment. You know, I tried to have that stress test, like I mentioned, but you know, now I just see my primary care, you know, he’s a good guy and he runs on my lipid panels and, ⁓ you know, so I’m definitely monitored, but.
What I haven’t done is gotten re-imaged because I don’t want to put extra dye in my system. Sure, somebody wants the images because they don’t believe me, but I’m not trying to sell anybody anything here. I’m just trying to spread the word on something. If somebody doubts my honesty, they can, it’s fine.
Bill Gasiamis (41:38)
I know what you mean, Jack. I know what you mean. I and I asked you because yeah, I would love to see that before and after. would love to see the blood flow. What’s happening, watch change. would be amazing. story to tell, but I also went out of my way if I could to avoid having more dyes and all that kind of stuff injected into my body. I totally get it. It’s okay. Yeah. ⁓
Jack Clifford (41:49)
Yeah.
Yeah. Yeah.
Bill Gasiamis (42:01)
Okay. So you wrote a book about it. Like, what was the idea behind the book? What were you thinking? Show us the one that you got there with the old book cover. And then I’ll include the new book cover in this image as we chat.
Jack Clifford (42:06)
yeah. Yeah. Yeah.
Yeah.
Thanks. Yeah. So I started writing this book, in, know, ⁓ November timeframe, ⁓ after I mentioned to you, so my, my friend came down, ⁓ and stayed with me for 13 days and he had had some stroke damage five years before that was, you know, his whole right side, he just had like numbness and then pain. And then, you know, it this weird cascade of symptoms so bad, you know, sometimes he couldn’t sleep from it. And so
All the time he took off work he could he came and he used the machine three times a day and then he left pain free and like nothing else had worked and then this worked and I didn’t per se expect that I but I was like, you I know it does stuff. It’s helpful. But anyways, when I saw that, you know, I really started digging even more because before that I was like, well, Jesus is amazing. But maybe it’s just me, you know, and and anyways, so, ⁓ so then I, you know, I just started writing the book one day and
The Role of EECP in Heart HealthYou know, my mom was a book author and I always wanted to write a book. didn’t really have anything particular to write about and all of sudden I do. So I’m like, you know, let’s see what happens. And, uh, and you dig into the research more and more, and you’re just like, increasingly frustrated by how everyone has known about this. And yet, you know, they don’t promote it. They don’t talk about it because it’s inconvenient. You know, and I’m going to get a little, try not to get like soapboxy here, but
Bill Gasiamis (43:36)
Do
it, do it, go for it man.
Jack Clifford (43:37)
Okay,
okay, because, you know, cardiologists will say it, some of them, the ones that are honest, they’ll be like, like mine. He says, I was making obscene amounts of money, giving people bypass surgeries instance. And then I was given the same people bypass surgeries instance, a couple years later. And, you know, and then he stumbled upon some answers and EECP is one of them that helps his patients stay well. And, you know, he makes a lot less money.
because of it, because he doesn’t go in and do these interventional approaches. And, you know, EECP, the most you could pay somebody is like $100 an hour, and you’re going to tie up a patient room for 35 hours with a tech, it doesn’t make any sense. I go pop a stint and you make 10 grand in two hours and never see you again. You know, like it just, I get it from, you know, I want to own a portion of Ferrari and have a lake house and a winter house, but
You know, like, I don’t know how you live with yourself. You said go for it, man. I’m going to go for it. you know, and my son’s about to graduate. Okay. Yeah. Okay. Fair enough. I’m good with it. Yeah. Yeah.
Bill Gasiamis (44:38)
But come on, come on, Jack. Yeah, you go for it. I’m going to push back. I’m going to push back as well. You go for it. I’ll push back. There’s yeah. Which is cool. Right? That’s what I want. I want to have a conversation and
I don’t want to control the narrative, but the guy that goes in needs a stint today has a blockage. Like that’s life saving. That does work. What I am afraid of that happens sometimes when people go in and they’ve got a blockage and then they get ⁓ even even a stroke blockage. Right.
in carotid or a vertebral artery. What happens is sometimes people go in and they get told you need a stent. Fair enough. You’re about to have a heart attack. You’re about to have a major stroke. If we don’t put one in, you’ll have a, that’s necessary. The challenge is, that that person sometimes doesn’t learn the lesson of what got them into the situation where they need a stent.
Jack Clifford (45:22)
Good.
Exactly. sure.
Yeah, by all means. Like emergency medicine is great. And we’ll put that in the emergency medicine category of cardiology, right? Why aren’t they offering you, why aren’t they saying, Hey, you’re at risk for a whole lot of other things just by this happening. Why don’t you come 35 times to this EECP machine and you know, like, or why don’t we have centers
Bill Gasiamis (45:36)
Yeah.
Yes, and then later…
Jack Clifford (45:55)
all over. I found exactly one place in Australia so far that I’m not focusing on Australia right now. I do plan to take EECP Locator International, but right now the access points in the US are abysmal. 70, 80 % of the people in the United States could not get to a center. There’s no access point that’s at all realistic for them to get to. And yet these machines are not that expensive. They’re the price of a
Decent not that great car. ⁓
Bill Gasiamis (46:24)
we’re starting to
see them in, I don’t know, health spas or something like that, where people will go, they’ll get yoga, they’ll get this, they’ll get that, they’ll get infusions perhaps and all sorts of other things. And there’ll be a machine or there’ll be a suit that people can put on and they can go through one hour.
Jack Clifford (46:29)
Yeah, that’s good.
That’s great.
Yeah, although
I do want to say that the Normatech, like the compression boots that they have and some of those things, when they don’t use the pressures that EECP uses up to 6 PSI and they’re not sinking it in between heartbeats, it’s helpful, but we’re not talking about things that can do the same thing in the body. It’s on the right path and I’m not digging it as being worthless because it’s not, but it’s just not the right thing.
Bill Gasiamis (46:47)
Yes. Yeah.
Yeah.
Yeah, that’s kind of what we’re seeing. And to go back to your point is because the medical profession does medical profession stuff. this is not, it’s not that it’s not medically kind of aligned. It definitely is. But when you’re told that the way you solve a problem is through putting a stent in and then never talking to that patient again, to tell them how to avoid to get a stent in that’s
Jack Clifford (47:31)
Yeah, that’s your job.
Bill Gasiamis (47:34)
what they do, like they’ve been trained to do that forever. And that’s what they do. And that works and it saves the life. But what it doesn’t do, which I also have a challenge with this, it doesn’t teach the lesson. What it reinforces is that if I have something wrong with me and I go to a doctor, they’ll fix it. So next time it goes wrong, I’ll just go to the doctor and they’ll fix it again. And I didn’t have to change my life. Like this even bloody advertisements that do that. They
Jack Clifford (47:51)
just I’ll go and he’ll fix it.
Yeah. Yes. Yes.
Bill Gasiamis (48:03)
They hijack that part of the person’s brain and they say, you know, have you got reflux, heartburn, that kind of stuff? Don’t let reflux and heartburn get in the way of eating the foods that you love. Just take a tablet. You know, that’s the same kind of thing, right? And that’s why the medical profession doesn’t do that because they’re not trained to do anything other than sell their thing. And their thing is what they went to work, to school for.
Raising Awareness for EECP TherapyJack Clifford (48:17)
Yes.
Bill Gasiamis (48:30)
20 years to be able to administer. But every so often you come across an amazing doctor, surgeon, et cetera, who says, I can’t do anything more for you, but maybe somebody else can. Those guys are better than the doctor who says, we can’t do anything else for you and then send you off their way. That next sentence, but maybe somebody else can, I don’t know who they are. That is.
Jack Clifford (48:43)
Mm-hmm.
Bill Gasiamis (48:57)
I think a great thing to say this is where I think EACP kind of fits in that now that I’m here and things are not good.
Jack Clifford (49:05)
I totally agree. I totally agree. And
yeah. And you, so you, you mentioned like the wellness spas and whatnot. And here’s the thing in 2015. So, you know, somewhat recently the FDA approved EECP for a brand new indication, general circulation, right? In healthy people. Like it’s right on the FDA indication. And also in one case in increase in VO2 max, but rough, that’s roughly saying the same thing. ⁓ yeah.
Bill Gasiamis (49:32)
for healthy people, was that part
of it?
Jack Clifford (49:35)
Yeah, it said unhealthy patients and healthy people didn’t call patients. So, so, ⁓ but, but, know, the litmus test for that is, is your doctor say you’re healthy enough to undergo circulation enhancement? If the answer is yes, you know, it doesn’t matter if you got all that other stuff or not, you know, we’re just not treating you for it. We’re not saying ECPs is fix for this, your erectile dysfunction. It might help it. You know, what’s not saying it’s, it’s the fix for your stroke, but it might really help your stroke, recovery, but.
Bill Gasiamis (49:47)
which
Jack Clifford (50:03)
Anyhow, so like you can, you know, I don’t know about in Australia, but in the United States, you could get an EECP machine and create a viable business model off of helping people as soon as people actually know about it and what it does, right? I’m trying to solve the access issue in the United States by aggregating demand, right, as one of the solutions. So I have a website, eecplocator.com. And if people… ⁓
tell me that they like EECP to be available in their area, when I get like five to 10 patients in one area, we’re gonna find a way to get it to them. ⁓ The how is, you there’s a bunch of different possible ways we can get EECP to them, but at the end of the day, you know, like people need this treatment. They really, really do.
Bill Gasiamis (50:50)
Yeah. We’re
not talking about anything ⁓ out there. Like this is not an out there thing. This is definitely common. Now I, I don’t know how I haven’t come across it. I’ve all these years after all these years now I’ve just because of our conversation right now, I just did a Google search and I typed in EECP machine Australia. And the first thing that came up was an Australian government department of health, disability and aging.
Jack Clifford (50:57)
No, it’s that.
Bill Gasiamis (51:20)
document from the Therapeutic Goods Administration, which
talks about a mid-trade Australia EECP system model, external counter pulsation system stationary. So it seems like they have a…
Jack Clifford (51:36)
Like they’ve approved it, sounds like they have some approved devices. Yeah.
Bill Gasiamis (51:38)
Something like they’re at least looking at it. Let me see what that
says. The inclusion of the kind of device in the AI community is subject to compliance with conditions placed in post. Yeah, it sounds like it’s been through some regulated body in 2021.
Jack Clifford (51:52)
Yeah. Mm-hmm.
Yep. There you go.
Bill Gasiamis (51:57)
This device is intended to provide external counter pulsation therapy and is indicated for use in the treatment of stable angina.
Jack Clifford (52:06)
Mm-hmm.
Bill Gasiamis (52:08)
pectoris and congestive heart failure. There you go, my friend.
Jack Clifford (52:10)
Yeah, it works great for
people with art failure. It really does.
Bill Gasiamis (52:14)
Dude, father-in-law had heart failure. He passed away from heart failure just a few, about a year and a half ago. ⁓ Now, I don’t know, I’m not saying anything, but we’ve never heard of this before. Today’s my first time where I’m really going to deep dive about this thing with you. ⁓ So what are the challenges that you face? what are the, what is it? ⁓ The barriers that you face?
Jack Clifford (52:20)
Yeah.
Bill Gasiamis (52:44)
when you’re speaking to people about this or how people finding out about it, how do you help people like
Jack Clifford (52:50)
It’s just an awareness piece. It’s an EECP what? And then, you you get in with some physicians and then you got to duke it out a little bit. Not with all of them. There’s plenty of physicians, you know, I’ve talked to the physicians that have machines and are doing the right thing for society and still making plenty of money. ⁓ They’ll just tell you, you know, I’ve talked to some cardiologists and just they know that all their colleagues are, you know, kind of crooked in certain ways. But
Bill Gasiamis (53:03)
Mm-hmm.
Jack Clifford (53:17)
⁓ Or at least they just haven’t taken the time, you know, like it’s a matter of what catches your shiny attention, right? Like you’re gonna, I know that’s fair. I want to retract that. I do.
Bill Gasiamis (53:20)
Yeah, let’s not call them crooked. I want to feel
like they are just not aware or they are
Jack Clifford (53:32)
Yeah, no,
and think that’s accurate, but I think maybe a more accurate thing would be to say not curious. It’s the lack of curiosity that bothers me. ⁓ I don’t need to go into it any further than to say like, hey, ⁓ some people know about it. Plenty of people haven’t bothered to find out that probably should have. ⁓ But in either case, we are where we are. ⁓
We’ve got a giant access crisis, but China has 5,000 access points. We have 150. I don’t know how many you have in Australia, but it’s not enough. let’s fix this because this could change the health status of your entire country, of the world. Like if people were proactively getting 35 hours of VECP, it’s some kind of an interval when they’re in an at risk.
category, which we can quantify with various tests and measures, you could easily stop people from ever getting to your father’s situation. My dad who died of dementia situation, sorry, father in law, yeah. ⁓
Bill Gasiamis (54:36)
Yeah, other in-laws. Yeah.
I hear you. hear you. Maybe what we need to do is maybe we need to, ⁓ get some data out and say how bad this is. Like it’s, we’ll call it something as bad as smoking and then we’ll get an advertising company to create a marketing campaign about how something bad is good for you. And then we’ll just teach people to be addicted to doing something good for themselves that they don’t know is good for themselves. Maybe that’s the way in. I know, I know where you’re coming from. get it.
Jack Clifford (54:58)
Yeah, right. There you go. We’ll reverse psychology.
Exactly. Yeah, although I want
to comment on one little side piece of benefit of the machine, which is I didn’t discover this right away and in 35 hours, probably not enough to do it, but you can appreciate the value of breath work, I believe, right Bill? And on the machine, it’s going to dunk, to dunk, to dunk at the rate of your heartbeat. If you learn to…
Bill Gasiamis (55:22)
Yeah, yeah, that’s huge.
Exploring the Future of EECP TherapyJack Clifford (55:31)
You slow the machine down like 30 beats a minute. You know, it’s real dramatic. goes from the dunk, the dunk, the dunk, to the dunk, to dunk, to dunk. And it’s just really crazy biofeedback in addition, because the pressure in your hips, right? It’s doing this to you. It’s strengthening your core and you really get to learn how to do breath work on the machine. And what I’ve found is over these 700 hours now, I have reflexive breathing. When I’m stressed out, don’t hyperventilate. I do the opposite.
it’s reflexive. And that’s because of those hours on the machine and just using that time, that time you’re stuck there for an hour. You guys will do some stuff.
Bill Gasiamis (56:14)
Yeah. I imagine it makes you feel really well. Also afterwards, I imagine like you’re meditating or you’re focusing on your breathing. Plus it’s doing that. Like the whole experience one hour or giving yourself one hour of time to do that is an amazing experience anyway.
Jack Clifford (56:18)
It does.
Mm-hmm.
I agree, totally agree.
Bill Gasiamis (56:33)
Yeah. ⁓ so let’s just get back to the book a little bit. Like, how does it go through? What does it go through? it scientifically based? What’s the idea with it?
Jack Clifford (56:41)
Yeah, yeah,
my story and you know a little bit about my wife’s journey along with me because it’s really benefited her as well too, but ⁓ She doesn’t have as many hours as I do and then we talk about ⁓ The you know the differences between other countries like China and India and why and what you know They’re different for both countries and some other countries where it’s more advanced And then we talk about the different, know how it works and what it works for and then we talk about
⁓ how a patient could actually go about, you know, accessing this therapy in the United States. And then we talked about kind of the future of the world of the possible if the EECP access was a thing and you how much money it could save our government and know, healthcare dollars or at least healthcare dollars could be spent better. ⁓ And
That’s about it. But it really helps you understand if you’re in the why haven’t heard of this camp before, you’ll really understand why. It’s very, very particular about picking apart what happened and why it kind of… So it had it like it’s high watermark was probably around 2006. And then drug eluding stents came out and people kind of lost interest in the EZP in the US. And so it just went a different direction.
And then here China with medicine, know, incentives that are different than ours, you know, it expanded from there and we were trying.
Bill Gasiamis (58:10)
Yeah, I love it. ⁓ so I, while you were chatting and I did it, I did another search for a CPM machine image photo. And there’s a Australian organization that has, ⁓ a machine that you lie on that they wrap you up in and it takes you through that process as well. Okay. So I’m just, I can’t believe I’m just becoming aware of this. They call it. They, they, one of their, ⁓ offerings is mitochondrial cell training.
Jack Clifford (58:37)
Yeah, I don’t disagree. I mean, when you deliver it, when you get so much blood flow in these small little capillaries that are the size of a human hair, right? You know, there’s a profound change at the cellular.
Bill Gasiamis (58:40)
Yeah, yep.
What I like about it is ⁓ if there is a therapeutic goods administration kind of approval and these machines are appearing in, we’ll call them ⁓ medical centers or health wellness centers or wherever, ⁓ clearly there’s.
a lot of benefit, very little risk. And then therefore people are feeling comfortable promoting this. This particular organization, I won’t name them, they have medical in ⁓ in their title, which sort of suggests that they are kind of maybe general practitioners or doctors of some sort. There’s a link, I’m in Melbourne, there’s a link that says new to Melbourne and it’s got an organization that’s there as well that talks about it.
Jack Clifford (59:11)
Yes.
Nice.
Bill Gasiamis (59:37)
So there you go. It’s more well known than I could ever have thought. And then there’s a video battling AONOCA angina and dyspnea after the COVID vaccine is one of the videos. yeah, look, doctors names listed all over here. Interviews. Okay.
Jack Clifford (59:41)
Yeah. That’s a start anyway.
Bill Gasiamis (1:00:04)
This is brilliant. I didn’t come in here skeptical, but I had never heard of it. So I didn’t even know how to start this conversation, but I love the idea of being able to offer solutions to stroke survivors who would benefit from additional blood flow, blood vessels, reroute around the damaged areas in their brain. ⁓ It’s kind of what hyperbaric oxygen therapy ⁓ aims to do as well.
Jack Clifford (1:00:23)
So.
Yeah, yeah, they go
hand in hand. The two are probably really powerful together. just, EECP works, but I’ve owned a hyperbaric chamber. I’m actually really familiar with it. ⁓ And I think a lot of it, but it’s really, it’s uncomfortable. And, you know, EECP can be uncomfortable in its own way, but it’s not, it’s not, you know, if you’re claustrophobic or if you have, you know, ear pressure sensitivity, ⁓ you know, hyperbaric has its challenges. ⁓
Bill Gasiamis (1:00:36)
Yeah.
Jack Clifford (1:00:55)
But it’s not going to grow blood vessels. It’s not in the same way. It’s going to oxygenate what you have. The EECP is going to give you a lot more. ⁓ They would work really well together. ⁓ Anyhow, ⁓ the one thing I want your listeners to just keep in mind is, it works just like exercise. So it’s gradual. So you’re going to get into it what you put out of it in terms of hours on the machine. ⁓ There are ways to get machines.
Bill Gasiamis (1:01:02)
I
Jack Clifford (1:01:22)
So if anybody, feel free to reach out to me. If you go to eecpbook.com, I’ve got all my contact information. I’d be happy to have a discussion with anyone. I’ve got a contact to my Facebook group and I’m talking to people from all over the world there. ⁓ I don’t charge anything to consult with people. I just passionate about EECP and spreading the word. yeah, it ⁓ sounds like it’s already approved in Australia. So that’s great. That means they could ship you a device if you wanted to. ⁓
One of the things that’s been really neat, we’ve been working with lot of couples lately and they’ll treat each other on our machine. They’ll stay with us for a couple of weeks and do that or stay near home. In the US, I’m open and I’ve got a space, like a six unit Airbnb. People will come and just stay there and get the treatment done. They’ll get the 35 hours done in 18 days, so it’s a lot faster instead of seven weeks.
Bill Gasiamis (1:02:15)
Mm-hmm.
Jack Clifford (1:02:17)
But the couples thing is actually a really big deal. I will say this, like, I don’t have the picture. I just posted it on my Facebook group, but it shows the different parts of the body and the blood flow increase. And let me just say the pelvis stands out about four act. So I like to say, like couples should really be doing this together. It’s almost a little dangerous for them not to.
Bill Gasiamis (1:02:31)
Uh-huh. Uh-huh.
Yeah, I hear you.
hear you. It could actually probably help some men in, you know, ⁓ erectile dysfunction issues. Like I get that as well. Like it makes complete sense. we’ll diet, so we’ll not smoking, so we’ll not drinking, so we’ll exercising, so we’ll not eating carbs, ⁓ and increasing your testosterone through, you know, physical activity and all that kind of stuff. Like all those things go hand in hand, right? And
Jack Clifford (1:02:55)
Yes, all these can be done.
Bill Gasiamis (1:03:09)
If you can give it a boost as well with this thing, that’ll be, you know, that’s amazing. Again, non-invasive, ⁓ everything about it sounds like it’s good. I’m glad we had this conversation and I’m going to look into it a lot further. Thanks so much for reaching out. We will have all the links in the show notes so that anyone who wants to reach out and ⁓ catch up with Jack. ⁓ I love your story, man. Thank you so much.
Jack Clifford (1:03:33)
Yeah, thanks Bill. This has been fun. Really appreciate it.
Bill Gasiamis (1:03:36)
That was Jack Clifford, and I want to thank Jack for taking the time to walk us through the science and his personal experience with EECP therapy. So what stays with me from this conversation is the biology. The idea that the body already has dormant bypass channels and that under the right mechanical stimulus, it can be told to activate them and that it’s not science fiction, that it’s arteriogenesis.
and it changes how I think about what’s possible in stroke recovery. But I do wanna be clear one more time, EECP therapy is approved in Australia for stable angina and heart failure. I’m not sure what the status is in the United States, but I think it’s similar. It is not approved for stroke. This is emerging off-label research and everything we discussed today is for informational purposes only. So please speak.
to your treating doctor before pursuing any treatment. If you want to explore EACP further, find the provider at eecplocator.com and learn more about the therapy at eecpbook.com. The research we referenced today was a 2026 meta-analysis from the QJM across 15 studies and 506 participants. The link is in the show notes.
If today’s episode sparked something in you, I’d love for you to grab a copy of my book, The Unexpected Way That Stroke Became the Best Thing That It’s the resource I wished I had had in own recovery in the early days. And you can get it at And if you want to support this podcast and the work of getting evidence informed, honest conversations about stroke recovery out into the world.
join us at can sign up there and you can support the podcast for as little as $6 a month. Until next time, keep recovering. I’m Bill Gasiamas. This has been Recovery After Stroke.
The post EECP Therapy and Stroke Recovery: Can a Cardiac Treatment Help Grow New Blood Vessels? appeared first on Recovery After Stroke.
Near-Infrared Light Therapy After Stroke: Does the Science Hold Up?A viewer reached out recently with a question I have been getting more frequently: Does near infrared light therapy actually help the brain recover after stroke? It is a fair question — the claims circulating online range from cautiously promising to outright extraordinary. In this post, I am going to cut through the noise and look at what the peer-reviewed research actually shows.
What is Near-Infrared Light Therapy?
Near infrared (NIR) light therapy — also called photobiomodulation (PBM) or transcranial photobiomodulation (tPBM) when applied to the head — uses specific wavelengths of light (typically 630-1100 nm) to penetrate tissue and interact with cells at a biological level.
This is not a tanning lamp or a heat lamp. The mechanism is specific: NIR light at the right wavelengths is absorbed by cytochrome c oxidase, a key enzyme in mitochondrial energy production. When stimulated, cytochrome c oxidase increases ATP synthesis — essentially giving cells more energy to carry out repair and function.
For neurons recovering from ischaemic or haemorrhagic stroke, the theory is compelling: damaged brain cells that are energy-starved might benefit from an additional energy stimulus.
The Mechanism: What the Biology Says
The cytochrome c oxidase pathway is well-established in photobiology. What is less settled is whether light at therapeutic intensities can penetrate the skull deeply enough to reach relevant brain structures.
Skull and scalp tissue absorb and scatter light substantially. Transcranial delivery requires sufficient power density (irradiance) at the source and long enough exposure to accumulate meaningful fluence (energy dose) at depth. Studies using ex vivo human skull specimens suggest that only 1-3% of surface irradiance reaches cortical tissue at clinically relevant depths — and deeper subcortical structures receive even less.
This does not make tPBM ineffective — it means dosing is everything. And most consumer devices do not disclose their irradiance or fluence specifications, which makes comparing them to clinical trials nearly impossible.
What the Research ShowsAnimal Studies: Encouraging SignalsSeveral well-designed rodent studies have demonstrated that tPBM applied within hours to days of stroke onset reduces infarct volume, improves functional recovery, and modulates neuroinflammation. A 2019 study by Thunshelle et al. found tPBM reduced lesion size in ischaemic stroke models and improved neurobehavioural scores.
Animal models are useful for mechanistic insights. However, rodent skulls are thinner and brain structures are more superficial than in humans — so translational accuracy is limited.
Human Clinical Trials: More ComplicatedThe human evidence is where the story becomes nuanced.The NeuroThera Effectiveness and Safety Trial (NEST-1 and NEST-2) were the most prominent early RCTs. NEST-1 (2007) reported positive outcomes for acute ischaemic stroke patients treated within 24 hours. However, NEST-2 (2009), a larger double-blind RCT with 660 patients, failed to replicate those results on its primary outcome measure.
NEST-3 was halted early in 2013 after an interim analysis showed it was unlikely to meet its primary endpoint.
What went wrong? Researchers identified several issues: heterogeneous stroke populations, inconsistent dosing protocols, and the fundamental challenge of transcranial light delivery in adults with varying skull thickness and tissue composition.
More recent work has shifted focus. A 2023 review by Zomorrodi et al. examined pulsed tPBM and found preliminary evidence for cognitive and neurological benefits in traumatic brain injury and neurodegeneration — but noted the absence of large, well-powered RCTs in stroke specifically.
The Consumer Device ProblemHere is where I have to be direct with anyone considering purchasing a NIR device for home use.
Clinical studies use medical-grade devices with precisely calibrated irradiance, typically 10-700 mW/cm2 at the source, with controlled exposure times to achieve specific fluence targets (often 0.9-36 J/cm2). Consumer devices vary enormously — and most do not publish their specifications at all.
Buying a NIR cap or helmet marketed for brain wellness is not equivalent to receiving the protocol used in clinical research. This does not mean it is harmful. It means we do not know whether you are getting a therapeutic dose, a sub-therapeutic dose, or anything in between.
The StakesIf you are in recovery from a stroke or brain injury and you are exploring every option — which I completely understand — the risk here is not primarily financial. The risk is investing hope, time, and energy into something that may or may not be delivering what clinical trials suggest is therapeutic.
The opportunity, on the other hand, is real: the underlying biology is sound, and the research pipeline is active. This is an area worth watching closely.
Three Actionable Steps1. Talk to your neurologist or rehab physician before purchasing any device. Ask specifically whether tPBM has been considered in your care plan and what the current clinical guidance is. 2. If you want to explore the evidence yourself, search PubMed (pubmed.ncbi.nlm.nih.gov) for transcranial photobiomodulation stroke — filter for systematic reviews and RCTs published after 2018 for the most current picture. 3. Check ClinicalTrials.gov (clinicaltrials.gov) for active trials recruiting stroke survivors for tPBM studies. Participation in a trial gives you access to a properly calibrated protocol and contributes to the evidence base.
What Recovery Can Look LikeWhen the brain is given the right conditions — adequate sleep, nutrition, rehabilitation, reduced inflammation, and potentially adjunct therapies that the evidence supports — healing happens in ways that can surprise both patients and clinicians.
I have spoken with hundreds of stroke survivors on this channel who found approaches that contributed meaningfully to their recovery. Not a single one found a shortcut. But many found tools — used thoughtfully, in partnership with their medical team — that made a genuine difference.
That is what this channel is about: doing the work so you can make informed decisions.
References1. Lampl Y et al. Infrared laser therapy for ischemic stroke: a new treatment strategy. Stroke. 2007;38(6):1843-9. PMID: 17463313. pubmed.ncbi.nlm.nih.gov/17463313 2. Zivin JA et al. Effectiveness and Safety of Transcranial Laser Therapy for Acute Ischemic Stroke (NEST-2). Stroke. 2009;40(4):1359-64. PMID: 19233936. pubmed.ncbi.nlm.nih.gov/19233936 3. Thunshelle C, Hamblin MR. Transcranial Low-Level Laser (Light) Therapy for Brain Injury. Photomed Laser Surg. 2016;34(12):587-598. PMID: 27854434. pubmed.ncbi.nlm.nih.gov/27854434 4. Zomorrodi R et al. Pulsed Near Infrared Transcranial and Intranasal Photobiomodulation Significantly Modulates Neural Oscillations. Sci Rep. 2019;9(1):6309. PMID: 31004089. pubmed.ncbi.nlm.nih.gov/31004089
Bill Gasiamis is a stroke survivor and the host of the Recovery After Stroke podcast. He is not a medical professional. Nothing in this post constitutes medical advice. Always consult your treating physician before starting any new therapy.
The post Near-Infrared Light Therapy After Stroke: Does the Science Hold Up? appeared first on Recovery After Stroke.
AVM Burst in the Brain: A Recovery Story of Patience, Aphasia, and Finding Your Way Back
Jennifer Tomscha was 39, driving her three-and-a-half-year-old daughter home from preschool, when an AVM burst in her brain. She felt a wash of dizziness first. Then her vision started collapsing on the right side. She pulled onto a narrow verge on the highway between Greytown and Carterton in New Zealand, tried to reach her husband, got no answer, and dialled 111 instead. When the dispatcher asked what was wrong, she said something she still can’t fully explain: “I think I’m having a stroke.”
She didn’t know yet that she had two arteriovenous malformations in her left frontal lobe — one discrete, one diffuse. She didn’t know that within hours she’d be helicoptered to Wellington Hospital for an emergency craniotomy, or that the following Monday a neurosurgeon named Dr. Woon would spend thirty hours trying to remove both malformations from her brain. She just knew something was wrong, and that her daughter was in the back seat, and that she couldn’t keep driving.
That moment — pulling over, self-diagnosing, refusing the urge to simply lie down and rest — may be the reason she’s alive.
What happens when an AVM bursts in the brainAn arteriovenous malformation is a tangle of abnormal blood vessels that connects arteries directly to veins, bypassing the capillary network that normally regulates blood flow. Most people with an AVM never know they have one. But when an AVM bursts in the brain, blood floods into surrounding tissue at high pressure, and the consequences are almost always severe: haemorrhagic stroke, seizures, sudden neurological deficits, and in many cases, death.
Jennifer’s first surgery controlled the bleeding. The second, five days later, was supposed to remove both malformations. It didn’t go as planned. The surgical team discovered that blood flow to the first AVM was feeding the second one, causing the brain around it to swell. Dr. Woon had to make an impossible decision in the middle of the operation: let her die, or remove a portion of healthy brain tissue along with the malformation.
He chose to keep her alive. The surgery took thirty hours. When it was finally over, he called her husband and said, “Well, you’ll be lucky if she talks.”
The six weeks she can’t rememberJennifer has no memories of the first six weeks after her AVM burst. She was in a medically induced coma for the surgery, then in intensive care, then transferred to rehabilitation. Everything she knows about that period has been told to her by other people.
When her memory started returning, she found herself in a rehabilitation ward in Masterton, using adult nappies, unable to sit up in bed. The front of her skull had been removed and wouldn’t be replaced for months. She wore a protective helmet whenever she walked. And yet — she insists — she felt fine.
“I kept saying, ‘I’m okay, I’m fine. You guys should just take it easy around me.’ But of course, I wasn’t really fine.” — Jennifer Tomscha
The honest recognition of what had happened to her didn’t come for almost two years. It took that long for her brain to have enough capacity to think about her brain.
The myth of the one-year recovery windowMost stroke survivors are told, either directly or by implication, that the first year matters most. That after twelve months, improvements slow. That after two years, you’ve plateaued.
Jennifer’s experience — and the experience of nearly every long-term survivor interviewed on this podcast — contradicts that narrative. Four years after her AVM burst, she is still discovering what recovery means. Her academic writing, once her profession as the Director of the Writing Program at NYU Shanghai, doesn’t flow the way it used to. She can’t recall songs from memory anymore, or sing the ones she used to sing. Her aphasia shows up most at night, when she’s tired. She still takes an afternoon nap most days.
But she’s also finishing a PhD. She can read as well as she ever could. She’s speaking, articulately, in a podcast interview eighty minutes long. And the parts of recovery she thought had stopped improving are, quietly, still improving.
What Jennifer wants other survivors to knowHer advice, offered near the end of the conversation, is short and unsparing:
“You can rest, and that’s okay. You can be as slow as you want to be, and that’s also okay. But don’t give up. Just keep going — at whatever pace feels right.”
It’s a rejection of both the productivity culture that tells survivors to push harder and the clinical culture that tells them to accept their limits. Recovery, for Jennifer, isn’t a race against a deadline. It’s a long, patient process of finding out what comes back and learning to live fully with whatever doesn’t.
Bill’s book and communityIf Jennifer’s story resonates with you, Bill Gasiamis’s book — The Unexpected Way That A Stroke Became The Best Thing That Happened To — explores the same territory: the slow, unexpected, sometimes beautiful work of rebuilding a life after a brain event.
Get the book here
Readers who want to support the podcast and connect with the community of survivors it serves can do so at Patreon.
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This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
Jennifer Tomscha: An AVM Burst in Her Brain at 39, and the Four-Year Climb Back to HerselfShe self-diagnosed her own stroke while driving with her daughter. Four years on, she’s still discovering what recovery really means.
Highlights:
00:00 Introduction and Background
10:00 Reflections on the Experience
18:00 Long-term Effects and Adaptations
26:45 Identity and Self-Perception Post-Stroke
38:48 The Long Game of Recovery
51:07 The Journey of Recovery
01:03:42 The Evolution of the Podcast
Transcript:
Introduction and Background: AVM Burst in the BrainJennifer Tomscha (00:00)
Dr. Woon was my neurosurgeon. And he just said,
I’ll never do another surgery like that ever again.
it was really long. And I think he definitely
had made me worse. Like they had taken out.
too much of my normal brain. when he called my husband after the surgery was over,
Dr. Woon said like, well, you’ll be lucky if she talks.
he was just so discouraged from how the AVM surgery went.
when I finally talked to him on Zoom. was so you And I was like, yeah, yeah, yeah, of course I can. He was like, will you show me?
and I walked up and down the room and he was like laughing so hard at my being able to walk. He was like so enthusiastic about it.
Bill Gasiamis (00:44)
Welcome back everybody. I am Bill Gassiomas and my guest today is Jennifer Tomche. In March, 2022, Jennifer was 39 years old living in New Zealand, finishing the first year of a PhD program when something happened to her brain that changed everything.
What followed was a medical emergency unlike anything I’ve heard described on this podcast and a recovery story that quietly dismantles one of the most damaging myths
in stroke survivor community. That after a certain point, the window for improvement closes. Jennifer is four years out from what happened to her. She still takes an afternoon nap every day. She still notices the edges of what her brain can and can’t do. And she is also finishing a PhD, raising two children and speaking with a clarity and warmth that will stop you in your tracks.
This is a conversation about what it actually means to play the long game and why might be the most important thing any survivor can do.
Before we get into it, if this podcast has been part of your recovery journey, I’d love for you to check out my book, The Unexpected Way That a Stroke Became the Best Thing That Happened, at recoveryafterstroke.com/book.
And a genuine thank you to everyone supporting this work on Patreon. If you wanted to support the show, you can go to patreon.com/recoveryafterstroke.
really helps me keep the conversation going. Let’s get into it.
Bill Gasiamis (02:12)
Jennifer Tomscha welcome to the podcast.
Jennifer Tomscha (02:14)
Thank you. I’m glad to be here.
Bill Gasiamis (02:17)
It’s lovely to have a local with me. Usually all my guests are from the United States or Canada or the United Kingdom. You’re just a hop, skip and a jump away in New Zealand.
Jennifer Tomscha (02:20)
Yeah.
Mm hmm. Yep. Yep. I’m American originally, but we moved here in 2020. So ⁓ we I’m grew up in Iowa. And then and then I after but we were living in Shanghai for us for almost seven years, my husband and I were living in Shanghai and I was teaching at New York University, Shanghai and then when COVID happened in China.
Bill Gasiamis (02:35)
Where are we from in America?
Jennifer Tomscha (02:54)
they told us to leave the country because it was where it started. So, and we had two kids, so my husband didn’t want to go back to the United States. And so my sister lives in New Zealand. So we moved here and then we just stayed here. mm-hmm. So, yeah.
Bill Gasiamis (03:11)
So
in China, was it just a request? Was it a directive? What was the situation?
Jennifer Tomscha (03:18)
From New York University, they said if you weren’t a Chinese national citizen, they strongly urged us to leave because they just didn’t know how they were gonna manage it. everyone, mean, in China, they had had SARS in the early 2000s, so they had already had it. And so right away, everyone had their masks on. They were ready to…
go and I was like, I want to get out of here. So we went to New Zealand and they also had a lockdown, but it was just for a month and then everyone could wander around because the virus was not here. we just stayed and I got into this PhD program. So that’s why we’re still in New Zealand.
Bill Gasiamis (04:00)
Wow.
That kind of brings us to the first question I ask most people these days is what was life like before stroke? So there was a little bit of stuff going on. was, work in China. There was a bit of, ⁓ travel from the United States to China. was children, but daily life. What, what was that like before the stroke?
Jennifer Tomscha (04:21)
When I saw my stroke happened in March of 2022 and at that time I had been in my PhD program for about a year. And I was just finishing up my research proposal. And so I was doing that during the day and my kids were both at, I have an older son who was in second grade year two. And then I have a daughter who was in preschool. And so my days were I dropped them off at their schools and then I would work for a little while. And then I would.
go and get them. So, and then they would come home and we would do all the other stuff in parenting. And my husband at that time was working at the library. So he had, he was at the libraries from nine to five every day. So he was at work. And that’s what, that’s what we were doing. Yeah. When I had my stroke. I was busy trying to finish up this research proposal. And then, yeah.
Bill Gasiamis (05:14)
39 years old at the time as well.
Jennifer Tomscha (05:16)
Yes, was 39.
Bill Gasiamis (05:18)
any signs, any kind of inkling that something was not right.
Jennifer Tomscha (05:23)
I didn’t, weirdly, so I’m trying to think about, my whole life I’ve had this thing where if, especially at just certain points if I hit my, this is maybe nothing to do with anything, but if I hit my elbow or my wrist, then I would pass out. And sometimes I would have like a little seizure while I was passing out. So wasn’t just like a regular fainting, it was like a seizure. And I had some of those in high school and I actually went to the,
hospital for those at one point and I think they didn’t know what that was and they just did an EEG. I don’t even think we had an MRI where I lived. So I didn’t really know and then that sort of passed. But I was feeling when I have a daily journal that I was writing and when I go back and read that daily journal, the whole, for a couple months ahead of time, I was like, I just feel kind of weird.
I don’t feel great. I feel like a little bit sick and I don’t know what’s wrong with me. And at that time they were allowing COVID to enter New Zealand. They were putting it in. So I was like, I think I might have COVID, but I took a bunch of tests. They were all negative. And then my stroke happened on Tuesday, but the Friday before I was so sick. And then that weekend I was really sick too. And then I got, like, I kind of felt like I woke up, I felt really nauseous. And then I felt better on Monday and Tuesday.
And Tuesday was when my stroke happened. So I think that was all, it was all, think, my body reacting to, I was probably bleeding in my head at that time or something. mm-hmm.
Bill Gasiamis (06:57)
I got it. And we’re to have to go back and talk about how it was that when you got hit on your, on your wrist and your elbow, how hard was the hit?
Jennifer Tomscha (07:05)
I don’t know.
Not super hard, I just, I don’t know what, I actually don’t know, and maybe it’s nothing to do with it. You know, maybe it’s something else in my body that I am prone to fainting. But I don’t know, I don’t really know why that, and maybe it wasn’t anything like that. But I had one day when I was 16 and I passed out three times and that did seem kind of funny. And I went to the doctor and I passed out while I was at the doctor’s office.
So they were like, there’s nothing wrong with you. So they put me to the hospital. They did the EG. stayed the night. And then they were like, there’s nothing wrong with you. So that was it. But I think if nowadays they probably would have done an MRI, maybe, and they would have seen that I had my AVM and my whole life would have been different because I wouldn’t have done all the stuff that I’ve done now. Like my mom was like, if we had known you had had an AVM, you would have gone to school.
in Sioux City, you know, or we would have done something to keep you nearby because we would be worried about you. Instead, I was just like, doing whatever I wanted to, which is good.
Bill Gasiamis (08:14)
Laze, but
that’s kind of good. But also I get the preventative thing. One of the, my former guests had a daughter who had an AVM and I think she was five when she passed away from a bleed in the brain because of an AVM. That’s horrific. And one of the, it’s actually worth listening to that episode and it’s worth me interrupting this right now to jump on and find that episode so that I can share it with people.
And this particular lady has made it her life’s mission to raise money, get an MRI machine and do preventative scans for people in case they have an AVM or some other undiagnosed neurological condition. I think it’s Gina. Gina Keely. OK, it’s. And her ⁓ foundation is now called the Paige
Keeley Foundation, it’s the most heartbreaking story. It’s episode 141 and I’ll have the link in the show notes and I’ll have it in the YouTube description. So for anyone listening, jump back and have a look at that. And also maybe even consider supporting the foundation because the story is heartbreaking and the efforts that this lady is going to ensure that this doesn’t happen to other people is just amazing. So.
I wanted to, I raised that because I had a, in 2011, no, no, in 2010, about 18 months before my actual AVM bled, I had a really terrible negative episode, nauseous, room spinning, like all the signs of stroke, but completely missed the, completely missed
Jennifer Tomscha (09:47)
Mm.
Bill Gasiamis (09:55)
the AVM when I went and actually had an MRI. So yeah, I went to the hospital, gave them my, rundown of what was happening to me and they were so switched on and they got me in and they did all the tests, but they didn’t find anything because they didn’t know what they were looking for. And there was no obvious sign of bleeding. So they didn’t dig deeper. And I have a friend of mine who is a radiographer who actually did my MRIs
Jennifer Tomscha (09:58)
⁓ really?
Mm.
Reflections on the ExperienceBill Gasiamis (10:22)
when I was in hospital being treated after my AVM burst in 2012. And he said to me, the preventative stuff is very difficult because if you don’t specifically know what you’re testing for, you don’t know how to set up the machine and how many slices that it needs to take and at what resolution. So that when you deliver that to the radiologist and they’re looking at it, can they see an AVM and then pass that on?
Jennifer Tomscha (10:37)
Mmm
Bill Gasiamis (10:49)
that information onto the neurologist. They might even miss it, even though they’re doing MRI. But what Jena is doing, it sounds like they’re specifically going after aneurysms, AVMs, other malformations, and therefore they have kind of this better opportunity to find it. So if somebody is considering getting a preventative scan of their brain, you have to be very specific.
Jennifer Tomscha (10:53)
Bye.
Bill Gasiamis (11:14)
with the team of doctors, radiographers, neurologists, as to what you want them to look for and make sure that they adjust the scan so that it’s fit for purpose.
Jennifer Tomscha (11:25)
That’s interesting. That’s really interesting.
Bill Gasiamis (11:26)
Yeah.
So what was the day of the stroke like? Was it, you said you’re feeling better on that Tuesday.
Jennifer Tomscha (11:34)
Mm-hmm. I had a good day. I have like lots of notes from my research proposal and I went to pick up. I don’t know why I did it this way actually. I went, my daughter’s preschool is in our town, Greytown, and I went and picked up her first and then I went to get my son. His school is a Montessori school. It’s in one town north. And so I went and got her and we were driving in the car and when I turned onto the highway that connects Greytown and Carterton,
I just felt like a wash of dizziness and I started losing sight, I think, in my right eye. And it’s seven kilometers from Graytown to Carterton. And right before we got into Carterton, I pulled over onto the side of the highway. I tried, so by that time I think I had lost most of the sight in my one, my right eye. And so it wasn’t very long actually. And so I tried to call my husband, he didn’t answer. And then I just called
111 and I was like, I don’t know why I was like, I think I’m having a stroke, but I don’t know why I even thought that actually. Do know what I mean? I just, was like, something is wrong with me. And so my daughter was fussing in the back and, I don’t really remember anything after that. I don’t remember the paramedics coming. I don’t remember talking to anyone. but so when they, I think the police came first and then
Then the paramedics came and they said I was nauseous, but talking a little bit. But then they moved me into the ambulance and, I started, choking and, or something, and they had to intubate me in the ambulance. And then they took me in. I was helicoptered off to Wellington hospital. So.
Bill Gasiamis (13:12)
How did you feel about it? I know you did the right things. You nailed it. But how did you feel? What were you thinking? I was completely oblivious to the risk I was at or in.
Jennifer Tomscha (13:14)
Yeah.
Mm-hmm.
Mm-hmm. I don’t know. just, let’s see, I think…
I think when I was losing my vision, that was hard. I mean, I’m really lucky. There was a little ⁓ path on the side of the road right before you enter Carterton. So I pulled over there so I could still control the car. You know what I mean? I wasn’t so bad. And I could dial 111 on my phone. I could still think about those things. But it wasn’t very long after I dialed 111 and talked to those people that I’d
that my memory is gone. So I think, I mean, I have spent a lot of time trying to like go back and figure out like, what was it? What could I have done early? know, like I was really lucky I was in the car, because honestly, because if I was at home, I might’ve like laid down and taken a nap and not called anybody actually, or called Dan and half have not answered. So then I could just see myself.
Bill Gasiamis (14:14)
you
Jennifer Tomscha (14:22)
It was actually really lucky that I was in the car with my daughter because it made me, I mean, I couldn’t keep driving very well. And so it made me pull over and it made me, I’d have to do something because I wasn’t in town. So I had to like figure out how I was going to manage the situation. And so I was really lucky actually that I was in the car and that I was in a public space where I was easy to find and like I could, so I felt like really lucky that all that happened.
in that time period, but also that soul that my daughter was with me because it made me, I had this like parental responsibility that I had to, I couldn’t keep driving with her in the car. Like I just, I knew I had to do something and quickly. I feel like, I feel really lucky that that was the situation that I was in because I could see a different day where I didn’t go get the kids at that time. And I maybe would have tried to take a nap and it would have been totally different.
So you know what I mean.
Bill Gasiamis (15:19)
It’s such a
common thing for people to go, oh, I’m not feeling well. I think I’ll just go lay down and have a rest and see if I can just get over it, sleep through it or whatever. yeah. And then it just leads to even more and more trouble or problems. The fact that you said, I think I’m having a stroke, right? That is so cool and bizarre and amazing.
Jennifer Tomscha (15:29)
Mm-hmm. Mm-hmm.
The guy was like,
why? And I was like, well, I’m losing my sight. I was like, I mean, I don’t know how it was. I was like, why do you think you’re having a stroke? I was like, I don’t know. But there was something wrong. You know what I mean.
Bill Gasiamis (15:52)
Yeah,
that’s such a good question for me. Why do you think I’m going to strike? I don’t know, but I just came up with it. What? That was enough though. Like that was such a response from you to say, I think I’m having a stroke. It’s very, very rare that people get there, but the fact that you got there kind of gave, gave them also like an understanding of how to attend the site and what to do.
Jennifer Tomscha (16:01)
Mm.
Bill Gasiamis (16:18)
And that saves time as well. That saves a ton of time.
Jennifer Tomscha (16:21)
Right. Mm-hmm.
Mm-hmm.
Bill Gasiamis (16:23)
and gets them, even though you may have been wrong, right? Gets them looking in the direction because they’re already got that in their mind. And then, well, let’s look at that first and then let’s suss it out. She might be completely wrong. But I walked into the hospital after my, while I was having the third blade and said, I’m having a brain hemorrhage or something like that. And I was in the hospital upright, standing, looking normal and
Jennifer Tomscha (16:27)
Yeah. Yeah, yeah, yeah, that’s true. That’s ⁓
Mm-hmm.
Bill Gasiamis (16:51)
They were looking at me like, okay, what are you on? This guy, this guy must be on something because it doesn’t look like he’s having a stroke. And then I had to try and convince them, but I wasn’t giving them my contact details. So they weren’t able to bring up my record. And all they were saying was just give us your name, give us your name. We’ll put it in the system. We’ll have a look. And eventually they got it out of me and, ⁓ and I was right. But yeah, such a good thing.
Jennifer Tomscha (16:54)
Oh, yeah, yeah, yeah, uh-huh.
no.
Hmm.
you
Bill Gasiamis (17:21)
I love those little bits and pieces that go well together because you often hear I often hear the bits and pieces that didn’t go well and and it turned out differently and how old was your daughter at the time? Yeah, wow.
Jennifer Tomscha (17:30)
Mm-hmm. She was three and a half. And so she was still
in the backseat, know, backwards in her car seat. And then we stopped and she was like, why are we stopping or whatever in her three and a half year old voice? And I was like, I just had to make a couple of phone, you know, I don’t know what I said to her. And then I think when the police came, she was asleep. Like she fell asleep back in the car. then, and then.
It’s just, I, I’ll, so then for the next six weeks I don’t have any memories of anything. So all, all of the information has been given to me by other people. But, so, yeah.
Long-term Effects and AdaptationsBill Gasiamis (18:04)
So was quite a large blade after all of that.
Jennifer Tomscha (18:06)
Yeah, it was
large. They took me, so I flew in the helicopter from Masterton to Wellington and I think they, by then my sister had gotten to the hospital and they, yeah, I think they said, yeah, they did an emergency, is it craniac? Or what’s the?
Bill Gasiamis (18:25)
Craniotomy,
Jennifer Tomscha (18:26)
Yeah, they did an emergency cradionomy and they saw that I was bleeding. And then they saw that I had this large left frontal or frontal lobe AVM. So, and then they said that at that moment they couldn’t tackle that AVM. So they, controlled the bleeding and then they, and they left my skull out and then, yeah. And then, then they, they talked to the neurosurgeon and
He, that was a Tuesday and he said, why don’t you, I was in a coma, just keep her in a medical coma. And then Monday they would do the, the, the surgery to get rid of the AVM.
Bill Gasiamis (19:05)
And
then that surgery happened.
Jennifer Tomscha (19:07)
That happened
and it was, had my, actually had two AVMs. One was really discreet and they could see all the endings of it. And the other one was diffuse. I don’t really understand it, but, the neurosurgeon said there was like parts of regular brain in and around the AVM. I don’t really understand how that happens, but, ⁓ so they started in the morning and they did, they got rid of the one AVM. They were taking it out.
And then something about the blood vessels that had some of they had been putting blood into that AVM. They then started feeding into the other AVM. So then that AVM made my brain sort of swell where that AVM was. And so the neurosurgeons had to decide if, mean, basically it was like, let me die.
because they couldn’t do anything about it, or they would get rid of that AVM and they would just take out the brain that was, the normal brain that was in the regular AVM. So they took, they decided not to let me die, thank goodness, and they decided to do that. so, but it was really long surgery, it was 30 hours, I think they just didn’t, yeah, it was really long. And…
And I think Dr. Woon was my neurosurgeon. And he just said, when he went and sewed my head back together, he didn’t think I was listening, but I was in the other room and I could hear him after I had my skull put back in. And he was like, I’ll never do another surgery like that ever again. it was too, it was really long. And I think he definitely thought that he had made me worse. Like they had taken out.
too much of my normal brain. when he called my husband after the surgery was over, like they didn’t call him. Dan, my husband was waiting for the whole 30 hours and they only called him one time at like 11 o’clock that night. And they were like, we’re finishing up. But then they had all this other stuff happen. So they didn’t actually call him again until noon the next day. And Dr. Woon said like, well, you’ll be lucky if she talks. Because we had to take out.
he was just so discouraged from how the AVM surgery went. And so, yeah.
Bill Gasiamis (21:24)
Dr. Woon needs to give himself way more credit.
Jennifer Tomscha (21:27)
I know, I know, I also
think that. I also think that, I mean, it’s, I mean, neurosurgeons, they’re, it’s amazing that you could, I’ve just, it’d be so weird if your job was to cut people up and go into their brains and try and fix something in that organ, which is so mysterious, do you know? Like, yeah, so.
Bill Gasiamis (21:48)
Wow. 30 hours.
So he also is thinking in his career, he’s probably never going to come across another 30 hour surgery. Yeah. Well, only if it’s necessary to make somebody better, but yeah, we definitely want to avoid that if we can for every human on the planet and for Dr. Woon, but I just, I’m just completely in awe of these people. I bumped into my surgeon last year.
Jennifer Tomscha (21:57)
I hope not. mean, I hope, you know, yeah, I don’t think, yeah.
Right.
Mm-hmm.
Bill Gasiamis (22:15)
because I had another MRI, because I had another bout of headaches and all that kind of stuff. still, you know, it hasn’t ended. I still go through all these things. And I mean, I mean kind of, I get emotional when I’m around her and when I’m in the room with her. If she told me to jump off a cliff because there is something positive down there and I would do it. If she said, if she said punch a hole through that wall, I would do it. Like I would do whatever she said because
Jennifer Tomscha (22:20)
no.
Yes.
Yeah.
Bill Gasiamis (22:44)
I just cannot get over the, know, when, you know, when you make a decision, some people, my phone is weird. I’ve never done this before, but you have a piece of fabric and it’s got some lines on it. And you know, if you cut it wrong, that you can’t use that piece of fabric for that pair of trousers anymore. You’ve got to use it for something else. Like that’s a pretty mild problem to happen. Like you cut wrong, you go in the wrong place. You pop that aside and.
You’re useful. If you do that to a human, there’s no going back. And you’ve got to make that decision every single time you walk into the operating theater. And imagine his family. Like, I feel like we need to reach out to his family and say, is there anything we need to make up for? I know we had your husband for 30 hours, but like, how can we support your family now that he’s done that for my family?
Jennifer Tomscha (23:40)
Yeah, yeah, yeah.
Bill Gasiamis (23:40)
Do you know, like it’s so
interesting that these people have been able to get to that level of capability.
Jennifer Tomscha (23:49)
Yes.
Bill Gasiamis (23:50)
with humans and helping people stay alive and be here with their family, be a mom, be a wife, be a daughter, be a member of the community.
Jennifer Tomscha (23:51)
Mm-hmm.
Yep. Yep, exactly. It’s just, it’s amazing. It’s just so, and I’m so grateful to him and he had another neurosurgeon working with him and yeah, it did, I mean, yeah, it’s amazing. I always think though, I’m trying to think about like, did, why, if he cut out those parts of my brain, why weren’t they, why?
I mean, I have some things I can’t do that I could do before. Like I can’t, this is so weird. I can’t recall songs very well and I can’t sing songs from memory, like at all. Like that part of my brain is done, which is fine, but I used to sing a lot. but I think because if the AVM is there when you’re in your, if it’s there when you’re in your mom’s womb, like if you’re, when you’re developing.
It’s probable that my brain was like, there’s a little issue here in this brain. We’ll move some of the stuff away from, don’t you think that would be, yeah, because I just think like, I think where my AVMs were, my brain was like, we’re gonna move, we’re not gonna put stuff by those AVMs because yeah, because your brain is really adaptable. Like that’s one of the things that I’ve been reading since I had my stroke.
Bill Gasiamis (24:59)
Wow. Yeah, I’ve never thought about that. Why not?
That makes sense, Jennifer. Because it’s… Yeah.
Jennifer Tomscha (25:18)
My mom’s like, your brain is so adaptable and flexible and it can do different things. You just have to try doing things, you know, and failing.
Bill Gasiamis (25:26)
And the blood flow
is not right. So you imagine with blood flow not being right, then the brain’s not developing correctly in that spot anyway. And it’s just developing where there is blood flow.
Jennifer Tomscha (25:37)
Yes, exactly. Exactly. I just I feel like that makes sense to me. And that’s why if you’re the neurosurgeon, I mean, you really don’t know. Like Dr. Woon didn’t know what was there. But I just feel like maybe my brain when it was developing was like, well, this isn’t a good spot and this other spot isn’t a good spot. So we’ll just do everything in a different place. And the brain is really you can really do that. I think your brains are really plastic in the way that they can order themselves. And so I
So it’s still all Dr. Woon. I’m just so grateful to him and everything that he did. Because honestly, I feel like I come from the States. I don’t know that a neurosurgeon, I just don’t know how long a neurosurgeon would have, they might be like, I’m done, I can’t do this anymore. I just don’t really know. It just all depends on the doctor and who sees you and everything. So I just felt so lucky to have been here.
Bill Gasiamis (26:30)
Imagine
doing a 30 hour shift on any day for anything.
Jennifer Tomscha (26:34)
No. And the thing about neurosurgery is like you’re in, I mean you’re doing like, you’re in a microscope or whatever doing that little and you’re tying off a little blood vein and I don’t know, it’s nuts, it’s so nuts. mm-hmm.
Bill Gasiamis (26:39)
them.
Identity and Self-Perception Post-StrokeYeah.
And they talk about, you know, how dangerous it is to drive when you’re off a take when you haven’t slept, when all those things. And these guys are going for 30 hours and they’re doing the most intricate, life altering surgery and it all goes perfectly well. So how wrapped was he when he realized how well it went.
Jennifer Tomscha (27:09)
I didn’t talk to him until June, so that was at the end of March. And then I was in the ICU for a while. then they moved me to Masterton and I did rehab.
And then I went to this last clinic, this ABI, this brain clinic for people who had brain injuries. And that’s when I finally talked to him on Zoom. And he was like, so can you walk? And I was like, yeah, yeah, yeah, of course I can. He was like, will you show me?
and I walked up and down the room and he was like laughing so hard at my being able to walk. He was like so enthusiastic about it.
I was, you know, I mean, we can talk about this too. was, everyone was like, when I finally have my memory back, I was in Masterton and I was using a diaper. I couldn’t walk. I couldn’t step in bed, but I remember being, actually,
⁓ I remember being like, I’m fine. I’m fine. Everyone is just fussing over me. But of course, they were right too. Do you know what I mean? But I was like, I’m okay. Everyone needs to just like, let me just relax around me. And everyone was like, everything I did, they would be like, you know, I couldn’t feed myself. And then, you know, there’s all this stuff. And I was like, I’m really okay. You guys should just.
take, like, I’m fine. I kept saying that, like, I’m okay, I’m fine. You guys are all. But of course, I wasn’t really fine, but I felt like,
Bill Gasiamis (28:36)
It
sounds like you weren’t physically there yet, but you were emotionally and mentally fine. Like it sounds like you were on the, you kind of knew that things were going to turn out or.
Jennifer Tomscha (28:48)
I think so. I think, or maybe, I always think like maybe you can only manage so much. like at that time I had my front part of my skull was gone because it had been taken out when they did both my surgeries. And so I had to wear like a rugby helmet or whatever when I walked. But otherwise I would sit in my room and it looked terrible. It’s just so terrible.
but I just didn’t really recognize that. Like I didn’t, wasn’t, I couldn’t do all the things at once. So I think I was just thinking about like, and finally at the middle of May, my mom and sister, I still had my like long hair in the back and short in the front. So my sister was gonna cut the long hair in the back. And I saw myself in a mirror and I was like, that doesn’t look very good. You know, like I wasn’t, I don’t feel like I was totally aware. I wasn’t, my brain wasn’t.
totally back in it. It’s a long time to recover and I feel like my brain only gave me, I don’t know, I felt like I couldn’t think about my own brain, maybe for like a year or something, really think about it in a second order way.
Bill Gasiamis (29:59)
allow yourself to kind of observe your state, your brain condition.
Jennifer Tomscha (30:02)
Yes.
Yes, I think I was like, it was like that my it was like maybe in October of the next year, October of 2023, where I was like, Oh, I can think about my brain and what it is in a way that I couldn’t. Because I don’t know, you have to go through, you just have to relearn a lot of stuff. But I didn’t like
I’m lucky, like, it didn’t affect my reading, so I could read right away. I’m not a very good writer, like, I don’t have good handwriting anyway, and my handwriting still maybe isn’t as good as it was before I had my stroke, but, yeah. I feel like, felt like, the actual healing was a longer process than I thought it was going to be, especially right when I first woke up, because I was like, I’m fine, but I wasn’t really fine, actually. Do you know what I mean?
Bill Gasiamis (30:55)
100%, they can make doctors and neurosurgeons do a 30 hour surgery, find that part, fix it, ta-da-da-da-da, do all those things, but they can’t make a helmet for God’s sake look half decent after they’ve taken your skull out. Like as if it’s bad enough, have skull missing and then they put this terrible looking thing over your head.
Jennifer Tomscha (31:11)
No.
It’s true. It’s true. It’s true. Yeah. Yeah. So, yeah.
Bill Gasiamis (31:22)
And I know for women
like hair is a big deal and become.
Jennifer Tomscha (31:27)
It was really,
I have always liked my hair and it was, I had short hair for about a year and a half maybe, you know, and I started growing out more and that was a little bit hard. I felt like that’s really vain, but I was like, man, I just did not like that short hair. Cause it’s not very, I don’t know. I just, wanted my old hair back. So I was lucky that it came back though. You know, everything, it’s not cancer. It’s a different thing. So you have a different, you know.
Bill Gasiamis (31:51)
I never would have told you that your hair didn’t look good, but my favorite hair is brunette curly hair. Yeah. My wife is a brunette naturally and she has curls in her hair and she straightens it all the time. I haven’t seen her brunette curly hair for 30 years.
Jennifer Tomscha (31:57)
Thank you.
⁓ yeah.
no.
Bill Gasiamis (32:13)
I’m like, woman, that’s what I like. Like that’s my thing. you stop straightening your hair, but I can’t get it to stop. ⁓
Jennifer Tomscha (32:20)
Yeah, that’s fine. Everyone has
to do what they want with their hair and everything. you know, that’s something that one thing I think about my stroke is you just got to go live your life. Like you can’t and you’ve done that beautifully. You know what I mean? Like this podcast is amazing. it’s just like, you just got to go do what feels good for you at the time and what you want to do and just do it.
and stop saying no, or you know what I mean.
Bill Gasiamis (32:49)
I’m trying. am. know exactly what you mean. One of the biggest things is identity is a big, big thing. And I don’t talk about me so much. I’ll talk about what happened to me, my stroke journey, but I don’t really give people a look behind the curtain. You know, sort of really understand what’s going on. This is just all a facade. And one of the challenges that I have is this painting company that I started 20 years ago was the main source of income. And it stopped abruptly seven years in when I became.
Jennifer Tomscha (33:02)
Hmm.
Mm-hmm.
Great.
Bill Gasiamis (33:17)
and it sort of still kept bubbling along. And then I got back to it in 2019 because my clients were still calling me and I was well enough after seven years of going through stroke and all the stuff of surgery, learning to walk again and all that. I was good enough to sort of get back into it. And of course in 2019, I only had six months and then we were in lockdown.
And then in lockdown, we had two years of lockdown in Melbourne, and then I’m trying to keep that thing going again. And then there was this massive influx of work after lockdown because everyone’s going, I’ve been looking at these walls for two years. They look terrible. Let’s get them painted. They had spare money because they hadn’t spent anything for two years. And that was like, let’s do this and let’s do that. And there was this massive amount of work for about 18 months. And then that was done. It was gone.
And it’s been a steady decline since as soon as Trump opened his mouth and did something in Iran and said what he said, and he plummeted like we’ve got no work. And I’m okay to have no work because I’ve been there before and we’ve managed our affairs so that we’re okay. But I can’t employ people right now at all. That’s gone. And getting people back and starting that again is going to be extremely difficult because the curve
Jennifer Tomscha (34:27)
Yeah.
Mmm.
Hmm.
Bill Gasiamis (34:36)
is not it’s not going to be a sharp dip and then it’s going to be a big spike of work and demand and all that kind of stuff. this podcast has been my saving grace every time I’ve needed to occupy myself with a project and make it so that I’m not thinking about me. The podcast was there. I did. I did an interview. It got me over the line. But now the biggest void that’s going to occur is not that I’m going to
Jennifer Tomscha (34:47)
Mm-hmm.
Bill Gasiamis (35:05)
potentially not have work in this field and after shut it down, which is gonna be fine if I do that, I’m okay with that. I’ll kind of pass it on to my younger son who’s looking to do some work in a similar space. I’ll give him the phone number and he’ll be able to take those types of inquiries and then he’ll do it on his own, like very small, the way I started at the beginning. And is that I’m gonna have all the time in the world.
Jennifer Tomscha (35:23)
Mm.
Bill Gasiamis (35:29)
on my hands to do the thing that I’ve been avoiding doing because I had this business that relied on me and the thing was to do public speaking. Right. And to actually do it the way that I’ve wanted to do it for more than a decade, which was to talk about the topics that I want to talk about, which no one’s talking about post-traumatic growth, overcoming trauma, how that’s applicable in organizations.
Jennifer Tomscha (35:38)
yeah, yeah,
Mmm.
Bill Gasiamis (35:56)
how to
treat people better in an organization so they have less mental health issues, so they have less physical issues, so they’re sick less, so they enjoy their work, so they’re not hating their life. And now I’m going to have all the time in the world to do it. And I’m shitting myself.
That’s the biggest issue, right? So that’s a little bit of a look behind the curtain. I am loving this. This is an amazing thing. And I do remember when I first started it, I was concerned about what people would say about me. You’re going to sound dumb, Bill. You you’re not going to, you know, what authority do you have? All those kinds of things, they were coming up in my head. And then when I wrote the book, the same thing, I wrote my first book, The Unexpected Way That a Strike Became the Best Thing That Happened to Me. Everyone has said, don’t write that book. Don’t write that.
Jennifer Tomscha (36:27)
Mm.
Bill Gasiamis (36:39)
Don’t let that be your title. It’s bizarre, it’s weird, like it’s strange, it’s too long and all these things. So I did it. And of course, the first time I spoke about it on YouTube, one of the first comments was a negative comment on my YouTube channel. It’s like, ⁓ okay. My God, that’s a kick in the guts.
Jennifer Tomscha (36:44)
really?
⁓ yeah.
Bill Gasiamis (37:03)
So those little kicks in the guts that I’ve had along the way have been few and far between, but they’re the ones that seem to persist the most. And they stay in that part of your head, which says, you know, that public speaking gig, you’re probably going to do the first one and they’re going to say you were terrible. And then you’re to feel all sad at 52 about, you know, yourself and all these things.
Jennifer Tomscha (37:15)
Yeah.
you
Bill Gasiamis (37:29)
how you’re going to overcome that emotionally and mentally and all this kind of stuff. It’s like, Bill, relax. You’re gonna have time to build your new career at 52. You’re gonna have time to do it. So that’s like, all right. I find myself getting pushed into a corner and only then responding with, all right, all right, I better step up again. I better do this again.
Jennifer Tomscha (37:33)
Mm-hmm.
Yeah.
Mm-hmm.
Mm-hmm. Mm-hmm. Yeah.
Bill Gasiamis (37:58)
Very
strange, re-imagining yourself and recreating yourself after stroke is a huge thing because you’re also doing it with a stroke brain. Whereas before I had no excuses, I was doing it still. Like the pattern is the same. The stroke brain part of it is an obstacle that I wish I didn’t have, but somehow this stroke brain part has made me do things I’ve never done before.
Jennifer Tomscha (38:14)
You
The Long Game of RecoveryBill Gasiamis (38:27)
a podcast, a book.
You know, I was a tradie. I was like, I didn’t study. didn’t read. In my, by the time I got to the age of 37, honestly, Jennifer, I reckon I’d read maybe seven books. And they were about this criminal underworld figure in Melbourne who had this, who had this career and of being like really terrible and somehow.
He was the thing that I was interested in reading about. Like that’s the only thing that captured my imagination. Everything else, everything else I picked up from listening to podcasts or watching shows on TV and that kind of stuff. So I wanna just, I wanna make people understand that the battles that you’re fighting, I’m fighting, it’s real. Like you’re not doing it alone. Everyone’s fighting this. How do I reimagine myself?
Jennifer Tomscha (38:56)
Bye!
Bill Gasiamis (39:20)
after stroke, you know, I don’t tell people I’m an author. Still, this book has been out for three years. I’ve had amazing reviews. I’ve had a couple of, you know, negative reviews and that’s okay. I’m not, I’m not an intellectual. I haven’t, I’ve never studied how to write literature, any of that stuff. And it’s sold about seven or 800 copies just through the podcast.
Jennifer Tomscha (39:21)
Mm-hmm.
Mm-hmm.
Mm-hmm.
That’s pretty good.
That’s actually quite a bit, I feel like. It’s quite a bit, actually. Mm-hmm.
Bill Gasiamis (39:47)
I feel like to like I don’t promote it. I don’t tell anyone about it just in the podcast.
And it’s like, I still don’t say I’ve authored a book. Nobody knows.
Jennifer Tomscha (39:56)
You
should say it. mean, I do think the what are you going to do after you have a stroke? How are you going to do it? It’s all very strange and scary, I think. And like, yeah, I, I totally get your feeling about it. And it’s just really tricky to know what is the
You know, for me, I feel like I was in middle of my PhD, so I took 22 months or 20 months off of doing the PhD just to rest. And then I went back in and it was, it is still, it was really hard. I like, wasn’t very good at figuring out how to write in the academic way.
Which was my position. I was director of the writing program at NYU Shanghai. So I was like, that was my thing. And it was very hard to figure out how to return to do the critical work of my thesis. was just, it’s just, I don’t know, my brain just couldn’t figure out how to do it right. It was really interesting. was like, the sentences I was writing weren’t as good. They probably still aren’t as good.
You know, like when I look at what I was writing before I had my stroke, which is part of my thesis, and then the stuff I wrote after my stroke, I feel like I can tell a little bit of a difference in the fluency of my writing, for sure. So, yeah. And I just, so… Yeah, I don’t know. It’s tricky. It’s tricky to figure out. But I was really lucky, actually. I think the PhD was helpful because…
I could just go at it on my own time and I could just take however much time I needed. And I, I had a deadline. but it was good to just, it was actually like a really good place to start to work my brain again, to be like, okay, I have to, I’m going to write on this author and what she thinks about character. And I’m just going to, and I have these other texts that I’m interested in and I have to figure out how I’m going to.
Represent them in my own work. And so it was really good to do all that. It was a good stepping stone for me I think actually to get back into it and to see What I could and couldn’t do very well, like I feel like I’m a really good reader. I’m a really good Critic and I’m not so good at ⁓ writing down what I think anymore as well So I’m just I really have to work on and I don’t know how you get it back like
Bill Gasiamis (42:26)
articulating
Jennifer Tomscha (42:28)
Yeah, articulating what I mean and yeah, I feel like I can’t, I can’t say things as artfully or as proficiently as I used to. So I don’t know, this woman who is getting her PhD at Vic too, she’s like, she studies how people learn to read. And she was like, if you’re having problems with academic writing,
you should get a, and I still haven’t done this, you should get an academic book and you should listen to it because a lot of learning to read is listening to how sentences sound. She was like, so you should listen to an academic book and that will help you think about how those sentences work and how they’re maybe different from like, I write fiction. So fiction is one thing and then this is a different way of writing. So she said that was one thing that she thought I should do to help.
develop my proficiency in academic writing, which was really interesting. So.
Bill Gasiamis (43:25)
Yeah,
it’s a different approach. You know, it’s coming from the auditory, you know, system and therefore the auditory digital system. Therefore you go in and you you, you pick up nuances that you wouldn’t have known were there if you’ve never heard an academic speak or if you’ve never read an academic document in that way. So you might read it.
Jennifer Tomscha (43:28)
Mm-hmm.
Yeah.
Bill Gasiamis (43:51)
to get something out of it. Like, okay, what is this academic saying about this topic? But that’s not paying attention to the structure of how it’s written. That’s a different filter.
Jennifer Tomscha (43:55)
Mm-hmm.
No, exactly.
Mm-hmm. Mm-hmm. Exactly. So I thought that was an interesting way to think about, like, how I could get better at that thing. That was, like, a really important thing for me. That, for some reason, it did just get a little bit, I don’t know, stunted? Or I don’t know what happened, you know? Or I just haven’t been in academia as much. So you know what I mean? So, yeah.
Bill Gasiamis (44:17)
Yeah.
Yeah,
100%. The skill is not as refined or, or practiced as your other skills. So it’s not the thing that you’re the best at. and you’re getting better at it. The thing about it is also, may I add you’re only four years out from all the drama that you had with your brain. So there’s a lot of healing to happen that is going to improve. That’s going to get better and better. And in four or five years from now, you will have
Jennifer Tomscha (44:29)
Mm-hmm.
Bill Gasiamis (44:49)
turn the corner again, you’ll see that there’s more and more improvement. It’s really important for people to hear this, who are three, two, one, five, six years in, there’s still heaps of healing and recovery to come. So it’ll happen.
Jennifer Tomscha (45:07)
Yeah, that was something that my husband and I, in my first year after my stroke, he would be like, go to the gym. And he did. He, I went to the gym and I, had me lift weights and he wanted me to like exercise. And he was like, what are you doing to improve your mind and your body over this first year? And I was like, I’m, I’m again, I was like, I’m fine. I’m really fine. And, and, ⁓ he thought I wasn’t doing enough.
Like he wanted me to just go at it with this intensity. I don’t know. was an, cause I was like, I am going at it with my own sort of intensity, but he wanted me to be more aggressive than I wanted to or something. You know what I mean? He wanted me to be like, he wanted to see me really working at it and like sweating or doing, you know what I mean? And I was like, I don’t wanna, I don’t know.
Bill Gasiamis (45:59)
He wanted it to be more
masculine.
Jennifer Tomscha (46:01)
Yeah, I guess. And he’s not very masculine guy. I mean, he’s a masculine guy, but he’s like, he was just he just wanted to see me sweating it out or doing the really see my focus. And I just yeah. And that has been an issue because he’s like, yeah, he’s just like, are you going to work again? I was like, yes, I’ll work. I just don’t know what I’ll do. And I don’t know if I could do a full eight hour day right now. I still take a nap every day in the afternoon. So
But yeah, it’s just, don’t, yeah, so.
Bill Gasiamis (46:34)
It’s
easy for a caregiver to say that because they haven’t had a stroke. Thank God. Thank God. ⁓
Jennifer Tomscha (46:40)
No, I know. Thank goodness. Yeah, yeah, yeah. Actually,
I mean, I feel really bad for Dan and my mom and my sister. Like, it’s actually worse to be the caregiver in some ways because you just, you don’t go through it. So you, you don’t really know what it’s like.
Bill Gasiamis (46:55)
I and you, and if you’ve got an imagination, a wild imagination, you could turn it into something completely way worse than what it is. And if you’re ignorant, which most family members and caregivers are, let’s face it. And that’s okay. Then you do the other thing. You play it down and you assume she should be going harder than that or
Jennifer Tomscha (47:11)
Yeah.
Mm-hmm.
Bill Gasiamis (47:19)
If I was, if it was me, I’d be doing that. But your brain has actually been injured and in that space, perhaps where motivation is for some people. And there is no way that you can make that person more motivated by willing them on or telling them to go to the gym or whatever. That could actually be missing the motivation part. So there’s a whole bunch of things that caregivers and family members miss. And it’s for me, it’s when I’m surrounded, when, when the people that are around me are
Jennifer Tomscha (47:33)
Mm-hmm.
Bill Gasiamis (47:46)
⁓
people who don’t want to engage deeply in those types of troubles, life and all that kind of stuff. they’re great people. They’re just like, emotionally they don’t go deep, right? They love it that there’s ambiguity around like what’s wrong with me. Cause they look at me, I look right. And then they just go, everything’s fine. He looks amazing. I feel better now. And when I’m around him, I can just talk about dumb stuff.
Jennifer Tomscha (48:07)
Mmm, yeah, yeah.
Bill Gasiamis (48:14)
And we can talk about things that are not important and everything’s fine. And it’s kind of like head in the sand. It’s a, you know, one step, one emotional step removed from the actual goings on. And it kind of also helps me strangely enough, because then I don’t have to deal with their inability to handle actual life and the real things that are going on.
Jennifer Tomscha (48:39)
Mm. Yeah.
Bill Gasiamis (48:43)
that can just be living in La La Land and I don’t have to deal with that level of complexity. So it’s kind of, they’re both situations are helping me in a way. Whereas at the beginning I was taking that negatively. The thing I do, the thing I would like to do is challenge caregivers to listen to the podcast, especially of the spouse who I’ve interviewed.
Jennifer Tomscha (48:50)
Yeah.
Yeah, that’s true.
Bill Gasiamis (49:09)
You know, and then
a couple more after that to get an insight so that they’re not guessing or second guessing or think they know better, et cetera. No doubt about it. they, know, they know some things about us that they can see that we’re not doing a pattern in behavior that we’re avoiding. Perhaps they know that part and all that type of thing. But we’ll say, we’re also dealing with a messed up brain. So have a bit of a kind of a Q
Jennifer Tomscha (49:13)
Hmm.
Right, right.
Bill Gasiamis (49:36)
be curious about where that person’s coming from, not how you’re feeling about where they’re coming from. And that’s what family members and caregivers do. They make it about them. And I had to say a few times to people in my circles, like, it’s not about you.
Jennifer Tomscha (49:43)
Right.
Ha Tomscha Tomscha! Yeah, yeah, yeah, yeah, yeah.
Bill Gasiamis (49:56)
It’s actually really about me. cannot walk and I can’t use my left hand. It’s not about you. Like I know you woke up with a numb leg one day because you slept on it wrong, but it’s not the same.
Jennifer Tomscha (50:05)
Yeah, yeah, yeah.
Yeah, yeah, yeah. That’s funny. Yeah.
Bill Gasiamis (50:14)
My
wife was dragging my foot in the wheelchair. It had fallen off the, you know, the rest where your leg, your feet sit. It had fallen off and I hadn’t noticed. This is like day three or day four after brain surgery. And it was dragging underneath the footrest. And she noticed that the wheelchair wasn’t moving and she was shoving it until we realized.
Jennifer Tomscha (50:22)
higher.
Bill Gasiamis (50:40)
My foot was stuck underneath the rest and we had a laugh. that kind of like, that’s one of those, if those people were there and they saw that, they would realize like, it’s not about your numb leg when you slept on it weird one night. take your stuff and just, you know, park it for now. So it’s interesting. That’s kind of why I think I do this podcast. I think it’s for those
Jennifer Tomscha (50:44)
Yeah, yeah,
Mm-hmm.
Mm-hmm.
The Journey of RecoveryBill Gasiamis (51:08)
people if they, I’ve never told them that they should jump on, but if they, for example, get curious one day and they want to know what it’s like to be in Bill’s head, pick one of the 400 episodes. Just have a listen.
Jennifer Tomscha (51:09)
Mmm.
I have a question for you. you, this is something that, so you think you could just, you can keep improving from your stroke. There’s not like a deadline. There’s not like a couple of years or any.
Bill Gasiamis (51:36)
One of the things I learned from my wife and my brother, my brother is my biggest nemesis. You he’s older and he’s the most loving guy. He’s the most supportive guy, but he has a weird way of doing it. Just, you know, we’re different characters, right? So he just is a bit different in the way. one, one of the things my brother said was that I picked up, I reckon it was five, six years ago is he’s in it for the long game.
Jennifer Tomscha (52:03)
Hmm.
Bill Gasiamis (52:04)
When I was young, I had 20 jobs in 10 years. He said two jobs in 40 years or 30 in 30 years. So he just chips away, works away, works away, works away. This is an analogy, right? But also a true story. My wife started her, her, her master’s in psychology. She only started that a few years ago, but the whole.
Jennifer Tomscha (52:08)
Hmm.
Hmm.
Bill Gasiamis (52:28)
journey to get to the Masters of Psych started in I think late 2011 or early 2011, about a year before I ended up in hospital. She is just now finishing the last part of her Masters degree and she found a job literally a week ago in her field two days a week.
Jennifer Tomscha (52:35)
Mm.
Mmm.
⁓
Bill Gasiamis (52:56)
to work as a provisional psychologist so that she can get the 1500 hours of work in the field before she actually gets her actual full psychology license. And I’m like, dude, I get it. So what you’re telling me is that if you just start and never stop, you’re gonna see some kind of progress. And I apply that to…
Jennifer Tomscha (53:08)
Right.
That’s amazing.
Mmm. Mm-hmm.
Bill Gasiamis (53:27)
stroke recovery. I know that people are dealing with far more deficits that perhaps you and I show visibly and that their hand may not specifically work the way that it always that they wanted it to work or that the way that it worked before. But that doesn’t mean the brain’s not continuously continuously healing that part of the brain might be gone. But as far as healing the parts around the brain that are still there, that’s continuing.
Jennifer Tomscha (53:28)
Uh-huh.
Mm-hmm. Mm-hmm.
Bill Gasiamis (53:58)
And if, and, and one of the questions that I have for people is like, is what I’m doing supporting my recovery or is it hindering my recovery? Because I’ve met stroke survivors who have gone back to the smokes, who have gone back to alcohol. And if you’re doing things that are getting in the way of recovery, then you’re not allowing the brain to continuously do what it does best, which is overcome challenges, rewire.
Jennifer Tomscha (54:05)
Mmm.
Bill Gasiamis (54:25)
find new ways around, know, develop new neural pathways and adapt. And that’s kind of where I think it’s at adaption, right? And the great thing about understanding these days about neurodiversity and understanding what somebody with ADHD goes through is the one skill they’re really, really good at is adaption.
Jennifer Tomscha (54:31)
Mm-hmm.
Mm, that’s interesting. Yeah, yeah. Mm-hmm.
Bill Gasiamis (54:49)
because and people with dyslexia. my God, like some of the biggest, most wealthy billionaires on the planet had dyslexia. Richard Branson is a classic example of that. Yeah. And they adapt. They find a way to somehow overcome the normal world and be weird in the way that they see letters and what letters do and how they move on a page and all that kind of stuff because their brain adapts and they can just continuously improve their adaption strategy.
Jennifer Tomscha (54:57)
really? didn’t know that.
Mm-hmm.
Bill Gasiamis (55:17)
to get to a point where no one knows that they have this condition. So that’s what I’m really passionate about. That’s why the podcast exists. I’ve interviewed in my 400 episodes, I’ve certainly interviewed stroke survivors who I’ve had improvement 10, 11, 12, 13 years post stroke, got a finger movement back. Yeah, got sensation back, something rewired. So yeah.
Jennifer Tomscha (55:19)
Right.
Mm-hmm.
really?
That’s amazing. Yeah, because I feel like when when you read about stroke recovery, they’re like, the first year is really important. Next couple years are important. And then after that, it’s slow going and maybe nothing, you know, they’re like, you got to get going right away. And that’s interesting. Yeah. I mean, that’s I still feel like. Like,
my brain’s still coming back to me. I maybe can’t describe the way like I feel that a little bit. Like, yeah, I can definitely feel like I’m getting better at a little better at talking about the stroke and not wanting to push it away. Or, you know, like, I was at a party a couple months ago, and there was a 16 year old girl there and she was, she had had a she had been homeschooled for something and I was like, what happened and she had had a traumatic brain injury.
And I was like, okay, so should I talk about it? And I finally, I was like, I had a stroke and I had this brain injury and it allowed us to, and I had never really told that to somebody before. And so I was like, it’s good, it’s good to share. You know what I mean? So.
Bill Gasiamis (56:46)
Absolutely. I had an
interview last week.
with Maggie Widom. It’s 11 years since her stroke. I had the first time I interviewed Maggie was in 2019. And experiencing Maggie in 2019 was a completely different Maggie than the one I was chatting to this time. And I say that in that by 2019, she had only been three or four years into her stroke recovery journey. But she was dealing with so many deficits because she had a brainstem stroke.
Jennifer Tomscha (57:02)
Really.
Bill Gasiamis (57:16)
So it took off so much of her. impacted her, the way she feels on one side of her body, how she feels on the other side of her body, her eyes, her balance, a whole bunch of things. And she was doing it hard. Like recovery was really hard. And she had been an actress amongst other things. And she was 33. Again, she had an AVM.
Jennifer Tomscha (57:29)
Wow.
yeah,
Bill Gasiamis (57:46)
burst or some other malformation and the and the challenge back then for me, I was early on in the podcast journey as well. And in the stroke recovery as well was me kind of understanding what happens after like, long does it take? What happens that are and Maggie is the classic. I started a project. It was called the great now what?
Jennifer Tomscha (58:04)
Mmm.
Bill Gasiamis (58:14)
in 20, I think she started in 2017, 2018. This is only a short number of years after her very serious stroke where you would have forgiven her if she didn’t. You would have thought, yeah, makes sense. You were dealing with all these deficits. And the project was to tell the story of stroke from a stroke survivor’s perspective, because there wasn’t a real story where somebody was giving that.
Jennifer Tomscha (58:29)
Right.
Mm.
Bill Gasiamis (58:44)
that version of it and she wanted to make sure that it was an accurate retelling of what stroke is like for somebody to go through what she went through. That project hasn’t completed yet.
because of funding, because of her health, because of COVID, all those things got in the way and yet the perseverance, the persistence, the fact that she started it and it hasn’t finished yet. The last episode that we did was to bring awareness to the project so that if anyone wanted to go, who listened to the podcast, wanted to go and support the crowdfunding part of the, I think the editing or the audio or the last part of putting that
Jennifer Tomscha (58:59)
Hmm
Hmm.
Bill Gasiamis (59:27)
documentary together and that’s the thing. And Maggie talks differently than before, like more, better than before. Her sentences come out differently, her voice sounds differently, her eyes focus better. ⁓ Her head doesn’t move as much because it used to involuntary move. And she spoke about some of the other deficits that have resolved, that have.
Jennifer Tomscha (59:42)
Wow.
Bill Gasiamis (59:51)
kind of got less worse than what they were. And also she spoke about how she’s adapted and overcome and changed. That’s 11 years since stroke. Like it never ever stops. I’ve been doing this. I’ve been going through my journey since February, 2012. I’m still talking about it.
Jennifer Tomscha (1:00:06)
⁓ Okay.
Yeah, yeah, yeah.
Bill Gasiamis (1:00:10)
And it’s so bizarre. Like I’ve never done a project that’s lasted this long other than the painting company. And then I did that out of necessity, work, money, you know, all that kind of stuff. This is a completely different experience. So I want to encourage people to play the long game like my brother does.
Jennifer Tomscha (1:00:18)
Right, right.
Mm.
Bill Gasiamis (1:00:29)
and my wife and Maggie. And if you play that game, you’ll get through the dips, the troughs in this journey. You’ll get through them a lot more calmly and easier. And when you do that, you recover and you rest better and your brain heals better. And it’s just a different way to go about it.
Jennifer Tomscha (1:00:47)
Mm-hmm.
Mm-hmm. That’s great. I think that’s just so powerful and important for people to hear about. Because I know sometimes, especially at the beginning, I was just stressed out and frustrated. And I had a lot of aphasia, so I had a lot of words that I
I just did say weird words that weren’t even English words, but you know what mean? I didn’t, couldn’t think of the word for the moment and it would be so frustrating and it’s just good to.
to have the long game in mind, I think would have been really helpful for me in those times to be like, I’ll get through this, it’ll be okay. And even if it’s not okay, even if I have aphasia for forever, which I still do, especially at night when I’m tired, that’s okay too. You know what I mean? Like it’s okay. It just is what it is and you can manage it. And yeah, I think that’s a really helpful way to frame it for people.
And their caregivers both, yeah.
Bill Gasiamis (1:01:45)
Yeah.
What’s really cool. Someone asked me on YouTube. I think that they have accessibility issues to, therapists for aphasia, that kind of stuff. Accessibility being they may not have either the funding or there might be not, might be near somebody or whatever. It just a couple of days ago and they were like, what do I do? Like, how do I start this aphasia recovery journey? Jump on YouTube.
Jennifer Tomscha (1:01:55)
⁓
Mmm.
Bill Gasiamis (1:02:08)
type in aphasia for your condition, there’s somebody doing therapy, 100%.
Jennifer Tomscha (1:02:13)
Interesting.
Yeah, yeah, yeah, yeah. Uh-huh. And yeah, that’s interesting. Yeah, I hadn’t thought about that. You’re totally right. Yeah. Mm-hmm. Mm-hmm.
Bill Gasiamis (1:02:21)
So
there are resources that now most people can access that don’t cost any extra that you can jump on and that you can do rehabilitation at home even if it’s just 20 minutes a day or one hour a week or whatever it is. if you feel like it’s gonna be okay even if it’s not okay, then that’s gonna be okay like it will.
Jennifer Tomscha (1:02:35)
Mm-hmm.
Yeah, I think I I understood what you meant. Yeah.
Bill Gasiamis (1:02:47)
Yeah, convoluted,
but it makes sense in my mind. And and you know, my book, the first one from idea to publication, took four years.
Jennifer Tomscha (1:02:51)
huh.
that’s interesting. Mm-hmm. Mm-hmm. Mm-hmm.
Bill Gasiamis (1:03:02)
I had no idea what I was doing. I didn’t even
know how to start a book. I got somebody to help me. had to pay them to help me to write this book. They guided me to a certain point and then we got it published. And it says it at the beginning of the book. This is not a scientific book. It’s not an academic book. This is not being written by somebody who’s studied writing or knows how to write a book. I made sure that people understand it’s just a stroke survivor.
Jennifer Tomscha (1:03:18)
Right.
You
The Evolution of the PodcastBill Gasiamis (1:03:29)
who came across this weird story that other people were saying that they thought that stroke was the best thing that happened to them. And I thought we’ve got to tell this story. There’s a 10 people I’ve got to tell that story because why the hell are they saying that? And they had these 10 things in common. And if I could bring those 10 things to you and you did that, then maybe, not the experience of stroke because I totally don’t think that was the best thing that happened to me, but the lessons that come.
Jennifer Tomscha (1:03:54)
You
Bill Gasiamis (1:03:56)
and the growth that’s possible and the new opportunities that could open.
Jennifer Tomscha (1:04:01)
Mm-hmm. Mm-hmm.
Bill Gasiamis (1:04:02)
That’s been the best thing that happened to me. Cause the trading life, the painting life has proven to be the same the next 13 years as it was the first seven years. Somebody either wanted a house painted or a wall painted, or they didn’t want one painted. They either wanted me to pay that much money for it, to pay me that much money for it, or they didn’t want me to pay that, be paid that much money.
Jennifer Tomscha (1:04:13)
Right, right, right, right.
Mm-hmm.
Right.
Right.
Bill Gasiamis (1:04:28)
Nothing’s changed there. Everything has changed and all the opportunities came outside of that. And there’s this thing in business, the opportunity cost. If you’re focused on a particular task and you’ll think you’re kicking goals and you’re loving that, and you’re doing that for something that’s substandard to you, the return is substandard to you, then not only are you doing something that you don’t love, that you don’t enjoy,
Jennifer Tomscha (1:04:29)
Mm-hmm.
Mm-hmm.
Bill Gasiamis (1:04:55)
that you’re not making enough money for all that kind of stuff. But you’re also taking your resources away from the other thing that you could be doing that could be bringing you more money, more joy, more meaning, more purpose, more whatever. The opportunity is lost as well as I’m not getting satisfaction over here. And kind of that’s like another way to think about how you’re doing your current life and what recovery
Jennifer Tomscha (1:05:03)
Mm-hmm.
Bill Gasiamis (1:05:23)
or when you get to the fork in the road, like why you might take the other path.
Jennifer Tomscha (1:05:29)
Mm-hmm. Mm-hmm. Yeah, that makes sense. Yeah, definitely. Yeah, I have my ⁓ oral exam for my PhD is next Thursday. So I’m like, I was just thinking about like, hopefully I pass it and then I’ll have my PhD or I’ll have to probably do some revisions on my thesis, but then I’ll have my PhD. And then I don’t know what we’ll do. You know, it’s just like, don’t, I don’t know what I’ll do.
I don’t think I can, you know, it’s just so, and I’ve been just looking at all different kinds of jobs, trying to figure out like what type of work I can do and full-time or part-time and all that stuff. yeah, it’s, I like that idea about the opportunity cost and like,
what am I doing now that maybe I should do something different or, you know, yeah, like what is it preventing me from doing something? So that’s really good. ⁓
Bill Gasiamis (1:06:17)
Yeah. For me,
just, what ended up happening, why I kind of stumbled in this, I just took on the challenge when somebody said to me, um, the guy who wrote my forward is an amazing mate of mine. I met him in 20, in 2013, and he knew how unwell I was and he would just keep in touch and he just turned up at really bizarre times and would just keep in touch and
Jennifer Tomscha (1:06:39)
⁓
Bill Gasiamis (1:06:46)
He would just keep in touch and then it came to my rehab hospital after surgery. And I was just amazed by this guy. Just, we really didn’t have much of a connection. Anyhow, I call him Mike the marketing guy, cause he’s in marketing. And he said to me, so, know, with all this stuff that you’re telling me about how you’re going to go about your recovery and how you’re going to heal your brain and all that kind of stuff.
Jennifer Tomscha (1:06:53)
Mm.
Bill Gasiamis (1:07:11)
Because what do you want to do with that information? So I’d love to tell other people about it, you And he goes to me, how, do you want to share that? I said, I could go to my local community here where I live and I could talk to people, you know, at the, at the town hall and I can meet people locally. He said to me, have you ever heard about this thing called the internet?
And I said, I don’t know. Like, why do you mean he goes, you know, YouTube and there’s podcasts and people are sharing all the information that they know, but it’s going to a global audience. And that was it. He just put the seed in my head.
And then the podcast happened. That is all he did. And I’ve just taken those kind of little bits of beautiful advice and thought, I’m not going to do it. I didn’t think I was going to do it for 10 years. I just thought, I’m going to give it a go. Let’s see what’s cool about it and what hard things I have to overcome and learn about myself to do this.
Jennifer Tomscha (1:07:57)
Yeah, yeah, yeah, yeah.
What did you, did you have like, did you have five people lined up to interview or how did you, no, okay.
Bill Gasiamis (1:08:13)
The first 10, maybe more, certainly the first kind of 15 people were not stroke survivors. And I was just building stories of people had overcome difficulties in life. And they may have been, cancer, the death of a loved one, all kinds of different things, but it wasn’t really resonating with me. And it wasn’t resonating with people who I was telling about this podcast.
Jennifer Tomscha (1:08:20)
⁓ okay.
Right.
Bill Gasiamis (1:08:40)
It was so early that I didn’t really think I wasn’t doing well. And I was really unwell also. My head was still messed up and I was still recovering.
Jennifer Tomscha (1:08:50)
Yeah, I know.
How long after your, because you had three different stroke. How long after did you start the podcast?
Bill Gasiamis (1:08:55)
Yeah.
The podcast started in 2015 and by 2019 there wasn’t a lot of episodes, but in 2019.
Jennifer Tomscha (1:09:02)
Okay.
Okay.
Bill Gasiamis (1:09:07)
When was it that I decided to start doing an episode a week? I think around 2018, 2019, I started, I decided I’m going to do episode a week. But, but what changed was at around episode 20, I had the aha moment that my podcast is not about all those other people. It’s about stroke survivors. Yeah. And then when that happened, I started to get really good momentum and then people started to listen and actually continue at least.
Jennifer Tomscha (1:09:12)
Okay.
Mm. Mm, that’s interesting. Yeah. Mm-hmm.
Bill Gasiamis (1:09:35)
listen and reach out and tell me that they loved it and all that kind of stuff. Like that’s when it turned and then it
Jennifer Tomscha (1:09:41)
Because my husband and were just talking about this. He’s also figuring out what he wants to do for work. And he was like, he’s just trying all these different things. So he’s doing some Instagram reels. And he was like, I’m just going to do 10 of them or 15. And then we’ll see. He was like, but I’m going to let myself do a certain number.
And then after I have that number, then I can be like, is this good or what do need to change about it? And that’s what it seems like you did with this podcast. You’re like, I’m just going to try it. And then after I have like 15 or 20, then I can look at it see how can I reshape it or that’s really interesting actually. Yeah.
Bill Gasiamis (1:10:15)
Yeah, you kind of
got to do it wrong or not make it feel a bit weird or whatever, but just persevere through it. And then you kind of have the, actually I know what the angle should be now. You don’t get to learn what the angle is until you’ve done the other ones that you weren’t really pleased about or happy about.
Jennifer Tomscha (1:10:28)
Mm-hmm. Mm-hmm.
Yeah, that’s really interesting. Yeah, that’s I mean, that’s amazing. I just remember because Dan was the one who told me about your podcast, my husband, and he was like, there’s a guy he just interviewed stroke survivors. And I was like, that’s interesting. It was after I had my stroke, obviously. But and I was like, wow, that’s a it’s like a there are tons of people who have strokes. That’s not but but I had never heard of anybody doing that. And it was it’s I mean, it’s been amazing. I listened to your podcast.
Bill Gasiamis (1:10:40)
Thank
Yeah.
Jennifer Tomscha (1:11:02)
Not every week, but once a month, I’ll just see who’s on. I really love it. And it’s so wonderful that you’re doing this for people. ⁓
Bill Gasiamis (1:11:11)
Yeah. I,
I, I, it’s a selfish pursuit. It’s for me. Everyone else gets the benefit because I, I do it, but, um, yeah, it’s honestly, I don’t know why I’m still doing it. Like I, I don’t know why. Like it just, cannot not do it. Like it’s so weird. I don’t have an intellectual answer. I just have it. I wake up in the morning. There’s a booking. I sit at the chair, people come on. I press record. We talk. I upload it.
Jennifer Tomscha (1:11:15)
you
Hmm.
Mm-hmm.
Bill Gasiamis (1:11:38)
I don’t
understand it. I don’t get it. think cause it’s so automated now and people reach out to me, it’s a lot less effort. Initially I was doing Instagram outreach, just following hashtag stroke, stroke recovery, stroke awareness, that kind of thing. And then I was just reaching out to those people going any chance you want to come on the podcast. And my gosh, people wanted to come on the podcast and I just couldn’t believe that they did. But my suspicion was that there was more of us out there.
Jennifer Tomscha (1:11:48)
⁓
Bill Gasiamis (1:12:07)
that were willing to talk about it. And we didn’t have, when I started this whole journey in 2012, my gosh, there was nothing out there for stroke survivors, nothing. It’s not sexy. It’s not sexy like all these cancer awareness things and multiple sclerosis and MND.
Jennifer Tomscha (1:12:09)
I
Yeah. Mm-hmm. Mm-hmm.
you
I know, no. Because stroke is kind of, it’s not random, but it feels random or it’s like, what I think is interesting about like the hospital care that I had here in New Zealand was amazing. But it’s actually funny that we have a system in place where people will go help me because it was my brain fighting against itself. And the people were like,
we can help you. I’m just amazed that we have that system in place where I could call 111 and they would come and they would fly me to Wellington. I mean, that’s incredible. It’s just amazing. And I feel like, but I think the stroke itself is not, nah, it’s not sexy. No.
Bill Gasiamis (1:13:03)
No, not at all.
And ⁓ I’m not, I’m not the guy to make it sexy, but if somebody out there knows how to make it sexy, please come forward. Let’s do something because we need to bring way more awareness. Cause we can feel in Melbourne, we’re sports mad. This is the sports capital of the Southern hemisphere. Almost now I’m overdoing it. At least of Australia, we can fill a stadium with a hundred thousand people.
Jennifer Tomscha (1:13:19)
Mm.
Bill Gasiamis (1:13:33)
who all will donate money to you name the cause that the particular footballer is promoting. And as if there haven’t been footballers and people of that kind of level of influence who have had a stroke, like as if they haven’t been those people. But there is this lack of ability to kind of bring those people into that awareness space where they’re doing a great job.
Jennifer Tomscha (1:13:37)
Mm.
⁓ yeah, yeah,
Right, right.
Bill Gasiamis (1:14:00)
of raising awareness. There’s a lack of people who are able to do that, but we can somehow do it for all these other conditions, which I love. I’m, which is amazing. I just feel like something has to change. So anyway, that’s why I kind of do this in a way. It’s like to just fill that gap
Jennifer Tomscha (1:14:00)
Mm. Mm-hmm.
Yeah.
That’s one thing. I mean, you’re a great interviewer, but I always feel like I don’t ever leave when I listen to your podcast. I never feel discouraged, like ever. And that’s amazing because that it just because you could definitely have talks with people who had strokes where you’re complaining the whole time and you can’t get but you don’t you don’t you don’t elicit that from the people who are coming to your show, which is great.
Bill Gasiamis (1:14:42)
No, what’s the
I want to thank you for reaching out to be on the podcast. really appreciate that. hopefully our conversation has been helpful, but I’ll, I do ask most of the people who listen is like one piece of advice, one thing that you can impart on stroke survivors that might be earlier on in the journey than you or I, like, what would you say to somebody who’s just come across this podcast and you know, they’re
Jennifer Tomscha (1:14:45)
yeah.
Hmm.
Bill Gasiamis (1:15:06)
They’re doing it tough right now.
Jennifer Tomscha (1:15:07)
Yeah, I think I would say you can rest you can take a nap, you know, that’s really helpful. Like you can be as slow as you want it to be and that’s also okay, but don’t give up. just keep going I think is the main thing, but go as slower, as fast as you want to and it’s okay.
Like I felt like my recovery was a little bit slower than other people’s. Like it took me a little bit longer to do some of the,
be able to talk and think about my own brain just took me a little bit longer than they say it does. But that’s not, it doesn’t really matter because I got there anyway.
Yeah, thank you. was great. Thank you so much. was wonderful to talk to you.
Bill Gasiamis (1:15:43)
On that note, thank you so much for joining me on the podcast.
Bill Gasiamis (1:15:51)
That was Jennifer Tomche speaking with me from New Zealand four years after an AVM burst in her brain and changed the course of her life. I wanna thank Jennifer for her generosity, for her patience and for her honesty in this conversation. There are very few people who can articulate what it feels like to lose access to their own brain it. And Jennifer is one of them.
essential message that recovery takes as long as it takes, that rest is legitimate and that you don’t have to give up even if the progress is one that every stroke survivor and caregiver needs to hear. If you’d like to go deeper into some of the themes in today’s episode,
I want to point out to you two earlier conversations. The first is episode 262 with Gina Keely, whose work with the Paige Keely Foundation focuses on preventative brain scans to catch AVMs before they burst. Her story is devastating and important, and it directly connects to the questions
Jennifer and I raised today about what might have been.
The second is episode 399 with long-term recovery from a brain stem stroke reflects exactly what Jennifer spoke about, that recovery continues well beyond the first year, the people who say otherwise are simply
If Jennifer’s story moved you, please share this episode with someone who needs to hear it, a survivor in year two, year four, year 10, who’s been told they’re done improving.
They’re not done improving.
If you haven’t yet picked up my book, you can find the unexpected way that a stroke became the best thing that happened at recoveryafterstroke.com/book. And to everyone who supports this podcast, thank you.
This podcast exists because you believe it should. I’m Bill Gosialmus. This has been the Recovery After Stroke Podcast. Take care of yourselves. Look after the people you love And I’ll see you next week.
The post AVM Burst in the Brain: A Recovery Story of Patience, Aphasia, and Finding Your Way Back appeared first on Recovery After Stroke.
Brainstem Stroke Long-Term Effects: What 11 Years of Recovery Really Looks LikeMaggie Whittum — 2025When Maggie Whittum first appeared on the Recovery After Stroke podcast in 2019 — Episode 47 — she was a few years out from a devastating brainstem stroke, still in the thick of the hardest part of recovery. She had survived paralysis, a ventilator, brain surgery, and a complete dismantling of the life she had known. At just 33 years old, a cavernous angioma — a vascular malformation affecting approximately one in 500 people — had caused a massive hemorrhagic stroke in her brainstem on Christmas Day 2014.
Now, more than eleven years on, Maggie returns to share what brainstem stroke long-term effects actually look like. Not the version you find in a clinical brochure. The real one — chronic neuropathic pain, persistent visual disturbances, deep fatigue, and the slow, non-linear process of building a new identity when the old one is no longer available to you.
Her story is also one of unexpected creativity. Maggie is now a filmmaker, artist, and disability advocate. She is the creator of The Great Now What, a documentary film exploring stroke, disability, chronic pain, and what it means to rebuild a life after everything changes. The film is in post-production and set to premiere at film festivals in 2026.
What a Brainstem Stroke Actually Does to the BodyThe brainstem controls some of the most fundamental functions the body performs — breathing, swallowing, eye movement, facial sensation, and the coordination of signals between the brain and the rest of the nervous system. A stroke in this region, even a survivable one, can produce a uniquely complex set of deficits.
For Maggie, the immediate aftermath included complete left-side paralysis, inability to breathe or speak independently (requiring ventilation), and kaleidoscopic double vision with nystagmus — eyes bouncing constantly in the sockets. She underwent brain surgery and intensive rehabilitation.
Eleven years later, some of those deficits have partially resolved. Others have not. The brainstem stroke long-term effects Maggie continues to live with include:
- Hemiplegia on the left side — weak and uncoordinated movement, no sensation
- Hypertrophic olivary degeneration — constant, involuntary eye movement
- Gaze palsy to the right and nystagmus to the left
- Right-side facial palsy from cranial nerve damage
- Chronic neuropathic pain — burning, freezing, crushing, and severe pins and needles on the left side of the body
- Significant fatigue, which shapes how she works and creates
She walks with a cane. She manages these realities every day. And she has found ways to not just cope with them, but to make them the subject of her art.
When Words Are Not Enough: The Barbie Art Project“I needed to communicate to these people better — and also my own friends and family. So I took a Barbie doll and tried to make it look like I feel.”
— Maggie Whittum
One of the most striking things Maggie has done in her recovery is find a visual language for pain that spoken language alone cannot carry. Frustrated by the difficulty of explaining neuropathic sensation to doctors, therapists, and loved ones, she created a series of modified Barbie dolls — each one representing a different aspect of how her left side feels.
Concrete Barbie has the left side encased in grey clay — the crushing heaviness. Rubber band Barbie has bands wrapped down the left side — the tightness. Vice grip Barbie has clamps all the way down — the pressure. Others are painted with fire and black — the heat and darkness of nerve pain that language cannot quite reach.
It is an act of translation. And it is also a form of advocacy — making the invisible visible for people who have never experienced it. You can find the full series on the The Great Now What Instagram page.
The Five-Year Mark — and Why It MattersOne of the most important things Maggie shares in this conversation is a framework that will resonate with many stroke survivors: the idea that it takes approximately five years to truly understand what a brainstem stroke has done to you.
This is not a clinical timeframe — it is an experiential one. The first two years, Maggie describes, were consumed by grief and the visceral shock of comparison: the life she had, and the life she now had. By five years, something begins to shift. A clearer picture emerges. A person begins to understand not just the deficits, but the new shape of their life.
For Maggie, that process was interrupted by her father’s death and the onset of COVID. But she describes herself now, at eleven years, as having genuine comprehension of what happened — and of what she has chosen to do with it.
“You’re gonna do like 10,000 things. And now that this has happened to you, you’re just gonna do a different 10,000 things — but it’s still your life.”
— Maggie Whittum
This reframe — borrowed from advice given to another wheelchair user early in his recovery — cuts through the grief of what was lost and opens a door to what is still possible. Not as consolation. As truth.
The Great Now What: A Documentary Built in Stroke TimeMaggie is the creator and producer of The Great Now What, a feature documentary about her stroke, her recovery, and what it means to rebuild a life with disability and chronic pain. The film has been in development for several years — slowed by COVID, by fatigue, by the realities of disabled filmmaking — and is now in post-production.
The film does not shy away from the difficult middle of recovery. Maggie is deliberate about this. She describes the typical narrative arc of recovery stories as “saccharine” — the fall, the rise, the triumphant ending, with the messy, decade-long middle compressed or erased. The Great Now What refuses to do that.
A crowdfunding campaign launches on May 1st, 2026 — Stroke Awareness Month in the United States — to fund post-production costs including editing, colour grading, sound mixing, and accessibility features (captions and audio description for visually impaired viewers). To follow the film’s journey and be notified when it becomes available, visit thegreatnowwhat.com.
Identity After Brainstem Stroke: Becoming Someone NewBefore her stroke, Maggie was an actor, freelance director, and producer. She had performed at the Edinburgh Fringe, produced improv and theatre internationally, and was mid-way through a Master of Fine Arts in classical acting in Washington DC when the stroke occurred.
That version of her professional life is no longer accessible in the same way. But rather than treating this as only a loss, Maggie has constructed a new creative identity — one that includes visual art, filmmaking, disability advocacy, and public storytelling about stroke and chronic illness.
“I feel like I can call myself a filmmaker now,” she says. “I really couldn’t when I started this project.” That sentence is worth sitting with. Identity after brainstem stroke does not arrive fully formed. It is built, slowly, out of what you choose to do with the time and capacity you have.
If you are navigating that process — or supporting someone who is — Bill’s book, The Unexpected Way That a Stroke Became the Best Thing That Happened, offers a framework for understanding the deeper transformation that stroke can catalyze. And if you want to be part of a community that understands what long-term recovery actually looks like, consider supporting the Recovery After Stroke Patreon.
What This Episode Is Really About
Brainstem stroke long-term effects are not just physical. They are relational, psychological, vocational, and existential. Maggie Whittum’s story, eleven years of it, makes that clear without sentimentality and without false resolution.
She is not fixed. She is not the person she was before Christmas 2014. But she is someone, a filmmaker, an artist, a survivor who has chosen to make meaning out of what happened. And that, as this conversation makes clear, is its own kind of triumph.
Listen to the full episode on the Recovery After Stroke podcast, and find Maggie’s film project at thegreatnowwhat.com.
Medical Disclaimer
This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
The post Brainstem Stroke Long-Term Effects: What 11 Years of Recovery Really Looks Like appeared first on Recovery After Stroke.
Life After Right MCA Stroke: Why You May Not Feel Like Yourself After StrokeIntroductionHeidi Loveridge survived a right MCA stroke at 43.
Physically, her recovery has gone well. She regained strength, learned to walk again, and is even working toward getting her driver’s license for the first time.
But emotionally, something feels off.
“I used to be so happy… and now I’m not.”
If you’ve had a stroke and feel like you’re not yourself anymore — even when everything looks “fine” on the outside — you’re not alone. This is one of the most confusing and least talked about parts of life after stroke.
In this article, you’ll learn what life after a right MCA stroke can really feel like — physically, emotionally, and mentally — and why recovery is about more than just getting your body back.
What Is a Right MCA Stroke?A right middle cerebral artery (MCA) stroke affects the right side of the brain, which plays a key role in:
- Spatial awareness
- Attention and perception
- Emotional processing
- Awareness of the left side of the body
Because of this, many stroke survivors experience:
- Left-side weakness or coordination issues
- Changes in emotional regulation
- Difficulty with awareness or attention
- Fatigue and cognitive overload
Heidi left the hospital with left-side weakness and needed a walker and wheelchair initially. Over time, she regained much of her physical ability — but her emotional recovery has been more complex.
The Part Nobody Talks About: Emotional Recovery After StrokePhysical recovery is visible.
Emotional recovery is not.
Heidi describes crying frequently, sometimes without a clear reason. She also experienced depression — something her doctors explained can be common after a right MCA stroke.
But what makes it harder is this:
She doesn’t fully know why she feels the way she does.
That uncertainty can be one of the most distressing parts of recovery.
Many stroke survivors expect:
- “I survived, so I should feel grateful”
- “I’m improving physically, so I should feel better”
But instead, they feel:
- Flat
- Overwhelmed
- Disconnected
- Not like themselves
This is not a personal failure — it’s part of how the brain heals.
Why You May Not Feel Like Yourself After StrokeA stroke doesn’t just affect movement.
It affects identity.
Heidi describes a major personality shift. Before her stroke, she was an introvert who avoided conversations and social situations. Now, she talks to strangers easily and seeks connection.
At first, that might sound like a positive change — but it also comes with confusion.
Who am I now?
This question is common after stroke, especially when:
- Your emotional responses change
- Your energy levels fluctuate
- Your tolerance for stress is different
- Your interests and behaviours shift
The brain is literally rewiring itself — and that includes the parts responsible for personality, mood, and emotional regulation.
“I used to be so happy… and now I’m not.”
Physical Recovery Doesn’t Mean Full RecoveryFrom the outside, Heidi is doing well.
She can:
- Walk independently
- Ride an electric bike
- Cook again (after initially losing the desire)
- Participate in social activities
But internally, she still feels like something is missing.
This is where many stroke survivors feel misunderstood.
People see progress and assume everything is okay.
But recovery is not just about:
- Strength
- Mobility
- Independence
It’s also about:
- Emotional stability
- Sense of identity
- Feeling like yourself again
And those things often take longer.
What Helps During Life After Right MCA StrokeThere is no single solution — but there are patterns that help.
1. Movement and RoutineHeidi walks regularly to manage her mood. Movement helps regulate the brain and can improve emotional well-being over time.
2. Community and ConnectionAfter her stroke, Heidi actively sought connection:
- Joining a women’s circle
- Returning to church
- Talking to strangers
This is a major shift from her previous life — and a powerful part of her recovery.
3. Accepting That Recovery Is OngoingAt just 10 months post-stroke, Heidi is still early in her journey.
Recovery doesn’t follow a fixed timeline.
It continues.
4. Allowing ComplexityYou can feel:
- Grateful to be alive
- Frustrated with your progress
- Hopeful and discouraged — at the same time
All of these can exist together.
The Search for Happiness After StrokeOne of the most honest moments in Heidi’s story is this:
“I wish I knew how to make myself happy again.”
That’s something many stroke survivors quietly experience.
The goal isn’t to force happiness.
It’s to:
- Create space for it
- Support the brain as it heals
- Build small moments that gradually reconnect you to yourself
Sometimes that looks like:
- Trying new therapies
- Talking to someone who understands
- Rebuilding routines slowly
And sometimes it simply means giving yourself time.
A Different Kind of StrengthHeidi didn’t just survive a stroke.
She changed.
She now says something she didn’t believe before:
“I can do hard things.”
That belief led her to:
- Get her learner’s permit at 44
- Step into new social situations
- Push beyond the limits she once accepted
This is a different kind of recovery, one that isn’t measured in physical milestones, but in personal growth.
ConclusionLife after a right MCA stroke is not just about recovery.
It’s about rebuilding a life that feels meaningful again.
If you don’t feel like yourself right now, it doesn’t mean you’re failing.
It means your brain and your identity are still healing.
And that takes time.
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https://recoveryafterstroke.com/book
???? Support more stories like Heidi’s and join the community:
https://patreon.com/recoveryafterstroke
Disclaimer
This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
Heidi’s Stroke Story: Surviving Physically, Struggling EmotionallyShe survived a stroke but doesn’t feel like herself. Discover why emotional recovery after stroke can be the hardest part.
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Highlights:
00:00 Life Before Stroke: A Journey of Transformation
04:45 The Day of the Stroke: A Life-Changing Event
09:39 Hospitalization and Recovery: Facing New Realities
15:17 Driving and Independence Post-Stroke
19:04 Emotional Changes and Mental Health
23:52 Finding Meaningful Connections
28:13 Life After Right MCA Stroke
36:12 Overcoming Limitations and Embracing Change
39:30 Travelling Beyond Borders
40:23 Transforming Personal Identity
44:15 Innovations in Stroke Treatment
45:17 The Journey to Happiness
47:33 Exploring Alternative Therapies
51:14 Lessons Learned and Moving Forward
Transcript:
Life Before Stroke: A Journey of Transformation
Bill Gasiamis (00:00)
You’re not happy.
Do know what you’re not happy about?
Heidi Loveridge (00:03)
No, it doesn’t feel like it’s anything specific. Like, I know I can do everything I need to do or want to do. So actually at Christmas time, I did try cross-country skiing. It was really hard.
Bill Gasiamis (00:09)
Mm-hmm.
Was it fun?
Heidi Loveridge (00:14)
Not as fun as it should have been. It was more hard than fun.
Bill Gasiamis (00:18)
Hello everyone, welcome back to the podcast. If you’ve ever felt like you’ve survived your stroke, but something still isn’t right, like you don’t quite feel like yourself anymore, then this episode is going to resonate with you. Today I’m speaking with Heidi Lovridge who experienced a right MCA stroke at 43. Physically she’s made incredible progress, but emotionally things have been a lot more complicated. And what’s really powerful about this conversation is how honest she is about that. Before we dive in.
I just want to say big thank you to everyone who continues to support the podcast. If you have picked up a copy of my book at recoveryafterstroke.com/book. Thank you. That support helps keep these conversations going and to the Patreon supporters. Thank you for being a part of this program and helping me create content that reaches stroke survivors all around the world. All right, let’s get into this episode with Heidi.
Bill Gasiamis (01:11)
Heidi Leveridge, welcome to the podcast.
Heidi Loveridge (01:13)
Thank
you.
Bill Gasiamis (01:14)
you tell me a little bit about before stroke? What was life like? What were you up to? What kind of things did you enjoy doing?
Heidi Loveridge (01:23)
Yeah, so I like, I love being outside. And I used to before my stroke, I was a total introvert. And my biggest hobby is knitting. And so like, I used to always knit, I used to bring knitting to meetings and stuff because I could, or parties so I could avoid chatting. But now I love talking to strangers. So I used to be a total introvert before my stroke too. But now a stranger is just somebody I don’t, it’s not my friend yet. Who I haven’t met, a friend I haven’t, a stranger is a friend I haven’t met yet.
Bill Gasiamis (01:50)
Is that a, ⁓ a mindset shift? that a life’s short thing? Like, is it?
Heidi Loveridge (01:59)
I know. I just suddenly don’t care what people think about me anymore. I can do hard things now, I know. Yes, so hiding before, I…
Bill Gasiamis (02:05)
and before you cared deeply
about what other people who you didn’t know thought about you.
Heidi Loveridge (02:09)
Yeah,
yes. So my stroke happened on my 20th wedding anniversary. We were actually planning on going on a big camping trip to like, actually we had a little small cabin booked at Vancouver Island’s most like in the middle of nowhere pub. So I was going to do, I was planning on doing camping and we’re going to bring, we have a little tin boat and a motor so we were going to go around the inlet up where we so.
Vancouver Island is on the west coast of Canada. It’s actually quite mild here. So it’s kind of a temperate rainforest here. And I used to love spending time outside, camping, hiking, but not like hiking where I have to carry too much heavy stuff. That’s too much for me. I’m actually getting to the point that I can imagine that I might be able to do that something again soon.
Bill Gasiamis (02:48)
Okay.
Okay, were you working back then?
Heidi Loveridge (02:55)
Yes, I was working, so I do procurement. So I buy stuff for the local transit agency.
Bill Gasiamis (03:03)
Okay. And you, how many?
Heidi Loveridge (03:04)
And I have lots of dogs in my life.
Well, there’s currently three dogs in my house right now. So I have a friend that breeds Shelties, and so she lets me take care of her puppies.
Bill Gasiamis (03:15)
Okay, and I’m curious, can I hear one of them painting right now?
Heidi Loveridge (03:20)
there’s a fan, there’s a filter beside me. I’ll turn it off. An air filter. my husband is in the garage in the other room and he sounds like he’s like sanding something.
Bill Gasiamis (03:31)
It’s all happening. It is what I’m hearing. I’m going to be rude and I’m going to wonder whether or not, we ask him to stop doing that for a little bit?
Heidi Loveridge (03:32)
That must be what you’re hearing.
Yeah. Dave!
Bill Gasiamis (03:44)
Yeah, is too. It’s not going to make for a good video.
Heidi Loveridge (03:48)
hearing me. Here I’ll send them a text message.
Bill Gasiamis (03:51)
Okay. Okay.
apologize profusely for me.
Heidi Loveridge (03:54)
Yes,
I will.
Bill Gasiamis (03:57)
I hate to get in the way of a man and his garage or shed.
Heidi Loveridge (04:00)
All right.
in the garage.
Okay, I him my subject. He hasn’t read it yet, but we’ll see.
Bill Gasiamis (04:07)
What’s he making?
Heidi Loveridge (04:09)
I don’t know.
Bill Gasiamis (04:10)
Hahaha
Heidi Loveridge (04:12)
He tends to collect bits of and just makes things depending on what he’s feeling like.
Bill Gasiamis (04:18)
Yeah.
Heidi Loveridge (04:19)
Yes. So I think that yeah, yes, he’s read it now. He says sorry. Thanks Dave. ⁓
Bill Gasiamis (04:21)
I wonder if he might have got the message.
Yeah.
⁓ So you’re a dog mama.
Heidi Loveridge (04:31)
Yes. Yes.
Bill Gasiamis (04:33)
or
a caregiver, dog caregiver.
Heidi Loveridge (04:36)
Yes. Yes, I have the joy of participating in the lives of dogs.
The Day of the Stroke: A Life-Changing EventBill Gasiamis (04:41)
Yeah. Okay. So the work was a busy kind of work life. Was there a lot happening?
Heidi Loveridge (04:47)
Yeah,
yeah, I was pretty busy. Except being in total introvert, I used to love spending time at home. But now after my stroke, I do I suffered a little bit from anxiety before my stroke. But now I’m I think I’m pretty I’m pretty sure I can be called that I’m depressed now too. Which I’m working on with my doctor. But yeah.
Bill Gasiamis (05:05)
Do you have it? Okay.
You experienced a little bit of depression.
Heidi Loveridge (05:09)
Yeah. Yes, I’ve cried a lot since my stroke. And I’ve actually seen the love of so many strangers. It’s surprising how many people are willing to give you a hug when you’re crying in public.
Bill Gasiamis (05:10)
Do you have a sense?
Yeah, that’s cool. Do you have a sense of kind of what is behind the depression or does it just come on and you’re not really aware of why it comes on?
Heidi Loveridge (05:30)
So I think it’s related to my brain injury.
Bill Gasiamis (05:33)
Okay, and how are you working with it?
Heidi Loveridge (05:33)
And apparently it’s common
with the right MCA stroke.
Bill Gasiamis (05:37)
⁓ okay. And how do you kind of work with it or deal with it or manage it?
Heidi Loveridge (05:45)
Well, I walk a lot. Yes, going for walks is how I help myself.
Bill Gasiamis (05:52)
Okay. Is it just getting out fresh air? Is it just getting the body moving? it?
Heidi Loveridge (05:55)
Yeah, it’s
moving and fresh air, I’m sure.
Bill Gasiamis (06:00)
Okay. And then does knitting have a role to play in that? Because even though we’re chatting on a podcast, you’re still knitting. So I imagine knitting is kind of something that you always do everywhere all the time.
Heidi Loveridge (06:08)
now.
Yeah,
yeah, not so much now, but I used to be like, totally obsessed.
Bill Gasiamis (06:17)
And it was, was it just
a distraction tool? was obviously, okay. I see what you mean. It’s obviously, it’s obviously also a creative pursuit. You, you end up making something and that’s useful. can wear. There you go. Right. But was it really a tool? Did it start off as a tool to be in public, but without really connecting with people?
Heidi Loveridge (06:20)
All my yarn over there.
Yes, yes, yes I’ve actually made the sweater that I’m wearing right now.
⁓ a little bit, yeah. But it started because at one point I used to work so many jobs. I used to work a full-time job and then used to do bookkeeping on the side. And then I stopped bookkeeping and suddenly I had all this time so I needed to find a hobby.
Bill Gasiamis (06:55)
Okay, okay. So are you somebody that doesn’t like spare time? Can you not sit quietly somewhere in a room and contemplate life or read a book or?
Heidi Loveridge (07:04)
⁓ I used to. Now I can
read books now still.
Bill Gasiamis (07:10)
huh. Okay. So a very interesting person. You’ve gone from being an introvert in the house, ⁓ to having had a stroke and things have shifted. You like connecting with people. You don’t mind getting a hug from strangers and you’re out and about as much as you can.
Heidi Loveridge (07:17)
Yeah.
Yes, no.
Yes, exactly.
Bill Gasiamis (07:30)
Tell me about the day of the stroke. What was that like?
Heidi Loveridge (07:33)
Well, I was falling. My balance was off that day and Dave kept on, I kept on having to come in to save me, pick me up off the ground. There’s actually a big dent in the garbage can in my bathroom that was from my head doing it.
But apparently, which I don’t remember this personally, but according to my medical records, apparently I was having symptoms for four days. I was having my balances off for a while before I actually, and then Dave asked me if he thought I needed to go, if I thought I needed to go to the hospital, I did not.
Bill Gasiamis (07:58)
Uh-huh.
Heidi Loveridge (08:04)
But then he called the nurse’s health line and they said, I think she’s having a stroke. And then, so we called the ambulance and then the ambulance then knew that I was suspected for a stroke. So they took me to the proper hospital where the stroke unit is.
Bill Gasiamis (08:18)
Did you have any sense in those days leading up to it that something was off, things weren’t right?
Heidi Loveridge (08:25)
No, nothing big, no. Though apparently I thought I had a migraine headache in the days before.
Bill Gasiamis (08:33)
Was a migraine headache common?
Heidi Loveridge (08:35)
Yes, yeah, that’s because when I got my stack of files from the hospital through freedom of information and that apparently is one of my risk factors, migraines with aura.
Bill Gasiamis (08:47)
is a risk factor for stroke down the line.
Heidi Loveridge (08:49)
Yes,
yeah.
Bill Gasiamis (08:51)
Wow. Okay. And you used to, migraines with aura are pretty big deal.
Heidi Loveridge (08:52)
Yeah, that and oral contraceptives.
Yeah.
Bill Gasiamis (08:57)
migraines with aura are pretty intense experiences, they?
Heidi Loveridge (08:59)
Yeah.
Yeah. Yes, I do remember a time. Yeah, I remember a time when I was a kid, I was having a microdora and I like remember my arm was flinging out of nowhere by itself.
Bill Gasiamis (09:03)
What was it like to experience a migraine like that?
Heidi Loveridge (09:12)
So I don’t know, that was my first sign that I was gonna have a stroke one day.
Bill Gasiamis (09:12)
Mm-hmm.
Maybe not.
Heidi Loveridge (09:17)
Maybe not though, yeah. Yes.
Bill Gasiamis (09:19)
And
then contraceptive pill you mentioned, were you taking the contraceptive pill?
Heidi Loveridge (09:23)
Yeah. Yes,
I was. And no longer. Never again.
Bill Gasiamis (09:28)
Okay.
Yeah. So did they find the underlying cause of the stroke? Did they give you a diagnosis for that?
Hospitalization and Recovery: Facing New RealitiesHeidi Loveridge (09:34)
No.
No, I was just having hypercoagulability of my blood.
Like I actually had blood clots in my lungs too.
Bill Gasiamis (09:43)
Right. There wasn’t any, any physical collision altercation with a piece of furniture or anything like that.
Heidi Loveridge (09:49)
⁓ nothing.
Yeah, there’s no, no good, there’s no reason, just a fluke it seems like.
Bill Gasiamis (09:56)
Yeah. But that contraceptive pill comes up so many times with people who’ve had a stroke.
Heidi Loveridge (10:01)
Yeah.
Yeah, but they can’t test for that.
Bill Gasiamis (10:07)
No, no, and they wouldn’t want to be.
Heidi Loveridge (10:08)
They tested me for
everything. All the cancers. I definitely know that I’m cancer-free for a while.
Bill Gasiamis (10:14)
Yeah, that’s good. That is very good. ⁓ And there was no hole in the heart or anything like that. No high blood pressure. Yeah.
Heidi Loveridge (10:15)
Yeah. No, no PFO. Yeah. Yeah, they tested for that. I
did the bubble study. Nope, none of that.
Bill Gasiamis (10:24)
Yeah. Did you do a blood test that kind of determined whether or not you have one of the blood clotting disorders?
Heidi Loveridge (10:32)
Yeah, they did that too. Nope, I don’t have one those. Or else I suspect I would have clotted a lot sooner.
Bill Gasiamis (10:35)
Yeah, wow. Okay.
Yeah, okay, understood. So it was one of those unknown things and we’re never gonna know whether it was a contraceptive pill or not. How old were you at the time?
Heidi Loveridge (10:47)
No,
I was 43.
Bill Gasiamis (10:51)
Okay. Yeah. How long had you been on the pill for?
Heidi Loveridge (10:56)
Like since I was a teenager. I was actually born with two uteruses, so I had issues as a kid with like my periods and stuff. Yes. Yeah.
Bill Gasiamis (11:05)
Uh-huh, so they help manage that whole situation.
Heidi Loveridge (11:08)
I was born two uteruses, one kidney.
Bill Gasiamis (11:12)
We’ll continue with Heidi in just a moment. Turn2.ai is an AI health sidekick that searches over 500,000 sources related to stroke. New research, expert discussions, patient stories and resources and keeps you updated on what is most relevant to you each week. Try it for free and get 10 % off by scanning the QR code on the screen or by clicking the link in the description.
Now let’s get back to Heidi.
Bill Gasiamis (11:38)
something got mixed up in the booking.
Heidi Loveridge (11:40)
Yeah,
yeah exactly.
Bill Gasiamis (11:43)
So that’s a very rare thing. imagine probably not many people are born with well, firstly, one kidney and then two uteruses at the same time.
Heidi Loveridge (11:51)
Yes.
Yeah, exactly. I get to be special.
Bill Gasiamis (11:57)
Do
they love you at the hospital? Were you one of those people that everyone got around, they wanted to see, they wanted to be a part of the consultations?
Heidi Loveridge (12:06)
No, I didn’t feel popular at the hospital.
Bill Gasiamis (12:10)
Do you know what I mean? Because sometimes you see doctors, they, um, they get excited when there’s a rare case or something they’ve never seen before. The person’s having the worst day of their life or they’re really unwell, but they’re really excited to see them. You know, they want to see them. They want to bring everyone in, come and have a look.
Heidi Loveridge (12:16)
Yeah.
Yeah. Yes. Yeah. Yes.
Yes, that’s what it felt like the day they found out I found out that I had two uteruses. There was one person doing the ultrasound on me and then they called in another person and I was like, something’s up.
Bill Gasiamis (12:30)
huh.
Right. Do you see what I see or is it just my double vision?
Heidi Loveridge (12:42)
I know what you see. Yeah, that’s exactly what they were doing saying.
Bill Gasiamis (12:43)
Yeah, that’s what…
That’s what I was doing. ⁓
Wow. So.
Did you manage to get to the cabin or to the particular place, the destination that you guys were heading to on that day?
Heidi Loveridge (12:54)
No. No,
we did not. I was in the hospital for like six weeks.
Bill Gasiamis (13:01)
huh. When you woke up from the initial hospitalization, what did you, how was it? What was that like? How did you kind of experience that moment in your life?
Heidi Loveridge (13:06)
Mm.
Like I feel like I remember the first day of the hospital. So like I don’t, I didn’t have any time that I passed out or became unconscious, I don’t think.
Which is surprising, because I used to pass out all the time. I’d knock my toenail or something and I’d pass out. I used to pass out at the dentist. But now I’m good. I don’t know, I used to panic.
Bill Gasiamis (13:25)
Why?
huh. It was an autonomic nervous system kind of response. You would just shut down.
Heidi Loveridge (13:30)
Yeah, exactly.
Yeah, exactly. But now I can do hard things. I actually went to the dentist for the first time in 20 years last week. No cavities in 20 years of not going to dentist.
Bill Gasiamis (13:40)
And it was easy.
Okay, or I share your no cavities technique. Is it just brushing every day? It’s gotta be more than that.
Heidi Loveridge (13:48)
Yeah, I guess.
I don’t know. I just- I just must- I don’t floss, really, but I’ve just been really lucky with my teeth.
Bill Gasiamis (13:56)
We’re going doing a deep dive into all of your habits ⁓ and no cavities for 20 years. That’s an awesome experience, especially if you haven’t been to the dentist.
Heidi Loveridge (13:59)
Yeah.
Yeah.
Yeah,
no cavities in my childhood either. I have one filling which was like a preventative measure, like, there’s a bit of a divot in your tooth, we should put something in there so you can’t get a cavity.
Bill Gasiamis (14:17)
⁓ did, mom and dad must’ve loved you. Like you’re, you’re the kind of kid that, you know, didn’t cost your parents anything.
Heidi Loveridge (14:27)
No, though they did get me braces though when I was a kid.
Bill Gasiamis (14:30)
They did, they stranded up your teeth and they thought, now we’ve spent some money on your teeth, look after them and never get a cavity. And you did.
Heidi Loveridge (14:31)
Yep.
fast. Yeah, yes. So I’m
actually quite, I quite, like I told them right away, like I didn’t get a cavity in 20 years. Though I was ashamed to say that I didn’t go to the dentist though, because like, they’re very up on dental care. It’s very important for them.
Bill Gasiamis (14:42)
Ha ha ha!
Yeah, it is very important for many things, dental care, believe it or not. Apparently, some dental gum diseases are a risk factor for heart conditions. yeah, gingivitis, I think it is a risk. Now, I didn’t go to the dentist regularly either. I kind of tried to avoid the dentist by floss and a brush, but I tried to avoid the dentist. They’re just uncomfortable, right? Having your mouth open and people probing in there. I get it. And some people have a lot of issues around that. So
Heidi Loveridge (14:59)
Yes, and stroke, yeah.
Yeah.
Yeah. Yeah.
Yeah.
Driving and Independence Post-StrokeBill Gasiamis (15:19)
It’s perfectly okay. But ⁓ it’s important to have good dental health care because it helps you avoid other medical conditions, which is so weird.
Heidi Loveridge (15:19)
Yes.
Yeah. Yes. Yeah.
Is dental care covered in Australia?
Bill Gasiamis (15:33)
No, not particularly.
Heidi Loveridge (15:35)
No,
here neither. But I’ve had benefits for so many years, and I just didn’t use them.
Bill Gasiamis (15:39)
Mm-hmm. You didn’t need to. Yeah. Yeah, that’s good. So on the day of the stroke, you remember basically the whole thing. You ended up in hospital and everyone. Uh-huh. What were you thinking? Were you thinking what’s happening here? Am I going to die? Did you have any of those types of experiences?
Heidi Loveridge (15:40)
like employer pay benefits.
Mm-hmm.
Yeah, I can remember the ambulance ride.
Yeah.
No, yeah, looking through my file, they say lots of stuff like, I’m patient is calm. I was just, I just let myself get taken care of.
Bill Gasiamis (16:09)
You just kind of left yourself in the hands of the experts.
Heidi Loveridge (16:15)
Yeah, exactly. Please fix me.
Bill Gasiamis (16:17)
Is that because you’re normally mild-mannered or you just realized that you were in a situation where you couldn’t do anything about?
Heidi Loveridge (16:22)
No, I’m always, I’m very mild-mannered. Yeah, I don’t argue with anybody.
Bill Gasiamis (16:28)
Even if they’re wrong.
Heidi Loveridge (16:29)
And maybe I guess it might depend on what they’re wrong about, but I generally let people have their own opinions. People are allowed to think what they want. That’s not my problem.
Bill Gasiamis (16:32)
Yeah.
I love it. love it. ⁓ yeah, that makes for a more, ⁓ at ease interaction with people.
Heidi Loveridge (16:38)
I can’t change everybody’s mind.
Mm-hmm.
Yeah, exactly.
Bill Gasiamis (16:48)
Yeah. Decreases probably conflict and all that kind of stuff. Are you conflict diverse? Is that why you do it?
Heidi Loveridge (16:52)
Yeah.
Yes, I do not like conflict. Though, actually, I’ve changed in that way too. Because I have a neighbour who tells my dogs to shut up in his backyard. Before my stroke, used to just go straight to my heart. I would like, ugh. I’d feel so bad about that. Now, I don’t care when he says that. He can tell them to shut up as much as he wants. That’s his problem.
Bill Gasiamis (17:12)
And would you approach a person like that and say to them, stop speaking to my animals like that?
Heidi Loveridge (17:18)
No.
No, I’d be scared.
Bill Gasiamis (17:23)
Okay, so you’re conflict-averse and also you don’t want to cause a situation that might escalate.
Heidi Loveridge (17:28)
Yeah.
Yeah, so I just want everybody to like me.
Bill Gasiamis (17:32)
⁓ okay. I get it. And this kind of stems back. All this is kind of stuff from when you were a kid, when you were younger and being an introvert is introverted. ⁓ introverted people, similar to people who you hear, ⁓ described as being shy.
Heidi Loveridge (17:40)
Yeah, my whole life,
Yes, I was called shy my whole childhood.
Bill Gasiamis (17:54)
but it’s actually introversion.
Heidi Loveridge (17:56)
Yeah, exactly. It’s like I don’t need like after when the COVID pandemic happened, I was actually so excited to be able to work from home. Like I changed my life, not having to go to work every day.
Bill Gasiamis (17:58)
Huh.
Wow. Is that because that meant less interactions with people in the public transport system or on the way to work or wherever? ⁓ huh. Is it debilitating or is it kind of just you? It seems like it could be debilitating for some people if they’d really trying to avoid interactions with people all the time, especially in public places where you’ve got to go shopping or you’ve got to pick up supplies.
Heidi Loveridge (18:08)
Yes. ⁓ so.
Yeah, yeah, exactly. Yeah.
Yes.
Yeah.
Yes, I was okay being in public. It’s just like, because there’s no assumption that I need to talk to people when I’m in public. So now I talk to people all the time. I’m willing to tell anybody that I’ve had a stroke, because I’m looking for people like me.
Bill Gasiamis (18:39)
okay.
Yeah. Were you, did people mistake your behavior, your introvertedness or your shyness for being rude?
Heidi Loveridge (18:49)
Thank
Yeah. Yes.
Emotional Changes and Mental Health
Yes, some people, yes. But actually, I was quite popular. I am quite popular at work. Like, everybody really likes me. So like, people might not even know I’m an introvert at work. Sometimes I can fake it so well.
Bill Gasiamis (19:08)
⁓ you’re one of those sneaky introverts that pretends they’re an extrovert.
Heidi Loveridge (19:12)
Yeah,
yes, but then totally wiped after a day at work when you have to talk to everybody.
Bill Gasiamis (19:17)
Aha. So then you come home and you don’t want to talk to anybody.
Heidi Loveridge (19:21)
No, I need, yeah, like Fridays, if people want to invite me over for dinner, was like, Fridays is hard for me. Like, I just had a whole long week and I wanted, like, do nothing for a night.
Bill Gasiamis (19:30)
Many spouses would love to hear that their partner didn’t want to speak to them after a long week for a little while.
Heidi Loveridge (19:36)
Yeah, well, I think Dave is also a quiet guy too, so he was happy. Yeah. But actually now I feel like I pushed him out of his comfort zone. Because right after this, when I got home from the stroke, I was constantly like going to people’s houses. And like
Bill Gasiamis (19:42)
You guys get each other.
And Dave’s like, who is this person always wanting to go out all the time?
Heidi Loveridge (19:56)
Yeah,
exactly. I put him in uncomfortable situations, like visiting people that he’d never met before. I’d be like, ⁓ my old coworker, Judy, she lives out here. Let’s see if she’ll have us over.
Bill Gasiamis (20:08)
and Judy said yes.
Heidi Loveridge (20:09)
Yeah, she did. And it was a, we had a lovely time together.
Bill Gasiamis (20:13)
And then you went to Judy and Judy didn’t realize that you are now no longer an introvert. You’re an extrovert because she always saw the extrovert.
Heidi Loveridge (20:19)
Yeah.
Yeah, exactly. And she was definitely an extrovert and she still is. And she’s always been.
Bill Gasiamis (20:27)
And she just thinks everything’s normal. is normal.
Heidi Loveridge (20:29)
Yeah,
exactly. Yeah, not everybody knows that I was faking it the whole time. Yeah.
Bill Gasiamis (20:33)
Wow.
So I had a friend who passed away a few years ago who used to insist that he was an introvert. I never saw it. All I ever saw was the extroverted side of him. He would be in front of a stage, in front of audiences, speaking, talking. He’d be on podcasts. He would be at your house. He would chew your ear off in a conversation. And it was like, Grant, I don’t know. think I don’t see the…
Heidi Loveridge (20:39)
Mm.
Yeah.
Mm.
Yeah.
you
Bill Gasiamis (21:05)
introvert person at all, the one that you keep telling me about. And he insisted that he was, and I even went to his house and hung out with them, um, slept there a couple of nights because they were quite away, uh, away from our place. Never ever saw the introverted side of him, but he insisted that it was, but I never had that experience.
Heidi Loveridge (21:06)
Yeah.
Hmm.
So I think my biggest success since having my stroke is that now I never used to drive before my stroke. I’ve never been a driver, but now I know I can do hard stuff. So I have my learners now. Yeah, so not until I was 44.
Bill Gasiamis (21:38)
Wow, you never got your license.
Were you afraid of getting a license?
Heidi Loveridge (21:44)
A little bit, Mostly like, I just associate driving with people just getting mad at you. Like people road raging and stuff. But now I don’t care what people think. Yeah.
Bill Gasiamis (21:45)
huh.
Uh-huh.
which happens,
which happens, but it’s very, very rare that you would get into that type of interaction.
Heidi Loveridge (21:59)
Yeah.
Bill Gasiamis (22:00)
So for that rare potential, you would rather have opted out of that than opted in.
Heidi Loveridge (22:04)
Mm.
Yeah, exactly. Nobody gets mad at you on the bus.
Bill Gasiamis (22:10)
Yeah. So.
Heidi Loveridge (22:11)
You know?
Bill Gasiamis (22:14)
So did it interfere with your, it doesn’t sound like it did, but I was going to say with your ability to get around and, you know, go to places you wanted to see and do all of that. did just Dave pick up the slack.
Heidi Loveridge (22:25)
Yeah,
he had to pick up the slack a little bit. But I also grew up very comfortable with transit. I actually grew up in Toronto, which has like subways and like it’s a way more than transit system here in Victoria.
Bill Gasiamis (22:30)
Okay.
Uh-huh.
and your
And now at 44, you have a learner’s permit and you’ve been driving for how long?
Heidi Loveridge (22:45)
Mm-hmm. Yeah.
like maybe since November.
Bill Gasiamis (22:53)
Was it exciting?
Heidi Loveridge (22:54)
I actually, I need to like bring in my inner teenager, like who’s really excited about driving, so that I like practice more.
Bill Gasiamis (23:00)
Okay. But the decision to go and train and try and get your permit was just like, yeah, I have to do this. I’ve been missing out. What was it?
Heidi Loveridge (23:02)
Yes, I also.
Yeah.
Well, I just don’t like staying home anymore alone.
Bill Gasiamis (23:16)
And if Dave’s not available, you need to be able to get out.
Heidi Loveridge (23:18)
Yeah. I’d like to go, I’d like
to take my dogs with me when I go places.
Bill Gasiamis (23:23)
Wow. And that wasn’t an issue beforehand. You never had that issue before. And in your mind, in your mind.
Heidi Loveridge (23:28)
Oh. Yes.
Yes. Actually, I have an electric bicycle that I use, but I can’t take my dog on the bike. Though we do have a dog backpack, but she’s a little bit heavy. I mean, she’s only a 20 pound sheltie, the backpack isn’t very good for that weight.
Bill Gasiamis (23:43)
Wow. When you came out of hospital, were there deficits that you had to deal with and recover from?
Finding Meaningful Connections
Heidi Loveridge (23:45)
Mm-hmm.
Yes, I left the hospital with a slip to go pick up a wheelchair and a walker from the Red Cross.
But I think I got past the walker and the wheelchair pretty quickly.
Bill Gasiamis (24:00)
So you had to use the wheelchair and the walker for what reason? What was the deficit that you were dealing with?
Heidi Loveridge (24:06)
because I had
left side weakness.
Bill Gasiamis (24:09)
Okay. And was it, your leg didn’t know where it was in the world? Was it kind of getting retrained to help you ⁓ stay up or is it still weak and still challenging?
Heidi Loveridge (24:18)
Yeah.
It’s not weak anymore, but it was weak when I left the hospital still.
Bill Gasiamis (24:25)
huh. Okay. And what about your hand, your left hand?
Heidi Loveridge (24:29)
Yes, I think I used it almost like normal except I can’t write very good anymore. Like my fine motor skills. Yeah, I’m a left handed too.
Bill Gasiamis (24:34)
and where you left him.
⁓ okay. So is it just like chicken scratchings now?
Heidi Loveridge (24:41)
Yeah, it’s a disaster. Oh, there was one point I had to go to the Service Canada, the government, to get my social insurance number updated to my married name because the system was like, it wasn’t adding up when I was trying to apply for benefits. And then I was like, he asked me to write something down. And then he said, you need to write it down so I can read it. And I said, I had to get Dave to write it for me because I couldn’t. That was the best I could do at that time. Yes. Yes, it’s legible now, I think.
Bill Gasiamis (25:07)
And has that improved since?
Yeah, does the knitting what about the knitting that that get interfered with with the hand challenge?
Heidi Loveridge (25:17)
That was, when I was in the hospital still, was one of my goals. I need to start knitting again.
Bill Gasiamis (25:22)
Aha. And that wasn’t an issue? Did you get the knitting skill?
Heidi Loveridge (25:26)
⁓ it was an issue.
I could not knit at the beginning. My hand could not do the fine motor skill at all. But I actually think I knit right handed apparently, because I can follow any pattern. So that probably helps. Like the left hand just kind of holds the needle doesn’t really do too much, you know.
Bill Gasiamis (25:30)
okay.
Okay, so you need right-handed, but you’re left-handed.
Heidi Loveridge (25:45)
But,
yeah.
Bill Gasiamis (25:49)
So I’m right-handed and then I bat. So if I was swinging a baseball bat or a cricket bat, I bat left-handed.
Heidi Loveridge (25:51)
Yes. Yeah.
Interesting. I also got left-handed. Yeah.
Bill Gasiamis (25:58)
to be weird. don’t know why. And very rare to find a left handed batsman.
Apparently it’s very rare. And anyhow, that’s one of the things that I picked up in my time, that I was a left handed batsman, but a right handed at everything else.
Heidi Loveridge (26:05)
Thank
Thanks.
That’s not post stroke though, that was your whole life.
Bill Gasiamis (26:15)
No, my whole life. Yeah. And post stroke, it’s my left hand that’s affected. So holding a bat now feels a bit weird, but yeah, I can still do it.
Heidi Loveridge (26:19)
Huh. Yeah.
Bill Gasiamis (26:24)
So six weeks in hospital, came home with a wheelchair and a walker. And what about work? Like what happened with work? How did you manage that?
Heidi Loveridge (26:27)
Yeah. Yeah. Yeah.
I was off work for a long time.
Bill Gasiamis (26:39)
Hello.
Heidi Loveridge (26:40)
Like, eight months.
Bill Gasiamis (26:44)
eight months. Wow. As well as the left side of weakness, what other deficits were you dealing with?
Heidi Loveridge (26:50)
It’s my emotions that were terrible. I used to cry all the time. I can still cry at the drop of a dime. I cried today, actually.
Bill Gasiamis (26:55)
Mm-hmm.
Yeah. ⁓ have you heard of the pseudo bulb affect?
Heidi Loveridge (27:02)
Yes, that might be something that I have, I don’t know.
Bill Gasiamis (27:07)
Yeah, nobody really diagnoses it, but it’s very common and it is a thing. And I was very, very teary for the first few years after all of my brain hemorrhages and still can get very teary ⁓ at the top of a hat. Yesterday in Australia, ⁓ well, at the moment it’s Orthodox Easter. So I went to church yesterday and I barely go to church, but every couple of, you know, there’s an event.
Heidi Loveridge (27:10)
Yeah.
Yeah.
Yes. Yes.
Bill Gasiamis (27:36)
we go, but I’m not a church goer. And I found myself getting teary at the service. And it was, that’s not what I’ve ever done before. That was a little bit strange. ⁓ I didn’t allow it to escalate two tears and crying. I hit it quite well, but it happened just out of nowhere.
Heidi Loveridge (27:37)
Yeah. No.
Yeah.
Yes.
Yeah.
Yes, yeah. I actually started going back to church since my stroke. It started as like, just want to spend time with people.
Bill Gasiamis (28:01)
Mm.
Uh-huh.
Heidi Loveridge (28:07)
but it was the church I grew up going to as a child.
So like, sure, my family’s very excited that I’ve gone back to church. The black sheep has returned.
Bill Gasiamis (28:10)
was that
⁓ Of course they have. She’s gone back
eventually. Yeah, that’s great. And do you go regularly or is it literally services and everything or is it just for the catch ups with people?
Heidi Loveridge (28:20)
Yeah.
Yeah.
I go to everything right now.
Bill Gasiamis (28:32)
Mm-hmm. You’re either all in or all out, Heidi, by the sound of things.
Heidi Loveridge (28:35)
Yeah.
Yes, it’s caused a little bit of trouble with my husband because he says we stopped going together. And we did. That’s how I met him. I met him in church. And then we both stopped going at the same time.
Bill Gasiamis (28:44)
huh.
⁓ did you guys grow out of it perhaps?
Heidi Loveridge (28:49)
Yeah. But now, I just need, I feel like I need hope in my life. That I’m not gonna feel terrible forever.
Bill Gasiamis (28:55)
hope.
Heidi Loveridge (28:57)
and I’m recognizing how lucky I am that it’s just like my emotions that are struggling still.
Bill Gasiamis (28:58)
Yeah.
Yeah. And your mental health a little. Yeah. And there was some mental health there a little bit with the, with the depression and church kind of feels that, that, that void a little bit. Sounds like church feels that space and helps you overcome that.
Heidi Loveridge (29:03)
Like physically I can do almost everything, anything I want.
Yeah. Yeah.
Yeah.
Yeah, exactly.
Bill Gasiamis (29:21)
Well, community in a church is awesome. Always communities are usually brilliant. You go to a church, there’s amazing, helpful people, supportive. You know that you can even in the worst time lean on the people in that community. They’ll rally around you. They’ll support you. They’ll support your husband, your family. So it can be an amazing place to hang out, even if you’re not really churchy or religious or anything like that.
Heidi Loveridge (29:24)
Yeah. Yes.
Yeah.
Yeah. Yeah, exactly.
Yeah.
Bill Gasiamis (29:50)
And it’s no different to that would, that would, you know, like-minded people. It’d be no different to being part of a sports club or some other knitting club or any other kind of club.
Heidi Loveridge (29:54)
Yeah.
Yes, I’m also part of a woman circle.
Bill Gasiamis (30:06)
That doesn’t surprise me. Tell me about the woman circle. What do they do there?
Heidi Loveridge (30:08)
Yes.
So we get there and you talk about things in your life that are bothering you. So right now it’s my stroke. It’s so stroke related.
Bill Gasiamis (30:17)
That’s brilliant. And how many women get together and how often?
Heidi Loveridge (30:21)
There’s eight of us and we get together about one every week, Tuesday evenings. In person, yeah.
Bill Gasiamis (30:25)
In person.
You wouldn’t probably do a zoom one now, would you?
Heidi Loveridge (30:31)
I’d rather not. I like people in real life better. Yeah. Yes. Old Heidi. Once a week was a big commitment.
Bill Gasiamis (30:33)
Yeah, the old Heidi would, but this Heidi, no.
So the woman’s circle, that’s brilliant. So women from the community that you didn’t know when you to the circle.
Heidi Loveridge (30:45)
Yeah.
No, I didn’t, we didn’t, I didn’t, there were no friends. So like there’s no baggage. Like there’s no like, can’t tell this, they know my sister. Like they don’t know my sister.
Bill Gasiamis (30:56)
⁓ Okay. Like your own circle of people where you can just go and be you and you don’t have to worry about anything else getting out.
Heidi Loveridge (31:04)
Exactly. Yeah.
Bill Gasiamis (31:09)
I like that. That’s why I used to go to counseling. So I could just have my counselor there who had my back, but was willing also to test me and also willing to, what’s the word? ⁓ mostly test my, my thinking, you know, like you push back on the things that I would say, but whatever I said there, yeah, there was no, there was no judgment. was no interaction. was anything other than about me. And I was able to express how I wanted to express it.
Heidi Loveridge (31:15)
Yeah.
Yeah.
So, yes.
Bill Gasiamis (31:38)
but get some, get some guided support and counseling and feedback that was not based on me being right or wrong. It was just feedback.
Heidi Loveridge (31:39)
Yeah, exactly.
Yes.
It wasn’t judgmental feedback like, you’re an idiot for feeling that way.
Bill Gasiamis (31:56)
Yeah, yeah, it was how helpful is that to you to think like that about your brother Bill? And I’d be like, hmm, maybe it’s not so helpful to think about my brother in that way. Okay. And then the next question might be, well, how, how might you think about your brother? That is helpful, even though he did something that bugged you or annoyed you or frustrated you as, as your, ⁓ your, your childhood relationship has
Heidi Loveridge (32:05)
Yeah.
Mm-hmm.
So, thank
Bill Gasiamis (32:24)
moved into your adult life, you know, because sometimes we don’t realize that we’re still pretending as adults that we’re 13 year old kids. And I used to react like a 13 year old kid when my brother would do something or say something that was never mentored, never meant in a way for me to, you know, to get offended or upset about, because I was a 13 year old kid responding. And it was like, okay, here’s some feedback for you about how you respond and whether or not it’s helpful at all. And whether or not
Heidi Loveridge (32:26)
Yeah.
Yeah.
So.
Exactly.
Yeah.
Bill Gasiamis (32:54)
actually you can park that behavior, your response to the 13 year old, just park it there and find a new way to respond, evolve.
Heidi Loveridge (33:02)
Yeah, exactly. And your brother will mind if you respond in a nicer way.
Bill Gasiamis (33:04)
I like your approach.
My brother would definitely not mind if I responded in a nicer way. He definitely appreciated that. And I could find a different way to tackle my problem with what he said by just being a normal human being and communicating instead of reacting like a 13 year old younger brother.
Heidi Loveridge (33:11)
or believe.
Yeah.
Yeah, exactly.
Bill Gasiamis (33:25)
But I do like your ⁓ mild mannered nature. I do like that kind of approach as well and avoiding conflict and finding ways to get around conflict. That’s pretty cool. I think that’s a good skill to have because conflict usually doesn’t achieve anything in most scenarios. It just makes things worse. Yeah. Yeah. So that’s kind of my where I went to get that kind of support. But there are men’s groups and ⁓
Heidi Loveridge (33:29)
Yeah.
Yeah.
Yeah, most of time it doesn’t. No, yeah it really does.
Mm. Yeah.
Mm. Mm-hmm.
Bill Gasiamis (33:54)
glad to hear there are women’s groups that
the other stroke survivors listening perhaps might get here’s the idea I could do a little bit of a search and find one and if you can’t get out and about perhaps there is an online one and you are happy to do an online one that’d be a great place to start.
Heidi Loveridge (34:01)
Yeah.
Mm-hmm.
Yeah.
Bill Gasiamis (34:15)
Does it also help that the other women share their challenges and their things that they’re going through?
Heidi Loveridge (34:19)
Yeah.
Yeah, it’s like, it makes you realize you’re not the only one struggling. We just all have a different kind of struggling that we’re doing.
Bill Gasiamis (34:24)
Mm-hmm.
Hmm. As an introvert previously, did that exacerbate how you felt about things not connecting with a lot of other people in a deep and meaningful way like that? Perhaps did that make your feelings of I’m the only one going through this more or worse?
Heidi Loveridge (34:28)
It’s not necessarily worse than anybody else’s.
Mmm.
Yeah.
Yes, I think I just preferred meaningful conversation as opposed to like, how’s the weather? Which I found was hard to get in large groups.
Bill Gasiamis (34:56)
Yeah.
Yeah.
I have a similar kind of need. I need to not be talking about the previous day’s football scores or ⁓ what the prime minister did or…
Heidi Loveridge (35:07)
Yeah. Yeah,
something that matters you want to talk about.
Bill Gasiamis (35:13)
Yeah. Yeah. Because usually people talking about the daily happenings, they’re not, just talking at a surface level. They’re just expressing very narrow views about things that they don’t know much about at all. And they’re not really going, they’re not taking a deep dive. And all I feel like they’re doing is exacerbating their pain and suffering by reiterating what they think they’ve heard or they think is happening that and how it impacts them and makes
Heidi Loveridge (35:19)
Yeah.
Hmm.
Yeah, exactly.
Bill Gasiamis (35:43)
then feel bad. If you tune out from the news and you don’t watch the news for a week or two, then the, haven’t missed anything. you can, it’s like days of our lives. You could just pick up six months later. What you do is tune into the one episode every six months and you just pick up where you left off.
Heidi Loveridge (35:48)
No.
Exactly.
Spirit true.
Overcoming Limitations and Embracing ChangeBill Gasiamis (36:04)
So tell me a little bit about ⁓ what it was like coming home for the first time after your six weeks. it daunting? Did you feel things you’d never felt before? What was it like?
Heidi Loveridge (36:15)
Yes, yes, felt daunting.
Like, I’d lost my desire to cook. So fortunately, a friend from my woman’s circle, knew a guy that made frozen meals. And that was amazing. And I filled up my freezer.
But like, people feeding me with them made me so happy. Like, thank you. I actually lost 20 pounds since that stroke.
Bill Gasiamis (36:37)
because you moved less, sorry, you ate less, even though you moved less initially.
Heidi Loveridge (36:41)
Yeah.
Yeah,
yeah exactly. I mean I guess hospital food is notoriously not that good. So I don’t know if that’s what started it.
Bill Gasiamis (36:52)
Yeah. But
you couldn’t even find a… Were you able to cook for yourself or?
Heidi Loveridge (36:59)
Yes,
yeah. In occupational therapy at the hospital, that was one my things. said, I need to cook something. So I made spaghetti sauce and pasta in the hospital.
But of course I wasn’t hungry at the time, so I didn’t eat it.
Bill Gasiamis (37:09)
And then when you came home.
yeah, but you made it.
Heidi Loveridge (37:12)
Yeah.
Bill Gasiamis (37:13)
And then when you came home, you didn’t have the desire to do.
Heidi Loveridge (37:18)
No.
Bill Gasiamis (37:20)
And was, is that a role that you kind of played in your relationship with Dave at the house? huh. And has that had to flip over? Is Dave taken over that task now?
Heidi Loveridge (37:24)
Yeah, yeah, I used to always plan the food and stuff,
Yeah, he
had to step up a little bit more. But actually I’m a little bit transitioning back to the Heidi that makes dinner.
Bill Gasiamis (37:40)
Okay, so you found your way back. You’ve been able to kind of find your way back.
Heidi Loveridge (37:42)
Yes, I’m sort
of my way back a little bit. Yeah.
Bill Gasiamis (37:46)
Do you feel like that’s part of the recovery kind of continuing and evolving and you’re kind of getting back to your old self?
Heidi Loveridge (37:51)
Yeah.
Yeah, I hope so.
I used to be so happy though with my stroke and I’m not happy anymore.
Bill Gasiamis (37:56)
Hmm, sounds like it.
You’re not happy.
Do know what you’re not happy about?
Heidi Loveridge (38:04)
No, it doesn’t feel like it’s anything specific. Like, I know I can do everything I need to do or want to do. So actually at Christmas time, I did try cross-country skiing. It was really hard.
Bill Gasiamis (38:10)
Mm-hmm.
Was it fun?
Heidi Loveridge (38:15)
Not as fun as it should have been. It was more hard than fun.
And actually, it’s what.
Bill Gasiamis (38:19)
Did that make you happy?
Unhappy.
Heidi Loveridge (38:21)
The idea of doing it made me happy, but the fact that I was sucked at it was not as happy.
Bill Gasiamis (38:27)
Are you also a
high achiever?
Heidi Loveridge (38:30)
Maybe.
Bill Gasiamis (38:31)
Do you also like, are you really hard on yourself when you can’t do something perfect?
Heidi Loveridge (38:37)
Yes, I like things to do, you guys have done well.
Bill Gasiamis (38:40)
Are you a perfectionist?
Heidi Loveridge (38:43)
I don’t know if I’m a perfectionist. I actually have, when I do mistakes in my knitting, sometimes I’m just like, I don’t want go back and fix that and I just let it go.
Bill Gasiamis (38:50)
Okay, but that’s very wabi-sabi. Do you know wabi-sabi? That’s Japanese term for like, okay to have imperfection in something, right? The imperfection is necessary.
Heidi Loveridge (38:52)
Mm-hmm.
Yeah. Yeah.
Yes, actually, listen, there’s a lady that does fat like those fashion podcasts. Can’t remember her name is anyways, but that was how like she said, if something is claiming to be handmade, you need to able to find a mistake in it. Or else they’re pulling you pulling one over your eyes.
Bill Gasiamis (39:18)
I love
Heidi Loveridge (39:19)
And so I totally embraced that. Mistakes mean you made it by hand.
Bill Gasiamis (39:19)
Yeah.
but not being able to be a good cross-country skier, that sucks.
Traveling Beyond Borders
Heidi Loveridge (39:27)
Yeah,
yeah, because in where I live in Victoria, we have very moderate weather, so like we don’t really get snow. So at Christmas time, I was visiting some family in the middle of the province, like in a place called Vernon, and there’s a ski hill there called Silver Star Mountain. And so there was snow and I was like, I wanted to be able to enjoy the snow.
but I don’t want it to snow here.
Bill Gasiamis (39:49)
Were
you… No, I get it. I don’t enjoy snow either. I’d rather it was up in the mountains far, far away from me too.
Heidi Loveridge (39:56)
Yeah, very far for you though.
Bill Gasiamis (39:59)
Yeah, for me, it’s not that far. It’s about four hours away. I can get to snow in winter about four hours away from here.
Heidi Loveridge (40:06)
I didn’t realize there was any snow in winter in Australia.
Bill Gasiamis (40:10)
there’s heaps. Yeah. There’s, there’s at least three, three or four snowfields I can go to one in the state. ⁓ more than one in the state here. It’s there’s one Mount Buller is in Victoria where I can go skiing, proper skiing. Like it’s got the whole stuff resorts and everything up there. And then there’s a lot of lower little mountains that you can go and just make snowballs and throw them at your kids. Those ones are the fun ones. We’ve been to those ones, Lake Mountain.
Heidi Loveridge (40:18)
Mm.
Transforming Personal IdentityYeah. Yeah. Thanks.
Nice. Yeah.
Bill Gasiamis (40:39)
And then in New South
Wales, which is a few thousand kilometers away, it’s about a thousand kilometers away, that ⁓ they’ve got some amazing snow fields up there and people do go there, but they’re not, it’s not Canada, it’s not Japan. They’re not like that level, but they’ll do for a good local ⁓ snow trip. They do get full, people do go, they quite enjoy it, but I wouldn’t.
Heidi Loveridge (40:50)
Hmm.
No. Yeah.
Yes, there’s one kind of big ski hill on Vancouver Island. It’s called Mount Washington. It’s about three hours away. But I’ve never been a big skier. I grew up in the city where skiing wasn’t… Ontario’s not known for having skis. I mean there are some, but they’re not big.
Bill Gasiamis (41:12)
Okay.
Okay.
So are you a good skier?
Heidi Loveridge (41:23)
No.
Bill Gasiamis (41:25)
Okay, so you’re not a good skier. You did cross country skiing. You it was hard because you’re just generally not a good skier and you still got you still felt bad about it.
Heidi Loveridge (41:28)
Yeah.
Yeah, because I still must be a little bit weak still on my left side obviously.
Bill Gasiamis (41:41)
⁓ Okay, so what you did is you associated your inability to be great at it or for it to be a little bit easier to your deficit still.
Heidi Loveridge (41:46)
Yeah.
Yes, exactly.
Bill Gasiamis (41:53)
And how does that make you feel knowing that you still have a deficit where your left side is a little weaker?
Heidi Loveridge (41:58)
Yeah, I feel like it makes me feel like I need to work on it.
Bill Gasiamis (42:02)
Okay, would it be better? Would you be happier if that was perfect?
Heidi Loveridge (42:08)
problem maybe. But it doesn’t really affect my day to day life though.
Bill Gasiamis (42:10)
Maybe, probably.
Yeah, interesting. Is that an acceptance thing, perhaps?
Heidi Loveridge (42:15)
Yes, so
yeah.
I just want to be able to live my life like a, like feel normal again.
Bill Gasiamis (42:23)
Uh-huh. know what you mean because the left side feels completely different to the right side. And you always have the reference. You have one always making you appreciate the way that they’re different and therefore, quote unquote, not normal.
Heidi Loveridge (42:26)
Yeah. Yeah.
Yeah.
Yes, I actually went for a quite a large bike ride last weekend and I was so, I was really tired by the end. I was like hunching over like even just like, I mean it was electric bike, right? So I didn’t have to like power it myself, but just like the strength required to like keep going straight. Totally tired me out.
Bill Gasiamis (42:54)
Yeah.
I
haven’t, I have an air bike. remember when I first got it was for exactly that reason. So I can keep riding my bike and not get tired riding it and then being able to get home. Cause what I used to do was on the old bike, I would go to my destination, which might be 10 kilometers away into the city. And then getting back was a real challenge. So, ⁓ had had the
Heidi Loveridge (43:04)
Hmm
Mm.
Yes.
Yeah.
Bill Gasiamis (43:26)
got the e-bike and then realized I could just keep riding all day, but then would come home literally after maybe a 20 kilometer ride and be spent for the rest of the day and just completely gone. But then with time and as the years passed, I noticed that my bike rides wouldn’t do that to me anymore. And I’d have to come home and have a good rest for an hour, an hour and a half too. But then I was back to my tasks.
Heidi Loveridge (43:37)
Yeah.
Thanks.
Yeah.
Bill Gasiamis (43:53)
for the rest
of the day, it wouldn’t be an issue. So it does take a bit of time, similar to how you’re getting back to cooking. It does take a little bit of time. Even though my weakness is still there, I still have that ability to go and do those things that were physically more challenging.
Heidi Loveridge (43:59)
Yeah.
Yeah.
Innovations in Stroke TreatmentBill Gasiamis (44:10)
So yeah, it’s a very interesting conversation. It’s interesting to hear your perspective as somebody who described herself as a introvert back then, an extrovert now, somebody who has overcome some amazing things and gone and got your license at 44. It’s such an interesting thing to hear.
Heidi Loveridge (44:15)
Yeah, sure.
Yeah. Yeah.
Yeah.
Bill Gasiamis (44:40)
Do you see the blessings of stroke? Is there such a thing? I, like, I, can you say that about it? Would you say it that way? I know it’s a bit weird to hear that sentence, but.
Heidi Loveridge (44:52)
Yes, I can’t wait to be able to feel that way fully.
Bill Gasiamis (44:56)
Okay, so you have a glimmer of it. you like to have a little glimmer of it because of the changes that you’ve made that you appreciate?
Heidi Loveridge (44:59)
Yeah.
Yeah.
Bill Gasiamis (45:05)
but you can’t fully feel that yet. I get it. It’s early days, right?
Heidi Loveridge (45:09)
Yeah, I’m about 10 months post-stroke now.
Bill Gasiamis (45:12)
Yeah, so early and so many big. Yeah, and so many big changes so rapidly.
Heidi Loveridge (45:15)
That’s what everybody keeps telling me.
The Journey to HappinessMmm
Bill Gasiamis (45:22)
That’s a lot to, it is a lot to deal with. A, you had a stroke. B, you had to overcome all the deficits. And now you have these personality traits that are different from your previous personality traits. It’s a lot of change, a lot of adjustment.
Heidi Loveridge (45:27)
Yeah.
Yeah.
Yeah, and like when I left the hospital, nobody would tell me that I was going to be okay. Because like, you can always have another stroke. I mean I always could have had a stroke before I even had one. I just said no, I needed to be nervous.
Bill Gasiamis (45:45)
Hmm.
But now you know you’ve had one so it might happen again
Heidi Loveridge (45:52)
Yeah, exactly.
Bill Gasiamis (45:54)
Are you on blood thinness or anything like that?
Heidi Loveridge (45:56)
Yes, I’m on blood thinners now.
My neurologist said do not get pregnant and do not go off your blood thinners.
Bill Gasiamis (46:02)
Okay. Do not get pregnant. Why is that a risk?
Heidi Loveridge (46:06)
Well, because your blood starts clotting more when you’re pregnant, so you don’t bleed out when you have a baby. Your blood does get thicker during pregnancy.
Bill Gasiamis (46:14)
⁓
Okay, so now he would like you to avoid that if you can.
Heidi Loveridge (46:20)
Yes,
yeah we don’t want to add anything to the weird reason why my blood clots started clotting anyway.
Bill Gasiamis (46:26)
I see. Okay. So blood thinners, is that a permanent thing or are they talking about perhaps, ⁓ something getting you off that at some point?
Heidi Loveridge (46:35)
No, think it’s permanent.
Bill Gasiamis (46:37)
And what are the things that you would like to kind of achieve or do in the future now that you’ve had this?
Heidi Loveridge (46:48)
Life changing event. I want to travel more.
Bill Gasiamis (46:49)
thing occurred to you.
Have you ever traveled the outside of Canada?
Heidi Loveridge (46:53)
Okay.
Yes, I went to England to visit my sister once. And I loved it in England. There was so much history and so much old stuff. I thought it was so marvelous. And public transportation is amazing in England.
Bill Gasiamis (47:04)
Mm-hmm.
Yeah, apparently you could get that the tube.
Heidi Loveridge (47:09)
Can you tell that I work
for transit? Like I love transit.
Bill Gasiamis (47:12)
Okay.
So not only did you not drive, you worked for the organization that was the alternative to driving.
Heidi Loveridge (47:18)
Yeah,
yeah, exactly.
Bill Gasiamis (47:21)
Okay, so you had to embrace it, you embraced it fully. And one of the highlights of traveling to the United Kingdom was seeing the public transport system.
Exploring Alternative TherapiesHeidi Loveridge (47:25)
Mm-hmm, yeah.
Yeah. And also, there’s so many, like walking there is amazing. There’s so many places to walk. Like there’s paths everywhere.
Bill Gasiamis (47:38)
Mm-hmm.
So it’s a very livable city.
Heidi Loveridge (47:39)
Yes.
Yes. The country is livable, I find, for that reason.
Bill Gasiamis (47:46)
Yeah. Okay. ⁓ did you have a, I’m a mortal moment as well. It sounds like you might’ve had a, I realized that I became a mortal all of a sudden.
Heidi Loveridge (47:55)
Yeah. Yes.
Yes. I just realized, like, you know, could die at any moment.
Bill Gasiamis (48:02)
Did the introversion stop you from living your life fully? Is that what it did? And now that you’re not that, you’re having these experiences that you perhaps missed out on or you weren’t able to embrace.
Heidi Loveridge (48:15)
No, I was living the life I wanted to live at the time.
Bill Gasiamis (48:19)
huh. So it’s just, you want to live a different life now. It’s just changed.
Heidi Loveridge (48:23)
Yeah,
exactly. I definitely want to travel more now.
Bill Gasiamis (48:28)
Do you have an explanation for it though? Do you know one of those deeper underlying explanations, not because, just because.
Does it sound like you do?
Heidi Loveridge (48:39)
No, I don’t. don’t have a good reason for it.
Bill Gasiamis (48:43)
But it’s good enough.
Heidi Loveridge (48:44)
Yeah.
Bill Gasiamis (48:45)
I love it. Why not?
Heidi Loveridge (48:47)
Yeah, exactly.
Bill Gasiamis (48:49)
So, but Dave is also dealing with all of the stroke and all of the things that happen to you. You know, nearly lost his wife to a stroke and all that kind of stuff. How old is Dave?
Heidi Loveridge (48:54)
Yeah. Yes. Yeah.
He’s 48.
Bill Gasiamis (49:03)
Yeah, right. So he’s kind of amongst other things and I don’t want to talk for him because I’ve never met him, met the man. But I imagine as a spouse is thinking what’s going on here.
Heidi Loveridge (49:07)
Yeah.
Yeah, with the changes, but he had to live with the, like, embrace the fact that I might be disabled for rest of my life.
Bill Gasiamis (49:22)
Mm-mm.
Heidi Loveridge (49:24)
Actually, my neurologist told me, oh, I couldn’t have picked a better spot to have a stroke in my brain.
Bill Gasiamis (49:29)
Uh-huh.
Good on you. You are a high achiever.
And why did he say that? It’s just simply because of the lack of damage that occurs there or
Heidi Loveridge (49:38)
Yeah, he must have been in a good spot, I guess because I was physically doing so well.
Bill Gasiamis (49:44)
Well, that’s good. It sounds like it didn’t have a major, there wasn’t a major kind of clotted that impacted a lot of the brain in that space as well. It sounds like it was like isolated, quite isolated.
Heidi Loveridge (49:55)
Yes,
yeah, but it was considered a major stroke when I was at the hospital. I actually had it actually had a little bit of hemorrhagic components so I did have bleeding in my brain too.
Bill Gasiamis (50:06)
⁓ in the same location.
Heidi Loveridge (50:09)
Yeah.
Bill Gasiamis (50:11)
The blood clot also caused a little bit of bleeding.
Heidi Loveridge (50:14)
Yes.
Bill Gasiamis (50:15)
I didn’t know that that was a thing.
Heidi Loveridge (50:17)
Yes, it’s called a hemorrhagic component.
Bill Gasiamis (50:20)
I imagine that’s uncommon.
Heidi Loveridge (50:23)
I don’t know. It meant that they couldn’t put me on blood thinners right away. So I actually had to get a filter installed in my main vein coming out from my leg on my neck.
Bill Gasiamis (50:31)
Uh-huh.
a filter. What did the filter do? What was its role?
Heidi Loveridge (50:34)
Yes.
It was to collect any blood clots to prevent them from entering my brain.
Bill Gasiamis (50:40)
huh. Any blood clots that may still be in the circulatory system.
Heidi Loveridge (50:44)
Yeah, exactly. And because of the bleed, they couldn’t put me on thinners, blood thinners right away, so they had to, like that was kind of the interim measure to help protect me.
Bill Gasiamis (50:47)
Wow.
How long was that in for?
Heidi Loveridge (50:57)
maybe a week or something.
Bill Gasiamis (50:59)
Okay, and it’s just inserted into your artery in your thigh.
Heidi Loveridge (51:03)
Yeah, actually it went in through my neck but they took it out through my other thigh.
Bill Gasiamis (51:07)
Okay.
Heidi Loveridge (51:08)
and it was full of clots when they took it out.
Bill Gasiamis (51:10)
It was, was it?
Heidi Loveridge (51:11)
Yeah.
Bill Gasiamis (51:12)
unbelievable that this thing I’ve never heard of that thing either that it just goes in there and it sits there and collects cloths and then they just take it out.
Lessons Learned and Moving ForwardHeidi Loveridge (51:13)
Yes, I think they call it an
IVF filter.
Bill Gasiamis (51:22)
Wow.
That’s fascinating. And it came out in a week and then you were able to then go on blood thinners.
Heidi Loveridge (51:28)
Yes. Yeah,
exactly. Once the bleeds are to stabilize in my brain.
Bill Gasiamis (51:34)
Yeah, fabulous.
Heidi Loveridge (51:35)
Mm-hmm.
Bill Gasiamis (51:36)
That’s just, every time I speak to somebody who’s had a stroke on my podcast, I learned something new every time. I’ve been doing this for 10 years and I was talking about it a little while ago, but it never seems to get old. It still doesn’t feel like for me that it’s getting old to learn all these different things that are possible now that I don’t think were possible 10 years ago. ⁓ Filters, ⁓ you there’s different methods of helping people overcome a secondary.
Heidi Loveridge (51:40)
Mm-hmm.
Yeah. Yeah.
⁓
Thank
Yeah.
Bill Gasiamis (52:05)
lot, how people ⁓ avoid deficits by improving how quickly hospitals respond and how they respond and with what technology they respond. It’s just amazing that things are improving so much. And there are so many people that are good on the podcast who had a stroke who are doing very, very well after what I consider to be a short amount of time, because people often sort of say, you know, how long the stroke recovery take? it’s like,
Heidi Loveridge (52:10)
Mm-hmm. Yeah.
Yeah.
Bill Gasiamis (52:33)
It doesn’t take, it doesn’t have a timeline. just continues.
Heidi Loveridge (52:36)
Yes,
continue forever. That gives me hope that one day I can be happier again.
Bill Gasiamis (52:39)
Yeah, it just continues. ⁓
I absolutely believe you could be happier again. And I feel like ⁓ with incremental improvements, one thing that might continue to incrementally also improve is your happiness level. And the depression will perhaps start to find a way to abating now and then decreasing in how it impacts your life. And then the happiness sort of moving into that space and increasing.
Heidi Loveridge (52:52)
Yeah.
Mm-hmm. Yeah, I hope so.
Yeah.
Yes. ⁓
Bill Gasiamis (53:13)
dialing it up, turning it up a little and increasing that ⁓ level of happiness and then kind of staying there and then being the thing that is more common.
Heidi Loveridge (53:15)
Wow.
Yes, I can’t wait till happiness is more common.
I actually went to something called red light therapy the other day.
Bill Gasiamis (53:29)
Yeah.
Tell me about that, yeah.
Heidi Loveridge (53:35)
So you probably heard seen people with like the funny face masks like to improve your skin with red light. But there’s also, I got a helmet on my head and like is to put like red light into your brain. And there’s actually been studies on it.
Bill Gasiamis (53:40)
Yep. Yep.
Yes.
Yes. How long does it?
Absolutely, there’s been studies and how long does it last the session?
Heidi Loveridge (53:53)
So maybe it was 20 minutes.
Bill Gasiamis (53:55)
And do know the spectrum or the strength or any of that stuff? Did you get any of that detail?
Heidi Loveridge (54:00)
I don’t know what offed off my head, unfortunately.
Bill Gasiamis (54:03)
Yeah, it just goes on your head and then I switch it on and then you sit there. I imagine you probably took your knitting.
Heidi Loveridge (54:06)
Mm-hmm. Yep.
I didn’t actually.
Bill Gasiamis (54:14)
Fair enough. So you sit there for… Yeah, that’s right. So you took about 20 minutes and then you’re going back for more. And did you notice anything?
Heidi Loveridge (54:16)
I can handle people now.
Yep.
I didn’t notice anything, but it’s actually not cheap. So like they wanted to sell me $800 for 12 sessions.
Bill Gasiamis (54:31)
Wow.
Heidi Loveridge (54:32)
And so I’m not covered with benefits. However, they did talk me into doing some laser acupuncture tomorrow.
Bill Gasiamis (54:40)
Laser acupuncture. I’m learning a lot. I’ve never heard of that either.
Heidi Loveridge (54:46)
Yeah, me neither. Apparently, so does the same thing to me, needle.
Bill Gasiamis (54:48)
It’s not with needles.
There’s no needle.
Heidi Loveridge (54:53)
No. So for anybody that squeamish, it’s a way to get acupuncture.
Bill Gasiamis (54:56)
my gosh.
Okay, I’m gonna have to look into that as well.
Heidi Loveridge (55:01)
Yes, I heard that in China. It’s normal protocol after strokes to get lots of acupuncture.
Bill Gasiamis (55:07)
It is. I actually had acupuncture after the stroke and what I find is that it is a very temporary support measure. does help and it helps for a short amount of time. So ⁓ that doesn’t mean I’m not encouraging people to try it out or have a look at it. I consider it just as temporary as massage.
Heidi Loveridge (55:10)
Mm.
Yeah.
Mm-hmm.
Hmm
Bill Gasiamis (55:32)
because I go and get massages all the time because my left side just gets tight and everything gets out of whack. And I can go and get a massage and get relief for three days, three or four days. But then, you know, it’s back and I can’t afford to go and pay for a one hour massage session, which costs $100. I can’t afford to do that on a weekly basis. So I go once a month. And by the time I get to the next appointment,
Heidi Loveridge (55:32)
Yes. ⁓
Yeah.
Bill Gasiamis (56:01)
You know, week four is usually the hardest week and I can stretch and I can do all sorts of things, but the knots end up in places where, you know, you need somebody’s hands to go in and just deal with them. And I can’t get.
So it’s acupuncture feels like that.
Heidi Loveridge (56:19)
I actually so there’s a Yeah, there’s a co-worker that used to work via bus driver. However after she retired she got acu- no not she got chiropractor and then she got a stroke from the chiropractor Busting a vein in her neck. Yeah
Bill Gasiamis (56:35)
Manipulation. Yeah,
that’s not rare. Unfortunately, that happens.
Heidi Loveridge (56:41)
⁓
Yes, of course she was so disappointed. She’s like I took care of my health my whole life and then this guy does this to me
Bill Gasiamis (56:49)
Yeah. ⁓ I’m not sure what the, what the situation is with that. Like what happens when that happens, like how somebody gets compensated or whatever. imagine the chiropractor has medical, some kind of insurance or something. Yeah. But, ⁓ that would be horrific for a chiropractor to find out that a manipulation of the neck caused damage to their patient.
Heidi Loveridge (56:57)
Yeah.
Yeah, hey boss.
Yeah.
Bill Gasiamis (57:17)
And if there’s anything, I have a friend of mine who’s a great chiropractor who I see very, very often. And he’s the one that picked up my ⁓ brain hemorrhages in that I went and saw him for what I thought was a pinched nerve. And he said, well, there’s something wrong other than a pinched nerve. It’s not your back. It’s not your spine. You need to go to the hospital.
Heidi Loveridge (57:24)
⁓
Hmm. Hmm. Yeah.
Bill Gasiamis (57:43)
And when
I eventually went to the hospital, they found the bleeding in my brain. Now he didn’t cause that, but he was the one that was the first sort of port of call for me. Cause I thought I had done something bending over.
Heidi Loveridge (57:48)
No.
Yeah.
Bill Gasiamis (57:58)
And he’s the one who sort of said to me, go and see a doctor about this. And since then, that was 14 years ago. Since then, he’s had another patient that came to him with stroke symptoms, who he said, you need to go to a hospital ⁓ as well. So they’d be horrified to find out that a manipulation of the neck while on their table caused one of their patients stroke.
Heidi Loveridge (58:08)
Yes.
Yeah,
yes because everybody knows that stroke is a big deal.
Bill Gasiamis (58:29)
Yeah, it can be deadly.
Heidi Loveridge (58:31)
Yep. Yes, we’re the lucky ones.
Bill Gasiamis (58:35)
Absolutely, we are. And this seems to be more and more people that are managing to stay alive because of the amazing technology that we have access to these days that we haven’t had previously. ⁓ So
Heidi Loveridge (58:46)
Yeah.
Exactly.
Bill Gasiamis (58:52)
How it, what was the other than coming and connecting and chatting to me and being able to be extroverted, what else were you happy to achieve by coming on the podcast?
Heidi Loveridge (58:57)
Yeah. Yeah.
Well, I wanted to give other people hope.
that maybe they can be okay too.
Bill Gasiamis (59:09)
Yeah. Okay. It looks different for people as well. Right. So sometimes, okay. It mean that your deficits all go away. It means that you might, you might be able to achieve emotional okayness or mental okayness well with the stuff that you’re dealing with, even though you’re not going to be perfect at it, even though you can have bad days, even though it’s going to ugly and shitty and dark, like still we’re going to
Heidi Loveridge (59:11)
Yeah, exactly.
Yeah, exactly.
Yeah.
Mm. Yeah.
I’m going to to
Bill Gasiamis (59:38)
maybe perhaps be okay navigating all of that and get to the other side where we’ll be able to.
Heidi Loveridge (59:40)
Yes, exactly.
Bill Gasiamis (59:44)
beef feel feel like yeah, feel like we’re okay, you know, even though we know it’s hard and there’s tough times.
Heidi Loveridge (59:44)
Live a life that’s worth living.
Yeah.
Yeah.
I guess life, people say life isn’t supposed to be easy, but… If I say well wasn’t supposed to be this hard, yeah.
Bill Gasiamis (59:58)
Well, yeah, do you feel like you’re…
Yeah, did you feel like it was easy beforehand compared to now?
Heidi Loveridge (1:00:04)
Yes, yeah.
And I was just easily happy before too.
Bill Gasiamis (1:00:09)
Hmm. And now the things that you desire, the things that come with a lot more effort seems like they’re a lot harder to attain.
Heidi Loveridge (1:00:20)
Yeah.
Bill Gasiamis (1:00:23)
Does that make you feel like ⁓ you need to step up and do more? Is that what it makes you feel like? What do you feel like? Say again.
Heidi Loveridge (1:00:30)
I wish I knew what to do.
I wish I knew how to get neuroplasticity to make me happy.
Bill Gasiamis (1:00:36)
Hmm. You know, sometimes they say, I don’t know if this is me just minimalizing it and like being completely ignorant about the situation because I am ⁓ act as if you are happy. You know, those laughing classes.
Heidi Loveridge (1:00:40)
Mmm.
Yes, yeah,
like fake it till I make it.
Bill Gasiamis (1:00:55)
Yeah, like you did with extraversion.
Heidi Loveridge (1:00:58)
Yeah, exactly. I did fake it now I made it. Now I can be extra real.
Bill Gasiamis (1:01:04)
Yeah.
Yeah, maybe. I don’t know. It could be the hack, your hack, you know, you just pretend that you’re happy. Not. I don’t want to say that in the most. I don’t want to be insensitive when I say that. And I’m not saying to do that as a way to make other people think you’re happy. I’m saying to act as if you are happy so that you can potentially maybe perhaps. ⁓ Yeah.
Heidi Loveridge (1:01:20)
Thanks.
Yeah, I know.
Yeah, feel actual happiness. ⁓
Bill Gasiamis (1:01:32)
illuminate those neuronal pathways where happiness
occurs so that they stick right but also maybe you can imagine yourself being happy in a meditation because imagining yourself also lights up those neural pathways.
Heidi Loveridge (1:01:39)
Exactly.
And, yeah.
Yeah.
Yes, exactly like you said you were imagining yourself walking before you could walk. And it lights up the same areas. Thinking is the same as actually doing.
Bill Gasiamis (1:01:54)
Indeed, yeah.
It does. And I felt like I was.
It is, yeah. And there was a study recently that, ⁓ my gosh, I wish I now I just remembered, I don’t know if I’ve saved that information. There was a study recently ⁓ that revealed that even thinking a particular way about yourself. Activates ⁓ muscles.
Heidi Loveridge (1:02:20)
Yeah.
Bill Gasiamis (1:02:26)
or speaking about yourself. So you’re to have people speak negatively about themselves. And there’s been lots of studies to sort of show that just thinking negatively about yourself is the same as saying it. What they’ve shown is the next stage of that, which is just thinking negatively about yourself or positively about yourself actually fires off fibers, muscle fibers in the jaw, in the mouth, where people usually where it goes to next when you start speaking. So
Heidi Loveridge (1:02:27)
Mm-hmm. Yeah.
Yeah.
Thank you.
you
Bill Gasiamis (1:02:56)
It feels like the circuit they’re talking about the circuit is much larger than just I thought about it, that it doesn’t have any more impact on the body. Yeah, but it definitely does. It ends in the way that your ⁓ dopamine activates your serotonin, you all those kinds of things. And then it also ⁓ fires off muscle fibers before
Heidi Loveridge (1:02:58)
Yeah.
Yeah. Yeah, it doesn’t end there. Yeah.
Thank you.
Yeah.
Bill Gasiamis (1:03:25)
that stage before the jaw moves and speech happens. So it’s really important to, if you can fake it so that you’re practicing what it’s like to be happy, perhaps that might be the thing. But then also I want to make sure people are very aware and comfortable in understanding that if you feel unwell and then if you feel unhappy and if it is a problem that you don’t gloss over it and pretend that you’re okay.
Heidi Loveridge (1:03:27)
Yeah. ⁓
Mm-hmm.
Yeah.
⁓
yes.
Bill Gasiamis (1:03:54)
You definitely seek support in any way that you can to work through
it and overcome it because a lot of people can overcome it.
Heidi Loveridge (1:04:00)
Yeah. I do, I am on medication as well for my doctor. Yes.
Bill Gasiamis (1:04:05)
antidepressants.
and have they been helpful for you?
Heidi Loveridge (1:04:11)
I don’t think so. Because if they were helpful, I’d be happy by now when I…
Bill Gasiamis (1:04:12)
Okay.
huh,
Heidi Loveridge (1:04:20)
Yes, I actually just offed my dose
this week.
Bill Gasiamis (1:04:23)
You’re off them.
Heidi Loveridge (1:04:24)
I upped it.
Bill Gasiamis (1:04:26)
you upped it. Okay.
Heidi Loveridge (1:04:27)
Yeah.
But actually, I did hear somewhere that sertraline, which is what I’m on, it actually increases neuroplasticity in our brain.
Bill Gasiamis (1:04:28)
And what’s the thing?
It does.
Heidi Loveridge (1:04:36)
Yes, actually my therapist told me that people who are neurodivergent also are more neuroplastic.
Bill Gasiamis (1:04:42)
I like.
Heidi Loveridge (1:04:43)
Mm-hmm.
Bill Gasiamis (1:04:44)
Okay. Did you get any more information on that? How are they more neuroplastic? Why?
Heidi Loveridge (1:04:49)
I should do some research on that because I just took her word for it.
Bill Gasiamis (1:04:52)
Yeah.
Yeah. And do you, are you neurodivergent?
Heidi Loveridge (1:04:57)
A little bit, There’s actually, there’s one comment, a doctor said, put a comment in my file that I said something that made him think that I might be slightly neurodivergent. I wonder what I said.
Bill Gasiamis (1:05:06)
huh.
Yeah. And other than neurodivergent, there was no diagnosis. They didn’t say on the spectrum of autism or anything like that. Yeah. Okay. One comment, one comment made you stand out. my gosh. Heidi might be neurodivergent as well. Well, I know a lot of people who in later life, like I’m in my fifties, I’ll be 50.
Heidi Loveridge (1:05:11)
No. No. Nothing, yeah.
But I’m interested, I wonder what I said.
Yeah.
Thanks.
Bill Gasiamis (1:05:35)
to in a few months
who have kind of said to me, know that all the information out about ADHD now or all these things I’ve been reading in a cheese that sounds like me or gosh, that sounds like me. My whole generation went through teenage years and all that kind of stuff being labeled as cheeky as this as that as whatever. ⁓ We didn’t have diagnosis. Yeah, we didn’t have diagnosis. We just had labels. ⁓
Heidi Loveridge (1:05:44)
Yeah. Yeah.
Yeah, like troublemaker and stuff. Yeah.
Bye.
Bill Gasiamis (1:06:05)
Yeah,
he’s a good kid, but card he could be crazy or, you know, he’s a good kid, but he’ll never see, he never settles down. He’s always off with the fairies, you know, like you hear all these things. And now in our fifties, everyone’s going, ⁓ yeah, that sounds like me. It’s kind of normalized how they feel about themselves that this is not a label. It’s just the way my brain is different. It works in a different way. And, ⁓ I got to my fifties. I was able to find a way to manage.
Heidi Loveridge (1:06:11)
Yeah.
Yeah.
Yeah.
Bill Gasiamis (1:06:32)
I live a really relatively normal life. was able to overcome challenges. I work, I paid a mortgage off, I raised kids, but I think kind of getting there without a diagnosis kind of made it. What’s the word? I don’t know. I’m speaking for myself. Okay. Once again, for those people, sounds like it.
Heidi Loveridge (1:06:37)
Yeah.
You had to go the long way.
Bill Gasiamis (1:06:51)
It feels like that. Yeah. You kind of become resilient in finding solutions. Like you have to manage all of these things that you find solutions and you kind of get somewhere anyway. And while I like people having more information, I love it that people get diagnosis now you can, and you can go get tested, et cetera. I think while I think that’s great, I think the part that’s lacking is that now that you have this diagnosis, all it means is
Heidi Loveridge (1:07:02)
Yeah.
Mm-hmm.
Yeah.
Bill Gasiamis (1:07:19)
You just have to find a different pathway to get to your outcome because your additional pathway going to school, sitting down in the chair for eight hours a day, that’s not the pathway for you.
Heidi Loveridge (1:07:22)
Exactly. Yeah.
That doesn’t work for you anymore, Or it never worked for you, and it was never going to work. You weren’t doing it wrong. It just wasn’t going to work for you.
Bill Gasiamis (1:07:34)
Yeah.
Yeah, it was just that you were put into the wrong place and things, ⁓ and nobody knew, nobody knew any better. But now that they know, and now that you know, you know, you can manage, you can find the way around it. And that’s what a lot of, ⁓ 50 year olds kind of seem to be telling me these days. They all seem to be going, ⁓ my gosh, this fits, this fits, this fits. I’m like that. And I was like, dude, I knew you were like that because I’ve always known you to be this way. ⁓
Heidi Loveridge (1:07:41)
Yeah.
Mm.
Mm-hmm. Yeah, exactly.
Bill Gasiamis (1:08:06)
But it’s
what made me love you. Like it’s why I hung out with you. I have a friend of mine who was, who was so ADHD that he was only fun to be around because we were always doing something fun and wild and crazy that I wouldn’t do on my own that I wasn’t allowed to do as a kid. But when I was with this particular person, boy, life was interesting, but it did interfere with his life later. It became
Heidi Loveridge (1:08:10)
Mmm.
Yeah.
Mm-hmm.
Bill Gasiamis (1:08:34)
a real challenge, he had to overcome it. And now in his 50s, he’s starting to find really a
way around all of the challenges and kind of finding good solutions that he’s implemented on his own to not be impacted by this particular.
Heidi Loveridge (1:08:45)
Yeah.
Yes. Yeah.
Bill Gasiamis (1:08:55)
⁓ thing that, that he grew up with that his parents were from Greece. They came
to Australia in the sixties. They weren’t educated. So they couldn’t help him other than try and rein him in when he was on his, ⁓ when he was, you know, just doing what he was doing though. They couldn’t do anything else, but they did their best. And I think they did a great job personally.
Heidi Loveridge (1:09:03)
Yes.
Yeah.
Yeah.
Bill Gasiamis (1:09:19)
They were very mild, mannered and calm about his behavior.
Heidi Loveridge (1:09:22)
Yes, this probably helped.
Bill Gasiamis (1:09:24)
Yeah. And they never not loved him. They always, always still loved him and always, you know, did the best they could, but they just didn’t have the type of information that we have these days.
Heidi Loveridge (1:09:36)
Yes,
all we can do is the best that we can with the knowledge we have at the time.
Bill Gasiamis (1:09:41)
That’s such a wise saying. Indeed. I agree with that. It’s a good thing, especially to remember when you’re being hard on your parents has given them bit of a break and allow them the grace to be imperfect.
Heidi Loveridge (1:09:52)
Mm-hmm.
Exactly.
Bill Gasiamis (1:10:03)
I wonder Heidi, as we wrap up, if you could share one lesson from your journey with someone that was recently diagnosed, what might it be?
Heidi Loveridge (1:10:05)
Yeah.
I want to say time. But I hated hearing that.
Yeah, you need to hone in your patience. And be willing to put in some effort. It’s going to be hard, but you can do it. You can do hard things. I have a sticker on the mirror and my bedroom now that says, you can do hard things. Hard shit, it says actually.
Bill Gasiamis (1:10:28)
That’s beautiful.
That’s beautiful. And on that note, thank you so much for reaching out and joining me on the podcast.
Heidi Loveridge (1:10:38)
So far, this is great. Thank you.
Bill Gasiamis (1:10:41)
Well, thanks so much for listening to this episode. If Heidi’s story resonated with you, I’d really appreciate your support in helping this podcast reach more people who need purchasing the book.
by going to recoveryafterstroke.com/book.
Leaving a five-star review on iTunes or Spotify, supporting the podcast on Patreon, or simply commenting on the YouTube channel and sharing your thoughts.
Every one of those actions helps more stroke survivors find these conversations and feel less alone. And as always, remember you can do hard things.
The post Life After Right MCA Stroke: Why You May Not Feel Like Yourself After Stroke appeared first on Recovery After Stroke.
Long-Term Effects of Brainstem Stroke: The Hidden Deficits No One Talks AboutTy Hawkins was taking engagement photos with his wife the same day he was admitted to the ICU.
That sentence alone captures something essential about brainstem stroke, and about the particular cruelty of its long-term effects. On the outside, Ty looked like a young man in love, celebrating a milestone. On the inside, his vision was blurring, his balance was failing, and one side of his face had begun to droop. By nightfall, he was in the hospital being told they had found a mass on his brain.
That was June 2019. Ty was in his mid-twenties, working in sales at Verizon, playing competitive basketball, and building a life with the woman he was about to marry. The stroke caused by a bleed from a cavernous malformation in his brainstem carried a 25% survival rate. Of those who survived, only 10% made a significant recovery.
Ty is now approaching year seven. He returned to work. He speaks publicly. He shares his story with a global audience that finds him through social media and reaches out to tell him he helped them keep going.
And every single day, he still wakes up managing deficits that most people around him cannot see.
What the Brainstem Controls — And Why Its Damage LingersThe brainstem is not a dramatic structure in the way the cortex is. It doesn’t govern language, memory, or personality in ways that are immediately visible to an observer. What it governs is more fundamental: breathing, heart rate, digestion, balance, coordination, and the relay of sensory signals between the brain and the body.
When a bleed occurs in the brainstem, as it did for Ty through a cavernous malformation, a cluster of abnormally formed blood vessels, the damage disrupts those foundational systems. The effects can be wide-ranging, deeply personal, and stubbornly persistent. They can also be almost entirely invisible to anyone who isn’t living inside that body.
For Ty, the long-term effects of his brainstem stroke include ataxia, double vision, gastroparesis, CRPS, and left-sided numbness and weakness. None of these are visible when he walks into a room. All of them shape his daily experience in ways that most people, including many in the medical system, never fully appreciate.
Gastroparesis After Stroke: The Deficit Nobody MentionsOf all the long-term effects Ty lives with, gastroparesis is perhaps the least discussed in stroke recovery conversations and one of the most disruptive to daily life.
Gastroparesis is a condition in which the stomach empties too slowly or incompletely, caused by disrupted communication between the brain and the vagus nerve. For Ty, this means the digestive signals that most people take for granted, hunger, fullness, and discomfort, are unreliable. He can eat three bites and feel as though he has finished a six-course meal. He can go hours without a hunger signal and needs to eat by clock rather than by sensation. When his nervous system is overwhelmed, his digestive system slows or stalls entirely.
Gastroparesis after stroke is not a fringe experience. The brainstem governs the vagus nerve, which in turn governs gut motility. A brainstem stroke can interrupt that pathway in ways that create persistent digestive dysfunction, yet it rarely features in the standard conversations about stroke recovery. Survivors can spend years not understanding why their digestion is erratic, not connecting it back to the stroke, and not receiving targeted support.
Ty found that movement and routine helped regulate his system. A morning sauna, regular exercise, and starting the day with warm tea and light fruit rather than a heavy meal gave his digestive system conditions in which it could function more predictably. These are not medical solutions, they are adaptive strategies built through seven years of learning his own body.
CRPS and Ataxia: When the Nervous System Won’t Stand Down“My daily pain level is a four or five. Someone not used to chronic pain would call it an eight or a nine.” — Ty Hawkins
Complex Regional Pain Syndrome (CRPS) was misdiagnosed in Ty for several years as neuropathy. It presents as the brain becoming stuck in a fight-or-flight pain loop, sending persistent, amplified pain signals in response to stimuli that should not be painful at all. For Ty, this means clothing fabric can register as pain. Cold bed sheets can spike his discomfort through the roof. Water on his skin can hurt.
Ataxia compounds this by disrupting muscle coordination when his nervous system becomes overwhelmed. His gait changes. His shoulder shakes when lifting overhead. Coordination that was once automatic, honed through years of competitive basketball, becomes unreliable when fatigue, overstimulation, or stress tips his nervous system past a threshold.
Both conditions are neurological in origin. Both are invisible to the outside observer. Both require constant, conscious management.
The Athletic Mindset as Recovery InfrastructureWhat gave Ty the internal architecture to manage all of this? He credits his coaches.
Years of athletic training being pushed past comfort, being held to a standard of effort regardless of natural talent, learning that showing up and doing the work was non-negotiable, built in Ty a psychological framework that translated directly into rehabilitation. In the inpatient facility, he was wheeling himself to therapy sessions before the nurses came to collect him. After the first week, they stopped coming. They knew he would already be there.
As the doctors noted during his rehabilitation: he was recovering faster than expected, and they attributed it directly to his athletic background. Not his talent. His work ethic.
The Emotional Cost of Looking FinePerhaps the most underappreciated long-term effect of Ty’s brainstem stroke is the one least visible of all: the emotional toll of presenting as healthy while carrying a daily invisible burden.
For years, Ty’s type-A, athletic identity kept him moving forward, but it also kept him from fully acknowledging what he was carrying. It took until years three or four before he genuinely engaged with psychotherapy. Once he did, the progress he experienced was significant. He now starts every Monday with a therapy session.
The shift that mattered most was learning to honour how he actually felt rather than how he wanted to feel. For male survivors in particular, the cultural conditioning to tough it out is deeply ingrained and actively harmful in the context of long-term stroke recovery. Emotional suppression does not make the load lighter. It makes it invisible to everyone, including the person carrying it.
Recovery Has No Expiry DateTy’s most direct message to survivors is straightforward: don’t limit your recovery to the first year. The brain does not set a deadline on neuroplasticity. He is approaching year seven and still noticing improvements.
The triumph of this story is not that Ty is symptom-free. The triumph is that he has built a life of genuine meaning and contribution around an ongoing physical reality without pretending that reality doesn’t exist. He’s reached people on every continent with a message that is simple, honest, and badly needed:
You can survive the statistics. You can carry the hidden weight. And you can keep getting better years after everyone else assumes the story is over.
If you are navigating your own stroke recovery early or years in, Bill’s book is a practical and honest companion for the journey: recoveryafterstroke.com/book
And if the Recovery After Stroke community has been part of your path, consider supporting the show on Patreon: patreon.com/recoveryafterstroke
This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
Ty Hawkins: Six Years After a Brainstem Stroke, Still Fighting the Battles You Can’t SeeHe survived a 25% chance brainstem stroke. Nearly 7 years on, Ty Hawkins reveals the hidden deficits that never made the headlines until now.
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Highlights:
00:00 Introduction: Long-Term Effects of Brainstem Stroke
05:54 The Day of the Stroke
11:35 Hospital Experience and Diagnosis
15:44 Mindset and Recovery
21:46 Therapy and Rehabilitation
24:25 Long-Term Effects of Brainstem Stroke
32:58 The Importance of Exercise in Recovery
38:21 Living with CRPS: A Daily Challenge
50:29 Emotional Resilience and Mental Health
01:01:28 Lessons Learned: Recovery Insights for Stroke Survivors
Transcript:
Introduction: Long-Term Effects of Brainstem Stroke
Ty Hawkins (00:00)
as I’m sleep. have a dream and It’s just I’m in a dark place and I just hear a voice and it says do you trust me and? I said well Absolutely, it said okay. Well, we have to go and I immediately wake up and I tap my wife and I say hey we should go to the hospital now and Then I go to the hospital so by day I’m taking engagement photos and by night. I’m in ICU
immediately taken to the
for a CAT scan and chest x-rays.
Bill Gasiamis (00:30)
Before we get into today’s conversation, I wanna take a moment to acknowledge something that I think a lot of people in this community quietly live with. The feeling that your
looks finished to everyone else, but you know the real story. You’re still managing things every single day that nobody around you can see. If that’s you, this episode is going to hit home. My guest today is Ty Hawkins. Ty had a brainstem stroke in June, 2019.
caused by a cavernous malformation, a bleed that carries a 25 % survival rate. He made it, he went back to work, he plays basketball, he looks great, and he is still nearly seven years later managing gastroparesis, CRPS, ataxia, and daily chronic pain that he rates at four or five, which he says most people would call an eight or nine. This is a triumphant story, not because every deficit is gone,
but because Ty built a life of purpose and meaning around the ones that stayed. We’ll get into all of that in just a moment. Now turn2.ai is your AI health sidekick that keeps you up to date with personalized stroke recovery information each week. There are literally over 800 new things published every week on stroke. Turn2 searches everything new from the past week and sends you what’s most relevant, research, patient discussions.
expert comments, trials and events.
You can try for free and get 10 % off by scanning the QR code on the screen or clicking the link in the description below. And if you haven’t picked up a copy of my book yet, it’s available now at recoveryafterstroke.com/book.
And now let’s get into the conversation Ty.
Bill Gasiamis (02:13)
Ty Hawkins, welcome to the podcast.
Ty Hawkins (02:15)
Thank you for having me.
Bill Gasiamis (02:17)
Thank you for being here. This is the second time we’ve tried to connect and have you on the show. Last time, if I recall correctly, you won an award or you graduated from somewhere.
Ty Hawkins (02:30)
I believe I had one either had a speaking engagement or I won an award where I wasn’t able to attend our our interview
Bill Gasiamis (02:42)
Yeah, what was the award? Do you recall?
Ty Hawkins (02:47)
That was a few years back. I don’t really recall offhand. I know there was a lot going on with me mentally at that time too. So I don’t really recall what it was. drawing a blank right now on that one.
Bill Gasiamis (03:01)
Yeah, fair enough. I do remember it was at least 12, maybe 18 months ago that we tried to connect. But that’s cool that you’re here now, man. Thanks for reaching out again. I was just going to ask like, what was your life like before the stroke? What were you up to? What was your regular day like?
Ty Hawkins (03:21)
So for me what I was up to both prior to my stroke I was really locked in and focused on my career. So I graduated college or university in 2015 and I was well into my career with Verizon here in the States and So my my day-to-day look pretty much like work and I was spending a lot of time just
playing basketball because I played in college. So I was trying to, you know, ⁓ still keep up with the athletic side of me while getting my career off the ground.
Bill Gasiamis (04:01)
What kind of work did you do for Verizon?
Ty Hawkins (04:05)
So his Verizon, was at that time while I’m still in sales currently, but at that time I had just started my sales role and immediate like right prior to I was a sales manager, prior immediately prior to my stroke.
Bill Gasiamis (04:21)
huh. What was it like the day of the stroke? Or actually just before you answer that question, was there any signs that you were unwell, that there was potentially something looming, you know, anything give it away before the stroke that now you think that was probably a sign?
Ty Hawkins (04:40)
Absolutely. So looking back and now having the education and the awareness of stroke, know I remember just having numbness in my left foot ⁓ that started and felt like a little pebble in my left shoe. And I would take my shoe off and shake it out and nothing came out. And I had no idea that it was actually like the feeling in my foot.
and it started to move up my leg and eventually ⁓ from my foot up to my shin, actually I felt pins and needles ⁓ and my foot was actually numb and I experienced a lot of headaches ⁓ immediately prior to the stroke. So for weeks I was having, I would have little headaches that I just thought was stress related from work.
Bill Gasiamis (05:38)
to the, what you just explained about your foot. That’s exactly what happened to me. My left, my big left toe went numb and then my entire left leg went numb, but it took me a week to get to the hospital. By then my entire left side had gone numb. So how long was it before you decided to do something about your numb foot and shin?
The Day of the StrokeTy Hawkins (05:54)
Mm-hmm.
So ⁓ it may have been a few weeks, honestly. So I just pushed through and thought it was because of work and just stress related to work. it took about a week or so till it actually moved, till actually my leg went numb. And I remember one day vividly my wife tickled my foot, my feet, I was ticklish. And she went to tickle my, she tickled,
tickle my feet and I jumped when she tickled the right foot but I didn’t budge at all when she tickled the left foot and so that was a sign I still pushed through and I went to play basketball and I took a shot that it was routine for me and I missed very bad and there were guys at the gym I thought I had vertigo maybe some something in her ear and the guys at the gym like hey man
Something seems off with you. I want you to get checked out before we play again in a few weeks. And so I decided to make an appointment to see my neurologist or not neurologist, my primary care physician. And I went through a routine checkup and everything kind of cleared. And so I had a decision to make that I want to tell her what was going on with my body though my vitals were good.
And so I told her and she ran some tests like poked poked my foot and just was touching my leg with different ⁓ textures and eyes open eyes closed and I can only I only knew that she was touching me if I could see her. So when I closed my eyes and she touched me, I didn’t I had no idea. And so she sent me to for MRI and before or not for MRI, she sent me to a neurologist.
And the neurologist scheduled me for MRI for the next week and I was in the hospital the very next day.
Bill Gasiamis (08:04)
Wow, man. You had a brainstem stroke from a cavernous malformation. I had a stroke caused by a arteriovenous malformation, which is very similar kind of issue with the way that the blood vessels have formed. My one popped and then started to bleed like really, really slowly. It sounds like yours did something similar. So
Ty Hawkins (08:17)
AVM, correct?
Bill Gasiamis (08:33)
you’re going through this for a couple of weeks, you go and see the neurologist and the next day you’re in hospital, how dramatically did it escalate between the neurologist appointment and the next day?
Ty Hawkins (08:44)
⁓ So it escalated very very fast so the next day I woke up and it was that my engagement photo shoot so what a day right and
Bill Gasiamis (08:57)
Wow.
Ty Hawkins (08:58)
I’ll go to the bank I take a five-minute drive from my house to the bank and what happened on my way back is just off I couldn’t explain what was going on I just had an all feeling so I told my wife I wasn’t able to drive to any of the other appointments that I had that day prior to our shoot and on the way to our photo shoot so things progress
by minute by minute hour by hour So I started the day she noticed a facial droop and we had no ideas of the sign She looked at me. She said are you okay? Cuz your face and I looked in the mirror and it was it was slight but So didn’t really think much of it and I was excited for our shoot So I just pushed through and on our way the photo shoot location was at our University where we met and that’s about
40 minute drive from our house so as we’re progressing through the drive my vision starts to get blurry and I can’t I can barely make out the vehicles that are around us I can only make out the color and the color of the license plate so I know that something’s there but it’s so blurry that I can’t even couldn’t tell you what kind of what kind of vehicle it was we actually get to the location for the shoot
I get out the car and I can barely stand upright so ⁓ I Remembered trying to move and I was just so all balance and and dizzy and We did the shoot somehow some some way I made it through the shoot and I remember changing my clothes and ⁓ As I look back now I went into the bathroom to change my clothes and I was alone and I could I kept
Tilted to the right while was trying to put my clothes on and my shoes and as I think back I’m so lucky I’ll say I’m so blessed to have made it out of that bathroom you know I’m back to the group and We finished the shoot and I go we drop home So my wife says do you want to go to the hospital or I said no, I won’t go home and I just want to rest ⁓ so
She goes and picks us up some food. I’m at home. I remember taking maybe two, three bites of the food and just feeling so nauseous. Like, man, I can’t even, I’m not even hungry anymore. And so I say, I’m gonna go and take a nap. If I wake up and I feel the same as I do now, we can go to the hospital. And this is where the story really gets.
Hospital Experience and Diagnosis
It’s going because in my dream or
as I’m sleep. have a dream and It’s just I’m in a dark place and I just hear a voice and it says do you trust me and? I said well Absolutely, it said okay. Well, we have to go and I immediately wake up and I tap my wife and I say hey we should go to the hospital now and Then I go to the hospital so by day I’m taking engagement photos and by night. I’m in ICU
immediately taken to the back with them saying whatever the stroke they felt that the stroke code was or what they call it in the hospital. And I was immediately taken back for a CAT scan and chest x-rays.
Bill Gasiamis (12:31)
Wow, man, that is a crazy story. ⁓ Firstly, how did the photos turn out?
Ty Hawkins (12:39)
photos they turned out good I would say in spite of the circumstances but if you look at the photos in as you know as well as we understand stroke you can look at my face and see the the facial droop in my top lip so as I’m trying to smile you my smile wasn’t wasn’t aligned it was it droops slightly so the right side of my face was impacted so I had a juke going to the right
But I would say they turned out well despite the circumstances for what the circumstances were
Bill Gasiamis (13:17)
All things considered. Yeah. That is unbelievable. This dream like who now this is going to get trippy. I know like who was that in your dream that gave you that information.
Ty Hawkins (13:30)
So for me, at that time, I mean even now, I say it was God for me, speaking to me and letting me know that I needed to get to the hospital. And then at the hospital, when the doctor came in to give the news that they found what they thought was a mass on my brain, I remember
hearing seeing a figure in the corner of my room and hearing that same voice say remember that I’m going to protect you and so from there you know I just tied it that that was God with me through through the stroke
Bill Gasiamis (14:12)
I love it that that was God with you, man. Why not? That is amazing. And that the person or that spirit or the being was in the room with you as well. Reassuring you. Wow.
Ty Hawkins (14:22)
Yes.
Yeah, it was was crazy. remember so it’s time almost simultaneous the the doctor was coming in to give the news and he was The door was off-center to my left. So I see he he came in and The figure was in the corner to the right So as he comes in my wife is looking like he has bad he looks like he has a face of bad news so he mentions that there’s
They found a mess and Simultaneously, heard me remember I’m going to protect you so as the doctor leaves I look at my wife and I say I don’t know how to explain this but I’m going to be okay and You know as destroyed as she was You know, that’s what I could say to her I couldn’t really explain it in that moment But I told her and ⁓ I knew that I was going to be fine
Bill Gasiamis (15:25)
Wow, man. So I had some moments when they gave me the news. I was at the hospital alone. It was probably 11 p.m. at night. It was a Saturday night. No, it was a Friday night. I’d sent my wife and the kids home because I didn’t want them to wait for hours and hours to find out the news, go home and rest and look after the kids. They were young teenagers, both of them at the time. And I was…
Mindset and RecoveryI got the news it was there’s a mass on your brain or a shadow on your brain that appeared in the scan. It could be a brain bleed. It could be a tumor and that tumor could be benign. It could be cancerous. That’s the way they broke the news. And I remember being kind of like, ⁓ okay, whatever. And I was so.
I was so nonchalant about it. He says to me, do you have any questions? And I said, no, not at this stage. And I left it at that. And I basically just took the news, went to bed, had a bit of a sleep because the next morning I was going to wake my wife, her to come to hospital. I had to tell her the news and I did that. She came. And after I told her the look on her face was the first time that I kind of got a little bit scared. And then I had to ring.
my client and tell my client I’m not coming into work today ⁓ because I’m in hospital and there’s something wrong with my brain I don’t know what it is and I start crying.
But even through all of the drama, the three brain bleeds over two and a half years, brain surgery, walking, even through all of that and all the problems that it caused us, me, my family, my work, it never crossed my mind that I wouldn’t get through this or wouldn’t get over it or beyond it. Now I am still dealing with it. I still have a podcast that I have to do.
because if I don’t do, I don’t get my therapy every week. But do you know, I’m moving through it, beyond it, overcoming it. I never believed for one moment that it would be the thing that stops me, defines me, even though I’ve had dark days, dark weeks, dark months, I always expected that it would shift and something would come out from the other side. I don’t know whether…
⁓ I would ⁓ allocate that to God or something else, but I truly deeply believe that like it was within me and maybe it was kind of God like type of experience, but I love how you’re in technically like the worst day of your life health wise, it could go one way or another and you’re just thinking I’m going to tell my wife everything is going to be fine and ⁓
We’ll just get through this. I think that is something that sort of set the foundation for how you were going to approach the whole entire recovery after that, this experience that you had.
Ty Hawkins (18:40)
Yes, I think that definitely set the tone. Having that experience and not… I never felt in danger. I knew that the journey, this process, wasn’t going to be easy. But I never felt that I was in danger. That my life was in jeopardy.
the diagnosis and the statistics that show if you have a bleed in your brain stem that the percentage of survival is 25. So that’s one in four people that based on statistics that experience what I do one in four people survive. And then of those that do survive, they say that 10 % just make a significant recovery. And I never felt.
that I was battling against those statistics each day that from the moment I got the news it was a cool calm collected call my mom, my brother and that’s what my wife did and you know I just tried to stay as composed as possible ⁓ because I never felt in danger and I didn’t want them to worry too much ⁓ you know I knew it was going to be be difficult because I went from
One day running up and down the basketball court to being bedridden and barely could function. I couldn’t write. I lost the perception on size of writing. I couldn’t walk. ⁓ I forgot how to walk, though my body forgot how to walk. I could mentally think, hey, I want to take these steps and get up out of bed, but I needed help. So I spent a week in the hospital.
I spent three weeks in an inpatient rehab facility. So as I mentioned It was the day of our engagement shoot so our wedding was set for three months later And that’s all I could really think about was I have to get ready for this wedding I have to get ready for our wedding. I have to get ready for our wedding. So every day I woke up ⁓ You know my athletic mind is up for the challenge ⁓
You know, God told me that I was going to be okay. And I knew that I had to show up and do the work when I was taught on the basketball court and just in life, you just have you show up and you, you, you battle back against adversity. And I decided that yes, like you, didn’t want this to define me. I didn’t feel that this was going to be the end of, of my life. ⁓ I knew that it was going to be a chapter that I would never forget, but
I knew that I was up for the challenge.
Therapy and RehabilitationBill Gasiamis (21:40)
I love that athletic mindset, right? Your coach probably drilled you for years, know, like get up, get going, keep going, keep moving, push through, overcome, ⁓ try harder, you know, be more strategic, whatever, like the whole athletic mindset applied to stroke recovery. I reckon it’s such a massive, ⁓ like it’s such a massive benefit to have that going into a diversity, like recovering from a significant health.
⁓ situation because I know that there are players on the field who are not the best players but they are the most impactful because they do the most work and they get given labels like he’s a natural or ⁓ he’s gifted or stuff like that and it’s like dude I couldn’t
I couldn’t walk straight when I was a young kid. The only reason why I appear gifted or natural is because I work all day every day. You classic Michael Jordan ⁓ kind of approach where Jordan talks about being ⁓ always training, always shooting hoops, always ⁓ on the basketball court more than anybody, even though he was
Ty Hawkins (22:52)
you
Bill Gasiamis (23:00)
Appearing to be kind of naturally gifted because of his body shape because of his athleticism because of his height But it meant nothing if he didn’t do the work every single day
Ty Hawkins (23:12)
Yes, yes, and even you know from a spiritual perspective There’s the saying that faith without works is is dead And so for me I had the faith and I knew that I needed that there was work work required of me I think even after ⁓ my experience of so as I mentioned I spent three weeks in the inpatient facility once I understood the magnitude and how much my
Long-Term Effects of Brainstem Strokemindset really helped me through. I reached out to a lot of my coaches and you don’t understand when you’re young how they’re, man they’re pushing me so hard, they’re pushing me so hard and I’m like well I’m glad that they pushed me this hard because because of that I felt prepared for the adversity that I faced in June of 2019 so you know I remember reaching out and just saying thank you for being
as hard on me as you were because it helped me through this. Who would have known that years later that discipline that you were, that I thought as a young adult would, you know, thinking that you’re just being tough on me and it’s really building characters, building a mindset. And I grew to appreciate that as I started to reflect back on, you know, on my journey because a lot of the doctors said,
You’re I feel that you’re recovering so fast because you were an athlete in I wasn’t just an athlete I worked hard my I took pride in like you said that Michael being in the gym and Just really working hard. It was one thing I said hey You might be better than me, but it’s one thing that you’re not gonna you might have more talent than me But you’re not going to outwork me and you know, that was my mindset
Bill Gasiamis (25:03)
Hmm.
Ty Hawkins (25:06)
with recovery, it’s every day. Once I understood what therapies that I would have to do. ⁓ So I remember in the inpatient facility, my first week there, the nurses would come clip my schedule to my wheelchair and they would come get me for therapy. After the first week, they would come clip my schedule to the wheelchair and they’d never, they wouldn’t come to get me because they knew that
I was going to be wheeling myself down the hallway to get to whatever session, OT, occupational therapy, physical therapy, or speech therapy that I knew what time I needed to be there and I was going to be there because I was determined to get better.
Bill Gasiamis (25:52)
I to ask for permission to walk back to the therapy room ⁓ on my own because they were afraid I was going to fall and it was fair enough because my left side wasn’t really working well after about two and a half, three weeks I was on my feet but I still was quite unstable and they said, look, we’re not gonna let you walk alone. We’ll come, but we won’t help you like we have been helping you. We’ll just watch you walk. I was like, yes, do that.
I felt safe, but also I had the ability to just get myself there. They had handrails down the hallway and everything that I could hold onto. But of course I went near them, tried not to hold on, held on when I needed to. I did everything I could to be on my feet on my own so I can get the brain getting used to being on this weird left side of my body, which is numb, tingly.
and not receiving information that the foot was on the ground. Like the brain wasn’t being told your foot’s on the ground, man, you know, like step or tension muscle or do the stride or whatever. So I remember going through that and I remember complaining because I was spending too much time in my bed. And I was like, guys, like, what am I doing here? This is boring. And I need to get into a session. I need to do something. And they were, well,
You know, we have to have lunch and we have to have other things that we attend to after I write reports on you and all that kind of stuff. You can’t be eight hours a day just in the gym or in the therapy room or whatever. And I’m like, ⁓ okay. I didn’t realize there was other technical things that happened in the background that wasn’t that was related to me, but not the as part of the physical stuff. So in, so instead what I did is I
Ty Hawkins (27:38)
Thanks, Ted.
physical, yes.
Bill Gasiamis (27:49)
imagined myself exercising, I imagined myself walking, I imagined what it would look like when I was on my feet, etc. Because it rewires the same part of your brain as if you’re actually doing it. So I thought, right, if you’re not going to be with me, ⁓ taking me for the actual therapy, I’m going to imagine myself doing the therapy.
Ty Hawkins (28:11)
No, I was the same so For me, I didn’t so I couldn’t really Walk in the big the first the first week I spent a lot of a lot of the duration of my three weeks I spent in the in a wheelchair there, but I was able to in The first week I needed a lot of help moving from the bed to the wheelchair But after a while I could get myself out of bed
into the wheelchair, will to therapy. That’s why they didn’t come because I wasn’t necessarily walking. But when I did walk, I would have a walker and they would use, somebody would be with me. And I was the same way. I’m like, man, I’m in bed a lot. I’m only in therapy for an hour and a half each session. neural fatigue really,
could appreciate my breaks because I was so, that hour took a lot out of me. But as my body reacclimated to the workload that it was receiving, ⁓ I was able to stay awake a lot better and my mom would then take me outside to do extra things. We would play toss for my hand. ⁓ She would toss the tennis ball. It would help me walk outside a little bit.
Bill Gasiamis (29:11)
Yeah, same.
Ty Hawkins (29:37)
But just, you would help, RMOF would help as much as they could for me to get extra, ⁓ some extra time and extra movement in outside of just the hour and a half that I was in the therapy session.
Bill Gasiamis (29:52)
Yeah, I love that. My parents came along as well. said to my wife and everyone came past and I spent time outside with them, you know, having some time in the sun, a meal, a coffee, something like that. That was really helpful. I think you and I also both benefited from the fact that the bleeds, although really serious, were not catastrophic bleeds and we had a lot of time to react.
to our situation that we found ourselves in. I took seven days, you took weeks. And I think that was just pure, utter luck that the bleed was a little small enough to start impacting us in a very small way that we thought was not significant and not at risk of our health. And also we both benefit from looking like we haven’t had a stroke. No one can tell that you would have or I’ve had a stroke, but you are.
Ty Hawkins (30:23)
Please hit.
Yes.
Bill Gasiamis (30:47)
also still though like me living with deficits right and you’ve got a few of them let me just read out the list you’ve got left-sided numbness and tingling which i have and weakness which i have but you’ve also got ⁓ a taxia which you’ll tell me about in a minute double vision ⁓ you’re going to also tell me about gastroparesis and crps so for someone that is so upbeat
Ty Hawkins (30:51)
Yes.
Bill Gasiamis (31:16)
looks like you do ⁓ like you haven’t had a strike, etc. You are experiencing some ongoing deficits years out. So first, tell me a little bit about a taxia. What’s that?
Ty Hawkins (31:24)
Yes.
So ataxia is, impacts the muscle coordination. So when my nervous system gets overwhelmed, it almost scrambles my coordination. So sometimes it’ll impact my gait specifically. It really like impacts.
Again my left side so I was impacted in the brain stem right side of face left side of body So it impacts a lot of and I’m left side dominant. So as I’m trying to lift weights or play basketball ⁓ I’ll have a I’ll feel what someone miscoordinated and so my coordination isn’t ⁓ Isn’t smooth once I get overwhelmed or
My nervous system isn’t sending the signals properly then it impacts my running so then ⁓ doesn’t send the signals for all the muscles to fire in the proper chain and then it impacts Yeah, like my shoulder so we’re trying to like lift things overhead ⁓ then it’ll get shaky ⁓ But yeah, it’s pretty much just a lack of coordination for like to simplify things
The Importance of Exercise in RecoveryBill Gasiamis (32:52)
Okay, cool. Interesting. So I have a very minor version of that. My left side, probably not as coordinated as my right side anyway, because I’m right side dominant. But now my left side is just a little bit out, you know, and when I get tired, my balance goes off. And ⁓ I find myself leaning in one direction. I lean into the doorway, you know, when I’m really tired, getting out of bed in the morning, I need to make sure that my foot is on the ground so I don’t lose my balance.
that kind of stuff. So tell me about gastroparesis. That’s one I haven’t come across a lot.
Ty Hawkins (33:27)
So, ⁓ just from having the brain stem is in control ⁓ of a lot of your, not basic functions, but your essential functions. So breathing, heart rate, digestion. So what gastroparesis is, is there’s ⁓ a lack of communication between my brain and the vagus nerve.
which will then lead to my digestive system either pausing or moving slow, moving a lot more slowly. And so what that can lead to is a lot of stomach discomfort where I can have three bites of food and feel like I had a six or six course meal. ⁓ you know, and then when that system isn’t functioning properly, it leads to issues with like my skin and things like that. But
Gastroparesis from my understanding is just either like a slowdown or paralysis of your digestive system.
Bill Gasiamis (34:33)
I hear you. Unexpected, ⁓ unexpected side effect of a stroke, right? People hear stroke, they, they know it’s associated to the head, but gastrointestinal issues become a massive problem for some people after stroke because the two are linked. And, you know, you can heal your brain by healing your gut. And when I say heal your brain, you can improve how it functions by healing your gut. ⁓
And like if you stop eating the standard American diet, standard Australian diet, same thing. If you stop eating that, you improve the gut conditions and that improves your brain, but also your other organs. But here you’ve got like a neurological disconnect sometimes when you’re overwhelmed by the vagus nerve that stops the standard basic functioning of your gut digestion. Like I imagine
Ty Hawkins (35:29)
Yes.
Bill Gasiamis (35:31)
you have a meal and it takes longer to digest or and therefore it causes discomfort therefore you are you avoiding food because of that?
Ty Hawkins (35:41)
Some days some days ⁓ You know and that it this one really my wife it’s you need to have you need to eat you need to have your meals and Like I’m not really hungry. It’s ⁓ is a lot of times I’m confused because I have such a discomfort in my stomach that I don’t know if I’m full or if is discomfort from you know, just just everything neurologically
So I’ll have to try and guess like hey ⁓ Am I am I fool what did I eat yesterday? What did I have today already? So some days I found myself avoiding food Just because I think that if I do I’ll give my system time to either catch up or slow down ⁓ So simply put I do as I’m thinking about it. I do avoid foods at times
Bill Gasiamis (36:35)
Hmm. Yeah, it makes sense that you would. And I met a guy many years ago, we’re talking about maybe 10 years ago, who had a similar thing to you, but a little more dramatic in that he didn’t get hunger messages at all.
So he had to eat only when other people were eating as a reminder that it’s time to eat. if he didn’t do that, he wouldn’t ever get the message that you have to eat. You haven’t eaten for four days or five days.
Ty Hawkins (37:15)
I’ll get you know I think that sometimes that that may happen where I’m just not getting the signal and but I’m aware that hey I know I need to eat I’m aware that maybe it’s been a day or I have a workout coming up that I know I need to eat for and sometimes it can just be I can have a banana and It feels like I had a full a steak
dinner with potatoes and a vegetable and like wow just from a banana and a glass of water and then some days my appetite is normal where I think once I find you know my routine I found a routine of sitting in a sauna and working out and ⁓ eating regimen so in the morning I would have I’ll have a cup of warm tea
Living with CRPS: A Daily ChallengeAnd if I’m not overly hungry or have a gym session, I’ll just have some fruit like a fruit salad and I’ll feel light and my digestive system appreciates that. And then ⁓ my body responds well to the heat. So I’ll try to sit in the sauna or exercise to get myself to sweat. And that seems to help my systems kind of stay in syncing and rhythm.
So when I do that, my appetite is pretty normal, but when I find myself either overwhelmed, just neurologically or from the stresses of the day, then systems just start to go out of whack.
Bill Gasiamis (38:55)
I hear you. Exercise is so important. Like doesn’t matter what condition you’re in after stroke, you got to find a way to move your body as much as possible. And it causes so many positive cascades in your body that you, the bang for buck by exercising that your brain and body gets, it’s just unmeasurable. You cannot measure it. It’s so, so important. ⁓ And I love that you experienced direct benefits that you’re aware of.
when you exercise.
Ty Hawkins (39:27)
Yes, and that’s that’s the physical benefits and it’s also been very Beneficial mentally to mentally emotionally because a lot of people don’t Really when you hear a stroke and you think a recovery is just hey the physical recovery and hey you look great tie and like I Do look great, but internally some days I don’t and mentally some days I don’t but I know that
When I get, when I go to the gym and I work out, my mood is, it’s night and day when I don’t and when I do. And so I committed to, ⁓ working out as much, even if it’s just going outside for a in the neighborhood, getting outside, fresh air, it’s, have to move my body because if I don’t, that’s when things, you know, physically, mentally, and emotionally just start to break down.
Bill Gasiamis (40:23)
Yeah, we are meant to be moving. We’re moving creatures, you we’re meant to be moving, not sitting down too much, you know, driving desk work, all that kind of stuff is not normal. And we’re to be doing the, the physical version of getting somewhere like walking somewhere or, you know, running or, riding a bike. And if you can’t get on a bike, get a
one of those sit down three wheeler bikes. If you need a walker, walk with a walker. you know, whatever the situation is, find a way around it because exercising is hard, not exercising is hard, but like far harder.
Ty Hawkins (41:11)
Yes, yes, I just I made a video about that and I posted it Maybe two days ago about the gym and I woke up I was a little tired and I still got up and I went to the gym and after I said that same thing that Though I got the hard work done. The work was hard, but not moving is hard too. It may not
be immediately hard but it’s hard on your body not moving it adds up over time and ⁓ it’s what kept me I think not I think I know it’s what kept me the movement that I did early on paid off you know the doctors every session it was a lot of movement ⁓ and even now I’m just conscious of I may reach in the cabinet to get a cup but I’m
You know extending my arm more more than the one time to get the cup because that’s that’s therapy You know a lot of people have this ⁓ Miss conception that therapy is just that one hour in the therapy environment I try to find everything to be therapy Reaching for a cup reaching for a plate eating ⁓ You know the steps that I take around the house ⁓ even just dancing you know I’m not
I don’t have the, I have a little rhythm, but I’m not the best dancer, but music and moving my body just as I feel was something that was very, you know, beneficial for me. And it took me back to think when we were children and we’re kids, we just have these, what we think as adults is random movements. We’re folding ourselves like pretzels and spinning in circles. And it’s like, hey, this is what,
body is meant to be freely moving and we kind of lose track of that once we get to work or school sit at a desk for eight hours sit in a vehicle for long long drives and you know so on and so forth then we forget that we take for granted you know moving the ability to move our bodies until you know our bodies show us like hey you know this is the repercussions sometimes of you not moving your body.
Bill Gasiamis (43:34)
I love that. That’s a beautiful way to wrap that up is by saying the repercussions of not moving your body. It’s exactly what it is. They occur. Your hips get tight, your joints change in their ability to handle stress. Your bones get ⁓ thinner. You know, like so many things change in a negative way. You got to move even if you’re doing a real, you know, if you have a real challenging stroke experience and stroke.
⁓ deficits, you just got to move as much as you can. I love I love that ⁓ that approach. So you also are now dealing with CRPS. Now I’ve heard of that before, but describe that and what it’s like for you.
Ty Hawkins (44:18)
⁓ So it was misdiagnosed for some years as just neuropathy Which is the numbness and tingling on my left side? So if I if you were to look at me and draw a straight line down My right side feels What do you know the ⁓ normal person would feel you know? ⁓ It’s just freely flowing it feels normal right and my left side is just
You know, constant daily pain. You know, I feel something, ⁓ whether it’s in, you know, my leg, my arm, ⁓ you know, ⁓ it can be even having clothes on like this jacket right now is sending signals to my brain that ⁓ my arm is in pain and I’m not in pain clearly, but my brain is sending signals that me having this jacket on this material brushing up against my arm.
⁓ It’s painful water hitting my skin painful and my paint but That you know depending on the temperature you know if they’re cool at the bed sheets are cold of Pain level rises through the roof. ⁓ Yeah, it hurts But you know a lot of you know my mindset
Bill Gasiamis (45:23)
What about the big shades? What about big shades?
Yeah.
Ty Hawkins (45:44)
I don’t know. just I don’t complain about it and it’s like hey, you know, this is what I have to deal with So it’s constant like times. I feel it deep within my abdomen. I’ll feel it in my shoulder ⁓ You know, but CRPS it attacks ⁓ It’s essentially your brain just signaling that it is your brain stuck in a fight-or-flight cycle and it’s constantly Signaling that there’s some it’s a threat or some kind of pain is happening. So
From putting the sneaker on, it’s really been attacking, as of lately, my left ankle and my left foot. certain shoes, I can feel the pain deep in the bones in my foot. And then sometimes I’ll just feel like ⁓ a very deep ache in my shoulder. Or if the temperature gets cold enough, it’ll feel like somebody’s just grabbing, know, just has a hold on my rib cage.
and ⁓ you know so that’s Lightly to put CRPS what I think for me because I’m so used to the pain now is that my I always say daily I have a pain level of ⁓ four four to five where somebody that’s not used to chronic pain would say it’s eight or a nine and ⁓ Some days it’s frustrating
Some days it’s tiring, know, the sensation varies. It’s a numbness and tingling to a deep bone-jarring ache to almost a burning sensation at times, like depending on how much I’m moving. Like, so if I were to move with this jacket right now, as I move my arm, then there’s a deep pain in my tricep and then a very deep pain from the wrist to my fingertips.
And sometimes it’ll make me, like people, I’ll stand and I’ll just be squeezing my hands and people may think that I’m just, you know, just holding my hands, but I’m trying to let my body know that it’s okay. So I’m, you know, massaging or rubbing and ⁓ sometimes that helps or sometimes I just have to, you know, take a nap or close off other sensors to calm the brain down.
Bill Gasiamis (48:11)
my wife gets in trouble when she touches my left hand and she’s being gentle. If she’s being gentle, it’s like, dude, do not do that. She’s like, what do you mean? I’m being gentle. being rough. Don’t just be gentle with it. It hurts too much. It’s hurting now. And I’m in an enclosed room with no wind, no anything, but my left arm feels like it’s cold.
Ty Hawkins (48:16)
Mm-hmm.
Yeah.
Yeah.
Bill Gasiamis (48:38)
freezing while my right side is perfectly fine. You know, it’s a very mild, beautiful day outside. ⁓ the wind, when I go outside, if I’m wearing shorts and a t-shirt, the wind makes it hurt. And if I go to the beach, I have to wear, ⁓ what we call runners, trainers, joggers in the water because the little pebbles of sand, they feel like they’re, I just stepped on like a thousand pins.
Ty Hawkins (49:01)
Mm-hmm.
Bill Gasiamis (49:07)
or something, it’s just ridiculous. And then I sleep on my left side so that I can, like you do with your hand, you just squeeze it to just let it know like it’s okay. I sleep on my left side so the sheets don’t rub on my left side and I don’t get woken up by my sheets in the middle of the night. That’s how I kind of get around it. And I would say that my pain is around a three to a four, mostly.
Ty Hawkins (49:08)
you
Go.
Emotional Resilience and Mental Health
Bill Gasiamis (49:37)
kind of closer to a three. And when we go for a long walk, sometimes I’ll go for a long walk with my wife. If we’re visiting a city that we’ve never been to before, we love to see the city on foot the whole time. And we might be walking for four, five, six hours through the whole day after, you know, stopping for a coffee or something to eat or whatever. And my left side will be going, we are not doing this anymore. We’re completely done.
And I will have to have a conversation in my head with my left side and say, you’re coming along for the ride because you are overreacting. The right side is perfectly fine, which means that I haven’t done anything to hurt my body. haven’t over exerted ourselves. So you’re just overreacting. Be quiet and let’s get on with it. And believe it or not, man, that works. That quietens things down.
and then we just get on with the job of walking and seeing what we need to see.
Ty Hawkins (50:38)
Yes, yes, so the two things my wife, ⁓ so she likes to pick at my skin sometimes whether she sees a little pimple or something and I’m like, please not today. It’s days that I can tolerate it, but it’s days where, and in the beginning she didn’t understand. I didn’t either and I’m like, am I just overreacting? I’m like, no, this really hurts. And so as I started to understand my diagnosis, I explained it to her and she’s been.
Bill Gasiamis (50:49)
you
Ty Hawkins (51:07)
you know more aware and I’ll let her know if it’s like hey I’m fine today it’s good so you’re good to go and two I remember ⁓ she loves Disney so we went to Disney World for her birthday and that’s a lot of walking a lot of people so ⁓ and when I get overstimulated then sometimes I get a little irritable
So we’re walking and then, you know, I’m like, have to control my emotions. And then like you have a conversation with myself, like, Hey, my right side is not tired at all. My right side, we can go, we can go. And I’m like, Hey, we are, ⁓ we are okay. We’re, we are totally fine. This is a walk in the park. It’s a lot of people. Yes, but we are okay. We are safe and I wouldn’t do, I let my body know it’s nothing that I’m not putting you in any harm’s way. We’re just walking.
And we may have to slow the pace down a little bit. But then as I get back in rhythm, then I found myself, okay, we’re back. We’re back to speed. And I really think that, like you say, it’s you having that mindset and then telling yourself. So day two in Disney, day one, I didn’t know what to expect. But day two is like, hey, we’re having this pep talk before we even go outside. We’re not, we’re cooperating today. We’re going for a walk and it’s going to be a long day. So.
let’s go and as long as I have comfortable shoes and I think you know and I walk take breaks and able to sit down at times and you know my body then it’s like starts to trust in a lot that he’s going to take care of me so you know I have those conversations too in those same experiences.
Bill Gasiamis (52:58)
I relate to that so much, man. I get stuck. You know that feeling that you get in your hand? I get it in the ball of my left foot. It just becomes really, really tight. Like it feels, it doesn’t close up or anything, but it becomes really, really tight. And I can’t do anything to…
undo it, you know, so I’ve got to like sit there, massage it, massage it, just try and get the tendons and all of that stuff to move into work. That’s kind of like the only way that I can, that I can get through it, but I have to get regular massages. get a massage every once every about 10 days on my left side to loosen everything up. Otherwise it just puts my right side out as well, because then it starts impacting the other side of my body.
Ty Hawkins (53:35)
Mm-hmm.
Yeah,
because you start to overcompensate. Yeah, I do the same while I start going for those kind of weird here’s movement, movement recovery. So I do a lot of things to move my body stretch recovery and things like that. I actually have an appointment tomorrow afternoon to do that.
Bill Gasiamis (53:45)
Hmm.
Yeah, it’s so important. ⁓ Little, little things that kind of help you get through the next 10 days or two weeks or whatever it is, make such a difference if you can make it to a massage or if you can get your body look at that. It really helps. I find it helps me mentally more than anything because it eases all of those ⁓ discomforts and then my brain can just feel a little bit relaxed, you know, for a few days.
Ty Hawkins (54:20)
Yes.
Bill Gasiamis (54:28)
four days, 10 days, whatever it is, you whatever I get out of it. ⁓ And some days I feel like, man, need to see that. I need to see somebody right now. And I can’t get an appointment, but then by the time I get to the next day, it’s settled.
Ty Hawkins (54:38)
Mm-hmm.
Yes.
Bill Gasiamis (54:45)
So sometimes the cycle
requires me to just sort of stop, rest and not push through and just allow it to settle down.
Ty Hawkins (54:54)
No, yeah, I definitely think that allowing some days for the body to just rest and you know kind of catch up and recover does does the brain and body very well? ⁓ You know, I think I know for myself I was so Engulfed in I have to do something every day every day and keep my body moving that I wasn’t allowing it to rest in
I remember even on the basketball court, had a day off from practice. it’s, I have to allow my body time to rest and also my brain. you know, when we’re constantly thinking how can I improve, that’s actually putting, you know, some stress on our brain. ⁓ You know, that I started to learn to try to limit and just say, hey, I’m taking a day off. I don’t even want to.
think about what I may have to do. I just want to be here in the moment. I just want to enjoy a movie today or just spend time with the family and not think about anything recovery related.
Bill Gasiamis (56:00)
Yeah, it’s so important to you. You need time out, man. I hear you. ⁓ So you’re you’re being a few through a few tests and you’ve had some challenges to overcome. You’ve made it through your generally very positive, upbeat, glass half full kind of guy. But there probably was some dark times and difficult moments. How did you?
Like how did you deal with them? How do you kind of navigate when it gets really tough and challenging emotionally and mentally?
Ty Hawkins (56:34)
Before I used to just try to keep myself busy at first not realizing that that was almost making it worse in a sense because I was never dealing with the emotion of What I experienced I never allowed myself allowed myself to fully understand and feel it until recently and so recently I started Started talk therapy psychotherapy. ⁓ that’s been tremendous. And then also just really
taking time to reflect, I’ll do yoga, I’ll meditate, and you know, I’ll just get more vulnerable about my story I share with people, and I think that allows me to make it through just being honest with myself. I think that the type A athletic mind that I have, it was like, hey, you’re fine, you’re fine, you’re fine, you’re okay, and I never allowed myself to say, you’re not okay.
Once I did I think that was when I started to see more progress because I was honoring how I truly felt versus how I wanted to feel And it was hey some days I told my just recently maybe maybe two days ago. So my mom, know was it was a rough day and I was like hey this sucks mom and She was like, know, yes you you have to honor and it’s okay to say that that it
It does suck, but
know it’s you show gratitude that you’re still alive to experience have the experience of life But understand you know you have to honor how you feel in the moment, and it’s for me. I’m able to Shift quicker out of those moments now because it’s like hey I honor it this sucks may have a little cry then immediately after it better then have a little laugh and like hey, okay, you know so I just
Understand that there’s the range of emotions in its waves. So instead of going against the tide I just roll with the waves these days and you know is if I’m sad I just sit with it in the moment I talk to whoever I need to talk to and you know, let them know hey today is a bit harder of a day rather than you’re okay. You’re okay. You’re strong and I eliminated that ego and just honored how I feel because I think
especially as men, we’re we’re taught to, you know, just tough it out, get up and dust it off. And it’s like, hey, we’re human at the end of the day and we all have
So I think it’s better to honor your emotions. You know, we all have them for a reason, ⁓ you know, so it’s okay to cry. It’s okay to feel sad, you know, and work through that and you’ll eventually, hopefully we’ll see happiness, enjoy on the other side.
Bill Gasiamis (59:30)
Yeah, there is always a, what’s it like a reward on the other side of the hard time. Like you might not know when you’re going through the hard time, but it always leads to a positive outcome on the other side. You just got to give a time to get there. You know, got to just go through the ride and I’m similar to you talk therapy, man. Well, what a difference that’s made in my life. It just is so tremendous that you find somebody by the way, who you like to go and talk to.
⁓ So you might have to try a couple of different therapists, but like it is next level. You go there, you could talk about anything you want. Nobody’s judging you. You know, don’t have to share that with your loved ones. You can just be yourself and a different version of yourself in that room. that again, it just takes more weight off your shoulders. It creates more lightness. So I’m fully behind that.
Ty Hawkins (1:00:26)
Yes, yes, it’s been, it’s made a tremendous difference for me and I see, you know, this is, moving into year seven and early on I refused to go to therapy and, ⁓ you know, I think it wasn’t, it wasn’t until year three or four that I really decided to see, really dig in and understand therapy and realize that, it’s not just, I talk about the stroke less and less now.
and just about life. It helps me every Monday. It’s a great start to my week.
Bill Gasiamis (1:01:03)
Man amazing start to your week. Well done. I love it that it’s every Monday Your where are you doing this recording from now, where are you?
Lessons Learned: Recovery Insights for Stroke SurvivorsTy Hawkins (1:01:14)
Actually, I’m actually at work. ⁓ so I was able to return to work. ⁓ Fortunately, so I’m back with with Verizon ⁓ You know Emma in my sales role, so I was able to return to my career and In addition to my career being able to speak and do things like that. But currently I’m at work We’re getting ready to close up shop soon But they gave me the time because they they are very accommodating and understanding how important this is to me
and they support me here on my journey.
Bill Gasiamis (1:01:48)
Wow. This episode is not sponsored by Verizon, but thank you Verizon for allowing this to happen, man. Yeah. We love it. All right. I really appreciate that. ⁓ sounds like the stroke incident has shaped your life in a meaningful way.
Ty Hawkins (1:02:08)
Yes, yes it has. would say I was a very selfish person before and I don’t mean that like ⁓ in a bad context. was I just thought about myself and my goals and not how my life could impact others. And after the stroke, just being, you know, given this story and seeing how I had no idea that me sharing that I had a stroke and
My recovery would lead to a social media following and people looking to me for, you know, hope and inspiration that it was like, wow, you know, I’m actually am somebody that can impact. now it’s, you know, I live to help others. That’s why I continue to share almost seven years later and stay in touch with, with people and help try to provide resources that, you know,
You know, just be a resource for people that go through this or loved ones, you know, to anybody who goes through this or any adversity, just to show, my story is a testament that, you know, adversity does hit, but you can make it through. You know, it starts with a mindset and a great community. And, you know, I’m very proud of my story and, know, where I am now and the person that I have become despite, you know, that unfortunate circumstance and event.
Bill Gasiamis (1:03:37)
Yeah, I’m with you, man. I love what you said about like, how you you’re impacting, you know, you’re aware of how you can impact people, we impact people all the time, negative, positive, whatever it is all the time, you may as well focus the needle towards positive. If you become aware of it, you know, it’s way better. You get much more reward than just being about yourself. I mean, what a
Ty Hawkins (1:03:54)
Yes.
Bill Gasiamis (1:04:03)
And I was the same, like we all kind of start there. You know, it’s about how do I succeed? How do I make the next dollar? How do I do this? How do I do that? And then at some point you shift. And for me, the catalyst was the strokes for you. It seems like it was the same thing. And the reward that I never thought I would get from shifting the needle towards helping other people has been way, way greater than anything I ever ⁓ focused on before.
because it’s more of a global reward. It’s less of a focused, narrow reward, which is, know, money, car, house, you know, vacation. It’s now.
a feedback loop from other people and I get messages on the podcast every single day on YouTube, emails, people going this episode really has made a difference to my life or I loved hearing that story from that person, know, the comments make it so worth doing. It is amazing.
Ty Hawkins (1:05:03)
Yes,
yes, yeah, for me the message is hey, you know, your story helped me make it through or it helps me you serve as the inspiration and I don’t do it for that but it just helps. You know, it’s just good, a good feeling knowing that, you know, this isn’t in vain and that I’m able to impact people, especially in places that I’ve never been. I’ve received messages from places in the world that I haven’t traveled to yet and hope to one day.
And it’s like, know, my ⁓ story is helping people across the world. And I never imagined that I could have that impact, you know, before it was basketball and I need to, you know, attain this and career that. you know, now it’s, I hope to open, you know, an app or get an email like, hey, this has been so helpful.
You know, or hey, what advice can you offer? And it’s like, man, you know, I don’t, can offer you this advice. ⁓ you know, this is what helped me. ⁓ and it’s just a good feeling knowing that, you know, what the fight that I put up is, you know, then helping somebody, you know, pay it forward. ⁓ you know, whether it’s a stroke survivor directly, or it’s a caregiver, ⁓ or just someone who’s having, you know, a tough time, a tough goal at life in the moment to know that.
They draw some sort of inspiration to keep going. And that’s what it’s really about for me.
Bill Gasiamis (1:06:35)
I love it. Cross culture, ⁓ cross country, cross religion. Like it’s just human, right? Like it’s got nothing to do with any of that other stuff. It’s literally just got to do with human. ⁓ I know that you need to get back because I’ve seen you looking at your watch right now. So.
Ty Hawkins (1:06:48)
Right.
I
was just saying what time it is 8 15 here
Bill Gasiamis (1:06:57)
Yeah, we’ve been going for about an hour and a bit. we’ll wrap up. I’m near the end anyway, but I do want you to get back to work. I love the Verizon have done this by the way. So I really appreciate that. So I suppose the last question is about like, there are people listening right now, some of them will have just gone through stroke, literally the last week, weeks, months might be into their first year. What would be one lesson from your journey ⁓ that
you’d like to just share with the people who are listening who are a little bit earlier on in their recovery.
Ty Hawkins (1:07:31)
Early on, ⁓ I think that it’s really, it might be cliche, but it’s don’t compare your recovery to anyone else’s recovery. Your journey is your journey, especially in the stroke community. No one stroke, no two strokes are the same. So no two recoveries are the same. So, you know, and the biggest thing, the biggest misconception that I hear is that
only happens in the first year and I want to say that I’m approaching year seven and I still see improvements and strides in year seven so those are you know two of the biggest things focus on your journey and your mindset and don’t believe or limit yourself to think that recovery happens in just one year it’s the brain I think the healing just starts in the first year
Bill Gasiamis (1:08:28)
Mm hmm. I completely agree with that. I like to describe it using this analogy. In the first 12 months, you’ve just walked past the table and banged your knee on the coffee table. That’s how early the first year is you just banged it like, my God, you got so much time to heal and recover after that. And if you hear about plateaus, it’s all rubbish. If you hear about ⁓ recovery doesn’t happen.
⁓ later on, or that’s the best you can expect to get. That’s all not true. Just put it behind you. These people don’t know what they’re talking about. Keep going after that recovery.
Ty Hawkins (1:09:03)
Exactly.
Yep, I agree.
Bill Gasiamis (1:09:07)
Ty, on that note, thank you so much for joining me on the podcast, reaching out a second time to join me. I really appreciate connecting with you and learning about your story and all the best with the rest of your recovery.
Ty Hawkins (1:09:20)
Thank you for having me. ⁓ Thank you for ⁓ allowing me to reschedule and to be here. And I look forward to staying in communication and helping out in any way that I can for our community.
Bill Gasiamis (1:09:35)
Well, a big thank you to Ty for sharing his story. just love his mindset and a huge thank you to you for tuning in every week, supporting the podcast via Patreon, leaving comments on the YouTube channel and sharing this episodes with the people who need them the most. My book is at recoveryafterstroke.com/book. I will see you in the next episode.
The post Long-Term Effects of Brainstem Stroke: The Hidden Deficits No One Talks About appeared first on Recovery After Stroke.
Emotional Anger After Stroke: Trisha Winski’s Story of a Carotid Web, Aphasia, and Learning to Slow DownTrisha Winski was 46 years old, working as a corporate finance director, with no high blood pressure, no diabetes, and no smoking history. By every conventional measure, she was not a stroke candidate. Then one morning, she stood up from the bathroom, collapsed, and couldn’t speak. Her ex-husband, sleeping on her couch by chance the night before, found her and called 911.
The cause was a carotid web, a rare congenital condition she never knew she had. Three years and three months later, she’s living with aphasia, rebuilding her sense of self, and navigating something that doesn’t get nearly enough airtime in stroke conversations: emotional anger after stroke.
What Is a Carotid Web — and Why Does It Matter?A carotid web is a rare shelf-like membrane in the internal carotid artery that disrupts blood flow, causing stagnation and clot formation. It is a form of intimal fibromuscular dysplasia and affects approximately 1.2% of the population. Most people never know they have it.
Unlike the more commonly cited stroke risk factors, such as hypertension, diabetes, smoking, and obesity, a carotid web is congenital. You are born with it. There is no lifestyle adjustment that would have prevented Trisha’s stroke. That distinction matters enormously when you are trying to make sense of what happened to you.
“I have nothing that could cause it,” Trisha says. “No blood pressure, no diabetes. It’s hard.”
The treating hospital, MGH in Boston, caught the carotid web, something Trisha was later told many hospitals would have missed. It is a reminder of how much diagnosis still depends on the right clinician, the right technology, and a degree of luck.
Why Am I So Angry After My Stroke?One of the most underexplored dimensions of stroke recovery is emotional anger, not just grief, not just fear, but a specific kind of rage that has no clean target.
“Why me? Why did I have to have it? It’s frustrating. It’s so frustrating,” Trisha says. “I’m just mad. I don’t know who I’m mad at.”
This is a clinically recognized phenomenon. Emotional dysregulation after stroke can have both neurological and psychological origins. The brain regions that govern emotional control may be directly affected by the injury. At the same time, the psychological weight of sudden, unearned loss of function, of identity, of a future you thought you understood is enough to generate profound anger in anyone.
For people like Trisha, who had no risk factors and no warning, the anger is compounded. There is no behaviour to regret, no choice to unwind. The stroke simply happened. That can make the anger feel even more directionless and, paradoxically, even more consuming.
“Why me? Why did I have to have it? It’s frustrating. It’s so frustrating.”
Bill’s gentle reframe in the conversation is worth noting here: “Why not me? Who are you to go through life completely unscathed?” It’s not a dismissal, it’s an invitation to move from the question that has no answer to the one that might.
Aphasia: The Deficit That Hurts the MostTrisha’s stroke affected her left hemisphere, producing aphasia, a language processing difficulty that affects word retrieval, word substitution, and speaking speed. Her numbers remained largely intact, which helped her return to her finance role. But the aphasia has been, in her own words, the hardest part.
“If I didn’t have that, I wouldn’t be normal, but I could be normal,” she says. “The aphasia kills me.”
One of the quieter consequences of aphasia that Trisha describes is self-censoring, stopping herself from communicating in public because she fears taking too long, disrupting the flow of conversation, or being misunderstood. She has developed a workaround: telling people upfront she has had a stroke, so they give her the time she needs to get her words out.
The frustration-aphasia loop is well documented: the more stressed or frustrated a person becomes, the worse the aphasia tends to get. The therapeutic implication is significant. Managing emotional anger after a stroke is not just a well-being issue for someone with aphasia; it is directly tied to their ability to communicate.
“Whenever I’m not stressed, I can get it out. When I get nervous, I can’t,” Trisha explains.
The Trauma Ripple: It’s Not Just About YouOne of the most striking moments in this episode is when Trisha reflects on her son Zach and ex-husband Jason, both of whom were visibly distraught in the days after her stroke.
“I had a stroke. Why are they traumatized?” she says and then catches herself. “I forgot to look at it from their perspective. They watched me have a stroke.”
This is something stroke survivors frequently underestimate. The people around them, partners, children, friends, even ex-partners like Jason, carry their own version of the trauma. They watched helplessly. They made decisions under panic. They grieved a version of the person they knew, even as that person survived.
Acknowledging this doesn’t diminish the stroke survivor’s experience. It widens the frame of recovery to include the whole system and opens the door to conversations about collective healing.
Neuroplasticity Is Real — Give It TimeThree years and three months after her stroke, Trisha’s message to people in the early stages of recovery is grounded and honest.
“Neuroplasticity really does exist. My brain finds places to find the words I never had before. It takes longer, but it gets there. Just give yourself time.”
She also reflects candidly on going back to work too early, returning before she was medically cleared, crying every day, and unable to follow her own cognitive processes. “I should have waited,” she says. “But I did it. It taught me that if I ever had it again, I won’t do that.”
Recovery after stroke is non-linear, unglamorous, and deeply personal. But the brain is adapting, always. Trisha’s story is evidence of that and a reminder that emotional anger after a stroke, however consuming it feels, is not the end of the story.
???? Read Bill’s book on stroke recovery: recoveryafterstroke.com/book | Support the show: patreon.com/recoveryafterstroke
| DisclaimerThis blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan. |
Why Me? Navigating Emotional Anger After Stroke When You Did Nothing WrongNo risk factors. No warning. Just a carotid web she never knew about — and three years of emotional anger, aphasia, and finding her way back.
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Highlights:
00:00 Introduction – Emotional anger after stroke
01:36 The Day of the Stroke
07:05 Post-Stroke Challenges and Rehabilitation
13:06 Ongoing Health Concerns and Medical Appointments
22:40 Navigating Health Challenges and Medical Support
30:20 Acceptance and Coping with Mortality
38:36 Communication Challenges and Aphasia
42:09 The Journey of Recovery and Self-Discovery
51:51 Facing the Aftermath of Stroke
59:22 Emotional Impact on Loved Ones
01:04:57 Navigating Life Changes
01:13:25 Finding Joy in New Passions
01:25:12 Trisha’s Journey: Emotional Anger After Stroke
Transcript:
Introduction – Emotional anger after strokeTrisha Lyn Winski (00:00)
I don’t have anything that could cause it. I have nothing that, no blood pressure, no diabetes, It’s hard. It’s hard. don’t… It makes me mad. Really mad. Really, really mad that I to stroke. And like, everyone that has it…
Bill Gasiamis (00:07)
Yeah.
Trisha Lyn Winski (00:21)
or every dozen. I’m like, why me? Why did I have to have it? It’s frustrating. It’s so frustrating.
Bill Gasiamis (00:28)
Yeah, mad at who?
Trisha Lyn Winski (00:30)
I don’t know. I’m just mad. Like, I don’t know who I’m mad at.
Bill Gasiamis (00:35)
Before we get into Trisha’s story, and this is a raw, honest, and really important one, I wanna share a tool I’ve been using that I think can genuinely help stroke survivors get better answers faster. It’s called Turn2.ai. It’s an AI health sidekick that helps you deep dive into any burning question you have about your recovery. It searches across over 500,000 sources related to stroke, new research, expert discussions,
patient stories and resources, and then keeps you updated on what matters each week. I use it myself and it’s my favorite tool of 2026 for staying current with what’s happening in stroke recovery. It’s low cost and completely patient first. Try it free and when you’re ready to subscribe, use my code, Bill10 at
slash sidekick slash stroke to get a discount. I earn a small commission if you use that link at no extra cost to you. And that helps keep this podcast going. Also my book, The Unexpected Way That a Stroke Became the Best Thing That Happened is available at recoveryafterstroke.com/book.
And if you’d like to support the show on Patreon and my goal of reaching a thousand episodes, you can do that by going to patreon.com/recoveryafterstroke. Links are in the show notes.
Right, Trisha Winsky was 46 years old, healthy, had no risk factors and then a carotid web. She never knew she had changed everything. Let’s get into it.
Bill Gasiamis (02:06)
Trisha Winski, welcome to the podcast.
Trisha Lyn Winski (02:09)
Thank you.
Bill Gasiamis (02:10)
Also thank you for joining me so late. I really appreciate people hanging around till the late hours of the evening to join me on the podcast. I know it’s difficult for us to make the hours that suit us both. I’m in the daytime here in Australia and you’re in the nighttime there.
Trisha Lyn Winski (02:27)
Yeah. Yeah. It’s okay. I can come to you later. Yeah, it’s late.
Bill Gasiamis (02:34)
As a stroke survivor, is it too late?
Trisha Lyn Winski (02:36)
No, no, not at all.
Bill Gasiamis (02:38)
Okay, cool. Tell me a little bit about what you used to get up to. What was life like before the stroke?
Trisha Lyn Winski (02:45)
I just get up and get to work.
deal with it all day, come home, I’d go to the restaurant, the bars, my friends, and then like I had a stroke and everything changed. Everything changed in an instant.
Bill Gasiamis (03:00)
How old were you in the district?
Trisha Lyn Winski (03:02)
I was 46.
Bill Gasiamis (03:04)
And before that, were you in a family, married, do you have kids, any of that stuff?
Trisha Lyn Winski (03:08)
I
have a kid. Now he’s 28. He was 25 when I had it. I was married before, but like a long time ago. Actually, my ex found me when I had a serve. So he’s the one who found me. But so yeah, that’s all I have here. My mom passed away in November. So it’s been challenging. Yeah.
Bill Gasiamis (03:30)
Dramatic,
⁓ Sorry to hear that. how many years ago was a stroke?
Trisha Lyn Winski (03:37)
⁓ It’s three years and three months.
Bill Gasiamis (03:41)
Yeah. What were you focused on back then? What were the main goals in your life? Was it just working hard? Was it getting to a certain time in your career? What was the main goal?
Trisha Lyn Winski (03:50)
I think
I working hard, but I just wanted to get to a good place in my career. And I think I was in a good place. Now I second guess at all time because I’ve had strokes now, it doesn’t matter what happens. I’m always second guessing it. But I was in a good place. I just felt like I needed to make them better. And the stroke happened and I so didn’t.
Bill Gasiamis (04:17)
What kind of work did you do?
Trisha Lyn Winski (04:18)
I was the corporate finance director for an auto group.
Bill Gasiamis (04:22)
A lot of hours was it like crazy hours or was just regular hours.
Trisha Lyn Winski (04:26)
No, I worked a lot of hours, but in the end he wanted me work like 40, 50 hours a week. I couldn’t do that. 50 hours a week was killing me, but 40 was enough. Yeah.
Bill Gasiamis (04:37)
Yeah.
Were, did you consider yourself healthy? Was there any signs that you were unwell, that there was a stroke kind of on the horizon?
Trisha Lyn Winski (04:46)
No, nothing, The day before this, had, my eye was like, I want to say it’s twitching, but it wasn’t twitching. It was doing something like odd. And I didn’t realize that until I had a TIA recently, but I realized it then. It’s, how can I explain it? It’s like a clear, a blonde shape in my eye. it, when I move, it goes with me. And I try to see around it, I can’t see around it. And I said to Gary, I worked with him, was like,
I’m gonna have to go to hospital. This continues. can’t see.” And then it went away. And that’s the only symptom I had. Only symptom. And he said, no, I should told you that you might be having a stroke. like, even if you told me that, I never believed him. Never.
Bill Gasiamis (05:23)
Hello?
Yeah. When you’re, and it went away and you didn’t have a chance to go see anyone about it.
Trisha Lyn Winski (05:37)
Yeah, it went away in like, honestly, like five minutes. So I didn’t see anybody, but I thought it was okay. I mean, I guess now that I’m looking back at it, it’s kind of odd. It’s one eye, but I felt like it was gone. I don’t know. yeah. No, you don’t.
Bill Gasiamis (05:55)
Yeah. How could you know? mean, no one knows these things. And,
and then on the day of the stroke, what happened? Was there any kind of lead up? Did you notice not feeling well during that day? And then the stroke, what was it like?
Trisha Lyn Winski (06:09)
No, so I get up like every other day to go to work. I went in the bathroom and the night before that Jason said Jason’s ex-ad he stayed at my house because he needed need a place to stay because he couldn’t go out Zach again. I was like okay we’ll sleep in my couch I’m gonna go to work tomorrow but you can sleep here. So he was there and I think if he wasn’t there I would have died.
Post-Stroke Challenges and RehabilitationMakes me sad. Um, anyway, so when I woke up I went to bathroom and I stood up from the toilet and I like I fell over and I I didn’t even realize it. So I fresh my face in like five places when I fell and I didn’t even I didn’t even know it my whole side was numb. So I didn’t feel it. And Jason, you know, helped me to bed. I thought he helped me to bed. He didn’t he like drug me to bed.
He got in the bed and then I… He came back in like five minutes later, are you okay? Like he knew something was wrong. And I couldn’t articulate to him. So I said, I’m fine, I’m fine. I’m gonna go to work. So he put the phone in my hand to call my boss. And he came back in like five minutes later and I… He put it in my right hand so I didn’t call anybody. And he said, my God, I’ll never forget this. He said, my God, you’re having a stroke.
And I couldn’t talk. I couldn’t talk. I just… Yeah, I could hear him say that, but I couldn’t talk to him. It’s… It’s really scary. Like, even talking right now, like… It upsets me.
Bill Gasiamis (07:37)
but you can hear him say that.
This is really raw for you, isn’t it?
Yeah, understand. went through very similar things like trying to speak about it and getting it out of my self and trying to, you know, bring it into the world and get it off my shoulders. Like often brought me to tears and made it really difficult for me to have a meaningful conversation with anyone about it.
Trisha Lyn Winski (08:07)
It does.
Bill Gasiamis (08:09)
There’s small blessings there with you, okay? All happened when for whatever reason your ex was in the house and was able to attend you. It’s an amazing thing that that is even possible ⁓ considering how some breakups go and how possible. Yeah. Yeah. And so he called 911 and got you to hospital. Is that how you ended up in hospital?
Trisha Lyn Winski (08:15)
I know.
We’re good friends, it was a challenge.
Yes.
So they ended up taking me to MGH, it’s a hospital right down the street from me. ⁓ But he’s not from here, he’s from Pennsylvania. he didn’t know where to me, like, just has to go to the hospital. So they knew when they came up. So MGH is like known for their strokes, they’re like really good at strokes. ⁓ And so that’s where they plan on taking me.
Bill Gasiamis (09:01)
Yeah. And do you get a sense of what happened when you were in the hospital? Do you have any kind of recollection of what was going on?
Trisha Lyn Winski (09:11)
I honestly, in the first week, no. I remember seeing, in the first day, I saw Zach, my son, and Zach, his brother Connor was in there too, and Jason, they all were there with me when I woke up. But I saw them, and I saw my friend Matt, and then that’s all I remember seeing. I remember seeing my mom on the third day.
I’m in jail on this third day, but that’s about it.
Bill Gasiamis (09:41)
Yeah. And then did you have deficits? couldn’t feel one of your sides? Did that come back, whole problem, that whole challenge?
Trisha Lyn Winski (09:50)
So the right side, it came back, but it came back like sporadically. So I just kind of want to come back. So the first day I saw Matt and I put up my arm to talk to him and I couldn’t like put my arm out. So I just like tap my arm. ⁓ Now I can move my arm fully, but I can’t, I don’t have the dexterity in my arm. So I can’t like.
I can’t flip an egg with this hand. it’s like this and then this is like that. I can’t do this. ⁓ And my right foot has spasticity in it. then the three toes on the side, I could curl them up all the time.
Bill Gasiamis (10:36)
Okay, next.
Trisha Lyn Winski (10:37)
and I did botox
for it, nothing helps.
Bill Gasiamis (10:40)
huh. Okay. Have you heard of cryo-neuralysis?
Trisha Lyn Winski (10:42)
yeah, yeah, I got that back.
Bill Gasiamis (10:45)
You got cryo-neuralysis?
Trisha Lyn Winski (10:47)
No, what are you saying?
Bill Gasiamis (10:49)
That’s spasticity treatment. Cryo-neurolosis, it’s a real weird long word. There’s a dude in Canada that ⁓ started a procedure to help freeze a nerve and it expands the ⁓ tendons or something around that and it decreases spasticity and it lasts longer than Botox.
Trisha Lyn Winski (10:50)
⁓ no.
Okay.
⁓ yeah, you need to give me his name. We’re gonna talk. That’s I went twice to have it done. ⁓ it didn’t help at all. And I met, I met the guy, ⁓ the diarist, diarist ⁓ at the hospital. And he said, I didn’t think it was, it was going to work. I’m like, it’s the first I saw you. And he was like, I saw you and you had the shirt. I’m like, okay. I saw a million people that we can’t, I don’t remember who they are.
Bill Gasiamis (11:20)
Okay.
Yeah.
All right. So I’m going to put a link to the details for cryo-neuralysis in the show notes. ⁓ you and I will communicate after the podcast episode is done. And I’ll send you the details because there’s this amazing new procedure that people are raving about that seems to provide more relief than Botox in a lot of cases, and it lasts longer. And it’s basically done by freezing the nerve or doing something like that to the nerve.
in an injection kind of format and then it releases the spasticity makes it improve. ⁓ well worth you looking into it, especially if you’re in the United States and it’s in Canada. ⁓ I know that doctor is training people in the United States and around the world. So there might be some people closer to you than Canada that you can go and chat about. Yeah. And how long did you spend in hospital in the end?
Trisha Lyn Winski (12:28)
Yeah. Yeah. Awesome. I love it.
four weeks. Yeah. So the first, the first week I was at MGH, ⁓ they kept me for longer in the ICU because I had hemorrhagic conversion, transformation, whatever it’s called. I, you know what that is? Well, that went from the, I can’t think of what I was trying to say.
Bill Gasiamis (12:40)
for weeks.
Ongoing Health Concerns and Medical AppointmentsTrisha Lyn Winski (13:05)
It went from the aneurysm to the, not the aneurysm, the.
Bill Gasiamis (13:09)
The carotid artery. The clot, ⁓
Trisha Lyn Winski (13:11)
⁓ yes. Yeah,
carotid artery and went to my brain. So I my brain bleed for a couple of days, but not like bleed, bleed, but it showed blood. So they kept me in it for longer.
Bill Gasiamis (13:23)
Okay. And then did you go straight home? Did you go to rehab? What was that like?
Trisha Lyn Winski (13:29)
I went to rehab for three weeks. And I sobbed my eyes out. So at that point I was like, I was good, but I wasn’t at all good, but I thought I was good. I said, I wanna go home, I wanna go home. My son can, he teach me all, do all this stuff, I gotta go home. Now that I’m past it, there’s no way he could tell me, no way. I couldn’t tie my shoes.
Bill Gasiamis (13:34)
three weeks.
And when you came home, were people living with you?
Trisha Lyn Winski (13:56)
So he’s.
No, nobody was living with but he had to come move in with me for three months.
Bill Gasiamis (14:06)
Yeah, your son, yeah. What was that like?
Trisha Lyn Winski (14:07)
Yeah. Here’s my proxid.
I mean, honestly, at the time it was fine because I slept all the time. I slept like, God, I would go to bed like seven, 730 at night. And I was sleeping until like, at least, some sort of next day. I’d get up for a few hours, do what I had to do, and then fall back asleep. But just, I slept for a lot. So it was okay then. But come to the end of it, I’m like, okay, it’s time for you at your place.
I need my space again, but yeah, he’s yeah, I need to have my own space. But at the time I know I need to rest. Yeah, I do. Yeah. ⁓
Bill Gasiamis (14:36)
Yeah.
and you need somebody around anyway. It’s important to have
something near you if you’re unwell. Do they know what caused the stroke?
Trisha Lyn Winski (14:53)
⁓ So I had a karate web. means that… ⁓
It’s really, it’s really rare. Only like 1.2 % of the whole population has it and I had it. It’s co-indentinob… co-ind… it’s… so I got it I was born.
Bill Gasiamis (15:11)
Yep, congenital.
Trisha Lyn Winski (15:13)
congenital, but they don’t know. I said that that would make it so much sense that they did a scan of your whole body at some point. I would have known that I had that years ago, but I didn’t know it.
Bill Gasiamis (15:26)
I don’t know
what to look like, what to look for. The thing about scans, the whole body, my good friend of mine, the guy who helped me out when I was in hospital, he’s a radiographer and he does MRIs and all that kind of stuff. And he used to do my MRIs happened to be my friend happened to be working at the hospital that I was at. And he used to come and see me all the time. And I said to him, can we do a scan, you know, a preventative scan and check out, you know, my whole body? And he said, well, we can, but
Trisha Lyn Winski (15:28)
I know.
Yeah.
Bill Gasiamis (15:53)
What are we looking for? I said, I don’t know anything. He said, well, we could, we could find a heap of things or we could find nothing. And if we don’t know what we’re looking for, we can’t set our scanners to the particular, settings to find the thing that you’re looking for. Because one scanner looks for hundreds of different things and the settings for to look for that thing has to be set into the scanner. And that’s only when people have a suspicion that you might have X thing.
Trisha Lyn Winski (16:09)
Yeah.
Bill Gasiamis (16:23)
then they set the scanner to find X thing and then they’ll look for it then they find it. He said, well, if we go in and do whole body scan, but we don’t even know what resolution to set it, how long to do the scan for. We don’t know what we’re looking for. So we don’t know what to do. And you have to be able to guide me and say, I want you to look for, in my case, a congenital arteriovenous malformation. In your case, carotid web. And in anyone else’s case is an aneurysm or whatever, but a general scan.
Trisha Lyn Winski (16:38)
Yeah.
Bill Gasiamis (16:53)
Like it’s such a hard thing to do for people. then, and then sometimes you said you find things that people do have unexpectedly because they go in for a different scan and then you discover something else. But now they’ve got more information about something that’s quite unquote wrong with them. And it’s like, what do you do with that information? Do I do a procedure to get rid of it? Do I, do I leave it there? Do I monitor it? Like, do I worry about it? Do I not worry about it?
Trisha Lyn Winski (16:56)
Yeah.
Bill Gasiamis (17:21)
is that it throws a big kind of curve ball out there and then no one knows how to react to it, how to respond. So it’s a big deal for somebody to say, can we have a whole body scan so we can work out what are all the things wrong with me?
Trisha Lyn Winski (17:38)
I it’s true, but I think that for me, most people have a carotid web. It’s obvious. know how old you are, it’s obvious. So then in that regard, like a carotid web, it looks a little indentured in the bloodstream. looks a little indentured in your artery. So I think that they would have seen it, but… ⁓
Bill Gasiamis (18:02)
I love her.
Trisha Lyn Winski (18:06)
But then again, I don’t know. The hospital I went to, he said, you’re lucky you came here because most hospitals would have missed us.
and I’m like,
Bill Gasiamis (18:15)
because they
probably didn’t have the technology to find it.
Trisha Lyn Winski (18:17)
I don’t know.
when I came to, it wasn’t months later, but I saw it on the scan. like, ⁓ it’s right there. ⁓ He said, yeah, but I thought it would be obvious, but it’s not so obvious.
Bill Gasiamis (18:33)
I just did a Google search for it and it says a carotid web is a rare shelf like membrane type narrowing in the internal carotid artery, specifically arising from the posterior wall of the carotid bulb. It is a form of intimal fibromuscular dysplasia that causes blood to stagnate forming clots that can lead to recurrent often severe ischemic strokes. Okay. So
it causes blood to stay stagnant in that particular location causing clots. And you in the time we’ve been communicating, which is only in the last three or four weeks, you even sent me a message saying you just had an S you just had a TIA. ⁓ how come you’re still having clots? they not treating you or
Trisha Lyn Winski (19:20)
Yeah.
No,
I think they so they gave me um a scent in my re to kind of write that I don’t know why I had it cuz um, but my eye was like acting crazy again Just one eye and I I didn’t want to go to the hospital. I I don’t want the hospital at all for anything if I have if I don’t have to go I’m not going to hospital I Text Jason and Zach and they’re like no you have to go like I’ll wait a little while so
Meanwhile, I was waiting a little while because I didn’t want to go and then I listened to ⁓ a red chat chat GBT He said no you have to go right now. Here’s why I’m like Now it’s like five hours later. I’m Sorry, so I went but and they said that I have ⁓ It’s likely I had a clot They don’t know where it came from though. So that’s that’s the thing is it’s confusing and by the way I think there’s something to be said about ⁓ I think if you have a stroke
You can have one again easier than somebody who didn’t. I didn’t know that, but I learned it quickly. ⁓ So they said I had it, maybe went up in my eye, but it broke apart before it became an actual stroke. But I don’t know.
Bill Gasiamis (20:41)
thing.
I love that you didn’t want to go and you ignored the male influences in your life, but you listen to chat.
Trisha Lyn Winski (20:50)
Thank you.
I did, I did.
They’re so smart. they say, I find on Google anyway. So that I listened to ChatGVT, it was like, I don’t know. And I know that like…
Bill Gasiamis (21:05)
You know
that that’s kind of mental.
Trisha Lyn Winski (21:08)
It is actually, but I know that like my son is actually really smart and I think that they, but I didn’t listen him. I just listened to Chad Judy.
Bill Gasiamis (21:18)
Yeah. Anyhow, I love that you went in the end because, ⁓ and why don’t you want to go like, you just hate doctors and hospitals and that kind of thing? They saved you, didn’t they? Didn’t they save you? Didn’t they help you?
Trisha Lyn Winski (21:29)
There was? Yeah,
but I don’t know. I think I spent so much time in there. ⁓ I don’t know. It’s in my head. I don’t like to sit in hospitals because of that. So after having the stroke, I stayed in hospital for month. I got out. I went back in like two weeks. I fell over twice. They thought that’s why. So when I was in hospital,
something like they go Vegas something is pretty common. And I was like, okay, I did want to go then. I did want to go and then Zach made me. And then two months later, I went in to get the stint. And at that time I got a period. So it’s a long story. But I said to the doctor, I’m like, well, I’ll be okay. Does it do anything else because of this? He’s like, no, you should be fine. But if it gets bad, you have to go the hospital.
he got bad. I almost died. I almost died from that. And that made me traumatized because I was awake and alive for all of it. I saw it all and passed out like six times in like three, I don’t know how many days, like five days. Yeah, but.
Navigating Health Challenges and Medical SupportBill Gasiamis (22:46)
Yeah.
The challenge with something going wrong in hospital is that it’s less likely to be as dramatic as something going wrong at home. And that’s the thing, right? If you haven’t got help, then the chances that your stroke cause you way more deficits. That’s like so much worse. The best place for you to be is somewhere other than at home because you don’t want to risk being at home alone when something goes wrong and then you’re home alone.
Trisha Lyn Winski (23:04)
Yeah.
Bill Gasiamis (23:15)
when the blood flow has stopped to your head for a lot of hours. Like it could kill you, it make you more disabled and it could do all sorts of things. it’s like, but I get the whole, what is it like? It’s kind of like an anxiety about medical people and hospitals and stuff like that.
Trisha Lyn Winski (23:20)
Yeah.
Yeah. I
think that it’s mostly like I don’t like to stay there. I got a weird thing about this. I don’t like to stay there. I can stay anywhere I go, but the hospital really bothered me. I think that they were actually pretty good to me. So I’m not mad at them for that. ⁓ But I don’t want to see them now if I can possibly help it.
Bill Gasiamis (23:54)
Yeah, you’re done with them.
Trisha Lyn Winski (23:56)
I’m totally done.
Bill Gasiamis (23:58)
Yeah, I get it. I got, I got to that stage. My dramas were like three or four years worth of, you know, medical appointments, scans, surgery, rehab.
Trisha Lyn Winski (24:07)
Oh my god. Medical appointments.
Medical appointments, forget it. They’re like, oh my god. I have so many of them, I can’t even say it.
Bill Gasiamis (24:11)
Yeah.
I hear you. hear you. went through the same thing and then I got over it. now lately I’ve been going back to the hospital and seeing medical doctors for, um, not how I haven’t got heart issues, my, I’ve got high blood pressure and they don’t know what’s causing it. And, know, I’ve had my heart checked. I’ve had my arteries checked. I’ve had all these tests, blood tests, MRIs, the whole lot, and it’s getting a little bit old, you know, like I’m over it. But the truth is without them, I don’t.
I don’t have a hope. Like if my blood pressure goes through the roof, you know, which had been, had been sitting at 170 over 120, 130. And I have a brain hemorrhage because of uh, high blood pressure. know what a brain hemorrhage is like, you know, I don’t want to have another one. So I’m like, I am going to, uh, I’m going to shut up, go through it and be grateful that I have medical support. Um, which, which
Trisha Lyn Winski (24:55)
Yeah.
I know.
Yeah.
Bill Gasiamis (25:14)
You know, a lot of people don’t get to have, it’s like, whatever, you know, I’ll cop it. I’ll cop it. I’ll go. And hopefully they can get ahead of it. So now they’re just changing my medication. I want to get to the bottom of it. Why have I got high blood pressure? The challenge with the medical system that I have is, is they just tell you, you have it and here’s something to stop it from being high. But I, they never say to you, we’re going to investigate why, like we’re going to try to get to the bottom of it.
Trisha Lyn Winski (25:16)
Yeah.
Yeah.
Bill Gasiamis (25:40)
and I’ve been pushing them to investigate why do I have high blood pressure.
Trisha Lyn Winski (25:44)
sure. So I
don’t have, I never had high blood pressure but speaking of I’ve, I don’t have a problem with my heart but they, so that when I had this for the first time they made me get out and have to, I had to wear a heart monitor for a month and I said like why am I wearing a heart monitor? There was something, they, I don’t know what it is.
Bill Gasiamis (25:51)
Yeah.
Trisha Lyn Winski (26:13)
Afib or something like that in there. And this time was the same thing. had heart bars over there right now. I had to send it back and they’re gonna send me new one. every time I’ve taken my heart test, and by the went for EKG just the other day. It was fine. But they found like something near my heart rate, it’s not like I need to be concerned about these. It’s nothing I need to be concerned about. So I was like, okay.
They’re making you wear that for a month. Anyway.
Bill Gasiamis (26:46)
Yeah, just to go through things, just to check things, just to work some stuff out.
Trisha Lyn Winski (26:47)
Yeah.
Yeah, yeah, this month I have ton, I have like seven appointments.
Bill Gasiamis (26:56)
Yeah, I used to forget my appointments all the time, even though I had him in my calendar, even though I had reminders, I just, even though I got reminded on the day, an hour before, two hours before, he meant nothing to me. I would just completely forget about him.
Trisha Lyn Winski (26:59)
me too.
Me too.
Same thing. I forgot all of it. And I had to share it with Zach and he could tell me, have an appointment. Like, okay. I forgot. He’s like, have an appointment. I’m like, fuck, I have to go.
Bill Gasiamis (27:13)
Yeah.
How long did it take you to get back to work?
Trisha Lyn Winski (27:28)
I at least I went back to work. I went back to work before I was told I could go back to work. And I wrote them an email like, listen, I can’t sit at home and run one fucking freeze. I need to do something. So I went back to work. ⁓ And at first I went back to work part time. And honestly, like I cried. I left there crying every day. And not because I think that I.
Not because of people. don’t think it was the people. I couldn’t understand. My head was like… I couldn’t focus and put all that work into my… I couldn’t put it into me. So I couldn’t understand what I was doing. And then you give them a month. Eventually I got it, but it was a struggle. I should have waited until October. And they said I should go back in October. Maybe I could go back in October. I should have waited until then.
Bill Gasiamis (28:22)
Yeah. Do you kind of like a nervous energy type of person? Do you can’t sit still or is it like, can’t spend a lot of time on your own with yourself? Like, is it?
Trisha Lyn Winski (28:34)
I can spend a lot of time by myself. don’t like to ⁓ here by myself. I can be by myself. I don’t like to be… I can’t think of… What did you say before?
Bill Gasiamis (28:48)
Is it just
downtime? Is it the downtime? it too much? Did you have too much downtime?
Trisha Lyn Winski (28:52)
Yes, definitely too much downtime. But I couldn’t see I was sitting at home and Zach was there, whatever he was doing. was like, I can’t, I need to do something. So I went to work and in all reality, I should have walked around. should have, I didn’t do that.
Bill Gasiamis (29:04)
Yeah.
Yeah. How did your colleagues find you when you went back? Did they kind of appreciate what you had been through? Was that easy to have those conversations? What was it like?
Trisha Lyn Winski (29:21)
Yeah, so I oversaw all the finances department. ⁓ They were actually like, honestly like rock stars. They were like really, really good to me. ⁓ That was helpful. because I love them anyway. it made me feel good to say that that’s what I’m doing. ⁓ But I still left there and cried. Not because like I think that I just couldn’t understand it.
They were good to me. Everyone was good to me in theory, I couldn’t understand.
Bill Gasiamis (29:56)
you had trouble with the work, with doing your job because of your cognitive function.
Trisha Lyn Winski (29:59)
Yeah, yeah,
yeah, there’s a other little things with that, it’s more or less the cognitive function is a problem to do the work.
Bill Gasiamis (30:12)
Yeah. Tiring. Like I mentioned, it’s really mentally draining and tiring. remember sitting in front of a computer trying to work out what was going on on the screen and it being completely just blank.
Acceptance and Coping with MortalityTrisha Lyn Winski (30:22)
And so that’s actually what probably got me the most was that what you’re saying. I’d be sitting there and look at my screen. I couldn’t remember what I was doing, but I remember like weird things. I remember how to do like Excel. I don’t know how I remember Excel, but I did. I was really good with numbers. And they said that I was going to have a problem with numbers and everything. So I have aphasia too. I don’t have a choice with that, but
Bill Gasiamis (30:31)
Yeah.
Trisha Lyn Winski (30:49)
That’s why I talk so weird.
Bill Gasiamis (30:52)
Okay, I didn’t notice.
Trisha Lyn Winski (30:54)
Oh, oh, I feel good. But
yeah, I have aphasia. But I can do certain things. And the numbers was going to be, they said it going to, I couldn’t, that’s going to be a problem. And the numbers, I can do all day. But I can’t do other little things.
Bill Gasiamis (31:11)
I understand. So you went back to work. It was kind of helpful, probably too early to go back, but good to be out of the house. Good to be connecting with people again. And has that improved? Did you find that you’ve been able to kind of get better in front of a screen, better with the things that you struggled with, or is it still still a bit of a challenge?
Trisha Lyn Winski (31:19)
Yeah.
Yeah.
So two things, ⁓ I got fired eventually, and that’s another whole issue.
Yeah, yeah, we’ll talk about that another time. but ⁓ so, but now that I’m here, I could look my computer and it’s fine. I can do it all day. But I really, it’s a long story. think that Warren, my boss, ⁓ Deb, but they definitely like hinder me. ⁓
Bill Gasiamis (31:39)
Understand.
another time.
Yeah.
Okay. I understand. Well, maybe we won’t talk about it, like, because of the complications with that, but that’s all good. I understand. So, ⁓ do you know, a lot of the times you hear about acceptance and you hear about, ⁓ like,
Trisha Lyn Winski (32:07)
Yeah. Yeah.
Yeah.
Bill Gasiamis (32:23)
When some, well, something goes through something serious, something difficult, you know, there has to be kind of this acceptance of where they’re at. And that’s kind of the first stage of healing recovery, overcoming. Where are you with all of this? you like, totally get that at 46. It’s a shock to have a stroke. You look perfectly fine, perfectly healthy. This thing that you didn’t know about that you’ve had for 46 years suddenly causes an issue. How do you deal with your mortality and knowing that
things can go wrong, even though you’re not aware of, you you’re not doing anything to really make your situation worse. You look fit and healthy. Were you drinking, smoking, doing any of that kind of stuff?
Trisha Lyn Winski (33:06)
I drank occasionally, I wasn’t a drunk, I don’t smoke.
Bill Gasiamis (33:11)
yeah
social smoke social drinker but not smoker
Trisha Lyn Winski (33:15)
Yeah, I don’t smoke.
I don’t have anything that could cause it. I have nothing that, no blood pressure, no diabetes, It’s hard. Jason talks about it all the time. It’s hard. don’t… It makes me mad. Really mad. Really, really mad that I to stroke. And like, everyone that has it…
Bill Gasiamis (33:24)
Yeah.
Trisha Lyn Winski (33:41)
or every dozen. I’m like, why me? Why did I have to have it? It’s frustrating. It’s so frustrating.
Bill Gasiamis (33:48)
Yeah, mad at who?
Trisha Lyn Winski (33:50)
I don’t know. I’m just mad. Like, I don’t know who I’m mad at.
Bill Gasiamis (33:56)
Yeah. The thing about the why me question, it’s a fair question. asked it too. I even ask it now sometimes, especially when, um, I’ve got to go back for more tests, more, uh, now I’ve got high blood pressure. Like, like I needed another thing to have, you know, like, and it’s like, the only thing that I come back with after why me is why not me? Like, who are you to go through life completely unscathed and get to 99 and then die from natural
Bill Gasiamis (34:25)
wanted to stop there for a second because that question, why me, is something I wrote about in my book. It’s one of the most common and most painful places stroke survivors get stuck. If you want to read about it and how I worked through it and what I found on the other side, the book is called The Unexpected Way That a Stroke Became the Best Thing That Happened and it’s available at
You’ll find the link in the show notes. And now let’s get back to Tricia.
Bill Gasiamis (34:54)
like
Trisha Lyn Winski (34:54)
Yeah.
Bill Gasiamis (34:55)
You’re normal. being normal, ⁓ normal things happen to people. Some of those things that are shit are strokes and heart attacks and stuff that you didn’t know that you were born with. ⁓ what’s really interesting though, is to live the life after stroke and to kind of wrap my head around what that looks like. My left side feels numb all the time. ⁓ tighter, ⁓ has spasticity, but nothing is curled. Like my fingers on my toes are not curled, but it’s tighter. ⁓ it hurts.
⁓ It’s colder, it’s ⁓ sensitive, I’ve got a, and I always have a comparison of the quote unquote normal side, the other side, it’s always. And the comparison I think is worse because it makes me notice my affected side and that noticing it.
Trisha Lyn Winski (35:31)
Yeah.
or yeah.
Bill Gasiamis (35:46)
makes the reality happen again every day. Like it’s a new, I wake up in the morning, I get out of bed, my left side still sleepy. I have to be careful. If I’m not careful, I’ll lose my balance. I don’t want to fall over. And it’s like, I get to experience a different version of myself. And sometimes I want to be grateful for that. want to say, wow, what a cool, different thing to experience in a body. But then I’m trying to work out like, what’s the benefit of it? don’t know if there’s a benefit. ⁓
Trisha Lyn Winski (36:14)
I don’t know either.
Bill Gasiamis (36:15)
to me, but,
Trisha Lyn Winski (36:15)
I don’t either.
Bill Gasiamis (36:18)
but here I am talking to you and, and, and 390 people before you, ⁓ about strike all over the world and we’re putting something out and it’s making a difference. And maybe that’s the benefit. I don’t know, but do know what I mean? Like, why not us? I hate asking that question too.
Trisha Lyn Winski (36:34)
I don’t know.
You had ⁓ the podcast on YouTube and I stumbled upon it on the wise. I watched YouTube and then you came out there and I’m like, so before that I was looking at different, I watched every video, every video on strokes, every video I could possibly type but I watched. I did. ⁓ And then I stumbled upon your stuff and I watched that stuff too.
And that’s why I wouldn’t have thought to call you or reach out to you.
Bill Gasiamis (37:11)
Was it helpful? Was it helpful?
Trisha Lyn Winski (37:13)
Yeah, it is helpful. But it doesn’t change the fact that I had a stroke. All the people that had it, I feel bad for them. Honestly, like, so when I was at the hospital, they had me join a bunch of groups on Facebook and Instagram that are like, they’re people who’ve gone through a stroke. most, I don’t comment on them. I don’t say, because most of the time it’s people bitching.
Bill Gasiamis (37:19)
Yeah.
Yeah.
Trisha Lyn Winski (37:43)
But I really like, times I, trust me, I’m like ready to kill somebody. But I don’t like say it there. I only ask them questions that are really serious. But sometimes I read what they say. And there was a guy the other day, I don’t know what he wrote, but he had like all kinds of words that they were way jumbled. was like, his message just didn’t make sense. I thought to myself, God, if I was like that, I’d be so sad.
Somebody, I do think that he’s worse than I could be, but you don’t know.
Bill Gasiamis (38:19)
Yeah.
Communication Challenges and AphasiaYeah. He, his words are more jumbled than yours. And you, if you, you, you’re thinking, if you were like that, you would be probably feeling more sad than you currently are. And you’re assuming that maybe that person is feeling sad, but maybe they’re not, maybe they just got the challenge and they’re taking on the challenge and they’re trying to heal and recover. don’t know. And maybe, maybe they’re getting help and support through that therapy and also maybe psychological help and all that kind of stuff.
Have you ever had any counseling or anything like that to sort of try and wrap your head around what the hell’s going on in your life?
Trisha Lyn Winski (38:54)
So I did it once and actually like I think she was okay. I felt like I was always having to talk. I know that I’m so stocked but she wasn’t asking me a lot of questions and I felt like she needs to me more questions. I’ll have more answers but like but she didn’t. She just wanted me to talk so I just talked. But I stopped seeing her because I… So two reasons. I stopped seeing her because they when they fire me I…
I didn’t know what I had to do. I knew I insured that I didn’t know how long it was going to be for me to have that. So I talked to her for a little bit and then I stopped talking to her because I just couldn’t deal with it. I think now I’m getting to the point where I’m going to do it.
Bill Gasiamis (39:37)
It was a bit early.
I like that. I like what you said there. Cause sometimes it’s early. It’s too early to go through that and unwrap it. Right. And now a little bit of times past, you probably have more conscious awareness of, do need to talk about this and I need to go through and see a certain person. And now I’m going to take that action. It’s been three years and now I can take that action. like it. ⁓ and I like what you said about, you have to feel like you’re connected to that person or you have rapport or
Trisha Lyn Winski (39:46)
It is. Yeah.
Yeah.
Yeah. Yeah.
Bill Gasiamis (40:11)
they get you and you’re not just, it’s not a one way conversation. That’s really important in choosing a counselor. I know my counselor, we, I didn’t do all the talking. was like you and me chatting now about stuff. had a conversation about things regularly. And therefore, ⁓ one of the good things that she was able to do was just ease my mind when I would go off on real negative tangents, you know, she would try to bring me back down just to calm and.
Trisha Lyn Winski (40:35)
Yeah.
Bill Gasiamis (40:39)
settle me down and offer me hope.
Trisha Lyn Winski (40:42)
I think my, honestly my biggest problem with this whole stroke and having it at all, I have aphasia and that 100 % kills me. Because I can’t like, I can talk like normal but I can’t talk like…
I forget what I’m saying. So it’s in my brain, but I can’t spit it out. I get really frustrated at that point. people, I had a stroke, my left hemisphere and my right side went numb. My left hemisphere is all kinds of different, different things that I can’t do. The good news is my left means I can’t like, I can talk to people like this. But the other person and that guy I was talking about, he probably had the right side, his aphasia was.
really bad, really bad. But I was a person who talked like really fast all the time, all the time. And now like, I think part of my brain goes so fast and I can’t spit it out. I get really, I get, it’s, yeah.
Bill Gasiamis (41:38)
Okay.
as quickly as you can.
Okay, so you know, I’ve spoken to a ton of people who have aphasia. And one of the things they say to me is when they have frustration, their aphasia is worse. So the skill is to learn to be less frustrated with oneself, which means that’s like a personal love thing. That’s self love, that’s supporting yourself, you know, and going.
Trisha Lyn Winski (42:00)
It is.
The Journey of Recovery and Self-DiscoveryYeah, that’s a point. That’s a good point.
Bill Gasiamis (42:13)
And it’s going like, well, you know, you’re trying your best. It’s all good. You know, don’t get frustrated with yourself. Don’t hate yourself. Don’t give yourself a hard time about it. ⁓ and try and decrease the frustration. Then the aphasia gets less impactful, but, ⁓ and then maybe, you know, this part of learning the new you is bring the old Trisha with you, but maybe the nutrition needs to be a little bit more slow, a little more measured, a little more calm. And it’s a skill because for 46 years, you were the regular.
Trisha Lyn Winski (42:36)
Yeah.
Bill Gasiamis (42:42)
Tricia, the one that you always knew, but now you’ve got to adjust things a little bit. It’s like people going into midlife, right? Like us, you know, in our fifties and then, um, or, know, sort of approaching 50 on and beyond and then go, I’m going to keep eating, uh, fast food that I ate when I was 21 and 20, know, McDonald’s or sodas or whatever. You can’t do it anymore. You have to make adjustments, even though that’s been your habit for the longest time, your body’s going, I can’t deal with this stuff anymore.
Trisha Lyn Winski (43:03)
Yeah.
Bill Gasiamis (43:12)
Take it out, you know, let’s simplify things. And it’s kind of like how to approach. I stroke recoveries things need to kind of get paid back and simplified. And it has to start with self love. And you have to acknowledge how much effort you’ve already put in for the last three years to get you to the position that you are now, which is far better than you were three years ago when the stroke happened. And you have to celebrate.
how much your body is trying to support you heal your brain. Your body’s trying to get you over the line and your mindset is getting frustrated with itself, which is making things worse. Tweak that and things will get a bit better maybe. I don’t know.
Trisha Lyn Winski (43:55)
It does.
You’re 100 % right. ⁓ So whenever I’m not stressed, so two things. I think when I talk to people I don’t know, I always get like nervous about that. ⁓
Bill Gasiamis (44:10)
You think they’re thinking about things that you’re not they’re not really
Trisha Lyn Winski (44:13)
Yeah, but then who knows what they’re thinking of. that’s just how I get, whenever I get like, I went to a concert like a couple of years ago and I was like, I believe I couldn’t, I could hear that the music is so loud in my brain. Like I gotta get out of here. So I left. I’ve gotten better since then, but there’s something about, I have to do things slower.
I have to do things over. I’ve realized that like recently, like in the last like maybe month, I have to do things very slow. I have to. And maybe this is God’s way of like, tell me like slow the f down, you’re going too fast. But that’s how I live my whole life. And then all of a sudden, now you’re not going to get up. Yeah, it’s a huge testament. So I can do it right. Not always right.
Bill Gasiamis (45:01)
Yeah, there’s an adjustment. Yeah, adjustment. Yeah.
Trisha Lyn Winski (45:09)
because again, it’s isophagia, it’s gonna be hair mess, if I go slower, much slower, I can get it all out. But, ugh.
Bill Gasiamis (45:22)
It’s a lot of work, man. It doesn’t end here. You know, the work just as just beginning, you know, this getting to understand yourself, to know yourself, to support yourself, to be your biggest advocate. ⁓ and then to fail and then to try and be the person that, ⁓ picks themselves up and goes again and tries again without getting frustrated. I know exactly what you mean. Like so many people listening will know what you mean.
Trisha Lyn Winski (45:22)
It’s a pain. It’s a pain!
Bill Gasiamis (45:51)
And with time, you’ll get better and better because I know that three years seems like a long time, but it’s early in the recovery phase. The recovery is still going to continue. Year four, five, six, seven will be better and better and better. I’m, I’m 12 years post brain surgery and 14 years post first incident. So it’s like, things are still improving and getting better for me.
Trisha Lyn Winski (46:17)
Yeah.
Bill Gasiamis (46:18)
And one of the things is the way that my body responds to physical exercise. went for a bike ride a little while ago, a couple of weeks ago. And when I used to go for a bike ride at the beginning, um, man, I would be wiped out for the entire day. Uh, and I used to do a morning bike ride about like 10, 30, 11 o’clock and I’d be wiped out for the rest of the day.
Trisha Lyn Winski (46:32)
Yeah.
Bill Gasiamis (46:39)
Whereas now I can go for a bike ride and just be wiped out like a regular person, you know, about an hour or two, and then I’m back on board with doing other tasks. So it takes so much time for the brain to heal. Nobody can give you a timeline and you’ve got heaps more healing to go.
Trisha Lyn Winski (46:57)
So I looked at my stuff on YouTube, how long it takes to recover from a stroke. I’ve looked at that everywhere. Everywhere I can find. I’ve looked at that. It’s so funny. Like everybody says that it’s, everybody’s story is different. Everybody. It doesn’t matter how long you were in hospital for, doesn’t how long. But that like, it’s crazy. have no like timetable of when I’m going to get better. None. I have to deal with it.
Bill Gasiamis (47:27)
Yeah. It’s such a hard thing. It’s not a broken bone, know, like six weeks, stay off it, do a little bit of rehab and then you’re back to normal.
Trisha Lyn Winski (47:28)
It sucks, but.
I had two years before this or maybe a year before that, had a rotator cuff surgery.
I look back at that and I’m like, that was so bad. And that was like night and day. The stroke definitely like, the stroke killed me. Not the stroke. I don’t want to say the stroke. I think having aphasia killed me. I do, the stroke is, get me wrong. I don’t like it either, but ⁓ the aphasia kills me. If I didn’t have that, I wouldn’t be normal, but I can be normal. But the aphasia.
Bill Gasiamis (48:00)
Okay.
Yeah.
But,
but what, but that word killed me is a real heavy word, right? maybe you should consider changing that word, but also like, didn’t pick that you had aphasia and I, and I speak to stroke survivors all the time. Like I didn’t pick it. I, I just assumed that was the way you process your words and that’s how you get things out. Like it didn’t, I didn’t notice it at all.
Trisha Lyn Winski (48:26)
I know, I know, it’s funny that said
Yeah, that’s actually good. That’s really good. But I know it’s it. I definitely know it’s it. I could talk like a mile a minute and now like.
Bill Gasiamis (48:47)
Yeah.
Trisha Lyn Winski (48:52)
I mean…
Bill Gasiamis (48:52)
Maybe it was maybe maybe now it’s more about ⁓ quality rather than quantity, Trisha.
Trisha Lyn Winski (49:00)
Apparently it is.
Bill Gasiamis (49:01)
I’m not saying that you didn’t have quality in that I didn’t know you so I’m not kind of yeah but you know what I mean like
Trisha Lyn Winski (49:03)
Yeah.
No, it’s okay.
Trust me, it’s okay. But yeah, it just frustrates me. I can’t get out what I want to get out. And so at that time, just give me a little time, I’ll get it out. But I can’t say that to people when I’m out. I can’t say this to So I just, I don’t say it at all.
Bill Gasiamis (49:22)
Yeah.
so you stop yourself from communicating because you think you’re taking too long and it’s interrupting the flow of the conversation. Yeah. I think you’re doing that to yourself. I don’t think that’s true. We’ve had a fantastic conversation here and I’ve never picked it.
Trisha Lyn Winski (49:34)
Yeah.
all day.
But so
you’re somebody who’s had a stroke before. It’s kind of different for me because you had. But if you didn’t have a stroke, will be… Well, I don’t know. Maybe not. Maybe one-on-one I’m okay. No, think I… No, it’s because you had a stroke. I think of all the people I’ve talked to and they’re one-on-one. I don’t do well with them. But I think that you’ve had a stroke so I just… I know how to communicate with you.
Bill Gasiamis (49:54)
I understand.
And maybe you’re more at ease about it. Less feeling, judged. I understand. Yeah.
Trisha Lyn Winski (50:20)
Yes, all day.
Even
that guy I told you about that that said that on Facebook God like I Really like my heart goes out to him But then that there’s the people that are fishing a plane I’m like
I want to say my heart goes out to them, it really, it goes to certain people. I think that.
He’s like going through it.
Bill Gasiamis (50:45)
Yeah. One of the problems with going to Facebook to bitch and moan about it, especially when you’re going through it is that you get an abundance of people who also are there to bitch and moan about it. And, and that makes it worse. think you should do bitching and moaning on your own. Like when there’s no one watching or listening. Cause then that way there’s not a loop of bitching and moaning that happens. That makes it dramatically worse for everybody.
Trisha Lyn Winski (51:01)
Yeah, I do it myself.
Bill Gasiamis (51:09)
⁓ and that’s why I don’t hang around on Facebook, Instagram, social media, or anything like that for those types of conversations. If I’m not sharing a little bit of wisdom or somebody’s story or, ⁓ asking a question, like a genuine question, one of the questions might be, did you struggle driving and did you have to pull over and go to sleep in the middle of the road? If you had a big trip ahead of you in the car, I’ve done that. Like if, if I’m not asking a question like that, I don’t want to be, ⁓ on social media saying.
life sucks, this sucks, that sucks. Like forget about it. What’s the point of that? That’s why I started the podcast so I can have my own conversations about it that were positive based on what we’re overcoming rather than all the shit we’re dealing with. And that way ⁓ we take off that spiral, the negative downward spiral. trying to make it an upward spiral. You know, where things are.
Trisha Lyn Winski (51:41)
Yeah.
Facing the Aftermath of StrokeBill Gasiamis (52:05)
I don’t know, we’re seeing the glass half full perhaps, or we’re seeing the positive that came out of it. If something like, I know there’s some positive stuff that came out of stroke for you. Day one, you definitely didn’t think that maybe three years down the track. Maybe if it wasn’t for this, well, then that wouldn’t have happened for me. Like I’ve been on TV. I’ve been at the stroke foundation. I’ve been on radio. I’ve been, I’ve presented. I’ve got a podcast. wrote a book.
Like it’s taken years and years for all those good things to come, but they never would have happened if I didn’t have a stroke. So I wanted to have those types of conversations, you know, what are the positive things we can turn this into? Because dude, then there’s just enough shit to deal with that. We don’t have to deal with every other version of it, you know? ⁓ and I think it’s better to have your me personally, my negative moments alone, cause I don’t want to get into a competition with somebody.
Trisha Lyn Winski (52:42)
That’s good. Yeah.
Bill Gasiamis (53:05)
who I say, I didn’t sleep well, my left side hurts, it feels like pins and needles. And then they say to me, ⁓ you think that’s bad? Well, you know, forget about it. I don’t want to be that that guy on the other end of a conversation like that, you know.
Trisha Lyn Winski (53:13)
Yeah.
⁓ So you said your left side, ⁓ you see you have pin the needles, is always like that? So I’m sorry, had hemorrhagic stroke? Okay. I know the difference between two, ⁓ why did you have hemorrhagic stroke?
Bill Gasiamis (53:27)
Always, yeah, never goes away.
Yeah, Brain blade.
I was born with a blood vessel that was malformed. So it was like really weak one. I was really like, uh, was kind of like, uh, uh, it wasn’t created properly in my brain when I was born and it’s called an arteriovenous malformation. then they sit idle, they sit idle and they do nothing for a lot of people. And then sometimes they burst.
Trisha Lyn Winski (53:58)
Mm-hmm.
⁓ I heard it.
Bill Gasiamis (54:08)
And people sometimes have them all over their body. They don’t have to have them in their head. They can have them on the skin, ⁓ in, in an arm on a leg, wherever. And on an arm and a leg, they, they decrease the blood flow and they create real big lesions of skin damage on the surface in a brain. They leak into the brain and they cause a stroke. ⁓ so the challenge with it is like you, there was no signs and symptoms.
for any of my life until it started bleeding. And when I took action, eventually, I was like, yo, I didn’t want to go to the doctor. I didn’t want to go to the hospital. I want to do any of that. It took seven days for me to go to the hospital. When I finally got there, they found the scan, found the blood in my head. And then they thought it would stop bleeding and it didn’t. And then it bled again and they wanted to monitor it to see if it stops bleeding. They wanted to try to avoid surgery.
And then a bled a third time. And then after they bled the third time, they said, we have to have surgery. We’ve got to take it out because it’s too dangerous. And when it bled the second time, I didn’t know who my wife was. I blanked out. ⁓ I couldn’t speak afterwards. I couldn’t type an email. ⁓ I couldn’t work. I couldn’t drive. ⁓ I couldn’t remember who came to visit me. I couldn’t start and finish sentences. Yeah. So much drama. And then.
Trisha Lyn Winski (55:30)
And yeah, same thing.
Bill Gasiamis (55:36)
The numbness wasn’t there until after the brain surgery. So when they removed the blood vessel, I solved the problem in my head, but then the complication from the surgery was when I woke up, I couldn’t walk. So I had to learn how to walk again. And, ⁓ the numbness has never gone away. It’s there all the time.
Trisha Lyn Winski (55:41)
⁓
My numbness has gone away. But even when I first had it, I remember I was at the spawning, the rehab center here. And I had to to the bathroom. I had pee really bad. So I called the nurse. She didn’t answer. like, the bathroom’s right there. I’ll go. I got out of the bed. All the alarms sounded off. I’m like, look around. And she comes running. And she’s like, you can’t get out of bed.
I just have to go to the bathroom. She’s like, you can’t get out that way. Why? Right at that moment I almost fell. I’m like, mmm. So I was like, okay, can you take me to the restroom? But I didn’t know I couldn’t walk there. I didn’t know.
Bill Gasiamis (56:38)
Yeah.
I woke up from brain surgery and they said, have you gone to the toilet? And I said, no. Okay. Well, let me help you go to the toilet. That’s one thing they want you to do as soon as you can. I went out, I got out of the bed on my left side, went to put my leg on the ground. There was this little nurse, Asian lady, really ⁓ small framed. I’m probably about two foot taller than her. And she goes, just put your arm around me and I’ll hold you and you’ll be fine. Well.
I put my arm around her, I held her and I just fell to the ground. We’re talking hours after brain surgery. And that’s the first time I realized that I couldn’t walk. And then I needed to go to the toilet a couple of days later and I pressed the buzzer and the nurses wouldn’t come because they were busy. And I tried to get myself out of bed into the wheelchair and they caught me while I was in the wheelchair, dragging myself to the toilet.
Trisha Lyn Winski (57:10)
Ugh.
my God.
Bill Gasiamis (57:36)
And they said, you can’t do that. I said, ⁓ well, if, if I, if I don’t do this, I’m going to shit myself. I need, I need to do this. And then they said, ⁓ and then they said, well, we have to help you. And I said, cool. Help me. They put me on the toilet and then they wouldn’t leave the room. And I was like, you have to leave the room. I’m not doing this with you in here. You’ve got to leave the room. And I said, we’re not allowed to leave the room. And I know how I made them stand outside the toilet door.
Trisha Lyn Winski (57:42)
Yeah.
me too.
⁓ that’s so funny.
Peace out.
Bill Gasiamis (58:06)
And I swear to God, I’m not going to move and do anything else other than what I have to do in privacy. When I’m done, I’ll let you know. But right now you’ve got to be outside. And they stayed outside. It was chaos.
Trisha Lyn Winski (58:17)
Yeah, the same
thing. So I had a wheelchair. At first it was right beside my bed so I could put my hand on it and climb down there. But they were smart. They put it on the other of the room. I’m like, I can get over there to get that wheelchair. So I’m like, I can walk. I can walk there. Yeah, so I didn’t walk after that. Yeah. But they were smart.
Bill Gasiamis (58:45)
And I wasn’t blaming them. didn’t want to blame them. I just said to them, sorry guys, like, I know you’re busy. couldn’t wait though. I had just had to go, you know, so that’s what I did. I went and you know, it wasn’t the smartest move, but my self preservation from the embarrassment of, know, swelling my pants was going to be the, my biggest issue apparently, you that was going to be the biggest problem in my life. So you’ve,
Trisha Lyn Winski (58:47)
Yeah.
Yeah.
Bill Gasiamis (59:11)
Have you had some friends that have rallied around you and kind of helped you get through this? Or have you trying to be, have you been independent and done it all yourself? It seems like you’re a little kind of independent.
Emotional Impact on Loved OnesTrisha Lyn Winski (59:22)
Yeah, I’m definitely independent, I I have. So when I had the stroke, um, I had like 12 people at the hospital before I was even in for surgery. Um, so I had some really good friends. Um, but even still, like, I just, I’m so used to doing things by myself. I am so used to it. I just, I, I got, I got mad when I, when I can’t do it myself and they help me. like, don’t.
don’t push my sentences, let me talk myself. Eventually I got past it. ⁓ But sometimes it gets frustrating. My friends were like, big support system. Yeah, they were.
Bill Gasiamis (1:00:07)
Yeah, did that help you get?
Trisha Lyn Winski (1:00:07)
My
son and Jason are like, I think they’re kind of traumatized by it.
Bill Gasiamis (1:00:17)
Yeah, 100%.
Trisha Lyn Winski (1:00:18)
And
that’s why I’m like, I had the stroke. Why are you traumatized? I forget that. I just don’t look at from their perspective. ⁓
They watched me have a stroke.
Bill Gasiamis (1:00:31)
Yeah. That’s tough for a son to watch ⁓ anyone they love have a stroke, right? But also your ex, even coming across a stranger that’s having a bad health situation, like even that’s tough, right? And
Trisha Lyn Winski (1:00:50)
It’s tough.
Bill Gasiamis (1:00:51)
And you guys were married at one point, you guys have a son together, like you’re, you know, your friends, you’re close. And it’s like, what does that mean for this person that even though you guys aren’t in a relationship like you were, like there’s a level of respect and love there still. It’s like, what does this mean for that person? What does it mean for my son? Who’s mom’s unwell? Like there’s a whole bunch of things that, you know,
Trisha Lyn Winski (1:01:18)
Yeah.
Bill Gasiamis (1:01:19)
come into it, they do get traumatized.
Trisha Lyn Winski (1:01:21)
And
the first day, I remember I told you, I remember seeing like a few people, but Jason and Zach and his brother Connor, who I love too, but they can, I couldn’t really talk to them, but.
They were all crying and Zach was really crying. Actually Zach and Jason both were. It makes me feel bad because I couldn’t like… I put my arm out to… I was trying to tap him. I was saying, it’s okay, it’s okay. But I couldn’t say that. So I just like put my arm out. It makes me feel bad now that I think about that. I know that they were traumatized. I know they were.
I just didn’t realize until right now.
Bill Gasiamis (1:02:10)
Yeah, you didn’t do it to them. It just happens. That’s what happens when somebody says someone who they love be unwell. You know, if you think about what you went through with your parents, you know, when things go wrong with your parents, you know, it’s, it hurts you too. It’s not just the person who you love that’s going through it. You go through it together. ⁓ it’s such a
Trisha Lyn Winski (1:02:13)
I know.
No.
Yeah.
Bill Gasiamis (1:02:33)
It’s such a difficult thing. And I’m like you. I was trying to make everyone else around me feel calm and okay. And yeah, not freak out. Yeah, that’s what I was doing most of the time.
Trisha Lyn Winski (1:02:40)
All day here.
all day.
Yeah, that’s actually what I was doing too. Most times that I was at Spodding, I honestly like, I had a million people coming in there to see me. It was really humbling now. But at the time I was like, I just want to be alone. And I was, was, I’ve met myself the first day. I never forget it. I cried and cried and didn’t want to go there when I told you I wanted Zach to take me home.
Um, and she gave me this like this iPad and she said, this is an English assignment. See how much you can do this. I’m like, I can do it. I couldn’t do it all. I couldn’t. It was, it was, I know I can do it, but it was like such easy English. I, I threw the iPad. I’m like, just get out, get out. And that was the first day I was there. Like, she wants to kill me. But in the end, like she came back in the next day. She’s like, it’s you’re fine.
just so you know you’re fine like I just threw your iPad by the way I broke the iPad but yeah but but she said I was I was fine but in all reality that was like that was the worst for me I couldn’t like tie my shoes I couldn’t like I couldn’t do anything I I thought I could do
Bill Gasiamis (1:04:05)
You know what’s weird is most, a lot of stroke survivors, right? Not just you, don’t know how you tie your shoes, but you know how to be upset and frustrated at yourself. how, how is that a thing man? Like if we can, if a stroke causes something, you know, why can’t it just stop you from knowing how to be frustrated with yourself? Like.
Trisha Lyn Winski (1:04:13)
All day. All day! That’s so true. ⁓
That’s so true. the first week, I had room with a view, but I would count how many cars it took to get to the place on the ridge. like, this is fucking crazy. This is what I’m doing. This is what my life has become. I’m just counting how long it takes to to the bridge. like, now every time I go past it on the highway, I look at it and I’m like, I don’t even want to see it.
It’s funny, it’s not funny, but…
Navigating Life ChangesBill Gasiamis (1:04:57)
I know what you mean, like little things become ways to occupy your mind and ways to through whatever you’re going through to distract you from all the stuff that’s going on, all the drama. Yeah.
Trisha Lyn Winski (1:05:02)
Yeah.
Yeah, all that
the stuff you do there was like crazy, but in the in reality, that’s what I had to do. So I know that they were I know they’re doing our thing. ⁓ But the time like, you do physical therapy, you have to do occupational and really like, can I just go sleep? I want to sleep all day. So that at times people come to see me with busy hours from I think from four to eight. And
I was in one of the therapies always until like five or six. So when they came in room, I was ready for bed. One day I said, I yawned. I said, night night. This is I could say. said, night night, night night, night night. I said like that, my mom was like, are you tired? I’m like, yes. I was so tired. And she laughed. like, it’s funny now I laugh, like.
I said, night night, night night. Yeah, I was totally wiped out. I think that was the first week.
Bill Gasiamis (1:06:09)
You’re on your wiped out. Yeah. Yeah.
Yeah. I understand what that’s like. I remember being wiped out, just doing a few steps in rehab. ⁓ when I was doing occupational therapy in that, and then being wiped out for the whole day. it’s like, guys, I don’t want to do anything else, but, ⁓ yeah, rehab is hard, but not rehabbing is potentially making life harder anyway. So you have to do.
Trisha Lyn Winski (1:06:27)
yeah.
Bill Gasiamis (1:06:39)
the rehab and it took me a month to sort of start getting comfortable with the three, four sessions of rehab. ⁓ Yeah. Every day. Whereas at the beginning it was one was enough like guys half an hour I’m ⁓ and thinking about walking and thinking about where your leg is going to go and thinking about your arm and everything too much thinking.
Trisha Lyn Winski (1:06:46)
Every day. Every day.
Yep.
Yeah, so it, I think the first week I was at the hospital, I don’t know why, but I did find out later. I sang like two different songs. Mind you, I didn’t sing them. I said it out loud. And the one song that I hate this song, I hate this song now. I hate this song back then. In general, I hate song. And I said, my milkshake brings all the boys to yard. That’s it. And my friend, Roderick, was like, what?
I was like, my milkshake word is all boys yard. I was like, it didn’t dawn on me that that was a song. And I was saying a part of it. And it turned out that the spot my brain is, is well, then it was, it was dead to the, I think the verse of the songs, but it knew the words. So it said out loud, did that song. did, um, no diggity, no doubt. I say no diggity, no doubt.
over and over and over again. They got me started, so no digging it out.
Bill Gasiamis (1:08:02)
That’s crazy. Of all the things to remember, my milkshake brings all the boys to the yard.
Trisha Lyn Winski (1:08:03)
I know. Yeah,
that’s all I said.
That’s embarrassing,
Bill Gasiamis (1:08:09)
That’s so embarrassing and funny at the same time. It’s a really good story. love it. ⁓ Looking back, right? You’ve definitely changed in many different ways. Like how have you changed? Not just physically, not just, ⁓ you know.
Trisha Lyn Winski (1:08:13)
Yeah.
order.
Bill Gasiamis (1:08:28)
Not just sort of noticing what you can and can’t do anymore, but also emotionally and mentally. Where are you at with the, I know you get emotional, but I still get emotional when I talk about my stroke in the right place. So what’s the emotional and mental kind of recovery like for you?
Trisha Lyn Winski (1:08:43)
The emotion like, so the part of my brain that has a problem dealing with emotions. So I get emotional whenever I’m not upset. I’ll be crying. I don’t even really I’m crying. And somebody says that you’re crying like, huh? ⁓ I feel that’s when I know I’m crying. But it totally like, it changed my life. Like some good, some bad, but it changed my life. I just have to
goes a lot slower. I told you that earlier. I do have to go a lot lot slower. But it changed my leg. I don’t know. I don’t know. It just changed. It changed it. don’t know how. Yeah, I can’t like put that down. But I know this weird thing. But now I can cook. I couldn’t cook to save my life. And mind you, my mom died in November and she was a really good cook.
Bill Gasiamis (1:09:23)
It just changed.
Trisha Lyn Winski (1:09:40)
So I think after she died, just picked it up. I made stuffed lasagna and bread with it. I don’t even know how I made that, but I did it. It was really good. I don’t know. I know.
Bill Gasiamis (1:09:56)
All right.
That’s a win. Why not? We’ll just take it. I love it. ⁓
Trisha Lyn Winski (1:10:02)
Yeah. Yeah, I do love those
moments, but yeah, I just don’t like, I don’t want to. So sometimes I go out, I get tired or, or about, yeah, I go out have like, most I have is two drinks ever. This is, I don’t know why this happened to me, but like, before I could drink a lot, not a lot, but a lot for me. Um, but now like I have like two drinks. like, I’m done. Like,
I don’t think I’m drunk, but I just think that I just can’t have anymore.
Bill Gasiamis (1:10:34)
Yeah. You know, I’ve stopped drinking. I haven’t had more than about 20 drinks in 10 years. It makes me feel like I’m having another stroke. That’s why I don’t do it.
Trisha Lyn Winski (1:10:39)
Wow, that’s good. I need to do that, but I don’t do that yet.
I wouldn’t do it in that case either. Yeah. I think that’s a way I cope with it actually. I go all by myself all the time.
Bill Gasiamis (1:11:03)
Okay, so you reckon the drinking kind of helps take the edge off every so often if you’re feeling down on something.
Trisha Lyn Winski (1:11:06)
Yeah.
Yeah. And I think that somebody, if I can talk to somebody and they want to hear my stroke, ⁓ I’d gladly tell them that. But Zach and Jason and every I know, I can’t like talk to them about it because like, yeah, it’s frustrating.
Bill Gasiamis (1:11:25)
Great.
Yeah. Because also you have a conversation with them. That’s different. Like it’s not a you and me talking about stroke. I don’t have to come in and step in and go, worry about you. I don’t have to say, you know, but mom, this or Patricia, that like, I don’t have to do any of that stuff. You know, we just have a talk. We share our conversation. You get it off your chest. I’ll get mine off my chest. But then you’re talking to the family and the family then they’re not as
disconnected from it. And therefore it goes the way family conversations go when somebody has been unwell. And I’m the same like with my wife. think that’s why the podcast exists because I’m here. I am 14 years later, still talking about the stroke every week on the podcast. My wife doesn’t need to have that many conversations about what happened to me. It’s just.
Trisha Lyn Winski (1:12:14)
was crazy.
Yeah. Yeah. ⁓
Bill Gasiamis (1:12:22)
She doesn’t need it. She physically,
emotionally, mentally does it every so often. I say to her, no, I’m screwed. And she’ll say, you know, what’s wrong with you again today? And I’ll say, you remember I had a stroke 14 years ago, every so often I say it just because I need to say it. And then she goes, Oh yeah. Okay. I get it. Um, and then, and then they can get off my case when they’re being, um, when they’re giving me a hard time for being, um, moody or
Trisha Lyn Winski (1:12:51)
Yeah.
Bill Gasiamis (1:12:51)
nasty
or whatever and then and then we’re okay but we don’t have deep and meaningful conversations about it anymore there’s no point because she can’t change anything she’s not the right person for that a therapist is for me if I need to if I need to and if I and if I can’t see a therapist another podcast guest is my therapy like it’s
Finding Joy in New PassionsTrisha Lyn Winski (1:13:12)
It totally is. when I first had a stroke, whenever I go out with whoever I out with, I told them I had a stroke. Mind you, I didn’t want to tell them I had a stroke, but I couldn’t tell them I had aphasia. I think they’re not going to understand, what that is. So I have a stroke that way I can say I have aphasia, blah, I tell them that because they give me time to let it out, get what I’m trying say out.
That’s a big deal for me. And so I think that when I did that at first, it kind of bothered some people. like, listen, I’m going to do it whether you’re with or not. I do it because I need to do it. I have to do it. It’s not because I give two shits what anybody thinks about me having a stroke, but it’s about aphasia. I can talk if they let me get it out. So I think that now everyone’s OK with it. But at first, they’re like, what the fuck? I’m like, yeah.
Bill Gasiamis (1:14:08)
The learning how to interact with somebody who’s had a stroke and has aphasia is a big task as well. My wife, even a few times said, spit it out. I’m like, dude, spit it out. Be careful what you’re saying. You know, like, and I know she wasn’t being nasty or mean. She just thought I was, ⁓ delaying the conversation or whatever, you know, I’m all being distracted or whatever. And I’m like,
Trisha Lyn Winski (1:14:15)
Yes.
Yeah.
Yeah.
Bill Gasiamis (1:14:37)
just bloody wait, shut up, be patient and wait, know, like, you know, and we, we, we’re there now and we understand each other. But early on, was her learning that like you, my brain, my brain doesn’t work. ⁓ and my mouth unconnected like they were before.
Trisha Lyn Winski (1:14:59)
Yeah.
Bill Gasiamis (1:15:01)
I don’t know if it’ll come better or not, but right now it’s not. So just wait, just don’t say anything for three seconds. It’s your problem. If you can’t handle, ⁓ three seconds of, ⁓ dead air time, it’s not my problem. Just stop.
Trisha Lyn Winski (1:15:17)
So when I first had it and I got out, I went to this Chinese restaurant with a bunch of my girlfriends. And I didn’t know I said to my friend Jill, I said, when you come back up here, can you give me the shirt that you wore mind to homecoming?
Two things I’ve been home kind since I was in high school. So is it 23 up in some years and I looked at my I said that and she’s like, yeah, It it it just like makes me laugh and that’s I was then now like like I said it but I said it I Did
Bill Gasiamis (1:15:54)
Yeah.
The brain, the brain is anyhow, people after stroke, ⁓ the same, but different, you know, things work differently. Things are rewiring things. Things are all over the place. You know, it takes a lot of time and a lot of healing. think I kind of hit my
Trisha Lyn Winski (1:16:05)
Yep.
Bill Gasiamis (1:16:12)
my best sort of recovery phase after the first seven or eight years, six, seven or eight years is kind of what I felt best about myself. It took a long time for me to get there. And I went back to work. know, 2012 was the first incident. didn’t go back to work until after 2019 in my own business, which is what I was doing before. And so it took seven years for me to get back into the swing of the routine and all that.
Trisha Lyn Winski (1:16:31)
Yeah.
Yeah.
Bill Gasiamis (1:16:38)
harder than it was then because I was dealing with the physical challenges, but it took a long time. So, ⁓ I think you’ll get there and I want to offer hope to people that, ⁓ early on in the recovery that things will continue to change and improve. ⁓ what, what do you like doing now? Like what’s your little, you know, what’s the, what are the things about your life that you kind of love to do that are making you feel good?
Trisha Lyn Winski (1:17:08)
So I’m really big into football. I’ve always, but it’s funny. Like, so when I was in spawning, so I’m a big stealer, Pittsburgh, Seattle, Fran. Yeah. So, they had to, do you go to the play, the, the play house? Well, to go to the play house, they had to be, they had to win and we had other, three other teams like win and lose. So.
Bill Gasiamis (1:17:18)
Deal with it. Okay.
Super Bowl.
Trisha Lyn Winski (1:17:34)
In Spoding, I was watching on my phone, she had the TV on, she had an iPad that she had it on, and I was watching all three of them and she looked at me and she’s like, you have not changed at all. I’m like, what do mean? It’s because I was doing that and she kind of laughed at me, but it’s kind of true. I still like the same thing. I still like, I love the way they play pool. I was really good at pool. I was really good. I can’t.
shoot as good as I used to shoot before, but I can still shoot. I went out with Zap one time and I beat him and he’s like, how the hell did you beat me? like, I don’t know. I like a game, but it’s not that I was so good at a pool. don’t, again, I don’t shoot as good I did, but yeah.
Bill Gasiamis (1:18:24)
You like doing activities like that?
Trisha Lyn Winski (1:18:27)
Yeah, I do.
Bill Gasiamis (1:18:28)
That’s cool. Why not? love it. you know, with the way that the, the grid iron works in the United States, if your team doesn’t get to the super bowl, like, it really depressing? Because I know you guys have separate, like there’s a, there’s a, there’s two different divisions and then.
Trisha Lyn Winski (1:18:44)
Yes.
There’s two divisions. Yep. And there’s four divisions.
There’s two divisions and there’s four, I can’t remember the call, but in each division.
Bill Gasiamis (1:19:04)
Okay, so each division is split up into four. Okay, so to get to the top of your division, do you have to have playoffs against the other four?
Trisha Lyn Winski (1:19:14)
Yeah, you have to play have playoff against only so my my conference conference that was insane. There’s two conferences, AFC and NFC. So AFC the Steelers are in. So they have to be not all a team. They have a playoff that they have to go through. But then once they get through that, then they play the NFC in the Super Bowl.
Bill Gasiamis (1:19:34)
Wow. Okay. So they’ve got to get through their own division. They’ve got to then be the top of the NFC and then they’ve got to play off in the Superbowl to potentially win the Superbowl. So it is a massive big deal to make it and win a Superbowl. Massive.
Trisha Lyn Winski (1:19:51)
Yeah,
so Pittsburgh has, we’re tied right now with the paths and it makes me effing mad because I live in Boston and like, so we’re tied with them now, but ⁓ I like to say we have more than they do, but it doesn’t matter. So we’re tied.
Bill Gasiamis (1:20:10)
Yeah, okay. I hear more Super Bowls. So you, I just Googled it the last time the Steelers won the Super Bowl was in 2009.
Trisha Lyn Winski (1:20:19)
And I was at that game. It was so much fun. ⁓ God, it was so much fun. San Antonio Homes caught the ball in the end zone. It’s the most amazing catch. Watch it. Watch it. He’s amazing.
Bill Gasiamis (1:20:32)
Yeah. Okay.
I’ll check it out. I love ⁓ big games, you know, where two really good teams go against each other and your team just gets over the line. Like, I love that you never ever forget it for the positive, but then the other team never forget it because of the negative.
Trisha Lyn Winski (1:20:43)
Yeah.
We played
against, that’s not the last time we were in a secret role. played in a secret role. 2009, we won. think we played in 2011 or 12 and we lost to Green Bay. I went to that game too and I was, yeah, I was mad. But we lost.
Bill Gasiamis (1:21:06)
My team
in Australia in Australian football has been equaled 16 championships since they’ve been around, which is like for 110 years or something. And they’ve lost the most championships though. Yeah. So they’ve been in the most they’ve won almost the most, but they’ve lost more than any other team.
Trisha Lyn Winski (1:21:21)
Really?
I don’t
know how many we lost. bet we’re up there. No, no, I don’t think we’re up there, but…
Bill Gasiamis (1:21:34)
Yeah. So we’ve seen a lot of heartache in those years where so many losses I’ve probably seen about, I reckon I’ve seen maybe seven or eight losses in a, yeah. And, in the gridiron when I was a kid, probably my twenties and my teens, I used to follow, you’re going to know exactly what, what, what I’m getting at now.
Trisha Lyn Winski (1:21:37)
Yeah.
Bill Gasiamis (1:21:59)
I used to follow Buffalo Bills because my name’s Bill. I used to follow the Buffalo Bills. But how many did they lose in a row in the nineties?
Trisha Lyn Winski (1:22:04)
I do like buffalo meals.
They’ve never been to the sea,
Bill Gasiamis (1:22:12)
Yeah, they’ve been to the super bowl. They’ve lost. Yeah. I’ll Google now. I’ll tell you how many, how many they lost. How many, Oh man. In a row to super bowls did Buffalo lose.
Trisha Lyn Winski (1:22:20)
It could be that many.
I don’t
think they did it to their super elf. Maybe I’m wrong.
Bill Gasiamis (1:22:32)
Okay.
In 1991, they lost to the Giants 20 to 19. In 1992, they lost to Washington 37 to 24. In 1993, they lost to the Dallas Cowboys 52 to 17. And in 1992, they lost to Dallas Cowboys 30 to 13.
Trisha Lyn Winski (1:22:38)
So.
Okay.
So they haven’t been there since then, right?
Bill Gasiamis (1:23:00)
Uh, I believe so. And they’ve lost four in a row, 91, 92, 93, 94. I still have a hat and everything.
Trisha Lyn Winski (1:23:06)
my god.
So I think that’s what I’m thinking of. I don’t think they’ve ever won a Super Bowl. But they haven’t been there in last couple of years, and it really should have been. And I was rooting for them to win. I root for a seal all day. I don’t care, all day. But when they were out, I was hoping that they won, but they didn’t.
Bill Gasiamis (1:23:30)
Yeah.
The zero from zero from four attempts and it was all in zero wins from four attempts at the super bowl and they’ve lost the four in a row. Yeah. It was devastating to be a Buffalo Bills fan then, but it is what it is. So as we wrap up, I’d love to ask you one last question, especially about somebody who might be listening to this interview. Who’s just going through it really early on. Like what would you say to them about
Trisha Lyn Winski (1:23:35)
What?
⁓
Yeah.
Bill Gasiamis (1:24:00)
the journey about what you’ve learned about stroke in general or life. Like do you have some words of wisdom?
Trisha Lyn Winski (1:24:08)
I think that like you just have to be patient with yourself and be patient in general because in the end like so I went neuroplasticity it really does exist. I’m telling you like my brain like I find places to find the words I never had before. It takes longer for them to get there but it gets there. So I was speaking really bad when I first had it. I speak a lot better now. Just give yourself time.
I know my back to work, I shouldn’t have, but I really like to work. All these little things I did, I shouldn’t have, but I did. It taught me that if I ever had again, I won’t do that. I have to just take my time and do it myself. I feel like, well, I get young too, so it’s hard to say what I would do, but yeah, I just gotta take my time. I have to.
Bill Gasiamis (1:25:04)
I love it, Trisha. Thank you so much for reaching out, staying up so late to be with me on the podcast. really appreciate it. was great to chat to you.
Trisha’s Journey: Emotional Anger After StrokeBill Gasiamis (1:25:12)
Well, what a wonderful conversation. Trisha was 46 years old, no risk factors, a carotid web she never knew she had and a stroke that changed everything in an instant. What stayed with me most was her honesty about the anger, not knowing who she’s mad at, just being mad. The aphasia that frustrates her more than any physical deficit. The moment she realized her son and ex-husband were traumatized.
and that she’d forgotten to look at it from their perspective. And her reminder that at the end, the neural plasticity is real. The brain is still finding new pathways. Give it time. If this episode resonated with you, please share it with someone who needs to hear it and subscribe so you never miss a story like Trisha’s. A huge thank you to my Patreon supporters. You are the reason that helps this podcast keep going.
and stays free for every stroke survivor who needs it. A special welcome to those who have joined us recently. Thank you so much. It genuinely means the world to me
you’re in recovery and feeling that anger, that confusion and that sense of why me, I wrote about all of it. It’s called The Unexpected Way That a Stroke Became the Best Thing That Happened. It is available at recoveryafterstroke.com/book. I’m Bill Gassiamas. Thank you for listening to the Recovery After Stroke podcast. I will see you in the next episode.
The post Emotional Anger After Stroke: Trisha Winski’s Story of a Carotid Web, Aphasia, and Learning to Slow Down appeared first on Recovery After Stroke.
Return to Work After Stroke: How Marco Calabi Rebuilt His Career, His Purpose, and His LifeAt 47 years old, Marco Calabi was a DevOps engineer living in Italy – someone who spent his days automating systems, solving complex problems, and helping companies stop wasting time on repetitive tasks. He was healthy, working, paying bills, and spending time with friends. Life was normal.
Then, without warning, everything changed.
A small hole between the two chambers of Marco’s heart, a condition known as Patent Foramen Ovale, or PFO, had allowed blood flows to mix. A clot formed. It travelled to his brain. By the time his partner and sister realised something was terribly wrong, Marco was moving his arm involuntarily, unaware of what was happening to his own body.
The emergency services were called twice. The second time, they came.
Marco underwent eight hours of brain surgery. He was placed in a medically induced coma to allow his brain to rest. When he finally opened his eyes, he was on a hospital bed, and the road back had only just begun.
The Reality of Stroke at 47Marco woke from surgery to find the right side of his body had been affected. His arm, hand, and leg were weak. His speech was impaired. He left the hospital in a wheelchair.
For many stroke survivors, this is the moment that defines everything that follows, not the stroke itself, but the first honest look at what recovery is actually going to require.
“In the beginning, I was helped in everything,” Marco recalls. “They prepared my lunch. They helped me go to the bathroom. My family never left me alone.”
His mother, his partner, his sister, and a close friend in the Netherlands all rallied around him. At home, physiotherapists and local health professionals visited him directly, a level of care he describes as incredible. Step by step, he began to reclaim his independence. First, the bathroom. Then the kitchen. Then the stairs. Each small act of autonomy arrived with a feeling he hadn’t expected: power.
“You feel good because you think you have power again,” he says. “It is a very important moment.”
Return to Work After Stroke: Why It MattersFor working-age stroke survivors, the question of whether they can return to work after stroke is one of the most pressing they face. Identity, purpose, financial security, and routine work carry all of these things, and a stroke threatens all of them at once.
For Marco, returning to work wasn’t just a financial necessity. It was evidence that his life still had forward momentum.
He went back to his role as a DevOps and Site Reliability Engineer, initially working six hours a day instead of eight. The work itself, automating processes and improving systems, remained the same. Only the pace had changed.
“I do the same things, but with different speeds,” he says simply.
That shift in pace is something many stroke survivors recognise. Recovery doesn’t demand perfection. It demands persistence.
| “The right moment is now. Not after, not tomorrow, not next week. Now.”— Marco Calabi |
Recovery Happens in StepsOne of the most grounded things Marco shares is this: recovery cannot be rushed.
“The experience is made of steps,” he says. “You must live every step. The first steps are physical. And then your mind changes. But you must let yourself be.”
This is the part that rarely gets talked about openly. The pressure to recover quickly — to prove to yourself, your family, and your employer that you are still capable — can work against the very process you are trying to complete. Marco’s advice is to resist the urge to skip ahead. Physical recovery comes first. Mental and emotional transformation follows naturally from there.
Trying to rush past the physical phase doesn’t speed up recovery. It disrupts it.
The Book, the Purpose, and the ShiftDeep into his recovery, Marco did something unexpected. He wrote a book.
Cambio di Vita, translated into English as Life Change: To Hell and Back, is his account of what happened, what he felt, and what he learned. Available on Amazon in digital and paperback.
Writing started as a personal exercise. Somewhere in the process, its purpose shifted.
“I said, my story is useless in this moment. I can make something,” Marco explains. “And so the book has another meaning to share.”
For a man who had always found purpose through his career, the stroke opened an unexpected door. Helping others became a new calling. Speaking engagements, podcasts, and community conversations, Marco has built a new layer of meaning onto the life he already had.
His best friend told him he had become wiser. His own reflection on what changed is striking: “Heartlessness is useless. You reach the hearts of people with softness.”
What Stroke Taught Him About LifePerhaps the most powerful thing about Marco’s story is not what he lost, but what he found.
He found that the right moment is always now, not when conditions are perfect, not when recovery is complete, but right now, with whatever capacity you currently have.
He found that family and friends matter more than most of us acknowledge until we truly need them.
He found that purpose doesn’t require a perfect body or a full working week. It requires a decision.
If you are navigating life after stroke, wondering whether you can return to work, rebuild your identity, or find meaning in what remains, Marco’s story is proof that it is possible. Not easy. Not fast. But absolutely possible.
???? If you are rebuilding your life after stroke and want a guide for the journey ahead, Bill’s book The Unexpected Way That a Brain Injury Can Change Your Life is waiting for you at recoveryafterstroke.com/book.
If this podcast has supported you, consider supporting it back at Patreon. Your contribution keeps this community growing.
FAQ: Return to Work After StrokeCan you return to work after a stroke?Yes, many stroke survivors do return to work, though the timeline and capacity vary depending on the severity of the stroke, the type of work, and individual recovery. Marco Calabi returned to his role as a DevOps engineer, initially working six hours a day instead of eight. The key is a gradual, supported transition.
How long does it take to return to work after a stroke?Recovery timelines vary widely. Some survivors return within weeks; others need months or years. Factors include the type and severity of stroke, the physical and cognitive demands of the job, and the quality of rehabilitation support. There is no universal timeline. Patience and persistence matter more than speed.
What can I expect when returning to work after a stroke?Many survivors return at reduced hours or modified duties. Adjustments to pace, task complexity, or physical demands are common. Open communication with employers and occupational therapists can help structure a gradual, sustainable return. Marco worked six-hour days and describes it simply: “I do the same things, but with different speeds.”
Does returning to work help stroke recovery?For many survivors, returning to work contributes positively to recovery, providing routine, purpose, social connection, and a sense of forward momentum. Marco Calabi describes his return to work as evidence that life still had forward momentum. However, the timing must be right, and the transition should be gradual.
What if I can’t return to my previous job after a stroke?Some survivors find that stroke opens doors to new kinds of purpose volunteering, writing, advocacy, or a different career direction. Marco Calabi used his recovery to write a book and speak to others about life after stroke. The key is finding what gives you meaning, even if it looks different from before. For more guidance on rebuilding life after stroke, visit recoveryafterstroke.com/book.
This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
Marco Calabi — From Induced Coma to Back at Work: A Stroke Survivor’s Honest Recovery StoryAt 47, Marco Calabi had a stroke caused by a hole in his heart. Today he’s back at work, has written a book, and is helping others go on.
Marco’s Facebook
Marco’s Instagram
Marco’s Book: Life Change
Highlights:
00:00 Introduction: Return to Work After Stroke
02:27 Life Before and After the Stroke
05:23 Health Awareness and Stroke Causes
09:22 The Day of the Stroke
15:02 Writing the book “Life Change: To Hell and Back”
27:51 The Importance of Support During Recovery
33:15 Gaining Autonomy and Finding Purpose
39:14 The Power of Mindset in Recovery
43:24 Life Lessons Learned Post-Stroke
47:24 Inspiring Others Through Personal Experience
Transcript:
Introduction: Return to Work After Stroke
Bill Gasiamis (00:00)
what kind of things is okay to complain about? Like in Italy, if the pasta is not cooked al dente, you must complain.
Marco Calabi (00:07)
Okay, yeah. Okay, yes, yes.
Bill Gasiamis (00:08)
you
Marco Calabi (00:13)
Okay, but you complain, you learn to complain about very important things.
Bill Gasiamis (00:24)
Hello everyone and welcome to the recovery after stroke podcast. Before we get into today’s episode, I want to tell you about a tool I’ve been using and genuinely love turn to.ai. If you’ve ever tried to keep up with the latest stroke research, you’ll know how overwhelming it can be. There are literally 800 new things published every single week about stroke research papers, patient discussions, expert comments, clinical trials, events. Nobody has time to read all of that.
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Speaking of resources, if you’re rebuilding your life after stroke and want a roadmap for what comes next, my book, The Unexpected Way That a Stroke Became the Best Thing to Happen is available at recoveryafterstroke.com/book. It’s written from experience, my own and other stroke survivors. And I hope it helps you the way writing it helped me. And to everyone supporting the show Patreon, thank you genuinely.
This is not possible without you.
Now today’s guest is Marco Calabi, a DevOps engineer from Italy who had a stroke at 47 caused by a hole in his heart. He went through eight hours of brain surgery, wake up from a medically induced coma, left hospital in a wheelchair
and went on to return to work, write a book, and find a new sense of purpose.
This is a remarkable conversation. Let’s get into it.
Bill Gasiamis (02:18)
Marco Calabi welcome to the podcast
Marco Calabi (02:21)
Yes, I’m ready and thank you for your invitation.
Life Before and After the Stroke
Bill Gasiamis (02:27)
Tell me a little bit about what your life was like before you had the stroke.
Marco Calabi (02:33)
Yes, before my stroke, my life was normal, I say. Working, paying bills, going outside with friends and so on. After the stroke, everything changed because…
Bill Gasiamis (02:53)
Yeah. Did you have a,
what kind of work did you do before the stroke?
Marco Calabi (02:58)
Before the stroke, even after the stroke, I work ⁓ in computer science field. I’m a DevOps engineer. And after the stroke, I work a little less. Six hours, I can do eight hours before the stroke. But I do the same things.
I do normal things. project something about I’m very, very, very vertical in this moment. I work in a site, the reliability engineer field. my aim is to help this system to service.
to automate things. And I’m like a robot. I like a robot.
Bill Gasiamis (04:05)
to automate.
To automate things. So, okay, to automate manual processes or something like that.
Marco Calabi (04:10)
⁓ so pretty.
Yes, yes, I try
to automate everything because the people, the company now try to avoid to make the people to repeating things. because you want people…
make more important things and the repeating things are not very important. in my opinion, diminishing view of the work. And I try to make the things better in some way.
before the soak and even after the soak. I do the same things but with different speeds.
Health Awareness and Stroke CausesBill Gasiamis (05:23)
Yeah. With you regards to your health, how did you view your health before the stroke? Did you think you were healthy? Did you think you were well, or was there some things that you were dealing with that were related to the stroke that occurred?
Marco Calabi (05:38)
Yes, before the stroke I was healthy, but I was very worried about my health because I found a lot of health problems in my body, but the problems were not there.
because after the stroke, I did understand I was healthy in that moment. And the stroke teached me to understand my health better. yes, yes, yes.
Bill Gasiamis (06:30)
You were heavy?
Marco Calabi (06:37)
because I went out from the hospital with wheelchair. And now I’m able to walk.
Bill Gasiamis (06:51)
Aha. So
were you overweight?
Marco Calabi (06:56)
No, no, I’m not. I had a stroke maybe because the doctors doesn’t know the motive. Perhaps, perhaps it was a genetic problem in my heart because of FOP, because a small
all between the two chambers in my heart. And the mixing of the two flow bloods makes problems to the brain. And after the stroke, ⁓ the stroke happened. But I…
Bill Gasiamis (07:51)
Yeah, did they?
Did they find a hole in your heart?
Marco Calabi (07:55)
Yes, yes, and I was operated in my heart. Closing, yes, closing the hole because people suffer this common problem. But sometimes the problem is huge. A lot of people…
Bill Gasiamis (08:01)
to fix the hull.
⁓ huh.
Hmm.
Marco Calabi (08:25)
don’t suffer major problems. But sometimes it is very, very important. In my case, was very, very important because it created the mixing of the blood flows, created ⁓ a blood costrain.
to the brain and the platypus brain ⁓ created a stroke. It is the opinion of the doctors.
Bill Gasiamis (09:04)
on the
How old were
you at the time?
Marco Calabi (09:10)
I softened the stroke at 47 and now I’m 51 years old. Yes.
The Day of the StrokeBill Gasiamis (09:22)
41, 47 when the stroke happened. On the day of
the stroke, did you notice there was some, something wrong? Did you feel strange, feel different?
Marco Calabi (09:31)
Yes, during the stroke it was terrible because I did a lot. My mate called the emergency number and they thought it was a problem of annotation.
the neck. And my sister, because my brother called my sister, and my sister came into my house and she understood something was wrong, because I moved my arm in the air.
Bill Gasiamis (10:02)
Mm-hmm.
Marco Calabi (10:30)
And I had, sorry, because remembering these things makes me a little uncomfortable. yes, but okay. And my sister, together with my mate, decided to call again the Belgics.
and then they went to buy house and my story began.
Bill Gasiamis (11:14)
Hmm. So I’m going to go back for a moment and ask you about what just happened. You got uncomfortable. it emotional to talk about what happened to you sometimes?
Marco Calabi (11:23)
Yes, yes, yes,
because I know I never accepted this thing I’m living together with it but yes, because yes, yes, because I think
Bill Gasiamis (11:42)
Uh-huh. You haven’t accepted it yet.
Marco Calabi (11:52)
I will never accept this thing. But I try to go on. I try.
Bill Gasiamis (12:01)
Why?
Why do you think you won’t accept it? And is that helpful to not accept it?
Marco Calabi (12:08)
Because it is very hard to accept. Because it is not normal, in my opinion, to accept the bad things in life. ⁓ We must live together with them. Because…
because we must live and stop. But living gains understanding is very different. Yes.
Bill Gasiamis (12:48)
If you’ve chosen to live with it and
overcome the challenges that it gives, isn’t that a form of acceptance?
Marco Calabi (12:58)
Maybe. is, in my opinion, it is a form of acceptance. Because sooner or later I make something, I do something. And my father said it is useless to look through the ceiling.
And it is a big truth. It is useless. Your life is in your hands. And you in that moment, your life is a lot in your hands. And you must decide your future because
No people are able to help you. No other people, friends, family, relatives, and so on. You must do only with your strength and soul.
Bill Gasiamis (14:18)
Yeah. And to me, that sounds like acceptance. You have taken responsibility for the ⁓ recovery that you have to do. You’ve taken responsibility for your life. You’ve made steps to rehabilitate yourself, your emotions, your mental health. You wrote a book about what happened to you. And that sounds like you
have accepted a lot of what happened to you, even though perhaps what it sounds like you’re saying maybe, and you can correct me if I’m wrong, it sounds like you’re saying, ⁓ I’m not going to give up.
Writing the book “Life Change: To Hell and Back”
Marco Calabi (15:02)
Yes, yes, because I wrote a book because I followed a possible path because it was a path of recovering not only physical recovering but mainly mental recovery and writing the book
was very helpful for me. And I hope it is helpful for others. Because in the beginning, I wrote the book because I tried to tell my story. And then I said, my story is useless.
in this moment. I can make something. And so the book has another meaning. And because I want in this way to help, to share, to share. It is the right word.
to share my experience. Not to… to share. To share.
Bill Gasiamis (16:36)
Yeah. Life change to hell and back is the English title, but you wrote the book in Italian and then had it translated to English. Correct.
Marco Calabi (16:45)
Yes,
yes. In Italian, it is called Cambio di Vita. And in English, is ⁓ called Life Change. And to hell and back is the subtitle, because I went to tell.
it was an help for me and perhaps I come back to tell to share to the others what I saw and what I did feel and I hope this experience will help in some way other people.
Bill Gasiamis (17:17)
Mm-hmm.
Understand.
Your journey started after the second time the emergency services were called to your house. What happened after that? Did they come to your house and then they took you to hospital? Did they treat you at your house? What happened?
Marco Calabi (17:59)
No, no, the physiotherapist and the therapist went to my house because I was not able to go to the hospital again. And then Italian hospitals decided to come directly.
to my house and help me in my house. And so physiotherapists and local beauties, they were incredible. They were very, very professional and very, very helpful for me. Helped me to recover a little my body.
in my speech.
Bill Gasiamis (18:59)
Before the recovery, I just wanted to understand what happened when you were having the stroke, the day of the stroke. your sister called the emergency services a second time. Did they take you to hospital to understand what was wrong?
Marco Calabi (19:14)
Yes.
Yes,
and I was operated immediately because my brain started to grow. And then I was operated because they didn’t want to…
Bill Gasiamis (19:23)
huh.
Expand.
Marco Calabi (19:47)
to have to experience later problems. And they operated to me for eight hours. And then I was inducted with a comma.
because my brain needed to rest. And then I woke up on a bed looking around and seeing people. And I remember
I remembered a woman said, it is time to walk. And with a lot of difficulty, I started to walk. And then I was transferred to another hospital.
to specialize ⁓ in stroke recovering. And there I was there for two months.
Bill Gasiamis (21:10)
Mm-hmm.
And what were the deficits you needed to get rehabilitated from? Did you have problems with your body, with your limbs, with your, what was the problem?
Marco Calabi (21:27)
Problems
with the walk, problems with the speaker.
a problem to it because I was, I don’t know, it is visible. Yes, yes, because during the search they opened a hole. ⁓
Bill Gasiamis (21:47)
⁓ trick you trick you asked me
Marco Calabi (22:05)
And then the wall remains open for all of that time. And then I was eliminated from this wall. And one month later, the wall was…
All was closed.
Bill Gasiamis (22:36)
Okay, so you had the chocostomy in for a long time and ⁓ they removed the chocostomy, then the hole is there, takes a month to close.
Marco Calabi (22:39)
Yes. Yes.
Yes, yes,
yes. And my mate says it seems a cross. I don’t know, I don’t. Okay, Why not?
Bill Gasiamis (22:56)
It seems across. ⁓ Why not? Yeah. So,
so you had to also learn to walk again, which side of your body was impacted by the stroke, which one was it your left side or your right side that didn’t work.
Marco Calabi (23:14)
my
right side my right side my leg my arms my arms my hands and okay all the right side and ⁓ i am weaker to the right side and okay
Bill Gasiamis (23:16)
Mm-hmm.
Waker.
Marco Calabi (23:38)
In the beginning, I was not able to write. And then after a long, very long training, I am able to write again. Very, very slowly, but I am able.
Bill Gasiamis (24:00)
Mm hmm.
And when you were in hospital, what was the hardest part of the recovery for you? Did you, when you started walking again, what was that like?
Marco Calabi (24:14)
In the hospital, never stop, always on the wheelchair. And I stop when I come back home. But yes. No, no, no, no.
Bill Gasiamis (24:38)
You stood up when you came back home, but in rehabilitation, you didn’t stand up.
Marco Calabi (24:44)
very very sad. very very sad. ⁓ Above all in the transportation for example from the wheelchair to the bed or do an exercise bicycle maybe but stop stop stop.
⁓ I remembered sometimes they tried to make me walk on the stairs, very, very, very few stairs, and tried to make ⁓
me walk in corridors and stuff.
Bill Gasiamis (25:48)
Okay and your arm, your right arm, you couldn’t use it at the shoulder and the hand, is that what the problem was?
Marco Calabi (25:58)
Yeah, I can use it. I can use it. It is weaker. A little weaker. But I can use it in this moment. When I was in the hospital, my right arm had problems. Because ⁓
the mobility was limited. And after two months, I was able to move it freely. And now I’m able to move it again in every direction.
Bill Gasiamis (26:49)
Hmm. ⁓
Very good.
When you came home from hospital, who was at home with you? Were you living alone or did you have some family with you?
Marco Calabi (26:58)
No, no, no, with my family, with my sister and with my mate because my sister and my mate never leave me alone. Leave me alone. they encouraged me. Thanks God because… ⁓
I think in this moment, family, friends, relatives, mates are very, very important. Above all, in this moment.
Bill Gasiamis (27:44)
Was there somebody that helped guide you through the recovery? Someone that stepped up and you had a lot of support from?
The Importance of Support During Recovery
Marco Calabi (27:51)
My
Yes, my friends. Above all, one of my friends who lives in the Netherlands because he was very worried about my health. And my bait talked to him to synchronize
him about my condition and after and when I went back home he was very very very present and he was very very he was a very good friend.
Bill Gasiamis (28:52)
understand. So he came, supported you, was very present when you came back home. Yeah.
Marco Calabi (29:00)
Yes, yes, yes.
Above all, my mom, my sister, my baby, obviously, my friends. Because in this moment, it is a moment you understand very well the friends.
more close in the friends
maybe, ⁓ maybe are fearful of your situation.
Bill Gasiamis (29:44)
Yes, yes, very much. Lots of people get fearful ⁓ when somebody they know how to stroke, they don’t know how to help and what to do.
Marco Calabi (29:53)
Yes, because I think it is natural. I understand it is natural because the first thing a friend, a person who knows you in things is what I can do.
And she is very fearful because the situation is huge. And I understand in this moment, in that moment, you understand very well the people. And you understand very well the quality.
Bill Gasiamis (30:39)
Yes.
Marco Calabi (30:46)
Yes, you are the same. You are the same.
Bill Gasiamis (30:47)
your friends.
Yeah, very common,
very common. Doesn’t matter if you live in Italy, America, Australia, experience is very similar. People have very similar ⁓ reporting about friendships.
Marco Calabi (30:59)
Yes, I don’t think
it is different from country to country because we are human being and stop and and stop. ⁓
Bill Gasiamis (31:08)
you
People are people.
What kind of things did you need help with at home? Could you go to the bathroom on your own? Could you eat on your own? What help was your family providing you?
Marco Calabi (31:28)
Yes, in the beginning I was helped in everything because they prepared my lunch, ⁓ they helped me to go to the bathroom, they
face outside the door, checking the situation. Okay, okay, okay. I understand, okay. And then, with time, I conquered my autonomy. Because, for example, going to the bathroom, cooking something.
Bill Gasiamis (31:58)
Thank God.
Thanks a lot.
Marco Calabi (32:22)
and doing my pet and so on. It is very important because in these moments you say to yourself, I’m able again.
My life is not useless. It is silly to say. I know. It is very, very silly to say. But…
Bill Gasiamis (32:54)
in the moment,
it’s probably okay in the moment, but now on reflection, it’s silly to say that, but at the moment it’s difficult and it’s a emotional experience and it’s a relief that you have and you have some autonomy now again, and you feel good about it. So yeah.
Gaining Autonomy and Finding Purpose
Marco Calabi (33:01)
Yes. Yes. Yes.
Yes,
yes, you feel good because you think you have a power again. I don’t know. And it is a moment. It is a very important moment for you. I understand. I understand the luckiness.
able to know because other people ⁓ has no luck ⁓ like me. Like me. And I understand. And this thing makes me run because, OK, I’m lucky and so I want
Bill Gasiamis (33:55)
Mm-hmm.
Marco Calabi (34:11)
I want to help others because I’m black. And so.
Bill Gasiamis (34:16)
Yes,
have luck. You have a bit of luck on your side. You are improving. You’re getting better. You have autonomy. Again, you want to help other people because it’s important.
Marco Calabi (34:25)
Yes, very. In my opinion, it is very, very important because life otherwise is meaningless.
you have to give some meaning to your life. And the stroke in some way helped me to discover my possible goal in my life.
Bill Gasiamis (34:44)
Yeah.
calling in life, understand. So you didn’t get married, you didn’t have a family.
Marco Calabi (35:09)
No, I never married, but I have made a girlfriend for, I don’t know, 11, 12 years. We are like married. No, no, no, no.
Bill Gasiamis (35:28)
Okay, but you didn’t have children. Okay.
So for you made a good point about purpose and meaning in life and helping other people. If you’re, if you don’t have family to, ⁓ fuss over to ⁓
to help out, to support, et cetera, when they’re young, like children, it could be a little bit of a gap in your life about purpose and meaning. And now that you had the stroke, you found that supporting other people provides you with some additional purpose and meaning above your relationship as well with your partner.
Marco Calabi (35:50)
Yes.
Yes.
Yes, because not ⁓ having keys makes me available, let me see, help others who have keys and maybe ⁓ they are busy, too busy.
Bill Gasiamis (36:22)
Yeah.
Marco Calabi (36:35)
for other things and I try to make ⁓ my life helpful for those ones.
Bill Gasiamis (36:46)
Yeah, you have
more spare time and you can allocate that to helping other people. Yeah. So, you know, the
Marco Calabi (36:50)
Yes, yes, yes, yes.
Bill Gasiamis (36:59)
You talk very positively about your recovery. You’re focusing on all the positive things. You wrote a book. You want to help other people. But was there some times that you really struggled, that you had a really hard time and you needed more support emotionally or mentally?
Marco Calabi (37:18)
both of things. I had ⁓ moments with a lot of climate.
Bill Gasiamis (37:21)
Both.
crying, yeah, very common.
Marco Calabi (37:32)
because
⁓ in those moments I was ⁓
I saw my life had problems. And for example, my mother’s teach me again ⁓ to wake on the shoes. And so in that moment, I…
was I was ⁓
I… ⁓
I understood my situation very deeply. And why I wanted to prove it? Because every day I wanted to go on and every day I wanted to progress because I don’t want to live
was moments again. I would like to make my life better.
Bill Gasiamis (39:06)
Uh-huh. Understand. Yeah. But it was difficult to make your life better because you’re just in the recovery phase. You’re very restricted. Things are difficult.
The Power of Mindset in RecoveryMarco Calabi (39:14)
Yes.
It is very, very, important the presence of your family, of your friends, because otherwise I would not be here. ⁓
Bill Gasiamis (39:40)
Yeah, that helped to bring you back.
Marco Calabi (39:41)
Yes, yes.
And then after their help, you must help yourself. Because I understand, I understand you have everything to complain, but complaining is useless. It’s useless.
Bill Gasiamis (39:54)
as well.
Marco Calabi (40:09)
Complaining is natural, but it must be very short. A moment of self-reflection, a moment and stop. And then you must do something for yourself and stop. Stop to look to the ceiling.
This useless. I wanted to say this useless.
Bill Gasiamis (40:45)
Yeah, I agree. But it’s something we all do. We all find ourselves complaining about our situation, but as long as you don’t stay there for a long amount of time, you can do the complaint and then move on and continue looking at things that you…
Marco Calabi (40:57)
Hmm. Hmm.
Yes, Complaining is not
a part, it’s a mainly part of my spirit. I complain ⁓ very, very few times. I understand people are different and the complaining is different, but…
You must very, very, very aware of your situation and this stroke maybe makes you aware, more aware about yourself, about your problems, about your weakness and starting, starting, I interline, starting.
from that you can go on.
Bill Gasiamis (42:04)
You can go on. Yeah, I agree.
When you complain about things, like what kind of things is okay to complain about? Like in Italy, if the pasta is not cooked al dente, you must complain.
Marco Calabi (42:23)
Okay, yeah. Okay, yes, yes.
Bill Gasiamis (42:24)
you
It’s important. You have to tell the chef, I’m sorry, the pasta is
not al dente. You have to take it back.
Marco Calabi (42:35)
Okay, but you complain, you learn to complain about very important things. Yes.
Bill Gasiamis (42:46)
Yes,
it’s feedback. It’s not complaining. It’s feedback. My food is not al dente and I need you to make it again so I can eat it because I can’t eat like this. It’s too cooked.
Marco Calabi (42:51)
What?
I
never was, I never liked a very, very precious food and I ate everything. I tasted everything, I ate everything. Even in the hospital, I ate everything.
Life Lessons Learned Post-StrokeBill Gasiamis (43:24)
Is Italian hospital food good or is it terrible?
Marco Calabi (43:31)
It is a hospital book. And so it is very light. It is very, very, very simple. And it is very teachable. it is not a good book.
Bill Gasiamis (43:43)
Yeah.
Yeah. You spoke a little bit earlier about how you have to go on with your life. So looking back now, how have you changed the way that you go about your life? How do you do things differently now?
Marco Calabi (44:15)
everything, everything, everything. I looked at the life in different way because I put the things in different priorities, working, having good time with friends and so on. Because before stroke you…
to think about the things you do every day, but you don’t do that. Those ones. Then after the stroke, you start to do immediately the things. You don’t want to wait for
things, the right moment and stop. Because the right moment, you understand, is now, not after, not tomorrow, not the next week. Now, it is a new way of singing life. You stop to wake because
you understand time is very very precious.
Bill Gasiamis (45:50)
Yeah, and we may not have tomorrow. Understand.
Marco Calabi (45:53)
Yes, yes,
you must do the things now and stop. As you can. You must not be a Superman. You must not do ⁓ things, a lot of things. You must do what you can and stop. But you must do.
Bill Gasiamis (46:24)
Yeah.
Marco Calabi (46:25)
and
stop. Not tomorrow, not in one week, and not in one month. Now. You must do now. And stop. Never you understand, never stop you.
Bill Gasiamis (46:47)
Yeah, I agree. Once you have a stroke, you realize that you are mortal and that maybe you don’t have…
Marco Calabi (46:53)
It’s just…
Bill Gasiamis (46:58)
another 50 years or 40 years ahead of you. maybe you need to do, take more action, do more things, have the experiences you want to experience, whatever you can, I agree. ⁓ It’s something I think that is a good way to inspire people who have had a stroke, who have injuries, that you can find a way to do something that you want to do that you haven’t done.
Inspiring Others Through Personal ExperienceMarco Calabi (47:24)
Yes.
Bill Gasiamis (47:24)
that
you love. very important to try and get it done, find a way to make it happen. Even if you’re in a wheelchair, even if it’s difficult, even if you need a lot of planning, you know, has to be something that you tick, you tick off your list of things to do.
Marco Calabi (47:42)
And it is not important what type of disease you suffer, cancer, stroke, leukemia, so on. It is, in my opinion, very important your mind, the way your mind, the way…
Bill Gasiamis (48:10)
your minds.
Marco Calabi (48:10)
want you, your mindset, the way you want to go on and stop. But I want, I want, I want to tell my story. Maybe, tell. If I am able to go on, everyone is able to go on.
Bill Gasiamis (48:19)
Yeah.
Marco Calabi (48:41)
It is not something special. Everyone can go to work and so
Bill Gasiamis (48:51)
Yeah, I agree. Everyone should go on with their life in some capacity as much as they can. ⁓
Yeah, that’s excellent. What about strengths? What have you discovered in yourself that you didn’t know was there? Did you uncover some new powers, some new strength, some better understanding of what you’re capable of? Has it been a learning experience for you to
Marco Calabi (49:05)
Okay.
Yes.
Yes, after the writing of my books was a moment of reflection because in that moment I asked to myself, I’m able to write a book, so what can block me?
And in this moment, in that moment, I was able to do other things. Maybe here write another book, like choosing a social media manager for my Facebook and Instagram and asking.
to hospitals and associations to tell my stories, creating podcasts and so on because writing the book created a moment, a precise moment of going forward. And in that moment, I aware.
of my powers and my skills to go on. It was…
Bill Gasiamis (51:02)
Yeah. Yeah. You wrote a book,
you did podcasts, you helped your community by speaking. You did all these things that you haven’t done before the stroke.
Marco Calabi (51:10)
Yes.
Yes, and for example, now I’m discussing with a company for a possible speech of myself to inspire other people. And I’m telling the truth. I’m very, very happy because I hope this…
Bill Gasiamis (51:30)
Yeah.
Marco Calabi (51:41)
will ⁓ create something beautiful because I’m available to tell my story, to sell, perhaps something helpful. My best friend.
Bill Gasiamis (52:01)
Yeah, you know what I like about what I like about strokes and bio-codes?
Sorry, go ahead.
Marco Calabi (52:08)
My
best friend said, you are wiser. I don’t know. don’t know. I don’t know. Yes, yes. Before, was very hard. I was very, because my father was very hard. And I learned.
Bill Gasiamis (52:19)
Wiser. Wiser than before. Maybe.
Marco Calabi (52:37)
to be very hard. after the stroke, understood that heartless is useless because you reach the hearts of people with softness, not with heartlessness. Heartlessness makes ⁓ you more hateful.
and not more lovable.
Bill Gasiamis (53:10)
Yeah, understand. Yes, I agree. Very wise. That’s very wise. Very wise. ⁓ You know what I like about your telling your story in for another organization or to inspire people is a lot of the people in the audience will not have had a stroke or another health issue or anything like that.
Marco Calabi (53:11)
Go on, go on, sorry.
Yes.
Bill Gasiamis (53:37)
And what I like about it is that now there’s several years have passed since your stroke. So you’re standing on a stage telling your story. And one day, if those people happen to have a stroke or a negative medical experience, they have a picture in their mind of once upon a time, I was sitting in a room and there was this gentleman who…
told his story and he was telling us about how he overcame his challenges, how he ⁓ improved, how he got better. And maybe those people who are unwell now because something happened to them, like everybody in life, things go wrong. Maybe they could say, I remember that man and the story that he told me, and maybe I can take some action and do similar things and get better.
Marco Calabi (54:27)
Mm-hmm.
Bill Gasiamis (54:32)
like he did.
Marco Calabi (54:32)
Yes. I tell the truth. It is not easy. It’s not easy. The experience is made of steps. In steps, steps. In the beginning, I…
Bill Gasiamis (54:50)
steps.
Marco Calabi (54:58)
You want to prove yourself, you are able to do things. And these are very important to you. And then you change. Steps, you change. Because the situation is changing. And you cannot, cannot,
get things before you experience all the steps. It is, in my opinion, impossible. You must live every step. The first steps are physical. And then your mind changes.
But the first steps are physical and soft.
and you can you must you must us us us let that eat you must us let you be because you are not a superman you are not a special man and every every person experience these steps little by little and so
you must aware of this situation. Otherwise, try to go forward faster. And in my opinion, it is a very wrong way to go on.
Bill Gasiamis (56:55)
Very wise, my friend.
Marco Calabi (56:56)
Thank
you, thank you! Thank you, thank you!
Bill Gasiamis (57:03)
Your friend was correct when he said that you are much more wise now. I agree with him.
Marco Calabi (57:07)
Okay,
okay, okay. I will report you.
Bill Gasiamis (57:15)
Report back to him, let him know that I agree with him. Now, your book is available online, correct? We can get it on Amazon, everywhere.
Marco Calabi (57:21)
Yes.
Okay. Because in Italy, ⁓ I found a publisher. In the world, I decided to publish myself the book because I wanted to spread my story.
as full as possible, I would say. And so I think what is the best platform, in my opinion, it is in this moment, Amazon. Because it can provide a digital version, paper version. ⁓
Bill Gasiamis (58:07)
Yeah.
Marco Calabi (58:18)
is only for US countries and so on. Instead, digital fashion is worldwide. And so, it is very powerful because I can reach every person in the world.
Bill Gasiamis (58:44)
Yes, hopefully.
Marco Calabi (58:45)
It was
my idea. And I started and I make my book translated. I published it in Amazon. I created a digital paperback version and so on because I wanted to make it available.
Very, very much.
Bill Gasiamis (59:19)
Yes, indeed. you have well done. I’m going to have a link to the Amazon ⁓ book. And also you will send me some links to ⁓ any other areas you would like us to send people if they’re interested to find out more information about it. I thank you for reaching out and joining me on the podcast. I very much appreciate it. It’s nice to meet you and to hear your story and all the best with your ongoing recovery.
Marco Calabi (59:24)
Okay.
Okay.
Thanks.
Yes.
Okay, and I say thank you, thank you, Bayard for your time, people, and thank you very much to tell my story and to give me the possibility to tell my story.
Bill Gasiamis (1:00:08)
Well, what a lovely conversation and what a journey and what wisdom to our listeners. If today’s episode resonated with you, please share it with someone who needs to hear it. Leave a comment and leave a review. Subscribe if you haven’t already. Marco’s book, Life Change to Hell and Back is available on Amazon. The link is in the description below. And remember, if you want to stay on top of the latest stroke research without the overwhelm, turnto.ai has you covered.
just $2 a week use code bill for 10 % off. Link is in the description
And until next time, keep going.
The post Return to Work After Stroke – Marco Calabi’s Honest Recovery Story appeared first on Recovery After Stroke.
Life 3 Years After Stroke: Three years ago, Pete Rumple was in a hospital bed, weighing 337 pounds, unable to walk, unable to talk, and completely paralysed down his right side following a massive hemorrhagic stroke. He was on 17 medications and had just spent his first night as a wheelchair user. By his own admission, the first year was so dark that he didn’t want to live.
Today, Pete does CrossFit every day, has lost 150 pounds, is off 15 of his 17 medications, and is about to launch a new business at 61 years old.
This is what life 3 years after a stroke can look like and, more importantly, how Pete got there.
The First Decision: Control What You CanWithin days of his stroke, while still in the hospital, Pete made a choice. He couldn’t walk. He couldn’t use his right arm. Doctors were managing everything around him. But he could control one thing: what he ate.
“I got to change everything,” he says. “And as I lay there, this was one thing I could control with all the things I couldn’t.”
Pete reduced his intake to two or three bites of food per day. By the time he left the hospital 30 days later, he had lost 40 pounds. That single decision became the foundation of everything that followed.
For anyone newly out of the hospital and feeling overwhelmed, this is perhaps the most important message: you don’t have to fix everything at once. Find one controllable. Start there.
Books like Grain Brain by Dr David Perlmutter and Why We Get Sick by Benjamin Bikman are excellent starting points for understanding the role of nutrition in brain recovery; both are recommended in this episode.
Movement: From Water to CrossFitPete’s physical recovery moved in deliberate stages. With right-side proprioception severely affected, his body couldn’t properly sense where it was in space land-based exercise felt impossible at first. The solution was water.
“The water surrounds you,” Pete explains. “It’s easier to move with what we both have.”
He spent nearly a year in the pool doing aquatic therapy, then transitioned to a gym with a personal trainer for four months, then, in April 2024, ditched his cane and started CrossFit. He now attends every day, with about 30% modification.
The journey from wheelchair to CrossFit wasn’t fast, and it wasn’t linear. But it was intentional.
The Brain Science Behind Doing Hard ThingsOne of the most fascinating parts of Pete’s recovery is how he used neuroscience to drive his progress. After watching a Huberman Lab episode featuring David Goggins, he learned about the anterior mid-cingulate cortex (AMCC), a region of the brain that grows and strengthens specifically when you do things that are difficult and unpleasant.
“Everything I did not enjoy or created pain, I’m doing it.”
This wasn’t masochism. It was a strategy. Pete began deliberately choosing the exercises, behaviours, and tasks he least wanted to do and watched his recovery accelerate as a result. His speech improved. His movement improved. His cognitive function came back faster.
Bill adds important context here: when you visualise movement, your brain fires the same neural pathways as when you physically perform it. Pete used this daily, studying his CrossFit workout the night before, visualising each exercise, then arriving 30 minutes early to breathe and mentally rehearse before training.
This is neuroplasticity working for you, not against you. The choice is yours: choose the hard that rewards you, or endure the hard that doesn’t.
Identity: Three Words That Changed EverythingBeyond the physical, Pete’s recovery demanded a complete rebuild of who he was. An executive career was gone. Independence had been stripped away. The personality and habits that contributed to the stroke, such as overworking, overeating, and using alcohol to manage stress, needed to be replaced, not just removed.
He approached this the way he’d approached business: with a framework.
At any given time, Pete identifies three words that define who he is. Right now: resilient, consistent, and unafraid.
“I try to be honest with myself and say, where am I now?” he explains. “And it may change, but it gives me something to triangulate toward.”
This kind of identity-based self-management, knowing who you are deciding to be, not just what you are trying to do, is one of the most transferable lessons from Pete’s story.
What Life 3 Years After Stroke Really Looks LikePete’s neurologist, who once saw him quarterly, recently told him she doesn’t need to see him annually anymore. “We have not seen this kind of recovery before from what you had,” she said.
He’s about to start a fractional leadership business with a former CFO. He does CrossFit every day. He sleeps well. He volunteers. He uses AI tools to stay sharp and curious. He is, as he puts it, “on the other side of it.”
But he’s also clear-eyed about what’s ahead: returning to high-stakes work, managing the stressors that contributed to his stroke in the first place, and monitoring the potholes that come with re-entering a demanding professional world.
“I realise that is a very real risk,” he says. “I’m going to test and learn.”
The Lily Pad PrincipleWhen asked how to frame the journey for people still in the early stages, Pete offers one of the most useful images in this entire conversation:
“It’s like lily pads across the lake. Get to a lily pad, then get to the next one. Don’t worry about boiling the ocean. Don’t worry about what it’s going to be in months or a year. Step by step. Keep pushing.”
That is life 3 years after stroke, not a finish line, but a direction. And for Pete Rumple, the direction is forward.
???? Want more stories like this? Read Bill’s book recoveryafterstroke.com/book | Support the show: patreon.com/recoveryafterstroke
| DisclaimerThis blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan. |
From Wheelchair to CrossFit: Life 3 Years After a Massive Hemorrhagic StrokePete Rumple lost 150 lbs, ditched the wheelchair, and now does CrossFit at 61. Here’s what life 3 years after a stroke really looks like.
Turnto.ai Interview
Peter Rumple Interview EP 332
Turnto.ai discount code: Bill10
Highlights:
00:00 Introduction to Life 3 Years After Stroke Recovery Journey
05:31 Physical Recovery and Rehabilitation
11:05 Dietary Changes and Weight Loss
15:42 Medication Management and Health Improvements
21:29 The Role of Visualisation in Recovery
26:03 Embracing Discomfort for Growth
33:31 The Power of Hard Work and Persistence
40:53 The Journey Back to Work
50:48 Navigating Health Challenges
56:25 Resilience and Consistency in Recovery
01:04:38 Proactive Health Management
01:15:11 Defining Identity Through Resilience
Transcript:
Introduction to Life 3 Years After Stroke Recovery JourneyPete Rumple (00:00)
And Bill, I want to take a second and plug your book back in the first ⁓ the first session I did with you, I referenced a number of things you taught me through the podcast that I did to make to start building momentum like the cooking dinner every day was the to do. That was your mission. Yeah.
so much of what I’ve learned from you, the podcast and what’s inevitably in the book was a great starting point for me. And I built my, my stuff on top of it, but it was really great to stand on your shoulders and get, and get that lift.
Bill Gasiamis (00:44)
Hi everyone, before we get into Pete’s story and you are definitely going to want to hear this one. I want to share something I’ve been using myself that I genuinely think could help a lot of you. It’s called turn2.ai and it’s an AI health sidekick that keeps you up to date with personalized updates every single week. Did you know there were over 800 new things published every week related to stroke? Research, expert discussions.
patient stories, clinical trials, events. It’s an enormous amount of information. Turn2 finds what’s most relevant to you and delivers it straight to your inbox. I use it myself and it’s genuinely my favorite tool for 2026 for staying across what’s new in stroke recovery.
It’s low cost and completely patient first. You can try it for free. And when you’re ready to subscribe, you can use my code, BILL10, at turn2.ai slash sidekick slash stroke to get a discount. I earn a small commission if you use that link at no extra cost to you. And that helps keep this podcast going. Also, if you haven’t yet, pick up a copy of my book, head to recoveryafterstroke.com/book. Real stories, real tools.
The same stuff Pete and I talk about today and a huge thank you to everyone supporting us on Patreon and in the other ways that you support the show and myself. You’re the reason this content stays free for the people who need it You can support the show at patreon.com/recoveryafterstroke. Right. Let’s get into Pete Rumple’s story. Massive hemorrhagic stroke.
Wheelchair couldn’t walk or talk 337 pounds three years later. He does CrossFit every day So you’re gonna want to hear this one. Let’s get into it
Bill Gasiamis (02:35)
Pete Rumpel, hello, welcome back.
Pete Rumple (02:38)
Hey Bill, it’s great to see you again.
Bill Gasiamis (02:41)
Great to see you too, my friend. ⁓ Last time we met was about a year ago. And this is gonna be a slightly different episode because we’re gonna talk about what things were like then and then what they’re like now, just so that we can paint a picture for people about how recovery has gone, what happened in the last 12 or so months. And in the previous episode, by the way, that was episode…
338 or something. And now we’re nearing episode 394, 395. will be. So I’ve been pretty consistent. So it means that it’s been over a year because I try and release one episode a week, et cetera. So it’d be a really good thing to do for people is to give them a bit of a guide of.
some of the setbacks, some of the challenges, some of the things that have changed, improved. And now everyone’s different, okay? So this is Pete’s version. And what we’re hoping to do is kind of inspire hope, Pete, right? We wanna give people hope that things can change and improve. And even if it’s slower for you than other people, there can be a reward for putting in a lot of effort, hard work, re-educating yourself about what it means to live healthily.
and all that kind of thing.
And give us just a little bit of an insight because there’ll be a link to the original video where you can find out Pete’s complete story, but give us a little bit of an insight into the stroke, the day that it happened, what it was like.
Pete Rumple (04:24)
Okay, you bet Bill it was about 38 months ago. The stroke, was, it was a massive hemorrhagic stroke.
⁓ eight months in a wheelchair had to learn to talk again, walk again, all that. And, ⁓ so we had, ⁓ had the call about a little over a year and a half through it. And then, ⁓ now I’m further through it and, it’s gone amazing. I’m so lucky. So whatever we want to dig into that’ll be great.
Bill Gasiamis (05:04)
So your deficits were your right arm wasn’t working properly. Initially you weren’t able to walk. You were wheelchair bound for nearly six months. ⁓ So what are the physical deficits like now? What has changed? What has improved? And how did that go? what were the things that you did that helped you improve in that way?
Physical Recovery and RehabilitationPete Rumple (05:31)
Yeah. So Bill, I, um, it was my right side that I lost, which I forget what the term is, but, uh, it was my whole right side. So, um, when I, what, what I did that was important is first of all, totally overhauled my diet. And I, um, I had lost about 150 pounds.
Um, I then, when I started about a year into it, I started, um, doing aquatics, the water aerobics to start dealing with their proprioception and the, um, and just movement. couldn’t, I couldn’t do that in, the ether. I couldn’t do it in the air. had to do it with the water.
Bill Gasiamis (06:27)
Okay, why is that? Because that’s interesting, because I have a similar problem with proprioception. My left side kind of doesn’t know where it is. There’s not enough information telling it where it is. And sometimes it overcompensates and I get off balance, etc. It feels strange. In the water, I also calmly, I felt calmly different, like I felt ⁓ more supported, even though the water wasn’t really supporting me. How was it for you?
Pete Rumple (06:56)
You’re absolutely right, Bill, because the water surrounds you, right? So it’s easy to move in the water with what we both have. So I spent almost a year in the water. then I started to, then what I did is I moved to a gym with someone helping me work out for about four months.
And then in April, so almost a year ago, in April, I got rid of my cane and I went to CrossFit. And so now I do CrossFit every day. And that was really ugly at first, Bill, and I had to do a lot of modification. But now I modify probably 30%. But
Bill Gasiamis (07:42)
Uh-huh.
Pete Rumple (07:54)
row bike. can’t run yet. I’m still walking, but I’m getting ready to go to the beach and practice running for about a month.
Bill Gasiamis (08:05)
Okay, where in the head was the hemorrhagic stroke? Where did it happen? Do you know?
Pete Rumple (08:14)
The where, ⁓ I forget.
Bill Gasiamis (08:18)
That’s all right. It’s not important to remember. So also then, ⁓ when you had the hemorrhagic stroke, how was it rectified or resolved? Did they operate? What did they do?
Pete Rumple (08:30)
They didn’t have to operate.
Bill Gasiamis (08:32)
Uh-huh.
Pete Rumple (08:33)
They just, I got in there, they did things to make sure the bleeding stopped, ⁓ but it was no operation.
Bill Gasiamis (08:45)
what caused the bleed? Was it ⁓ high blood pressure as a result of your weight?
Pete Rumple (08:50)
It was a number of things, was high blood pressure, it was a lot of stress. They have a scale bill called the Holmes Raw Scale, Holmes with an L and Raw, R-A-H-E, where you can, it has like 42 major stress events. If you score under 150, you’re fine, 150, 300s.
pretty bad and then over 300 is devastating like it’s predicts a major stroke or heart attack within a year. And I was 360 on that scale. I’d gone through the divorce, I had the kids, I had a job change, you name it, I had it. ⁓ Weight was not good, drank too much. So that was my wake up call.
if you will, which was severe. And it’s been, it’s great now.
Bill Gasiamis (09:53)
Yeah, so your arm was completely flaccid, I think, when we spoke last. So where is it now?
Pete Rumple (10:03)
I can do everything with it. This is the, so I can lift and I’m lifting more weight, not where I was, but about probably 50%. I’m doing pull-ups with the arm and my legs are, I’ve worked them a lot. I’m very strong there. So it’s getting there.
Bill Gasiamis (10:25)
Okay, cool. When we spoke, you mentioned that in hospital alone, you’d lost 40 pounds. That kind of makes sense. A lot of people say that things change in hospital food relation. When you’re unwell, ⁓ how you consume food completely changes, as well as how hospitals ⁓ treat people with regards to the food, how it’s terrible, how often you get to eat.
and how accessible it is. So, but earlier, a little earlier, you said that you lost 150 pounds all up.
Dietary Changes and Weight LossPete Rumple (11:05)
Yeah, Bill. So when I was in the hospital, which was obvious, I was there 30 days from the stroke. And that was where I had to make a choice. And it was like, if am I going to try and get better or not. And so what I did is I ate two to three bites of food a day. That was it because I was in a wheelchair, Bill, I couldn’t move.
So coming out 40 pounds lighter was ⁓ a lot of work and a lot of fasting, if you will.
Bill Gasiamis (11:42)
Why did you decide that that was what you needed to do? How did you conclude that? I know I’m gonna be in hospital. I’ve had a hemorrhagic stroke. There’s nothing else I can do. What I’m gonna do is fast and stop eating food. How does that?
Pete Rumple (12:01)
was a first step, Bill. Absolutely. was like, I got to change everything. And so as I lay here, this is one thing I can control with all the things I can’t.
Bill Gasiamis (12:14)
In hospital though, most people in hospital don’t have that realization. I mean, that would have been days out from a hemorrhagic stroke. They’re telling you all these things. Like how did you get to that conclusion? Were you cognizant of needing to do that earlier before you got sick and then you thought, well, now I have to do it or was it an aha moment of some other kind?
Pete Rumple (12:40)
No, you’re absolutely right. And it was something I knew was getting out of control, Bill. And I couldn’t, I couldn’t resolve it. It was just, it was really tough. And I’m like, this is it. I mean, this is the ultimate wake up call. The other one, Bill, was I had, when I came into the hospital, I was on 17 meds. I now have two.
and I’m at 20 milligrams and I’m probably off those in the next four to five months. So it’s been a long programmatic diet, nutrition, health, and it’s been three years. I mean, it’s not insignificant for sure.
Bill Gasiamis (13:27)
⁓ What was the 17 medications treating or or or managing?
Pete Rumple (13:37)
I think Bill, it’s almost like, like, what do you do with this guy? You got to throw everything at him to keep on going. I don’t think it would have been 17 for very long. It was probably stop gap measures. Some were pain, but even the pain bill second day. I said, I want no more pain meds, take them away. And it was brutal, right? Cause you know, the way you feel and the, my scapula, my legs, was, it was
awful, but I was like, I found my way here, I got to find my way out and let me get off as much as I can and start the pilgrimage back.
Bill Gasiamis (14:20)
Before the stroke, would you have been somebody who would have taken a device to change your diet?
Pete Rumple (14:28)
I would have taken every hack I could have, Bill, before the stroke.
Bill Gasiamis (14:34)
Anything to avoid doing the hard work? that what you mean? Yes.
Pete Rumple (14:38)
Yes, sir. And look, I was always a hard worker. And I would work out and do stuff. But this is a whole other level. This became life or death. I mean, because you know, the stats bill, like, when I looked at the stats that about 75 % of people are gone in year one, there’s 25%, especially hemorrhagic, 25 % at the time.
25 % a month later, 25 % at the end of the year, another 20 at the end of year two. I’m like, I’m gonna go through all this and then I still have so little chance. So I just went for it and I went really hardcore.
Bill Gasiamis (15:25)
Did you eat, drink too much to manage emotional ⁓ stress, challenges? What do you think was behind it? Or was it just bad habits? Or did you think you were bulletproof? What was the reason behind it?
Medication Management and Health ImprovementsPete Rumple (15:42)
Everything you just said, Bill, everything you just said. Yeah. I mean, it’s everything, right? You start justifying bad behavior. You have a reason for why things happen. And I just like, even when I try to lose weight, though, I might lose a couple pounds, but then I eat again and what I was eating, how I was eating. So in that first year, I went super deep on nutrition.
and how your body works. And I went from, at the stroke I was 337 pounds. And then when I did my podcast with you, I was 180.
Bill Gasiamis (16:25)
Yeah, well, ⁓ one of the books that I’ll mention to people, you might have read different ones, and that’s cool. But the one that always comes to mind that I always recommend is Grain Brain by Dr. David Pelmutter. So if you’re in the very early stages of recovery and you want to make some changes like Pete did, read or listen to the book Grain Brain by Dr. David Pelmutter, and then ⁓ read a book called ⁓ Why We Get Sick.
⁓ I’m going to quickly do a search on ⁓ online because I keep forgetting the person’s name. ⁓
And what it’s going to do is going to why we get sick by Benjamin Bickman. And what it’s going to do is going to give people an insight into the. ⁓ I one of the things is the first book is the food that you can avoid and stop eating and the reasons why and how they benefit the brain and then ⁓ why we get sick is an insight into, in fact, exactly that why we get sick.
so that you have an understanding of what might have got you into that real bad state. And then also before that, ⁓ the food component of it, because those two things, if you know why you got somewhere and then you know what the trigger was, what the thing was that made you get there, so the food, for example, then you’ve got a great foundation for taking the next step forward ⁓ and reversing it.
Pete Rumple (18:02)
Absolutely.
Bill Gasiamis (18:04)
and improving your health and improving your diet, losing weight and decreasing your risks of heart attack, stroke, cancer, all that kind of stuff. ⁓ So I love that you got curious. That’s what I did. I was in hospital reading and watching YouTube videos about how I’m going to recover, how I’m going to overcome things, all sorts of stuff like that. And it was…
Pete Rumple (18:19)
I remember.
Bill Gasiamis (18:31)
in a situation where control is given over to medics, doctors, surgeons, all that kind of stuff, you feel like you’re a little bit of a, you’re just floating in the wind and you’re not really stable and you don’t have an anchor point, right? So when you, if you want to feel like you’re a little more anchored, what you could do is you could take control of the controllables and
Nutrition is one of those controllables and it doesn’t cost you any extra. You don’t have to spend money.
Pete Rumple (19:04)
You’re absolutely right, Bill. It’s a huge point. By the way, there’s a great app, and I know there are many, but there’s a great app called Yuka, Y-U-K-A. You can scan any barcode in the store and it will tell you the score and what’s wrong with it and the amount of food I was eating that was, especially in the U.S., Bill, heavily processed, additives, dyes. It’s like toxic.
And so you can scan it and know what’s really in it. And it tells you what’s good, what’s bad. And it was a huge help.
Bill Gasiamis (19:44)
Yeah. So we’re going to have some of these links in the show notes for anyone who wants to find them. I’ll put a link to the books. I’ll put a link to Pete’s previous episode. We’ll put a link to that Yuka app. Pete, that’s your homework. You have to send me that link when we’re chatting. ⁓ When you say you’ve lost 150 pounds, like that is 50 kilograms. That is almost
two-thirds of my weight. Well, it’s actually, yeah, it’s about two-thirds of my weight. That means that if I lost 50 pounds, I would just be a bag of bones.
Pete Rumple (20:30)
Well, and Bill, I was a bigger guy to begin with. have a big frame and I played a lot of US football, American football. So I had a lot of weight to lose, Bill, and it’s gone now. And I’m back up to about 205 and it’s all muscle life, about a 32 inch waist now.
really, really fit and I go for it. And by the way, by the way, I want to make one point to all listeners that took a long time, Bill, like between being the wheelchair for eight months and then getting the pool. It took a long time. I used to go and sit and watch people work out to just reacquaint myself.
Bill Gasiamis (21:03)
How old are you?
The Role of Visualisation in RecoveryPete Rumple (21:29)
what it looked like and inspire myself. It has been a long road, but my goodness, is absolutely I’m on the other side of it now. Cause as I had said in the first podcast, the first 18 months, I did not want to live, especially year one, ⁓ immense amount of pain. had been a successful executive that was gone. Like it was really
really rough. And so now it’s beautiful. And I want people to know that because it it’s so worth it. Delay gratification, you learn a lot about it. And it’s ⁓ Yeah.
Bill Gasiamis (22:14)
I love that delayed gratification, but also you went into a gym watching other people train when you couldn’t train, just so you can be around it and familiarize yourself with it again. That’s really interesting. That’s probably one thing I’ve never done is go to a gymnasium and watch other people train. It’s a bit creepy Pete.
Pete Rumple (22:32)
Yeah, it is. It’s weird. And people would look at me like, what’s he doing? And by and by the way, Bill, I did a lot of work on how to breathe, which was really helpful, how to how to manifest and to really sit and get mentally so I go even today, Bill, I go in a half hour before my workout to work on breathing and visualizing my exercises, because I get the
the list of what my workout is before I get there the night before. So I study and I prepare and then go.
Bill Gasiamis (23:10)
What I love about visualizing is that if you visualize the brain actually fires off the exact same neuron and pathways that it does if you actually physically do that thing. And there’s been studies in the past that have showed that you can take an average guy like me and you can make them watch a video of somebody doing archery, for example, and you can ⁓ take them through a number of
repetitions of this person, this champion doing archery. And just with that information and the visualization techniques later, you can take somebody who has basically never shot ⁓ an arrow through a bow and you can get them to a certain level of competence far more rapidly than you would have if you just got that person out of a crowd and sent to him.
Have you ever shot an arrow? If they said no and they took the shot, they probably wouldn’t be able to do it as well as the person who was trained by just watching what the other person, the champion was doing. And when I was in hospital wanting to walk again, I’m sitting in my bed between sessions because I had a wheelchair as well. And I was visualizing myself doing the perfect walk, what the perfect walk would look like.
And then I would take myself later to ⁓ therapy where I would be walking and I would be trying to replicate what I was seeing in my head so that we could get a similar result. And of course at the beginning, your leg is now doing it physically and it needs to catch up to the brain. The brain has ⁓ the pathway, but the leg needs to catch up.
So then what the leg does is it goes, this feels a bit weird or this is a bit strange or this is not how I expected it. But it has a reference point for where to get to and how to do the perfect step, right? And then you’re closer to the perfect step than you were if you were just relying on therapists to ⁓ train you through that.
Pete Rumple (25:22)
You’re absolutely right, Bill. And the brain is amazing. Look, it can work for you or against you depending on what you’re thinking and how you’re doing things. And it was really amazing, Bill, because as I built my capability through CrossFit, it was amazing how my brain would start to take over. Like I wasn’t sure, but my brain was already, I got it, and so grew.
It started carrying me and just getting it done. It’s amazing.
Bill Gasiamis (25:58)
Yeah, yeah.
Embracing Discomfort for Growth But how did you know to do that? That’s the thing that I’m interested in understanding because I didn’t know the guy before stroke didn’t know about doing like magic like this. know, how do you, I don’t know, like, can you explain how you found yourself in that situation? Cause I can’t, people go to me like, well, how did you know to do that? Or how did you do that? And I’m like, I don’t know what happened, but something clicked.
that made me stumble onto, discover, find all the necessary tools that I needed to get me to the next stage. I’ve never been able to do that before and I can do that now.
Pete Rumple (26:46)
Yep, me too, Bill, me too. And you know what? I think it’s how desperate we are for answers. And especially you can read all these blogs about what doesn’t work and what’s a waste of time, but you find the nuggets and you go for it. Here’s a great one, Bill. And I’ll send this in the link. Andrew Huberman, he runs a podcast called Huberman Lab.
He had David Goggins on and he purposely waited for Goggins to share with him the research around the AMCC, which is the anterior mid-cruciate cortex, which is a part of the brain. And when you do things that are hard and you don’t enjoy it, that part of your brain grows and gets stronger.
So I sat there, Bill, and I’m like, well, damn, if I can start to make my brain stronger, I’m going to do it. So I did all the stuff I hate to do. And I started doing it. And I started even faster, talking better, walking better, and really doing everything I did not like to do. And he even brings up the point when he describes it. He brings up that if you like running every day,
It doesn’t work. But if you hate running and you have to go run, it works and it makes sure and make, they’ve learned so much that was, that was about three to four years ago. They found it, but this is a massive find in the brain. And I started using it, Bill. And what I started to do was everything I did not enjoy or created pain. I’m like, I’m doing it.
And it took me from averting it to leaning into it. And it was amazing. it’s, you’d think it’s BS, it’s not. And Huberman, you know, he works at Stanford. He knows his stuff. It was really, really impactful.
Bill Gasiamis (29:03)
Yeah, it’s about being comfortable being uncomfortable, isn’t it? Like it’s realizing that you’re probably not killing yourself by paying in a little bit of pain exercising. also, yeah.
Pete Rumple (29:16)
And
Bill, I will just say, I did a very good job for the first time in my life of listening to my body. So I go hard, I push, but when I wasn’t feeling it or didn’t feel right, I take the day, relax, and then come back stronger next.
Bill Gasiamis (29:38)
I want to pause there for a second because what Pete just described is exactly the kind of thing I wrote about in my book. The idea that the obstacle is the path, the doing the hard stuff in recovery. If you haven’t grabbed the copy yet, it’s called the unexpected way that a stroke became the best thing that happened. You can find it at recoveryafterstroke.com/book. The link is in the show notes and in the YouTube description. So let’s get packed.
to Pete.
Bill Gasiamis (30:08)
Yeah, yeah, agreed. And it’s important to listen to your body after a stroke, because you don’t want to make things worse, especially when you’re still healing and still recovering and you’re still fragile, you know, there’s a lot of things that you need to take into consideration. However, being uncomfortable and being comfortable with that is really a good skill to master. ⁓ It is, ⁓ it reminds me of the saying that we hear that’s often attributed to
the old great Roman Emperor Marcus Aurelius, which is the obstacle is the way, you know, when you get to something that’s really hard, you go for it, because that’s what you’re to be. That’s the purpose of the obstacle. It’s to overcome it, to find the way around it, under it, over it, through it, whatever it is. And Goggins is a scary guy. He’s a scary guy, because he runs without, without cartilage in his knees or something. I don’t know what he’s missing.
but he shouldn’t be able to run, he shouldn’t be running and somehow he still runs. I think his version of running is a little toxic. I think he’s just a slight too far, ⁓ but nonetheless, it’s still proof of ⁓ what you’re capable of and how much people can push and go beyond their comfort zone. And if you’ve never pushed beyond your comfort zone, there’s no better time to do it. You really have to do it now because you want to activate the right neuroplasticity.
You don’t want to activate negative neuroplasticity, which rewires your brain to be more comfortable, less willing to do hard things. ⁓ And therefore, you get the results of that. You get the decrease in your recovery or the ⁓ overcoming of your deficits. So I appreciate that whole ⁓ mentality of finding what’s hard and
you’re probably in the right place. That’s probably what you need to do.
Pete Rumple (32:07)
Absolutely right, Bill. And I agree with everything you said. And look, I love Goggins, but it’s not to be like a warrior like him. The point is, like with Huberman, it was cool because Goggins thinks that way so much. He wanted to launch the foundational research with Goggins there with him. He purposely waited. So it was pretty cool.
Bill Gasiamis (32:35)
Yeah. And that that’s the thing, right? It’s like you get rewarded for doing hard things. ⁓ Stroke is hard. And if you ⁓ take the easy route, the comfortable route, the hard part of your stroke remains hard. Like it doesn’t get better. If you choose the other hard, the recovery
Pete Rumple (32:59)
right.
Bill Gasiamis (33:04)
benefits that you get from choosing hard of exercise, the hard of changing your diet, the hard of changing your mindset, et cetera. Like then that version of hard gets you a reward that is beneficial. The other hard just gets you more suffering. And that’s the hard you wanna avoid. Suffering without purpose. Well, suffering for a purpose gets you a payoff.
The Power of Hard Work and PersistencePete Rumple (33:31)
That’s right. That’s exactly right, Bill. And look, with the, when you put it all together between the diet, though, increasingly working out, going after the deficits, all that, day by day, painful, hard, depressing, but you start looking three months, six months, a year later, you’re like, you start building your will and your ability.
to do things you did not think you could do, and then it starts feeding on itself, and it becomes so powerful.
Bill Gasiamis (34:09)
Yeah, that’s my experience too. ⁓ Somebody put it in my head that I should start a podcast 10 years ago. It’s been 14 years since my first stroke this month, February, 14 years. It’s just gone like that. And then about three years in, a friend of mine said, should start a podcast type of thing. So I did. And it has been more than 10 years that I’ve been doing this podcast. ⁓
And I never thought that I’d be doing a podcast, let alone for 10 years. We’re talking about at the beginning, not a lot of episodes because I was too unwell to put a lot of episodes out. it’s ramped up now in the last four or five years, doing an episode a week, most weeks. And then the other thing I never ended up, I never thought I’d end up doing is writing a book here. Here’s the plug for the book.
Pete Rumple (35:01)
love it. I love it.
Bill Gasiamis (35:03)
The title is mental, like it’s the unexpected way that a stroke became the best thing that happened. ⁓ But the book is exactly the things that you’ve said. And I thought initially when I discovered those things about my book that I needed to put in my book, I thought that I was rediscovering these for the first time. Like at the very beginning, diets, ⁓ mindset, ⁓ exercise, sleep. ⁓
⁓ meditation, hanging around other people who are positive, all that kind of stuff, doing stuff for other people, ⁓ like volunteering, that kind of thing. I thought I was discovering these things ⁓ for the first time ever, but turns out these are things that humans have always done. That’s what they default to. They default to all of these things when it’s necessary, and that’s where they get lost from. They kind of move away from there because they get diverted from there, from say,
marketing or advertising or what somebody else is doing or through a lack of ⁓ focus from being distracted from work, from relationship issues, whatever the situation is. I didn’t write anything different in my book than has been written in the hundreds and thousands of books on this topic that have come before it. I just reorganized that and set it in my own words. But the reality is, is this is what
people do when they’re trying to recover. They default back to the bare basics and they’re things that you can implement without ⁓ spending any extra money buying a course or anything like that. Of course, you might need to read it in a book for the first time to remind you or you might need to hear it on a YouTube video, but the reality is, is that nothing new in this book.
Pete Rumple (36:51)
And Bill, I want to take a second and plug your book because I have not read it yet. But back in the first ⁓ the first session I did with you, I referenced a number of things you taught me through the podcast that I did to make to start building momentum like the cooking dinner every day was the to do. That was your mission. Yeah.
so much of what I’ve learned from you, the podcast and what’s inevitably in the book was a great starting point for me. And I built my, my stuff on top of it, but it was really great to stand on your shoulders and get, and get that lift.
Bill Gasiamis (37:38)
Yeah, isn’t it weird? Like it was just one thing, but it was the most important one thing. My whole world revolved around that. If I could put dinner on the table for the family in any capacity, it didn’t have to be like a five star meal or three courses or anything like that. It just had to be dinner. If I could do that, then that was kind of how I rehabilitated myself. I needed to be healthy enough, good enough, fit enough, have enough energy to just put a meal on the table for everyone when they came home from.
work. was such a it’s such a it was it was important for many reasons. But it was also what I didn’t realize the underlying benefits that it was creating, which were the ones that ⁓ I noticed later after
Pete Rumple (38:25)
Yep. And you were re-engaging and you were pushing yourself. And I remember you go to the store to buy the stuff you needed sometimes. like all that stuff, Bill, when I look at the beginning, I couldn’t watch a TV for over a year. I couldn’t listen and did not listen to music for two years. It was, and now I’m like back in the fold, but it’s the
push, the push, the push and just, you know, listening to the body, but going for it all the time.
Bill Gasiamis (39:03)
Yeah, exposure, like exposure, exposure, exposure, small, then larger, then more and more. I remember going to the stores to the local mall here, and we call it a shopping center, and parking the car, and then not being able to remember where I parked the car, walking around the entire car park, and talking to my brother, and going to him, he rang me just out of
blue and I said to him, he goes, what are you doing? I said, I’m walking around the car park. He what are you doing that for? That’s because I don’t know where my car is. I’ve been looking for it for half an hour and I’ve got no idea where it is. I parked it and I just got no idea where. I don’t know which car park. I don’t know where I came in from. I don’t know what level it was on. And I was just walking around the car park talking to my brother, just telling him, I came and got a few things, but now I can’t get back to my car.
Pete Rumple (39:55)
Yeah, and there’s definitely you know bill once I got out of the darkness There’s definitely some really funny stories That that happened especially like the way The way I would walk people would see me I might be in a restaurant and i’m going to the bathroom and they think i’m drunk Yeah, and they’re like making fun of him like hey i’m not drunk, but ⁓ I get
you know, I’m all right, I got it. And they’d be like horrified and I’d just start laughing. It was funny, but you gotta have some fun with it too, you know?
Bill Gasiamis (40:34)
Absolutely, you have to, you gotta laugh. you don’t laugh, well, it’s gonna be difficult time. You, ⁓ I remember when we spoke last time, you mentioned about trying to get back to work. ⁓ How did that go? Was it successful? Did you have some challenges? What was going back to work like?
The Journey Back to Work Life 3 Years After StrokePete Rumple (40:53)
So Bill, I’m gonna start back in June. I’ve done some projects, work projects, but I have not officially started working, but I’m going to. I’m starting a business with a close friend of mine, my former CFO, and we’re gonna start a new business.
Bill Gasiamis (41:18)
Tell me about the new business. What is it about? Can you share anything about it?
Pete Rumple (41:22)
Yeah, it’s called fractional leadership bill will probably go to companies that are ⁓ getting funded, trying to grow. They got a good idea. They can’t afford the people they need. So you basically it’s less consulting. It’s more you’re operating it for them and you work with multiple customers and it’s called fractional leadership is becoming a
really pretty popular model. And, ⁓ and also for companies that have that have their revenue is stalled or shrinking, get them turned around. That was my background. My background was ⁓ running chief revenue officer. So everything that drives revenue in a company and I was a CEO twice.
Bill Gasiamis (42:06)
Uh-huh. Soon.
Did you have a specific industry that you worked in?
Pete Rumple (42:23)
Yet a lot of times I call it TMT for telecom media and tech so tech companies and media and That kind of stuff Rosetta Stone was his language learning company. I was I ran all our institutional business education government and and ⁓ Corporate
Bill Gasiamis (42:49)
Wow, what a challenge. mean, technology is changing so rapidly. ⁓ I
Pete Rumple (42:55)
love
it, Bill. And look, I’m sorry, I just had to make this point and not forget it. That was another thing I’ve done, Bill is I’ve gone heavy into AI. And I did it, not just because it’s the buzzword. But I’m like, Hey, if I’m going through this process, if I’m retraining my brain, why not try to get good at stuff that I either didn’t do or need to know. And it’s been so rewarding, Bill.
Bill Gasiamis (43:24)
out.
Pete Rumple (43:25)
It’s just crazy. Like AI, use chat chat, GBT, and it’s like my, my best friend. now work with chat daily and it’s amazing how the tech technology works. Not only can it be really helpful for figuring things out and having a partner, but it also remembers things about you in how it builds the profile.
So it’ll basically say, Pete, don’t forget this, this, and this. And it’s awesome. It’s really killer.
Bill Gasiamis (44:02)
So here comes another plug, Pete. Okay, so this is not a sponsor, but it’s something that I truly believe in, okay? Because the person who contacted me, A, is an Australian, B, is a mother, ⁓ C, is a mother of two children with cerebral palsy. And she was looking for solutions to all the challenges that they faced as a family, especially to help her children, right?
parent would do. So then ⁓ she used to do research like you and me jump on the computer, do some research, find out about all the things that ⁓ she needed to know with regards to what was most current in cerebral palsy right now. And she’s the struggle because ⁓ imagine like the time that it takes when you have a stroke brain to research, read, comprehend, determine whether
Pete Rumple (45:01)
We know. Yeah. Yeah. Yeah.
Bill Gasiamis (45:04)
whether or not that is applicable. Okay, that’s not applicable. Put that to the side, do another search. And then also going to doctors and researchers and all these other people and saying to them, what about this? What about that? And then them not being aware of anything that was new because they’re too swamped. They’ve got a massive workload. They don’t have time to be up to date with all the research, right? And this is a hundred percent a full on plug.
I’m not apologizing for that. However, what this lady did, Jess from turn2.ai, I have a link to her interview as well, because I interviewed her, is she created an ⁓ AI that goes and does the research, the searching for you, and then sends you an email every week with everything new in your particular topic, for example, stroke. And then it tells you, I found
seven, nine, 10 things for you this week that are new on stroke. It could be a podcast. It could be a research document. could be ⁓ whatever it is. It could be a book. It could be anything. It just finds it and sends you that information. And as your recovery continues, right, ⁓ what happens is ⁓ you might say, okay, now is there any information about food related to stroke recovery and healing the brain?
And then it adds that to the search list. And then it comes back at the end of the next week with all the new information from food and brain. And then also whatever it was that you previously prompted it to find you. And it just keeps finding information and you build it and you build it and you build it. And then next week you get interested in meditation and you type, what can you tell me about meditation and healing the brain? And then it’s going to bring you all that information to your inbox. I spent
hours and hours and days and days trying to find information about what I needed to know about stroke recovery. And when I found that little piece of paper, I had to go through the rabbit hole. I had to go down the rabbit hole and try and find ⁓ where ⁓ where it kind of where the exit point was where it led to so that I can discover whether I need to implement this, do this. So this just saves
so much time and the guys are selling it for two bucks a week. Like you can get a month free and two, and then after that it’s two bucks a week just to find and do all the searching for you and bring you specific and relevant stuff. And we’re talking about scientifically relevant and specific like PubMed articles, like scientifically proven stuff, not what Bill ⁓ concocted up in his bedroom.
you know, in suburban Melbourne, like proper things. So I love that you said that you’ve turned to AI. I’ve been using chat as well. Chat helps me with so many things, but what’s important is to learn how to interact with it. And that’s another, that’s another thing, another skill to discover. And it’s important that we jump on the bandwagon. AI is not going away.
You need to learn about it, how to interact with it, and how to use it to benefit you and decrease the amount of time it takes to do something and get to recovery.
Pete Rumple (48:37)
You’re absolutely, absolutely right, Bill. I mean, it is, and even if you just use it for basic stuff to begin with, and you start learning how to create the right prompts to get the kind of answers you’re looking for, it’s a great skill. And the biggest thing is not being afraid and leaning into it.
Bill Gasiamis (49:00)
Yeah, not bad. Well, there’s nothing to be afraid of. They can get them all for free. At the beginning, you can get a free subscription. It doesn’t cost anything. And it’s just as useful. Perfect for that early training kind of phase in your chat, in your chat, JBT kind of discovery. There’s also Claude, there’s also the Elon Musk one. There’s hundreds of them now. Yeah, there’s heaps of them now, right? So I really encourage people to do that because
If you ask it one question like, you know, what is one of the most ⁓ best books that I can read for, we’ll call it nutrition for nutrition and stroke recovery. That’s just going to decrease the amount of time it takes to find those books and bring that to you. Jump on Amazon, find it, get it sent to your house. ⁓ So I think it’s a great time for people.
and it’s never been a better time to recover from a stroke. I mean, it’s a shit ⁓ group to become a part of at the beginning and it’s difficult and it’s painful. But if somebody has a stroke today compared to a stroke 30 years ago.
Pete Rumple (50:17)
⁓ my goodness.
Bill Gasiamis (50:19)
Like it’s a completely different experience. ⁓ I think we’re kind of lucky to be living in the time that we’re living. ⁓ Even though I know that people hear about AI and what it could potentially do in some other situations. ⁓ Let’s use it for good. Like let’s break the work.
Pete Rumple (50:21)
That’s all we’ll
That’s
right. That’s exactly right, Bill. It can be used for evil, but it can be used for good. So use it. That’s right.
Navigating Health ChallengesBill Gasiamis (50:48)
Yeah, just like any technology, right? Like you hear all these things, but any technology can be used for good or evil. So let’s just use it for good. Let’s just make the most of it. So before your stroke, you were going through a divorce or had you already been divorced?
Pete Rumple (51:08)
I was already divorced. Yeah, it had been it had been a couple of years earlier. I had a bad car accident a bunch of but you know the kids live with me. It was just a stress sandwich and I did not go out the right way.
Bill Gasiamis (51:27)
Yeah. You didn’t go out at the right way because what do you think was behind that? Like, it’s hard to make really good decisions in very stressful times anyway. You have to have an opportunity or the insight to pause, step out of that situation for a little bit, reflect and then try and make decisions. how did you get into that stage where you found yourself not being ⁓
not going about things appropriately, for example, perhaps.
Pete Rumple (52:02)
For me, Bill, it was like I didn’t have a choice. I was now in a wheelchair. I was in pain and I had nothing I could do but think. And at first that was very negative. It was, I didn’t handle it well. I didn’t accept it. And once I went through that process and I got like, okay, I’m going to get holistic about this.
And by the way, I don’t want to, I don’t want to just fix the physical and then I get done and everything else is a wreck. So went after all of it and just started carving up my day, spiritual, cognitive, physical, mental, every day, a block of each practicing writing, all that stuff. So I just started doing it and rebuilt my life.
probably like I should have in the first place, but stuff happens. I had to, you sometimes, you know, we, you and I laughed about this before. Sometimes we’re a little thick. takes a little longer. So it took me a while, but I’m there now.
Bill Gasiamis (53:18)
Yeah. And reflecting on that version of yourself from the past, does that does that person ever come up again, every so often, because we’re talking about all these positive things, all these amazing changes. And I don’t want to paint a picture that it’s only ever fantastic you and I like what we go through after our initial stroke has been all just roses. Is there moments of
that things rearing their ugly head and you reverting back, how do you catch yourself when you’re there?
Pete Rumple (53:57)
Yeah, I mean bill that’s why what’s really good about this is my first podcast with you because we went really deep in the in the darkness of that now bill is beautiful man. It is beautiful. I am almost I almost don’t talk to people about it because
My life is so much better because I had a stroke. It’s crazy. It sounds nuts, but it’s so true. Everything’s sweeter. I just, it’s hard to describe. It’s a blessing.
Bill Gasiamis (54:38)
Yeah, that’s crazy. It is probably crazy.
Pete Rumple (54:42)
It is?
Bill Gasiamis (54:45)
I find myself, ⁓ I find myself obviously having bad days. My bad days are related to stress, ⁓ you know, work, if they’re related to ⁓ interactions with people that don’t go the way that I preferred. They’re related to ⁓ what the stroke still does to me after 14 years. ⁓ It still causes neurological imbalances. still causes
tightness on my left side, know, that tightness causes dysfunction on my right side, you know, the body goes out of whack. And if I catch it, if I have a bad night’s sleep, things get thrown out and it’s hard to, ⁓ it’s hard to always navigate it and be effective at catching it and then doing something about it, you know, cause you’re human, you get distracted, et cetera.
Pete Rumple (55:38)
Well, and Bill, you’re bringing up great points because as I transition back to work, I’ll have some potential potholes that I don’t have right now. So I’m very, I’m very conscious of what I’m going to go back into. Now. I love, I love work. It’s my sport and I love it. But, ⁓ and today I have now.
bad moments, not bad days. Maybe those occurred, but I’m going to try to stave that off. But that’s just how it is now. as of as of now, that’s that’s the update, if you will. Yeah.
Resilience and Consistency in RecoveryBill Gasiamis (56:25)
Yeah. Okay. I like that you said that about work, like there’s gonna be some potholes with if you’re doing the type of work that you’re doing. ⁓ That’s pretty high level and high stress and intense for ⁓ at some stages, it could be right, you’re talking at organizations that are going through a hard time that are looking to you to solve their problems, so to speak, or to support them solve their own problems. So ⁓
You know, the ramping that up is gonna need a little bit of thought so that you don’t go too far into that type of work without realizing how far in you’ve gotten.
Pete Rumple (57:10)
Absolutely right, Bill. You’re absolutely right. And look, I’m going to try to be as bulletproof as I can. The good news is I’ve been doing this work my whole career. So it’s been 40 years. So I don’t think I have to micromanage or get to like, I think I can find the right balance if I can’t.
I’ll go to a lesser job and do something else. But so I realize, especially because I can get pretty intense. So ⁓ I realized that is a risk, a very real risk. I’m not shying away from it. I’m not saying, don’t worry. yes, there is stuff to worry about, but I’m gonna, I’m gonna test and learn.
Test and learn is what I always do. Test it and learn, can I do it, not do it, do I have to do different, do I have to do something else?
Bill Gasiamis (58:14)
Yeah, brilliant. How old are you now?
Pete Rumple (58:17)
61.
Bill Gasiamis (58:18)
Okay, so at 61, most people are thinking about retiring. What are you thinking starting a new business at 61?
Pete Rumple (58:25)
Well, mean, Bill, look, let’s be honest, I think the last three years off. So I have some ⁓ room left in the battery. But I mean, part of the reason for this type of job, Bill, is because if we do this, we run it. And we’ll decide how we take care of clients, how we work and all that.
And if I have to take on less, take on less. If I can take on more, take on more. And I’m gonna, like everything else, I’m gonna figure it out one step at a time, Bill. And I, you know, I don’t have the answers, but I’m gonna find them.
Bill Gasiamis (59:11)
And retirement’s not really in the frame for you. Like it’s not something that you’re thinking about, like to ⁓ officially retire, know, step away from the day to day and just, you know, go and sail off into the sunset type of thing.
Pete Rumple (59:24)
Yeah, I think to your point, Bill, like if I can make this work, I’ll probably work through my 60s. If I can’t, then I’ll have to probably hang it up earlier or do something lighter. And if that’s the way to be healthy, so be it. I’ll do that.
Bill Gasiamis (59:43)
What else does work bring you though? Because it doesn’t just bring work income. Like it brings more than that. Like for you, I feel like it’s more than just I’m making a wage or bringing in some money or whatever. What else does it bring?
Pete Rumple (1:00:02)
Yeah, it’s it’s competitive, Bill. It’s it’s my sport. You know, so hitting the numbers in a month and a quarter and a year. That is the scoreboard for what I do. And if you if you do it well, you can do really well and be very happy and influence a lot of people’s lives in a positive way. And if you don’t, it can be really awful. So
Fortunately, I’ve been on the right side of that for a long time and I want to get back to it and no ego stuff I just I want to I want to
I want to have an impact and I want to enjoy my sport.
Bill Gasiamis (1:00:48)
Fair enough. Even in your unhealthiest and heaviest before the stroke, were you this energetic? Did you have this same amount of energy?
Pete Rumple (1:01:00)
I’ve always been energetic, Bill, but I couldn’t operate like I do now. Like my sleep is wonderful. I go hard at the gym. I do projects. I volunteer. Like I’ve been readying myself for coming back in. And look, if I can, great. If I can’t, I’ll adapt.
Bill Gasiamis (1:01:27)
Yeah. I know when I went back to work, uh, well, I had to, I had to pause my business. have a painting and maintenance. Yeah. I had to pause it. I had to go back into an office, very basic admin role, like low level, but it was so hard being at work, sitting in front of a computer for eight hours a day. We started, I started that job in 2016 and finished in 2019. By the time I got to 2019.
Pete Rumple (1:01:36)
I remember.
Bill Gasiamis (1:01:57)
I was way more capable of going in focusing on the task at hand and doing the work that needed to be done and then being able to be okay to do the drive home because at some point at the beginning I wasn’t really able or up to the task. But I kind of built ⁓ the muscle again and then got to that stage where by 2019 it was fine. So some people might find going back to work like
You know, retraining that muscle of being at work and working and focusing and all that kind of stuff. They might find that it’s gonna take a little bit of time to get there and you might have to step back. You might have to decrease the days, decrease the hours and then go again and then try and find where the threshold is, see if you can exceed it and then see how far you can push it and reflect a year, 18 months, two years.
Pete Rumple (1:02:38)
That’s right.
Bill Gasiamis (1:02:56)
down the track back to notice how far you’ve come.
Pete Rumple (1:03:00)
Yeah, right on Bill. I mean, I’m gonna have been out of it for 42 months, probably when I go back. So I hear you loud and clear, and it would have been really tough to do it.
before now.
Bill Gasiamis (1:03:20)
Yeah. Yeah. And you did have a you had a goal to get back to work a lot earlier.
Pete Rumple (1:03:29)
Yes, that’s right. And ⁓ that’s another thing, Bill, like I’ll set an intention to do something. I’ll go for it. I’m not ready. I’m not gonna, I’m not gonna do it wrong. I’m not gonna hurt myself. So I set a goal. I try to manifest it, but if I have to push it, I push it.
Bill Gasiamis (1:03:51)
Yeah. Just before we spoke and started this episode, you’re you apologize for wearing a hat, which is was unnecessary ⁓ because you have a scar on your head because there was a skin cancer found. And before it became a thing, the you got you had it removed. That’s right. So now when
So I wanna understand like your mindset now compared to before when you come across ⁓ an issue like that, a health, potentially health issue for people. How do you navigate that now compared to how you might have done things before? ⁓
Proactive Health ManagementPete Rumple (1:04:38)
Beautiful question. Yeah, I used to avoid all that stuff. I avoided the doctor. I don’t want to do this. I want to there’s always a reason to do something else. Now I lean in, I pay attention, I learn I go in, I may agree or not agree with the doctor on certain things. But especially now because I can think again, took me a couple years. But yeah, I lean in.
I want to I want to get in there. I want to know what’s wrong. What’s right. What have you just had my annual exam two days ago ago. It went great. Labs came back great. I I my neurologist that I used to have to ⁓ visit quarterly said Pete I don’t even need to see you annually now. Just if you need me call me. Other than that you’re good to go.
And she said, we have not seen this kind of recovery before from what you had.
Bill Gasiamis (1:05:43)
Yeah, I have a similar experience when I was in hospital. They booked me in for two months. I was out in a month ⁓ in rehab and I feel like they should have asked me what I was doing because
It’s really important for people to know the difference between being passive and waiting for somebody to rehabilitate you or being the person who’s driving your own rehabilitation. Like there’s a massive difference and
Pete Rumple (1:06:13)
Huge difference, Bill. You’re right. Huge difference. mean, last last call, I talked to you from my sister’s house in December, just a couple months, few months after it, I made the decision to move out on my own, which I did, which really stunk, Bill. That was hard. Like, I there were some nights I couldn’t eat. I was like, I can’t I’m either gonna make the
the bed or the kitchen, which am I doing? Bed. And I just do it. And but it was important. It was important to start knowing where I could push and not being too reliant.
Bill Gasiamis (1:06:59)
Yeah, yeah, the less reliant you can be the better, but still also good to be able to rely on people when you need a little bit of support.
Pete Rumple (1:07:05)
Right
on. Absolutely. don’t, you know, it was, there’s not a right or wrong. It’s like, what do you think? What’s your gut?
Bill Gasiamis (1:07:14)
Yeah. Now let’s do a little bit of a community service announcement about this skin cancer. A, how did you notice it? ⁓ What were the steps that you took after you noticed it? How long did you take? Why did they remove it? And so on. Give us a little bit of information. There’ll be people listening here who ⁓ may have noticed a little bump or a lesion or something on their face, their head, their arm, whatever. Give us a little bit of an understanding of how that came to be.
Pete Rumple (1:07:43)
absolutely the one thing I’ve done Bill through my life as I’ve stayed disciplined on the dermatologist and I don’t know why I think it’s how I was raised everything else I skipped but the dermatologist I stayed on top of and to your point if I notice something and it seems pervasive like it’s not going away
I have it looked at and they’ll cut a piece away and see if it’s ⁓ emerging as a basal cell or a potential skin cancer. And that’s what I had with this. was on my head and it was not going away. They took a little piece of it and they’re like, yep, that’s a basal cell. So definitely do not let that grow. At least get it looked at and get
an opinion on what it is then decide from there.
Bill Gasiamis (1:08:45)
What’s a basal cell? Is that something that’s benign?
Pete Rumple (1:08:49)
It’s like pre-cancerous it it can I’m not sure exactly but it’s like my fourth one but because I was in the sun a lot bill and ⁓ growing up and I have red hair and I have a fair complexion so my mother had done a great job with the sunscreen I don’t think God is as good a job as she did when I was younger but
Yeah, it was very important because that can get lethal fast.
Bill Gasiamis (1:09:23)
And do you think because of your skin tone or the lack of melanin and your ⁓ red hair, your heritage basically, right, that you made a point of being married?
Pete Rumple (1:09:37)
Yep, I’m more prone to it. Absolutely. Yes.
Bill Gasiamis (1:09:41)
Yep. ⁓ I wear a hat all the time, especially if I’m out and about. And my favorite hats are like, you know, round brim cowboy style or outback style type of hats.
Pete Rumple (1:09:54)
Greg
Norman hats, Greg Norman hats.
Bill Gasiamis (1:09:57)
Yeah, not so, not so Greg, but yes, I’m like, think, think handsome, good looking ⁓ stockman herding cattle on the back of a horse. Think that kind of hat. That’s what I wear. ⁓
Pete Rumple (1:10:14)
Gotcha. I love it.
Bill Gasiamis (1:10:17)
Yeah, but, if it’s if I’m out and about in a all day type of scenario event, wherever, and there’s a lot of sun, I’ll wear one of those, otherwise, I just wear a cap. And it makes a huge difference, especially when you have short hair, or you have thinning hair or bald hair. It just protects the skin more. And it makes a difference. But the good thing about technology now is it’s so advanced as you can
spot these things early and you can get them treated and yeah, and you can be okay. And if you are prone, it’s good to be take preventative steps. I like that you previously ignored things and you didn’t go to the hospital and you didn’t think of it as an important thing. Whereas now you tackle it, you’d rather know, you’d rather do something about it, you take preventative action than wait for it to escalate and turn into something
more sinister, which surprises me that humans would do that with their health and well-being. While they wouldn’t do that at work as a CEO, you wouldn’t avoid an issue, you would tackle it head on and you would make sure that you, that that issue didn’t escalate into something unnecessary.
Pete Rumple (1:11:40)
right and Bill that’s part of the problem right because you start saying well I do this at work all the time but you don’t do it for you and it’s got to be consistent in every part of your life.
Bill Gasiamis (1:11:56)
Yeah. Consistency, that’s great thing. And it needs to go through all aspects of your life, all avenues of your life. For example, if you’re going to ⁓ look after your health and wellbeing at home, or when you go out with somebody who has a different idea about nutrition, ⁓ the hardest part that I find is being around other people who drink, for example.
Pete Rumple (1:12:24)
Right.
I remember you talking about that. Yes.
Bill Gasiamis (1:12:27)
and those conversations that you have to have with people, you have to build the skill of saying, I don’t do that, I don’t smoke, I don’t drink. I’m not saying you shouldn’t when I’m with you, or you don’t, or better if you didn’t, but you do you and I’ll do me. Like I’ll just be consistent with how I behave at home. I’m gonna behave like that when I’m with a group of people who prefer to smoke or drink or not eat the way that I am. You know, that’s the…
key message there. If you can just be if you’re your what’s the word I’m looking for if you can have ⁓ it be part of your identity that I don’t behave a certain way or I do behave a certain way or then it’s easier to be able to implement it across all facets of your life and not ⁓
be influenced in a negative way. Because I find personally, if I get influenced in a negative way for the smallest thing and I take the bait, for example, it could lead to a behavior that I don’t want to be doing that I start redoing and I start redoing it for a longer period of time than I would have preferred. Like I wouldn’t smoke, but if I picked up a cigarette and had one, I used to enjoy them so much that I feel like
I might find myself in a situation where I’ve bought a packet of cigarettes at the end of the first week and now I’m into that crazy habit and trying to work out how I got there again. And it was because I remember trying to give up a lot of times. was because I made, always it was because I made excuses when I was with other people.
Pete Rumple (1:14:18)
That’s what I said earlier. Yeah, that’s what I was doing, Bill. And you know, what I do now is I, at any given time, I think deeply about what are the three words I use to describe myself now? And my now is resilient, consistent, and unafraid. Those are my three words. And I constantly kind of
triangulate and tune on that and say, okay, what, where am I now? And I look at what, are my three words? And those are the three that define me now, because the consistency, the bouncing back and the resilience and the unafraid is like, to your point, if everyone’s doing one thing, I’m going to do my thing. And I’m okay with that.
Defining Identity Through ResilienceBill Gasiamis (1:15:11)
Yeah, I love that. That you have three words to define yourself now that you’ve given yourself a title.
Pete Rumple (1:15:18)
Yes, and it may change, but it has changed over time. But I just I really try to be honest with myself and say, where am I now?
Bill Gasiamis (1:15:30)
Yeah. And I like it as well. That fact that it’s changed, it’s flexible, like it’s not necessarily to be rigid and concrete in that it’s like a mindset, like it can shift and alter. And you can work towards something. And you can perhaps master being resilient, perhaps master it, I don’t know, you could probably get real better at it. Maybe mastery is not always possible. But then you could allocate those resources to a new
Bye!
Pete Rumple (1:16:00)
And to your point, Bill, you can get competent and then maybe build to mastery if it’s important enough.
Bill Gasiamis (1:16:06)
Yeah. Yeah, I love it. You know, what’s really good about this ⁓ interview is that people are going to be able to go back to the original interview. Have a listen. Yeah.
Pete Rumple (1:16:18)
Yeah, I was thinking about that. You’re right. Yes.
Bill Gasiamis (1:16:21)
just so that they can see the difference so that, like I said at the beginning of the interview, we could offer people hope and every journey is different and every stroke recovery is different and every stroke injury is different. But ⁓ every person has the possibility and the opportunity to improve their situation. And usually that won’t come from
the medical team. The medical team will improve the medical side of it and they’ll make you able to go home. But then the other work that needs to be done is up to you. And if you have some examples of people who have done that before, which is what I hope I am, and what I hope a lot of my guests are, Pete, you’re obviously one of those people, then what we could do is hopefully create that
trigger in people’s minds to go, Bill and Pete said that, you know what, I’m going to look into that. I’m going to read that book. I’m going to ⁓ check out that AI. I’m going to discover what I can do that doesn’t cost me any more to improve one thing in my life. You know, whether it’s just meditating on what the proper walk according to you looks like at home, in your bed.
the morning that you wake up and then the evening before you go to bed while you’re still recovering your walking. Right? Why not?
Pete Rumple (1:17:53)
Yeah, and Bill, you’re absolutely right. And the imagery I try to have people understand is almost like lily pads across the lake or the water.
Get to a lily pad, then get to the next one. Don’t worry about boiling the ocean. Don’t worry about what it’s going to be in months or year, step by step. And just keep pushing. When your body says don’t push, don’t push. But when you can, and before you know it, you’re kicking ass and you’re
getting momentum.
Bill Gasiamis (1:18:42)
I love it. What a beautiful way to end the podcast. Thank you so much for reaching out to be on the podcast again. I really appreciate you sharing your story and then giving people an insight into what it was like for you, ⁓ nearly what, three years down the track.
Pete Rumple (1:18:58)
Yep, absolutely Bill. My pleasure and thank you again for all the work you’ve done.
Bill Gasiamis (1:19:03)
What an amazing episode. Pete Rumpel 38 months out from a massive hemorrhagic stroke wheelchair to crossfit, 337 pounds down to 205, 17 medications down to two and a new business launching at 61. The things that stood out to me the most, Pete’s decision in hospital to fast and take back the one thing he could control. The AMCC research, doing the things you hate most on purpose to grow the brain.
Visualization as a daily recovery tool and the lily pad image. Don’t try to cross the whole lake at once. Just get to the next lily pad. If today’s episode connected with you, please subscribe, leave a review and a comment and share it with someone who needs to hear it. That’s genuinely the best way to help this show reach more stroke survivors. Before I go, heartfelt thank you to my Patreon community. You are the reason this podcast stays free and independent for every
stroke survivor who needs it. I want to give a special welcome to the supporters who have joined us so far this year. Keith, Nina and Charmaine, thank you so much for believing in this work. It means everything to me and to every one of our Patreons.
Brian, David, David, Cecilia, Sean, Kim, Jeff, Jordan, Hoyt, William, Mark, Alessandro, JK, Heather, Keith, Nina, and Charmaine, thank you.
thank you as well. I really appreciate your support. I am truly humbled that you feel it is a worthy cause to support. And if you’d like to support the show, you can go to patreon.com/recoveryafterstroke. Every contribution, no matter the size makes a real difference to the people who find this podcast when they need it most. And finally, my book.
If you’re in recovery right now and you want a roadmap built from real lived experience, not clinical theory, it’s called the unexpected way that a stroke became the best thing that happened. Everything Pete and I talked about today is in there. Grab it at recoveryafterstroke.com/book. The link is in the show notes. I’m Bill recoveryafterstroke.com/book. The link is in the show notes. I’m Bill Gasiamis. Thanks for being here. I’ll see you in the next episode.
The post Life 3 Years After Stroke: Pete Rumple’s Remarkable Road from Wheelchair to CrossFit appeared first on Recovery After Stroke.
Stroke Effects: What a Hemorrhagic Stroke Did to JakeStroke effects aren’t always obvious. Some show up immediately. Others arrive quietly, long after the hospital discharge papers are signed. For Jake, the stroke effects didn’t end when his life was saved; they began there.
Four months after a hemorrhagic stroke, Jake can walk, talk, think clearly, and hold a conversation that’s thoughtful, articulate, and reflective. To someone passing him in the street, he might look “lucky.” But stroke effects don’t ask for permission to be visible. They live beneath the surface, shaping movement, sensation, pain, identity, and recovery in ways few people prepare you for.
This is what stroke did to Jake.
The Stroke Effects That Came Without WarningBefore his stroke, Jake’s life was full and demanding. A husband. A father of four. An administrator coordinating drivers and operations. Active. Fit. Always moving toward the next opportunity.
But in hindsight, the stroke effects were quietly signaling their arrival.
Jake experienced severe headaches with a rapid onset. Nausea. Vomiting. Visual disturbances. At the time, they were dismissed as migraines. His blood pressure had been flagged as “pre-high” years earlier while living overseas, but after returning to Canada, he found himself without a regular doctor in an overloaded medical system.
These were early stroke effects masquerading as manageable inconveniences.
When the hemorrhagic stroke finally hit, it did so decisively, affecting the right side of his body, disrupting speech, movement, sensation, and cognition all at once.
What Stroke Did to His BodyOne of the most misunderstood stroke effects is how specific and strange the deficits can be.
Jake didn’t just “lose strength.” He lost motor planning.
When he tried to write the letter T, his brain sent the wrong instruction. Instead of a straight downward line, his hand looped as if writing an L. The muscles worked. The intention was there. The signal was wrong.
To retrain that connection, he didn’t practice ten times.
He practiced thousands.
This is one of the realities of stroke effects: recovery isn’t about effort alone, it’s about repetition at a scale most rehab programs don’t explain clearly enough.
Post-Stroke Pain: The Stroke Effect No One Warns You AboutIf there’s one stroke effect that dominates Jake’s day-to-day experience, it’s pain.
Not soreness.
Not discomfort.
Neuropathic pain.
Jake describes it as:
- Burning sensations
- Tingling
- Tightness, like plastic strapping wrapped around his limbs
- At its worst, a “12 out of 10” pain, like being tased while his hand is on fire
This kind of post-stroke pain often resets overnight. One morning, he wakes up and feels almost normal. The next, the pain returns without warning, severe enough to stop him in his tracks.
This is a stroke effect that confuses survivors and clinicians alike because it doesn’t follow logic, effort, or consistency. It simply exists.
And for many survivors, it’s one of the hardest stroke effects to live with.
The Non-Linear Reality of Stroke EffectsStroke recovery doesn’t move forward in a straight line. Jake learned this quickly.
One week brings noticeable gains.
The next feels like a regression.
Then progress returns quietly, unexpectedly.
This non-linear pattern is itself a stroke effect.
Early on, these fluctuations feel frightening. Survivors worry they’re “going backwards.” But over time, patterns emerge. Rest days aren’t failures. They’re part of recovery. Silent healing days matter just as much as active ones.
Understanding this changed how Jake viewed his recovery and how he measured progress.
Identity Loss: An Overlooked Stroke EffectSome stroke effects don’t show up on scans.
Jake wasn’t defined by his job, but work still mattered. Structure mattered. Contribution mattered. After the stroke, uncertainty crept in.
Would he return to the same role?
Could he handle the same responsibility?
Should he?
Stroke effects often force people to renegotiate identity, not because they want to, but because they must. The question shifts from “What do I do?” to “Who am I now?”
For many survivors, this is one of the most emotionally demanding stroke effects of all.
Recovery Begins With Action, Not PermissionWhile hospitalized, Jake made a decision.
He wouldn’t wait passively.
He brought in notebooks. Pencils. Hand grippers. Hair clippers. He practiced shaving, writing, and gripping, no matter how long it took. If writing the alphabet took all day, that was the day’s work.
By discharge, his writing had moved from scribbles to cursive.
This wasn’t luck.
It was intentional engagement with stroke effects, meeting them head-on instead of avoiding them.
What Stroke Effects Teach UsJake’s experience reveals something important:
Stroke effects are not just medical outcomes.
They are lived realities.
They affect:
- How your body moves
- How pain shows up
- How progress feels
- How identity shifts
- How hope is tested
And yet, understanding stroke effects, naming them, and normalizing them can reduce fear and isolation.
That’s why conversations like this matter.
You’re Not Alone With These Stroke EffectsIf you’re early in recovery, you might recognize yourself in Jake’s story.
If you’re years in, you might recognize where you’ve been.
Either way, stroke effects don’t mean the end of progress. They mean the beginning of a different kind of journey, one that rewards patience, repetition, and perspective.
If you want to go deeper into recovery insights, lived experience, and hope-driven guidance:
- Learn more about the book here: The Unexpected Way That a Stroke Became the Best Thing That Happened
- Support the podcast and community here: Recovery After Stroke Patreon
Final ThoughtStroke effects don’t define who you are, but they do shape how you recover. Jake’s story reminds us that recovery isn’t about returning to who you were. It’s about learning how to live fully with what remains and discovering what’s still possible.
Disclaimer:
This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
Living With Stroke Effects You Can’t Always SeeJake reveals the stroke effects that remained after the hospital—pain, motor issues, fatigue, and how he’s navigating recovery four months on.
Highlights:
00:00 Introduction and Background
05:10 Health Awareness and Signs
16:56 Personal Health Journey and Challenges
23:11 Recovery Process and Emotional Impact
38:28 Attitude Towards Recovery
46:30 Long-Term Recovery and Reflection
55:06 Work and Identity Post-Stroke
01:07:40 Pain Management and Coping Strategies
01:16:16 Community and Shared Experiences
Transcript:
Introduction and BackgroundBill Gasiamis (00:00)
Today’s episode is one that really stayed with me long after we finished recording. You’re going to meet Jake, a stroke survivor who is very early in recovery and navigating the reality of what stroke actually does to a person long after the emergency has
What makes this conversation so powerful isn’t just the hemorrhagic stroke Jake experienced. It’s how openly he talks about the stroke effects that followed. The pain, the confusion.
the nonlinear recovery and the parts of stroke that are hard to explain unless you’ve lived them.
I won’t give away Jake’s story that’s his to tell, but I will say this. If you’re early in recovery or you’re trying to make sense of symptoms that don’t quite fit the brochures or discharge notes, there’s a good chance you’ll hear something in Jake’s experience that feels confronting and reassuring at the same time.
Now, before we get into the conversation, want to pause for a moment and say this, everything you hear, the interviews, the hosting, the editing exists because listeners like you help keep this podcast going.
When you visit patreon.com slash recovery after stroke, you’re supporting my goal of recording a thousand episodes. So no stroke survivor has to ever feel like they’re navigating this
if you’re looking for something you can lean on throughout your recovery or while supporting someone you love my book, the unexpected way that a stroke became the best thing that happened is available at recovery after stroke.com slash book.
It’s the resource I wished I’d had when I was confused, overwhelmed and trying to understand what stroke had done to my life.
all right. Now let’s get into the conversation with Jake.
Bill (01:40)
Jake Bordeaux, welcome to the podcast.
Jake (01:42)
Hi Bill, how are you this evening?
Bill (01:44)
I’m very well my friend. It is morning here. Just gone past 9am. We had a late night last night. We went to the opera and we saw Carmen.
Jake (01:57)
Hmm. How’s that?
Bill (01:59)
And for those who haven’t seen it, it’s in French and you have to read the subtitles because it has subtitles. I couldn’t read them because I was just a little too far. So I was squinting the whole night. But it’s a great opera, it was a great show, but we got home late so I’m quite tired.
Jake (02:20)
I couldn’t imagine that. Luckily I do speak French. So I wouldn’t need the subtitles, but that’s something I was afraid of actually, you know, coming out of the stroke is I was afraid almost that I had forgotten how to speak French or that I’d forgotten how to speak both languages. But luckily I speak ⁓ English and French.
Bill (02:40)
With a name like Bordeaux, I would definitely expect you to at least have some idea of French.
Jake (02:45)
Yes, indeed, sir. Half English and half French. I’ve been using that largely to my advantage. I’d been working up here in Northern Ontario with Federal Express. So I was working in administration here and sort of coordinating the management and the drivers being the liaison during the two during the day. so, you know, anytime the drivers might have equipment that needs any kind of repair or any kind of issues they might
come up with on road as well as when they leave the station and when they come back into the station, I’m the guy that they would deal with.
Bill (03:22)
Wow, that’s cool. So tell me what was life like before stroke for you? What were you up to? What kind of things did you do? How did you spend your time?
Jake (03:33)
Well, life has had a lot of ups and downs for me in the last year’s bill. So, ⁓ I had been living for many years in, in Hong Kong and I’m originally from Canada and, I was born in the seventies, born in Ontario here. And by 2009, I had had various, you know, done grit, various career, choices or opportunities, job opportunities here. And I decided to.
try my hand at a little something overseas. ⁓ I had an opportunity with a fellow Canadian named Noah Fuller who brought me over wanting to show me how to get into the watch business. And being two ⁓ enthusiasts, you know, being, ⁓ you know, I’d say we were into watch modification, watch restoration, and we were wanting to get a little bit more into building custom parts and building out custom watches.
⁓ working with various ⁓ people, military groups, et cetera, at working on their watch project. So he asked me to come to Hong Kong, learn everything that he knew about the business, and hopefully show me what I was gonna get into over there. That worked out, and while I was over there, I met my wife, I love my wife, I’m still with her.
Stroke Effects: Health Awareness and SignsI got together with my wife in 2009 when I had first arrived in Hong Kong and I got married to her in 2010. During that time, Noah unfortunately passed away, so I lost my business partner, but the business continued to grow. So over the years, the business grew with my wife and I running that on our own. ⁓
Unfortunately, maybe it got some of the attention on the world stage. There’s been a lot of political, we’ll say issues in Hong Kong and leading into the pandemic, business was already suffering. ⁓ Once the pandemic hit and Hong Kong was locked down for a ⁓ big chunk of time.
that really affected our business and took it down. By the time the pandemic had played its way out, our life over there was looking like it wasn’t panning out the way we’d wanted it to. And a lot of the opportunities that had been unfolding for us all of a sudden came to a close. ⁓ So we moved back to Canada.
about two years ago and I started working up here and thinking about our next business opportunity. I’m a lot like you and I’m never really satisfied with what I’m doing and I kind of want to reach for the next thing and I kind of want to reach for more. So I like to work a lot. So while I was working on getting the next thing started, I was working with Federal Express.
My days would be really, really busy. I would get up quite early in the morning and I’d chop wood here. I have a dog that I like to walk. I have a golden retriever. I have four children. So I have three girls and a boy and they’re ranging from four years old to 14 years old. They’re all in school.
And of course, I was working full time at Federal Express and ⁓ working towards the next thing. So I guess life was pretty active.
Bill (07:27)
Pretty helpful. Did you have any sense that, you know, with regards to your health, things might take a turn? Was there any information coming to you that you might see now kind of in hindsight and go, well, that was probably a sign.
Jake (07:45)
Yeah, Bill. So I’ve watched a lot of your podcasts and I found them particularly helpful, especially a lot of the ones relating to hemorrhagic stroke. ⁓ Reason being that’s what happened to me. So ⁓ I had a hemorrhagic stroke ⁓ and it took out a large part of ⁓ my capabilities, I guess, mobility on my right side.
So a lot of my body that’s affected is my right side. ⁓ Now, when I got back here from Hong Kong to Canada, unfortunately, I came here to a little bit of an overloaded medical system, to say the least. So I’m hoping that maybe some of what we’re talking today might help people who are in Canada if they suffer the ⁓ same thing as I did to try and get them on track for us, get them back into recovery. ⁓
When I arrived here, the system was overloaded. I didn’t have a doctor. So unfortunately, while I had been warned for several years that I had pre high blood pressure and ⁓ the doctors in Hong Kong had been, you know, monitoring my blood pressure and keeping a pretty close eye on things after arriving here in Canada, that wasn’t a case. And so
you know, it would look now that I think about it, that I was having some warning signs. I was having headaches and I’d say that some of those headaches were pretty severe. ⁓ The headaches would come on like a, like a very fast, ⁓ fast onset headache. I would get very nauseated very quickly. ⁓ And then sort of, would, I’d vomit the headache.
would pass. At first, I thought I was getting migraine headaches. I’d had one when I was a lot younger. But ⁓ these were coming with some visual disturbance. I was having this horrible headache. was having nausea. So all the things you might expect from a migraine, except that it was going away within minutes and all of a sudden I was back at work. you know, in hindsight,
that definitely was ⁓ a warning flashes. And ⁓ had I had a proper physician, if I had somebody watching out for me, they may have caught that. I don’t know, there’s no way for us to know that. So what I would say is, if anybody’s having pretty high blood pressure, keep an eye on that. I would say my blood pressure when I had the stroke was quite high.
And if I had been monitoring that, I might’ve been on top of it. So would you like to hear about the day that it happened or?
Bill (10:45)
Yeah, I would in a moment. So with the blood pressure in Hong Kong, were you being monitored and also medicated or was it just you were being monitored?
Bill Gasiamis (10:56)
We’ll get back to Jake’s story in just a moment.
I want to pause for a second and ask you something important. Why do you listen to this podcast?
For many people, it’s because they finally hear someone who understands what they’re going through or because they learn something that helps them make sense of their own stroke effects without feeling overwhelmed or alone.
And here’s the part most listeners never really think
podcast only exists because people like you help keep it
There’s no big company behind it. No medical organization funding the work.
It’s just me, a fellow stroke survivor doing everything I can to make sure these conversations are available for the next person who wakes up after a stroke and doesn’t know what comes
One of the biggest challenges after stroke is finding reliable information without spending years searching, reading and second guessing yourself.
That’s why I want to mention turn2.ai.
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All right, let’s get back to Jake.
Jake (12:46)
No, so I wasn’t being medicated for high blood pressure at all. was kind of these, well, it’s not quite severe enough to really do anything about it, so we’ll just keep an eye on it. ⁓ I did have pre-existing ⁓ medical issues. When I was quite a lot younger, I had suffered from ⁓ what some people might call Crohn’s disease or an inflammatory bowel issue.
and I had some back pain. But other than that, I wasn’t really on any other types of medications. I wasn’t on any kinds of blood pressure medications, any kind of heart medications. ⁓ I wasn’t on any kind of antidepressants or anything like that. ⁓ I would say that I was pretty much feeling like I was in fairly good shape.
haven’t gained or lost a heck of a lot of weight since the stroke. So what you see is what you get. wasn’t overweight. I wasn’t eating a lot of junk. I don’t smoke cigarettes. So.
Bill (13:56)
Yeah. One of those things. I know what you mean. Like I’ve been diagnosed with high blood pressure in the last six months and headaches. Jake, I’ve had headaches for years. I’m talking maybe four or five years. And at the beginning, they were intermittent. They would come and go similar to what you mentioned. And I would be able to get through the day. And I thought they were migraines, although nobody really convinced me that they were migraines. I couldn’t really say.
That sounds familiar if I look up what migraine is and all the people who I’ve ever asked about a migraine, it never sounded like, I was never convinced by it. And then a little while ago, was at home, excuse me, I was at home with my wife, feeling really unwell. Did my, checked my blood pressure and it was about 170 over 110, 120, somewhere there. And that was, I knew that’s way too high, know, previously.
I’ve checked my blood pressure maybe on the on perfect day and it was 120 over 80. So for me that was pretty serious. We went to the hospital because of all my history and they said your blood pressure is high. It’s probably a migraine causing you to have a migraine which is then causing your blood pressure to go high rather than the other way around. They didn’t say it’s high blood pressure is causing the migraine and or the headache.
And then they put me on some migraine medication and they said, if we give you this migraine medication, it’s going to knock you out. You’re going to sleep, but you should wake up without a headache. Well, I woke up with a headache. The migraine medication didn’t do anything. So within a couple of weeks of that particular hospitalization and then going to my general practitioner, he prescribed me a blood pressure medication, came to start on it’s called to help keep the blood pressure down.
Now I’m trying to get to the bottom of why do I have high blood pressure? That’s the part that’s frustrating me, because no one can tell you why you have high blood pressure unless they check your arteries and they’re half clogged or you’ve got some other issues with your heart or something like that. And I don’t have any of those issues. So now ⁓ it’s one of those things. It’s kind of like, well,
you have high blood pressure. It might be something that runs in your family. When I check with my dad, my dad says that he has high blood pressure. My dad’s 84. So it’s like, you know, and he says, I started taking blood pressure medication at around 50, which is my age. But that’s still, that’s not good enough for me. Like I’m still not comfortable with, well, your dad did. So you are, and then therefore,
just move on with life, take this tablet and then move on. Now I’m happy to take the tablet because I do not want to have another hemorrhagic stroke. I’m very comfortable taking a tablet to prevent that, right? No trauma, no traumas.
Personal Health Journey, Stroke Effects, and ChallengesBut ⁓ it’s a very interesting place to find myself in after going through all the three brain hemorrhages that I’ve already had since 2012, brain surgery, learning how to walk again. Now I’ve had enough. I don’t want…
I don’t want to be doing this anymore, even though I am finding myself here and I’m tackling it. Part of me is going, man, this is too much. Why do we need to go through this now?
Jake (17:29)
Yeah, I wanted to ask you something actually, maybe if you’ve had the same, you brought something back to mind here, is that one thing I did have, again, in hindsight, I had visual disturbance. in 2018, my grandmother, bless her shit, my grandmother passed away and I was abroad and I took it pretty hard. was largely raised by my grandfather, my grandmother.
And I took it, it was very emotional. And ⁓ when I was grieving, I had an episode where I had a rather bad headache. And again, I had one of these feelings, like I thought I had a migraine headache. Maybe I did, or maybe we’re reading something into it. But coming out of that, I had a visual problem.
And it was one of my eyes. in my right eye, you know, again, I have my issues now with my right hand side. My right eye had gotten quite blurry. I was having ⁓ issues with my vision in my right eye. And ⁓ a doctor had decided that, well, maybe it’s a form of macular degeneration. And he decided to do a laser surgery.
at the time in Hong Kong. However, it didn’t have any effect. It didn’t help me out at all. And the only thing that helped that was time. And I wonder again now if the reason why treating the eye didn’t take any effect is because he should have been treating or looking at the brain. I think that maybe the issue might have been a small stroke to begin with.
and I didn’t realize it at the time.
Bill (19:25)
That sounds very plausible, right? That’s I think probably a very logical conclusion to get to. Sometimes, you you hear people lose their vision and the way they discovered they’ve had a stroke is they’ll go to the ophthalmologist and they’ll say, I can’t see. And the guy will go, well, your eye looks perfect. I there’s nothing wrong with your lens. There’s nothing wrong with the macula. The eye pressure is fine. Everything’s fine. And that definitely suggests
that there is a ⁓ neurological issue of some kind, right? So it’s like, next step is go to the hospital, get it checked out. But ⁓ yeah, well, there’ll be no way of knowing, but I science, I had similar kind of things happen about a year and a half before my first bleed. was at our local football here, which ⁓ my team made the
what we call the grand final. There’s usually a playoff series and then the last two teams get to the final game of the year and then the one that wins wins the championship. And my team made it and I was there cheering them on, screaming my head off, you know, just being a really passionate supporter and went home that weekend with a massive headache that lasted about five days and ended up in hospital. They did a lumbar puncture. They checked for
a brain hemorrhage or anything along those lines and they didn’t find anything and they also didn’t find the faulty blood vessel that later would cause the first brain hemorrhage. But when I speak to people about it, everyone will say, well, we’ll never know, Bill. There’s no way of knowing whether they were linked. But in my mind, it’s pretty logical to conclude that that first massive five day headache was
a sign that something wasn’t right in my brain. And although they had that suspicion of that, they didn’t know what they were looking for. So they couldn’t find the faulty blood vessel. just did a scan, a CT, sorry. Yeah, they just did a CT to actually see if there was any visible signs of a tumor or a bleed or something like that. And since there wasn’t, they weren’t able to diagnose the faulty blood vessel that would later.
⁓ bleed three times.
Jake (21:55)
That’s incredible, by the way, the three times thing, and that’s got to take a lot of strength to get through. ⁓ I don’t know if I had mentioned to you, how recent this has been. So ⁓ one thing that I’ve noticed with your podcast is that most of the guests who are on have had a considerable amount of time elapse in between when the event has taken place and when they’ve been able to get
back lot of their capabilities, a lot of their abilities. So how long exactly did it take you to get back to the stage or the state that you’re in now?
Bill (22:36)
I would say that I had, ⁓ well, the first three years were tumultuous because every time I was on the road to recovery after the first bleed, then the second bleed happened, that was six weeks apart. And then after the second bleed, I was really unwell. ⁓ Memory issues, couldn’t type an email, couldn’t read, couldn’t drive, couldn’t work.
Recovery Process and Emotional Impactangry, really angry. I was probably in that state for the best part of about six to nine months. And then it started to ease and settle down as the blood vessel stopped bleeding. And then the, and then the blood in my head started to dissipate and kind of dissolved, I suppose. And I think I thought everything was going fine. So between February, 2012 and November, 2014, that’s when I had the next bleed November, 2014.
the third one. And then when I woke up from that, I had to learn how to walk again. So by the time I got to February 2015, I had been three years in you know, in the dungeon, you know, getting just smashed around by stroke again and again and again, and then brain surgery, then learning how to walk again. And I think personally, I turned the tide maybe
at around 2018, 2019. So it took another three to four years for me to feel like even though I’m living with all these deficits, I have got enough of my cognitive function back, my physical function back to be able to go back to my painting company, which had been on pause for a number of years. yeah, so all up, you know, from first bleed,
Jake (24:25)
incredible.
Bill (24:30)
to back to the painting company, you know, it seven years. It was quite a long time. And I hear people have similar kind of stories about five, six, seven years. They’re still dealing with everything that the stroke caused, but they have some kind of a turn, like for the better, some kind of like a shift in whether it’s mindset, whether it’s emotionally or whether it’s physically, they have kind of some.
Like a fork in the road moment where things change for the better.
Jake (25:03)
That’s incredibly inspiring for me. So yeah, you give me a lot of hope because I’ve been going through a lot and I’ve only been at this for four months now. so I had this stroke in late July and upon getting into the hospital, again, I wasn’t able to talk.
I wasn’t able to use my, couldn’t move my right hand side at all. ⁓ I wasn’t able to go to the washroom, any of the things. I was basically left with kind of like ⁓ a blank slate and everything that I’ve gotten back has been pretty rapid. So I’m really extremely thankful for that, especially that, given that hemorrhagic strokes are rare, ⁓
consequences seem to be more severe and more often fatal. So, yeah, I’ve only been at this for a few months,
Bill (26:10)
Yeah, I was gonna ask what was it what happened on the day of the strike? What was it like?
Jake (26:16)
Yeah, so on the day of the stroke, let me get back there for just a second. Right, so on the day of, it was a pretty regular day and I had got up, it was a beautiful day, it was July. ⁓ My family had been on a trip recently, they’d gone to the nation’s capital and visited my family and I was happy to have them back.
I just bought my wife a new bike and ⁓ I tuned it up. The dog had been out and I was starting work at 2 p.m. So I was about to go in for 2 p.m. and see the drivers for the whole second part of their day until the closing. ⁓ And I ⁓ was biking into work. again, I was incredibly active. ⁓ So I was biking to work and it would be
generally about a 15 minute bike ride and it’s a lot of uphill, et cetera. And some of the route is through some residential areas and even some pathways that go through the woods. Again, I live in Canada and in particular in Northern Ontario in quite a small town named Kirkland called Kirkland Lake, which is a gold mining town. we’re in a gold mining boom right now.
And so yeah, I was biking to work, feeling pretty good. ⁓ When I got to work, or when I was just getting to work, I was pretty close to being late ⁓ after messing around with the kids a little bit. And so I pushed myself a little bit harder than I usually do. ⁓ I got to work right on time. I got in a little bit winded.
And I started getting my equipment together, got all of my equipment and headed to my office and headed to the window where I’d be greeting all of the drivers as they come into the station. And I started to feel a little bit dizzy. So my thinking was though, I probably just pushed it a little too hard and I probably should have had a drink of water. So I grabbed a drink of water.
And ⁓ I sat back down at my desk and the first drivers started to come in. And as they started to come in, I started to feel like it was hard ⁓ to keep track of what they were saying. I was having a hard time concentrating and that’s really not like me. Usually I’m able to concentrate on four children, a wife, a pet, myself. And when I’m at work, I’m able to deal with the whole station full of
FedEx workers, drivers, et cetera. So I started asking the drivers, can you just leave your things with me? I’m going to put them aside for a few minutes until I’m back in the game here. I think I’ve winded myself a bit. I’m just going to chill. And the equipment started to pile up, because it was one driver, two drivers.
three drivers. And as this was starting to go on, I was looking over at a lady who was working next to me in the office. ⁓ And ⁓ I’m very lucky that she was there. And ⁓ I’ll let you know why in a second. But ⁓ I started to look at her and I started to look at the drivers. And I think at that point, she looked at me and ⁓ it struck her there’s something really not right with Jake.
So she came over and started to ask me some questions and she started to try and direct the drivers away from me so that maybe they’d stop asking questions. And it became pretty apparent to her real quick ⁓ that I was having a stroke. Now, thankfully, this lady’s not usually sitting in the office next to me. It was one of those things where she just happened to be there this day and she happens to work with the fire brigade here.
and she works with first responders and she’s incredibly well educated as far as first aid and strokes and heart attacks, et cetera. So she was able to recognize what was going on with me right away. ⁓ She had management and she had everybody ⁓ take a look at me and they had the first responders coming right away. The emergency crew showed up within minutes.
and they started asking me all the appropriate questions and they started lifting me out of there and driving me away. So I got to work, I guess, at about 2 p.m. That was when my shift started. And ⁓ by 2.25, ⁓ my wife was walking home from the neighborhood park with our kids and heard an ambulance.
go by here, not realizing it was me. I’d been taken off in the ambulance. They brought me to a nearby town and then they airlifted me to Sudbury, Ontario. I guess in our nearby town, they determined that yes, I was having a stroke. They did a very quick preliminary scan. They sent me to Sudbury, Ontario, where they started doing more scans and figured out exactly what was going on.
Although the medical system had failed me and I didn’t have a doctor going into it, when the rubber hit the road there, they had it together and they got me the appropriate help as fast as possible. That’s probably what helped me to get my recovery online so quick.
Bill (32:18)
definitely does the time that you take to get to hospital makes a massive difference. That was a good outcome considering everything that was going wrong at the time. So then how does the hospital stay go? How long are you in the hospital and how does it play out?
Jake (32:37)
Yeah, so I arrived in in the hospital in in Sudbury and I was there for for a few days so ⁓ yeah, I was there for a few days and in that time my My ⁓ my wife and ⁓ one of my good friends one of our children there They managed to come and see me and from what they say I was incoherent at the time So I guess I was still able to talk ⁓
but what was coming out of me was a lot of garbled nonsense. I’ve seen some of your guests say, I thought I was saying, can you please hand me my bag and I need you to bring, and all that was coming out was sort of, blah, blah, blah, blah, like it wasn’t making any sense at all. ⁓ So I was in there for days.
And once they had me stabilized in ⁓ Sudbury, Ontario, they decided to transfer me and I had my choice between a couple of different towns. So I would say that by the 25th, 24th, 25th, I was stabilized and I was heading to Sudbury on the 25th. ⁓ Once I arrived in Sudbury, I think I was visited, ⁓
by my folks and my wife and kids. And then I was sent to Timmins, Ontario for my actual recovery. So it was pretty fast. I had the stroke on the 21st and by the 26th, I was in Timmins where I’d spend the rest of my ⁓ recovery time.
Bill (34:27)
How did they deal with leaking blood vessel?
Jake (34:30)
⁓ They didn’t. So they had determined that they were going to probably do a surgery. When they were taking me into the hospital, they had told me that there was a ⁓ brain hemorrhage, ⁓ that it was leaking, that they were going to be monitoring it, that it would be likely there would be a surgery, and that I should probably be
be prepared not to make it through. ⁓ So I guess, you know, they gave me some hope. I mean, they told me that we can hope for the best, but they were quite honest with me at the time in saying you might be going for the rest of your life ⁓ wearing diapers or unable to talk. ⁓ And it’s quite probable that you might not make it out of this.
Uh, so they monitored it and they continued to bring me while I was in the Sudbury for scans and they continued to monitor the situation. Um, but they didn’t do any surgery. So, uh, I was put on medications to bring the blood pressure down, to keep the blood pressure down. And, uh, and I was placed on those while I was in, in hospital. And I continued to.
recover all the way through August. And by the end of August, I had come back home. ⁓ while I was in hospital, I was only visited twice because it was far away from, from my home. And, ⁓ I’m honestly, Bill, I’m glad. ⁓ I was really happy. I was able to see my, my, my wife and kids by phone, obviously, you know, the wonders of modern technology. ⁓
but I was left with a lot of time on my own to reflect and I was left with a lot of time on my own to get better. you know, one of the things I decided once I got to the hospital was I’m not going to spend any time in the lounge. I’m not going to spend any of the time with the other patients who are ⁓ in here, nothing against them or anything like that. But the very first thing I did,
was I started to try and find more information about what exactly happened to me and ⁓ what are my chances of getting better and what gives me the best chances. And what I came up with was I had better start working on my recovery immediately. yeah, so one of the very first things that I did is I got my notebook into me.
notebook, got pencils, I got a pencil sharpener, I got one of those, ⁓ you know, hand gripper ⁓ exercise, you know, for your hands. ⁓ And I got a razor blade, and I got my wife and kids to bring in a hair trimmer. And I decided that no matter how long it was going to take me to shave, I was going to do that on my own.
no matter how long I thought I’m in here, I don’t have anything else to do today. If it’s going to take me all day to cut my hair and shave my face, I’m going to do that. ⁓ If it takes me all day to do the, write the alphabet down, I’m going to get through that. And I went from again, ⁓ scribbles from just scribbles and barely being able to hold onto the pencil to, ⁓ by the time I left the hospital,
I was writing in perfect cursive.
Attitude Towards RecoveryBill (38:22)
Yeah, that’s brilliant. I love that attitude. That attitude is probably ⁓ something that holds people in very, like creates a great outcomes for people, regardless of how much the stroke has affected them, regardless of how bad their deficits are, you know, regardless of what version of stroke they caught, they, they had to experience. And this is what I was doing when I was in rehab as well. So I did the same thing when I came back from hospital. So
My first stay, I came back and we were on the internet checking, you know, is a blade in the brain? What is all this stuff? What does it all mean? Trying to get some answers. The second time, ⁓ six weeks later, I was searching for what kind of food should I be eating? If I’ve had a stroke, what should I be avoiding, et cetera? That was pretty cool to find out and learn, wow, there is actually a protocol that you can ⁓ take that supports your brain health instead of one.
that doesn’t support your brain health. So that was pretty awesome. And then ⁓ in rehab, I was searching YouTube for videos about neuroplasticity. was searching videos for ⁓ anything that had to do with recovery of a neurological challenge, et cetera. And it was just way better than being ⁓ sort of worrying about my own situation and focusing on me like.
internalizing it, you know, I was externalizing it and becoming proactive and I found, ⁓ and I found some great meditations. So I’m lying there. I can’t walk. I’m very sleepy. I need to sleep most of the time because I’m exhausted from all of the rehab. I’ll put on a meditation and just let it do its thing in the background while I was healing, resting, you know, recuperating. ⁓ so I think that approach
just changes the way that your body responds as well because your body wants to step up to the plate. If you set an intention, we’re going through the healing process, this is the path that we’re gonna take, the body follows. If you go through the other part, if you take the different path and go, well, things are not going good for us, we’re doing it really tough, we’re feeling sorry for ourselves, we’re not gonna put any extra effort in.
the body’s going to go, no, I’m listening. I’ll do exactly what you want. And you get the results that, that your intention has set. Right. So I think that’s brilliant. The way that you went about that and not interacting with other people. kind of get that too, because it can bring you down. Like seeing other people doing it hard can bring you down. And also ⁓ sometimes other people’s attitudes can rub off as well. And they can bring you down if
They’re feeling bad about this situation and you don’t want to be around people who are going to ruin your vibe. Doesn’t matter who they are or where they are.
Jake (41:27)
Right. And one thing that where I think the hospitals and doctors and therapy where I think they really let us down is something that I believe it was on one of your podcasts and someone talking about neuroplasticity is that when we do something for therapy, we should be doing it thousands of times. We shouldn’t be doing it a few times.
I think where we’re let down is like, ⁓ for instance, I went for my physiotherapy today and I find it helpful and I definitely do go, I would recommend it to anybody. But we will do each of these exercises 10 times. Do this 10 times, do this 10 times, do this 10 times. But what we’re failing to see is that, you know,
To really make those connections, need to do things hundreds or thousands of times. ⁓ I have a, know, a, for instance, for you, you know, I mentioned the writing. So a place where I have an incredible block is, ⁓ I will go to try and begin something, particularly where I’m going to write something down and I’ll have the intention of writing one thing and something different will come. So,
I would try and begin a word with the letter T and instead of beginning by going up and then straight down and crossing my T, instead I’m doing a loop like it’s an L. So in order to, you know, retrain, sort of get that, get that connection made, to go and start doing words that begin with the letter T.
Bill (43:17)
I have
Jake (43:24)
and a lot of times, mean like thousands of times before I could sit down and write a letter T. if people are feeling like they’re not getting anywhere or it’s not coming along for them and they are doing the exercises, I would say don’t give up and do them more. Don’t give up and do them less, do them more.
Bill (43:33)
Wow.
Jake (43:53)
⁓ If you’re going to be doing something like walking, if you’re finding that difficult, then I think maybe if you walked around the block on Tuesday, go another 10 steps further and do that for the following week and always just keep adding to it because it does get better. And I don’t know about you, do you find Bill like
I know one of your recent guests mentioned that it was a challenge for him to deal with how non-linear the recovery is. And I think that only hearing that from other people allowed me to accept that. Because a lot of the time I’ll feel like I’m doing great and things are incredibly better. And then maybe I have a week where I’m doing in respects, I’m doing worse than I was when I was in hospital.
And I think that that’s really hard to deal with. you have that too, or did you find that? The non-linear kind of feeling? Yeah.
Bill (44:55)
Indeed, and then what happens four months, five months, six months, 10 months, is you start seeing the pattern and the pattern is, okay, I’ve made some inroads, okay, here’s the quiet time or the downtime coming and then you feel better about it because it’s not a big deal. You see the pattern and you notice it and it’s less frustrating because that’s actually, it appears as though you’re doing nothing to your head. Your head might be going, oh, I’m not doing anything.
Long-Term Recovery and Reflectionsitting on my butt, I’m not able to get through a day of physical exertion or anything like that. I must be going backwards. Well, in fact, your body’s just doing a different version of recovery and it looks different. It looks still and it looks silent and it looks fatigued, but it isn’t going backwards. It’s just a different phase and it needs all of it. You need to do that silent, still, quiet, fatigued resting one. And then you need to do the one which is
to whatever extent you can, full on, full out, doing too much, going too far, ⁓ over-exerting yourself. And they kind of, you can’t have one without the other. You have to have them both. And ⁓ if you understand that, then you don’t get anxious or upset about it or bothered about it. And you start playing the long game. You stop focusing on today, I didn’t have a lot of effort, but…
If I reflect on my last six months or nine months, there was maybe only seven days that I was really low or didn’t feel great. The rest were better days or I felt okay or whatever it was. if you start playing when you’re only four months out, it’s hard to play the long game. But when you get to a year or 12 months out, you look back and reflect, you can see that majority of what you were doing was getting.
outcomes that were favorable and therefore, you know, and therefore you can sort of be okay with the quiet days, rest, the rest of all those. I used to go to loud events, whether they were a concert, a family event, a party, wedding, whatever. If they were long drawn out days, I would have to plan for the next day to be completely a write off, nothing on the calendar.
No going anywhere, seeing anybody, doing anything so that I could rest properly and get my brain back online so that I could have a good day, the third day, you know? And that’s how we did it for many, many years. And I remember one time when the shift came, when I said to my wife, I am not doing anything tomorrow. You make sure that whatever you do, you do without me. You’re going to go and do your thing, but I’m not going to be involved.
And then waking up in the morning and going, hey, I feel fantastic. What are we doing today? And she’s like, I didn’t plan for you, but okay. ⁓ let’s get the ball rolling on something. So we did something minor, but it was more than nothing. And that was my, okay. My moment of things are shifting and I’m able to recover overnight with a good night’s sleep quicker than I was.
doing previously.
Jake (48:19)
That’s great. That’s great. Yeah. A lot of this, I really appreciate talking to you and I appreciate hearing your guests who have been at this a lot longer than I have. ⁓ I’m incredibly encouraged by how well I’ve done so far, but it’s also, there’s a lot of questions. ⁓ For instance, I’m in this stage where I don’t know, Bill, if I’m going to make it back to the same job
as I was doing before, don’t know whether it’s reasonable to think that. Right now I’m doing, you know, going through all the steps that I need to go through and doing all the evaluations that I need to do. ⁓ But I’m not sure what the outcome is going to be. And that’s a little bit hard because I’m, you know, like most people who are entrepreneurs or, you know, have large families, we like to have an element of control, you know, with things.
So it’s been hard to just sort of sit back here and not know what’s coming along. As far as work goes, I don’t know. Luckily, you know, I have a building here where I do own the building and I do have commercial space downstairs. So maybe I have the option to now use that space for myself. And ⁓ maybe I’ll have to be, maybe I’ll be forced to go back into.
entrepreneurship and open my own business. Maybe going back to work ⁓ is not the path for me. We’ll have to wait and see.
Bill (49:56)
It will emerge. You’ll get a sense of it. I had ⁓ three years where I worked for another organization and it was a completely different field and they were, the role was a very entry level administrative role. Very, we’re talking a role that would probably be replaced by AI now. ⁓ So we, I was doing that for three years and what was good about planning and trying to get back to that level of
effort and work was that it served a purpose. And part of the purpose was talking to people, traveling, ⁓ doing work on the computer. It was retraining me as I was getting comfortable with the role, getting used to traveling, getting back to being in loud environments, et cetera. So it was difficult, was tiresome, it was challenging, but it was…
kind of like its own therapy. And when it served its purpose after three years, I was done. I just said, okay, I’m out of here. going back to running my own business again. And I’ll be, I’ll do that as slowly or at my own pace in any other way that I can so that ⁓ I create the whole, all the rules around the amount of hours that I attend, the type of work that I take on.
You know, so if I was too tired to work the following week, I would just tell my clients I’m busy for a week and I can book you in two weeks down the road, you know. So that was what was good about going back to my business. And also what was good about going back to a job for somebody else because their expectations, you know, working for a corporation, the expectations are far lower than the ones that we put on ourselves when we’re working.
for ourselves. So I know some people think working for a corporation is really stressful and all that kind of stuff. And it probably is. No. But I mean, I was barely working six hours a day. Whereas working for myself six hours a day that the day’s just starting, you six hours. You haven’t even hit lunchtime yet. So it’s interesting to think about work and how ⁓
and how you can use it as a therapy.
Jake (52:23)
It is well, I mean the difference for me is that I was actually in that role that you’re explaining right now when I had the stroke so I I’d gone through a whole bunch of very difficult things in Hong Kong and upon coming back here to Canada, I was almost feeling like I I had a lot of stress going on and I had a lot of things that I needed to sort out and ⁓
there was a lot of things that we need to settle with the kids. There was all sorts of stuff that needed to be done. So the job that I was working was actually, it was already fulfilling that role that you explained. I was having that less responsibility. was going in for a specific amount of hours that they were letting me know. So that was exactly it. was an administration job, but
it was really not close to the amount of responsibility that I was used to having. ironically, now that this has happened to me, it might be the amount of control that I have over the amount of worked that might be an advantage after going to stroke. I’d be interested to see
or to hear more about ⁓ how people deal with the change that comes with the different type of work they might be forced into, forced out of, and how they deal with that. Because I think that a lot of people deal with, ⁓ they think of their employment or they deal with their life in this sort of way, like people often ask, especially in Asia.
What do you do? The first thing that people do if you’re in Hong Kong is they hand you a business card. They call it a name card there. And the very first thing that you do when you meet somebody before you even speak is you hand them the card and you each examine each other’s cards. So this idea of like, what I do is who I am. And I, and I think that when you have something like this happen to you often
what you do must change. when you’re identifying with what you do, you’re sort of declaring that as your title, who you are, I would imagine that’s pretty tough. Luckily, I wasn’t tied to Federal Express, thankfully.
Work and Identity Post-StrokeBill (55:00)
Yeah, I hear you. is, people will work as a lawyer for 20 years or 30 years, have a stroke, and then it’s like, well, who am I now? What am I now? And that’s the challenge with working and identifying as the work that you do. know, those days are gone in theory. You know, you don’t get named John lawyer anymore. You don’t get named John banker.
anymore, you you don’t get the your surname from the occupation that you do back in the day, you know, Baker, carpenter, plumber, you know, all those people, they were their entire job, they did it for 3040 5060 years, that was what they did. And then when they couldn’t work anymore, well, they still identified as john plumber, because they had the name, the name was
given to them or John Carpenter or whomever. The thing about it is now with jobs being so ⁓ not long term anymore, you get a job or you go to a particular employer and then two, three years you’re in another role or another title, et cetera, ⁓ or you’ve moved up the corporate ladder, et cetera. Well, if you’ve never even done that, if you’ve only ever worked and you haven’t explored your interests,
⁓ hiking, walking, running, playing ball, ⁓ becoming a poker player, ⁓ whatever, whatever it is other than my job, you’re very, it’s understandable that it’s very narrow how you can explain to somebody how you occupy your time. Like what do you do? Well, I do plumbing, but I also do poker.
⁓ I do this, but I also do that. I’m that guy. Like when you ask me, sometimes I will literally be in a painting outfit, not so often now, but my painting clothes, and then I’ll take them off and I’ll sit in front of the computer and I’ll record a podcast episode. And then at the end of the day, I’ll be doing a presentation somewhere, speaking publicly on a particular topic at the moment. My favorite topic is post-traumatic growth.
When somebody asks me, what do you do? If they know me, they know I do podcasting. They know I do painting. They know I do speaking. They know I’ve written a book. ⁓ they know all these things about me. If they don’t know me, depending on which room I’m in, I’m a podcaster. If I’m in one room, I’m an author. If I’m in another room, if I’m in another room, I’m a painter and so on. And what that allows me to do is.
not be tied down to my entire existence being about only one thing, because I think that would be boring as, and I would hate to be the guy that only knows something about painting, how to paint the wall fantastically. mean, great, maybe, but not really rewarding, and not a lot of ⁓ spiritual and existential growth in painting a wall. I solve a problem for you, but I haven’t gained anything.
other than money for me. It’s not really, you know, it’s not my cup of tea anymore. Now I get to have a podcast, I get to make way less money out of a podcast episode and yet reach hundreds and thousands of people and feel really amazing about that. And what that does is that fills up my cup. That allows me to fill up my cup on the down days where I’m not earning a living. And then it allows me to go earn a living.
and then not feel like all I’m doing is working and going through the maze all day every day and just being on the constant cycle of the boredom and the sameness and all that kind of stuff. So I sprinkle a little bit of this and that into my life so that I don’t have ⁓ the same day twice because I can’t cope with the same day three times. Twice is a real bad sign for me. If there’s a third day coming, that’s gonna be the same as yesterday.
I’m not up for that, I don’t want to know about it.
Jake (59:21)
Right. Well, that also helps with your recovery. I think like, as you say, you do a lot of different things and that helps a lot. Right. So, you know, one, for instance, is, know, the, of the first things I started to think of when I was in the hospital in Sudbury and thinking of getting home is my gosh, it’s going to start getting cold soon. Winter’s going to hit. And I really have to start getting that wood all stacked. Right. So
So, you know, here I am, I’m benefiting from it now. I burn wood all winter, but, ⁓ you know, I spent a lot of my rehab ⁓ stacking wood. And I mean, that’s incredibly great physiotherapy, right? Whether you’re stacking wood or like you said, you made me think when you’re talking about painting, I’m thinking about like the karate kid, right? Like with wax on wax on paint on, this is the kind of stuff that gets you out of one particular mold.
And with your brain sort of like focused on recovering in one single area, you can recover in all these different areas. And I think they contribute to like a big picture of your recovery.
Bill (1:00:34)
I agree with that. It’s exactly right. It’s you know standing on the ladder which I do less of these days because I Felt off about a year and a half ago. So standing on the ladder and Getting down the ladder holding a paint can and applying paint ⁓ Putting drop shades down and picking up tubs of paint, you know ⁓ That whole every part of that physical activity is
using a different part of the brain. Writing a book, even if it’s only 10 minutes a day, writing half a page or 10 paragraphs or whatever it is, that uses a different part of the brain. ⁓ Public speaking, that trains and uses a different part of the brain. Everything that I do definitely kind of helps to rewire the brain in many, different ways and supports my ongoing recovery and… ⁓
is and the idea behind it amongst other things, the idea behind it from a neurological kind of perspective is that it activates more of the brain. The more of the brain that’s activated, the more chance you are of creating new neuronal pathways and having ⁓ more options for healing or recovery. And then it works emotionally for me, it works mentally for me. Do you know, so I get…
the emotional fitness and the mental fitness out of it. Speaking on the podcast, meeting people gives back. you know, that serves my, I need to serve other people purpose. Do you know, like, it’s just so much, everyone ⁓ who knows me kind of knows that I wear a lot of hats. I kind of.
I kind of like, I do it. I show people like when they’re saying, what are you up to today? I’ve been wearing a lot of hats today. And if I’m not wearing a hat, like I pretend that I put another one off or just took one off when I’m sitting with them or talking with them. It’s crazy how many things I do. And about the only hat I would prefer not to wear right now is I prefer to put the painting hat down.
and just hand that over to somebody else and just go, I think that part of my life’s done and I’ll move on to other things.
Jake (1:02:57)
If you don’t mind, have one, there’s one more thing that right now that I’d like to mention just before I forget. Is that all right? All right. All right. So the only other thing, the thing that I’ve been dealing with myself and I don’t know how many people deal with it or don’t deal with it. I know that not everybody does. don’t, I deal with a lot of post, uh, post stroke pain. So while I don’t have
Bill (1:03:04)
Yeah, of course.
Jake (1:03:25)
⁓ the misfortune of losing use of my feet or losing use of my hand. I mean, it’s limited. do therapy, but I’m able to use my hands. I’m able to write and all this. But coming along with that is an incredible amount of ⁓ burning, tingling ⁓ sort of ⁓ feelings like there is ⁓
almost like the, know, if you can think of newspapers when they’re delivered in a bundle and they’ve got this kind of plastic strapping around it. ⁓ It’s usually it’s yellow, you know, this sort of plastic strapping. I feel often like that is wrapped around my arms, like it’s wrapped around my leg. I deal with a lot of this kind of stuff, unfortunately. So again, I mean, I’m not going to sit here
and whine about it because again, ⁓ I can walk, I can do all the things that I need to do and I’d rather have that than what I do. But I’m wondering if it’s really common for a lot of people to have this, you know, post stroke pain.
Bill (1:04:44)
If
10 was the worst pain you’ve ever experienced in your life, that’s like we’re talking about 10 is somebody’s cut your limb off ⁓ and one is no pain at all. Like where would the pain be for you?
Jake (1:05:00)
Well, thankfully, again, thankfully ⁓ I’ve had some progress in this. So when I first came to, when I was first starting to get all the feeling back, ⁓ I started to notice that some feeling wasn’t coming back. But while I was in the hospital, I was on quite a lot of medication. So I was on some pretty heavy painkillers. ⁓
I think hydro-morphone, things like this. And I came off of those when I was coming home and a lot of the feelings started coming back. I would say that some days and at some times that pain can be what I would say maybe it’s a 12 out of 10. Like it’s bad. at some points I’ve been left
doing nothing but be able to just really just sit there and cry. I’m going to be honest with you. And the pain could be quite severe. Now luckily those days are few and far between. It’s not all the time. ⁓ And here’s the deal. The thing that’s very strange with the post stroke pain or the intensity of it is that it’s like
going to sleep or it’s like the start of a new day, the beginning of a new day is like a reset button’s been hit. So for instance, I could wake up on a Monday and I could be hit with the worst pain that I’ve ever had in my life. It feels literally like I’m being hit with a taser gun on the right side of my body and that while somebody’s hitting it with the taser gun, they’ve lit my hand on fire. And, ⁓
And then the very next day after I’ve gone to sleep, I woke up and I’ve had the rest. I wake up almost scared to move because for me, sort of when I wake up and I haven’t moved yet, it’s almost like nothing’s happened to me. It’s like I wake up and I don’t know that I’m numb. don’t know that I’m in pain. don’t know that all this is going on. And then I start to move and sometimes I can sit there and feel a relief. Think, wow.
There’s nothing severe going on. This is pretty good and it’s going to be a great day. Or sometimes I can be struck with a type of debilitating pain that I can’t even describe. Yeah.
Pain Management and Coping StrategiesBill (1:07:34)
Well, what you’re describing is very common. I know a lot of people going through post stroke pain. ⁓ It is a thing. I have a very minor version of exactly the thing that you described about how the tightness and things wrapped around ⁓ your hand, like the newspaper.
that’s kind of what I feel on my left side, the whole left side all the time and the burning and tingling sensation all the time. And okay, on my worst days, these days, like it’s probably, you know, I know, it’s probably a four and a terrible one would be a five, but it doesn’t get there much. And what I’ve noticed is that the, either I’ve become more tolerant of it or my
my pain has decreased in my awareness. Like I’m aware of the fact that my limb is in the state that it’s in. And sometimes I’ll go to get a massage to get the muscles loosened up because they kind of cramp up and they don’t release. And my muscle will go well. You’re really tight today. Everything is real tight. know, have you been in pain? And I’m like,
No, I haven’t been noticing the pain, ⁓ I thought it was time for a massage, but I didn’t realize how tight everything was and how everything was working. So when I have a morning, when I have a, in the beginning, I beg your pardon, I used to wake up Monday morning was the best day. And then by Friday evening, if I’d done five days worth of work, Friday evening was the worst day.
because my resilience for recovery had decreased, waned over those last two days of the week. And then I needed Saturday and Sunday to get back to it. So post stroke pain is very, very common. A lot of people are experiencing it. ⁓ I would encourage people who are listening here on this episode, if you’ve got all the way through it, ⁓ just leave some comments in YouTube. Just let us know.
If you’re someone who’s experienced any of the things that Jake has inquired about, maybe we can start a conversation, give some more insights to Jake. And then you’ll find that ⁓ there’ll be specific kind of post stroke pain communities, I would say on places like Facebook or somewhere there. There might even be clinics specifically in Ottawa or in the areas that deal with
⁓ neurological kind of pain. There are clinics that deal with that. I don’t know if anyone has found other ways to get around it other than pain medication and to what extent, but I know that I feel my deficits more when I eat really badly. So maybe something that you might pay attention to is if you have a particular food, if you diarize what you eat and then
notice how you feel the next day or a day later or half an hour later or half a day later, that might give you bit of an insight. I used to notice some of my deficits get worse after high carb meals. And then that would enable me to go, okay, I’m gonna try that again, see if it happens again, and then avoid that particular type of meal or that percentage of carbs on my plate as opposed to protein or vegetables. So just one of those.
little things that might help, but it’s not going to turn a 12 out of 10 into a five out of 10. Do you know it’s, there’s just little strategies that just kind of support, ⁓ your, the way you experience your body all the time and not all the time, like the way that you influence how you experience your body, it supports that.
because I used to find that I used to make my deficits worse by doing the wrong things. And my whole aim in my life was if I’m doing that and that’s making my deficits worse, then I don’t want to be the guy that’s making my deficits worse. Alcohol is a classic example of one of those things. I drink, I feel like I’m having another stroke. It’s like, forget that, I’m not going down that path. And people who have had a stroke less than 12 months.
ago should not be drinking at all. In fact, if you’ve had a stroke, my recommendation is to never drink alcohol ever again. I didn’t drink for the first five years after my stroke. And then I’ve had maybe three or four beers a year since then ⁓ at the most, you know, so.
Jake (1:12:32)
thought of it terrifies me, be honest, just anything like that terrifies me. Like, don’t like the thought of it. Like, had I been a smoker, I probably would have quit. don’t like the thought of like, I feel like even like if I even if I drank that one beer, and then I did have a stroke, then I won’t know whether that’s what did it or not. You know what I mean? Like, I don’t want to be the person who precipitates the next event.
Bill (1:13:00)
Imagine having high blood pressure without smoking and then smoking and making it even worse. It’s pretty terrible. I used to smoke and I stopped as well after the first brain hemorrhage.
You know, what a waste of time and effort putting money into cigarettes and filling my lungs with chemicals that shouldn’t be there. It’s just crazy that I was doing that, but nonetheless, same with alcohol. It’s just part of the culture. So we do what the culture suggested we did. We did it. And then I never really enjoyed it or I never really got anything out of it other than being.
inebriated and then again, it was like what for it’s not serving a benefit. There is no benefit. Now I people smoke and drink to ⁓ intervene in their emotional state, you know, to, dull some emotional pain and all that kind of stuff. All right. Short term, maybe that’s a good strategy for maybe one week or two weeks. But then after that, there is no strategy that I think.
is worth putting that much time and effort into and money into substances to quell your emotions. You might as well put that time, money and effort into the psychological, emotional rehabilitation so that you become free of those emotions and experiences. And then that way, you know, gain wisdom rather than…
avoided pain and that’s the way I see it. So I know that alcohol serves a lot of purposes, but maybe this is some just food for thought, give people a different way of contemplating how they’ve gone about their life before, you know.
Jake (1:14:56)
Yep. Yeah. Well, I would say that, you know, as far as things go, like smoking, like smoking, did when I was quite, quite a bit younger, I did quit, you know, when my first daughter was born. So I did have that as a, probably as an ongoing risk factor, you know, that, that, that may have been lingering behind. Other than that, ⁓ yeah, I don’t see the, the, I don’t see the purpose. I, I’ve watched some of the guys who were in hospital,
four stroke, that’s part of the reason why I chose not to hang around with the other folks who were there at the lounge and in the hospital, is they were there in hospital four stroke and they were already outside smoking. And ⁓ it blew, to be honest, it blew my mind. it was amazing to me. They were smoking, they were having a whole lot of fast food.
Bill (1:15:38)
Yeah.
Jake (1:15:51)
brought into the hospital by their buddies and they were doing all these things and I couldn’t fathom it. I guess maybe it’s, I think there’s just two different kinds of people, right? And I think that the ones who want to get better, they always end up watching your podcast.
Community and Shared ExperiencesBill (1:16:10)
at some stage, I so. I hope so, you know. I don’t profess to know anything or, you know, but I can say that the people that I speak to do know a lot and together, ⁓ even if you just get one little gold nugget out of an episode, that’s job done, you know. We’ve done the job, just different way of thinking, experiencing, knowing that you’re not alone. You know, your questions are really cool.
in that what you’re trying to do is work out whether there’s other people in your situation. Now that will maybe do a couple of things that might make you feel better that you’re not alone, but it also might make you feel like, if I’ve been here, if I’m here and they’ve been there, maybe somebody is working on this situation, know, this issue, because there’s a lot of people there, right? So then that helps you find resources. ⁓ People might have hacks on how to improve or…
I’ve become something that you can catch up on really quickly, know, four months into your recovery instead of wait 10 years to find it out. That’s the whole purpose of this. It’s like, how do we decrease the time that it takes for people to come across that next gold nugget, you know, that’s going to take them in the right direction. ⁓ I really appreciate you reaching out and joining me on the podcast, Jake. think, ⁓ it’s been a great conversation. I look forward to actually hearing about you.
say a year from now, just to see how far things have come, because I feel like you’re gonna have made massive strides. And even though you might be still dealing with some challenges related to the deficits, I think you’ll have a lot of solutions and it’ll be worth hearing about.
Jake (1:17:52)
Thank very much, Bill. It’s been really great talking to you and I’ve really, really benefited from your podcast. Like I’m sure a lot of other people have, but I just really felt like ⁓ I wanted to at least give back to some people who might be coming across this in an early stages stroke like I was. ⁓ hopefully some people can benefit from our conversation. Bill, thank you so much.
Bill (1:18:19)
Thank you, mate.
Bill Gasiamis (1:18:20)
Thanks so much for listening to this episode of the Recovery After Stroke podcast. And thank you to Jake for sharing a story that really takes courage to tell, especially so early in recovery.
One thing I hope you’ll take from this conversation is that stroke effects aren’t always obvious
and they don’t always follow a neat, predictable path. Recovery isn’t just physical, it’s emotional, it’s frustrating, it’s confusing, and sometimes it’s painful in ways no one prepared you for.
Jake’s story reminds us that healing doesn’t mean returning to who you were. It means learning how to live with what’s changed while we’re still moving
this episode helped you feel understood or gave you language for something you’ve been struggling to explain, remember that you can support this work
at patreon.com/recoveryafterstroke. Every contribution helps keep these conversations online and moves us closer to my goal of recording a thousand episodes. So no stroke survivor ever feels like they’re doing this alone. And if you haven’t already, you can order my book, The Unexpected Way That a Stroke Became the Best Thing That Happened.
by going to recoveryafterstroke.com/book.
Many people expect it to be just my personal story, but it’s actually a practical companion for stroke survivors and caregivers filled with insights I wished I’d had
when I was lost trying to rebuild my life. Thank you for being here. Thank you for listening. And remember, you’re not alone in this.
See you on the next episode.
The post Stroke Effects: The Hidden Deficits Jake Faced After a Hemorrhagic Stroke appeared first on Recovery After Stroke.
Craniotomy Stroke Recovery: How a Massive Medical Event Reshaped One Man’s Identity and Way of LivingWhen Brandon Barre woke up after his stroke, half of his skull was missing.
Doctors had performed an emergency craniotomy to save his life after a severe brain bleed. His left side barely worked. His memory felt fragmented. Time itself seemed unreliable; days, weeks, even months blurred together into what he later described as a kind of perpetual Groundhog Day.
And yet, amid one of the most extreme medical experiences a person can survive, Brandon remained unexpectedly calm.
This is a story about craniotomy stroke recovery, but it’s not just about surgery, rehab, or timelines. It’s about identity, mindset, and what happens when your old life disappears overnight, and you’re forced to rebuild from the inside out.
Life Before the Stroke: Movement, Freedom, and IdentityBefore his stroke, Brandon lived a life defined by movement and autonomy. He worked in the oil fields as an MWD specialist, spending weeks at a time on drilling rigs. Later, he left what he called “traditional life” behind and spent years traveling the United States in an RV.
He found work wherever he went, producing music festivals, building large-scale art installations, and immersing himself in creative communities. Stability, for Brandon, never meant stillness. It meant freedom.
Stroke wasn’t on his radar. At 46, he was active, independent, and deeply connected to his sense of self.
The Stroke and Emergency CraniotomyThe stroke happened in Northern California after a long day of rock climbing with friends. Brandon didn’t notice the warning signs himself; it was others who saw that his arm wasn’t working properly. Later that night, he became profoundly disoriented.
He was found the next morning, still sitting upright in his truck, barely conscious.
Within hours, Brandon was airlifted to UC Davis Medical Center, where doctors removed a blood clot and performed a large craniotomy due to dangerous swelling. Part of his skull was removed and stored while his brain recovered.
He spent 10 days in intensive care, followed by weeks in inpatient rehabilitation.
Remarkably, he reports no physical pain throughout the entire process, a detail that underscores how differently each brain injury unfolds.
Early Craniotomy Stroke Recovery: Regaining Movement, Losing CertaintyPhysically, Brandon’s recovery followed a familiar but still daunting path. Initially, he couldn’t walk. His left arm hung uselessly by his side. Foot drop made even short distances difficult.
But what challenged him most wasn’t just movement; it was orientation.
He struggled to track days, months, and time itself. Short-term memory lapses made planning almost impossible. Writing, once a core part of his identity, became inaccessible. He could form letters, but not their meaning.
This is a common but under-discussed aspect of craniotomy stroke recovery: the loss isn’t only physical. It’s cognitive, emotional, and deeply personal.
“It’s kind of like I’m in this perpetual day ever since the stroke… like Groundhog Day.”
Technology as Independence, Not ConvenienceOne of the quiet heroes of Brandon’s recovery has been voice-to-text technology.
Because writing and spelling no longer function reliably, Brandon relies on dictation to communicate. Tools like Whisper Flow and built-in phone dictation restored his ability to express ideas, stay connected, and remain independent.
This matters.
For stroke survivors, technology isn’t about productivity. It’s about dignity.
Identity Reset: Slower, Calmer, More IntentionalPerhaps the most striking part of Brandon’s story is how little resentment he carries.
He doesn’t deny frustration. He doesn’t pretend recovery is easy. But he refuses to live in constant rumination.
Instead, he adopted a simple principle: one problem at a time.
That mindset reshaped his lifestyle. He stopped drinking, smoking, and using marijuana. He slowed his pace. He became more deliberate with relationships, finances, and health decisions. He grew closer to his adult daughter than ever before.
The stroke didn’t erase his identity, it refined it.
Taking Ownership of Craniotomy Stroke RecoveryA turning point came when Brandon realized he couldn’t rely solely on the medical system.
Insurance changes, rotating doctors, and long waits forced him to educate himself. He turned to what he jokingly calls “YouTube University,” learning from other survivors and clinicians online.
That self-directed approach extended to major medical decisions, including choosing monitoring over immediate invasive heart procedures and calmly approaching a newly discovered brain aneurysm with information rather than fear.
His conclusion is clear:
Recovery belongs to the survivor.
Doctors guide. Therapists assist. But ownership sits with the person doing the living.
A Message for Others on the JourneyToward the end of the conversation, Brandon offered advice that cuts through fear-based recovery narratives:
Don’t let timelines define you.
Don’t rush because someone says you should.
Don’t stop because someone says you’re “done.”
Every stroke is different. Every brain heals differently.
And recovery, especially after a craniotomy, continues far longer than most people are told.
Moving Forward, One Intentional Step at a TimeCraniotomy stroke recovery isn’t just about regaining movement. It’s about rebuilding trust with your body, reshaping identity, and learning how to live with uncertainty without letting it dominate your life.
Brandon’s story reminds us that even after the most extreme medical events, calm is possible. Growth is possible. And a meaningful life, though different, can still unfold.
Continue Your Recovery Journey* ???? Learn more: https://recoveryafterstroke.com/book * ???? Support the podcast: https://patreon.com/recoveryafterstroke
Disclaimer:
This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
Brandon’s Story: Surviving a Craniotomy, Redefining Identity, and Recovering on His Own TermsHe survived a stroke and craniotomy, then calmly rebuilt his identity, habits, and life one deliberate step at a time.
???? Research shortcut I use (Turnto.ai)
I used Turnto.ai to find relevant papers and sources in minutes instead of hours.
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You’ll get 10% off, it’s about $2/week, and it supports the podcast.
Highlights:
00:00 Introduction and Background
01:52 Life Before the Stroke
03:32 The Stroke Experience
11:03 Craniotomy Stroke Recovery Journey
17:09 Adjusting to Life Post-Stroke
28:46 Living Independently After Stroke
35:09 Facing New Challenges: Aneurysms and Uncertainty
42:13 Support Systems: Finding Community After Stroke
47:06 Identity Shift: Life Changes Post-Stroke
58:39 Lessons Learned: Insights from the Journey
Transcript:
Introduction and BackgroundBrandon (00:00)
next morning
was still in the driver’s seat with my head on the steering wheel.
and I couldn’t make either of my arms work
I had been bleeding into my brain for 12 hours overnight they had to go ahead and do a,
craniotomy. And so they took this whole side. It was a big craniotomy.
They took that whole section of my skull out, put it in the freezer
Bill Gasiamis (00:27)
Before we begin today’s episode, want to take a moment to speak to you directly. If you’ve had a stroke, you already know this part. The hospital phase ends, but the questions don’t. You’re sent home expecting to get on with it. And suddenly you’re left trying to work out recovery, mindset, fatigue, emotions, sleep and motivation all on your own. You shouldn’t have to. That’s why I wrote my book, The Unexpected Way That a Stroke Became the Best Thing That Happened.
Not to tell you what to do, but to walk beside you and show you the tools real stroke survivors use to rebuild their lives when the system stopped helping.
and now with this book, you won’t have to figure it out alone.
You can find that at recoveryafterstroke.com/book. All right, let’s get into today’s episode. Today, you’re going to hear from
Brandon Barre. Brandon was 46 years old, active, independent and living an unconventional life when he had a stroke that led to a craniotomy.
where part of his skull was removed to save his life. What stood out to me immediately about Brandon wasn’t just the severity of what he went through. It was the calm grounded way he approached recovery, identity and rebuilding his life. This is a conversation about stroke recovery. Yes, but it is also about mindset, ownership and what happens when you decide to take recovery into your own hands.
Life Before the Stroke(01:52)
Brendan Barre, welcome to the podcast.
Brandon (01:54)
Thank you, man.
(01:56)
You struggled a little bit getting here. There’s a couple of little things that caused a bit of a challenge for you. What are those things?
Brandon (02:05)
Well, I mean, first of all, I’m, I’m, I’m, even before my stroke, I was never very computer-y. Um, so using my phone for more than just making phone calls is kind of new to me. Um, so yeah, a new microphone, that was fun. And then I had made a bunch of notes, not realizing that I probably wasn’t gonna be able to see those notes. Um, you know, so that was also a little bit of a issue, but uh, but yeah, other than that, man.
Not much, you know, I mean I’m here.
(02:37)
Yeah. I remember receiving your emails about, I’m not sure what day we’re on. I need to reschedule all that kind of stuff. Stuff that I used to do heaps. I remember in the early days of my kind of stroke recovery, I used to make appointments, put them in my calendar, get reminders about my appointments and still be confused about the day, the time and the location of the appointment.
Brandon (03:04)
Yes, absolutely. That’s a big thing for me too. know, and I mean even just, you know, remembering from minute to minute where of what day, what month and everything I’m in right now is a little bit tricky still. It’s getting better, but ⁓ but yeah, I still have a lot of trouble. I can always think of every month except for the month that we’re currently in.
(03:24)
Okay, so you have like a short term memory thing, is it? Or…
The Stroke ExperienceBrandon (03:28)
Yes, yes, have short-term memory issues. ⁓ A lot of times ⁓ I struggle to find, like I said, the date and everything else. ⁓ But I don’t know, man. It’s kind of like I’m in this perpetual day ever since the stroke, and I have trouble keeping track of exactly what that is on everybody else’s time frame.
(03:53)
Like a, like a groundhog day.
Brandon (03:55)
Yes. Yeah. You know, I mean, if I really work hard and think about it, I can figure out what day it is, but it takes a while generally to get the month.
The day of the month isn’t quite as difficult anymore, but at the beginning I had trouble with the whole thing.
(04:11)
I hear you man, I totally hear you. I reckon there’s been a ton of people that relate to what you’re saying. ⁓ Tell me, day like before stroke? What’d you get up to? What type of things did you involve yourself with?
Brandon (04:23)
Well, ⁓ you know, I was, I was really involved in, ⁓ production of music festivals and, ⁓ doing that kind of work. ⁓ I’ve always kind of freelanced. Well, you know, I actually, ⁓ left traditional life in 2000 and ⁓ January 1st of 2012 and started traveling and, you know, living out of an RV and whatnot. Before that, I was in the oil field.
I’ve worked as an MWD specialist on a drilling rig, which means that I used to ⁓ take down all the information about where the actual drill bit was underground and send that off to all the geologists and everybody else so they can make sure that the well was going in the right direction. And, ⁓ you know, I just really didn’t feel happy in life, man. So I decided to take off and see the states out of my RV. And that started about 10 years of travel. And then
In 2019 I bought some property and started to kind of slowly come off the road and started to be on my property more often but you know it just yeah I don’t know man my life has been a lot of different transitions one thing to another I move around a lot in life.
(05:25)
you
Yeah, so the RV was kind of just exploring seeing the country Doing that type of thing or was it going somewhere with a purpose say to get work or to? Hang out there for a little while. What was that all about?
Brandon (05:57)
A little bit of all of it. A little bit of all of it. I’ve always been able to find work where I go, you know, doing different things. But I kind of fell into music festival work, like setting up and tearing down for music festivals and building art installations, doing like mandalas out of trash and stuff like that. And just kind of always did kind of the artist thing, I guess you could say.
Even before, while I was still in the oil field doing the traditional life thing, I was always very art motivated.
(06:30)
Yeah, when you talk about traditional life, you’re talking about nine to five kind of routine and working for the man type of thing. Is that what you mean by traditional life?
Brandon (06:43)
Yes, except mine was a little bit different. My work in the oil field involved me being on site on the drilling rig for up to six weeks sometimes. So it wasn’t really nine to five. I would stay gone for a lot more than that. But then when I would go home, I’d be off for three weeks, a month. So yeah, just ⁓ doing that.
(07:07)
Where were these oil rigs? Were they in the middle of a desert? Were they in the ocean?
Brandon (07:13)
No, they were all onshore and I worked a lot in like Pennsylvania, but also a lot in Texas ⁓ Just you know anywhere where they were doing natural gas drilling
(07:27)
And is that a remote kind of existence in that if you’re on the rig for six weeks, are you getting off it? Are you going into town? Are you doing any of that stuff?
Brandon (07:38)
Usually the rigs are within an hour of some type of small town usually a Walmart that type of thing So I would go and get groceries a couple of times a week You know me and the other guys would go out and get you know dinner times and whatnot but ⁓ but yeah, basically just sitting in a little trailer a directional trailer is what they called it because it was me and ⁓ Two two other three other guys two more ⁓
directional drillers and then one other MWD hand which is what I was and so there was a night shift and a day shift of two guys each.
(08:16)
12 hour shifts.
Brandon (08:17)
Yes.
(08:18)
Dude, hard work.
Brandon (08:21)
Yeah, I mean on paper it was hard work. In real life, I mean there were those really problematic jobs where you know everything went wrong but in most cases it was just you know taking a bunch of measurements on the computer whenever they would add another link of pipe to the drilling string and drill down further so every time they would add another length of pipe I would have to take more measurements.
(08:47)
I hear you. So not physical, but still mental. And you’ve to be on the go for a long amount of time.
Brandon (08:56)
Right, but yeah, I mean it did when I would have to go up on the rig floor to like change the tool out or to put something You know together or what not so there was a little bit of that but still not as physical as like a traditional drilling rig roughneck
(09:04)
Uh-huh.
I hear you. Yeah. Everyone’s seen those videos on YouTube with those guys getting covered in that sludge and working at breakneck speeds so that they can make sure that they put the next piece on.
Brandon (09:24)
Yeah, yeah, no, I, you know, and I mean, I wore my share of that mud, but not near as much as a floor hand would.
(09:34)
I hear, I feel like you’re, ⁓ you’re toning it down and you’re making it sound a lot more ⁓ pleasant than what it might be. But I appreciate that, man. like the way you talk about things. I couldn’t imagine myself doing that, that level of physical labor. Maybe I’m just a bit too soft myself.
Brandon (09:54)
Yeah, no, I don’t know, man. I consider myself soft in a lot of ways, too, man. You know, it’s just, we’re all different in our softness.
(10:02)
yeah. ⁓ tell me a little bit about, ⁓ your stroke, man. Like what was that particular week? Like the day? Like how did the lead up happen?
Bill Gasiamis (10:12)
Let’s pause for a moment. If you’re listening to this and thinking, I wish someone had explained this part to me earlier. You’re not alone. One of the hardest parts of stroke recovery isn’t the hospital. It’s what comes after when the appointments slow down, the support fades and you’re left trying to make sense of what your life looks like now. That’s exactly why I wrote the unexpected way that a stroke became the best thing that happened. It’s not a medical book. It’s a recovery companion built from real experiences.
real mistakes and real breakthroughs that stroke survivors discovered along the way. If you want something that helps you think differently about recovery and reminds you that you’re not broken, you can find the book at recoveryafterstroke.com/book. Let’s get back to the conversation with Brandon.
Craniotomy Stroke Recovery JourneyBrandon (10:59)
Okay, so I was helping a friend in Northern California to clean a property that was owned by an artist who had died and we went on to his 10 acre property and we’re just cleaning up for his family. But he had like all kinds of art stuff everywhere and so it was kind of right up my alley and ⁓
We were just trying to get the property clean for these people and we decided to take off and go and do a little bit of rock climbing. so we took off early one morning and drove to a town called Willets, California where there’s good rock climbing and we spent the day doing rock climbing which was a fairly new thing to me but the guys that I was with were very experienced lifelong climbers.
And so I was kind of the new guy and they were showing me the ropes and we climbed all day. I did really well, I thought, and didn’t really notice anything. No problems. ⁓ Got back in the car. We’re headed back to the house about an hour away, a friend’s house where we were all going to stay the night. And on the way there, I
noticed that I was really thirsty and I stopped and I got two 40 ounce bottles of Gatorade and I drank them both immediately and like just downed them and still didn’t notice anything was a problem was in the truck by myself with my two dogs and eventually I guess about an hour later we got to the house
And I went inside to hang out with everybody. And one of my friends said that my arm wasn’t working well. I didn’t notice it at all, but he said that my arm wasn’t working very well. ⁓ so ⁓ I just kind of went on with my life. a couple of, I guess about an hour later, I decided that I was really tired.
and I could not quench my thirst so I just grabbed a whole bunch of water and went out to my truck and I was gonna go and lay down and sleep in the back of my truck for the night and ⁓ when I got out to my truck ⁓ by this time my friend had said that my arm was working fine again and he noticed that I he felt like I had gotten over whatever it was and so I went out to my truck got into the driver’s seat of the truck
And that’s about the last of my recollection that night.
next morning when I wasn’t up making breakfast before everyone else, they realized there was a problem because I was usually the first one up making breakfast and doing all that stuff and I wasn’t there. So my friend came out to my truck to check on me and I was still in the driver’s seat with my head on the steering wheel. I never even fell over.
(14:05)
Hmm.
Brandon (14:17)
And so this is 12 hours later. And so ⁓ he tried to wake me up and I was only halfway coherent and I couldn’t make either of my arms work and only one of my legs could I get any response from. So he realized there was a problem immediately, pushed me over into the passenger side of the truck
got in and drove me an hour to the closest hospital, just a small little regional hospital. And they were pretty quick about realizing that I was having a stroke. And they didn’t even, I don’t even remember them putting me in a room. They brought me straight up to the roof and put me in a helicopter and helicopter and helicoptered me to UC Davis hospital in Sacramento.
(14:59)
Wow Wow
Brandon (15:15)
And I got into the hospital and within, I think about an hour and a half, they had called my mom and my brothers who were all in Louisiana at the time. And they had gotten permission to start treatment and they brought me into the surgery. at first they just
(15:25)
The The following is a video of the first year of
Brandon (15:45)
removed
a three millimeter blood clot from my main artery on the right side. But then the swelling was so bad because I had been bleeding into my brain for 12 hours overnight that they had to go ahead and do ⁓ a, what do you call it? The craniotomy. Yeah, craniotomy. And so they took this whole side. It was a big craniotomy.
(16:05)
Craniotomy
Brandon (16:12)
They took this whole side, everything to the center of my forehead, above my eye, down to just above my ear, front to back. ⁓ They took that whole section of my skull out, put it in the freezer so that my brain had room. then I spent 10 days in intensive care recovering from that. And then they moved me to a rehab hospital where I spent four weeks.
And yeah, so in that rehab hospital, yeah, immediately after the surgery, I couldn’t walk and I had pretty much no function on my left side, know, arm or leg. But by the time I got to the rehab hospital, I had gotten some control back, but I still couldn’t walk. ⁓
(16:44)
Wow, man.
Adjusting to Life Post-StrokeBrandon (17:10)
And that about a week after I was in the rehab hospital is when I started to walk again without assistance. So that came back fairly quickly, but I still had really bad foot drop and my left arm wasn’t working. It was hanging, you know? And then, so they kept me in there, ⁓ you know, going through, I guess, regular rehab.
(17:24)
Thank
Yep.
Brandon (17:36)
They the series of lights on the ground in front of me and I’d have to like run around and touch the different lights as they would activate and you know, I don’t know I mean, I guess it’s the same type of rehab stuff that most people go through and ⁓
(17:51)
Yeah, it’s probably
similar. Mate, ⁓ this is what I really want to know is what’s it like to experience having half of your skull removed? Can you somehow paint a picture of what it’s like to go through that process and how aware were you of it? Because you just had a stroke, right? So you’re in a bit of a challenged sort of healthy health state.
Brandon (18:14)
Right.
No.
Yes.
⁓ well, I think that that deliriousness was actually kind of helpful. First of all, I have not experienced any pain through the entire process. From the stroke, no pain from the craniotomy, no pain through rehab. I have not experienced any pain through this entire experience.
None whatsoever. Now the doctors say that I might have lost some of that ability to sense it But you know, I mean whatever it took I Really, you know, I didn’t you know, whatever the reason was The effect of it was that I had a pretty fame pain free experience, you know
(19:07)
and you’re like looking in the mirror and seeing yourself and you know, like experiencing your head and how do you kind of deal with all of that?
Brandon (19:21)
Well, ⁓ I couldn’t feel a whole lot. I still have a lot of, or not so very much sensation on my scalp on that side. So, you know, but as far as looking in the mirror, that was kind of interesting. You know, it took a little while to get used to it, you know, and, it, ⁓ was definitely not something that I would recommend.
Anybody else going through if they don’t have to you know, but ⁓ But I don’t know man. I mean, I’ve always tried to stay pretty positive about things and so, you know, I just Kept going, you know, I mean they shaved my head. I had dreadlocks for a very long time I had dreadlocks and And so this is all the hair that I’ve gotten since they put my skull back together, which was January or it’s actually
It’ll be one year tomorrow since they put my skull back together. So, ⁓ my hair is coming back, which I’m really grateful for. About this time next year, I’m gonna start trying to put my dreadlocks back in. you know, but yeah, it’s, I don’t know, man. It’s really been an interesting ride. ⁓ You know, ⁓ learned a lot more about stroke than I ever thought I would need to.
You know, I mean, I’m 48 right now. I was 46 when the stroke happened. So it wasn’t even on my radar, man. I wasn’t paying any attention at all. I didn’t know the anagrams or whatever. I didn’t know the symptoms of stroke. So I just kind of rolled with the punches as they came. I took it one step at a time. And that’s kind of the way it’s been with my recovery too.
is I try to address one problem at a time so I don’t overwhelm myself. So after I started to get my leg back, I started to shift my influence to my shoulder and my arm. And at this point, I’ve got almost full range of motion back to the left side. I still can’t write. ⁓ Well, actually, technically, I can make my whole alphabet and all of my numbers with
(21:16)
Yep.
Brandon (21:37)
both hands at this point. trained myself to use the other hand and then about the time I was able to get that back the other hand started to come back online. So now I can do all that with both hands but words I’m word blind and numbers and letters don’t make a lot of sense to me. So even though I can make the shapes I have a lot of trouble associating the sounds of certain letters and the functions.
of different numbers and letters, you know? That’s where a lot of my trouble is now, and that’s where most of my work is at the moment.
(22:14)
I hear you. So you sound like you’re very cool, and collected. How do you remain positive when you wake up from a stroke? You’re missing half of your skull. Your body doesn’t work on half the side. Is it your default? Do you have to work on that? Have you been working on being positive over?
the decades that you’ve been on the planet, give us a bit of an insight into that part of you.
Brandon (22:47)
Okay, so yeah, I think I’ve always maintained a pretty positive demeanor, you know, I mean I’ve gone through some rough stuff in life, but I’ve just kind of kept going, you know, rolling with the punches. So I really don’t think that I have had much difficulty remaining positive through it. You know, there’s ⁓ definitely, you know, ⁓ days that I don’t feel as good as other days, you know, and you know, I definitely have… ⁓
things that I have to work through. have to, you know, I have to make an effort to remain positive, you know, at times. But my default has always been to be a pretty positive and happy person. So I think that that was really the majority of it is that I’ve always even in the light of extreme adversity, I’ve always been able to remain positive. You know, ⁓ so that that’s always been, you know, key even before the stroke. But
(23:39)
Yeah.
Brandon (23:46)
Yeah, I mean definitely waking up and realizing that half of my body didn’t work anymore was not fun, but it’s what I was given. I couldn’t change it, you know, only time and work was gonna change it. So I just kinda accepted it, you know, I mean, ⁓ one of the biggest things that helped me out was by the time I got out of surgery and started to get coherent,
My mom and my brother had already flown from Louisiana to be with me in California at the hospital. And that was huge just to know that my family was there. And they stayed with me for the whole time that I was ⁓ in the hospital for the 10 days. And then when I went to the rehab hospital, they went home. ⁓ But yeah, so that was ⁓ just really, that was a big part of it too, you know, I mean.
My mom and my brothers are pretty much the most important people in my life. Of course, my daughter as well. yeah, so, you know, to have them all there and just to have that support and have them there to help me because when I first came out, from the time I came out of surgery, I could still speak very clearly. So I did not know what I was saying.
(24:56)
Mm-hmm.
Brandon (25:15)
Nobody could tell like I wasn’t making a lot of sense, but I never lost my voice They think that that’s because of my left-handedness Because I’m left-handed I store things like that differently in my brain So because of that I was able to keep my speech even though I cannot write I can’t do you know I mean I can write my letters, but if I try to
(25:32)
Okay.
Brandon (25:44)
make a word this was yesterday
(25:48)
Aha! Lux-
Brandon (25:50)
But I can,
yeah, it’s just scribble. It’s just scribble. Yeah, but, you know, if I try to like draw a letter or a number, I can do it, but I have trouble assigning it to its value.
(25:53)
Yeah.
Understood. So before that, were quite capable of stringing sentences together, writing things down, doing all that kind of stuff. So that’s a very big contrast.
Brandon (26:14)
I have always been known.
Huge contrast.
(26:22)
Is it frustrating that you can’t write in the way that you did before? it matter?
Brandon (26:27)
Yes, yes, I used to write all the time, know, poetry, things like that. I’ve always been considered, you know, a good writer, a good orator, public speaker, you know, that kind of thing was a big part of my life, for my whole life. And so to go from that to not being able to write a sentence on a piece of paper or even a word is really a big change for me.
You know, and I mean I do use my phone for voice to text. If I wouldn’t have had voice to text, I really don’t know where I would be right now.
(27:06)
Is that how you communicate most things?
Brandon (27:09)
Yes, absolutely. it’s- if I can’t say it, like speak it, I have to use voice to text. I can’t spell- I can’t- I can’t spell my own name half the time.
(27:17)
Dude, I love that.
Yeah, I hear you. I love voice to text. So I was told by a friend of mine about a product called Whisper Flow. I’m gonna have links in the show notes and in the description on the YouTube video, right? And it’s spelled W-I-S-P-R-F-L-O-W, Whisper Flow. And what you do is you program one key on your keyboard. And then what you do is you press that key and it activates
Brandon (27:36)
Yes.
(27:52)
the app and then you speak and it types beautifully. It types at all. And I’m a terrible like typist. I could never be one of those really quick secretary kind of people and take notes because I’m not fast enough, but it can type for me by speaking like beyond 99 words per minute, which I think is crazy fast.
Living Independently After StrokeAnd I do it because it just saves a heck of a lot of time, me looking down at the keyboard and all that kind of stuff. My left hand does work, but I can type with it, but often my left hand, you know, we’ll miss the key and I’ve got to go back and do corrections and all that kind of stuff. So voice to text, this comes such a long way and everyone needs to know, especially if they’ve had a stroke and one of their limbs is affected, especially if it’s their…
they’re riding limb or if they have a challenge like you, everyone needs to know about the fact that technology can really solve that problem. I’m pretty sure, I know this sounds like an ad for Whisper Flow, it probably is, but I’m not getting paid for it. I think they cost, it costs about hundred bucks a year to have this ⁓ service. So it’s so affordable and it does everything for you just at the touch of one button on your computer.
And for some people you can also use it on your phone. But I think phones are pretty awesome at doing voice to text already. So you don’t really need ⁓ it for the phone, but you definitely need to check it out for the computer.
Brandon (29:27)
Okay, yeah, well, you know, I pretty much have my phone. I don’t have a computer, so… But, ⁓ it does sound like an amazing product, and I am looking to get myself a computer because I really, ⁓ like, I haven’t touched a keyboard since my stroke. So, it would be nice to get myself a laptop with a keyboard so that I could start working on trying to see how that interface works for me.
(29:33)
Yeah.
Yeah. How was the transition out of hospital and rehab back to your place? and how long after the initial strike did you end up back at home?
Brandon (30:04)
Okay, so, when I, I left the hospital after, or I’m sorry, after 10 days in intensive care, they put me in the rehab hospital and I was there for four weeks. After that, they still didn’t think that I was ready to live by myself yet. So I had to, ⁓ rent a house in Joshua tree from a friend of mine who lived on the property in another house.
And so I had a whole house to myself still which allowed me to keep my independence. But I still had somebody close enough to holler if I needed anything. And so I kind of, you know, baby stepped by renting a house, you know, for a while. And, And I have property in Northern Arizona where I normally would take my off time when I wasn’t traveling. But, ⁓
But, ⁓ because of the stroke, I wasn’t able to go back to that property for quite a while. And only about Christmas of last year did I start to be able to spend some more time on my property, you know. But at this point, I’m still renting the house in Joshua Tree and starting ⁓ to branch out a little bit more, do a little bit more traveling, things like that. Now with that said…
I have been ever since the stroke happened about two months after the stroke I went back to my first music festival. So I didn’t have half of my skull. I had to wear a helmet for six months. And so here I am at a music festival with all of my friends and I’m in a helmet with half of my skull missing. But I still was able to be there and then ⁓
you know, be a part of the festival. So I got back to the activity that I enjoyed pretty fast.
(32:07)
What genre of music?
Brandon (32:09)
Well, it’s actually the Joshua Tree Music Festival in particular, which is the only music festival that I’m really involved with anymore. ⁓ They do world music. We get artists from all over the world in. And that’s kind of one of the reasons I’ve continued to be a part of this music festival and really haven’t been that big of a part of the other ones is because I’m always learning about new music when I go there. And that’s a big important part of it to me.
(32:40)
Understood. So your transition back to living alone took a little bit of time. You’re renting a place. Are you alone there? Are you living with anyone else? How is the home set up?
Brandon (32:55)
I have a home all to myself but there is a shared home on the other or on the property that a friend of mine lives in and he’s actually the one that I’m renting from so yeah
(33:09)
So you have access to support to help to people around you if necessary.
Brandon (33:15)
if I need it. also another big part of one of the symptoms of my stroke is that I don’t recognize my own disabilities. I have a lot of trouble with that. So I generally do not ask for help with things, which in a lot of cases has made me a lot stronger and I think been a big part of a speedy recovery. But at the same time, I can put myself in some kind of sketchy situations at times.
(33:43)
It’s not, are you sure it’s not just your male ego going, I can do this, I don’t need help.
Brandon (33:49)
I mean, I’m sure that that does tie into it, I’m certain. But yeah, that’s one of the things that I’ve struggled with from the beginning. And I didn’t recognize the left side of my body as my own. I thought it was somebody else’s. That wasn’t very long, just for maybe the first couple of weeks. But that was a very interesting sensation, that I felt like there was somebody else there.
(34:06)
Wow.
Yeah, it just feels like it’s my, I kind of describe my left side as if it’s because my star sign is Gemini, right? So now I describe it as being the other twin, like the other part of me, which is me, but not me. And it’s so strange to experience 50 % of my body feeling one way and then 50 % of my body feeling a completely different way, which is
Brandon (34:25)
Yeah.
Facing New Challenges: Aneurysms and Uncertainty(34:44)
the only way I remember and then tying them together, like bringing them together has been a bit of a wild ride, like just getting them to operate together. When they have different needs, my left side has different needs than my right side. And sometimes one side is getting all the love and the other side is missing out. And I’m always conflicted between where do I allocate resources? Who gets…
how much of my time and effort and who I listen to when one of them’s going, my left side’s going, I’m tired, I’m tired. My right side’s going, the party’s just started. Let’s keep going. Don’t worry about it.
Brandon (35:25)
I have to deal with that. Of course, my left gets a lot tighter than my right side, but I don’t know. think I’ve done a pretty good job of giving it that care. And a big part of where I measured my success was getting my shoulder back online and being able to pronate and go above my head. It took months to get my hand over my head. But
But at this point, you know, I’m pretty much back to physically normal except for the fine motor skills on my right, on my left side. You know.
(35:59)
Sounds like things are going really well in really small increments. And if you’re only, what, two years post stroke, sounds like recovery is gonna continue. You’re gonna get smaller, more and more small wins and they’re gonna kinda accumulate and make it pretty significant in some time ahead.
Brandon (36:17)
Right.
It’s a year and a half. So my stroke was on the 4th of November of 2024.
(36:32)
Yeah. Do you know in this whole time, did you ever have the…
like, this is too hard, I don’t want to do this. Why is this happening to me kind of moment? Did you ever have any of that type of negative self talk or thoughts?
Brandon (36:50)
no, I mean, I suppose there probably were moments, but I don’t pay a lot of attention to those kinds of moments. You know what I mean? I do kind of even without the stroke, maintain a pretty positive mental attitude, you know, and I think that that’s been one of my biggest blessings through this. ⁓ yeah. So yeah, that’s never really been a good emotion.
(37:12)
I
get a sense that you have those moments, but you don’t spend a lot of time there. Is that right? Is that what you just sort of alluded to that you have those moments, you just don’t give them a lot of time. Therefore they don’t really have the opportunity ⁓ to sort of take up residence. And then you just move on to whatever it is that you’re getting results with or makes you feel better or… ⁓
supports your project which is ⁓ recovery or overcoming or…
Brandon (37:48)
Yes.
No, I completely agree. ⁓ You know, I mean, speaking of which, four days ago, I got ⁓ a phone call from the doctors. ⁓ They found an aneurysm in my brain. So I have to go and meet with a neurosurgeon on Tuesday to discuss what we’re going to do about a brain aneurysm. So I thought, you know, I was just about back to normal.
And here I go into another situation. But again, until I know what’s going on, there’s no point in worrying about it, you know? So I’ll know more about it on Tuesday, but until then, I’m not spending a whole lot of time wondering, you know, am I just going to have an aneurysm and collapse tonight? You know?
(38:36)
that tends to be my default as well. I was really good as a kid. ⁓ When I was being cheeky and not doing my homework for school, I would go to bed and I would remember, I haven’t done my homework. And then I’d be like, yeah, but you can’t solve that problem now. Now you got to sleep, right? So you got to worry about that in the morning after you’ve had a good night’s sleep and you wake up and then deal with it. And that was a strategy to help me forget about that.
minor problem, which back then, if you haven’t done your homework as a teenager, that was a big problem. If your teachers found out, if your parents found out, but the idea was that, don’t I just pause all of the overthinking? Why don’t I just pause all of the rumination and all the problems and all that stuff that it could cause for now. And I’ll worry about it when there’s a opportunity to have the resources to do something about it.
And the classic example was in the morning, I would have an hour before school where I could reach out to one of my friends, take their homework, copy their homework, and then hand in my homework.
Brandon (39:46)
Absolutely. Yep, that was very much like me in school.
(39:51)
Yeah, not much point worrying about things you can’t change or control in the moment. Just pause it, deal with it later. I had a similar situation with my bleed in my brain, because I had a number of different bleeds and it was kind of in the back of my mind a little bit. What if it happens again? But it actually never stopped me from going about life from bleed one through to bleed two.
was only six weeks, but like through blade two to blade three, it was about a year and a half. But I got so much done. I was, we were just going about life. was struggling with memory and all different types of deficits because of the blood clot that was in my head. But I never once kind of thought about what if something goes wrong, unless I was traveling.
to another country, because we did go to the United States when I was about almost a year after the first and second bleed, we went to the United States. And then I did worry about it from a practical sense. It’s like, if I have a bleed in Australia, I’m near my hospital and then they can take over from where they left off previously and healthcare is paid for here. So there was no issue.
But if I’m overseas and something goes wrong, I’m far away from home, we got to have the expensive insurance policy. Cause if something goes, I want to be totally covered when I’m in the United States, we don’t know the system. don’t know all these things. So that was a practical worry that I had, but I didn’t worry about my health and wellbeing. Do you know? I worried about the practicality of having another blade in the airplane because then I’m in the middle of the ocean.
over halfway between Australia and the United States. And that’s eight hours one way or another or something. And I thought about that, but I didn’t think about how I would be personally ⁓ negatively impacted by the medical issue. I just thought about the, do we get help as quickly as possible if something were to happen? So I know a lot of people have a stroke and they,
Brandon (41:55)
Right.
Support Systems: Finding Community After Stroke(42:18)
⁓ They overthink about what if it happens again and they’re constantly kind of got that on their mind, but I was dealing with just the moments that made me feel like perhaps I should do something about this headache that I’m getting. I dealt with things as they appeared, as they turned up, I didn’t try to plan ahead and solve every problem before it happened.
Brandon (42:24)
Yeah.
Yes, I agree. I’m very much the same way. You see, before my stroke, I didn’t have medical insurance. I hadn’t seen a doctor since my early 20s. just, I was, I was, I had always been extremely healthy. You know, I’ve always been very physically active, you know, and, so it just, I never really, I never really ⁓ went out and looked for medical. I just didn’t need it, you know? And so,
When the stroke happened, I was very lucky to get put on California’s healthcare plan. And they’ve taken care of all of my medical bills. ⁓ You know, I’ve never pulled a single dollar out of my pocket for all the rehab, all the doctors since. And I mean, I have doctors still once every week, two weeks at the most, doctor visits, you know? And so I’m extremely fortunate.
that it happened to me where I was, you know, because not all states here are like that, but California is extremely good. So, you know, I’m really grateful that it worked out the way it has because it could have been a whole different situation, man.
(44:00)
I have heard some horror stories about medical insurance for people who are not covered, have a stroke and then they leave hospital with like a $150,000 bill or something. Is that a thing?
Brandon (44:13)
Yes, it really is. I mean, I was extremely fortunate. By the time I got out of that first 10 days with the helicopter ride and everything else, I was close to $2 million in bills.
(44:25)
Dude, that’s mental.
Brandon (44:26)
Yeah. And, ⁓
yeah, I mean, it just doesn’t really, I mean, you know, I mean, I’m not a big fan of, the way that the medical system works money wise. think it’s all just paper or fake money, just fake numbers, you know, but yeah, I don’t know. I just, ⁓ I was extremely fortunate that it all happened the way that it did and that California is so good and they really do take care of their citizens, you know, so.
(44:54)
Yeah, I love that.
Brandon (44:55)
Yeah, very
fortunate.
(44:57)
You know, in your recovery, did you have somebody that you kind of leaned on for support that was a confident, ⁓ that was like a mentor or did you have somebody like that in your life that was really helpful in your recovery?
Brandon (45:15)
Actually in about the year before my stroke I lost the three gentlemen that I had always considered my mentors, older guys that I’ve known for years. They all three passed away the year before my stroke. So I really kind of felt on my own. You know, I have a lot of friends, you know, but ⁓ but after my stroke I really don’t have the brain space for like Facebook or anything like that.
So I really, closed down my very active Facebook account and when I did that, I lost so many people that would have been my support because I just, they weren’t there, you know, in real life. They’re only there on the computer, you know? And so, but luckily, you know, I’m a part of the community in Joshua Tree. So I had a lot of support from people there and… ⁓
Then I have probably four or five other friends that are scattered around the United States that I keep in touch with pretty closely. But I went down from talking to hundreds of people a month and all of that on the internet to really a very small closed social circle, you know? And then in addition to that, surprisingly,
people that I’ve known for years just are not very good at accepting the differences in who I am as a person since the stroke, you know? And so, you know, I hate to say it, but a lot of friendships have kind of gotten a lot more distant since the stroke. you know, it’s just, I mean, it is what it is. You know, people have to do what they feel is right for themselves, you know? But yeah, I really… ⁓
Identity Shift: Life Changes Post-Stroke(47:06)
Yeah.
Brandon (47:07)
I don’t have a very large support network. You know, I just basically kind of take care of a lot of it myself. You know, I mean, I did two and a half months of outpatient rehab with a occupational therapist. And what’s the other one? Occupational and physical therapy.
(47:33)
Mm-hmm.
Brandon (47:33)
So I
did occupational and physical therapy for about two and a half months after I got out of the hospital. And that was all really good and helpful. And ⁓ I’m really grateful for those therapists that worked with me. And they helped me get ⁓ basically back to a normal cadence because I was having trouble putting one foot in front of the other. And they really helped me work on my cadence and getting my walk back to fairly normal. ⁓ My arm.
has been mostly me. It has never been able to be rushed. It takes its own time. So even with the physical therapy, my hand coming back, it works at its own pace. That was never really influenced that much by physical therapy. And then my actual use of my hand, I was balled up. I was curled up and balled up to the wrist.
after the stroke and eventually I got to where I could hold it out flat and I still tremor a lot there but it’s a lot better than it was and but yeah all of that had to come back at its own pace the physical therapy and stuff was helpful for a lot of other aspects of my recovery but that was all just taking its own time and coming back as I guess as it did my brain learn to re-communicate
(48:58)
Yeah, it sounds, it sounds like you’re kind of really well made up somehow, like you picked up the skills early on in your life to be able to deal with this situation. The way that you do is just amazing. Like it’s
seems like it’s second nature, the way that you go about approaching the problems, the challenges, the difficulties, know, the missing half your skull, all that thing. It just seems really innate that you have that within you. you, people are listening and going, you know, that’s not me or I didn’t experience that or I’m overthinking things. Do you think that’s the way that you’re approaching things is teachable, learnable? Can people change the way
that they’re going about ⁓ relating to their stroke or dealing with their stroke or managing it.
Brandon (49:53)
⁓ you know, I think that that you’re going to find that a lot of people, can be taught and a lot of people, can’t be taught. You know, some people’s nature just is not going to be able to handle that. But other people, you know, I think that you can go through very real processes to gain, ⁓ knowledge base, you know, to be able to start working with it. You see another big aspect of my recovery.
is that I immediately after my stroke and getting out of the hospital moved eight hours away from UC Davis Hospital where my original care providers were. So I had to go through a whole new medical plan, a whole new set of doctors and everything else. And that changed on me like three times over the first six months. So I really couldn’t rely on the doctors for support either.
because they were changing so often I would just meet one and the next thing I would know I would have a new doctor coming in or a new healthcare plan and so it took about six months for me to start seeing the same healthcare providers routinely so I went to YouTube University man I found you I found several other people that had these just these huge amounts of information
you know, on how to handle my own recovery. So I took a lot of my own recovery into my own hands. And actually, ⁓ a week ago, I was talking to my neurologist, who is a really amazing lady, and, you know, and had to tell her pretty much that same story that, you know, I couldn’t leave it up to the doctors to fix me. I had to take care of myself.
because of my situation and switching insurance and everything else that I went through, there was just not that much option. ⁓ so, you know, and she was like, I wish that all of my patients had that kind of an outlook. You cannot rely on the medical system to fix you. You know, we were talking about what can help people. I think that’s a really big thing that could help a lot of people is
to realize that you have to take care of your health care decisions. You know, they found a PFO in my heart, a ⁓ Framon Parabot.
(52:24)
A patent for
Ramen Ovali. Hole in your heart.
Brandon (52:28)
Yes,
yeah, they found that and they wanted to fix it and I was like, you know, I’m 47 years old. This is a one-time thing. So I opted to have a loop recorder installed, a loop recorder to measure my heart rhythm and everything and send messages to the doctors at nights about my heart. So that because I thought that was a little bit less invasive.
For my age, the last thing I want is for later in life, my body to start having problems with an implant that’s in my heart. So I decided not to go with that and to go with the less invasive loop recorder, which is still implanted under the skin in my chest, but it doesn’t affect my heart.
(53:08)
Thank you.
Brandon (53:21)
It just sends the information
about my heart rhythm to the doctors so that they can keep track.
(53:26)
and it can be easily
accessed and removed.
Brandon (53:30)
Exactly, exactly. So, you know, I mean, if I have another stroke or if I find through the little device that I’m having trouble with that PFO, you know, then I’ll get the PFO closure done. But until then, I didn’t want to just jump straight to that, you know, three months out of my out of my stroke. You know, I want to make sure that that’s the problem.
because they did pull a 3mm blood clot out of my brain. So there’s a good chance that that went through the PFO and into my brain. But I was also way outside of my normal activity range trying to rock climb the day before. So there’s just, there are too many variables about the experience for me to just want to go and have something installed in my heart permanently, you know?
(54:28)
I hear you. What about the aneurysm? Where is that? What’s the long-term kind of approach to that?
Brandon (54:35)
Don’t know yet. I do not know anything about it. I’ll find out more information on Tuesday They said it’s not it’s not in the same part of my brain that my stroke was So that’s a good thing and there’s a good chance that it may have been there for a long time before the stroke So we just don’t know I don’t know anything about it So that I’m gonna go and meet with this neurosurgeon and decide what we’re gonna do about it
(54:42)
that’s right.
Brandon (55:03)
I think the most likely option, as long as it’s not big, is that they just wait and they monitor it. But there’s also a process where they coil it. They put a coil of platinum into it and pack it off so that it can’t become a problem later. And then the third scenario is that they take another piece of my skull off and go in and actually put a clip on it.
to stop the blood from going into it. So I may actually have to have my skull open back up again. But, again, there’s no point in thinking about it now. I’ll think about it after Tuesday when I figure out where this thing is, what size it is, and all the details of it, you know?
(55:46)
Yeah.
I love it. I love it. I love that man. That’s a great way to approach it. Also, ⁓ I love your comment about YouTube University. I love the fact that people find my podcast sometimes when they’re in hospital because clearly they realize I need to ⁓ learn more about this, understand it and ⁓ straight away they’ve got answers because of YouTube. it’s such a great service. It’s free. If you don’t want to pay for a paid service and all you got to do is put up with
ads that you can skip through most of the time. So I think that’s brilliant. ⁓ What about your identity, man? People have a lot of kind of ⁓ examples of how they have a shift in their identity, how they perceive themselves, how they fit into the world. Did you feel like you have a shift in your identity or the way that you fit into the world? What’s that like for you?
Brandon (56:46)
Well, I mean, I definitely do feel like there was a big shift. Now at the core, I feel like the same person. know, mentally, I still feel like I know who I am, but it definitely has shifted my priorities in life a lot. ⁓ I did not raise my daughter and I developed a much closer relationship to her since the stroke.
and we’ve been spending more time together and just really working on our relationship together. She’s 28 years old. So, you know, that has really been an amazing aspect of my stroke recovery is that I’m closer with my daughter than I ever was. But yeah, I mean, you know, I do things a lot differently. I was a heavy smoker, a heavy drinker, and a heavy marijuana user.
I don’t smoke marijuana, don’t smoke cigarettes, and I don’t drink alcohol anymore. So huge change in my lifestyle as well. ⁓ But you know, I just I’m not as much of a hurry as I used to. I was always accused of my mind working on too many levels at one time, you know, and had too much on my plate, too much going on in my brain all the time. Now.
My brain doesn’t keep up as well. So I struggle to stay on one subject, much less juggle multiple things in my brain. So it’s really kind of slowed down my whole mental process. But I think that again, that’s in a good way. I think that ⁓ I needed to slow down a little bit in a lot of ways.
Lessons Learned: Insights from the Journey(58:31)
I hear you. With the alcohol, marijuana and the smoking. So you might’ve been doing that for decades, I imagine, smoking, drinking.
Brandon (58:43)
Yes.
(58:44)
how do you experience your body differently now that it doesn’t have those substances in it anymore? Like, cause that’s a mass, that’s probably one of the biggest shifts your consumption of, we’ll call them, I don’t know, like harmful ⁓ things, you know, like how, so how do you relate to yourself differently now that those things are not necessary?
Brandon (59:12)
You know, I never really had like an addictive aspect. So I really don’t, I don’t feel like, ⁓ I mean, I don’t feel like it’s changed me a whole lot. I just had to take the daily habits out. But after spending a month in the hospital, all of the physical wants, all of the physical aspects of it were already taken care of, you know? So I just had to kind of maintain and not go back to old habits.
So really, I mean, I don’t feel like it was that big of a difference. But now physically, I’ve always been an extremely skinny person. You know, I’m six foot one and I’ve always weighed 135 to 145. Now I weigh 165. So I did put on some weight after stopping all that. But other than that, really don’t notice a lot of
⁓ physical differences. Now, I have not coughed since my stroke. I used to wake myself up at night coughing, but for some reason, like literally when I had the stroke, I have not coughed since. Now I clear my throat a lot more and I have a lot of, we’re trying to figure out why, but I have a lot of problems with my sinuses.
and stuff like that all on the side that I my injury was on this side but on the side the mental side like where it’s all mental stuff that changed the you know all of that I have problems with my sinuses and drainage and things like that so right now I’m seeing an ear nose and throat specialist and we just did a cat scan of my sinuses so I’ll see on the 13th of this next month
I’ll get more information on about what’s going on there. ⁓ really, if that’s all I have to deal with is a one-sided sinus infection, I’m okay with that, you know?
(1:01:23)
Brandon, you’re all over it, man. I love your approach. It’s ⁓ refreshing to hear somebody who’s just so all over getting to the bottom of things rather than kind of just letting them kind of fester, which kind of leads me to my next question is you seem to have gained a lot of learning and growth from all of this. So what… ⁓
What are some of the insights that you gained from this experience that you didn’t expect?
Brandon (1:01:54)
⁓ No, I’m really not sure, man. I’m really not sure. I mean, again, I feel like pretty much going back to the same person. I mean, I have, I think, a little bit more respect for the human lifespan. You know, I was one of those people that always felt like, since I’ve never died, I can’t tell you that I’m going to die. Even though everybody else on the planet has to die, I never necessarily felt like that. I definitely feel mortal now, you know?
I used to tell everybody that I still felt 25, but as soon as I had my stroke, felt 48. I felt every bit of my age. So it kind of cured me of that. You know, I pay a lot more attention to like, you know, things like, setting up my daughter for the future, you know, and like,
Purchasing property for her and things like that to make sure that she’s gonna be taken care of when I’m not here anymore Things that I never paid attention to beforehand, you know, I always just lived in the moment Really didn’t care about the rest But now I’m more prone to put the work into my vehicle before it breaks down Instead of just waiting for it to be on the side of the road to fix it You know, I just I I think that I handle my life
responsibilities more like a grown up than I used to, you know, but ⁓ but really, I don’t know, I’d say overall though, it’s still really difficult question to answer, man. I don’t I don’t feel like I live a lot differently. I feel like I’m still the same person, you know.
(1:03:35)
You nailed it, man. You answered it beautifully, especially the part about mortality. That’s a hap that happened to me. I realized at 37 that, ⁓ I actually might not be around in 12 months, six months, three months. So who knows like tomorrow. And that made me pay attention to my relationships and make sure that they were mostly mended healed. Reach. I reached out to people who I needed to reach out to. cut off people who I didn’t need to continue connecting with.
Brandon (1:03:51)
Right?
(1:04:05)
You know, like I realized that this, I’ve got to attend, attend to certain things that I hadn’t been attending to because if, ⁓ if the shit hit the fan, if things go really ugly, then I wouldn’t be able to attend to those things. And I, now that I had the ability to do it, was my responsibility to do that.
Brandon (1:04:28)
Absolutely, absolutely. I completely agree. I did the same thing. I cleared out a lot of the people that really weren’t being, you know, or that weren’t adding benefit to my life and causing problems in my life. I cleared all of that out. I started to focus more on the core group of people that were a big part of my life and, you know, my recovery and just, you know, who I am as a person. And just, you know, it really made me
take a better look at the life that I had created for myself and and ⁓ and Just take care of the things that I should be taking care of and don’t pay as much attention to the things that weren’t serving me
(1:05:12)
Yeah, it’s a great way to continue moving forward. Your daughter, does she live nearby or does she live in another state?
Brandon (1:05:21)
She lives in another state. She lives in Alabama right now, but we’re starting to consider her coming out here to Arizona. Her and her boyfriend have lived there for several years, but the only reason she was living there is because her grandparents lived there on her maternal side, and she was very close to them for her whole life. But they passed, both of them, over the last several years. And, you know, she enjoys her work. She enjoys her friend group.
But she also feels like she might need to go and explore a little bit more and move out of her comfort zone. So she might be a little bit closer sooner. Her and her boyfriend might actually move out here. we’ll just, know, only time will tell, but it’s just, it’s a fun thought, you know?
(1:06:08)
Yeah, I hear you. So we’ve shared a whole bunch of amazing things on this episode right now. The last question I want to ask you is there are people watching and listening that had either been listening for a little bit of time. They’ve just started their stroke recovery or they’re on a different part of their journey of recovery. Do you have like a little bit of, I don’t know, a wisdom, something that you’d like to kind of leave them with, with regards to
this whole journey, you maybe your greatest lesson. don’t know. Like, is this something that you would like to say to people who are watching and listening who might be going through this journey as well?
Brandon (1:06:50)
⁓ you know, keep pushing, keep pushing because seriously, at a year, I still didn’t feel as good as I do now. You know, it’s six months, all those times, all the measure points that the doctors give you, all of the timeframes that they tell you, don’t take any of it to heart. Every stroke is different. Everyone’s recovery is different. If you feel like it’s rushing you,
Slow down. If you feel like it’s going too slow, speed up. know, but take it in your own hands. Your recovery is yours, not your doctor’s.
And I guess that’d be it.
(1:07:28)
That’s profound,
That’s profound, my friend. I really appreciate you reaching out. ⁓ Thanks for sharing your story. I had such a great time chatting to you, getting to know you a little bit.
Brandon (1:07:38)
Yeah, no, absolutely, and the same, man. Again, I wish we were closer. Next time you’re in the States, if you come back, let me know. I’d love to hang out. I’ll come and drive to you. We’ll hang out. We’ll have a good time,
(1:07:52)
That’d be awesome. Thanks for being on the podcast.
Brandon (1:07:55)
Absolutely man and look for my order for your book in the next few hours here I’ve been waiting on some money situations to clear up that actually just resolved today But I will be picking up the book even though I can’t read yet I’m picking up the book so that when I get there, it’ll be the first thing that I dive into
(1:08:16)
Thank you man, that’s so generous of you man. I really appreciate it. Thanks so much
Bill Gasiamis (1:08:21)
Before you go, I want to leave you with one thought. If something in today’s episode resonated, if you found yourself thinking, that’s me, that’s exactly what I’m dealing with, then I want you to know something important. Recovery isn’t just about what happened to your brain. It’s about how you respond next, emotionally, mentally, physically, and socially.
That’s what my book, The Unexpected Way That a Stroke Became, The Best Thing That Happened is about. It brings together the 10 tools that stroke survivors, including me, unknowingly use to move from surviving to growing. You shouldn’t have to piece this together on your own. And now with this book, you won’t have to. You can find it at recoveryafterstroke.com/book. And if this episode helped you, consider sharing it with someone who might need it or leaving a comment to let others know.
that they’re not alone either. I’ll see you in the next episode.
The post Craniotomy Stroke Recovery: How a Massive Medical Event Reshaped One Man’s Identity and Way of Living appeared first on Recovery After Stroke.
Heard a Pop in My Head: The Stroke Warning Sign Most People IgnoreWhen Phat heard a pop in his head, it didn’t feel dramatic.
There was no collapse. No sirens. No panic.
Just a strange sensation.
A few minutes of numbness.
Then… everything went back to normal.
So he did what most people would do.
He ignored it.
Five days later, he was being rushed to the hospital with a hemorrhagic cerebellar stroke that nearly cost him his life.
This is not a rare story.
It’s a dangerously misunderstood stroke warning sign and one that often gets dismissed because the symptoms disappear.
When You Hear a Pop in Your Head, Your Brain Might Be Warning You“Hearing a pop in my head” isn’t something doctors list neatly on posters in emergency rooms.
But among stroke survivors, especially those who experienced hemorrhagic strokes, this phrase comes up more often than you’d expect.
For Phat, the pop happened while stretching on a Sunday. Immediately after:
- His left side went numb
- The numbness lasted about five minutes
- Everything returned to “normal”
No pain. No weakness. No emergency, at least that’s how it felt.
This is where the danger lies.
Stroke Symptoms That Go Away Are Often the Most MisleadingOne of the most common secondary keywords people search after an experience like this is:
“Stroke symptoms that go away”
And for good reason.
In Phat’s case, the initial bleed didn’t cause full collapse. It caused a slow haemorrhage, a bleed that worsened gradually over days.
By Friday, the real symptoms arrived:
- Severe vertigo
- Vomiting and nausea
- Inability to walk
- Double vision after stroke onset
By Sunday, his girlfriend called an ambulance despite Phat insisting he’d “sleep it off.”
That delay nearly killed him.
Cerebellar Stroke: Why the Symptoms Are Easy to MissA cerebellar stroke affects balance, coordination, and vision more than speech or facial droop. That makes it harder to recognise.
Common cerebellar stroke warning signs include:
- Sudden dizziness or vertigo
- Trouble walking or standing
- Nausea and vomiting
- Double vision
- Head pressure without sharp pain
Unlike classic FAST symptoms, these can be brushed off as:
- Inner ear issues
- Migraine
- Muscle strain
- Fatigue or stress
That’s why “pop in head then stroke” is such a common post-diagnosis search.
The Complication That Changed EverythingPhat’s stroke was classified as cryptogenic, meaning doctors couldn’t determine the exact cause.
But the consequences were severe.
After repairing the bleeding vessel, his brain began to swell. Surgeons were forced to remove part of his cerebellum to relieve pressure and save his life.
He woke up with:
- Partial paralysis
- Severe balance impairment
- Double vision
- Tremors
- Aphasia
- A completely altered sense of identity
Recovery wasn’t just physical.
It was existential.
The Invisible Disability No One Warns You AboutToday, if you met Phat, you might not realise he’s a stroke survivor.
That’s one of the hardest parts.
He still lives with:
- Fatigue
- Visual processing challenges
- Limited multitasking ability
- Balance limitations
- Cognitive overload
This is the reality of invisible disability after stroke when you look fine, but your nervous system is working overtime just to keep up.
Recovery Wasn’t Linear — It Was PersonalPhat describes himself as a problem solver. That mindset became his survival tool.
Some of what helped:
- Self-directed rehabilitation (sometimes against advice)
- Meditation and breath-counting to calm the nervous system
- Vision therapy exercises to retrain eye coordination
- Strength and coordination training on his affected side
He walked again after about a year.
Returned to work after two.
And continues to adapt more than four years later.
Recovery didn’t mean returning to the old version of himself.
It meant integrating who he was with who he became.
Why This Story Matters If You’ve Heard a Pop in Your HeadThis blog isn’t here to scare you.
It’s here to clarify something crucial:
If you hear a pop in your head followed by any neurological change, even if it goes away, get checked immediately.
Especially if it’s followed by:
- Numbness
- Vision changes
- Balance issues
- Confusion
- Head pressure or vertigo
Stroke doesn’t always announce itself loudly.
Sometimes it whispers first.
You’re Not Alone — And Recovery Is PossiblePhat now runs a platform called Hope for Stroke Survivors, sharing stories, tools, and reminders that recovery doesn’t end when hospital rehab stops.
If you’re early in recovery, or terrified after a strange symptom, remember this:
- Stroke recovery is complex
- Timelines vary
- Healing continues for years
- You don’t have to do it alone
???? Learn more about recovery journeys and tools in Bill Gasiamis’ book:
The Unexpected Way That a Stroke Became The Best Thing That Happened
???? Support the podcast and community on Patreon:
Patreon.com/Recoveryafterstroke
“I heard a pop in my head… and because everything felt normal again, I ignored it.”
Final ThoughtIf this article helped you name something you couldn’t explain before, share it with someone you love.
Because sometimes, recognising a stroke doesn’t start with fear.
It starts with understanding.
Disclaimer:
This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
“I Heard a Pop in My Head” — Phat’s Cerebellar Stroke StoryA pop. Five minutes of numbness. Then everything felt “normal.” Days later, Phat collapsed with a cerebellar haemorrhage.
Phat Cao’s Linktree
???? Research shortcut I use (Turnto.ai)
I used Turnto.ai to find relevant papers and sources in minutes instead of hours.
If you want to try it, my affiliate LINK
PDF Download
The Present Moment Is All We Have: You survived the stroke. Now learn how to heal from it.
Highlights:
00:00 Introduction and Life Before the Stroke
01:14 The Stroke Experience
09:05 Initial Diagnosis and Recovery
13:29 Rehabilitation Journey Begins
17:44 Mental Challenges of Recovery
22:40 Identity Transformation Post-Stroke
30:57 Mindset Shifts and Control
36:39 Breath Control Techniques for Stress Relief
42:04 Managing Tremors and Physical Recovery
48:09 Growing an Online Presence and Sharing Stories
01:01:01 Understanding Stroke Recovery
Transcript:
Phat (00:00)
on a Sunday. And then it wasn’t until I felt like severe stroke symptoms on a Friday, which was about, what is it, four or five days. And then I didn’t think I was having a stroke because I didn’t realize the details of the stroke.
And so I just went about my day on that Sunday and until Friday I started getting like some BEFAST symptoms and then, you know, I tried to sleep it off it was actually just me and my girlfriend at the house and then she didn’t feel, comfortable. So then she called the ambulance, even though I told her I’ll just sleep it off. It’s okay.
Introduction and Life Before the StrokeBill Gasiamis (00:37)
today’s guest is Fat Kyle, a stroke survivor who experienced something most people would brush off. He heard a pop in his head. It went away, so he kept going. Days later, his brain was bleeding.
Fat story isn’t traumatic for the sake of it. It’s honest, it’s thoughtful, and it speaks directly to anyone who’s ever ignored a symptom because it didn’t last. In this conversation, we talk about delayed stroke symptoms, cerebellar hemorrhage, identity loss, invisible disability, meditation, and what it really takes to rebuild a life when your old one disappears.
And if you’ve ever had that moment where you thought, was that something or nothing? This conversation really matters. Now, before we get into it, I want to briefly mention something that fits naturally with this topic. When you’re dealing with stroke, whether you’re newly affected or years into recovery, finding clear relevant information can be exhausting.
research opinions, patients, stories and updates constantly coming out. And most of it isn’t written.
with stroke survivors in
tool I personally use and find helpful is Turn2. I like it because it cuts down the time and energy it takes to stay informed. Instead of digging through endless articles, Turn2.ai pulls together all stroke-related research updates, expert insights, and patient discussions in one place based on what you actually care about. It’s not about replacing doctors, it’s about reducing noise.
when your focus, energy and capacity are limited. You’ll find the link in the description. And just to be transparent, if you choose to use my link, it helps support the podcast at no extra cost to you.
All right, let’s get into Fats story.
Bill Gasiamis (02:23)
Phat Cao Welcome to the
Phat (02:26)
Hey Bill, thank you. It’s an honor to meet you.
Bill Gasiamis (02:29)
pleasures all mine. I pronounce that correctly?
Phat (02:32)
Yeah, you know you did. It’s not that complicated. Fat Cal is right. I blame my parents.
Bill Gasiamis (02:39)
Fair enough. that a common name in Vietnam?
Phat (02:42)
You know, it’s not a common name. Actually, it’s not a common Vietnamese name. But a lot of people do have fat, the first name, and then the last name people do. Some people do have it. It just happens in America, it means something else, you know, in English.
Bill Gasiamis (02:58)
It totally does, it sounds like I’m being mean.
Phat (03:01)
Yeah, I get it all the time. I’ve had to grow up like this. It’s been kind of rough.
Bill Gasiamis (03:08)
I hear you. Have you ever considered making a change to one of the names just for the sake of ease?
Phat (03:15)
Phat’s so funny. You know what? Because I wasn’t born in the US, because I live in the US. And when I got my citizenship, that was something I thought about. But then after I thought about it, I’m like, well, this is the name that was given to me. Vietnamese, it means something else. And so then I decided to keep it.
Bill Gasiamis (03:33)
What does it mean in Vietnamese?
Phat (03:34)
Phat was kind of like,
means prosperity and also like high prosperity.
Bill Gasiamis (03:41)
Dude, that’s a cool name.
Phat (03:43)
Thank you, yeah. Yeah, so yeah, when I tell people, they’re like, oh wow.
Bill Gasiamis (03:47)
I had, ⁓ my name is not Bill, it’s Vasili. Phat’s my Greek name. My parents gave me that name when I was born. And when I had, when I turned 18 and I got my driver’s license, they asked me, because my birth certificate says Vasili, what do you wanna have on your driver’s license? And I think I made the wrong decision then. I chose Bill for the sake of ease of use.
And once it’s on your driver’s license, then it goes on pretty much every other document after that. And it’s really difficult to go back and change everything. I kind of, I don’t regret it, but I love the connection to your roots, you know, with the original name that you were given.
Phat (04:23)
Yeah.
⁓ yeah.
I get, you know what, I had that decision too, because everyone pretty much in my family, they changed their names. So, you know, when I was at that point, I decided not to. And so, hey, it is what it is. You know, I had to go through some stuff, but I think it kind of set, it created me to, you know, to kind of not care so much and just embrace my roots.
Bill Gasiamis (04:59)
Yeah. And with a name like prosperity, it’s probably helpful in taking, that attitude to the rest of your life, especially after a stroke, man.
Phat (05:11)
Yeah, yeah, definitely I had to live it, you know, but yeah. I don’t know how prosperous or how much that is since I had a stroke, but I had to live it.
Bill Gasiamis (05:25)
You have to adapt it somehow. So what was life like before stroke? Anyway, how did you go about your day?
Phat (05:32)
You know, before the stroke, was active. You know, I like to do a lot of community service. I was involved with a lot of nonprofits. You know, I felt like I did various things. You know, I went through a lot of different stages in my life, but I’ll start off coming to America here. You know, I grew up in a trailer home. My parents escaped Vietnam, took us over here. And, you know, we grew up
pretty poor and so you know he’s just growing up in the US my parents didn’t know a lot of English and so that was kind of my childhood. But just growing up and slowly you know learning how to adjust you know that was kind of my thing and I was trying to learn as much as I could so that way I can help my family and stuff and you know be the one to provide and stuff too and help them out for all their sacrifices. But yeah that was my life before the stroke in a nutshell.
Bill Gasiamis (06:31)
What kind of
conditions did they escape?
Phat (06:33)
You know what, was towards, it was at the end of the war and so the communists had taken over. So they were fighting for the South, you know, which is allies with the U.S. and they wanted to bring us over here for freedom.
Bill Gasiamis (06:48)
Wow, pretty intense. old were you?
Phat (06:49)
Yeah.
You know, I was one year, not even one years old when I got over here, but during when they escaped, they went to a refugee camp in the Philippines and that was where I was born. I also have two older sisters that were born in Vietnam, but I was the only one born in the Philippines at the refugee camp until they got, they got accepted to the U.S. and then they took our whole family over here.
Bill Gasiamis (07:16)
And what year was that?
Phat (07:18)
Phat was 1983.
Bill Gasiamis (07:20)
Dude, you don’t look like you were born like in 1983. You look like you were born only like in the 2000s.
Phat (07:24)
Hey, I appreciate it.
No, I was born in 1983. So I’m 42 right now.
Bill Gasiamis (07:34)
Now you don’t look like you’re 42, but that’s great.
Phat (07:38)
I it. Yeah, you know, I had the stroke when I was 36. So it’s been about four years and seven months. I did a calculation.
Bill Gasiamis (07:48)
How did that come about? happened? How did you end up having a stroke?
Phat (07:54)
You know, as far as the stroke, I had a hemorrhagic stroke. It was actually a cerebellar stroke and the doctors could not determine exactly how it happened. And so, you know, they did some tests and stuff, but they couldn’t figure it out. So mine is considered cryptogenic.
Bill Gasiamis (08:13)
Defend the means.
They found the bleeding blood vessel though, right?
Phat (08:19)
Yeah, they found a bleeding. ⁓ One of the arteries in the cerebellum was bleeding. And so it was like, I felt like a
on a Sunday. And then it wasn’t until I felt like severe stroke symptoms on a Friday, which was about, what is it, four or five days. And then I didn’t think I was having a stroke because I didn’t realize the details of the stroke.
Heard a Pop in My HeadAnd so I just went about my day on that Sunday and until Friday I started getting like some BEFAST symptoms and then, you know, I tried to sleep it off and until, you know, it was actually just me and my girlfriend at the house and then she didn’t feel, you know, like comfortable. So then she called the ambulance, even though I told her I’ll just sleep it off. It’s okay.
Bill Gasiamis (09:14)
Did you actually hear a pop? Felt a pop? I’ve heard similar stories before. like, what was that like?
Phat (09:22)
Okay, you know, I did feel a pop. And then actually, when I was stretching at that time, which I don’t tell a lot of people because it sounds really funny, but I was stretching at that time and then I felt a pop. And so that’s when like part of my left side went numb. And then I was wondering if it was a stroke and I didn’t know much about strokes, right? You have your assumptions.
what a stroke is and so I was like, well maybe it’s a stroke and at that time I waited about five, 10 minutes and I felt normal again. So then I just went about my day and at that time I was doing a lot of stuff so I kind of forgot about it. Which, you know, it doesn’t make sense but yeah, I forgot about it.
Bill Gasiamis (10:13)
Did the numbness hang around the entire five days before you got to the hospital?
Phat (10:19)
It did not. It only stayed for about five minutes and then it went back to normal.
Bill Gasiamis (10:25)
Wow. Phat would kind of distract you from thinking that there was something wrong, right? Because the numbness goes away. hear a pop, so what? Like everything’s fine.
Phat (10:26)
So then…
Yeah.
Yeah, then I should
have went to the hospital and got it sort of looked into, but at that time I didn’t. And then I just continued with what I had to do and I went back to work and not realizing it was a slow bleed. You know, I think your body, now that I’m looking back, I think your body kind of fixes itself a little bit as much as it can. And then it was like, it turned into like a slow bleed until it got to a point where.
Bill Gasiamis (10:50)
realizing it ⁓
Phat (11:04)
I was nauseous, I couldn’t walk my vertigo, I was throwing up. My eyes, I had double vision, and that’s when it really hit me.
Bill Gasiamis (11:05)
just being vicious. I could be little bit of wimp, I could be the longest three in the I know why.
Friday would have been the worst day, was that kind of progressively getting worse as the days were passing or did it just sort of suddenly come on on Friday?
Phat (11:15)
Friday.
It just suddenly came on on Friday. I had a lingering like small headache, but then it suddenly came on on Friday.
Bill Gasiamis (11:27)
Thank
Hmm. And then from there, were you, let’s go to the hospital or were you trying to play it down again?
Phat (11:40)
I was trying to play it down until Sunday. So I was trying to sleep it off. And then, you know, by the time Sunday hit, you know, finally my girlfriend just called the ambulance and that’s when they came and then they checked me out and they found out I was having a stroke.
Bill Gasiamis (11:58)
I had a similar experience. I noticed, I didn’t hear anything, but I noticed numbness in my big toe, my left toe. And that was on a Friday. And then it was slowly, the numbness was spreading from my toe to my foot, to my ankle. And then by the Friday later, so seven days later, nearly eight days later, the numbness had gone down my entire left side.
Phat (12:07)
Mmm.
Bill Gasiamis (12:27)
So I was progressively getting worse every day. It was slowly creeping up as the blood vessel kept leaking. The blood clot got bigger and bigger. And my wife was telling me, you need to go to the hospital. You need to get a checked out, all that kind of stuff. I went to the chiropractor because I thought I’d done something to my back. And that’s why I had a pinched a nerve. I thought something like that. Chiropractor couldn’t find anything. I went back to the chiropractor the Friday. The chiropractor said, you need to go to the hospital because
whatever’s happening to your left side is not happening because of your ⁓ back or your spine or any of that stuff. And instead of going to the hospital when he said so, I went home. My wife said, you what did he say? I told her, I told her that he said I should go to the hospital. She said, why are you at home? ⁓ I was reluctant the whole time. Like I didn’t wanna go because I had work to do, I was busy.
Phat (13:13)
Really?
Rehabilitation Journey BeginsBill Gasiamis (13:26)
It was really busy work week. We were helping out a whole bunch of clients. So yeah, it was insane, but what you’re describing that delay, the delay is very familiar.
Phat (13:35)
Phat’s insane.
You know, that’s the first time I’ve heard someone that has a similar experience to mine and I can relate with you. You know, I was like, it’s okay. And there was a lot going on. didn’t want to, you know, delay certain things that was going on. I was in the process of closing on a house and stuff. So I’m like, okay, let’s just finish this up. You know, I didn’t want it to put me behind or nothing.
Bill Gasiamis (14:01)
Yeah. What kind of work were you doing?
Phat (14:03)
You know, I was doing engineering, so I’m an engineer for Boeing.
Bill Gasiamis (14:08)
Yeah, pretty intense job.
Phat (14:11)
Yeah, you know, I do see that, but it wasn’t because of stress. I don’t believe it was. Because I really did have a good, I feel like I did have a good balance of with my stress and also a balance of, you know, play and stuff like that too. And I felt like I was handling it okay.
Bill Gasiamis (14:31)
smoking, drinking, any of that kind of stuff.
Phat (14:34)
You know, before then I was smoking and drinking more, but I wasn’t smoking that much. Before the stroke, I probably had quit about a year before that, but I was smoking before that for about like 10 years, 15 years.
Bill Gasiamis (14:41)
Yeah.
Yeah, again, familiar. I was 37 when I had my bleed the first time and I was also, yeah, yeah, that’s crazy. Like it happens around the same age for so many people I’ve interviewed between the age of 35 and 40 when they’ve had bleeds specifically. I don’t know why. And my, and I was smoking for,
Phat (14:58)
⁓ we’re like the same age.
joke, yeah.
Bill Gasiamis (15:19)
I was 37, so I was smoking from the age of 13 or 14 on and off. Um, I wasn’t drinking heavily, but it was drinking. But again, my thing was, um, something I was born with. was potentially going to bleed at some point. And, um, it’s just one of those things. Uh, but I think that my, uh, my lifestyle didn’t.
Phat (15:36)
all yours.
Bill Gasiamis (15:44)
It didn’t make things better. It sort of created the perfect storm for it to bleed. And that’s why since then I don’t drink and I don’t smoke 100%. You know, like I’ve just completely stopped. I have a drink maybe once a year.
Phat (15:56)
yeah, I’m the same way too, I just…
Yeah, I get you. I was never like a heavy drinker maybe once a weekend, you know, but now I completely stop smoking or drinking. It just doesn’t interest me.
Bill Gasiamis (16:09)
Yeah, what were the early days like?
Were you scared? Was it confusing? How do you deal with the initial diagnosis and your brain’s bleeding?
Phat (16:21)
Yeah, you know, in the beginning, it was a big shock. know, I think looking at me now, you know, you couldn’t tell. But, you know, I’ve built up to this point. But the biggest thing was I had complications when I had the stroke and, know, I had ⁓ my brain was swelling and so they had to do a second surgery on me to remove part of my brain. And so then that’s what left me with the, you know,
disabilities and stuff, which, you know, I had most of the symptoms that most stroke survivors experience, spasticity, aphasia. I had tremors, know, partial paralysis, my balance, vision, things like that. But yeah, it was tough for sure, just coming home and at first you’re just so busy in the hospital working to regain, you know, yourself again, to rebuild yourself. But coming home, yeah, it’s just a…
It hits you because you can’t do anything that you used to do. And everything changes, know, even your relationships change.
Bill Gasiamis (17:22)
Yeah.
Which part of the brain did they take out man? And why did they need to take it out? Was it just a blood vessel that burst or?
Mental Challenges of RecoveryPhat (17:33)
They took part of my cerebellum out and it was because after they repaired, since I had a hemorrhagic stroke, they repaired that vessel. It was, my brain started swelling and there was blood just filling up so then they had to remove part of my brain so they can allow space for it to swell up.
Bill Gasiamis (17:59)
Wow.
Phat (18:00)
Yeah, so I don’t know, you know, they decided to remove part of my brain, but it ended up working out. Actually before that, before they removed the second surgery, I was completely partially paralyzed. But in a way, since that happened, I had some movement.
Bill Gasiamis (18:18)
It’s just crazy, isn’t it? I had a recent brain scan where, because I’ve been having a lot of headaches and to throw caution into the wind, like they went and got me another brain scan literally about six months ago. And it was the first time I saw what my brain looks like after brain surgery. And there’s like a canal.
Phat (18:37)
they do.
Yeah.
Bill Gasiamis (18:47)
like a canal from my ear, that’s all, there’s like an entry wound and then there’s a line that goes in to the spot where they went and removed the blood vessel, like where the damage has caused my deficits, the ones that are still with me. And it’s just intense that you can have a little bit of your brain missing or gone or whatever removed and you’re still functioning. It is just amazing how far technology and how far
Phat (19:04)
Yeah.
Bill Gasiamis (19:17)
Medicine has come.
Phat (19:18)
Yeah, that’s so incredible. The human body too, it makes you think about it. You know, I hear different things about, and just knowing like parts of our brain is dead, you know, and it’s able to, you know, regain different things. Neuroplasticity, right?
Bill Gasiamis (19:36)
Yeah. How long did it take you to get back on your feet after you realized you can’t walk?
Phat (19:42)
It took me about a year, but at that time I was still using a walker.
Yeah, so about a year.
Bill Gasiamis (19:47)
And then from a walker, it
become, how do you take the first steps away from a walker? What happened to allow that progression?
Phat (19:57)
you
You know, I was told to use a cane and it would have helped me big time. But what I did was I skipped the cane and and then I use I just did it without the walker and I slowly built up built up the confidence. You kind of adjust. think each each time you transition like from one one from wheelchair to walker, you know, and then without the walker, you have to.
Re-adapt the whole time and so that’s what I kind of did and it was ugly, know I fell a lot and stuff, but that’s what I did. I just kind of went for it
Bill Gasiamis (20:33)
So for those of you watching on YouTube, you might’ve noticed the change in scenery. That’s because the first part of the interview was recorded more than a week ago. And we had some technical difficulties because fat was in the car and we couldn’t get a decent connection. So we’re reconvening with that fat at home.
Phat (20:55)
Yeah, this is is better better connection
Bill Gasiamis (20:58)
Way better. And we finished the discussion off by me asking you a question about what you had said about how you continued your rehabilitation alone, where you were meant to be walking with the the Walker and you ditched it. And I was wondering, did your team find out that you weren’t walking with a Walker? Did they kind of like suss out that you
We’re being, what’s the word, maybe a little bit risky or unsafe in the way that you were going about your rehab.
Phat (21:34)
Yeah, you know, I didn’t, I kind of, didn’t mention it to them really, but there was one of them that I did mention it to and she recommended I use a cane to be safe. And, you know, I did, I did say, tell her that I was trying it without it because I noticed that when I like switch like from the wheelchair in the beginning to the walker, it just like every time you switch, I noticed that you would have to adjust. so
That’s the reason why I just went from the walker just to walking without a cane.
Bill Gasiamis (22:08)
Is it so that there’s less of an adjustment period between one thing to the next thing to the next thing was a kind of like just bypass everything in between and go straight to walking.
Phat (22:18)
Yeah, it was me being risky too, because I know if you fall or something, it could cause a lot of damage. But yeah, it was kind of my risk and my therapist, she wasn’t too happy about it. But I didn’t talk about it that much either. So I kind of kept it a little private too.
Identity Transformation Post-StrokeBill Gasiamis (22:40)
what would you say some of the toughest challenges that you faced early on?
Phat (22:44)
I would say the toughest for sure is the mental and getting used to my new identity. You you come home and everything’s completely different. It kind of hits you at once. And I think, you know, living a normal life and then all of a you’re, you have a disability and you know, you can’t do the same things, you know, you could do the independence. So I think it’s all that.
Bill Gasiamis (23:14)
Yeah, you know, the mental, what does that mean for you? Like what is the mental challenge? Like, can you describe it?
Phat (23:24)
Yeah, I would say sadness. think anxiousness, fear. You don’t know what’s going to happen in your future. I think the unknown. Low energy. think those are the things that pop up in my head.
Bill Gasiamis (23:45)
Does it make you kind of overthink in a negative way or are you just comparing your old self to your new self?
Phat (23:51)
I think comparing my old self to my new self.
Bill Gasiamis (23:55)
Hmm. Do you reckon, do you reckon you brought some of that old self with you or is there a pause on the old self and why you’re kind of trying to work out what’s happening moving forward? Because a lot of people will talk about how, you know, their identity gets impacted, especially early on. And then sometimes down the track, when I speak to stroke survivors who are many years down the track, they might talk about how
They brought some of their identity with them and then, and they’ve integrated that old identity into the new way they go about their lives. Early on is the old identity kind of far away over there and then there’s something completely different here. How did you experience it?
Phat (24:44)
Yeah, I think initially there were a lot of things and I wasn’t sure how to handle it. But I think throughout this time, you know, part of me has learned how to process it and resolve it and also rebuild myself. And so I think now, if anything, I take that experience to my present day to learn from and grow from. I feel like I’ve invested in myself enough to ⁓
not feel the same way, the negative things that, you know, were coming in the beginning. But now I think I’ve processed it correctly. And so I think I’m a lot better now.
Bill Gasiamis (25:27)
A lot of stroke survivors always often ask me for a timeline, you how long before this happened? How long before that happened? And we’re all so different, so it doesn’t really apply. But do you have a sense of the time that it took for you to integrate old self with new self? ⁓ I know you ⁓ got a substantial amount of your movement and your function back. How did you integrate?
Phat (25:52)
Yeah.
Bill Gasiamis (25:53)
the two and how long did it take before you kind of felt okay with who you were.
Phat (25:57)
Yeah, that’s a that is a hard question to say it wasn’t like Suddenly everything was okay. It was kind of a process I think as you I mean I’m for over four and a half years now and so it was gradual but I would say initially about Two years, you know is when it took me two years to build myself up to when I could finally work again and Maybe about the two-year mark I felt
like things were starting to come more together. But it was an evolution. feel like, you know, every year, every month or whatever, you learn different things. And so it’s kind of a process. Even today, you know, I’m still learning different things and, you know, it’s changing too in different ways, right? But that’s how was for me.
Bill Gasiamis (26:48)
Yeah.
What kind of person are you? Are you like curious? Are you a problem solver? I’m very interested about kind of understanding how people come to be on my podcast. I know that there’s a portion of people who come on because they want to share their story and help connect to other people. Also share their story to help people through the early days of their own challenge. People also connect to meet me so that we can create a conversation and meet each other.
Phat (26:55)
You know.
Yeah.
Bill Gasiamis (27:19)
How do you go about your, what is your approach to stroke recovery about? What’s the fundamental thing that it’s about?
Phat (27:29)
Yeah, you know, that’s what I love about your podcast because it’s people from all walks of life. And I really like how you set it up. I mean, you say you don’t have to even prepare for it, but I think I’m the type of person. Yeah, I think I am ⁓ naturally a problem solver. think, know, in initially someone asked me if I cried and normally I, I don’t cry. And I remember when I had the stroke, once I got home,
You know, I suddenly broke out in tears and you know, it was with my mom right there. And so it just hit me. know, initially I think, you know, we all get hit with that and our emotions and, you know, everything bottles up and has to come out or should come out. But, um, you know, I am a problem solver. I felt like after time, it gave me some time to process it. And I started thinking a bit like, okay, so how am I going to tackle this?
So I tried to think of it like a problem that I had to solve and I slowly broke it down into pieces and started building myself up. know, I mean, when you look at me now, you you wouldn’t look at me and think like, okay, his stroke probably wasn’t that bad. But you know, it’s a lot different now than it was in the beginning. And so, you know, and that’s why with me, I figured it out. I started figuring out things and slowly improved until where I’m at now.
Bill Gasiamis (28:53)
That whole thing is that if you look at me now, you wouldn’t know that I had a stroke and I don’t come across as somebody who had a stroke, et cetera. And that’s a real challenge for me because I have had the worst week leading up to this interview again. Today’s probably the first day I felt really good, maybe for about four or five days. And I was struggling with fatigue and I was struggling with brain fog and I was struggling with sleep. And I was just a mess.
Phat (29:04)
Yeah.
Bill Gasiamis (29:23)
half the person that I was a week earlier.
And it’s.
I’m always conscious about the fact that I put off of this vibe on my podcast interviews, because I try and be the best version of myself, because you need to be the best version of yourself when you’re interviewing another person, even if you don’t feel the best. ⁓ But at the same time, you want to be, what’s the word like?
Phat (29:38)
That’s so good, yeah.
Bill Gasiamis (29:45)
you wanna be authentic. I mean, that’s the only word I can come up with. And that means that I need to tell people about how I’m feeling during a podcast. Like I might be tired, half asleep. I might even come across a little bit off, but then still, this is sometimes what stroke looks like and the part of stroke.
After the interviews, you may not see, you may not see what it’s like. And I don’t want people comparing themselves to me just because I mostly look okay on a podcast interview.
Phat (30:21)
Yeah, I think that’s the frustrating thing. no matter whether you look like it or don’t, I think we still both experience different types of things in After Effects. And I understand your situation because it is frustrating because a lot of times we might not show it, but we’re still dealing with things that survivors still experience.
Mindset Shifts and ControlAnd, you know, we in front of the camera, we had to put on a face, right. And even sometimes like at work or in front of my family, they don’t realize I’m still dealing with things. And, you know, even my significant others, there’s things she doesn’t fully understand, and I’m still dealing with it. You know, or I might do something and she’s like, why are you doing that? But she doesn’t realize what I’m going through inside. And the external is one thing and the internal is another.
Bill Gasiamis (31:12)
Yeah, extremely difficult for me to even wrap my head around it still. And, you know, I’m nearly 14 years post first stroke, you know, and I’m 12 years post surgery and there’s so many things that have improved and so many things that are better. But you know, when I’m, my kids were over the other day and they don’t often hang around with me for a long amount of time. So they don’t often see what it’s like for me.
Phat (31:23)
Yeah.
Bill Gasiamis (31:41)
But everyone assumes that I am what’s wrong. Like everyone assumes there’s something wrong. And it’s like, I’m not cranky. There’s nothing wrong. I’m just having a stroke day. Like I can’t be better than what I am right now. And it’s not you, you know, it’s me.
Phat (31:58)
Yeah, big time. Yeah, I really feel like sometimes it’s hard for people to understand too if they haven’t had a stroke, but even for survivors to know that even people with, there are invisible disabilities out there, know, and each stroke is so complex and different. So we’re all, you know, having to deal with different things. And so that’s something to be aware of. And it’s good to be aware of that.
Bill Gasiamis (32:25)
What are some of the things that you still miss out on that you haven’t gone back to or you can’t do anymore or you choose not to do?
Phat (32:36)
Yeah, you know, I used to be a lot more active. I like, I love to snowboard before I can’t do that anymore because my balance is not at that point. And, plus I don’t want to take that risk in case something happens. Like, you know, I get some kind of traumatic brain injury or something or fall. ⁓
You know, my coordination, my fine manipulation isn’t good. My memory isn’t the best. I still have double vision, so I can’t do any type of like, like people are trying to invite me to play pickleball and I definitely can’t do that. You know, I can’t fall and track the ball, you know, plus my balance is horrible. Yeah. You know, I think my processing, I can only retain so much information or like
Multitasking even though I think I believe multitasking isn’t the best but it’s like I can’t multitask, know, so you have to really focus in on one thing You know, I mean I built myself up to this point But it’s hard to do multiple things like if I’m really focused on something it’s hard for me to pay attention to something else Yeah, those are just some things
Bill Gasiamis (33:52)
You know with double vision, I don’t know anything about it. I’ve met so many stroke survivors who have double vision as a result of the stroke.
Phat (34:00)
Yeah.
Bill Gasiamis (34:01)
This might sound like a silly question. If you close one of your eyes, does the double vision go away?
Phat (34:08)
It does go away. So just to explain, it’s just your eyes aren’t… normally your eyes work together, but then one is kind of offset a little bit. So you’re seeing two pictures, but if you close one eye, then the double vision goes away. But in order for you to improve the double vision, you got to train it to work together.
Bill Gasiamis (34:23)
Okay.
Is that some kind of training that you’ve done that you’re continuing to do?
Phat (34:30)
So there’s. ⁓
Yeah, know what I did initially, I saw a vision therapist that I was seeing them for about a year, but it got really expensive. So I stopped. But now I’m just taking what I learned and I’m practicing it on my own. There is an option for people to get surgery, but I am focused on just doing everything naturally. And so it’s still healing as long as I continue to practice it and exercises stay consistent.
But just recently, since I’m doing a lot of things, I haven’t been as good at being consistent with my vision therapy exercises, so it’s actually getting worse.
Bill Gasiamis (35:14)
huh. So what does the surgery do? Does it change the position of the eye?
Phat (35:16)
Yeah.
Yeah, the surgery does change the position and then it corrects it right away. Which there’s a lot of survivors that have done that. My double vision actually was really extreme, but it’s at the point now where it’s almost corrected.
Bill Gasiamis (35:40)
And is that a muscle issue? that like, you know how some strike survivors talk about weakness on their left side? It’s that the muscle activates or becomes deactivated in a particular way. And therefore it doesn’t respond in the same way that it used to. It doesn’t contract and release from the contraction in the same way that it used to. Is that a similar thing that’s happening to the eye?
Breath Control Techniques for Stress ReliefPhat (36:09)
Yeah, it is kind of similar to that. And so what I’ve learned from talking to different therapists, it helps when you like isolate one side and you build that side and strengthen it. And so that’s the part where I’m missing because I’m working them together, but still the affected side is weaker. And so it’s just not strong enough to keep up. It’s kind of like our bodies, like, you know how one side is more affected. So we
is good for us to isolate it and build it and that’s what I try to do with my effective side normally but with the eye it’s more difficult with the eye because you really have to like wear a patch or something you know
Bill Gasiamis (36:50)
Yeah, I hear you. Okay, so you wear a patch, you isolate the other eye, but then at the same time, you’re decreasing the strength of the other eye, or you might be interfering with that one by isolating it.
Phat (37:02)
Yeah, you’re right.
Yeah, that’s exactly it. So you don’t want to patch it too much because you also want the eyes to work together.
Bill Gasiamis (37:09)
Yeah, that sounds like a task. I know going to the gym when I’m ⁓ pushing weights with the barbell, my left side might be pushing the same amount of weight, but it’s never going to become as big or as strong as my right side. It always seems to be just, you know, the few steps behind it, no matter what I do.
it’s improving in strength, but it’s always the weakest link. It’s always the link that kind of makes the last few exercises not possible because it fatigues quicker than the right side.
Phat (37:43)
Yeah.
Yeah, that’s what I deal with too. And a lot of times your dominant side does help it out a lot.
Bill Gasiamis (37:58)
kind of dominant side, my dominant side kind of over helps. And then it puts that side at risk.
Phat (37:58)
So yeah, sometimes.
Yeah, it will help.
Yeah, big time. You know, I’ve learned that there’s different ways to do it. You can build that affected side like with reps and then also sometimes doing a little bit heavier just a few times. I don’t know. I feel like it gets really in depth like how you want to do it. You know, sometimes even like holding a lightweight like up for a long time, it kind of gets heavy and it wants to like fatigue out real fast.
So there’s different variations that I’ve learned throughout this process.
Bill Gasiamis (38:40)
Yeah. Was there a moment, would you say that you had a moment where your mindset shifted and you realized that you were kind of growing through this, even though you had all this challenge and difficulty that you had to overcome?
Phat (38:58)
Yeah, you know, I have to really think about it. It’s kind of just been a process and I’ve kind of accepted so much to happen, but I would say for the longest time over a year, you know, I would go down on myself and think about, ⁓ I miss the old ways. But I think as I’ve continued on this path and
Maybe I don’t think about it as much because I keep myself busy and just trying to recover. so, yeah, but I think I’m trying to think of when it was like kind of like a light bulb moment, but I kind of knew that I couldn’t stay stuck in that because I couldn’t change anything about it. So I had to focus on what I could do or what I had control over.
Bill Gasiamis (39:52)
Yeah, that control part is really important. It seems like people who lose control of things ⁓ tend to, depends if you’re a control freak kind of person, right? Some people really like the illusion of control. They tend to feel good when things are predictable.
I’m kind of that way, I lose, if I lose predictability, take control. I like to take a few steps back and see what I can control. can control the way I think about things, the way I respond to things, the way I act, the way I behave. It becomes about what then I can control on a micro scale. Whereas some people will do control on a macro scale. And some people will control like,
Phat (40:16)
Yeah.
Mm-hmm.
Bill Gasiamis (40:44)
their environment and if their environment is okay, then they’re okay within their environment. But I don’t try and control external things. I try to influence them in a positive way, but I won’t expect an outcome from something that I don’t have any influence over. ⁓ And then I kind of try and work on what do I need to do to feel better about that thing that I am out of control of that I cannot change.
but I can change how I respond to it. That’s kind of where all the work has been. Like where’s the work for you been?
Phat (41:21)
Yeah, you know, I do know that I do practice meditation and even before I had a stroke, I did practice meditation and that is one of the big things from meditation that you just naturally have that mindset to do that and to understand. And so I feel like that practice has actually helped me to be more flexible and accept certain things and focus on what I can control more.
But just to say with the benefits of meditation, a lot of the benefits are specifically for stroke survivors. So I feel like it has helped me tremendously.
Managing Tremors and Physical RecoveryBill Gasiamis (42:04)
Did it begin, was that kind of one of the tools that helped you to begin to feel hopeful again?
Phat (42:10)
Yeah, to feel hopeful, to be able to focus better, have better memory, I guess reduce the pain that I was feeling, the depression. Yeah, there’s a list of things, yeah, think that’s, those are the ones off the top of my head. Yeah, I know it’s like.
Bill Gasiamis (42:32)
Are you a guided meditation?
Phat (42:35)
You know, I don’t, I just do ⁓ the most simple breath counting meditation. Yeah. It’s kind of, I can explain it, but you just focus on your breathing and counting. So it helps you with your focus too. don’t know. A lot of survivors have a problem with their focus. I did. So, and I still do actually now it’s not like to where I was before the stroke, but it’s getting almost there.
Bill Gasiamis (42:45)
What’s your kid?
Counting how many counts in, how many counts out do you do?
Phat (43:10)
So you do inhale and exhale is one, inhale, exhale two, all the way till ten, and then you start over again. If that makes sense, yeah.
Bill Gasiamis (43:23)
So you just basically trying to get even inhale and exhalations. Are they even? they one is longer than the other or shorter than the other? Like how does it go?
Phat (43:36)
You can do even. I tend to do a longer exhale. Maybe like a, well, cause now I’ve built up the endurance. do about five second in inhale and then like a eight second exhale. But I also put together a PDF. I can send it to anybody for free if they want to just reach out to me. Yeah.
And I can, you can put my information on the show notes. Yeah. It’s a really basic thing I put together if anyone’s interested. And Navy SEALs, use this type of, I mean, it’s also called box breathing. It’s kind of box breathing or meditation. And, you know, I know they use it for like extreme stress and things like that too.
Bill Gasiamis (43:59)
Okay, cool.
helps people calm their autonomic nervous system to go into a parasympathetic state, which is the relaxed state. That’s what the, yeah, the longer exhalation helps people go there. You can basically intervene in a ⁓ heightened anxious state or a stressed state or a upset state. And you can intervene within a few minutes and bring yourself into a calm state just by changing the way that you breathe. You know what’s really cool fat?
Phat (44:29)
That’s exactly it, yeah.
Bill Gasiamis (44:53)
my gosh, I learned this the other day on TikTok. think I saw it. I can’t remember who it was that showed it to me. So unfortunately I can’t credit them, but also people who do yoga or that kind of stuff probably already know this, but to me it was like the most brand new amazing thing that I’ve ever learned. And what it was, if you can see my fingers, right? They said that if you try this, if you press ⁓ your thumb onto the finger after
Phat (44:54)
Yeah.
and
Bill Gasiamis (45:22)
your
little finger, I don’t know what it’s called, finger. So these two, so not your thumb, your thumb and not the little finger, the next one over.
When you breathe, what do you notice? And what I noticed, tell me if you noticed this, is I noticed that my breathing shifts from my belly to my chest.
somehow my chest takes over the breathing. Somehow my breath moves to my chest and it feels like a labored more anxious breath, right? And then if you shift it from that to your thumb and your first finger,
Phat (45:43)
But, sorry, just need to focus.
Thank
Bill Gasiamis (46:06)
your breath automatically shifts to the belly and your diaphragm expands and contracts. And I tried that and I had the most profound experience. The first finger, your first finger and your thumb, two fingers next to them.
Phat (46:16)
really?
on.
Bill Gasiamis (46:26)
Yeah, those two, yeah, yeah. ⁓ I felt like my breath shifted automatically on its own when I did that. And I don’t know if everyone gets that experience. So then for fun, I tried it with my wife and I said to her, can you please do this with your fingers? The first one was the little finger. I wish I knew what they were called, but the finger next to the little finger and the thumb.
Phat (46:26)
this.
really?
Bill Gasiamis (46:54)
I asked her to do that and I asked her to tell me how does that feel when you’re breathing and she said that feels really terrible, I feel anxious. And I said, okay, cool. Now just please change it to the other two fingers, the first finger and your thumb and then see what that feels like. And she said that feels far better and the anxiousness has gone away.
Phat (47:17)
Really? Wow.
Bill Gasiamis (47:18)
Yeah.
So I reckon if you have a play with that and you pay attention, I think I’ve seen a lot of yogis or people who practice yoga or who meditate, think I’ve seen people hold their fingers like that. And as a result of that, perhaps they automatically instinctively activate the diaphragm and the belly breath instead of the chest breath, which is the more anxious breath. It was such an interesting
little hack to experience literally by changing which two fingers you’re pressing together. And it kind of connects to that meditation side of it. And I think it would add for me, it would add something extra to meditation that I previously didn’t know about. So isn’t that fascinating?
Growing an Online Presence and Sharing StoriesPhat (48:09)
Yeah, that is so fascinating. I actually don’t even normally sit like that. I just put my hands in my lap. But I did. If you notice, I still have tremors on this side, and that’s how I actually got my tremors to reduce is I would hold it like this sometimes and just meditate. And then it’s just like heels or something. But yeah, before it used to shake a lot. Now it’s a lot better.
Bill Gasiamis (48:17)
Yeah.
Yeah.
Mm-hmm.
Yeah. So do the meditation from now on.
Phat (48:39)
but sometimes just doing these
finger taps.
Bill Gasiamis (48:42)
Yeah, right. That’s for coordination and that, right.
Phat (48:44)
Okay,
you might try that. Yeah, yeah. Also you do use the pointer finger and the thumb.
Bill Gasiamis (48:47)
Yeah, try those first two fingers. Make a circle with it.
That’s it, is that what it’s called, the pointer finger?
Phat (48:55)
Okay
Bill Gasiamis (48:57)
just connects to your belly.
Phat (48:59)
I’m off to the end.
Bill Gasiamis (49:01)
I have no idea how, but I love it. love that it does. It’s such a cool thing.
Phat (49:05)
Yeah, especially
you feel that I’m gonna try it. Yeah
Bill Gasiamis (49:10)
So you know that tremor that you said about your hand, is that also in your leg?
Phat (49:15)
No, it’s only the hand.
Bill Gasiamis (49:17)
and it it gets worse when you are tired, I imagine.
Phat (49:19)
Yeah.
Yeah, it does get worse under like pressure or if I’m tired. Yeah.
Bill Gasiamis (49:32)
but you’ve found that it’s settled down a lot since the early days.
Phat (49:37)
Yeah, it has. So as I continue to build it, it has.
Yeah, in the beginning it was really bad, but I continued to do different things. A lot of resistance training, like with rubber bands and stuff like that, yeah. I do different things.
Bill Gasiamis (49:58)
Do you remember what it was like in the early days? Is that the dominant hand that you use or?
Phat (50:05)
No, it’s not my dominant hand.
Bill Gasiamis (50:08)
Did they make you try and use it too? Okay.
Phat (50:09)
because I’m bright, dumb, and…
Yeah, they said they want me to use it. Sometimes I do get lazy too. I try different things, like even for a time frame I’ll brush my teeth with my effective side, my non-dominant. But a lot of times I get lazy because it is a lot slower. So I just go to my dominant hand. I’m still guilty of it.
Bill Gasiamis (50:39)
just to get the job done quicker.
Phat (50:41)
Yeah, yeah.
Bill Gasiamis (50:42)
Tell me a little bit about your, ⁓ your Instagram page.
Phat (50:49)
Okay. Well, I started an Instagram page. It’s called Hope for Stroke Survivors. And initially, I just made it for myself to collect information on recovery. Because I felt like I was limited on the information out there. And I would find some stuff on social media. And so I started collecting it for myself and
know, eventually I made it public and I started, people started following it and gravitating towards it. And so I decided to start sharing different like tips. And then I continued to do that and more people started following it until I think that was around a year after my stroke. And now I just continue to do that and it’s grown to this point now. And so
I felt like a part of it was kind of my outlet. You know, you know, I’m passionate about strokes and I want to share and provide awareness. so, yeah, I started for myself, but now it’s grown to where it’s at now. And I feel like, you know, it’s, I want to provide hope and also share different people’s stories because I really enjoy, and I still enjoy seeing comeback stories. And so, you know, that’s what happened with that. And so now it’s been about, what is it?
for four years or something. Yeah.
Bill Gasiamis (52:19)
Hope for stroke survivors like 11.6K followers.
Phat (52:23)
Yes, call them.
I’m sorry, what was that?
Bill Gasiamis (52:26)
It’s got 11.6K followers, 929 posts, and in the description it says, don’t fear change, trust the process. My goal is to spread hope while recovering from a severe stroke. Check out the stories from fellow stroke survivors too.
Phat (52:45)
Yeah, you know, after a while, I felt like, ⁓ I want to share survivor stories. feel like bring our community together. There’s a lot of survivors out there that are doing great things like yourself. You know, I found your stuff. And so, you know, I feel like it really gives a lot of us, you know, motivation, hope to believe what’s possible out there, because a lot of us have.
you know, we get the wrong information, you know, I want to be able to show people what’s possible because a lot of times, you know, there’s like myths or whatever, and I just want to give people that hope. So I’ve expanded it to YouTube and also TikTok. And so, yeah, it’s grown tremendously on YouTube also. So it’s pretty cool.
Bill Gasiamis (53:33)
now.
What kind of content you put out on YouTube?
Phat (53:37)
I, the same stuff, I pretty much just blast the same thing on. Well, now I’m starting to do more, I want to do more interviews, but recently I have kind of cut back on it because of time, but I want to do more interviews for like survivors and therapists and doctors on YouTube. I think that’s where I want to take it.
Bill Gasiamis (54:00)
Yeah.
Yeah. To kind of share more information about the kind of ways that they help other people.
Phat (54:08)
Yeah, it’s exactly like, you know, what you’re doing. I think that’s amazing. I mean, you helped me out so much. remember yours is actually my top podcast and I would listen to it all the time.
Bill Gasiamis (54:13)
Yeah. Yeah.
Yeah, I really appreciate that. mean, you know what I love is that you’ve been doing this for four years. I’ve been doing this for 10. Somehow you’ve cracked the code. You’ve got 36.8k subscribers. I’ve barely got 8,000. So that’s very interesting to me. Like how that some channels that share pretty much the same type of content grow. And then mine has been going for 10 years and I can’t seem to get above 10,000 subscribers. What’s your trick? know, like how did you manage to get that many subscribers?
Is there something that you do consistently? I’m also asking for me, but at the same time, there’ll be other stroke survivors who are thinking about starting a YouTube channel perhaps, or thinking about sharing some way or growing this type of a community. And they’re reluctant because they don’t know what they need to do and they don’t know what could happen. Now I’m not completely dissatisfied with 8,000 followers. I’m perfectly satisfied with that.
But of course I wanna make sure I reach way more stroke survivors because that’s the whole point of this is to get out. Do you have any tips as to what it was that kind of helped the channel grow so fast?
Phat (55:25)
Yeah, yeah.
Yeah, you know, I think a big one is consistency. You know that. But, you know, I have learned a lot of things. read a lot and a part of it is also. Initially, I would share other survivors stories and also it was ⁓ like even survivors in who have had like cancer or different types of sicknesses.
And so initially I was just doing that for fun. so then I think it attracted more people because it was a variety of things. But then, you know, I know that I didn’t plan to do it. if it’s. If I was going to do that, I don’t want to share other people’s things, you know, like if I want to be more serious, I have to niche down or I got to share my own stuff because I don’t want to take stuff from people. But initially.
I was sharing a bunch of stuff and not wanting, I wasn’t expecting it to grow like that and I was just doing it for my own reason, for my own purpose and I think that’s how it attracted so many people too.
Bill Gasiamis (56:46)
Yeah. Look, it’s, it’s very cool that, um, the people have subscribed. Absolutely. And what’s good about it, even though it’s not all your content, it doesn’t really matter because if you’re putting content out there that people, uh, I mean, you’re not stealing the content, you’re not changing the names or anything like that or repurposing it. All you’re doing is, um, uh, all you’re doing is kind of pointing people to the direction of somebody else’s content channel or whatever. you know what I mean?
Phat (56:58)
Yeah.
Bill Gasiamis (57:17)
⁓ but I know what you’re saying.
Phat (57:18)
Yeah, yeah.
mean, I would always put their contact or their credit. But that wasn’t my intent of doing it. And I’m not making any money off of it. But then I’m learning about, OK, what can I do to make this bigger and help more people? And now I’m trying to focus down or just come up with my own content so that way people can see that too.
Bill Gasiamis (57:31)
Yeah, yeah.
Yeah. ⁓ I think there’s not enough voices in stroke recovery and awareness and support and why, you know, we need more. need every version of person, how they’re affected and different cultural backgrounds and that we need way more people kind of putting content out and sharing their version of the story. My story resonates with you, but it might not resonate with someone else, you know? So if, if we can have more people out there listening, who are curious about it.
Phat (57:53)
Yeah.
You’re right, you’re right.
Bill Gasiamis (58:17)
⁓ biting the bullet and doing it.
It would be fantastic if that happened and then more people to collaborate with.
Phat (58:21)
You know, I think it’s
Yeah, I think it’s easy to pay attention to the subscribers or the followers, but a lot of times too, the way how I did it is if it can just help one person, you know, that makes me happy and then it just grew like that. But that’s what I continue to do. You know, I mean, maybe there’s more subscribers.
but maybe your content is connecting really deeply with more people, you know? So I feel like it can’t always be compared exactly to the followers. And if you’re a survivor, you know, I wouldn’t want to let you feel like demotivated because of that. you know, I think if you’re passionate about it, just do it. you know, I think there’s plenty of room for a bunch of people, right? Like you were saying.
Bill Gasiamis (59:15)
I what you said, like if you’re just passionate, just do it. That’s why I started, I didn’t start out to get a certain number of subscribers or anything like that. I just started out to share. What’s cool is that the subscribers have happened. What’s fascinating is to view like how other people have grown their channel. what, it’s a completely different version of what you’ve done and yours has grown and I’m just keen to learn about it. And I think it will encourage or help other people, you know, do the same thing.
Phat (59:24)
Yeah.
Bill Gasiamis (59:45)
⁓ And that’s kind of why I raised it. What I love about what you said is if it helps one person, like I said the same thing, dude, it helps so many more than one person. You just don’t know it because very few people reach out. Not that you’re expecting them to, but people just get the help and then they move on and they go and do good stuff. And it’s like, even better.
⁓ But every so often I get people like you sending me messages going Thanks for that episode. That was a great interview. I really got a lot out of that Can you point me in this direction or can you connect me with that person? One of the things that I do best I think then better than anything is I can connect people from all around the world with people who Are ⁓ listening and they want to get information about the thing that you tried or that service that you
⁓ purchased or whatever, you that’s what I love about it the most is I can connect people and they could be on different continents. And I love that I can do that from Australia, you know, like it’s crazy.
Understanding Stroke RecoveryPhat (1:00:58)
Yeah
Yeah. And especially, yeah, it has affected me too. You know, like I wouldn’t, I wouldn’t be standing here like this if I didn’t hear your podcast. You know, I could literally say that, you know, so that’s pretty cool. Yeah. And you’re in Australia. I’m in Arizona.
Bill Gasiamis (1:01:17)
It’s fabulous, man. It’s so fascinating. That’s one of the things I love about technology is that with time, technology will improve and make things better for people. And hopefully it’ll help way more people than it’s helping at the moment. It’s definitely helped me with my mental health, having this podcast, this platform, because I can speak to, know, you know, 380 plus interviews now. like all those conversations have helped me ⁓ in my recovery and
Phat (1:01:35)
Yeah, that too, yeah.
Bill Gasiamis (1:01:47)
and that you just can’t buy that. If I had to sit there with counsel over 380 times, that’s just not doable. I cannot afford that. can’t find the resources to have 380 conversations with a counselor who doesn’t really get me still.
Phat (1:02:00)
Yeah.
That’s amazing, Bill. Yeah, you know, I don’t know. I’m passionate about it. I’m sure you are too. And I can be tired, but as soon as I do this, I can do it all day. I don’t care if I don’t get paid or nothing. It’s just, you know, I went through it and I want other people to, you know, be helped too.
Bill Gasiamis (1:02:28)
Does it contribute to meaning, life meaning and purpose for you? Because it does for me plenty.
Phat (1:02:36)
Yeah, big time. And I see so many advocates in the community that I respect so much too. you know, I think now that Hope for Stroke Survivors has grown to this point, I want it to be, to bring everyone together too. think that that’d be awesome, you know.
Bill Gasiamis (1:02:55)
Yeah, that would be great. As we wrap up, man, I’m just wondering, people are listening, they’ve listened for the first time, they’ve just landed on our podcast, maybe they don’t know anything about me or you, but what would you pass on, like, a little bit of wisdom to somebody who’s just starting their recovery now?
Phat (1:03:13)
What I would say is that you’re not alone. You know, and there’s a community of survivors who have gone through it. I think, you know, just take it one step at a time and just know that you can lean on this community of people to help you.
uplift you. know, I think a lot of people around us aren’t going to understand exactly what we’re going through. And so just remember that you’re not alone in this journey. And it’s possible.
Bill Gasiamis (1:03:49)
And on that note, thank you so much for joining me on the podcast. really appreciate it.
Phat (1:03:53)
All right, Bill, thank
you so much. Yeah. Thank you for your time,
Bill Gasiamis (1:03:58)
Before you go, I want to leave you with this. If you heard something in this episode that helped you put words to your own experience, you’re not imagining it and you’re not alone. Stroke recovery isn’t linear. Symptoms aren’t always obvious and healing doesn’t stop just because you look fine. If this episode resonated with you, share it with someone who might need it. Leave a comment on YouTube if you’re watching or send it to a survivor who’s early in their recovery.
And if you want more support, my book is at recoveryafterstroke.com slash book. And to support the podcast, help keep the lights on, go to patreon.com slash recovery after stroke.
Links for everything mentioned including turn2.ai are in the show notes.
Thank you for being here and listening. I’ll see you on the next episode.
The post Heard a Pop in My Head: A Stroke Survivor’s Warning You Shouldn’t Ignore appeared first on Recovery After Stroke.
Moyamoya Syndrome Stroke Recovery: Judy Kim Cage’s Comeback From “Puff of Smoke” to PurposeAt 4:00 AM, Judy Kim Cage woke up in pain so extreme that she was screaming, though she doesn’t remember the scream. What she does remember is the “worst headache ever,” nausea, numbness, and then the terrifying truth: her left side was shutting down.
Here’s the part that makes her story hit even harder: Judy already lived with Moyamoya syndrome and had undergone brain surgeries years earlier. She genuinely believed she was “cured.” So when her stroke began, her brain fought the reality with everything it had. Denial, resistance, bargaining, and delay.
And yet, Judy’s story isn’t about doom. It’s about what Moyamoya syndrome stroke recovery can look like when you keep going, especially when recovery becomes less about “getting back to normal” and more about building a new, honest, meaningful life.
What Is Moyamoya Syndrome (And Why It’s Called “Puff of Smoke”)Moyamoya is a rare cerebrovascular disorder where the internal carotid arteries progressively narrow, reducing blood flow to the brain. The brain tries to compensate by creating fragile collateral vessels, thin-walled backups that can look like a “puff of smoke” on imaging.
Those collateral vessels can become a risk. In Judy’s case, the combination of her history, symptoms, and eventual deficits marked a devastating event that would reshape her life.
The emotional gut punch wasn’t only the stroke itself. It was the psychological whiplash of thinking you’re safe… and discovering you’re not.
The First Enemy in Moyamoya Stroke Recovery: DenialJudy didn’t just resist the hospital. She resisted the idea that this was happening at all.
She’d been through countless ER visits in the past, having to explain Moyamoya to doctors, enduring tests, and then being told, “There’s nothing we can do.” That history trained her to expect frustration and disappointment, not urgent help.
So when her husband wanted to call emergency services, her reaction wasn’t logical, it was emotional. It was the reflex of someone who’d been through too much.
Denial isn’t weakness. It’s protection. It’s your mind trying to buy time when the truth is too big to hold all at once.
The Moment Reality Landed: “I Thought I Picked Up My Foot”In early recovery, Judy was convinced she could do what she used to do. Get up. Walk. Go to the bathroom. Handle it.
But a powerful moment in rehab shifted everything: she was placed into an exoskeleton and realized her brain and body weren’t speaking the same language.
She believed she lifted her foot, then saw it hadn’t moved for several seconds.
That’s when she finally had to admit what so many survivors eventually face:
Recovery begins the moment you stop arguing with reality.
Not because you “give up,” but because you stop wasting energy fighting what is and start investing energy into what can be.
The Invisible Battle: Cognitive Fatigue and Energy ManagementIf you’re living through Moyamoya syndrome stroke recovery, it’s easy for everyone (including you) to focus on the visible stuff: walking, arms, vision, and balance.
But Judy’s most persistent challenge wasn’t always visible.
It was cognitive fatigue, the kind that makes simple tasks feel impossible.
Even something as ordinary as cleaning up an email inbox can become draining because it requires micro-decisions: categorize, prioritize, analyze, remember context, avoid mistakes.
And then there’s the emotional layer: when you’re a perfectionist, errors feel personal.
Judy described how fatigue increases mistakes, not because she doesn’t care, but because the brain’s bandwidth runs out. That’s a brutal adjustment when your identity has always been built on competence.
A practical shift that helped her
Instead of trying to “finish” exhausting tasks in one heroic sprint, Judy learned to do small daily pieces. It’s not glamorous, but it reduces cognitive load and protects energy.
In other words: consistency beats intensity.
Returning to Work After a Moyamoya Stroke: A Different Kind of StrengthJudy’s drive didn’t disappear after her stroke. If anything, it became part of the recovery engine.
She returned slowly, first restricted to a tiny number of hours. Even that was hard. But over time, she climbed back. She eventually returned full-time and later earned a promotion.
That matters for one reason: it proves recovery doesn’t have one shape.
For some people, recovery is walking again.
For others, it’s parenting again.
For others, it’s working again without losing themselves to burnout.
The goal isn’t to recreate the old life perfectly. The goal is to build a life that fits who you are now.
“If you couldn’t make fun of it… it would be easier to fall into a pit of despair.”
Humor Isn’t Denial. It’s a Tool.Judy doesn’t pretend everything is okay. She’s not selling toxic positivity.
But she does use humor like a lever, something that lifts the emotional weight just enough to keep moving.
She called her recovering left hand her “evil twin,” high-fived it when it improved, and looked for small “silver linings” not because the stroke was good, but because despair is dangerous.
Laughter can’t fix Moyamoya.
But it can change what happens inside your nervous system: tension, stress response, mood, motivation, and your willingness to try again tomorrow.
And sometimes, tomorrow is the whole win.
Identity After Stroke: When “Big Stuff Became Small Stuff”One of the most profound shifts Judy described was this: the stroke changed her scale.
Things that used to feel huge became small. Every day annoyances lost their power. It took something truly significant to rattle her.
That’s not magical thinking. That’s a perspective earned the hard way.
Many survivors quietly report this experience: once you’ve faced mortality and rebuilt your life from rubble, you stop wasting precious energy on what doesn’t matter.
Judy also found meaning in mentoring others because recovering alone can feel like walking through darkness without a map.
Helping others doesn’t erase what happened.
But it can transform pain into purpose.
If You’re In Moyamoya Syndrome Stroke Recovery, Read ThisIf your recovery feels messy… if you’re exhausted by invisible symptoms… if the old “high achiever” version of you is fighting the new reality…
You’re not broken.
You’re adapting.
And your next step doesn’t have to be dramatic. It just has to be honest and repeatable:
- Simplify the day
- Protect energy
- Build routines
- Accept help
- Use humor when you can
- And find one person who understands
Recovery is not a straight line.
But it is possible to rebuild a life you actually want to live.
If you want more support and guidance, you can also explore Bill’s resources here:
- recoveryafterstroke.com/book
- patreon.com/recoveryafterstroke
This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
Judy Kim Cage on Moyamoya Stroke Recovery, Cognitive Fatigue, and Finding Purpose AgainShe thought Moyamoya was “fixed.” Then a 4 AM headache proved otherwise. Judy’s comeback will change how you see recovery.
Judy’s Instagram
Highlights:
00:00 Introduction and Guest Introduction
01:43 Life Before the Stroke
11:17 The Moment of the Stroke
19:56 Moyamoya Syndrome Stroke Recovery
25:36 Cognitive Fatigue and Executive Functioning
34:50 Rehabilitation Experience
42:29 Using Humor in Recovery
46:59 Finding Purpose After Stroke
54:19 Judy’s Book: Super Survivor
01:05:20 Conclusion and Final Thoughts
Transcript:
Introduction and Guest Introduction
Bill Gasiamis (00:00)
Hey there, I’m Bill Gasiamis and this is the Recovery After Stroke podcast. Before we jump in a quick thank you to my Patreon supporters. You help cover the hosting costs after more than 10 years of doing this independently. And you make it possible for me to keep creating episodes for stroke survivors who need hope and real guidance. And thank you to everyone who supports the show in the everyday ways too. The YouTube commenters, the people leaving reviews on Spotify and Apple.
The folks who bought my book and everyone who sticks around and doesn’t skip the ads. I see you and I appreciate you. Now I want you to hear this. My guest today, Judy Kim Cage, woke up at 4am with the worst headache of her life and she was so deep in denial that she threatened to divorce her husband if he called 911. Judy lives with Moyamoya syndrome, a rare cerebrovascular condition often described as the puff of smoke on imaging.
She’d already had brain surgeries and believed she was cured until the stroke changed everything. Judy also wrote a book called Super Survivor and it’s all about how denial, resistance and persistence can lead to success and a better life after stroke. I’ll put the links in the show notes. In this conversation, we talk about Moyamoya Syndrome, stroke recovery, the rehab moment where reality finally landed.
and what it’s like to rebuild life with cognitive fatigue and executive functioning challenges and how Judy used humor and purpose to keep moving forward without pretending recovery is easy. Let’s get into it. Judy Kim Cage, welcome to the podcast.
Life Before Moyamoya SyndromeJudy Kim Cage (01:43)
Thank you so much, Bill
Bill Gasiamis (01:45)
Thanks for being here. Can you paint us a picture of your life before the stroke? What were your days like?
Judy Kim Cage (01:51)
Hmm. Well, my life before the stroke was me trying to be a high achiever and a corporate nerd. I think so. I think so. I, you know, I was in the Future Business Leaders of America in high school and then carried that forward to an accounting degree.
Bill Gasiamis (02:04)
Did you achieve it?
Judy Kim Cage (02:20)
and finance and then ⁓ had gone to work for Deloitte and the big four. ⁓ And after that moved into ⁓ internal audit for commercial mortgage and then risk and banking and it all rolled into compliance, which is a kind of larger chunk there. But ⁓ yeah, I was living the corporate dream and
Traveling every other week, basically so 50 % of the time, flying to Columbus, staying there, and then flying back home for the weekend and working in a rented office for the week after. And I did that for all of 2018. And then in 2019 is when my body said, hang on a second. And I had a stroke.
Bill Gasiamis (03:17)
How many hours a week do you think you were working?
Judy Kim Cage (03:19)
Well, not including the treble, ⁓ probably 50-55.
Bill Gasiamis (03:26)
Okay.
Judy Kim Cage (03:26)
Oh, wish, that wasn’t that that really wasn’t a ton compared to my Deloitte days where I’d be working up to 90 hours a week.
Bill Gasiamis (03:37)
Wow.
in that time when you’re working 90 hours a week. Is there time for anything else? you get to squeeze in a run at the gym or do you get to squeeze in a cafe catch up with a friend or anything like that?
Judy Kim Cage (03:51)
There are people that do. think, yeah, I mean, on certain particular weekends and my friends, a lot of my friends were also working with me. So there was time to socialize. And then, of course, we would all let off some steam, you know, at the pub, you know, at the end of a week. But
⁓ yeah, I remember on one of my very first jobs, I had been so excited because I had signed up to take guitar lessons and I was not able to leave in order to get there in time. ⁓ so that took a backseat.
Bill Gasiamis (04:40)
Yes, it sounds like there’s potentially lots of things that took a backseat. Yeah, work tends to be like that can be all consuming and when friendships especially are within the work group as well, even more so because everyone’s doing the same thing and it’s just go,
Judy Kim Cage (04:44)
Yeah, definitely.
Absolutely. We started as a cohort essentially of, I want to say 40 some people all around the same age. And then, you know, as the years ticked by, we started falling off as they do in that industry.
Bill Gasiamis (05:19)
Do you enjoy it though? Like, is there a part of you that enjoys the whole craziness of all the travel, all the hours, the work stuff? it? Is it like interesting?
Judy Kim Cage (05:31)
Yeah, I do love it. I actually do love my job. I love compliance. I love working within a legal mindset with other lawyers. And basically knowing that I’m pretty good at my job, that I can be very well organized, that it would be difficult even for a normal healthy person and challenging and that I can do well there.
And yeah, no, was, when I had put in a year, when I was in ⁓ acute therapy, ⁓ I had spoken with a number of students and they had interviewed me as a patient, but also from the psych side of it all, ⁓ asking, well, what does it feel like to all of a sudden have your life stop? And I said, well,
⁓ and things got a bit emotional, I said, I felt like I was at the top of my game. I had finally achieved the job that I absolutely wanted, had desired. ⁓ I felt like I’d found a home where I was now going to retire. And all of a sudden that seems like it was no longer a possibility.
Bill Gasiamis (06:55)
So that’s a very common thing that strokes have over say who I interviewed. They say stuff like I was at the top of my game and there’s this ⁓ idea or sense that once you get to the top of the game, you stay there. There’s no getting down from the top of the game and that it just keeps going and keeps going. And, I think it’s more about fit. sounds like it’s more about fit. Like I found a place where I fit. found a place where I’m okay.
or I do well, where I succeed, where people believe in me, where I have the support and the faith or whatever it is of my employers, my team. Is that kind of how you describe on top of your game or is it something different?
Judy Kim Cage (07:41)
I think it was all of those things, ⁓ but also, you know, definitely the kindness of people, the support of people, their faith in my ability to be smart and get things done. But then also ⁓ just the fact that I finally said, okay, this was not necessarily a direct
from undergrad to here. However, I was able to take pieces of everything that I had done and put it together into a position that was essentially kind of created for me and then launched from there. So I felt as though it was essentially having climbed all of those stairs. So I was at the top. Yeah.
you know, looking at my Lion King kingdom and yeah.
Bill Gasiamis (08:43)
just about to ascend and, and it was short lived by the sound of it.
Judy Kim Cage (08:49)
It was, it was, it was only one year beforehand, but I am actually still at the company now. I ⁓ had gone and done ⁓ well. So I was in the hospital for a few months and following that. Well, following the round of inpatient and the one round of outpatient, said, okay, I’m going back.
And I decided, I absolutely insisted that I was going to go back. The doctor said, okay, you can only work four hours a week. I said, four hours a week, what are you talking about? ⁓ But then I realized that four hours a week was actually really challenging at that time. ⁓ And then ⁓ I climbed back up. was, you know, I’m driven by deadlines and…
⁓ I was working, you know, leveraging long-term disability. And then once I had worked too many hours after five years, you know, I graduated from that program, or rather I got booted out of the program. ⁓ And then a year later, I was actually, well, no, actually at the end of the five years I was promoted. So, ⁓
after coming back full time.
Bill Gasiamis (10:20)
Wow. So this was all in 2019, the stroke. You were 39 years old. Do you remember, do you remember the moment when you realized there was something wrong? We’ll be back with more of Judy’s remarkable story in just a moment. If you’re listening right now and you’re in that stage where recovery feels invisible, where the fatigue is heavy, your brain feels slower.
or you’re trying to explain a rare condition like Moyamoya and nobody really gets it. I want you to hear this clearly. You’re not failing. You’re recovering. If you want extra support between episodes, you can check out my book at recoveryafterstroke.com slash book. And if you’d like to help keep this podcast going and support my mission to reach a thousand episodes, you can support the podcast at Patreon by visiting patreon.com/recoveryafterstroke.
All right, let’s get back to Judy.
The Moment of the Stroke
Judy Kim Cage (11:16)
Yes, although I was in a lot of denial. ⁓ So we had just had dinner with ⁓ my stepdaughter and her husband ⁓ and ⁓ we were visiting them in Atlanta, Georgia. ⁓ And we said, OK, we’ll meet for brunch tomorrow. You know, great to see you. Have a good night.
It was four in the morning and I was told I woke up screaming and I felt this horrible, horrible worst headache ever ⁓ on the right side. And I think because I have, I have Moyamoya syndrome, because of that and because I had had brain surgeries, ⁓
10 years or back in December of 2008, I had a brain surgery on each side. And that at the time was the best of care that you could get. You know, that was essentially your cure. And so I thought I was cured. And so I thought I would never have a stroke. So when it was actually happening, I was in
denial said there’s no way this could be happening. But the excess of pain, ⁓ the nausea and ⁓ it not going away after throwing up, the numbness ⁓ and then the eventual paralysis of my left side definitely ⁓ was evidence that something was very very wrong.
Bill Gasiamis (13:09)
So it was four in the morning, were you guys sleeping?
Judy Kim Cage (13:14)
⁓ yeah, we were in bed. Yep. And yeah, I woke up screaming. According to my husband, I don’t remember the screaming part, but I remember all the pain.
Bill Gasiamis (13:24)
Yeah, did he ⁓ get you to hospital? Did he the emergency services?
Judy Kim Cage (13:30)
I apparently was kind of threatening to divorce him if he called 911.
Bill Gasiamis (13:38)
Wow, that’s a bit rough. Oh my lord.
Judy Kim Cage (13:41)
I know. mean, that could have been his out, but he didn’t.
Bill Gasiamis (13:45)
There’s worse things for a human to do than call 911 and get your support. Like marriages end for worse things than that.
Judy Kim Cage (13:53)
because I’ve been to the ER many, many, many times. And because of the Moyamoya, you would always, it being a rare disease, you would never be told, well, you would have to explain to all the doctors about what Moyamoya was, for one. For two, to say if I had a cold, for instance, that Moyamoya had nothing to do with it.
Bill Gasiamis (14:11)
Wow.
Judy Kim Cage (14:19)
But also, you know, they would give me an MRI, oof, the claustrophobia. I detested that. And I said, if you’re getting me into an MRI, please, please, please, a benzodiazepine would be incredible. Or just knock me out, whatever you need to do. But I’m not getting into that thing otherwise. But, you know, they would take the MRI, read it.
and then say, hours and hours and hours later, there’s nothing we can do. The next course of action, if it was absolutely necessary, would be another surgery, which would have been bur holes that were drilled into my skull to relieve some sort of pressure. ⁓ In this particular case, the options were to ⁓ have a drain put in my skull.
and then for me to be reliant on a ventilator. Or they said, you can have scans done every four hours and if the damage becomes too great, then we’ll move on. Otherwise, we’ll just keep tabs on it, essentially.
Bill Gasiamis (15:37)
Yeah. So I know that feeling because since my initial blade in February, 2012, I’ve lost count how many times I’ve been to the hospital for a scan that was unnecessary, but necessary at the time because you, you know, you tie yourself up in knots trying to work out, is this another one? Isn’t it another one? Is it, it, and then the only outcome that you can possibly come up with that
puts your mind at ease and everybody else around you is let’s go and get a scan and then, and then move on with life. Once they tell you it was, ⁓ it was not another bleed or whatever. Yeah. However, three times I did go and three times there was a bleed. So it’s the whole, you know, how do you wrap your head around like which one isn’t the bleed, which one is the bleed and
It’s a fricking nightmare if you ask me. And I seem to have now ⁓ transferred that concern to everybody else who has a headache. On the weekend, my son had a migraine. And I tell you what, because he was describing it as one of the worst headaches he had ever had, I just went into meltdown. I couldn’t cope. And it was like, go to the hospital, go to the hospital, go to…
He didn’t go, he’s an adult, right? Makes his own decisions. But I was worried about it for days. And it wasn’t enough that even the next few days he was feeling better because I still have interviewed people who have had a headache for four or five or six days before they went to hospital and then they found that it was a stroke. it’s just become this crazy thing that I have to live with now.
Judy Kim Cage (17:26)
I essentially forced Rich to wait 12 hours before I called my vascular neurologist. And once I did, his office said, you need to go to the ER. And I said, okay, then that’s when I folded and said, all right, we’ll go. ⁓ And then, ⁓ you know, an ambulance came.
Bill Gasiamis (17:35)
Wow.
Judy Kim Cage (17:53)
took me out on a gurney and then took me to a mobile stroke unit, which there was only one of 11, there were only 11 in the country at the time. And they were able to scan me there and then had me basically interviewed by a neurologist via telecall. And this was, you know, before
the days of teams and zoom and that we all tested out ⁓ from COVID. ⁓ yeah, that’s.
Bill Gasiamis (18:35)
That’s you, So then you get through that initial acute phase and then you wake up with a certain amount of deficits.
Judy Kim Cage (18:37)
Yeah.
my gosh. ⁓ Well, yeah, absolutely. ⁓ Massive amounts of pain ⁓ from all the blood absorbing back into the brain. ⁓ The left side, my left side was paralyzed. My arm fell out of my shoulder socket. So it was hanging down loosely. ⁓ I had dropped foot, so I had to learn to walk again.
Double vision and my facial group on the left and then. Bluff side neglect.
Bill Gasiamis (19:31)
Yeah. So, and then I see in our, in your notes, I see also you had diminished hearing, nerve pain, spasticity, cognitive fatigue, ⁓ bladder issues. You’d also triggered Ehlers-Danlos symptoms, whatever that is. Tell me about that. What’s that?
Moyamoya Syndrome Stroke RecoveryJudy Kim Cage (19:56)
So I call myself a genetic mutant because the Moyamoya for one at the time I was diagnosed is discovered in 3.5 people out of a million. And then Ehlers-Danlos or EDS for short is also a genetic disorder. Well, certain versions are more genetic than others, but it is caused by a defect in your collagen, which
makes up essentially your entire body. And so I have hypermobility, the blood, I have pots. So my, my blood basically remains down by my feet, it pulls at my feet. And so not enough of it gets up to my brain, which also could, you know, have affected the moimoya. But
Essentially, it creates vestibular issues, these balance issues where it’s already bad enough that you have a stroke, but it’s another to be at the risk of falling all the time. Yeah. Or if you get up a little too fast, which I still do to this day, sometimes I’ll completely forget and I’ll just bounce up off the sofa to get myself a drink and I will sway and all of a sudden
Bill Gasiamis (21:07)
Yeah.
Judy Kim Cage (21:22)
onto the sofa or sit down right on the floor and say, okay, why did I not do the three-step plan to get up? ⁓ But sometimes it’s just too easy to forget.
Bill Gasiamis (21:37)
Yeah, yeah. You just act, you just move out of well habit or normal, normal ways that people move. And then you find yourself in a interesting situation. So I mean, how, how do you deal with all of that? Like you, you go from having experienced more and more by the way, let’s describe more and more a little bit, just so people know what it is.
Judy Kim Cage (22:02)
Absolutely.
So, my way is a cerebrovascular disorder where your internal carotid progressively constricts. So for no known reason, no truly known reason. And so because it keeps shrinking and shrinking, not enough brain, blood gets to your brain. So what the brain decides to do to compensate
is it will form these collateral vessels. And these collateral vessels, which there are many of them usually, you know, the longer this goes on, ⁓ they have very thin walls. So due to the combination of the thin walls, and if you have high blood pressure, these walls can break. And that is what happened in my case. ⁓
Well, the carotids will continue to occlude, but what happens is, ⁓ least with the surgery, they took my temporal artery, removed it from my scalp, had taken a plate off of my skull and stitched that.
temporal artery onto my brain so that it would have a separate source of blood flow so that it was no longer reliant on this carotid. So we know that the carotid, sorry, that the temporal artery won’t fail out. ⁓ So usually, ⁓ and this was my surgery was actually done at Boston Children’s Hospital ⁓ by the man who pioneered the surgery.
And he was basically head of neurosurgery at Harvard Medical School and Boston Children’s because they more often find this in children now. And the sooner they find it, the fewer collateral vessels will form once the surgery is performed.
Bill Gasiamis (24:17)
Okay, so the long-term risk is that it’s decreased, the risk of a blade decreases if they do the surgery early on too. I love that.
Judy Kim Cage (24:25)
The rest.
But I was diagnosed at the age of 29. So I had quite a while of these collateral vessels forming in what they call a puff of smoke that appears on the MRI. ⁓ And that is what, you know, Moyamoya essentially means in Japanese, is translated to in Japanese, it’s puff of smoke.
Bill Gasiamis (24:50)
Wow, you have been going through this for a while then. So I can understand your whole mindset around doctors, another appointment, another MRI. Like I could totally, ⁓ it makes complete sense. You you’re over it after a certain amount of time. Yeah, I’m the same. I kind of get over it, but then I also have to take action because you know what we know what the previous
Judy Kim Cage (25:07)
Absolutely.
Bill Gasiamis (25:19)
outcome was and now you’re dealing with all of these deficits that you have to overcome. Which are the deficits that you’re still dealing with that are the most, well, the most sort of prolonged or challenging or whatever you want to call them, whatever.
Cognitive Fatigue and Executive FunctioningJudy Kim Cage (25:34)
The most significant, I guess it’s the most wide ranging. But it is. ⁓ Energy management and cognitive fatigue. ⁓ I have issues with executive functioning. ⁓ Things are, you know, if I need to do sorting or filing. ⁓ That actually is.
one of my least favorite things to do anymore. Whereas it was very easy at one point. ⁓ And now if I want to clean up my inbox, it is just a dreaded task. ⁓ And so now I’ve learned that if I do a little bit of it every day, then I don’t have, it doesn’t have to take nearly as long. ⁓
Bill Gasiamis (26:26)
What
it’s dreaded about it is it making decisions about where those emails belong, what to do to them or.
Judy Kim Cage (26:33)
Oh, no, it’s just the time and energy it takes to do it. It drains me very quickly. Because you have to evaluate and analyze every line as you’re deciding what project it belongs to. And there’s a strategic way to do it in terms of who you normally deal with on each project, etc. etc. This chunk of time, calendar dates you’ve worked on it, etc. But, know,
That might by the time I get to this tedious task, I’m not thinking about it strategically. ⁓ Yeah, I’m just dragging each individual line item into a little folder. ⁓
So, ⁓ but yeah, like the cognitive deficits. gosh. mean, I’m working on a computer all day. I am definitely a corporate desk rat or mouse, you know, on the wheel. ⁓ And a lot of Excel spreadsheets and just a lot of very small print and sometimes I get to expand it. ⁓
And it really is just trying not to, well, the job involves making as few errors as you possibly can.
Bill Gasiamis (28:01)
Yeah.
Judy Kim Cage (28:02)
⁓ Now when I get tired or overwhelmed or when I overdo it, which I frequently frequently do, ⁓ I find out that I’ve made more errors and I find out after the fact usually. So nothing that’s not reversible, nothing that’s not fixable, but it still is pretty disheartening for a perfectionist type such as myself.
Bill Gasiamis (28:30)
Wow. So the perfectionism also has to become something that you have to deal with even more so than before, because before you were probably capable of managing it now, you’re less capable. yeah, I understand. I’m not a perfectionist by all means. My wife can tend to be when she’s studying or something like that. And she suffers from, you know, spending
Judy Kim Cage (28:46)
the energy.
Bill Gasiamis (29:00)
potentially hours on three lines of a paragraph. Like she’s done that before and I’ll just, and I’ve gone into the room after three hours and her, and her going into the room was, I’m going to go in and do a few more lines because she was drained or tired or, you know, her brain wasn’t working properly or whatever. I’m just going to go do three more lines and three hours later, she’s still doing those three lines. It’s like, wow, you need to get out of the, you need to get out. need to, we need to.
break this because it’s not, it’s not good. So I totally get what it’s liked to be like that. And then I have had the cognitive fatigue where emails were impossible. Spreadsheets forget about it. I never liked them anyway. And they were just absolutely forget about it. Um, I feel like they are just evil. I feel like the spreadsheets are evil, you know, all these things that you have to do in the background, forget about it. That’s unbelievable. So, um,
What was it like when you first sort of woke up from the initial stroke, got out of your unconscious state and then realized you had to deal with all of this stuff? I know for some time you were probably unable to speak and were you ⁓ trapped inside your body? Is that right or?
Judy Kim Cage (30:19)
I was in the ICU.
I was paralyzed on the left side, so I was not able to get up, not really able to move much. ⁓ I was not speaking too much, definitely not within the first week. I was in the ICU for 10 days. ⁓ And yeah, I just wasn’t able to do much other than scream from the beam.
⁓ And then I, once I became more aware, I insisted that I could get up and walk to the bathroom myself. I insisted that I could just sit up, get up, do all the things that I had done before. And it being a right side stroke as well, you know, I think helps contribute to the overestimation or the…
just conceitedness, guess, and this self-confidence that I could just do anything. Yes, absolutely. And I was told time and time again, Judy, can’t walk, Judy, can’t go to the bathroom, Judy, you can’t do these things. And I was in absolute denial. And I would say, no, I can, I can get up. And meanwhile, I would say that
Bill Gasiamis (31:30)
Delusion
Judy Kim Cage (31:51)
husband was so afraid that I was going to physically try to get up and fall over, which would not have been good. ⁓ And so, you know, there was, there were some expletives involved. ⁓ And, ⁓ and then eventually once I was out of the ICU, ⁓ I didn’t truly accept that I couldn’t walk until
Bill Gasiamis (32:00)
but.
Judy Kim Cage (32:20)
one of the PT students had put me into an exoskeleton and I realized that my foot did not move at all, you know, like a full five seconds after I thought I picked it up. And I said, wait, hang on, what’s going on here? And I said, ⁓ okay, I guess I have to admit that I can’t walk. And then I can’t, I can’t sit upright. I can’t.
You know, and like you had mentioned, you know, I had lost the signals from my brain to my bladder. They were slow or whatnot. And I was wetting the bed, like a child at a sleepover. And I was pretty horrified. And that happened for, you know, pretty much my, pretty much all my time at Kratie, except I got the timing down.
⁓ eventually, which was fantastic. But then when I moved to post-acute, ⁓ then I had to learn the timing all over again, just because, you know, of different, rules being different, the transfers being different, and then, ⁓ you know, just ⁓ the timing of when somebody would answer the call button, et cetera.
Bill Gasiamis (33:45)
Yeah.
Do you, what was it like going to rehab? I was really excited about it. I was hanging out because I learned that I couldn’t walk when the nurse said to me, have you been to the toilet yet? And I said, no, I hadn’t been to the toilet. We’re talking hours after surgery, you know, maybe within the first eight or nine hours, something like that. And I went to put my left foot down onto the ground. She was going to help me. She was like a really petite Asian.
framed lady and I’m and I’m probably two feet taller than her, something like that, and double her weight. And then she said, just put your hand on my shoulder and then I’ll support you. So I did that. I put my hand on her shoulder, stepped onto my left foot and then just collapsed straight onto the ground and realized, ⁓ no, I’m not walking. I can’t walk anymore. And then I was then waiting.
hanging out to go to rehab was really excited about that. ⁓ What was it like for you?
Moyamoya Syndrome Stroke Rehabilitation Experience
Judy Kim Cage (34:48)
Initially, well, do you so you mean. ⁓
Bill Gasiamis (34:56)
Just
as in like, were you aware that you could ⁓ improve things? Were you kind of like, we’re gonna overcome this type of stuff? Because you had a lot more things to overcome than I did. So it’s like, how is that? How do you frame that in your head? Were you the kind of person who was like, ⁓ rehab’s around the corner, let’s do that? Or were you kind of reluctant?
Judy Kim Cage (35:19)
It was a combination of two things. One, I had been dying to go home. I said, I absolutely, why can’t I go home? I was in the hospital for three weeks before we moved to the rehab hospital. And once we had done that, I was there basically for the entire weekend and then they do evaluations on Tuesday.
And so I was told on Tuesday that I would be there for another at least four to six weeks. And so that was even before therapies really began. So there was a part of me saying, I don’t care, let me go home and I’ll do outpatient every day and everything will be fine. At least I get to go home. But then the other part.
Bill Gasiamis (35:52)
Thanks.
Judy Kim Cage (36:11)
said, okay, well, once I realized I was stuck and that I couldn’t escape, I couldn’t go anywhere, ⁓ I actually, I did love therapy. ⁓ I loved being in speech therapy, being in OTE, being in PT even, because my girls were fantastic.
They were so caring, so understanding. They made jokes and also laughed at mine, which was even better. And when you’re not in therapy, especially on the weekends, you’re just in your room by yourself. And you’re not watching TV because that input is way too heavy. Listening to music.
maybe a little bit here and there. ⁓ You know, all the things that you know and love are nowhere to be found, you know, really. ⁓ Yeah, absolutely. Yeah, yeah. And I get claustrophobic in the MRI, in the hospital, et cetera. yeah.
Bill Gasiamis (37:14)
Oscillating.
Yeah.
I was on YouTube, searching YouTube videos that were about neuroplasticity, retraining the brain, that kind of stuff, meditations, type of thing. That really helped me on those weekends. The family was always around, but there was delays between family visits and what have you that couldn’t be there that entire time. ⁓ So I found that very interesting. And you know, rehab was a combination of
frustration and excitement, excitement that I was getting the help, frustration that things weren’t moving as quickly as I wanted. ⁓ And I even remember the occupational therapist making us make breakfast. And I wouldn’t recommend this breakfast for stroke survivors. I think it was cereal and toast or something like that. And I remember being frustrated, why are they making me make it? My left side doesn’t work. Like I can barely walk.
I cannot carry the glass with the tea or anything like that to me. What are these people doing? They should be doing it for us. I wasn’t aware. I wasn’t aware that that was part of the therapy. I just thought they were making us make our own bloody breakfast. I thought these people are so terrible. And it took a while for me to clue on like, ⁓ okay.
Judy Kim Cage (38:44)
you
Bill Gasiamis (38:52)
They want me to be able to do this when I get home. ⁓ understood. Took a while. I’m thick like that.
Judy Kim Cage (39:00)
Fortunately, wasn’t made to cook until close to the end. And also during outpatient, I was tasked to make kind of a larger, you know, crock pot dinner so that, you know, I could do that at home. Meanwhile, the irony of it all is that.
I can cook and I used to love cooking, but I don’t do it nearly as much as I used to. So that skill did not really transfer over. ⁓ I have Post-it notes up by the microwave that tell me right hand only because if I use my left hand, the temperature differential
I will burn myself ⁓ without even realizing it or even reaching for a certain part of a pan that I think is going to be safe and is somewhat heat resistant. And I touch it and then poof, well, you know, get a burn. So there are post-it notes everywhere. There’s one by the front door that says, watch the steps, because I had a couple of times flown down them and gashed my knee.
Bill Gasiamis (40:13)
Yeah.
Judy Kim Cage (40:26)
And it’s amazing actually how long a Post-It note with its temporary stick will stay up on a wall.
Bill Gasiamis (40:35)
Well, there’s another opportunity for you there, like do a project, ⁓ a longevity of Post-it Notes project, see how long we can get out of one application.
Judy Kim Cage (40:46)
Yeah, well, this one actually, so I think it was three months after I had moved in, which would have been 10 months into my stroke recovery. And that’s when I fell down these steps. And that’s when I put up the Post-It note. it has been, a piece of tape has been added to it.
but it only fell down, I think, a couple of years ago.
Bill Gasiamis (41:18)
Yeah. So 3M need to shift their entire focus. I feel like 3M. Yeah. I think 3M needs to have a permanent ⁓ post-it note application, but easy to remove. if I want to take it down, like it’s permanent once I put it up, but if I want to take it down, it’s still easy to remove and it doesn’t ruin my paint or leave residue.
Judy Kim Cage (41:44)
They do actually have that tech. have it for, they call it command. It’s what they have for the hooks for photos and whatnot. And then if you pull the tab and then release it, it will come off and leave the wall undamaged, but it will otherwise stay there for a long.
Bill Gasiamis (42:04)
Yes, yes, I think you’re right. Most of the time it works, yes. Okay, well, we’re moving on to other things. You’ve overcome a lot of stuff. You’re dealing with a lot of stuff. And yet, you have this disposition, which is very chirpy and happy, go lucky. Is it real, that disposition, or is it just a facade?
Using Humor in Moyamoya Syndrome and Stroke RecoveryJudy Kim Cage (42:29)
No, no, it’s real. It’s real. ⁓ I think I’ve always ⁓ tried to make light of things. ⁓ Humors, probably my first defense mechanism. ⁓ And I think that helped out a lot ⁓ in terms of recovery. And also, ⁓ it put my therapist in a great mood.
Also, because not many people did that apparently. You know, most people curse them off or, you know, were kind of miserable. And there were times when I was miserable too. Absolutely. But, but I probably took it out more on my husband than I did the staff. And he, and he would call, you know, I said, I was so mean to you, Rich. was so mean to you. And he said, yeah, you were nicer to the nurses than to me. And I.
I apologized for it, but at the same time I’m like, yeah, but sometimes, bud, you are so annoying.
Bill Gasiamis (43:33)
You had it coming.
Judy Kim Cage (43:34)
Yeah. Why are you so overprotective? Why do you point out every crack in the sidewalk? Why do you know, you still say I have to stop to tie up my hair when we’re walking on the sidewalk, you know, because you’re not supposed to do two things at once. ⁓ Yeah. So I felt as though I would make jokes all the time. I when my left hand would start to regain function.
I called it my evil twin because I didn’t even recognize that it was mine. But then I would give it a high five every time I started gaining function back. And I would say things like, yeah, hey, evil twin, congrats. Or ⁓ I would say, I guess I don’t have to clean the house anymore. I don’t have to use my left hand to dust. I’m not capable of doing it. So why do it?
Bill Gasiamis (44:29)
Yeah.
Judy Kim Cage (44:30)
And I’m like, let’s always look for the silver lining. And it would usually be a joke. But, you know, if you couldn’t make fun of it or think about the ridiculousness of it, then I think it would be easier to fall into a pit of despair.
Bill Gasiamis (44:48)
I agree with you and laughing and all that releases, know, good endo, good endorphins and good neurochemicals and all that kind of stuff really does improve your blood pressure. It improves the way that your body feels, you know, the tightness in your muscles and all that kind of stuff. Everything improves when you laugh and you have to find funny things about a bad situation to laugh at, to kind of dial down the seriousness of the situation. can
you know, really dial it down just by picking something strange that happened and laughing at it. I found myself doing that as well. And I’m similar in that I would go to rehab and they would, you know, we would chit chat like I am now with you and would have all sorts of conversations about all kinds of things. And the rehab was kind of like the, the, it was like the vessel, you know, to talk shit, have a laugh. ⁓
you know, be the clown of the rehab room. And I get it, everyone’s doing it tough, but it lightened the mood for everybody. You know, was, it’s a hard thing. You know, imagine it being just constantly and forever hard. And it was like, I don’t want to be that guy and wish they have fun as well. And, and I think my, my, my tough times were decreased as a result. Like, you know, those stuff, mental and emotional days, they, they come, but they go. then
you have relief from them. And I think you need relief.
Judy Kim Cage (46:23)
Absolutely. Otherwise, just could feel perpetual and just never ending. ⁓ And why or how could you possibly survive feeling that way?
Bill Gasiamis (46:39)
Yeah. So who are you now? as in your, how does your idea of who you are sort of begin to shift after the initial acute phase and now six years in, almost seven years into your stroke journey?
Finding Purpose After StrokeJudy Kim Cage (46:59)
I think I am.
I’m pretty confident in who I am, which is funny. ⁓ I ⁓ actually lean more into making more jokes or ⁓ lean into the fact that things don’t, they don’t have nearly the importance or the impact that you would otherwise think. ⁓ One of my sayings, I guess I say all the, you know, how they say don’t sweat the small stuff.
my big stuff, like big stuff became small stuff, you know. So it would have to be something pretty big in order for me to really, really, you know, think about it. And a lot of the little things, you know, the nuisances in life and stuff, would usually just laugh or if I tripped or something, then I would just laugh at it and just keep moving on. ⁓ And I think, you know,
It’s funny because some people will say, ⁓ gosh, like stop, you know, there is toxic positivity, right? And there’s plenty of that. And ⁓ I stay away from that, I think. But when I try to give people advice or a different outlook, ⁓ I do say, well, you you could think of it this way, you know.
It’s not all sunshine and rainbows and flowers and, you know, care bears, but it is, you know, but it, but you can pull yourself out of a situation. You can try to figure out a way to work around it. You can, you know, choose differently for yourself, you know, do things that you love. You know, you’re only given a certain amount of limited time on the earth.
So how do you want to spend it? And if you are on your deathbed, you know, would you have, do you have any regrets? You know, like you did read the books about, you know, that, ⁓ why am I forgetting? Doctors ⁓ that perform palliative care and, you know, they’ve written books about
you know what people’s regrets have been after, know, once they are about to pass and you know, that not taking action was a regret. You know, like why didn’t I do this? Or why didn’t I do this? Why didn’t I try this? Like really, what would have been the downfall to trying something? ⁓ And I find that, you know, aside from just naturally being able to see
things to laugh at or, or positive sides of things. ⁓ I tried, like, I wish that people could experience that without having gone through what we went through. ⁓ but that’s virtually impossible. I think.
Bill Gasiamis (50:18)
I think it’s impossible, totally, 100 % impossible because everybody thinks they’re doing okay until they’re not. You just cannot prevent somebody from going through something by taking the learning first. The learning has to come second.
Sad as that is.
Judy Kim Cage (50:39)
⁓ Well, and we all think we’re invincible to a large extent. ⁓ But ⁓ I think what I’ve been trying to do or me now, I’ve always, you know, volunteered in various ways, but now I take and hold extra value in being a mentor for other stroke patients.
Bill Gasiamis (51:03)
Yeah, yeah, that’s
Judy Kim Cage (51:04)
And for, you know, individuals that even just come up to me and talk about all of their medical problems, it doesn’t matter if it’s circulated or not, you know, it’s medically they’re like, there’s some white matter on my MRI, what do think I should do? I’m like, it’s not that simple of an answer. I think you should go to the doctor. Get on a list.
Bill Gasiamis (51:29)
Yeah.
Your journey seems like you’re growing through this adversity, like as in it’s very post-traumatic growth type of experience here. Something that I talk about on my book, the unexpected way that a stroke became the best thing that happened. Not something that I recommend people experience to get to the other side of that, of course. But in hindsight, like it’s all those things that you’re describing.
Judy’s Book: Super Survivor
And I look at the chapters because in fact, you’ve written a book and it’s going to be out after this episode goes live, which is awesome. And the book that you’ve written is called Super Survivor. And indeed that is a fitting title. Indeed it is. How denial, resistance and persistence can lead to success and a better life after stroke. Right? So just looking at some of the chapters, there’s
a lot of overlap there, right? And one of the chapters that there’s overlap in is the volunteering and purpose. I’ve got parts of my book that specifically talk about doing stuff for other people and how that supports recovery and how the people who said that stroke was the best thing that happened to them, the ones that I interviewed to gather the data, one of the main things that they were doing was helping other people, volunteering in some way, shape or form. And that helped shape their purpose in life.
and their meaning in life. And it’s how I got there as well. It was like, okay, I’m gonna go and prevent stroke. I’m gonna go talk on behalf of the Stroke Foundation. We’re gonna raise awareness about what stroke is, how to take action on stroke, what to do if somebody’s having a stroke. And I started to feel like I gained a purpose in my life, which was gonna to not allow other people to go through what I went through. And then,
With that came public speaking and then with that came the podcast and then the purpose grew and it became really ⁓ all encompassing. It’s like, wow, like I know what my mission is. I didn’t seek to find it. I stumbled across it and the chapter in my book is called stumbling into purpose because you can’t think it up. You just have to take action and then bam, bam, it appears. Like, is that your experience?
Judy Kim Cage (53:53)
⁓ Well, so much of my identity had been wrapped up in my occupation. ⁓ And so when, you know, the stroke first happened, et cetera, but then as time has passed, ⁓ yeah, I’ve absolutely found more meaning in providing comfort to other stroke patients.
whether it’s because they see me as inspiring that I was able to recover so quickly or that I was able to go back to work, you know, permanently. And just to give them hope, really. And ⁓ when I was in acute, I felt as though like,
We do so much of the recovery alone ⁓ and there isn’t a ton of, you know, of course our therapists are fantastic and they’re, you know, they’re loving and they’re caring. But in terms of having to make it through, you know, certain darkness alone or, ⁓ you know, just feeling sorry for yourself even sometimes, or feeling like, hey, I can do everything, but nobody’s encouraging that.
because they think it’s dangerous. ⁓ I had wished that, you know, there were more people who could understand ⁓ what survival and then recovery was, you know, truly like. And so I had read that in a number of books before hearing people tell me their stories in person because
Emotionally, I absorbed too much of it. ⁓ I wanted to, I think I passed that five-year survival mark of the 26.7%, which I know varies for everybody. ⁓ at the same time, I said, wow, I did, I made it to the other side, I beat these odds. I think I wanted to keep it secret from all the people I worked with.
which I still have actually, it won’t be for too much longer. ⁓ But ⁓ just being able to share that and to be vulnerable and to say all the deficits that I have and what I have overcome, ⁓ I think it’s also given people some hope that they can, if she was able to do it, then maybe it isn’t as tough as I think it is.
Bill Gasiamis (56:43)
Anyone can. Yeah, I love that. That’s kind of my approach to, you know, I’m just a average, humble, normal, amazing guy. You could do it too. You know, I could, I could teach you to what you need to do is learn. ⁓ but that’s true. It’s that it’s that we are, I get, I get people come on the podcast going, I’m so nervous to meet you. You’re on the, I’m on your podcast.
Dude, you don’t know who I am. Like if you think I’m the podcast guy, you’ve got no idea. I’m in the back of my, in my garden, in a shed. what was something that’s meant to be a shed that looks like a studio and amazing and all this kind of stuff. Like, dude, I’m just.
Judy Kim Cage (57:29)
would not have known if you hadn’t told me.
Bill Gasiamis (57:32)
That’s right, because looks can be deceiving and that ideas that we get of people are just, you know, they’re just not accurate until we get to spend time with people and understand them. And I always try and play down who I am so that people can see that I am just a regular guy who went through this and had no, no equipment. had no ⁓ knowledge. had no skills overcoming learning. Like I just, I picked up what I needed when I could just so that I can stumble through to the next
hurdle and stumble through that one and then keep going. I really want people to understand that even the people who appear to be super fabulous at everything, like they’re just not, nobody is that, everyone is just doing their best they can. Even the guy who’s got more money than you, a bigger house, whatever, a better investment, all that stuff, they’re all faking it until shit hits the fan and then they’ve got to really step up to be who they are.
You know, that’s what I find. But attitude, mindset, ⁓ approach, know, laughing, doing things for other people all help. They are really important steps, you know. The other chapter that kind of.
made me pay attention and take note ⁓ was you talk about the night everything changed, complicated medical history, lifesavers, volunteering and purpose, the caregivers, ⁓ easing back into life, which I think is a really important chapter, returning to work, which is really important. then chapter nine, life after stroke continued. That kind of really
is something that made me pay attention because that’s exactly what it is, right? It’s life after stroke. It’s like a continuation. It’s a never ending kind of ⁓ unattainable thing.
Judy Kim Cage (59:27)
It just keeps rolling on. doesn’t stop. You know, even if you’ve gone through a hardship and overcome it, it doesn’t mean that life stops. You’ve got to keep learning these lessons over and over and over again. Even if you don’t want to learn them, however stubborn you are. ⁓ And I, you know, I one thing that I had written about was that I had resented ⁓
you know, what I had gone through for a little while. I said, why do I still have to learn the same lessons that everybody else has to learn? You know, if I’ve gone through this kind of transcendental thing, why do I still have to learn, you know, these other things? But then I realized that I was given the opportunity ⁓
from surviving, was given another chance to be able to truly realize what it was like to be happy and to live. And I’d never, I mean, I had, I had been depressed, you know, for an anxious for years. And, you know, I’ve been in therapy for years and, ⁓ you know, it really wasn’t truly until kind of getting this push of the fast forward button
on learning lessons that it truly became happy, like true, true happiness. And I said, wow, that was the gift. And then to try to pass that on.
Bill Gasiamis (1:01:10)
It’s a pretty cool life hack. A shit way to experience it, but a pretty cool life hack.
Judy Kim Cage (1:01:15)
Yeah, yeah, yeah, definitely don’t I don’t recommend it I don’t
Bill Gasiamis (1:01:20)
Yeah. You get the learning in a short amount of time instead of years of years of wisdom and developing and learning and overcoming, which you avoided up until your first, you know, 38 years. And then, you know, you then, and then you kind of all of a sudden go, okay, well, I really have to buckle down and do these, ⁓ these modules of learning and I’ve got no choice. And I was the same. ⁓ and I have my days, I have my
Good days, bad days, and I even recently had a bit of a day where I said to my wife, I got diagnosed with high blood pressure, headaches, migraines, a whole bunch of stuff, and then just tomorrow, I’m I’ve had enough. Why do I need to to be diagnosed with more things? Why do I need to have more medical appointments? Enough, it’s enough. I need to stop this stuff. It’s not fun. And then it took me about half a day to get over myself and go, well, I shouldn’t be here, really. Technically,
Somebody has three blades in the brain, you know, I don’t know, maybe 50 years ago, they weren’t gonna make it. So now you’ve made it also high blood pressure. If you had high blood pressure 50 years ago, there was nothing to do to treat it. It was just gonna be high until you had a heart attack or ⁓ a brain aneurysm burst or something. And it’s like, I get to live in a time when interventions are possible and
it is a blip on the radar. Like just all you do is take this tablet and you’re fine. Not that I revert to give me the tablet solution. I don’t, I’m forever going under the underlying cause. I want to know what the underlying cause is trying to get to the bottom of all of that. But in the meantime, I can remain stable with this little tablet and ⁓ decrease the risk of another brain hemorrhage. So it’s cool, know, like whatever.
And that kind of helps me get through the, why me days, you know, cause
They’re there, they come, they turn up, especially if it’s been one day after the next where things have been really unwell and we’ve had to medical help or whatever. When it’s been kind of intense version of it, it’s like, okay, I don’t want any more of this. So I get the whole, I’ve experienced the whole spectrum in this last 13, 14 years. We’re coming up to, I think the 20th or 21st, I think is my,
maybe the 25th of my anniversary of my brain surgery. Jeez, I’ve come a long way. It’s okay. It’ll be like 11 years since my brain surgery. A lot of good things have happened since then. We got to live life for another 13 years, 11 years. I keep forgetting the number, it doesn’t matter. Yeah.
Judy Kim Cage (1:04:17)
Mine will have been my 17th ⁓ anniversary of my brain surgery ⁓ will be in January, sorry, in December. And then the seventh anniversary of the stroke is in January. So lot of years.
Bill Gasiamis (1:04:33)
Yeah, yeah. A lot
of years, a lot of years, great that they’ve happened and I’m really happy with that. Keep doing these podcasts, makes me forget about myself. It’s about other people, so that’s cool. know, meet people like you, putting out awesome books. And when I was going through early on, there wasn’t a lot of content. It was hard to get content on stroke surviving, recovery, all the deficits, all the problems. That’s part of the reason why I started this.
And now I think I’ve interviewed maybe 20 or 30 people who have written a book about stroke, which means that the access to information and stories is huge, right? So much of it. ⁓ Your book comes out in early December. Where is it going to be available for people to buy?
Conclusion and Final ThoughtsJudy Kim Cage (1:05:20)
It is currently available to download ⁓ through the Kindle app and through Amazon. The hard copies will be available to order through Amazon and hopefully in other booksellers, but that’s TBD.
Bill Gasiamis (1:05:39)
Yeah, well, we’ll have all the current links by then. We’ll have all the current links available in the show notes. ⁓ At the beginning of this episode, I would have already talked about the book and in your bio when I’m describing the episode and who I’m about to chat to. So people would have already heard that once and hopefully they’ll be hearing it again at the end of the episode. So guys, if you didn’t pay attention at the beginning, but now you’re at the end, it’s about to come. I’m going to give all the details.
Judy Kim Cage (1:06:07)
stuck
around.
Bill Gasiamis (1:06:09)
Yeah.
If you stuck around, give us a thumbs up, right? Stuck around in the comments or something, you know? ⁓ Absolutely. Thank you so much for joining me, reaching out, sharing your story. It is lovely to hear and I wish you well in all of your endeavors, your continued recovery. yeah, fantastic. Great stuff. Thank you so much. Thank you.
Well, that’s a wrap for another episode. want to thank Judy for sharing her story so openly. The way she spoke about denial, rehab, reality, cognitive fatigue and rebuilding identity is going to help a lot of people feel less alone. If you’re watching on YouTube, let us know in the comments, what part of Moyamoya Syndrome stroke recovery has been the hardest to explain to other people for you? Was it the physical symptoms or is it the invisible ones?
like fatigue and cognition. And if you’re listening on Spotify or Apple podcasts, please leave a review. It really helps other stroke survivors find these conversations when they need them most. Judy’s book is called Super Survivor, How Denial Resistance and Persistence can lead to success and a better life after stroke. And you’ll find the links in the show notes. And if you want more support from me, you can
Grab a copy of my book at recoveryafterstroke.com/book, and you can become a Patreon supporter at patreon.com/recoveryafterstroke. It genuinely helps keep this show alive. Thanks again for being here. Remember you’re not alone in this recovery journey and I’ll see you in the next episode. Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals.
Opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed. All content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical
and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content. If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor
or other medical professional. If you are experiencing a health emergency or think you might be, call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department. Medical information changes constantly. While we aim to provide current quality information in our content, we do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk.
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The post Moyamoya Syndrome Stroke Recovery: How Judy Rebuilt Her Life After a “Puff of Smoke” Diagnosis appeared first on Recovery After Stroke.
Stem Cell Stroke Recovery: What the Research Says (and What It Doesn’t)If you’ve had a stroke (or you love someone who has), you’ve probably seen the same promise pop up again and again:
“Stem cells can fix the damage.”
And when you’re tired, frustrated, and doing the hard work of rehab every day, that promise can feel like a lifeline.
But here’s the problem: hope is powerful… and hype knows it.
A viewer recently asked me a question that’s become more common over the last few years: “What can you say about the effectiveness of STC30 stem cell treatment?” And my honest first reaction was: I don’t even know what that is.
So instead of guessing, I did what I always encourage stroke survivors to do:
I checked. Carefully.
Because the last thing I want is to sound confident while accidentally sending someone into an expensive rabbit hole.
What most people think stem cells do (and why that’s not quite right)When people hear “stem cells,” it’s easy to imagine a simple story:
“New cells will replace the damaged brain cells… and I’ll be back to normal.”
But most current thinking in research is closer to this:
Stem cells may act more like helpers than replacements.
Instead of becoming brand-new brain tissue, the hope is that stem cells may release signals that support healing, things like:
- calming inflammation
- improving the “repair environment” in the brain
- supporting blood flow and recovery processes
- encouraging new connections (neuroplasticity)
So rather than “magic new brain,” the real question becomes:
Does this create better conditions for recovery?
That’s still an exciting idea. But exciting isn’t the same as proven.
The honest truth about stem cell stroke recovery researchWhen you zoom out and look at the research as a whole, the most accurate summary is this:
There are encouraging signals… and real uncertainty.
Some studies suggest stem cell approaches might help some people improve things like movement, function, or daily activities especially under certain conditions.
But here’s the fine print most people never see:
1) Studies don’t all use the same approachTrials vary widely in:
- the type of cells used
- how they’re prepared
- when they’re given (early vs later)
- how they’re delivered (IV drip vs artery delivery vs other methods)
- what outcomes they measure
- how long participants are followed
So when someone says, “stem cells work,” the real question is:
Which stem cells are given when, given how, and for who?
2) Quality varies across trialsNot all trials are designed equally. Some are small. Some use different measurement scales. Some follow up for shorter periods. And that makes it hard to draw strong conclusions that apply to everyone.
3) Long-term certainty still isn’t thereEven when short-term safety looks okay in some studies, long-term tracking can be limited depending on the approach used.
So the responsible stance is not “yes” or “no.”
It’s: “Show me the details.”
Why branded programs confuse people (and what to do about it)This is where many survivors get stuck.
A clinic or company may use a name that sounds scientific, something like “STC30,” “protocol X,” “advanced regenerative therapy,” but the name itself doesn’t automatically tell you:
- what the cells actually are
- whether it’s been tested publicly
- whether results are published
- whether it’s regulated as treatment, trial, or something else
So if the name is unclear, don’t decide based on the label.
Decide based on the details.
“Promising doesn’t automatically mean proven.”
My simple 3-question filter for any stem cell offerYou don’t need a science background to avoid being misled.
Here’s the filter I use simple, practical, and hard to game:
1) Is this proven… or experimental?If a provider can’t clearly explain in plain English what the treatment actually is, where it comes from, and what the protocol involves, treat it as experimental.
Experimental doesn’t automatically mean bad.
It just means: you’re stepping into uncertainty, and you deserve to know that upfront.
2) What evidence is public and checkable?Look for things like:
- published studies you can read
- registered clinical trials
- clear reporting on outcomes and side effects
- follow-up data over time
If all you’re getting is testimonials and before/after stories, that might feel hopeful… but it’s not enough to make a serious decision.
3) What’s the real cost (money and focus)?This one is huge in stroke recovery.
Sometimes people chase a big intervention and accidentally reduce the things that are already proven to help:
- consistent rehab practice
- repetition and movement training
- sleep and recovery
- emotional support and community
- nutrition and general health basics
So if you ever explore stem cells, my personal view is:
Don’t let it replace the fundamentals.
Treat it as an add-on decision, not the main plan.
Questions to ask any provider before you spend a centIf you’re seriously considering stem cell therapy, print this list or screenshot it.
Ask your provider:
- What exactly are the cells?
- Where do they come from?
- How are they prepared and tested for quality?
- How is it delivered: IV drip, injection, artery, or other?
- Who is it best suited for, and who should NOT do it?
- What are the known risks and side effects?
- What follow-up do you provide, and for how long?
- Is this part of a registered clinical trial or private treatment?
- Can I see the trial registration or published data?
If they can answer calmly and clearly, that’s a good sign.
If they dodge, rush, or oversell?
Pause.
The research shortcut that changed how fast I can respondI used to spend half a day digging through articles, trial registrations, and scattered resources, especially when someone asked a question about a product or protocol name I didn’t recognize.
Now I use Turnto.ai to speed up the finding part, and then I still do the most important step:
I check what matters.
That means:
- reading beyond headlines
- looking at study details
- comparing sources
- staying honest about what’s known vs unknown
If you’re the kind of person who wants to stay current, tools like that can help you find relevant research faster but the real power is still the same skill:
curiosity without getting fooled by hype.
Where to go next if you feel stuck in recoveryIf you’re reading this and thinking, “I just want something that works,” I get it.
But the best progress usually comes from:
- a clear plan
- consistent practice
- the right supports
- and not wasting energy on shiny distractions
If you want to go deeper, here are two ways I can support you:
- Book: recoveryafterstroke.com/book
- Patreon: patreon.com/recoveryafterstroke
And if you haven’t watched the video yet, it’s embedded above because seeing how I search and how I evaluate claims can help you do the same.
This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
The post Stem Cell Stroke Recovery: What the Research Says (and What It Doesn’t) appeared first on Recovery After Stroke.
Debra Meyerson and the “Slow Fall Off a Cliff”: Aphasia After Stroke, Identity, and What Recovery Really MeansThere are stroke stories that arrive like lightning.
And then there are the ones that feel like a quiet, terrifying slide hour by hour until you wake up and everything is different.
For Debra Meyerson (also known as Deborah), that difference had a name: “the slow fall off a cliff.” Her husband Steve describes watching the change unfold overnight in the hospital, neurological tests every hour, skills fading, the unknown getting heavier with each check-in. And the scariest part? Not knowing where the bottom was.
This episode isn’t only about what Debra lost. It’s about what she rebuilt with aphasia, with grief, with a fierce independence that made asking for help its own mountain, and with a new definition of recovery that doesn’t depend on going back in time.
When Stroke Doesn’t “Hit”… It DevelopsOne of the most jarring elements of Debra’s experience was the way the stroke revealed itself.
Steve shares that Debra left the emergency room still talking, slurring a little, but still planning. Still believing she’d be back teaching soon. Then the overnight monitoring began, and the decline became visible.
From midnight to morning, her movement and speech changed dramatically.
By morning, she couldn’t move her right side. And she couldn’t make a sound.
That’s what makes Debra’s phrase so powerful: it captures the reality many survivors and families live through, watching ability disappear in stages, not all at once. It’s not just a medical event. It’s an emotional one.
And it changes how you experience time. The mind starts bargaining. The heart starts bracing. The body is suddenly not predictable anymore.
The Hidden Clue: Dissection, Headaches, and Near-MissesDebra’s stroke was ischemic, but the cause wasn’t a typical blood clot. Steve explains that it was due to a dissection, a tear in the inner wall of an artery.
In the months leading up to the stroke, there were warning signs:
- severe headaches
- episodes where she nearly lost consciousness
- a moment where she told their son, “I think I’m having a stroke,” but the symptoms resolved before EMS arrived
Steve describes a likely “opening and closing” pattern of temporary interruptions to blood flow that didn’t show up clearly during exams because, in the moment, she appeared okay.
This is one reason caregivers can feel so haunted after the fact: you did the right things, you sought help, you went to specialists… and the stroke still happened.
That’s not failure. That’s reality.
20230922-GSE headshots at CERAS building in Stanford, CAAphasia After Stroke: When Words Don’t Do What You WantAphasia isn’t one experience. It’s a spectrum, and Debra’s challenge is word-finding, both in speaking and writing.
When Bill asks whether writing is easier than speaking, Debra’s answer is simple and blunt: it’s hard either way.
She also notes that dictation isn’t a shortcut.
What makes Debra’s story especially moving is how Steve describes the long arc of speech returning:
- weeks before she could even form sounds
- a month or two before repeating words
- then, months later, the first original word that made it out unprompted, not as an exercise
It happened during a normal moment at a table with family, searching for the name of the pig from a movie no one could remember.
And Debra suddenly blurted out:
“Babe.”
It might sound small to someone who’s never experienced aphasia. But for anyone who has, or for anyone who’s loved someone through it, that moment is enormous.
It’s proof that the brain is still reaching for language. Proof that the person is still in there, still trying to connect.
And yes, Steve mentions melodic intonation therapy, a method that attempts to engage the brain’s musical/singing pathways to support speech. Debra’s improvement, even years later, is described as gradual marginal gains that add up over time.
The Identity Problem Nobody Prepares You ForWhen Bill asks what part of her old identity was hardest to let go, Debra points to the heart of it:
- Stanford professor
- athlete
- fiercely independent
- skiing (a love that mattered deeply)
- the ability to do life without needing so much help
This is the part many survivors don’t see coming: you’re not only recovering movement or speech. You’re grieving a version of yourself that once felt automatic.
And that grief can be complicated, because you might still look like you.
Inside, everything is renegotiated.
This is where Debra and Steve offer something that can change the trajectory of recovery: adaptation instead of abandonment.
Debra couldn’t ride a single bike anymore, but they began riding a tandem, and it became the thing they could do together vigorously, something athletic, meaningful, and shared.
Not the same.
But real.
Cycles of Grief: Joy Can Trigger LossDebra describes grief as something that shows up constantly, “every day… every hour.”
Steve offers a powerful example: becoming grandparents.
Debra was ecstatic. Over the moon.
And then, the next morning, she was furious, spring-loaded into a bad mood, snapping at everything.
Why?
Because beneath the joy was a private inventory of what she couldn’t do:
- hold the baby safely
- change a diaper
- be alone with their grandson the way she wanted to be
- chase a toddler the way she imagined
This is what “cycles of grief” looks like.
Not sadness replacing joy.
Sadness sitting next to joy.
And if survivors don’t understand that’s normal, they can interpret it as brokenness or failure.
It’s not.
It’s grief doing what grief does: reminding you of what mattered.
The Care Partner Trap: Guilt, Burnout, and the “Fix It” ReflexCare partners often disappear inside the role. Steve names a different approach, one supported early by friends who told him plainly: if you don’t take care of yourself, you’re no use to Deb.
So he set priorities:
- exercise
- eating well
- sleeping well
He also acknowledges how support made that possible: family help, flexible work, and friends showing up.
Then comes a line that many couples will recognize immediately: toxic positivity.
Steve admits he struggles with sadness; he tends to solve problems, cheer people up, and push toward the bright side. But Debra doesn’t always want to be talked out of it. Sometimes she needs space to grieve without being “fixed.”
That’s the lesson:
Support isn’t always uplifting someone.
Sometimes support is staying present while they feel what they feel.
“True Recovery Is Creating a Life of Meaning”Debra’s philosophy shows up in the opening of her book and in the arc of this conversation:
“True recovery is creating a life of meaning.”
At first, recovery was about returning to who she used to be, therapy, effort, pushing hard.
Then something shifted: writing a book became a turning point. It helped her stop using her old identity as the measuring stick and start asking a new question:
“How do I rebuild a life I can feel good about with the cards I’ve been dealt?”
That idea is the bridge for so many survivors:
You don’t have to pretend you’re fine.
You don’t have to deny what you lost.
But you also don’t have to wait for a full return to start living again.
Debra Meyerson: Aphasia After Stroke InterviewDebra Meyerson’s “slow fall off a cliff” stroke led to aphasia, grief, and a new definition of recovery: rebuilding identity with meaning.
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Highlights:
00:00 Introduction and Background
06:11 The Experience of a Stroke: A Slow Fall Off a Cliff
22:45 Navigating Caregiving: Balancing Needs and Support
32:01 Understanding Aphasia: A Spectrum of Experiences
43:05 The Importance of Sadness in Healing
50:08 Finding Purpose Through Advocacy
53:31 Building the Stroke Onward Foundation
57:12 Advice for New Stroke Survivors
Transcript:
Introduction and Background – Steve Zuckerman and Debra MeyersonBill Gasiamis (00:00)
Welcome to the recovery after stroke podcast. name is Bill. And if you’re a stroke survivor or you love someone who is you’re in the right place before we begin a genuine thank you to my Patreon supporters. After more than 10 years of hosting this show solo, your support helps cover the costs of keeping it online and helps me keep showing up for stroke survivors who need hope and direction. And thank you to everyone who supports the show in the simple ways to YouTube comments, Spotify, Apple reviews.
people who’ve grabbed my book, and even those who stick around and don’t skip the ads. It all matters more than you know. Today you’re going to meet Deborah Meyerson and her husband, Steve Zuckerman. Deborah describes her stroke as a slow fall off a cliff. And that phrase captures something so many stroke survivors experience but struggle to explain. We talk about aphasia after stroke, word finding.
The moment a single word returned and what happens when recovery stops meaning going back and starts meaning rebuilding a life you can actually feel proud of. Deborah and Steve Myerson. Welcome to the podcast.
Debra and Steve (01:08)
Steve Zuckerman That’s okay. I don’t mind being Mr. Meyerson from time to time.
Bill Gasiamis (01:17)
Steve Zuckerman, of course. I mean, I’ve seen it on every email. I’ve seen it on every conversation we’ve had, but that’s okay. I mean, you’ve probably been called worst, Steve.
Debra and Steve (01:29)
Absolutely, much worse.
Bill Gasiamis (01:32)
Debra, before the stroke, how would you have described yourself professionally, socially and personally?
Debra and Steve (01:39)
Outgoing, social, comfortable, no time to to to other’s time. Not taking up other people’s time? Yes. In contrast to me.
Bill Gasiamis (01:59)
Yes, David, you’re very needy.
Debra and Steve (02:02)
Yeah,
and ⁓ yeah, it’s really outgoing.
Bill Gasiamis (02:09)
Outgoing, yeah, fantastic.
Debra and Steve (02:11)
I’ll add, because you didn’t say it, a incredibly hardworking, self-demanding professional for whom good was never good enough. Yeah. Yeah. Yeah. Something like that.
Bill Gasiamis (02:23)
perfectionist.
Fair enough Steve. What roles defined you back then? you’re a partner, you’re a father. How did you go about your day?
Debra and Steve (02:37)
I mean, I think, you know, very similar to Deb, we were both hard driving professionals who had serious careers. We had three kids that we were raising together and both took parenting very seriously. So worked really hard, you know, to not travel at the same time, to be home for dinner, ⁓ to be at sports games. And we were both very athletic. So both things we did together and things we did separately.
I think, you know, before Deb’s stroke, most of our time and attention was focused on career and family and, you know, sort of friends were a third, but, ⁓ staying healthy and staying fit. So those were kind of all parts of, I think, who we both were. met mother, ⁓ athletic sailor, biker, ⁓
⁓ family is first in academics.
Bill Gasiamis (03:44)
and academic and what field were you guys working in?
Debra and Steve (03:48)
No, am a, Steve is not academic. I am an academic. ⁓ Deb was, you know, immediately before the stroke. Deb was a tenured professor at Stanford. She had had lots of other academic jobs before that. ⁓ We met when
I was in grad school for an MBA and Deb was getting her PhD. ⁓ So, you know, she is lot smarter than I am and was willing to work a lot harder academically than I ever was. ⁓ I’ve bounced back and forth between kind of nonprofit roles, nonprofit management roles, and a career in finance and business. So I sort of…
have moved back and forth between for-profit and not-for-profit, but always sort of on the business side of things.
Bill Gasiamis (04:50)
often say when people meet my wife, Christine, for the first time and we talk about what we do and the things that we say. I always say to people that between me and my wife, we have four degrees. And then I qualify that. say, she has four and I have zero. And ⁓ she has a master’s in psychology, but ⁓ I never went to university. I never did any of that stuff.
Debra and Steve (05:10)
Yeah.
Bill Gasiamis (05:19)
So it’s very interesting to meet somebody who’s very academic and to be a part of her life when she’s in the study zone. my gosh, like I have never studied that much, that intensely, that hard for anything. And it’s a sight to behold. And I’m not sure how people go through all the academic side, all the requirements. And then also Deb, being a mom, being a friend.
being active in your community and doing all the things that you do. I just don’t know how people fit it in. So it’s a fascinating thing to experience and then to observe other people go through.
Debra and Steve (05:57)
It’s really that we had really a lot of time to talk. It was a full life.
Debra Meyerson – The Experience of a Stroke: A Slow Fall Off a CliffBill Gasiamis (06:11)
Yeah, fantastic. What you did, Deb has described the ⁓ stroke as a slow fall off a cliff. What did it actually feel like in the first moments that the stroke happened?
Debra and Steve (06:28)
Two
weeks after my stroke, I am going to the, back to the classroom. I am really not aware of the damage. So right at the outset, Deb was kind of in denial. As the symptoms were first starting to set in, she was still talking about
you know, okay, this is annoying, but in three weeks I’m starting the semester ⁓ and genuinely believed she would. actually the slow fall off a cliff was really how I described the first full night in the hospital. This was in Reno, Nevada. ⁓ And Deb sort of left the emergency room talking.
slurring her words a little bit, but talking about how she was going to be back in the classroom. And then over the course of that night, from midnight to eight in the morning, they woke her every hour to do a neurological test, you move your arm, move your leg, point to this, you know, say this word and just her skills got worse and worse and worse. And in the morning,
She couldn’t move her right side at all and couldn’t make a sound. And that was the, that’s what we called the slow fall off the cliff because we knew at midnight that there was significant brain damage, but we didn’t see the ramifications of that damage. sort of happened over that eight hour period. ⁓ that Deb really wasn’t aware of any of that. was.
you know, kind of her brain was in survival mode. ⁓ But for myself and our oldest son, Danny, you know, that was sort of a feeling of helplessness. was watching the person you love kind of fade away or the capabilities fade away. And we didn’t know how low the bottom would be ⁓ without being able to do anything.
Bill Gasiamis (08:53)
Is there an explanation for that? Now, obviously Deb had a stroke, so that’s the overarching issue, the problem. But I’ve had a lot of stroke survivors explain their symptoms in that slow onset ⁓ situation, whereas mine were just there. I had a blade in my brain, the symptoms were there. Another person ⁓ had an ischemic stroke, bang, the symptoms were there.
So why does it take so long for some people to, for the symptoms to develop?
Debra and Steve (09:25)
I had a dissection five months ago for this stroke. I had really bad headaches.
Yeah, so five, six months before Deb’s stroke, she was having bad headaches. She had two episodes where she kind of almost lost consciousness. And one of them, she actually said to our son, call dad, I think I’m having a stroke. And by the time the EMS got there, she was fine. ⁓ Her stroke, it turned out was caused by a dissection, which is a tear.
in the inner wall of the artery. So in some ways it’s like a blood clot. It is an ischemic stroke because it’s the blockage of blood flow. But unlike most ischemic strokes, it’s not because of a blood clot. It’s because of this flap of, it’s not biologically skin, but it’s like a flap of skin coming across and blocking off the blood flow. And what they think happened, and it’s really just educated guessing, is that
for that six month period, the flap was there, but it kind of kept opening, closing, opening, closing. So she’d have temporary loss of blood flow to the brain, but not permanent loss.
Bill Gasiamis (11:04)
We’ll be back with more of Deborah Meyers’ remarkable story in just a moment, but I wanna pause here because what Deborah and Steve are describing is something a lot of us live with quietly. That feeling, you can be having a good moment and then grief shows up out of nowhere, or you’re working so hard to stay positive and it starts to feel like pressure instead of support. In the second half, we’ll go deeper into the cycles of grief.
the trap of toxic positivity and the shift that changed everything for Deborah when she stopped measuring recovery by who she used to be and started rebuilding identity with meaning. If this podcast has helped you feel less alone, you can support it by sharing this episode with one person who needs it, leaving a comment or subscribing wherever you’re watching or listening. All right, back to Deborah and Steve.
Debra and Steve (11:58)
And when she had those two events, it was probably stayed closed a little bit longer, but then opened up. But she had a scan, she went to neurologists and because every time she was examined, it was okay. They didn’t find the problem. And then when she had the stroke, it was a permanent blockage that just didn’t open back up again. And
Your question is a great one that I’ve never asked. I don’t know why, because what they told us was we can see the damage to the brain. The brain has been damaged. They can tell that on the scan, but that the impact of that damage, how it will affect your motion and your speech will play out over time. And I don’t know why that was true for Deb, whereas, as you say, for some people, it seems like the impact is immediate. And that’s a, that’s a good one. I’m going to, I’m going to
Try to research that a little bit.
Bill Gasiamis (12:58)
That’s just a curious thing, isn’t it? to sort of understand the difference between one and the other. I’m not sure whether if we find out what the difference is, whether there’s say something that a stroke survivor listening can do or a caregiver can do in that situation, like what can be done? How can it be resolved? Maybe different steps that we need to take. I don’t know, but I’d love to know if there was a doctor or a neurologist or somebody who might be able to answer that.
Maybe we need to find someone.
Debra and Steve (13:29)
The doctor and the neurologist didn’t see it. Yeah, in the period before the stroke, they didn’t see it. While we were in the hospital when the stroke was happening, what they told us was at that point, there really wasn’t anything that could be done. The damage was done. So no intervention.
would lessen the damage. ⁓ again, we are far from doctors. So there’s a lot about that that we don’t know.
Bill Gasiamis (14:08)
understood. Deb, what part of your old identity was the hardest to let go?
Debra and Steve (14:14)
The Stanford professor, athlete, had really a lot of…
One hand is so difficult and independent person.
Bill Gasiamis (14:33)
Yeah.
Debra and Steve (14:34)
I am, skiing is so, I really love to ski and I am not, I am really not able to ski.
Bill Gasiamis (14:52)
understood so you were a professor, you were independent, you were physically active and all that stuff has had to stop happening at this point in time.
Debra and Steve (15:03)
I am the…striking…crossing…cycling…we are the…the…Sieve and I…
Bill Gasiamis (15:19)
You guys used to do something tandem.
Debra and Steve (15:21)
Yes,
a lot of time in the stroke across America. Well, so I think we’re sort of answering a couple of different questions at the same time. I think what Deb was saying was early on, kind of in that first three or four years, she really, you know, was giving up her role as a Stanford professor, giving up skiing, cycling, sailing, and just the…
not being a fully independent person needing so much help. That was really a lot of the struggle early on. Deb did return to a lot of those things. And that was a big part of the recovery process was realizing that she may not be able to do them the same way she used to, but there were a lot of different things. And then the cycling, Deb can’t ride a single bike, but we started riding a tandem. And that adaptation has proven
really important for us because it’s, it’s the thing we can now do together vigorously for long periods of time. That is really a, a sport that we can do together, ⁓ and love. And so that that’s really been a, an adaptive way to get back to something, not exactly the same way as she used to do it before the stroke, but in a way that is very meaningful.
Bill Gasiamis (16:46)
A lot of stroke survivors tend to have trouble with letting go of their old identity in that they feel like they need to completely pause it and put the whole identity aside rather than adapt it and change it so that you bring over the parts that you can and you make the most of them, know. And adaptive sport is the perfect way. You see a lot of people in the Paralympics becoming gold medalists after they’ve been injured.
a sports person before their injury and now all of a sudden they’re champion gold medal winning athletes because they decided to adapt and find another way to participate. And that’s what I love about what you guys just said. That’s still able to meet the needs of that identity, but in a slightly different way. What about you, Steve? Like when Deb goes through a difficult time and
she has a stroke and then you guys come home from hospital, you’re dealing with, ⁓ well, all the changes in your life as well because you become a care, while you guys describe it as a care partner, we’ll talk about that in a moment. But as a care partner, ⁓ how do you go about doing that without, and also at the same time, protecting a little bit of your needs and making sure that your needs are met? Because a lot of caregivers, care partners,
put all their needs aside and then they make it about the person who is ⁓ recovering from stroke. And then it leads to two people becoming unwell in different ways. One potentially emotionally, mentally, and the other person physically and all the other things that stroke does.
Debra and Steve (18:36)
Yeah, I mean, I think, um, Kyle was lucky in a couple of ways. One, a very close friend very early on who had been through similar situations said, you know, don’t forget, you’ve got to take care of yourself. If you don’t, you’re of no use to Deb. And so from the very beginning, I had people reminding me. I also had a ton of support in supporting Deb. Deb’s mom,
you know, came up and lived with us for six months. ⁓ So I could go back to work a lot sooner than I otherwise would have been able to go back to work. And I was fortunate that my job was fairly flexible. ⁓ But, you know, I loved my work and it meant I wasn’t focused on the caregiving or care partnering aspects of my role 24 seven. I got to go do something else independently. ⁓
We also had a lot of friends lend support as well. So, you know, I think I basically said, I’ve got to organize around supporting Deb, no question about it. But with guidance from friends, I sort of said, okay, my three priorities are going to be exercising, eating well, and sleeping well. And I really just set those out as my goals and I created ways to do that.
wall and that was sort of my physical health but also my mental health. And so, you know, sort of a problem solver and compartmentalizer by nature. So I guess maybe I was lucky that dividing up those roles was a little more natural to me than maybe it is for others. But it also took, you know, took deliberate choice to make sure not to let myself get sucked so far into the caring piece.
that I got in healthy and was lucky enough to have support so that I was able to not let that happen.
Bill Gasiamis (20:42)
Yeah, a lot of people feel guilt like this unnecessary guilt that, I can’t leave that person alone or I can’t ⁓ look after myself or take some time to myself because the other person needs me more than I need me. And that’s an interesting thing to experience people talk about in the caregiver role where they become so overwhelmed with the need to help support the other person that they… ⁓
that they have guilt any time that they step away and allocate some care to themselves. They see caring as a role that they play, not as a thing that they also need to practice.
Debra and Steve (21:29)
Yeah, yeah. Well, I think I was also lucky because Deb is so fiercely independent that she wanted as little help as she could possibly get away with. So ⁓ she was not the kind of stroke survivor that was sort of getting mad when I walked out of the room. It was like she was trying to kick me out of the room at times that I shouldn’t leave the room. And so, you know, again, ⁓
Deb was not a demanding, again, she just wanted as little help as she could possibly survive with. And that probably made it easier for me to not feel guilty because it’s like, well, that’s what she wants. She wants me to get out of here as long as she was safe.
Navigating Caregiving: Balancing Needs and SupportBill Gasiamis (22:16)
That mindset is a really useful one. It makes it possible for people to activate neural plasticity in the most ⁓ positive way. Because some people don’t realize that when it’s hard to do something and then the easier thing is to say, Steve, can you go get me that or can you do this for me? That neural plasticity is also activated, but in a negative way. ⁓
How does your recovery or your definition of recovery evolve over time? How did it change over time?
Debra and Steve (22:57)
⁓ How did how you think about recovery change over time? The realizing I had to build realizing I had the
of my identity and my life. The same past and writing a book. ⁓ Three, four years ago, four years after my stroke, really, well, ⁓
I am really, I am so committed to doing the best. No. I mean, you know, the first three or four years after Deb’s stroke, it really was all about trying to get back to who she used to be. Therapy, therapy, therapy, therapy, therapy, work hard, we’ll get back to life as we do it. And when Deb said,
when she lost tenure and said she wanted to write a book, I thought she was nuts. was like, you know, her speech wasn’t as good then as it is now. you I was at her side when she wrote her first academic book and that was brutal and she didn’t have aphasia. So I was like, I really thought she was nuts. But in hindsight, it really was that process of writing a book that got her to turn her knowledge about identity onto herself.
that really changed her view of what recovery meant. She sort of started to let go of recovery means getting back to everything I used to be doing and recovery means how do I rebuild an identity that I can feel good about? May not be the one I’d ideally want, but in the face of my disabilities, how do I rebuild that identity so that I can rebuild a good and purposeful and meaningful life? that really was an evolution for both of us.
over the five-year book writing period. I sometimes say it was the longest, cheapest therapy session we could have gotten because it really was that kind of therapeutic journey for us. And really a lot of the 25 people are in the book and the friends and colleagues are
in the book, really a lot of the colleagues. Deb was a social scientist and a researcher and she didn’t want to write a memoir. She wanted to write a research book. It has elements of a memoir because her story and our story is threaded throughout. But, you know, we learned so much from the interviews Deb did and
and I was not involved in the interviewing process, but having that diversity of stories and understanding some of the things that were very common for stroke survivors and other things that were so different from survivor to survivor helped her, helped us on our journey. So that book writing process had so many benefits.
Bill Gasiamis (26:49)
Very therapeutic, isn’t it? I went on a similar journey with my book when I wrote it and it was about, again, sharing other people’s stories, a little bit about mine, but sharing what we had in common, know, how did we all kind of work down this path of being able to say later on that stroke was the best thing that happened. Clearly not from a health perspective or from a ⁓ life, ⁓ you know.
the risk of life perspective, from a growth perspective, from this ability to be able to ⁓ look at the situation and try and work out like, is there any silver linings? What are the silver linings? And I get a sense that you guys are, your idea of the book was in a similar nature. Do you guys happen to have a copy of the book there?
Debra and Steve (27:39)
Yes. Of course. Don’t we have it everywhere?
Bill Gasiamis (27:42)
Yeah, I hope so. Identity theft, yep. I’ve got my copy here somewhere as well. Now, how come I didn’t bring it to the desk? One second, let me bring mine. Yes. There you go, there’s mine as well. I’ve got it here as well. So it’s a really lovely book. ⁓ Hard copy. ⁓
Debra and Steve (27:52)
Yeah.
You
must have the first edition not the second edition. Because we didn’t print the second edition in hard copy so it’s not a white cover can’t tell in the photo.
Bill Gasiamis (28:07)
okay, that’s why.
That is a blue cover.
Debra and Steve (28:17)
⁓ No, the paper cover on the front.
Bill Gasiamis (28:20)
The paper cover is a white cover.
Debra and Steve (28:22)
Yeah.
So that’s actually the first edition of the book that came out in 2019. And then the second edition just came out about two months ago. ⁓ And they are largely the same. But the second edition has a new preface that sort of, because we wrote that in 2019 and then had five years of working on Stroke Onward and learning more, we kind of brought our story up to 2020.
2024 and then two chapters at the end, one with some of the insights we’ve learned ⁓ kind of since writing the first book and a final chapter about what we think might need to change in the US healthcare system to better support stroke survivors. So we’ll have to get you a copy of the new one. Yeah.
Bill Gasiamis (29:13)
Yeah, why not? Signed copy, thank you very much. ⁓
Debra and Steve (29:15)
Yeah,
and the Julia Wieland. ⁓ It’s available on audiobook as well via, we were fortunate to be able to work with a great narrator named Julia Wieland, who’s an award winning audiobook narrator and actually has a business called Audio Brary that she started to really honor narrators and help promote the narrating of audio.
the narrators of audio books. ⁓ well, make sure you send us an email with the right mailing address and we’ll get you new copy.
Bill Gasiamis (29:55)
Yeah, that’d be lovely. So what I’ll do also is on the show notes, there’ll be all the links for where people can buy the book, right? We won’t need to talk about that. We’ll just ensure that they’re included on the show notes. I love the opening page in the book. ⁓ It’s written, I imagine, I believe that’s Deborah’s writing.
Debra and Steve (30:14)
⁓ yeah, yeah. yes, we have a signed copy of the first edition. Yeah.
Bill Gasiamis (30:20)
So it says true recovery is creating a life of meaning. Deborah Meyerson. Yeah, you guys sent me that quite a while ago. By the time we actually connected, so much time had passed. There was a lot of people involved in getting us together. And you know, I’m a stroke survivor too. So things slipped my mind and we began this conversation to try and get together literally, I think about a year earlier. So I love that I have this.
this copy and I’m looking forward to the updated one. ⁓ And it’s just great that one of the first things that Deb decided to do was write a book after all the troubles. Now your particular aphasia Deb, I’m wondering is that also, does that make it difficult for you to get words out of your head in your writing as well and typing?
Debra and Steve (31:13)
Yes, dictation is my dictation. It’s so hard. Speaking and writing isn’t the same.
Bill Gasiamis (31:31)
Speaking and writing is the same kind of level of difficulty.
Understanding Aphasia: A Spectrum of ExperiencesDebra and Steve (31:35)
Yeah, and the ⁓ other survivors in aphasia didn’t, Michael is. Want me to help? Yeah. Yeah, just that, and I think you know that there are so many different ways aphasia manifests itself and word finding is Deb’s challenge and it’s true whether she’s speaking or writing.
other people and a guy who rode cross country with us, Michael Obellomiya, he has fluent aphasia. So he speaks very fluently, but sometimes the words that come out aren’t what he means them to be. So the meaning of what he says, even though he says it very fluently, and he also has, I think, some degree of receptive aphasia so that he hears what people are saying, but sometimes the instruction or the detail doesn’t.
register for him and so aphasia can be very very different for different people.
Bill Gasiamis (32:37)
Yeah, there’s definitely a spectrum of aphasia. then sometimes I get to interview people really early on in their journey with aphasia and, ⁓ and speech is extremely difficult. And then later on, if I meet them again, a few years down the track, they have ⁓ an improvement somewhat. ⁓ perhaps there’s still some difficulty there, but they can often improve. ⁓ how much different was the
Debra and Steve (33:08)
15 years ago? I don’t know speech at all.
Bill Gasiamis (33:23)
No speech at all.
Debra and Steve (33:24)
Yeah. So Deb, it took several weeks for her to even be able to create sounds, maybe a month or two before she was sort of repeating words. ⁓ We have a great story of the first time Deb actually produced a word out of her brain. So it wasn’t an answer to a question or a therapy exercise.
but we were sitting around a table and a bunch of people who hadn’t had strokes were saying, what’s that? No, my family. Yeah, with your brother. No, our family. Yeah. Danny and… Okay, anyway. We were talking about, what was that movie where the guy trained a pig to…
do a dog show and what was the pig’s name and none of us could remember it and Deb just blurted out, babe. And it was like we started screaming and shouting because it was the first time that something that started as an original thought in her head actually got out. And that was like four months after her stroke. ⁓ A year after her stroke, it was really just isolated words.
⁓ She then did a clinical trial with something called melodic intonation, a kind of speech therapy that tries to tap into the other side of the brain, the singing side of the brain. And then I would say, you know, it’s been, mean, Deb’s speech is still getting better. So it’s just marginal improvement ⁓ over time.
Bill Gasiamis (35:10)
Yeah, Deb, what parts of Professor Deborah Meyerson remain and what’s entirely new now?
Debra and Steve (35:19)
⁓ The sharing knowledge and trading knowledge is the same. The new is how I do it. More constraints, I need help.
really help and I am so bad at asking. Really bad at asking. I have really a lot of phases of classes and
Ballroom classes, you know ballroom dancing. Yeah, no In the work we do Deb’s favorite thing to do is to teach so we’ve been invited, you know ⁓ Quite a few speech therapists in the United States are using identity theft as part of the curriculum in their aphasia course in the speech language pathology programs
Bill Gasiamis (36:28)
So
speaker-2 (36:28)
I’ll be.
Debra and Steve (36:48)
⁓ and we’ve been invited to visit and talk in classes. And Deb just loves that because it’s back to sharing knowledge. It’s a different kind of knowledge. It’s not about the work she did before her stroke, but it’s about the work and the life experience since. that is still, Professor Deb is still very much with us.
Bill Gasiamis (37:14)
Yeah, Professor Deb, fiercely independent, ⁓ doesn’t like to ask for help, ⁓ still prefers to kind of battle on and get things done as much as possible and suffer through the difficulty of that and then eventually ask for help. Do you kind of eventually?
Debra and Steve (37:32)
Yeah,
yeah, you skipped the part about correcting everything her husband says. That’s not quite exactly right.
Bill Gasiamis (37:40)
Well, that’s part of the course there, Steve. That’s exactly how it’s meant to be. And you should be better at being more accurate with what you have to say.
Debra and Steve (37:49)
I thought we’d be on the same side on this one.
Bill Gasiamis (37:53)
Sometimes, sometimes as a host, you know, I have to pick my hero and as a husband, I truly and totally get you. Deb, you describe experiencing cycles of grief. ⁓ What does that actually look like in a day-to-day life now? And I kind of get a sense of what cycles of grief would mean, but I’d love to hear your thoughts, your version of what that means.
Debra and Steve (38:22)
Every day, hour every day, small ways and big ways. Like one year ago,
Well, grandmothers. Can I correct you? It was 16 months ago. I’m going to get her back. Yeah. That’s what she does to me all the time. I am really happy. Make sure you explain. don’t know if they would have caught what it was that made you so happy. Grandmother. Sarah, Danny and Vivian.
I know, you don’t have to tell me. Just that we became grandparents for the first time. And Deb was ecstatic. I am so happy and also really frustrated.
And I don’t… crawling… no. You want me to help? I mean, you know, it’s sort of the day we got there, the day after the baby was born in New York and Deb was over the moon and the next morning…
We were walking back to the hospital and Deb was just spring-loaded to the pissed off position. She was getting mad at me for everything and anything and she was clearly in an unbelievably bad mood. And when I could finally get her to say what was wrong, it was that she had been playing all night and all morning all the ways in which she couldn’t be the grandmother she wanted to be. She couldn’t hold the baby. She couldn’t change a diaper. She couldn’t, you know,
spell the kids later on to give them a break by herself because she wouldn’t be able to chase no one is our grandson around. And so she had had really kind of gone into grieving about what she had lost just in the moment when she was experiencing the greatest joy in her life. And that’s an extreme example of a cycle of grief. And but it happens, as Deb was saying, it happens.
every hour, maybe three times an hour where you’re doing something that’s good, but then it reminds you of how you used to do that same thing. so, you know, when we talk about and write about cycles of grief, it’s the importance of giving yourself that space to grieve because it’s human. You lost something important and it’s human to let yourself acknowledge that.
But then how do you get through that and get back to the good part and not let that grief trap you? And that story from 16 months ago in New York is sort of the, that’s the poster child, but it happens in big ways and small ways every day, 10 times a day.
Bill Gasiamis (42:00)
Sadness is a thing that happens to people all the time and it’s about knowing how to navigate it. And I think people generally lack the tools to navigate sadness. They lack the tools to ⁓ deal with it, to know what to do with it. But I think there needs to be some kind of information put out there. Like you’re sad. Okay. So what does it mean? What can it mean? What can you do with it? How can you transform it? Is it okay to sit in it? ⁓
What have you guys learned about the need for sadness in healing?
Debra and Steve (42:35)
grief and sadness is so important and through the really once it’s an hour.
The Importance of Sadness in HealingFrom my perspective, I have learned a ton about sadness because I don’t have a good relationship with sadness. In most cases, it’s a great thing. just, you know, I’m a cup is nine tenths full person all the time and I tend to see the positive and that’s often very good. But it makes it really hard for me to live with other people’s sadness without trying to solve the problem.
Bill Gasiamis (43:12)
Hmm.
Debra and Steve (43:35)
And we actually came up with a phrase because sometimes if I get positive when Deb is sad, it just pisses her off. She doesn’t want to be talked out of it. And so we now talk about that dynamic as toxic positivity because, you know, most people think of positivity as such a positive thing. And yet
If someone needs to just live in sadness for a little while, positivity can be really toxic. And I think that’s been my greatest learning, maybe growth is sort of understanding that better. I still fall into the trap all the time. devil tell you there are way too many times when, you know, my attempts to cheer her up are not welcomed.
but at least I’m aware of it now. ⁓ And a little less likely to go there quite as quickly.
Bill Gasiamis (44:38)
Hmm. What I, what I noticed when people were coming to see me is that it was about them. They would come to see me about them. It wasn’t about me and what they made them do. What made what their instinct was, was to, if I felt better, they felt better and all they wanted to do was feel better and not be uncomfortable and not be struggling in their own ⁓ mind about what it’s like.
to visit Bill who’s unwell. And that was the interesting part. It’s like, no, no, I am feeling unwell. I am going to remain feeling unwell. And your problem with it is your problem with it. You need to deal with how you feel about me feeling unwell. And I appreciate the empathy, the sympathy, the care I do. But actually, when you visit me, it shouldn’t be about you. It shouldn’t be, I’m gonna go and visit Bill.
and I hope he’s well because I don’t want to experience him being unwell. It should be about you’re just gonna go visit Bill however you find him, whatever state he’s in, whatever condition he’s in, and therefore ⁓ that I think creates an opportunity for growth and that person needs to consider how they need to grow to adapt to this new relationship that they have with Bill.
⁓ which is based now around Bill’s challenges, Bill’s problems, Bill’s surgery, Bill’s pos- the possibility that Bill won’t be around in a few months or whatever. Do you know what I mean? So it’s like, ⁓ all, all the, ⁓ the well-meaning part of it is well received, but then it’s about everyone has a, has to step up and experience growth in this new relationship that we have. And some people are not willing to do it and then they don’t come at all.
They’re the people who I find other most interesting and maybe ⁓ the most follow their instincts better than everybody where they might go, well, I’m going to go and say, Bill, he’s all messed up. ⁓ I don’t know how I’m going to deal with that. can’t cope with that. And rather than going there and being a party pooper or not knowing what to say or saying the wrong thing, maybe I won’t go at all. And they kind of create space.
Debra and Steve (46:58)
So.
Bill Gasiamis (47:01)
for your recovery to happen without you having to experience their version of it.
Debra and Steve (47:09)
Yeah, that’s it. That’s really interesting to hear you talk about it that way. And I would say very generous to hear you talk about it that way, because most of the time when we’ve heard people talk about it’s that because people talk about the fact that because other people don’t know what to say, they don’t say anything or they don’t come.
But that then creates an isolation that’s unwanted. You’re talking about it as a, maybe that’s a good thing. They’re giving me space, given their skill or willingness to deal with it. Whereas I think a lot of people feel that when people just disappear because they don’t know what to say, that’s a lack of caring and a lack of engagement. ⁓
interesting to hear your take on it. think there’s a close cousin to this that Deb felt very intensely is that some people in the attempt to be understanding and supportive really took on an air of pity. And that there were some people that
that we had to ask not to come if they couldn’t change how they were relating to Deb because it was such a like, ⁓ you poor thing that was incredibly disempowering. Whereas there were other people who had the skill to be empathetic in a supportive way.
And so, I mean, in some ways, I think we’ve learned a lot, not that we necessarily do it right all the time, but we’ve learned a lot about how to try to support other people by what has and hasn’t worked in supporting us.
Bill Gasiamis (49:20)
Yeah, it’s a deeply interesting conversation because people get offended when they need people the most that don’t turn up. And I, and I understand that part of it as well. And then in, in time, ⁓ I was, I was like that at the beginning, but then in time, I kind of realized that, okay, this is actually not about me. It’s about them. They’re the ones struggling with my condition. They don’t know how to be. And maybe it’s okay for them.
not to be around me because I wouldn’t be able to deal with their energy anyway. ⁓ yeah. So Deb, what made you turn to advocacy? What made you decide that you’re gonna be an advocate in this space?
Finding Purpose Through AdvocacyDebra and Steve (50:08)
⁓
Feeling purpose and meaning. Survivors? Yes. And caregivers? Yes. Really a lot of risky is really… ⁓
medical, medical. Yeah. I mean, I I, I know what Deb is trying to say, which is, you know, once she got past the life threatening part and kind of on her way and was relatively independent, she was drawn back to saying, I want to live a life that has meaning and purpose. And so how
in this new state, can I do that? And Deb, as I’m sure you know by now, doesn’t think small, she thinks big. And so what she’s saying is, yes, I want to help other people, other survivors, other care partners, but really we need a better system. Like I can only help so many people by myself, but if we can actually advocate for a better healthcare system in the United States that treats stroke differently.
then maybe we can make a difference for a lot of people. that’s kind of the journey we’re on now. the survivors and caregivers, advocacy is so important to California or even the state.
Building the Stroke Onward FoundationBill Gasiamis (52:05)
Yeah, advocacy is very important ⁓ and I love that I Love that you become an advocate and then you find your purpose and your meaning you don’t set out to Find your purpose and your meaning and then think what should I do to find my purpose of my meaning it tends to catch Catch go around the other way. I’m gonna go and help other people and then all of a sudden it’s like, ⁓ this is really meaningful I’m enjoying doing this and raising awareness about that condition
that we’ve experienced and the challenges that we are facing. And wow, why don’t we make a change on a as big a scale as possible? Why don’t we try to influence the system to take a different approach because it’s maybe missing something that we see because we’re in a different, we have a different perspective than the people who are providing the healthcare, even though they’ve got a very big kind of, you know, their purpose is to help people as well.
their perspective comes from a different angle and lived experience, I think is tremendously important and ⁓ missed and it’s a big missed opportunity if ⁓ lived experience is not part of that defining of how to offer services to people experiencing or recovering a stroke or how to support people after they’ve experienced or recovering from a stroke. ⁓ I love that. So that
led you guys to develop the foundation, stroke onward. it a foundation? it a, tell us a little bit about stroke onward.
Debra and Steve (53:42)
In US jargon, we’d call it a nonprofit. Generally, foundations are entities that have a big endowment and give money away. We wish we had a big endowment, but we don’t. We need to find people who want to support our work and make donations to our nonprofit. And yeah, we now have a small team. ⁓ Deb and I
given our age, given that we’re grandparents, we were hoping not to be 24 sevens. So needed people who were good at building nonprofits who were a little earlier in their careers. And we’ve got a small team, a CEO, a program manager and a couple of part-time people ⁓ who are running a bunch of programs. We’re trying to stay focused. We’re trying to build community with stroke survivors, care partners, medical professionals.
We’ve got an online community called the Stroke Onward Community Circle that we just launched earlier this year. We’re hosting events, ⁓ some in medical settings that we call Stroke Care Onward to really talk with both ⁓ a diverse group of medical professionals, as well as survivors and care partners about what’s missing in the system and how it can be improved. ⁓ And then a program that we call the Stroke Monologues, which is sort of a
a TEDx for stroke survivors where survivors, care partners, medical professionals can really tell their story of the emotional journey in recovery. And we want to use all of that to sort of build a platform to drive system change. That’s kind of what we’re trying to build with Stroke Onward.
Bill Gasiamis (55:32)
I love that. I love that TEDx component of it. ⁓ People actually get to talk about it and put out stories and content in that way as well.
Debra and Steve (55:35)
Yeah.
⁓
Yeah. Denver, Pittsburgh, ⁓ Boston, and Oakland and San Francisco. We’ve now done six shows of the stroke monologues and a big part about our work in the coming year.
is really trying to think about how that might scale. can we, you know, it’s a very time consuming and therefore expensive to host events all the time. So how we can work with other organizations and leverage the idea ⁓ so that more people can get on stage and tell their story. ⁓ Also how we capture those stories on video and how we can do it virtually. So that’s a big part of what the team is thinking about is, you know, how do we
Cause you know, at the end of the day, we can only do as much as we can raise the money to hire the people to do. So, that, that developing a strategy that hopefully can scale and track the resources that it takes to make more impact. That’s kind of job one for 2026.
Bill Gasiamis (57:05)
Yeah, I love it. Lucky you haven’t got enough jobs. That’s a good job to have though, right? ⁓ So if you were sitting, if you guys were both sitting with a couple just beginning this journey, what would you want them to know? What’s the first thing that you would want them to know?
Debra Meyerson – Advice for New Stroke SurvivorsDebra and Steve (57:12)
Yeah.
Don’t have a stroke.
Bill Gasiamis (57:28)
Profound.
Debra and Steve (57:29)
Yeah. Yeah. I
mean, I think, you know, it’s a journey and think of it as a journey and try to get as much as much of your capabilities back as you can. But don’t think of recovery as just that. It’s a much broader journey than that. It’s rebuilding identity. It’s finding ways to adapt.
to do the things you love to do, to do the things that bring you meaning and purpose and create that journey for yourself. Nobody else’s journey is gonna be the right model for yours. So give yourself the time, space, learn from others, but learn from what’s in your heart as to the life you wanna build with the cards you’ve been dealt.
Bill Gasiamis (58:25)
Yeah. What are some of the practices or habits that have helped you guys as a couple, as partners stay connected?
Debra and Steve (58:34)
⁓ It’s, it’s hard. mean, and we’ve gone through phases, ⁓ where I think, you know, in some ways early on after the stroke, we may have been as close or closer than we’ve ever been. as Deb got better ironically and wanted to do more.
Bill Gasiamis (58:39)
You
Debra and Steve (59:01)
that created a different kind of stress for us. ⁓ stress is the key. No, stress is not the beauty. I had so much stress. Yeah. And sometimes I say stress is a function of the gap between aspiration and capability and
while Deb’s capabilities keep growing, I think maybe her aspirations grow faster. And the question then says, how do you fill that gap? And so I think Deb struggles with that. And then for me, a big struggle is, so how much do I change my life to support Deb in filling that gap versus the things I might want to do that I still can do? So.
You know, when Deb decided to write a book, I really wasn’t willing to give up my other nonprofit career, which was very meaningful to me. And I felt like I was midstream, but we had to find other ways in addition to my help nights and weekends to get Deb help so she could write the book she wanted to write. Whereas when the book came out and we decided to create Stroke Onward, that was a different point in time. And I was sort of willing to.
cut back from that career to come build something with Deb. So I think again, we hate to give advice because everybody’s journey is different, but things change and go with that change. Don’t get locked into a view of what the balance in relationship should be. Recognize that that’s gonna be a never ending process of
creating and recreating and recreating a balance that works for both of us.
Bill Gasiamis (1:01:04)
Hmm. What’s interesting. Some of the things that I’ve gone through with my wife is that I’ve kind of understood that she can’t be all things that I needed to be for me. And I can’t be all things that she needs me to be for her. And we need to seek that things where we lack the ability to deal to provide those things for the other person. The other person needs to find a way to accomplish those tasks needs, have those needs met, whatever with
in some other way. for example, my whole thing was feeling sad and I needed someone to talk me through it and my wife wasn’t skilled enough to talk me through it, well, it would be necessary for me to seek that support from somebody else, a counselor, a coach, whomever, rather than trying to get blood out of a stone, somebody who doesn’t have the capability to support me in that way. Why would I expect that person to…
all of a sudden step up while they’re doing all these other things to get through the difficult time that we were going on to that we’re dealing with. So that was kind of my learning. was like, I can’t expect my wife to be everything I need from her. There’ll be other people who can do that. Who are they? And that’s why the podcast happened because I’ve been talking about this since 2012 and since 2012 and
⁓ well, yeah, that’s 2012 as well. 2012 anyhow. ⁓ I’ve been talking about it since.
Debra and Steve (1:02:41)
You’re both our roles. You’re saying it and then correcting yourself.
Bill Gasiamis (1:02:45)
Yeah. Yeah. Yeah. I have a part of me that corrects me as I go along in life. Yeah. Sometimes I don’t listen to it. ⁓ but today was a good one. The thing about it is I have a need, a deep need to talk about it all the time. That’s why I’ve done nearly 400 episodes and those 400 episodes are therapy sessions. Every time I sit down and have a conversation with somebody and I, and even though my wife has a
I, ⁓ masters in psychology. I wouldn’t put her through 400 conversations about my stroke every single day or every second day. You know, it’s not fair because it’s not her role. I, ⁓ I talked to her about the things that we can discuss that are important, for the relationship and for how we go about our business as a couple. But then there’s those other things that.
she can’t offer her perspective because only stroke survivors know how to do that. And I would never want her to know how to ⁓ relate to me having had a stroke and having the deficits that I have and how it feels to be in my body. I would never want her to be able to relate to me. So ⁓ it’s, that’s kind of how I see, you know, the couple dynamic has to play out. have to just honor
the things that each of us can bring to the table and then go elsewhere to ⁓ have our needs met if there’s needs that are left unmet.
Debra and Steve (1:04:23)
Yeah. Really. Well, it’s good to know that if this is a ⁓ helpful therapy session for you, you won’t mind if we send you a bill. Yeah.
Bill Gasiamis (1:04:32)
Yeah. Yeah. Send it along with the book. Just put it in the front cover and then, and then I’ll make a payment. ⁓ Well guys, it’s really lovely to meet you in person and have a conversation with you. Have the opportunity to share your mission as well. Raise awareness about the book, raise awareness about stroke onward. I love your work. ⁓ And I wish you all the best with all of your
endeavors, personal, professional, not for profit. And yeah, I just love the way that this is another example of how you can respond to stroke as individuals and then also as a couple.
Debra and Steve (1:05:18)
Yeah, thank you. Well, and we hope you’ll join our online community and that includes the opportunity to do live events. yes. And maybe there are some additional therapy sessions. Yes. On our platform and chat with people and well, all over the place. So yeah, please join us.
Bill Gasiamis (1:05:43)
That sounds like a plan. Well, that’s a wrap on my conversation with Deborah and Steve. If Deborah’s slow fall off a cliff description resonated with you, leave a comment and tell me what part of your recovery has been the hardest to explain to other people. And if you’re a care partner, I’d love to hear what you needed most early on. You’ll find the links to Deborah and Steve’s work, their book, identity theft and their nonprofit stroke onward in the show notes.
And if you’d like to go deeper with me, grab my book, The Unexpected Way That a Stroke Became the Best Thing That Happened via recoveryafterstroke.com/book. Also, you can support the podcast on Patreon by going to patreon.com/recoveryafterstroke. Thank you for being here. And remember, you’re not alone in this journey.
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed. All content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gassiamus.
Content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitator.
program based on our content. you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional. If you are experiencing a health emergency or think you might be, call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department. Medical information changes constantly. While we aim to provide current quality information in our content, we do not provide any guarantees and assume no legal liability or responsibility for the accuracy,
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The post Debra Meyerson and the “Slow Fall Off a Cliff”: Aphasia After Stroke, Identity, and What Recovery Really Means appeared first on Recovery After Stroke.
Stroke etanercept injection 18 months on: what lasted, what changed, and what Andrew learned after the PESTO trialSome stroke survivors are told a version of the same sentence in hospital: “After three months, what you have is what you’ll have.”
Andrew Stops didn’t buy it, not because he was naïve, but because he needed a reason to keep showing up for rehab when nobody could give him a straight answer about what “recovery” would look like.
Four years after his ischemic stroke, and 18 months after a stroke etanercept injection, Andrew is back to share what improved quickly, what continued to evolve, and how he made peace with research results that didn’t match his lived experience.
The question so many survivors are really askingWhen people reach out about perispinal etanercept (often discussed as “etanercept after stroke”), they’re rarely asking for a science lecture.
They’re asking:
- Will this help me get my life back?
- Will I be the person it works for… or the person it doesn’t?
- How do I decide without being misled by hype, fear, or my own desperation?
Those questions are valid. They’re also heavy, because the stakes are high: the treatment is expensive, travel can be intense, and the emotional cost of hoping—then not getting results—can be brutal.
Andrew’s baseline: what his stroke took at the startAndrew’s stroke most impacted his right side. Early on, he had:
- No use of his right arm or hand
- A weaker right leg
- Right foot drop
- A slight speech impediment
He worked hard to walk again quickly, using practical supports early (including an elastic extension on his shoe to help keep his foot up). But his bigger mission was clear: find ways to complement rehab—because medical staff couldn’t give him a timeline, and he felt a “lack of hope” from their perspective.
That’s a common moment for survivors: you’re doing the work, but you also want a map.
The “complement” phase: why hyperbaric helped, even without perfect measurementBefore etanercept entered the picture, Andrew leaned on what had helped him before: hyperbaric oxygen therapy (HBOT). He had a history of a brain tumor and had used hyperbaric previously for healing, so he rented a soft-shell chamber at home for three months and went in daily for 90 minutes.
Andrew was careful with his claims: he couldn’t measure physiological changes in real time at home. But he could measure something important, his ability to cope.
HBOT became a daily “warm cocoon” where he could breathe oxygen-rich air and calm his nervous system. For him, that mental-health benefit wasn’t a side note. It was fuel.
And when you’re rebuilding your life after stroke, fuel matters.
The etanercept decision: hope, uncertainty, and the reality of the “roll the dice” problemAndrew discovered perispinal etanercept through a media story about Dr. Tobinick’s clinic, and after about a year, decided he needed to know he’d tried everything he reasonably could.
He crowdfunded to afford the trip and treatment.
That detail matters because it introduces the single biggest ethical challenge around treatments like this:
Even if you try to stay balanced, it’s hard not to hang hope on something that costs time, money, energy, and pride.
Andrew doesn’t tell people to go. In fact, when people contact him now (he’s spoken to more than 50), he’s careful:
- He explains it worked for him, but might not work for them
- He encourages going without expectation
- He frames it as “knowing you tried everything,” not a guaranteed fix
That’s responsible guidance from someone who understands how fragile hope can become when it’s under financial pressure.
What changed fast (and what stayed improved 18 months later)Andrew’s report of early changes is striking not because it proves causality, but because it describes specific, functional shifts:
Cognitive fatigue and sensory overloadHe noticed cognitive fatigue dial down immediately. He still experiences it, but it takes far more to trigger now.
The most vivid example: on the way to the clinic, he used an eye mask, noise-cancelling headphones, and had medication ready for overload. On the return flight 24 hours later, he didn’t need any of it. He stood in the airport like any other traveler.
Pain and crampingA persistent cramp in his right calf eased significantly.
Emotional regulationHe noticed improvement in emotional control, something many stroke survivors quietly struggle with and often feel ashamed about.
Hand function and fine motor controlHis right hand went from feeling like it moved “in molasses” to loosening up.
And here’s where the “18 months on” part becomes powerful: Andrew recently discovered he could play scales on his clarinet again, covering holes with independent finger movement, something he hadn’t been able to do since the stroke.
That’s not framed as: “etanercept did this.” It’s framed as: recovery kept unfolding.
“Your stroke recovery doesn’t stop. There’s no end date.”
The PESTO trial: when research challenges your storyThen came the PESTO trial results, which (as discussed in your episode) reported that etanercept was not more effective than placebo in the studied group.
This is where Andrew’s story gets even more human.
He didn’t just shrug it off.
He described feeling guilt, even fraudulence, because he couldn’t reconcile the research headline with his lived experience.
That response is deeply relatable: when something helps you, and others don’t get the same outcome, it can feel like survivor’s guilt, especially when people have spent enormous money and emotional energy.
A careful theory: the blood–brain barrier questionIn your conversation, Bill raises a hypothesis, not a proven conclusion that deserves careful attention:
If etanercept struggles to cross the blood–brain barrier in general, could certain people have a more permeable barrier due to factors like stroke, surgery, or radiation therapy (which Andrew had)?
Andrew himself wonders if radiation could be part of his “why.”
This isn’t a sales pitch. It’s a research direction, a possible explanation for why outcomes might vary so dramatically between people.
If that line of thinking ever becomes clinically actionable, it could change the whole decision-making process for survivors, because the question would shift from “roll the dice” to “are you likely to be a candidate?”
What a stroke survivor can take from this without being sold toIf you’re reading this because you’re considering a stroke etanercept injection, here are the grounded takeaways from Andrew’s 18-month update:
- Recovery can continue for years. Don’t let a timeline kill your momentum.
- Treatments don’t have to be “proven” to feel meaningful, but meaning isn’t the same as certainty.
- Hope needs guardrails. Don’t stake your whole future on one intervention.
- If you pursue something controversial, protect your mindset. Go in informed, realistic, and supported.
- You deserve respect, not ridicule, for wanting your life back.
If you want ongoing encouragement and tools to navigate recovery (and the emotional complexity that comes with it), Bill’s work is built for that:
- Book: recoveryafterstroke.com/book
- Patreon: patreon.com/recoveryafterstroke
This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
Andrew’s 18-Month Etanercept Update: Fatigue, Function, and What the Research Says18 months later, Andrew shares what improved after etanercept fatigue, function, and the tough questions raised by the PESTO trial.
Highlights:
00:00 Introduction and Background
06:15 Exploring Treatment Options
08:59 Stroke Etanercept Injection And It’s Impact
12:14 Research Findings and Controversies
17:59 Conversations with Other Survivors
23:26 Reflections on Treatment and Guilt
Transcript:
Stroke Etanercept Injection – Introduction and BackgroundBill Gasiamis (00:00)
Hey again there everyone. Welcome back to the Recovery After Stroke podcast. Before we get started, a quick thank you to everyone who supports this podcast on Patreon. Your support helps cover hosting costs and after more than 10 years of doing this largely solo, it’s what helps me keep showing up for stroke survivors who need hope and real conversations. A huge shout out to everyone who comments on YouTube, leaves reviews on Spotify and Apple podcasts.
has bought my book, The Unexpected Way That a Stroke Became the Best Thing That Happened, and even the folks who don’t skip the ads, thank you. All of it helps this podcast reach the people who are searching for answers late at night when recovery feels heavy. Now today’s episode is a follow-up many of you have asked for. Andrew Stopps is back, and we’re talking about stroke and etanusept injections 18 months on.
We’ll unpack what changed for him, what’s continued to improve and how he processed the PESTO trial results that found Etanercapt wasn’t more effective than the placebo. If you’re considering this treatment or you’re trying to make sense of conflicting stories and research, this conversation will help you think more clearly without hype and without fear. All right, let’s get into it.
Bill Gasiamis (01:17)
Andrew stops. Welcome back.
Andrew (01:20)
Thank you for having me. It’s good to
back.
Bill Gasiamis (01:22)
It is so good to have you back. The last time we spoke, was March 26, 2024. At least that’s the date that I uploaded the podcast
Andrew (01:30)
it would
have been before that even, probably a couple of weeks before that.
Bill Gasiamis (01:34)
Yeah, something like that. So a good 18 months since we last spoke. And the original reason why you reached out and kind of we connected was I think because you had found my podcast, I had maybe had a couple of conversations about Etanercept like, and I had no idea what it was, how it worked, if it worked. And then you reached out and said, hey, I’ve had this injection. I’ve tried it. Why don’t connect about it?
Andrew (01:36)
So a good 18 months.
Bill Gasiamis (02:03)
And then we connected and we had a really great conversation and that interview has had like 19 and a half thousand views since then. And then what’s been happening a lot about that interview is heaps of people have reached out to me to say, can I speak with Andrew? Can you connect me with Andrew?
Andrew (02:23)
And he’s people reached out to me because of that. And also they found me on the interwebs somehow and contacted me that way. So I’ve probably been spoken now, well over 50 people.
Bill Gasiamis (02:40)
Wow, man, that is fascinating. So and what I love about it is that we put out information. What we hope is we hope people make a more informed decision. Right. That’s kind of the idea is like, how do I help people make people make a more informed decision, especially when I haven’t experienced something and I’m trying to get across the benefits or the pitfalls or, you know, what to avoid on a product. It’s just impossible. But
You were very gracious as well as you. I’ve interviewed, by the way, a bunch of other about Etanercept. And one of them was Dwayne Simple. Dwayne also gets a few people who I sent to him that are in Canada because Dwayne is in Canada. He’s had Etanercept and it worked out for And then I’ve spoken to another lady from Australia, Karen.
who also a shot or two of Etanercept and had positive results. But of course, Etanercept is extremely controversial. And one of the challenges with it is that it doesn’t work for everybody. And there’s only one way of knowing if it’s going to work is to go and get the injection to pay the money and then to kind of roll the dice and see what happens. Now, that’s what we’re going to talk about today. But before we talk about the new
Andrew (03:37)
Mm-hmm.
Mm-hmm.
Bill Gasiamis (03:58)
research that has come out, the PESTO trial research. Before we talk about that, we’ll briefly talk about your condition, where you started. We’ll have a real short version of that, where you started, what happened, and then how you ended up overseas experiencing Dr. Tobinick’s procedure, and then update us on what happened in the last 18 months.
Andrew (04:17)
Okay, so I had my stroke exactly four years ago last Thursday. So I’m a four year old stroke survivor now. And my most damage was done to my right side. So I had no use of my right arm or hand at all. My right leg was weak, but it was okay. But my right foot just fell. I had a slight speech impediment.
But otherwise physically that was really it for the stroke. And I worked really hard to get myself walking again as quickly as I could. And so when I got home I could walk but I’d had an elastic extension on my shoe to help keep my foot up. And I…
From that moment, I was looking for ways to complement my rehab to help me recover fully from the stroke because the doctors and people in the hospital, no one could say to me like how long, how I was going to be, how much recovery, what I could expect, like anything. was just everyone’s unique. And I understand that, but there was a ⁓ lack of like hope from their perspective.
So the first thing we did when we got me home was I’d heard, well, I knew that hyperbaric chambers helped healing. And I knew that because I had a, previously had a brain tumor and I used hyperbaric to help me heal from that. It was really, really good. So we hired one, we rented one for three months and had a soft shell chamber at home, which I went in every day.
for 90 minutes and it was fantastic. I can’t say how, if that physiologically helped because I don’t have access to an MRI at home or anything. Yeah, I can’t measure it, but it did wonders for my mental health. Like it was brilliant because for an hour and half every day, I got to sit in this nice warm cocoon shell, they do not over me.
Bill Gasiamis (06:01)
You can’t measure it.
Exploring Treatment OptionsAndrew (06:15)
and listen to really nice music and breathe in almost, you know, pure, very heavily oxygenated air. And so it was like meditation for an hour and half. And the hour and a half went just like that. It was so quick. And I was really sad to have to, you know, give it up after three months. But yeah, it very much helped with my mental health during that time. And I mean,
It’s hard to say if it helped me physically, but I certainly got back my ability to move my foot. My arm was another beast though, and that took a long time. That took about two months before it even moved slightly before I could just, you know, move it up and down. So getting back the function of my arm was a longer process. So I kept researching online and finding, you know, other ways that I could help myself to recover.
That’s when came across the 60 minutes interview with Dr. Tobinick and the clinic and the lady from Australia.
Bill Gasiamis (07:17)
Which
by the way, 60 minutes has taken down. You can only find that on Dr. Tobinick’s YouTube channel now. Yeah, right. So that’s interesting just as a thing that I observed that people might find interesting as well to hear. It doesn’t mean anything perhaps.
Andrew (07:24)
really? Interesting.
Yeah, I mean, yeah, can be anything anyway, so I found that I watched it. I was really really inspired and I thought well I’ve got to know that I have tried everything like if this is how I’m going to be and this was After one year and I was told that you know after three months or That pretty much what I had after three months was was how I was going to be so
I figured after one year, I’ve got to try everything. And so I crowdfunded and had about 30 or 1000.
Bill Gasiamis (08:13)
You raised how much?
US, New Zealand dollars.
Andrew (08:22)
Yes, so that was to that was to fly that was for the flights accommodation the shots like the whole the whole package And yeah, and we flew out in in February Last last year 2025 Was it last year? can’t remember
Bill Gasiamis (08:37)
I did
20, 24, 18 months ago.
Stroke Etanercept Injection And It’s ImpactAndrew (08:40)
2024. And yeah, had the shot and it was it was amazing how fast I found things start to to wake up and recover. By then I had had more movement in my arm, but my hand was very sluggish. And I really didn’t have any fine motor control at all.
⁓ So yeah, that was the 32nd story of Andrew’s stroke recovery.
Bill Gasiamis (09:04)
Yeah, that’s a cool story. So we did a full deeper dive interview for Andrew’s story, an hour and 18 minutes worth of conversation. And the link to the original interview with Andrew about Etanercept will be available in the show notes, right, and in the YouTube description of this video. So anyone who wants to go back and watch that can do that as well. Now, like I said, it’s had 19,000 views.
It’s 521 likes and it has just a ton of comments, just a ton, a ton of comments. Now, one other thing that has happened since then is I haven’t been able to find people who are willing to talk about Etanercept who did not have positive results when they went to Dr. Tobinick’s clinic. just, people don’t want to be interviewed if it’s about that. It seems as though it’s been really hard, right? So.
I can’t give this balanced view of here’s somebody who has had good results, here’s somebody who hasn’t had results. They comment on the YouTube comments and they send me emails about it, but they don’t really tell me whether or not they will join me on the podcast to discuss it properly. recently the Griffith University study came out about Perispinal Etanercept and it had some positive results. It didn’t find
that it was able to help restore certain functions, et cetera, but it did have an impact on pain relief for some people. Now, after that, the highly anticipated study was the one from the Flory Institute here in Australia called the PESTO trial. I’ll share my screen and I’ll put it on the screen while we chat about it, right? We’re gonna chat about what if.
what it found, Andrew, just so that we can bring people up to speed so they can just hear a conversation about it.
Bill Gasiamis (10:50)
We’ll be back with more of Andrew’s story in just a moment, but if you’re listening right now and you feel stuck, want you to hear this clearly. Recovery isn’t a three month window. It’s not even a one year window. Your brain can keep adapting for a long time. And the real challenge is learning how to keep hope without putting all your hope in one thing. In the second half of this episode, Andrew shares what actually lasted 18 months on. What still improved over the time.
And we’ll talk about the biggest question. If the PESTO trial says the Etanercept shouldn’t work better than the placebo, then why do some people still report a night and day difference?
Bill Gasiamis (11:30)
OK, so this is the PESO trial. Now, I interviewed recently ⁓ Vincent Thijs the doctor who headed the study. but the Flory Institute is basically
reporting on his findings. He has presented these findings at stroke conferences around the world. And what was interesting was that this study started in, I think, 2018. And then because of COVID had to be paused, amongst other things. And then finally, all the research was reviewed and it became available at the beginning of 2025. And then it’s been out probably for about seven or eight months now.
Stroke Etanercept Injection Research Findings and ControversiesAnd what they found was that the, and they’re being a little bit provocative here calling it a miracle cure, but what they found was that a perispinal etanusept, the arthritis drug, ⁓ was not effective in treating people that were experiencing symptoms because of a stroke anymore.
than the placebo. So what they found was that the people on the placebo who ⁓ received the placebo, 56 % of them had a positive result from the placebo as opposed to less than 56 % of people who were actually using the Etanusept. And the reason being, they say, is because the drug doesn’t have the capability of crossing
the blood-brain barrier to get to where the ⁓ inflammation is and to actually ⁓ decrease the inflammation. In arthritis, for example, the inflammation is in the joints, which are not part of the brain. There is no blood-brain barrier or some barrier that stops the atanasip from going there. And therefore, when people get injected to experience relief from ⁓
the symptoms of rheumatoid arthritis, they do experience that relief sometimes almost immediately, et cetera. And ⁓ as a result of that, the guys published the study and basically concluded that it is not effective and more research needs to be done to understand why or why not it works for some people and why it doesn’t for others. And I’ve had a couple of
kind of ideas since then. And I’ll stop sharing my screen now because we can go back to just you and I, Andrew. And I’ve had some ideas as to how do I then talk to people about that, right? So I know I’ve interviewed Andrew, five other people that I’ve interviewed at least who said they had a positive result. And I should tell people there’s people who had a positive result, right? And then there’s the other people on the other side of the spectrum, which are really hostile saying like, it’s snake oil.
My idea is that even if you go there and you receive Etanercept and it works when it’s not meant to and it’s just a placebo working because you’ve got high expectations of it working. You need it to work. You’ve invested $30,000. You you’ve traveled half a way across the world. Even if it works and it didn’t cross your blood brain barrier, to me, that’s a tick, right? That’s like.
It worked fantastic. People improve their function. They got their life back. The body is very powerful. It can achieve amazing things. Who cares how it did that? A B, your blood brain barrier might be compromised. So there is a thing called leaky gut. We’ve heard about leaky gut. It is a compromised gut barrier which allows toxins to escape the gut and get into the blood.
and causes a lot of autoimmune conditions. The same thing is possible for the blood brain barrier. If you’ve got a really compromised blood brain barrier because you’ve had a stroke or you’ve had brain surgery or something like that, it’s possible.
Andrew (15:47)
we’ve had
radiation therapy, which I have.
Bill Gasiamis (15:50)
or you’ve had radiation therapy because of previous medical conditions, et cetera, then there could be a more permeable blood brain barrier, which enables the Etanercept to actually penetrate it and get to the root cause of the stroke inflammation or the root location of the stroke inflammation. And therefore, some people through no… ⁓
you know, through no fault of their own, I either have a really healthy blood brain barrier and Etanercept can’t cross it or have a compromised blood brain barrier and Etanercept can cross it. And therefore they experience positive results. But the issue then is how do we know? How can we work that out for people, you know, before they go and drop 30 grand on a treatment that they may not get a result for. Now.
That’s my thinking about it, right? But I still send people to you and I still send you these studies as they come up, just so that I can say, Andrew, I need your feedback. I need you to talk to me. I need you to tell me something. Like, where do you stand on all of this? I’m going to keep sending people to you who reach out to me to speak to Andrew because they’re interested. So like, how does that conversation go in your head and then with the people that you connect with?
Andrew (17:09)
Okay, so having having been a teacher, career teacher, I’m really careful of what I advise people like I would be really careful what I advise my students. So I never say to people, yes, you’ve to do it because it worked for me. God, do do it, do drop it again. I never ever say that I tried to give them the balance for you. And and even though it worked for me, I make sure it’s I’m very clear that they understand that it worked for me, but it might not work for you.
Conversations with Other SurvivorsSo you’ve got to go like I did and don’t go with any expectations. Just go, just know that you’ve tried everything you can to help your recovery. That’s all. And so that’s how that conversation usually goes. They ask me lots of questions about what it feels like, what the place is like, what Dr. Tobinick was like.
just all the sort of the mechanical questions around it. But generally, it’s, I don’t know whether I should go. And it’s also, I want to go, but my family don’t want to go. And I can’t go because they don’t support me, because they think it’s snake oil.
Bill Gasiamis (18:18)
Okay, that’s an interesting conversation. So I often try and advise stroke survivors to be careful who they share information with. Not saying that you shouldn’t share information with your loved ones and your family members after a stroke. What I’m saying is like, even in situations where things are not that critical, where you’re not talking about spending 30 grand, I’m just talking about people who have the experience sometimes Andrew where they say, oh, I wanna try this meditation thing, you know, and.
somebody hasn’t meditated before, thinks it’s woo woo and says, don’t worry about that stuff. What do you wanna be? Like a hippie or something? There’s those types of people who hang out in our world who do intervene with things that we’re curious about and we wanna kind of shift away from perhaps old habits to new habits, especially around alcohol as well. I found that people would go, aren’t you gonna have one drink?
Like what’s the point of going out if we can’t have a drink? It’s like, dude, like I’m a completely different version of myself. I’ve had a stroke, I can’t drink. But understanding how to deal with people like that is a bit of an issue. So then you’ve spoken to about 50 people who have either gone or not gone. Like have some people gone and contacted you and said it worked and some people gone and contacted you and said it hasn’t worked.
Andrew (19:40)
Yes. Yep. And I’ve. The contact normally starts to go quiet once they actually go, whether it works or doesn’t work. And I usually just get a quick message saying, hey, I went and it worked and that’s great. And, you know, have a good life. You know, I don’t want to keep bugging them. But the people that it didn’t work for have been pretty gutted.
Bill Gasiamis (20:03)
Right.
Andrew (20:04)
Because I’ve, you know, even though I’ve tried not to make it something they hang all their hopes on, you know, they still do to a certain extent. And so they come back pretty, not bitter or angry at me, just at the situation, that it didn’t work. And they don’t know where to turn next.
Bill Gasiamis (20:22)
So they might’ve had all their hopes kind of set on this working, all their eggs in one basket, so to speak, didn’t work and now they feel like maybe they’ve lost hope or they haven’t got another alternative or option.
Andrew (20:35)
Yeah, yeah. And what I’ve learned in the last 18 months is that your stroke recovery doesn’t stop. There’s no end date. So when you’re told in hospital that after three months that’s what you’ve got, no, no. doesn’t, like your brain is constantly evolving and working and learning and repending itself.
If you want to work something and exercise something and rehab part of your body, eventually it’s going to improve. Even if it’s only by a little bit and it’s really slow, it’s going to improve.
Bill Gasiamis (21:09)
Yeah. So you’ve been 18 months down the track. One of the questions I got asked recently was, does the procedure need to be repeated every couple of years? Does it last? What have you found about how you have changed or experienced your body in the last 18 months? ⁓ Tell us first what you got back and how quickly and then what that led to, what you were able to achieve as a result of what you got back.
Andrew (21:34)
Yeah, okay. So, um, immediately the things that came back is is that my cognitive fatigue like just just lowered like straight away. Um, and I was when I had the shot, I was exhausted because they take it through a battery of tests. So I like was an hour and a half of tests. And so I was I was done. I was ready to go lie down. Um,
And that just lifted like straight away and it didn’t come back. I still get cognitive fatigue now, but I really have to be doing stuff that that really taxes my brain to do it. And or I have to be really tired. But before I had the injection, I would get I would be on the verge of fatigue all the time.
So it wouldn’t take much to push me over into it. So that was gone. I had a ⁓ really nasty cramp in my right calf that never went away. That went away. That literally just dialed down as I was sitting there after the shot. the emotional control also came back.
Bill Gasiamis (22:42)
Uh-huh.
Andrew (22:43)
which was good. Now, for me, I was, for the first shot, I was only in Florida for 24 hours. So we flew down from Memphis and I had the shot the next day and then we flew back that afternoon.
So when we flew down, because of my cognitive fatigue and sensory overload, I had eye mask, had noise-canceling headphones, had like, lorazepam in my pocket. Like, you know, I had all the, you know, all this stuff to, you know, save my senses. When we flew back, I didn’t need any of it, and that was 24 hours later. So I just stood in the airport like any other traveler. And that was…
Reflections on Stroke Etanercept Injection Treatment and GuiltBill Gasiamis (23:26)
Yeah.
Andrew (23:28)
That was the biggest sign that something profound had happened.
Bill Gasiamis (23:33)
Yeah.
Andrew (23:34)
The other thing was that my hand, my right hand went from feeling like it was sort of like moving in molasses really slow to loosening up and being more independent. And I found only a month ago that I was able to start to play scales on my clarinet again. So I can move my fingers independently. I could cover the holes with my clarinet here.
Bill Gasiamis (23:52)
Wow, man.
Andrew (23:57)
I can the holes in my fingers. It’s something that I haven’t been able to do since the stroke. To be able to play the thing, to be able to just play a scale, just says to me, at some point in the future, you’re gonna be able to play the thing again.
Bill Gasiamis (24:11)
So things are still improving. Your function is changing still. you, being able to play the clarinet, would you can attribute that to a tenor sept that long ago or just things getting better?
Andrew (24:26)
I think because it was if I come home and was able to play the clarinet then I would have a definite causality you know so I would rather say the definite yeah it was a tenor step that did it because before I went away I couldn’t even you know I couldn’t pick up things one more right hand so but because it’s been 18 months I think it’s because that that skill has come back
Bill Gasiamis (24:50)
Yeah, okay. What about work wise? Were you working or not working before the injection?
Andrew (24:57)
No, no. So I was able to go back to relief teaching. The classroom as a music teacher is ⁓ in a high school is too busy and there’s too many moving parts. So that’s not something I’ll be able to do again, at least not in the foreseeable future. And I don’t know if I want to now.
Bill Gasiamis (25:11)
Wow.
Andrew (25:20)
I have done some relief teaching. There are days where I’m in a school and I just feel that it’s a bit too much. And that could be because I had a bad night the night before or it was hot and I couldn’t sleep. And that wasn’t like that before the stroke. yeah, coming up with a new career now has been an interesting journey itself.
Bill Gasiamis (25:41)
Yeah. So there isn’t a need for another injection or anything like that. Nobody ever told you about another injection or what will happen in two years or anything like that.
Andrew (25:51)
No, If I can go there and get one, if I think it’s going to make even more improvement, because I had improvement from, you know, from the first. But yeah, there was no compelling sort of needs to go back. And I’m thinking that I probably would like maybe to have a second one, a second trip there and have.
having the shot but ⁓ I don’t know I’ll see how my improvement goes.
Bill Gasiamis (26:20)
Yeah, okay.
Andrew (26:22)
It’s so hard to One of the things I did do, I had an MRI about two months ago. And it was an MRI to check the status of my tumor and to see where it was. And obviously they also had a look at the stroke site. And comparing the stroke site now to when it was taken when I had the stroke.
there’s a day and night difference. Whereas I had a hole in my brain after the stroke, all I had was a little bit of glial, called glial scar tissue. So scar tissue of the brain cells, a little white line in my brain. ⁓
Bill Gasiamis (27:08)
as opposed to
a round circle of what appeared to be offline or dead brain cells. Yeah, which, you know, it sounds like to me, it’s like where the inflammation was, that area they usually call, they often call, sometimes called the penumbra, which is the area that’s able to be rehabilitated, which is around the site of the stroke, which is offline but not dead, which HBOT targets, the right kind of,
Andrew (27:15)
Yes. Yeah.
Bill Gasiamis (27:38)
hyperbaric oxygen therapy can target those as well and try and reduce them. So day and night, like a proper difference between one and the other.
Andrew (27:47)
Yeah, I was expecting to see when I saw the scan, know, where my brain tumor was and also the big hole and the hole was gone and there was just this like, this is a little, a little line there with scar tissue.
Bill Gasiamis (28:01)
Yeah, fabulous. How long has the brain tumor been there for?
Andrew (28:05)
20 years.
Bill Gasiamis (28:07)
Okay, and what does it do just sort of sit around and ⁓
Andrew (28:10)
Yeah, so ⁓ what happened is it just gradually grows bigger and bigger and bigger and then eventually if you don’t get it treated, it crushes your brain stem and that kills you. So I had mine irradiated 20 years ago and it’s got growing and it’s just started dying off and now it’s just like a…
dead mess in there and they check every four years to make sure it hasn’t done anything naughty and It hasn’t so they actually said of this last scan look it hasn’t changed in the last 12 years, so no more scans
Bill Gasiamis (28:41)
I hear you, okay. So it’s benign now.
Andrew (28:46)
Yeah.
Bill Gasiamis (28:47)
Yeah, okay. So you’ve through the rigor, mate. You’ve had an interesting neurological experience,
Andrew (28:54)
Yeah, yeah, yeah, yeah, feels like my brain’s out to get me.
Bill Gasiamis (29:00)
Yeah. Well, seems like the interventions have been really helpful in prolonging your life and then your life experience, like how you go about life. So as far as you’re concerned, like it’s all it’s all. You know, it’s been a good outcome, both both interventions.
Andrew (29:19)
Yes. Yeah. Yeah, I think so. I mean, my biggest challenge this year has actually not been the stroke or the brain tumor, but it’s been the medications for stroke to prevent another one. So my stroke was caused by an overactive adrenal or adrenal glands producing too much aldosterone.
Bill Gasiamis (29:31)
What man which man say you want?
Andrew (29:43)
And that was only diagnosed and found last year. So What was happening is that my body was? Was was keeping salt it was it was send my blood pressure sky-high and then crash it down
And for 10 years we thought that was anxiety. But what it was was that because my blood pressure wasn’t consistently high, I could go to the doctors and I could be normal. And then my other doctors didn’t have high blood pressure. It was not consistent. So I was just treated for anxiety and given a sort of a low dose blood pressure medication.
But actually what it was is both glands like over producing this hormone and that’s what gave me the stroke. So they’ve they’ve given me a hormone suppressant which helps, but they’ve been trying to.
to juggle multiple types of blood pressure medication to also bring my blood pressure down to a consistent normal. And so up until about three weeks ago, my blood pressure was still all over the place. And they had me on a really nasty cocktail at one point this year where I literally could not function. I couldn’t even get up. It suppressed my whole system so much.
that every time I stood my blood pressure would drop 50 points and I would almost pass out. So I was like a zombie. ⁓ It was just the combination of too many blood pressure medications at once. And finally, I’ve seen a different specialist and he changed my medication and I’ve just got one little pill at the minimum dose and it’s actually stabilized my blood pressure to normal.
Bill Gasiamis (30:51)
All right.
Righto, that’s good.
Andrew (31:18)
So like when I took it today, was 122 over 72. So it hasn’t been like that for I don’t even know how long.
Bill Gasiamis (31:25)
Yeah.
Fantastic, what kind of stroke did it cause?
Andrew (31:31)
are ischemic, so a clot.
Bill Gasiamis (31:34)
⁓ huh, okay. Wow, man. What an interesting journey you’ve been on. And this insight into Etanercept and how and why it might work for some people and not for others is probably helpful for it again, for a whole bunch of people to hear and kind of get a better understanding about scientifically speaking, Etanercept is not a viable solution for people who have had stroke and
there will be some people who will become all, what’s the word? Like they will, they’ll be all, this is snake oil stuff. And then there will be people who brag about it as being the best thing they’ve ever done, which seems to be kind of the camp that you’re in. I think, no, no, no, no. I mean, it’s one of the best things you’ve ever done with regards to your stroke recovery, right?
Andrew (32:18)
I don’t feel like complaining about it though.
Yeah, yeah, and I found that when I got the results for the for the pesto test I really had to do a lot of soul searching because because I couldn’t explain to myself Why it seemed to have worked for me and yet the study was saying hey, doesn’t really have any effect and and I had to to
Bill Gasiamis (32:36)
Wow.
Did you feel remorse or guilt about that? Wow, Wow.
Andrew (32:47)
Yes, very much. I felt like a fraud.
Because why? I couldn’t explain how I had such a huge night and day difference. And that couldn’t be placebo and it’d be still working 18 months later.
Bill Gasiamis (33:08)
Yeah, I think our hunch about the blood brain barrier is where the research needs to go. And I don’t know how you investigate the blood brain barrier. But if you can go there and investigate the blood brain barrier and if you can understand who has a compromised blood brain barrier and therefore.
Andrew (33:15)
Yeah.
Bill Gasiamis (33:31)
due to a compromised blood-barrier barrier, a candidate for a Etanercept I think that’s kind of where it needs to go. Because the biggest issue that people have with clinics who offer a Etanercept perispinally, like Dr. Tobinick’s, the biggest issue that people have that makes it hard for them to make a decision is will I be the right candidate? Will I be the one who will it work for? Or will I be the one that it doesn’t, you know? But I…
I find it very fascinating that you would respond that way, that you would feel guilty and remorseful that it worked for you and the pesto child says it shouldn’t have.
Andrew (34:10)
I feel guilty that it worked for me and didn’t work for someone else. You know, as well. Yeah, yeah, I mean, it’s like survivor’s guilt in a way. Yeah, that’s that and that’s how I felt. so the way I’ve thought of it is, well, OK, if it was placebo, it worked for me.
Bill Gasiamis (34:14)
Yeah.
just wishing for the best for everybody.
Yeah, I can relate to that. Yeah.
Andrew (34:37)
like it just it worked for me whatever it was it worked for me so and that’s that’s that’s all I can all I can say but I think this blood brain theory is is a good one and I would like to I would like to research and understand what what makes the brain leaky like what what events can make your brain
Bill Gasiamis (34:41)
Yeah. Yeah.
Andrew (35:00)
⁓ better suited to receiving Etanercept Like for me, probably the main cause could have been the fact that I had radiation on my brain years ago.
Bill Gasiamis (35:05)
Yeah.
Andrew (35:13)
Or it could be that I have a high blood pressure for 10 years. Or it could be I have my appendix out when I’m 17. But I would like to do some research into what it is, what factors make people more likely to have a leaky brain.
Bill Gasiamis (35:17)
Who knows?
Yeah, I think that’s a great thing. I want to research that too, because I have known about it. I’ve understood it. I appreciated that I might be somebody who has had a leaky brain because of the strokes that I experienced, the brain surgery and all the stuff that I went through. And I know that if you restore the blood brain barrier, you can really decrease the fatigue that happens to people after a stroke. And you can make it impenetrable again to toxins.
and heavy metals and all that kind of stuff, which is often the cause of real chronic neurological fatigue, even in people who haven’t had a stroke, who are, quote unquote, normal. So that’s fascinating. I really appreciate your continued willingness to have conversations about this topic and sharing your story more than once with me. And then also being
being an ear to the people who are curious about whether or not they should go down this path and then kind of just like, you know, being honest about your story, sharing what happened to you, what you experienced and even your own reservations because I don’t think you have anything to, and you probably know this cognitively anyway, right? You don’t have anything to be guilty about or feel bad about or.
anything like that. But I understand why emotionally you might go down that path because you’re a guy that cares deeply for other people. You appreciate how hard it is for people to go through stroke and you wish them the same solution or other solutions that you had so that we don’t have to suffer. I know exactly what’s behind it.
Andrew (37:08)
Yeah, yeah, that’s exactly right. Yeah.
Bill Gasiamis (37:12)
Yeah. Well,
hopefully this continues the conversations to give people more things to think about. Leave us a comment in the YouTube comments section. Reach out via email. Yeah, drop us a comment. Reach out to us and we’d be happy to continue the conversation, support you, guide you. Just being here and I don’t know, help you make a more informed decision. That’s all we can do. We’re not going to suggest.
Andrew (37:35)
Yeah, definitely.
Bill Gasiamis (37:41)
that you should or should not go and experience Perispinal Etanercept one way or another.
Bill Gasiamis (37:46)
Well, that was Andrew Stopps again. What a fascinating conversation. If today’s episode connected with you, I’d love to hear your thoughts in the YouTube comments, especially if you’ve looked into Etanercept Try it. I decided not to. Your experience can help someone else make a more informed decision. And if you found this helpful, please subscribe on YouTube and follow the podcast on Spotify or Apple podcasts. Reviews and comments genuinely help more.
stroke survivors find these conversations. If you want to go deeper, you can grab my book at recoveryafterstroke.com slash book. And if you’d like to support the podcast and help keep it going, you can join us on Patreon at patreon.com slash recovery after stroke. Thanks again for being here. You’re not alone in this recovery journey and I’ll see you in the next episode.
The post Stroke etanercept injection 18 months on: Andrew’s update after the PESTO trial appeared first on Recovery After Stroke.
Foot Drop Solutions After Stroke Without an AFO: Ken Kerns’ “New Way to Walk” (Plus Aphasia Recovery After a 10-Day Coma)Ken Kerns didn’t just wake up from a stroke. He woke up from a 10-day medically induced coma after an AVM brain hemorrhage, facing a reality that would shake anyone’s identity: right-side paralysis, aphasia, and the exhausting work of rebuilding everyday life from scratch.
And then, because stroke recovery loves a twist, one of the nurses kept calling him Frank.
That moment might sound funny now, but in the early days of brain injury, it landed like a true identity crisis. Ken would later turn that experience into a book title: Anything But Frank—and into a bigger message that matters for every survivor and caregiver: recovery isn’t one problem to solve. It’s dozens. And you solve them one by one.
This episode covers the full story (AVM, coma, aphasia, purpose). But it also includes something many survivors are actively searching for: foot drop solutions after stroke without an AFO—specifically, a practical tool Ken found that helped reduce falls and made walking feel more natural again.
The day everything changed: an AVM hemorrhage at homeKen’s stroke happened early in the COVID era, when work had shifted home and hospitals were under intense strain. He was preparing for a meeting when he went to the bathroom and collapsed. His wife, Carrie, couldn’t open the door—he’d fallen behind it. She called emergency services.
Ken has no memory of those moments. Like many survivors, he had to rebuild the story from what others told him.
What followed was terrifying uncertainty. A neurosurgeon reviewed imaging and initially feared a tumor (Ken had a history of kidney cancer years earlier). Carrie was allowed into the emergency room to say goodbye because it wasn’t clear Ken would survive surgery.
But in surgery, the cause became clear: an arteriovenous malformation (AVM). The surgeon removed it, and Ken was placed into a medically induced coma for 10 days.
Aphasia: when your brain is fast… and your mouth won’t cooperateWhen Ken woke, his deficits were immediate and brutal:
- Paralyzed on the right side
- Unable to speak
- Had to relearn swallowing
- Severe aphasia that improved over time
One of the most honest parts of Ken’s story is how confusing aphasia can feel from the inside. Ken described it like this: his cognition is there, answers are forming—yet the “path” to speech is obstructed.
“My brain works much faster than my mouth.”
“There used to be a direct path… and now that path is worn… covered by weeds.”
That metaphor matters because it reframes aphasia as a communication access issue—not a lack of intelligence.
Ken found a major turning point through a Minnesota-based communication group: Minnesota Connect Aphasia Now (MNCAN). Practicing weekly conversations (with support from a speech-language pathologist) rebuilt something more than words. It rebuilt confidence.
He went from relying on Carrie to order food or check in at airports… to speaking up again in real-world settings. And eventually, he didn’t just participate—he stepped into leadership and became president of the board.
If you’re living with aphasia, this is one of the most powerful “hidden wins” in recovery: you don’t have to wait until speech is perfect to start practicing in the world.
“Anything But Frank”: identity, emotion, and meaning after strokeIn the hospital, a nurse repeatedly called Ken “Frank.” It sounds like a paperwork mistake—but for someone fresh out of coma, it triggered fear and confusion: Did I die? Am I someone else? Who will I FaceTime?
When the iPad finally turned around and he saw Carrie, he cried—not from sadness, but relief.
Later, Ken’s siblings did what siblings do: they turned the story into a running joke. They called him Frank. Ken’s response became a line that carried him forward:
Call me anything but Frank.That phrase became the title of his book and a symbol of what recovery often is: reclaiming identity while your body and brain renegotiate who you are.
Ken also spoke candidly about emotional recovery. In rehab, he felt intense anger—then shifted into a daily question that gave him structure: “Guide my day. Show me the purpose.” Whether you share Ken’s faith or not, the takeaway is universal:
When recovery feels chaotic, survivors need a meaningful frame to keep going.
Foot drop solutions after stroke without an AFO: the “new way to walk” Ken foundFoot drop is one of those stroke problems that seems “small” until it isn’t. It can quietly steal independence through trips, falls, and fear—especially on stairs, uneven ground, and (in Ken’s case) Minnesota snow and ice.
Ken described classic foot drop challenges:
- Difficulty lifting the foot
- Frequent falls
- Trouble on the stairs
- Reduced confidence walking
He used an ankle-foot orthotic (AFO), which helped. But later, he discovered a product that—for him—became a workable AFO alternative: Cadence shoes.
Ken’s experience was specific and practical:
- The shoe design helped his foot glide during the swing phase
- Then grip when the weight shifted forward
- He reported no falls since wearing them
- He said he no longer needed his AFO
- He felt stair descent improved because the shoe gripped rather than sliding off the step
This is crucial: this isn’t “one weird trick.” It’s a tool that matched Ken’s exact pattern of movement, environment, and needs.
If you’re exploring foot drop solutions, here’s the smart way to use Ken’s story:
- Treat tools as experiments, not guarantees
- Trial safely (with your physio/OT if possible)
- Test on the surfaces that actually challenge you (stairs, carpet edges, outdoor paths)
- Measure results: falls, near-falls, fatigue, confidence, walking speed
Ken also used another independence tool: a left-foot accelerator to return to driving while his right ankle remained immobile. That’s a reminder that “walking recovery” isn’t only rehab—it’s also smart adaptation.
What to take from Ken’s story (even if your stroke was different)Ken’s recovery wasn’t a straight line. It was many small wins, stacked over time. If you’re in the thick of it, consider this simple plan:
- Name the real problem (not “I’m broken,” but “I trip when my foot drags.”)
- Practice communication in community (groups like MNCAN show what’s possible)
- Choose tools that reduce risk today (falls steal momentum)
- Rehearse what matters (Ken practiced speeches until they were automatic)
- Protect your inputs (Ken avoids depressing “poison” media that drains recovery energy)
And if you’re a caregiver: the biggest gift is often helping your person keep experimenting—without pressure, without shame, and without rushing the timeline.
Keep going with the full episodeKen’s “new way to walk” is a valuable segment—but the whole episode is the real promise: AVM stroke recovery, aphasia progress, identity rebuilding, and the meaning that can emerge after trauma.
If you want more stories like this (and practical tools survivors are actually using), you can also check out Bill’s book and support the podcast here:
- Book: The Unexpected Way That A Stroke Became The Best Thing That Happened
- Patreon
This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
Ken Kerns: 10-Day Coma, AVM Stroke Recovery, Aphasia Progress & Walking ConfidenceKen woke from a 10-day coma after an AVM stroke, unable to speak or move his right side, then rebuilt his voice and his walking confidence for life.
Book – Anything but Frank: A Journey of Healing, Patience, and RediscoveryArchway PublishingAmazon (U.S.)Amazon (AustraliaAdditional Resources:
Minnesota Connect Aphasia Now (MnCAN)
Cadense Adaptive Shoes
The Transcript Will Be Available Soon…
The post Ken Kerns: 10-Day Coma, AVM Stroke Recovery, Aphasia Progress & Walking Confidence appeared first on Recovery After Stroke.
PESTO Trial Results: What Stroke Survivors Need to Know About Perispinal EtanerceptIf you’ve spent any time in stroke recovery communities, you’ve probably seen the same pattern: a treatment gets talked about with real intensity, people share personal stories that pull you in, and suddenly you’re left trying to sort hope from hype from “maybe.” When the decision also involves significant cost, that uncertainty can feel even heavier.
That’s exactly why I recorded this episode: to help stroke survivors and their families understand the PESTO trial results in plain language without drama, without attacks, and without jumping to conclusions.
In this interview, Professor Vincent Thijs explains what the PESTO trial set out to test, why it was designed the way it was, and what the results can (and can’t) tell us about perispinal etanercept in stroke recovery.
The real problem: not “hope vs skepticism”… it’s confusionIf you’re a stroke survivor, you’re already doing something heroic: you’re living inside a recovery journey that demands patience, grit, and constant adjustment.
The challenge isn’t that you “don’t want to believe” in something. The challenge is that it’s genuinely hard to make an informed decision when:
- People report different outcomes
- Online conversations become polarised fast
- Scientific studies use unfamiliar language
- The same treatment can be described in completely different ways depending on who you’re listening to
My goal here isn’t to tell you what to do. It’s to help you think clearly, ask better questions, and understand what the best available evidence from this trial actually tested.
What the PESTO trial was trying to investigate (in simple terms)Professor Thijs explains that the PESTO trial was designed in response to strong community interest. Stroke survivors wanted to know whether the way perispinal etanercept is currently administered in some settings could be demonstrated to work under the standards used for medicines to become widely accepted as part of routine care.
So the researchers designed a randomized, placebo-controlled clinical trial. In this type of study:
- A computer assigns participants to either the treatment or a placebo
- Participants and clinicians are kept “blinded” (they don’t know who got what)
- Outcomes are measured in a consistent way at set time points
In the PESTO trial, the focus was on stroke survivors with moderate to severe disability and reduced quality of life. The primary question was straightforward:
Does quality of life improve after one or two injections compared with placebo, over the measured timeframe?
Why this study looked at quality of life (not one symptom)One key detail Professor Thijs highlights is the design choice: the trial didn’t only target one issue, like pain or walking. It aimed to be more “pragmatic,” reflecting how treatment is used in real-world settings where people seek help for different post-stroke challenges (mobility, fatigue, speech, cognition, pain, and more).
That means the main outcome wasn’t “Did walking speed improve?” or “Did pain reduce?” It was broader:
- Quality of life at 28 days
- And again after the second injection timeframe (56 days total)
This matters because your results can look different depending on what you measure. A trial targeting one symptom might see a signal that a broad quality-of-life measure doesn’t detect (and vice versa).
What the PESTO trial results foundIn Professor Thijs’ words, the trial did not show a difference in quality of life between the treatment and placebo groups at the measured time points:
- No clear quality-of-life improvement at 28 days
- No clear improvement after two injections at 56 days
That’s the central outcome.
But there’s another finding that grabbed my attention—and it’s one many listeners will find surprising.
Quote block (mid-article):
“We saw that 58% of the people also had that improvement [with placebo] and 53% had it with etanercept… our initial guess was very wrong.”
— Professor Vincent Thijs
The “placebo signal” and why it mattersA strong placebo response doesn’t mean “it was all in their heads.” It means that in a blinded clinical trial, people can improve for multiple reasons that aren’t specific to the drug itself, such as:
- Expectation and hope
- Natural fluctuations in symptoms
- The impact of being monitored and supported
- Regression to the mean (symptoms often move toward average over time)
- The structure and attention that come with trial participation
Professor Thijs describes how, during the blinded phase, participants reported improvements in a variety of areas (like sensation, vision, speech). The crucial point is: the team didn’t know who had a placebo or an active treatment at the time, which is exactly why blinding exists.
For you, the listener, this is a reminder of something empowering:
Personal stories can be real and meaningful—and still not answer the question of efficacy on their own.
“Am I a candidate?” The trial’s honest answer: we don’t know how to predict it (yet)One of the most important parts of this conversation is the desire to identify who might benefit most.
Professor Thijs explains that the team looked at subgroups (for example: age, sex, severity, diabetes, time since stroke). In this trial, they didn’t find a clear subgroup where the treatment stood out as reliably beneficial compared with placebo.
He also adds an important caveat: subgroup analysis is difficult, especially in trials that aren’t extremely large. So the absence of a clear “responder profile” here doesn’t automatically prove none exists—it means this trial didn’t reveal one.
What this episode is (and isn’t) sayingLet’s keep this grounded and fair.
This interview is not about attacking any person, provider, or clinic. It’s not about shaming stroke survivors who tried something. It’s not even about telling you that you should or shouldn’t pursue a treatment.
It is about this:
- Understanding what the PESTO trial tested
- Understanding what the results showed within their timeframe
- Knowing the limits of what the trial can conclude
- Using evidence to reduce confusion before making big decisions
A simple “clarity plan” before you decide anything bigIf you’re considering any high-stakes treatment decision, here’s a neutral, practical way to move forward:
1) Ask: “What outcome matters most for me?”Is it pain? walking? fatigue? speech? cognition? daily function? quality of life?
A treatment might be studied for one outcome and discussed online for another.
2) Ask: “What does the best evidence say—specifically?”Not “Does it work?” in general, but:
- In what population?
- Using what method?
- At what dose?
- Over what timeframe?
- Compared with what?
3) Ask: “What are my options and trade-offs?”Talk with a qualified healthcare professional who understands your medical history, risk factors, and rehab plan. Ask about:
- Potential risks and side effects
- Opportunity cost (what else could you do with the same time, money, and energy?)
- Evidence-based rehab and supports that match your goals
Listen to the full interviewIf you want the clearest explanation of the PESTO trial results—from the lead researcher himself—listen to the full episode with Professor Vincent Thijs.
And if you’d like to support the podcast (and help keep these conversations going for stroke survivors who need hope and clarity):
- Bill’s book: recoveryafterstroke.com/book
- Patreon: patreon.com/recoveryafterstroke
Medical disclaimerThis blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
PESTO Trial Results (Etanercept After Stroke) | Interview with Professor Vincent ThijsConfused about perispinal etanercept after stroke? Prof Vincent Thijs explains the PESTO trial results clearly, calmly, and evidence-first.
More About Perispinal Etanercept:
Etanercept Stroke Recovery: Wesley Ray’s Relentless Comeback
Dwayne Semple’s Remarkable Stroke Journey and Perispinal Etanercept
Etanercept for Stroke Recovery – Andrew Stopps
Support The Recovery After Stroke Podcast on Patreon
Highlights:
00:00 Introduction and Overview of the PESTO Trial
04:19 Design and Objectives of the PESTO Trial
11:23 Recruitment and Methodology of the Trial
18:31 PESTO Trial Results and Findings
24:28 Implications and Future Directions for Research
32:15 Conclusions and Final Thoughts
Transcript:
Introduction: PESTO Trial ResultsBill Gasiamis (00:00)
Hello and welcome back to Recovery After Stroke. Before we get started, a quick thank you to my Patreon supporters. Your support helps cover the hosting costs after more than 10 years of me doing this show solo. And it helps me keep creating episodes for stroke survivors who need hope and practical guidance. And thank you as well to everyone who comments on YouTube, leaves reviews on Spotify and Apple podcasts.
buys the book and even to those of you who don’t skip the ads. Every bit of that supports keep this podcast going. Now today’s episode is about the PESTO trial results and I’m interviewing Professor Vincent Theis. If you’ve ever felt confused by the conversation online about perisponal antenna sept, some people sharing positive experiences while others are feeling disappointed and plenty of strong opinions in between, this episode is designed to bring
clarity. We talk about what the PESTO trial set out to test, how the study was designed, what it found within the measured timeframes and what the results can and can’t tell us. Just a quick note, this conversation is educational and not medical advice. Always speak with a qualified health professional about your situation. All right, let’s get into it. Professor Vincent Dase, welcome to the podcast.
Vincent Thijs (01:24)
Thank you for having me, Bill.
Bill Gasiamis (01:26)
I’m really looking forward to this conversation. Atenosept is one of the most hotly discussed topics in stroke recovery. And there’s a lot of misconceptions about whether or not it is or is not efficacious. And while there’s a lot of anecdotal evidence where some people have had positive outcomes from injections, there’s also a lot of people’s feedback, which is very negative about their experience with
the Etanercept injections and the lack of results. So today, the reason I reached out is because I wanted to get to the bottom of the findings of the PESTO trial. And I’m hoping that you can shed some light on that. The first question basically is, can you start by explaining in simple terms what it was that the PESTO trial set out to investigate?
Vincent Thijs (02:22)
All right. The PESTO trial was in response to community members, stroke survivors, wanting to find out whether the current practice of administering Etanercept has done in the U.S. in private practice. In Denmark, I hear there are some sites that provide this treatment. Whether the treatment
and genders can be actually proven according to the standards that we use in the pharmaceutical industry to get it to become accepted as a standard of care treatment. For that, you need to do what we call a randomized controlled clinical trial, preferably two that show evidence that treatment
does what it’s set out to do. And that’s why with this background and the community pressuring the minister several years ago, Mr. Hunt at the time, to fund a trial that would help answer that question.
Design and Objectives of the PESTO TrialThere was a call was set out to do this trial and several groups in Australia
applied and then an independent committee decided to award the trial to the PESTO study group. And then we tried to design this trial to give an answer. So it’s mostly about people that have moderate to severe disability after their stroke that have reduced quality of life. And
We wanted to know, does their quality of life improve when Etanercept is administered? And we wanted to test whether one or two injections were needed.
Because that’s what we heard from stroke survivors that from Australia and internationally that went over to the US. Well, this is how it’s done. You get one or two injections and there was a paper that had shown big effects with one injection. So that was the primary endpoint, but then we also looked at whether two injections could help. And when you design a trial, you have to make a decision, will we focus on people with.
pain after stroke, or will we look at people who have mobility issues or speech issues or cognitive issues? And we saw that current clinical practice actually was people with various impairments after stroke were accepted and received the treatment. And what would have been the advantage of doing say only mobility or only pain? Well, you can then look at the outcome of pain or mobility, does it improve?
Or is your cognition improved? But because we wanted to be pragmatic and we know that recruitment in clinical trials needs to reflect how is current practice. So we thought let’s put in all the people with moderate to severe disability, whatever their impairment after stroke and reduce quality of life. And then we looked at quality of life as an outcome rather than an individual
impairment. And so what we did then was to use the randomized technique and where it’s left up to the computer to decide what treatment a person will receive, the active Etanercept or a similar looking placebo, and then look at 28 days and we had to make a decision what makes sense 28 days, what is practical.
to see whether that injection then had improved quality of life. And then we did another injection again with a placebo or the active drug. And then after 28 days again, we looked again whether that had made a difference. So we have people that had received two times the placebo, one time the placebo, and one active injection. And then we have people that had received two active injections.
And then we were able to compare those and see whether they had made bigger improvements if you receive two injections versus one or zero. Unfortunately, we couldn’t show a difference in quality of life at 28 days. And we also couldn’t show an improvement at 56 days after people had two injections. But that was in a nutshell how we designed and the background of the study.
Bill Gasiamis (07:25)
So the main difference then between the Griffith University study and your particular study was that they did go after a specific improvement in one area, I believe. it in? Okay. So although those guys went after pain, you guys went after just a general improvement in quality of life after the injection and your stroke survivors.
Vincent Thijs (07:39)
Mostly, think.
Bill Gasiamis (07:54)
would have been as far as 15 years post stroke. Is that right?
Vincent Thijs (07:59)
Yes, correct. We wanted to have people early after stroke between one and five years, and then also between people five to 15 years after stroke. That was also for practical reasons. Once you start trial, you see how good recruitment is, how many people want to participate in the study. And we saw that if we went to up to five years.
Recruitment was relatively slow. So we added this additional group of people later on after their stroke. that because many people, I’m five years, I’m six years after stroke. Why can’t I get the treatment? And you know, so we also wanted to expand the pool. And that’s also what happens in clinical practice. Current clinical practice, I don’t think the sites and
the US and they would refuse the patient six years or so. We just wanted to reflect the people that we see on the website going for this treatment.
Bill Gasiamis (09:01)
Yeah, yeah. And then the difference between the Griffith trial and your trial as well was the actual dosage of Etanercept the amount that was in the injection. I do believe that your trial was a 25 milligram injection. And I believe that the Griffith University trial was 25 milligram.
injection to 50 milligram injection.
Vincent Thijs (09:34)
Yeah, we just based on what people told us they received when they went to the clinic, also the other sites and then also 35 milligram was chosen because that’s in the patent for the street.
Bill Gasiamis (09:49)
Okay, I see. So you’re trying to as much as possible mimic what was happening out there in in the private practice
Vincent Thijs (10:00)
We wanted to answer the question, is current clinical practice, is that beneficial? And that’s what sort of what the call was to do a clinical trial in current clinical practice. You can, you have to make decisions, right? And I think this was the most relevant for a stroke survivor.
Bill Gasiamis (10:17)
Now that’s really interesting that stroke survivors were able to twist the arm of a minister to get the funding to begin that process of the trial. How long ago did this actually start?
Vincent Thijs (10:28)
I think it was 2016, 2017 or so. So it takes a while to get the minister and then I think that the trial started in 2019. took a while to complete as well.
Bill Gasiamis (10:43)
Right understood. Okay So then you recruit people they come along and they go through the trial through the particular trial How does that work on the day do they turn up are they admitted? We’ll be back with more of professor face explanation in just a moment But I want to pause here because if you’ve ever felt stuck between hope and uncertainty, you’re not alone When you’re recovering from stroke, you’re constantly making decisions and some decisions feel high stakes, especially when confronting information that’s conflicting.
Recruitment and Methodology of the TrialIn the second half of this conversation, we get into the parts that really help you think clearly. What the trial results do and don’t mean, and why placebo responses matter in blinded research, and how to frame smarter questions before you commit time, money, or energy to any path. If you want to support the podcast and keep these episodes coming,
You can grab my book at recoveryafterstroke.com/book or join the Patreon at patreon.com/recoveryafterstroke All right, back to the episode.
Vincent Thijs (11:51)
All right, so we recruited from a variety of sources. So we had kept a log of people that were interested in this. We had a Facebook post in New Zealand, for instance, where we recruited as well. We had people from the Stroke Clinical Registry that were approached. We had a website and people could register their interest if they were doing a search online to participate in clinical trial.
So the variety of sources and then we have to determine eligibility that was mostly done either via an in-person visit or remotely via telehealth. We tried to get their medical information, what type of stroke they had. And then we also questioned whether they had this modified rank in scale, the disability they had, the impairments they had from their stroke. so then people came.
they were considered eligible, then we scheduled a visit and they would typically come in no overnight stay needed. It was a day procedure that was done. People were then receiving another questionnaire on the day itself to measure their quality of life and other measures like their fatigue levels and how much help they required, etc.
And then we proceeded with the injection, which was done. We had bought a special bed that was able to do the, the, the tilting that was required. So we set the people up, injected and then tilted the table. so, we received the drug. It was prepared independently by the pharmacist. So the pharmacist, they took the drug off the shelf or the made the placebo.
and they made sure it looked exactly alike. So then somebody from the trial team picked it up from the pharmacist. The pharmacist didn’t tell, of course, what it was. And then the administration happened. So the doctor who administered and the participant did not know what they received. So after the procedure, they were left like this for four minutes. And then after four minutes, people could sit up again. And we waited about half an hour.
then we asked them how they were doing, whether there were any adverse reactions, ⁓ and ⁓ then after that half an hour of observation people could go back to their habitual situation. ⁓ it’s a very simple ⁓ procedure to do.
Bill Gasiamis (14:35)
I believe there was a was there 126 participants
Vincent Thijs (14:40)
Yes, 126 people participated. had anticipated a little bit more people to participate. So we had hoped 168, but recruitment fell flat after a while and we were not able to find more people to recruit. So we made a decision and then, you know, these clinical trials, they have some funding ⁓ and they require
the treatment team to be paid, et cetera, and that ran out. So we had to stop at a certain time.
Bill Gasiamis (15:13)
Was the study stopped early because of a decrease in the amount of funding or was there an issue with the funding at some point?
Vincent Thijs (15:23)
Funding ran out. You hire people for a certain amount of years and then you have fewer patients than you anticipate. So you have to stop.
Bill Gasiamis (15:32)
huh, okay. So would that affect the outcome of the trial? Would you say the lack of funding or the lack of the ability to take the trial further?
Vincent Thijs (15:42)
Yeah, well, what we had when you do the trial, when you plan the trial, you say, well, this is what we’re going to expect in terms of efficacy. You have to make a guess and say, well, that many people will have an improvement in quality of life if we give them the placebo and that many people will have an improvement in quality of life with the trial drug. And we had thought that about 11 %
would improve with the placebo based on an earlier study. And then we had to make a guess because nobody had done this type of study on what Etanosap would provide. But reading the report that was published several years ago now, where 90 % of the people reported improvement in their impairments, we thought, well,
Let’s not go for 90%, but a 30 % improvement.
And so that was based on that we needed 168 people to participate in the trial.
So that was what we call the pre-planned sample size estimation, which is a guess.
When we stopped at 126 participants, actually we saw that the results were very different. There was not that 11 % actually in the placebo arm. saw that 58 % of the people also had that improvement and 53 % had it with ethanosab. So our initial guess was very wrong based on
some statistical advanced statistical techniques we have. We have quite a lot of power to estimate whether there was a difference. So I think the trial can provide us an answer. It’s large enough to give us an answer about this particular question. Is current clinical practice in these people with this range after their stroke, does it improve?
quality of life after a month or after two months. I’m not speaking about early improvement, I’m not speaking about six months down the line. We only can decide what we see in this study.
Bill Gasiamis (18:05)
So you have some limitations because you can’t have the funding to test one month, two months, six months, 12 months. You have the funding to basically meet the design of your study and then you can report on that. Now what’s really interesting is that the placebo had such a large result.
PESTO Trial Results and FindingsVincent Thijs (18:34)
What kind of things were people reporting that improved for the people who had the placebo injection?Look, this is, course, when we were in the blinded phase, when neither myself or my colleagues who did these scales, we were totally blinded. And that’s, remember vividly people saying, it didn’t do anything for me. But then there were also people said that they could see again. And so people that had improvement in sensation.
Some people had improvement in their speech. there were, we, we observed these things, but we didn’t know whether they were active or placebo. And then surprisingly we had some people in whom we thought, they must have had active drug that turned out to have the placebo, but that’s years after, right? Because it takes a little bit of time to accumulate a sufficient number of patients. And we were only reporting and breaking the blind when the trial was finished.
because otherwise you may be biased in all your analysis, et cetera. You don’t want to do that. So you wait until the end of the study to break the blind. And that’s very frustrating for the participants because there were many people that said, I must have had the placebo because it didn’t do anything for me. And there were other people that were, and some people like that, they said, I still want to go to the US.
Bill Gasiamis (19:37)
I see.
Vincent Thijs (19:59)
And please, can you tell me if I received a placebo? And I understand it was terribly frustrating for these participants. But we were very strict. No, we don’t want to break the blind. This is against the rules that you have to adhere to in a clinical trial. And so we didn’t do that. Of course, once the trial was finished, we were able to report the results back to the
the participants. And then there were some people that were very surprised that they had received the active drug. I remember one person vividly who said, you have to tell me now because I’m going. And then I said, hold off, hold off. And then we told them you had twice the active drug. And so they decided not to go anymore. So you see how
From a clinical trial perspective, it’s very important to remain very objective and not being able to see what people have received. From a humane level, of course, I understand it was very important to these people.
Bill Gasiamis (21:02)
Yeah, that’d be difficult. ⁓ And then I imagine that had the placebo not worked and then the tenisept did work, then there would have been people who would have said, well, I’ve received the placebo. It didn’t work for me. Other people received the tenisept. It did work for them. Why can’t I get the tenisept injection now?
Vincent Thijs (21:26)
Yeah, and we also had two people, people that had twice the placebo who noticed an improvement and have told me the improvement is still there.
Bill Gasiamis (21:35)
Wow.
Vincent Thijs (21:36)
So it.
Bill Gasiamis (21:38)
That’s amazing. Now was the.
Vincent Thijs (21:40)
And
often that, and I must tell you, often those were relatively little things that seemed to improve both with the placebo and in the active group. And you see that there are changes in quality of life that people have reported, but it happens as well with the placebo.
Bill Gasiamis (21:58)
Wow. Was the intention of the study that was funded at the very beginning in 2016 by Minister Hunt, was it to determine whether or not this was going to be an effective treatment for people in stroke and therefore to roll it out somehow in the Australian medical system for stroke survivors? What was the thinking for Minister Hunt? Do you know?
Vincent Thijs (22:24)
Of course, I was not involved in that lobbying to the minister or anything, but it was to bring it on a pathway towards regulatory approval. We know that Etanercept is a relatively cheap drug that you can get ⁓ and is approved already for some indications, especially in people with rheumatoid arthritis, the condition of the joints, but it’s not approved for stroke. And to be officially approved and then potentially re-
reimbursed on the PBS. You need to have some trials that have been done such as PESTO. We do different trial phases. One would be a phase two trial and a phase three trial. So phase one is typically in people just to assess the safety and some dosages usually in healthy people. And then a phase two is safety amongst stroke survivors.
and preliminary efficacy. And that’s where PESTO was what we call a phase two B trial. And then a phase three trial would then be a trial in many more participants based usually on the results of a phase two B trial. And then usually when you have a phase three trial and it’s convincing and the authorities may approve such a trial.
Bill Gasiamis (23:46)
So in this case, the phase two B trial, this PESTO trial didn’t find that it’s efficacious. And as a result, there’s not going to be a further trial. Would that be accurate?
Vincent Thijs (23:56)
Well, based on the findings we have in this particular type of ⁓ way of administering in this particular group of people, I don’t think there’s enough evidence to argue for a phase three trial. It may be that you could say, well, we want to focus on pain because that was more promising. Well, you’ll need to do another trial in that condition.
Implications and Future Directions for ResearchAfter stroke or maybe within a year after stroke. I mean, there are other possibilities, but at the moment, current clinical practice type trials, I don’t think there’s enough evidence to move forward with that.
Bill Gasiamis (24:43)
What would the numbers have had to look like for the trial to conclude that there was evidence of efficacy?
Vincent Thijs (24:51)
Well, I think based on what we have now, you would need to design a much, much bigger trial because there was only a 5 % difference between the placebo and the active group. And actually it was in favor of the placebo. So the placebo did a little bit better, not statistically significant. So it could just be by chance, but you would need probably thousands of people.
Bill Gasiamis (25:15)
I see. And I imagine there’s not a lot of excitement about funding something like that by the people who fund these trials.
Vincent Thijs (25:25)
Yes, typically the funders will look at how good is the evidence to pursue this. And if you were a pharmaceutical company on a pathway to development for a drug, you probably would say, well, it looks safe, but it didn’t do what it intended to do. So let’s stop the development of this drug for this indication.
Bill Gasiamis (25:45)
I say so.
I think one of the challenges with the path of administering a TANACEP to stroke survivors is that there seems to be a missing step. And the step to me is determining whether or not somebody is a candidate for a TANACEP. perhaps if we knew more about the stroke survivor, what was actually happening in their particular brain, and we were able to determine some similarities between the people who have had a positive result and we developed a method, then that would make it a lot easier.
to say, well, I’m a stroke survivor. I’d like to have a TANACYPT and then go through a process of determining whether or not I was a candidate rather than just guessing whether I’m a candidate or not and then having to pay money to find out whether in fact I was a candidate.
Vincent Thijs (26:33)
The trial provides a little bit of answers to that. ⁓ You want to identify a marker or a subgroup of people in whom the drug will work particularly well. And so you could look at, and we looked at different things like females versus males, if you’re younger versus older, if you have very severe disability or less severe disability, if you have
diabetes, are you early after your stroke or later? That one to five versus six to 15 category. And we could not identify a group in whom the the drug worked particularly well. Now there’s a caveat when you do a clinical trial, it’s really hard to look at subgroups, especially if your trial is relatively small and the PESTO trial is relatively small. So you have to take this with a grain of salt, but it was nothing really promising.
that we could identify. So probably you need other markers. If you believe in Etanercept as a drug, you would possibly need to look at what are the levels of TNF alpha, the drug, the molecule that actually is targeted. Unfortunately, there’s nothing like readily available to do that. Could it be that people with a…
a stroke in a particular location that would work particularly more than in others, but we don’t have any real way at the moment to do that.
Bill Gasiamis (28:08)
Okay, so we’re assuming that the people who experience an improvement after they’ve had an attempt to shut that the markers of TNF alpha were lower or higher or
Vincent Thijs (28:21)
Well, the theory is that they have a lot higher TNF-alpha. Now, as you know, the premise is Etanercept works by reducing this molecule and we have good evidence that it reduces this molecule in the blood, but we don’t have good evidence that it reduces the levels in the brain. That’s where you want it to be. And one of the difficulties and many scientists that work on the Etanercept and ⁓ have said, look, it doesn’t cross the blood-brain barrier. It doesn’t.
go against the natural defense that we have to protect the brain against substances that could potentially be harmful for the brain or that have a large size. And the Tandacep we know has a large size would not cross the blood-brain barrier. So it doesn’t reach the brain. And many people look at it with relative skepticism that it actually enters the brain.
Bill Gasiamis (29:18)
⁓ And then with regards to rheumatoid arthritis, doesn’t need to cross the blood-brain barrier. It just somehow gets to this, position or the place where inflammation is occurring. TNF-alpha is active and it can easily mitigate the impact that TNF-alpha is causing. In the brain, the brain is protected by the blood-brain barrier and it cannot cross the blood-brain barrier under normal conditions and therefore it can’t get to where the TNF-alpha is.
if there’s any TNF alpha, if inflammation is the issue and it cannot resolve it one way or another. So for some people perhaps it can’t resolve it. Now, I don’t understand about Etanercept a lot. I don’t understand exactly how the molecule works, et cetera. But if it was injected into a blood vessel, is that not something that can occur? And if it was, if it can occur, would that then cross the blood brain barrier?
Vincent Thijs (30:15)
That wouldn’t cause a blood brain barrier, no. You would have to do what we call a lumbar puncture or put a little ⁓ injection into the ventricles and then hope that it would enter the area that is stark where the TNF alpha is elevated. Those experiments have not been done.
Bill Gasiamis (30:17)
Either.
Okay, so a lumbar puncture is probably riskier than…
Vincent Thijs (30:44)
Well, it’s uncomfortable. It’s uncomfortable and we do it to administer drugs if needed. Some people with brain cancer receive it. There are other trials ongoing in certain areas of stroke where it’s done.
Bill Gasiamis (30:58)
Then the difficulty is, and my job here is to report back to the community how they should proceed with Etanercept going forward. Now, I don’t expect you to answer that. However, your study probably gives enough information for people to be able to make an even more informed decision than they did before. Previously, what I think was happening is people, and it still happens every day. And I’ve interviewed a lot of stroke survivors who’ve had
positive results with Etanercept. The challenge is getting interviews with stroke survivors who have had negative results with Etanercept. That is something I haven’t been able to do. So if somebody happens to be watching and listening to this and they have had the Etanercept shots and they didn’t get positive results, please reach out so that we can share a balanced story of what’s happening out there in the community. Would there be a reason for the community to perhaps
begin again to lobby a government or a minister of a government to look at perisponinal tenosept and study it in a different way, like administration via a lumbar puncture.
Conclusions and Final ThoughtsVincent Thijs (32:08)
I think we need more, probably go back to the drawing table to see whether, because we’re just taking a step back. The idea is that there is inflammation after stroke and we know that there is inflammation after stroke. We don’t, we just don’t know how long it is. We don’t have a good marker. Is it present only for weeks or months after stroke or can it persist for years?
The theory is that it persists for years, but if you look at the actual experiments that have been done, it’s really hard to study in humans because we don’t have good tests. But if you look in animals, it’s also hard to do long-term studies in animals, but nobody has really proven that conclusively that there is still after the stroke causes a scar, that process is still really active.
Is TNF-alpha years after a stroke still present? Yes, it’s present because we use TNF as a transmitter in the brain or a chemical in the brain, but is it still worth reducing its activity? That’s probably, I think, a bigger question that science needs to answer is to understand that all inflammation piece and the time after stroke that it persists in my
Bill Gasiamis (33:35)
Yeah, because it could still be the fact that the person has had brain damage. The particular part of their brain that’s damaged has, for example, taken offline one of their limbs and there is no way to recover that once it’s gone. there is no, there may also be no inflammation ⁓ there. So somebody in that situation receiving Etanercept
wouldn’t get a result even if it was able to cross the blood-brain barrier because the damage is done and that’s the challenge with the brain is once it’s damaged restoring the damaged part is not possible.
Vincent Thijs (34:15)
Yeah, look, after this experience with the PESTA trial, I think we need to work on other avenues and I’m not as hopeful with this based on the data that I have seen.
Bill Gasiamis (34:28)
Yeah
Well, my final question then is, are you planning on exploring inflammation and recovery after stroke with any work that you’re doing in the future? Is there any more of this type of work being done?
Vincent Thijs (34:46)
we’ve just launched a new study, which is not a randomized trial, but it’s trying to get at this common symptom that people have after stroke, which is fatigue and cognitive changes. And one of my post-docs, Dr. Emily Ramech, she’s a physio by background. We just launched what we call the deep phenotyping study after stroke. And we are
looking at young people that have had a stroke up to age 55 and we’re taking them into the scanner. We will do a PET scan that’s looking at inflammation. We’re taking their bloods and looking at markers of inflammation and see how that relates to fatigue after stroke. This is between the first month and the sixth month after stroke.
That will give us a little bit of timeline of inflammation after stroke. It will give us some information about fatigue, which is very common, but I have no plans at the moment to look at ethanocephaly.
Bill Gasiamis (35:53)
Fair enough. I appreciate your time. Thank you so much. All right, well, that brings us back to the end of the episode with Professor Vincent Dease on the PESLO trial results. My hope is that this conversation gives you more clarity, especially if you’re felt caught between personal stories, strong opinions, and a lot of uncertainty. The goal here isn’t to tell you what to do. It’s to help you ask better questions and make decisions with your eyes open alongside
a qualified healthcare professional who knows your situation. If this episode helped you, please do a couple of things. Subscribe on YouTube or follow the podcast on Spotify or Apple. Leave a review if you can. It really helps more stroke survivors find the show. And if you’ve had an experience you’re willing to share respectfully, positive, negative or mixed, add a comment. Those real-world perspectives help community feel less alone.
And if you’d like to support the podcast and keep it going, my book is at recoveryafterstroke.com/book. And you can join the Patreon at patreon.com/recoveryafterstroke. Thanks for being here with me. And remember you’re not alone in this recovery journey.
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed. All content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gassiamus.
Content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitator.
program based on our content. you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional. If you are experiencing a health emergency or think you might be, call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department. Medical information changes constantly. While we aim to provide current quality information in our content, we do not provide any guarantees and assume no legal liability or responsibility for the accuracy,
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The post PESTO Trial Results (Etanercept After Stroke) | Interview with Professor Vincent Thijs appeared first on Recovery After Stroke.
IntroductionAfter a stroke, recovery doesn’t end when rehab does. For many survivors, that’s when confusion begins.
Fatigue, brain fog, limited appointment time, and conflicting advice make it incredibly hard to know what actually helps. And while research is advancing rapidly, most survivors are left trying to piece together answers from podcasts, Facebook groups, and late-night Google searches.
That’s why this conversation with Jessica Dove London, founder of turnto.ai, matters.
The Hidden Problem in Stroke Recovery: Information OverloadStroke survivors aren’t lacking motivation. They’re drowning in disconnected information — and often too exhausted to process it.
Bill shares how, after stroke and brain surgery, even short bursts of research felt impossible. Jessica explains how parents and patients are expected to become full-time researchers — on top of surviving life-changing diagnoses.
Why “Just Ask Your Doctor” Isn’t EnoughDoctors care deeply. But no clinician can keep up with thousands of new stroke-related publications every week.
This gap leaves survivors feeling dismissed — not because professionals don’t care, but because systems aren’t built for rapid knowledge sharing.
“You shouldn’t have to rely on luck or Facebook groups to find something that could change your recovery.”
How Tunrto.ai Changes the Stroke Recovery Equationturnto.ai doesn’t replace doctors. It reduces the cognitive load on survivors.
Jessica explains how the platform:
- Reads thousands of new stroke resources weekly
- Filters by your stage of recovery and priorities
- Surfaces research, patient experience, and expert insight together
- Updates automatically as your needs change
For survivors managing fatigue, this alone is transformative.
Real Examples: From Spasticity to Stem CellsBill demonstrates how Tunrto.ai can instantly surface:
- Evidence and cautions around emerging treatments
- Patient experiences that add real-world context
- Research trends and unanswered questions
Instead of hours of searching, survivors gain clarity — and better conversations with their care teams.
Why This Restores Hope After StrokeHope doesn’t come from miracle cures.
It comes from visibility — knowing what exists, what’s emerging, and what’s worth asking about.
Tunrto.ai doesn’t promise answers.
It promises orientation — and that changes everything.
Conclusion & CTAIf you’re a stroke survivor who feels lost, overwhelmed, or unsure where to look next, tools like turnto.ai represent a new way forward.
???? Learn more at turnto.ai ???? Read Bill’s book at recoveryafterstroke.com/book ???? Support the podcast at patreon.com/recoveryafterstroke
You’re not alone — and better answers are closer than you think.
Footer disclaimer: This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
When Stroke Recovery Meets AI — Finding Clarity Faster with Jessica Dove LondonAfter stroke, finding answers shouldn’t depend on luck. Discover how AI is changing stroke recovery with Jessica Dove London.
Turnto.ai
Jessica’s LinkedIn
Support The Recovery After Stroke Podcast on Patreon
Highlights:
00:00 Introduction to the Journey
09:17 The Birth of Turn2.ai
19:07 Navigating Information Overload
27:10 The Onboarding Process Explained
35:28 Real-Life Applications and Success Stories
43:57 Empowering Patients Through Collaboration
Transcript:
Introduction to AI for stroke recovery
Bill Gasiamis (00:00)
Hey everyone, if you’ve ever struggled to find information about tools, treatments, or resources that could actually help you on your stroke recovery journey, this interview is a game-changer. One of the reasons I’m so passionate about doing this podcast is because of my purpose behind it. And that purpose is simple, to connect people with information, to connect people with tools, and to connect people with other people.
who truly understand what this journey is like. After a stroke, finding reliable up-to-date information is exhausting. You’re dealing with fatigue, brain fog, limited time, and often very little guidance beyond rehab. In today’s episode, you’re going to hear from Jessica Dove London, my new hero, the founder of Turnto.ai, a tool designed to help people like us find relevant stroke recovery information much
faster with less effort and far less energy delivered straight into your email inbox.
This is not a sponsored episode, but it is an episode about a solution I genuinely believe can change how stroke survivors find answers. Let’s get into it.
Bill Gasiamis (01:13)
Jessica Dove London, welcome to the podcast.
Jessica Dove London (01:16)
Great to be here Bill
Bill Gasiamis (01:17)
Sometimes when people send me emails, they go into the inbox and then they’re kind of like, I’ll look at that when I get back to it, when I get back to it, I get back to it. And I saw the email that you sent to me when you reached out to tell me about this amazing new product. And I thought, well, another amazing new product. There’s plenty of them. And usually the products that people kind of email me about are not relevant to Stroke. And people are just trying to get onto podcasts and all that kind of stuff. And I get it.
I’ve got no issue with that. If they’re relevant, I love sending new information to people. And one of the biggest challenges is determining what’s going to be the most helpful thing. How can I get things out that are not just another thing to talk about for the sake of talking about it? And then I didn’t respond to your email because it kind of goes down to the bottom of the list when all the other new ones come in and I’ll get to that. get to that. And then I saw a link in my
I comment on my LinkedIn and I thought, okay, this is familiar. I’ve seen this before. Let me check it out. And then I checked it out and thought, what an idiot. Why haven’t I contacted this person back quicker? This product is amazing. But before we talk about turnto.ai, give me a little bit of a background. I just want to get a sense of how it is that somebody comes up with the idea. I know what I’m going to do. I’m going to create a product that brings information to people.
more rapidly than ever before so that they can decrease the amount of time it takes to learn new and amazing things that are coming up about their condition.
Jessica Dove London (02:50)
Yeah, well, Bill, I did really like your podcast. That’s why I linked in you as well. I actually really liked your podcast because, you know, from where I come from, my son has a rare type of cerebral palsy. We actually don’t have a podcast like this where it’s a patient-led, you know, quest for finding the most useful, cutting-edge, relevant type information. So I really liked your channel. But I guess where do, where do, you know, where do a lot of these things come from?
from my lived experience. So when my son was 18 months old, he was diagnosed with a rare type of cerebral palsy, which is a little bit similar to Parkinson’s in his rare type. And when I went along, when he got diagnosed, I went along to his appointment, we knew he had something and I took a big research paper along systematic review and the doctor said, nothing you can do to help him. There’s no medication, surgery. She even told me, don’t bother reading those papers. And I just,
went on this journey that maybe a lot of people listening relate to when you are given something or you’re recovering, we have this huge life change of wondering what can I do to improve my son’s quality of life? And this real question, like, can I do anything? He’s amazing as he is, but we want to unlock the whole world for him. So I just went on this journey for years, finding treatments for him. And we just kept finding treatments and some were incredibly life impacting. And almost all of them were in the medical literature.
I just had to decipher them. I traveled the world, how did every world leader ended up studying neuroscience? We, we had a big YouTube channel where we shared our stories and I went to a huge conference with all these academics and this one world leader got up on the stage and she shared these incredible things coming for cerebral palsy, which actually is some relevance for stroke because there’s a lot of things that are free. They’re, sort of based on neuroplasticity. They’re very accessible. And I actually put my hand up and said, I shouldn’t have to fly around the world.
to learn about cutting edge things that could help my son or help people right now. you know, I guess I just live this experience that think many people do where all the cutting edge information can be all over the place. It can live in these research papers. It can live in the patient community. It can live in those incredible healthcare providers, but you have to sign or in clinical trials, you know, you don’t know, you have to piece it all together and then work out what’s relevant for me.
because you know, you could be sitting in a Facebook group, you could be listening to podcasts like this, but there’s so much time that is wasted and opportunity that is wasted while you’re trying to work out all these things. And for most people, you don’t have the world leading best healthcare providing team. Who knows everything doing that work for you. You have to do it on your own. So yeah, just live that problem of trying to find the cutting edge thing to help my son and you know,
For two years, it took me two years, we did find a whole lot of things.
Bill Gasiamis (05:40)
Yeah, two years. my gosh. And I mean, you’d give more than two years to your son, but it’s not about that. It’s about, doing it more quickly than two years. And from stroke perspective, do you have a stroke? Your brain doesn’t work properly. And then trying to sit there and get through, data, texts, videos, all that kind of stuff. I only was able to find like very small amounts of time in between.
⁓ feeling terrible most of the time. And then, ⁓ my gosh, I’m feeling good right now. And then it’s a priority. Like what do I do now that I’m feeling good for five minutes or 10 minutes or an hour? And for me, I, I was very keen to kind of, understand what I can do to support myself. And I knew for certain there was stuff that doctors weren’t delivering when able to deliver, didn’t know about, weren’t telling me that if I did the research that, and I found that I could implement something that was
easy for me to implement. for me, just perfect example would be nutrition. But in my conversations with doctors, when I asked them about, this something I can stop eating or start eating to help my brain? There was no information out. There’s probably nothing that wouldn’t matter. Just go about the treatment that we’re offering. And then as a mom or a parent, let’s say as a parent who has a child who has needs beyond the
quote unquote normal. It’s like, I’ve got to do all these extra things as a parent for my child. And I’ve got to have my life. I’ve got to do work and do all the things that parents do other than just parenting. And then somehow in there, I’ve got to find a flight to a conference to the other side of the world to hear a researcher maybe, and it’s only like a maybe share something that’ll be life-changing and supportive. And that’s kind of…
where I was at, was in the same place. And I thought, what I’ll do is I’ll create a conversation so that people can come to me. We can chat about it amongst other things, share stories. But then hopefully somebody on my YouTube channel says, do you know about this? And then that happened. And then that was a problem as well, because it’s like, I don’t know about this. I don’t even know where to begin to have a conversation about that with you. And if I needed to…
do the research on something that I was asked about will take ages. Now, one of the questions I had recently was, you know about methylene blue? And it’s this ridiculously kind of current topic about improving mitochondrial function for people. And as a result of that, people are finding out how you can take that and they’re taking it, which I wouldn’t recommend. And, and now I don’t…
The Birth of Turnto.ai
And now I’ve got to go and do, I don’t know how many searches to find all the data on Methylene Blue and I don’t know where they’re hiding. Read them, spend my entire time to read them, know, spend all my time to read them and then somehow kind of give people feedback on what I’ve read because that’s the role that I’ve decided to play. And now that’s what they’re expecting of me, but it takes ages. It’s forever. So then a little while later, what happened was you, you said, you know, have a look at turnto.ai.
check it out, tell me what you think. And then I did. And I was able to see the power of being able to have the research just sent to me in my inbox because I asked the AI to do it and it does it on a regular basis. And in a moment we’ll share about it. But then tell me a little bit about that transition for you from I’m traveling all over the world to nah, stuff that. I’m gonna do that from.
my office in Brisbane, in Australia. I’m not going to travel the whole world to find out this information. It’s not efficient enough. How do you move from mum with a problem to mum with a massive solution?
Jessica Dove London (09:31)
I mean, I guess, you know, those first five years I was just full-time mom and just doing, you know, we did all the things we did into all the therapy centers. And I, you know, I guess it’s really interesting that question you had. you have these really tricky questions or people ask you questions or you’re on a Facebook group and you see people talking about something you’ve never heard about. Yeah. I was just trying to pull those pieces together because I had the capacity to do that reading. Often it was late at night.
think one of the biggest challenges is often at the beginning of your journey, you don’t have the context. You don’t know the map that you’re even looking at. All you know is the impact it’s having immediately and the potential future impact and all those really hard things that you’re facing. so probably for those first five years, I was just pulling everything together messily and someone’s trying things, low risk things, all these different things, trying to get the best people to give us that advice.
However, you know, after those five years, I went to that REITs big conference and actually initially got an AI grant to do a research project, an AI research project. And I had a really good friend get lung cancer, stage four lung cancer and a good friend get MS. And they just had the same problem that I was having. And so I just knew there was something here. And so initially what we did is we actually just brought all the treatments that exist for cerebral palsy in one place. And there were over 220 treatments and most patient knew about five to 10. And these are,
science backed different protocol treatments people are doing and having some impact on. They having some evidence of things that are working. And so the problem is just really wild because you again, you’re told, I’ll just try these few things, but there’s actually legitimate scientific leading people with all these other ideas and some of it’s really working. So I just, I initially I did that. And then when my kids started school,
⁓ I decided to start a tech platform because I saw this as a really huge problem, but I knew I needed a world-class engineering team because I knew AI had to be part of this. And this was before all the LLM, all the open AI. don’t know if people’s familiar with AI, familiarity with AI is. Before all of this amazing sort of last few years, I was using sort of different, more sort of machine learning to try and just bring the data in and categorize it.
but really just trying to make it accessible for people.
Bill Gasiamis (11:51)
Before we continue, want to pause for just a moment. If you’ve been listening to this conversation and thinking, I don’t have the energy to search research papers, Facebook groups, podcasts, and forums just to find one useful thing, you’re not alone.
exact problem is why this episode matters. What Jessica has built with turnto.ai is a way to reduce the mental and physical effort it takes to stay informed.
after a stroke. Instead of searching endlessly, relevant information is found for you based on where you are in your recovery and sent straight to your inbox. There’s a listener discount available which you’ll find in the show notes and I’ve also created a page with more details at recoveryafterstroke.com/turnto that’s recoveryafterstroke.com/turnto
But stay around, listen to the rest of this episode before you go and check out recoveryafterstroke.com/turnto, to get the discount code.
All right, let’s get back to the conversation.
Jessica Dove London (12:55)
yeah, I guess it was definitely a journey I didn’t go from, know, the first few years it was just heads down, fully in care mode, trying to deliver all the care, trying to access all the experts. And then slowly I just went on this journey to eventually being full time running this team of amazing people from the tech space. I knew this should be a tech solution because
You know, I think one of the unfortunate things is, is amazing groups out there, amazing orgs out there, but they often are technology specialists. So I don’t build things that can continue to be relevant. They often make really high quality resources and then the resources are actually not relevant even for you doing a search. You know, you do a search and then what happens in a month when there’s something new that’s come out about that. So yeah, we’re on that journey and probably the cornerstone of what we’ve built is this belief we have that all the voices matter.
And so research matters, patient experience matter, leading professionals, experts matter. And actually they sometimes can hold different pieces of the puzzle. probably unlike other tools that you’ll see out there and when we show what we’ve built and how we build it, that’s the key thing. The other thing we believe is that new information matters and it’s too much work for one person, let alone a doctor, a specialist can’t even stay up to date on the disease because
know, stroke is actually got an unbelievable amount of things that are created every week. can be over 2000 new things every week in stroke that are being published from expert interviews to new research to clinical trials to patient discussions to incredible events. It’s just wild. Like there’s actually so much incredible stuff happening. But you can’t find it all and you can’t read it all.
Bill Gasiamis (14:39)
Yeah, absolutely. And that’s why when I had a little bit of a play with Tony, with Turn 2…
It was cool because I’m not interested in everything that stroke has to offer me. The research has taught me, but I’m interested in certain things and I’m interested on things specifically that my followers and listeners on my podcast want to know about, you know, so I’d love to be able to bring that to them. So then I had a bit of a play and then we’re going to move to that. I’m going to share the screen in a minute and we’ll talk about that actual screen and the solution, but there is an onboarding process, which we’re not going to.
show today but can we talk about it a little bit just to give people a sense of how people they’ll come across turn to and then they’ll go okay ⁓ i want to start and then i want to make sure i get information information for just the stuff that i’m interested in how does the onboarding work
Jessica Dove London (15:21)
Yeah.
Yeah, I guess this is again, thing of like, you know, we’ve built a tool that you’re about to see where we want to keep you up to date, read every single new thing and just give you a handful of things. So how do we do that? And so the way we designed this is to find out what’s on top right now. If you’ve just had a stroke, you’re in a very different stage to one year post, two year post, five year post. the reality is of a patient journey is
Bill Gasiamis (15:40)
Hmm.
Jessica Dove London (16:02)
you are always changing, know, you know, we have things, new things come up and then you suddenly feel like you’re at the beginning again or new symptoms come up and you get very confused. Like, is this related? I’m like, I have to talk to my doctor. What’s happening here? I’ve just started a new medication. There’s always things happening. So we ask just five questions and the questions are just all about right now. and sort of some key different attributes around your recovery journey or your journey because
Sometimes some information is less relevant for certain groups than others. I’m in a cerebral palsy space, your subtype really matters because it’s actually completely different neurology. And so you might find this incredible breakthrough and it just not be relevant for the subtype, which is actually the case for my son. My son has a very rare subtype, which makes like, you know, anything published on his subtype is like gold because you’re like, wow, a new sort of thing has come out. Yeah. So what we’ve done is,
made the onboarding about what are you facing this week with your stroke recovery? You know, what is the symptom you’re worried about? And the thing about the tool is, you know, that week it’ll, it’ll go and read the thousands of new things and it will then match you according to what’s on top for you. And it’ll also go and do specific searches on your location. So if you’re living in Sydney, you’re living in anyway, Los Angeles, London, it’ll search for that week for stroke.
what is happening in that city. And the reason that’s so helpful sometimes is there are groups, there’s new clinical trials, there’s so many things that are all these incredible people are putting on webinars, like online support, online educational things. So we match you to all of those things every single week. But yeah, really it’s what are you doing with dealing with right now? And then if you get to Sunday, cause that’s when we send our update out and you’ve got something new that’s come up, you just can talk or type and say,
hey, I’m not interested, I’m now interested in keto and I’m interested in this and it will just make you, it’ll create new priorities. Cause that’s the real journey of living with a competition.
Bill Gasiamis (18:05)
I love that it does change at the beginning. It was all about fatigue. How do I improve my fatigue? And then later on it was like, how do I improve my sleep? And then later on it was after, you know, after brain surgery, it’s a completely different, uh, um, inquiries that I was making on YouTube, Google, wherever I was like, you know, how do I overcome a brain surgery, all that kind of stuff. Um, and then also at the beginning, some of those problems I solved like, then
Jessica Dove London (18:25)
Yeah. Yeah.
Exactly.
Bill Gasiamis (18:35)
I thought, okay, what’s the next one I need to solve?
Jessica Dove London (18:38)
Yeah,
that’s right. The funny thing about health information is though, cause one of the things we’ve built, if let’s say you’ve tried something though, and there has been new research that’s come out about post impact, you may get that in your update because, know, let’s say you did a surgery or you did sort of some sort of intervention there. Sometimes studies coming out about five years post that intervention. And actually that’s really useful for you because what if it, this new potential thing you should be testing for? I think the key to what we,
Navigating Information OverloadHave learned from building these tools is you don’t actually know what you don’t know. And like, I think most people here have had that experience of sitting in a Facebook group, listening to your podcast. You learn something new and you go, ⁓ I wish I knew this. ⁓ it feels like luck. And I think that is just a really challenging thing because your health is so much more important than luck, but it can feel like that. You know, I can literally remember when I’ve been in a Facebook group and someone first mentioned this surgery that we ended up doing.
took us a year to make the decision, but it was like, ⁓ my goodness, what is this they’re talking about? And then I went to my, our surgeon and the surgeon was very, very dismissive even though there was huge body of literature behind this particular intervention. So then I had to find another specialist and so it begins.
Bill Gasiamis (19:53)
Yeah.
That’s a great thing too, as well. Like if you could be facing roadblocks that are based on other people and that, and then if you don’t have like some kind of ammunition to take to them to say, but you know, how about this? That’s one of the challenges. Cause then, you know, they kind of say, well, there’s no data. I haven’t seen it. If I haven’t seen, I’m a doctor. Like, you know, what do you know? How are you going to be the perfect person that makes the decision?
gatekeepers of information bother the hell out of me. Like I hate people who have information and think that because they have it, that they sort of hold the key to how that information is disseminated. But then also people who discourage people from doing searches on what may help them, you know, this is my life, it’s my condition. I wanna be able to find things to help me to make my life better. So I don’t have to be in the hospital system so I can go back to life.
so I can improve things. So luck is not part of the equation. If I didn’t jump into that Facebook group today and didn’t see that post, I would have missed it for years maybe.
Jessica Dove London (20:56)
And this stuff just is always happening. It is pretty wild. And again, the reality is that there is just information is everywhere. And I think even for people who favor research, research takes years to come out. And who decides what should be researched? When we did our first research project, when I started this work, one of the things we did is we collected patient stories of treatment reviews.
popular treatment at the time, had no research behind it in the cerebral palsy space, but very low risk. It was like an intensive physio type protocol. And I actually shared this with a whole bunch of academics and a world leader came up to me and said, she’s now going to study this treatment. Because again, you know, are not academics sitting in Facebook groups.
or they’re not always, know, they’re not, you know, it takes years for these things to even begin to be getting researched. However, at the same time, are, like research has been, can be very, very helpful and it can also, you know, there are definitely a variety of things out there. Some things are snake oil, some things are, some things can look like snake oil and actually be the next best thing because there’s actually a sign, you know, reason why it’s working or we don’t know why it’s working. It is very hard to decide for all of this. Yeah.
Bill Gasiamis (22:17)
used to be hard. Now it’s a lot easier. Thank you very much. So I’m going to share my screen now so we can have a bit of a look at what we’re talking about.
Jessica Dove London (22:19)
Yeah.
Bill Gasiamis (22:26)
so this is the screen. Now, I’ve purposely resisted from clicking on the first two weekly updates at the top because I wanna kind of tell people what happened, why they’re there. But then I wanna go all the way down to the very first catch up that ⁓ I had with the software after I was onboarded, after I answered all the questions and did all that stuff.
It came to me, it said, these are some things that we found for you. And, ⁓ it said it found 18 things. It gave me this, ⁓ bar chart thingy, me jiggy here, which is not a bar chart. It’s actually an audio file telling me what it found. ⁓ and it gave me top insights, six things, and it told me one thing that was near me now, just for context.
said, I’m in Australia, in Melbourne, but I said I was in New York, New York. Okay. Just so that I can kind of get a sense of what happens when people from ⁓ other places in the world do a search. I kind of have an idea that if I had done the same thing, what type of results I would have got here. But the reason I did that is because I believe it or not, stroke survivors have reached out to me from New York and said, do I know any stroke survivors in New York? I’m in Australia, in Melbourne. Like technically that answer should be no.
but I know heaps of people in other areas. But what I don’t know is what’s happening in those other areas. And what Tony found was ⁓ groups, meetups or something along those lines that were happening in New York for people. So I found that really interesting. So I could immediately do that search and get that
I click near you, all right, I’m not in New York guys, but if I click near you, look what it found. Hybrid event stroke support groups at Mount Sinai, Sinai, I know I butchered that, but it’s.
probably an event that is happening ⁓ in that area. Union Square, I think I know what that is. I think that is in Manhattan. And then it gives its thoughts. It says, this group could help you connect with survivors for emotional regulation and post-traumatic growth. Like, what? That was like a few minutes of searching immediately now. If I had even moved.
to New York, it was a brand new place where I’m living and I want to connect with people, I’ve automatically found that. mean, that is fantastic.
Jessica Dove London (24:58)
So Bill, when you get your update, you go to the, I found you, you can actually flick through all of the updates. And for people as well, can, if you go to click on what I found you, or if you just go back into it and then you can actually flick through them all. So you can flick through the research, the expert interviews, the patient discussions, the online events. And also for people who like email, you can get it all in an email. That’s sort of an easier experience for you, but you can just really quickly flick.
Bill Gasiamis (25:06)
what I found.
Yeah.
Jessica Dove London (25:28)
through all the relevant things that have found you. And it’s just matching to what you’ve said. So you would have said all those different sort of key things that are important to you. And then the whole thing we believe is we try not to use AI to give you necessarily a generic answer. We’re trying to use AI to find you the most interesting resources that already exist.
Bill Gasiamis (25:30)
Yeah.
Yeah.
Yeah, I love it. this one, this week’s daily update. So I’ve had a few of those updates and I’ve clicked a lot of them. And they, as I was going through my mind a few weeks after I logged in for the first time, I would then put in a new search. And then the most recent email that I got or update that I got was this one here. And
It has found 17 new things for me and the top insights have been updated because one of the additional searches that I put in later after I did the onboarding was about hand spasticity. And then also I did, and look at this, I did a podcast with,
a stroke survivor called Jonathan and it has already found it and brought that to my attention as if I didn’t know about it. And Jonathan Aravello shares his story. That’s an interview that I did with a stroke survivor a little while ago and it already knows that it’s there. And then if you scroll down, I found if you scroll down, you just go through other things that people are talking about. Vivastim is a new product that
stroke survivors are talking about because it’s an implantable and it attaches to autonomic, to the vagus nerve and somehow it supports people to improve function and it helps with neuroplasticity and all that kind of stuff. I’m just stunned by all the information that came to me and…
The Onboarding Process ExplainedAnd I had a question this week in my YouTube channel. Let me tell you what it is. And let’s see if we can just do a search and find some information on that product. STC30 stem cell treatment. I’ve got no idea where to start. How would I answer that question for the person? They asked me a lovely question. What can you say about the effectiveness of STC30 stem cell treatment? So I’m getting asked like I’m an expert in these areas.
I don’t mind, but that’s the kind of information that people are looking for. They’re going, how do I find information about that thing when nobody else out there will talk to me about it? They’re kind of like doing a Hail Mary shot. They’re going, I’m going to ask this guy on the podcast, maybe he knows about stem cells. Who would know about that? But check this out. If I do ask a question, if I say,tell me.
about ST.
C 30.
stem cells. I’m going to generate.
And I love this part about it too, the searching and the thinking that it does. ⁓ What specific outcomes or improvements are you hoping to achieve? And I’ll just say. ⁓
Less brain fatigue.
That’s brain fatigue.
Jessica Dove London (28:52)
It’s okay. It’s
actually you can make spelling mistakes.
Bill Gasiamis (28:56)
It knows it’s smarter than me.
Jessica Dove London (28:58)
mean, AI is very good at that. And probably for people watching this, you what would be the difference of this with ChatGPT? Because ChatGPT is amazing and it’s going to get better and better. But the difference of people to understand is we actually have an intelligent data set on stroke. So what we’ve done is we’ve taken the past 10 years of all the stroke information. So from research papers, we’ve actually gone through YouTube and found webinars with experts. We’ve gone through patient discussions, we’ve collected resources. And the reason we’ve done this is because
Bill Gasiamis (29:00)
Yeah.
Jessica Dove London (29:27)
Again, I really love Chatjibity. I highly recommend people use it. However, the difference is our belief is all voices matter. So when you ask questions, we’re actually going to give you answers from experts, from patients and from research. So that would be the difference of this tool. And the reason it can take probably up to a minute to find you an answer is Stroke actually has, I Stroke has 450,000 resources in the database that we built for Stroke. So Stroke’s a really, really big database.
I mean, it’s trying to look for that answer and then it’s trying to match you to it. I think that’s just, it hasn’t actually restarted. It’s just.
Bill Gasiamis (30:05)
It’s doing its thinking. It did seventy nine thousand searches.
Jessica Dove London (30:09)
And it’s trying to just match it to your profile, give you that answer. And it can get, there we go.
Bill Gasiamis (30:15)
Wow.
And then here we go, ST stem cells is marketed as a supplement that claims to support cellular repair and regeneration, but its efficacy and safety are not well established in clinical research. So that’s like a little bit of ⁓ initial information. And then here you go, the patient view, which is so important in this, isn’t it? It’s important to find people who may have had a procedure and have something to share about it. That’s so, so helpful.
And then what the research says, how many research papers has it got here? Wow. Look at that one, two, three, four, five, six, seven already research papers. And they’ll all have links to other research papers that, you know, made those ⁓ studies that sort of give those studies the initial information to get the ball rolling on them. And then,
systemic review here which check
Jessica Dove London (31:15)
Sometimes there’s not
actually even a full paper on that. I actually don’t know this topic, obviously, but if you go up to the summary, might even say, sometimes you might learn, there’s actually not specific papers on this. However, here are papers that are relevant. you click show style. It’s on the research here. you click post. So if you go down to what research says.
Bill Gasiamis (31:31)
Where’s the summary? do I do that?
Jessica Dove London (31:37)
You just scroll down, yep. And then you click show summary, see that pink little, but here we go. It shows you research trends, key findings, unknowns and mixed opinions, and all of it’s referenced. And that’s just because again, we’re trying to show patients as quickly as possible. Is there information? Is there mixed opinions? Because I think sometimes there’s been a tendency to have one answer to these things and there isn’t one answer. And sometimes there isn’t papers, you know? So we actually have trained our tool to
Bill Gasiamis (32:01)
Yeah. Yeah.
Jessica Dove London (32:07)
to sometimes not make up answers. And so, you know, we tested it on very rare protocols and it often says, hey, there is no protocol for your subtype. However, here are protocols that are being studied in other sort of use cases.
Bill Gasiamis (32:19)
Yeah. And then if I do this view source, this is cool too, right? It just goes directly to the article PubMed article. And you can read that. That’s brilliant. Okay. So then, ⁓
And look, here we go again. It’s found my podcast two times here. ⁓ that is brilliant. love it. And then I did this. went, I think I went back and then I asked the question here because I had like a thing that popped up in my brain today. Right. Somebody kind of said, Hey, have you heard about that? And, ⁓ somebody did that. And, ⁓ and then I just can go.
immediately into that and go okay where is it i’m just trying to search on my
Jessica Dove London (33:05)
While you’re
searching, guess the thing that we built with our weekly tool as well, so let’s say you really want to learn about STC 30. I think that’s it’s called. You can just put that in your weekly, your profile, and every week our tool will look for that specific topic because that’s the other thing. So if you click strengthen my profile, can you see that purple box down at the bottom? Yep. If you click on strength, you click on that, you can just say, you can type anything new in here and it’s going to then keep searching it.
Bill Gasiamis (33:20)
How do I do that? Why would I do that?
⁓ yeah?
There you go, there’s all of my data that I put in at the beginning, New York, New York, early 50s age group, approximately 13 years post stroke, all the topics that I was interested in. And where would I put that? Would I put that here, add new?
Jessica Dove London (33:34)
Or if you
Yeah, yeah. And if you start, then we’ll know that that’s at the top. Yeah. But you can, to be act, to actually be honest, you can actually, if you go back, I’ll show you an easier way. So at the end of every weekly update, there’s a huge box that just says, me anything new. but if you go back, I’ll show you something on the dashboard as well. Yep. So if you see, do you see want to do a deep dive, see how this says update me the top on the right.
Bill Gasiamis (33:52)
⁓
dashboard.
Jessica Dove London (34:13)
next to ask, yeah, if you just talk at it and say, I’m now interested in this as a priority, it’ll then put it at the top for your next week’s update.
Bill Gasiamis (34:13)
⁓
⁓ okay. Next question I had a day ago, somebody wanted to know about red light therapy. So why don’t I do that? If I press that and then do that, right? Click this button here. Is that the one?
Jessica Dove London (34:31)
Or
you can talk or type, whatever works for you.
Bill Gasiamis (34:34)
I’m gonna talk, let’s see if it does.
Jessica Dove London (34:36)
Let’s
see if it works with the podcast, whether it’s taken them. Yeah, I think it’s not working just because you’re doing a podcast, because you’re using the speaker.
Bill Gasiamis (34:39)
Alright.
⁓ no.
Okay,
so I’ll type I’ll just say ⁓ red light therapy.
Jessica Dove London (34:53)
This won’t give you an answer. This is just going to go on to your weekly update now, Bill.
Bill Gasiamis (34:58)
Okay, okay, so if I if I do that
Jessica Dove London (34:59)
Yeah. And now,
yep. So now it’s actually just added it to your health profile whenever you want to know. So for your next Sunday’s update, you’re now going to have red light therapy in there. But yeah, but the reason we put the voice box is it’s actually sometimes useful to talk a bit more like, Hey, I’m thinking about doing red light therapy. I’m really worried about this, this, this, just actually giving more context. Cause at the of the day, if there’s a thousand new things a week in stroke, you know, this is just a matter of how do you, how does
Bill Gasiamis (35:11)
my gosh, that’s ugly.
Jessica Dove London (35:28)
How does any sort of system get you what’s relevant?
AI for Stroke Recovery – Real-Life Applications and Success StoriesBill Gasiamis (35:32)
It’s a game changer. I’m telling you now. ⁓ I mean, you know that, I don’t know why I’m telling you, but you know that this is the one that was the weirdest thing, methylene blue. Do know it’s a food dye? Sorry. No, it’s not a food dye. It’s a clothes dye. I think it’s like a Indigo clothes dye and people take it. And it’s very risky because, ⁓ it’s very few people that, ⁓ actually experiencing the exact condition that’s related to, ⁓
Jessica Dove London (35:41)
Okay. Really?
Bill Gasiamis (36:01)
neurological dysfunction or mitochondrial dysfunction that methylene blue can help for. And then if you take methylene blue and you take too much of it, ⁓ then it decreases mitochondrial function if you don’t have a need for it. And there’s no way of knowing whether you have mitochondrial dysfunction unless you have the right kind of doctor take you through that process and determine whether your mitochondria are functioning properly. I mean, not many people have access to that, but this is what happened when I, ⁓
put that in there, came up with a whole bunch of information again. This is just like the most obscure thing that everyone’s talking about now. And unfortunately, people are taking Methylene Blue ⁓ without knowing whether or not they’re a candidate. And when they request information from me, I want to be able to give them accurate information and don’t be like that.
person who holds onto the data and then doesn’t release it. But I’m confident it could say if you’re somebody considering taking Methylene Blue, do not take Methylene Blue. is so, ⁓ it’s such a nuanced bit of like tool. It’s such a nuanced tool and you need to know like the most amazing people in that space and there’s probably only two of them in the world. So it’s like great that everyone’s talking about it.
But I feel really confident now about having the information in front of me to share with stroke survivors. And I would not have felt like that if this tool did not exist.
Jessica Dove London (37:34)
Again, you could also put that into your weekly updates so that it keeps looking for that particular topic. Because I guess the challenge, the reality is, and the challenge for all of us is we hear these things or we don’t even know things exist. And I think, you know, there is the reality. Like I think you’re always looking for that one thing as well, right? Particularly with any sort of neuro condition, you’re like, is there something really big I’m missing?
Bill Gasiamis (37:40)
Yeah.
you
Jessica Dove London (38:00)
You know, is there something that could really improve when you’re facing something that maybe, maybe there’s a symptom that won’t go away or, you know, in cerebral palsy, it’s a lifelong condition. So you’re all often like, looking for that. Is there something we’re missing kind of experience or there’s a new topic. like just to give you one example, which is a real example is I was worried about my son having osteoporosis.
So I told the tool, I’m worried about my son having osteoporosis. I went to the doctor’s consultant and the consultant said, don’t worry, we don’t need to scan. He said we’re going try and them. But the doctor said, don’t worry. And then the week later, my son got very bad knee pain. We ended up doing an x-ray, which showed potential osteoporosis. I pushed and we got a dextrose. And
doctor rings me and he says, yes, your son has osteoporosis. And I said, what can we do to treat this? And he actually told me.
we wait for children to break their bones when they have cerebral palsy. Now, if you’re a wheelchair user and you break a bone, that could be a year of rehab for your life. Now I’d put this into the tool and in the period of two to three weeks, it had found me two papers studying children with osteoporosis with cerebral palsy and an expert interview. I said to the doctor, why are we not testing his calcium? Why are we not looking at his vitamin D? And the doctor said, you’re right. We need to test those levels. Now like,
One, the reality is that consultant just can’t stay to date. Like I actually understand he’s busy. He’s actually serving lots of different conditions. And so like my passion and my hope is that we can do that work for people. because I have organized my son to get these blood tests now because we’re being proactive. Cause I don’t want him to break, break his bones. You know, I care more than anybody. He, know, it’s quality of life. And also when you have a label like cerebral palsy or stroke,
Sometimes things can be disregarded, you know, it’s really, they think, ⁓ this is complex. We don’t really know. Well, maybe we just haven’t read the paper from three months ago or that really useful webinar from a conference that was last week. I’m talking about that exact symptom that is legitimate. So yeah, that’s my real passion, Bill is empowering people because, know, I think we all have these stories of being disregarded or.
You know, and I do have a lot of hope for the future and I love medical professionals. I have some incredible people that I work with, but curiosity is just not usually the experience of most professionals when they’re, you know, they are just humans doing their best overwhelmed and usually not fully up to date.
Bill Gasiamis (40:39)
Yep. And they also don’t know what they don’t know. It’s no different to us, right? If they have, if it hasn’t fallen onto their lap and if they haven’t had a lucky day where they saw an article or, know, they’re in the same boat and as frustrating as it can be, and as much as you want to kind of dude, you know, you’re the guy leading my, my healthcare, you know, like I, I’m entrusting you with more than just this blasé attitude at that, like
Jessica Dove London (40:43)
Yes!
That’s right.
Bill Gasiamis (41:06)
And that’s not helpful either. I totally get it as well.
Jessica Dove London (41:08)
That’s right. That’s right. You
want to do it together. You know, I was on a call this week with not someone from stroke or cerebral palsy, but it was a consult specialist from another disease. I won’t mention what disease, but they said to me on the call, they picked up something from their desk and they said, I have a journal sitting here from early October and I’ve been trying to read it every day. But this person is a surgeon and is very, very busy. And they were telling me to build my tool, like this tool for doctors. She was like,
We can’t stay up to date and we really want to, and we do. Like she will read that paper. But it’s such a burden on healthcare professionals. So my real hope in the future is that we go to our professionals and we look together at the evidence. know, there is that, cause you know, the truth is some world leaders obviously in a lot of professionals know a lot more and their lens is very useful of going, actually that is interesting. this is something we hadn’t thought about, or let’s look at this. Just that there’s time limitation.
All right, sound good.
Bill Gasiamis (42:08)
I know they care. And when you’re a surgeon and somebody says, ⁓ emergency just rocked up through the door and it’s 1am, they drop everything and they go right. So then you want to give that person a break as well and say to my care what what do you want to sleep tomorrow morning? Okay, no worries, by all means sleep. And it makes complete sense why a journal could be on somebody’s desk and not get read. I mean, that happens with my taxes. They’re there forever.
Jessica Dove London (42:19)
Yeah.
actually.
Bill Gasiamis (42:35)
and they need to get done. And I can come up with a million things that I prioritize over that thing because it’s actually a priority. I’m not saying that I don’t pay my taxes. I definitely do. But with a surgeon, you can understand where they would rather spend their time is helping people get through that particular situation that they’re finding themselves in. the, what is it like? It’s like, ⁓ by the way, there’s this journal there yet.
I’m going to spend an hour reading that. what somebody needs surgery. No problem. Let’s go. I totally get it. I get it. And this tool kind of enables patients, I think, to have more information and take that to a meeting with a surgeon with a clinical, you know, in a clinical setting, wherever they are, and begin a conversation that perhaps wouldn’t have begun again. That information then does go kind of in that
Jessica Dove London (43:09)
That’s right.
Bill Gasiamis (43:31)
either at the front of the mind of that person or at the back of the mind of that person so that they can access it when they need it and then go, you know, I’m going to be curious about that. I’m going to go down that path. Or if you take that to your doctor or a clinician or someone in that space and they say, don’t worry about that, then that’s also a good sign for I need to find a new doctor. I need to find a new clinician, someone who’s going to take the feedback and the information that I bring them seriously.
Empowering Patients Through CollaborationJessica Dove London (43:57)
Yeah. 100%. 100%. I think it’s that collaboration. know, we have a person on our team right now. He’s not the most knowledgeable, but just, and he isn’t the specialist, but he’s very supportive and really wants to look at evidence and is always helping us find the right specialist. And it’s just an incredibly wonderful experience to have someone who’s on that side of always validating. then she knows that we’re reading more than she is on some of these topics. And I want to help.
don’t want to be doing this alone. Like that’s the other thing you want. You want people to help you and have the answers and give you better. You know, you don’t want to be doing the wrong treatment or wasting that, you know, I always think you can’t try everything even if lots of things worked. But you can do things that don’t work or you can do things that are risky. And I think for so long, has been very risk averse. However, there are so many treatments that are
You know, have huge outcomes. You know, we, one of the things we did with our son, he started school in continent. And I listened to a podcast interviewing a world leader out of UCLA. They, um, you know, we’ve actually got a lot of these stories, barely we’ve been able to talk before about some of the things we’ve tried, but it’s a, an external device giving, uh, this is a different one building what we talked about, but it’s a device you put on your back. And it was this new breakthrough about, uh, the spine is connected to motor planning and he.
within two days became fully continent. And this is a $300 machine. It was free. The protocol was free and he’s completely continent at school. Like that’s his whole life changed. And the reason I did it is because I listened to a podcast with a world leader and it’s heaps of evidence. There just wasn’t yet evidence in cerebral palsy because they just brought it to cerebral palsy from spinal cord injury. And his whole life changed and
I actually have a friend who’s a world leading researcher in this space in cerebral palsy and me and him have spoken about this technology and it’s very exciting. But not everyone can go and talk to this world leading research to go, yeah, this is valid. This makes total sense. You should be trying this. And so how many people are incontinent because of that one particular insight that’s not being shared. know, there’s just so many stories like this of things that are low risk, that have really good. ⁓
potential to change people’s lives.
Bill Gasiamis (46:17)
Yeah, that’s brilliant. We’re going to obviously get the link to that particular device and we’re going to put it in the show notes.
Jessica Dove London (46:23)
We should do a session just on devices. I love technology. ⁓
Bill Gasiamis (46:28)
Yeah, but that’s
the beauty of it, right? We wouldn’t have had that information hadn’t it been for this particular product coming up in the search in the results. ⁓
Jessica Dove London (46:37)
That’s right. So one of the things I tell Tony
is I want new technology and new equipment. And so last week in my update, it found me a patient comment of someone who’s built a device, a hand device to hold things and they have a web link, but they themselves went and built this device. All the plans are online. And because I’m obsessed with new technology, it’s doing that for me. I’m also obsessed with like new wheelchairs and new, you know, know, new scooters and it’s all.
Bill Gasiamis (46:44)
you
Jessica Dove London (47:06)
I love this, like that’s one of my personal sort of like things I’m always looking for. But again, that tool is doing some of that, a lot of that lifting for me, because I can’t read it all.
Bill Gasiamis (47:17)
Yeah, brilliant. love it. I can’t read it all either. And I definitely don’t know what the obscure things are that people ask for my podcast. And I’m expected to know which is a really, it’s a really lovely thing. Like, you know, like people are coming to me for advice and I want to, I want to be the guy I want to be the connector. want to see people to read.
Jessica Dove London (47:37)
You can actually
share that page when you ask Tony, you can do a URL and share that for your listeners so they can get access to it. Just so you know the bottom so they can just share it and see if it’s useful or not. And that’s the thing like it’s more about is it useful or not for you.
Bill Gasiamis (47:44)
Yeah, I will be doing that.
Yeah, I think what I’ll be doing is answering people’s questions because they’re so lovely to ask them. What I’ll do is I’ll do a search for them on tourney. I’ll record the whole thing and I’ll tell them, you know, one of my stroke survivors who listens to my podcast wants to know about this information. Give me the data. We’ll come up with some research. I’ll answer the question. And then like, I’ll feel amazing that that happened relatively quickly as well, which is going to before for me to actually
my gosh, I just had that feeling where I’m like that doctor who gets asked these questions and doesn’t know. So says, my God, I’m going to leave that unanswered or or I’ll tell them there’s nothing about that that we can talk about because there’s no information. I just felt like that doctor where somebody asked him the question and I was like, I’ve got no idea what you’re talking about. Just keep doing what you’re doing or what I’m telling you to do. Whereas now that goes away. That feeling of
I don’t think I can help you, goes away. We might not be able to have the answers. We might find out that in fact there is nothing available yet in that space, right? So that’s kind of where Tony will also go. It’ll go, well, there’s nothing here.
Jessica Dove London (49:04)
and might just find things that are related because that’s the other thing. Like if I’d asked Tony about this, this technology, it’s called spinal. It’s confusing because there’s a few things called spinal stimulation, but it’s trans trans. I’m not going to, I’ll give, can put it in a note. So it’s a technical term, but in the cerebral palsy community, call it spinal stim. Yeah. If I’d put that in, nothing would come back because it was only last year that two research papers had come out about this. However, it would find related things because there is a lot of related concepts.
that particular technology and that thinking. Like there was actually a surgery of how that was using the same, doing the same amount of healing. But the benefit of obviously using a machine that you put on your back is it’s not, or brain surgery, which is hugely risky or implanting devices and all that. It’s just not always answers. There’s not always evidence, but there is things, there’s not much happening. And that’s probably my last thought to share is just.
Bill Gasiamis (49:49)
Yeah.
Jessica Dove London (49:57)
There is so much happening and I think you’ve lived this bill, like there is a lot of new technologies, new treatments, lifestyles. There’s so much happening in the recovery space and you know, there’s a lot of hope to be had. And that’s one of my biggest feelings of this tool when I use it for myself is hope. literally it found me an advantage. my son is very adventurous and wants to be a, I do not want him to be this, but he wants to be like a wheelchair stunt person.
And there was an online event about teenagers getting into skate parks. And I just had such hope that there’s all these people out there trying to make like a Yeah, I didn’t attend because I’m like, he’s only 10. I’m like, no, we can’t do this yet.
Bill Gasiamis (50:40)
I love that you don’t want to
I love that you don’t want him to break his arm roller skating.
Jessica Dove London (50:47)
You
Bill Gasiamis (50:48)
I love it. love it. That’s what normal, normal moms do. Right. But there you go. Yeah. Oh, of course it does. That’s Yeah, I love it. Absolutely. Um, that’s exactly why I like Tony because it will do things that we’ve struggled to do for a long time is find resources, information, all that kind of thing. And it’ll do it quickly and it’ll do it.
Jessica Dove London (50:51)
That’s right. dad does take him to the skate park. His dad takes him. And he goes down. It’s terrible. It’s so scary.
Bill Gasiamis (51:15)
specifically for you and it’ll send it to your inbox. You don’t have to go anywhere. Now there will be a link for people to click on and go across and get a little discount or some kind of like a, can we talk about that briefly?
Jessica Dove London (51:31)
Yeah, yeah. So we, this is a low cost AI tool. So we charge two US dollars a week for that weekly update. And it actually costs us $2.80 per update just because we read a million tokens per person to generate that. And we want to provide the most valuable, those value and the most accessible, valuable focus. Not everybody can be spending $30, $40 a month on the really advanced AI tools either.
But you can try it for free. So you can just try it for three weeks and see if it’s valuable because end of the day, that’s all we want. And you know, we want your feedback. If you’re like, I’d love it to do this, to do that. We’re a team that really just want to, you know, that’s the beauty of being a technology team is we can build some of these solutions pretty easily. So yeah, you can go through the link and get a 10 % discount, but you can also just try it for free and see if this is valuable for you.
Bill Gasiamis (52:22)
Yeah, I tried it for free for three weeks and the it’s like having subscribed to the full thing because you’ve got everything that it can possibly do in that three weeks. I’ve got a really good feel for it. So I’ll have that linked as well in the show notes. And then if you’re watching this video and you want to get a sense of ⁓ what this thing is like, what it’s like when I use it, et cetera, I’ll be doing my answers to red light therapy and STC 30.
Jessica Dove London (52:29)
Yeah, 100%. That’s right. That’s right.
Bill Gasiamis (52:49)
I’ll be doing all those types of videos. People will be able to see it. The website is turnto.ai. So it’s T-U-R-N-T-O.ai. I’ll have the links in the show notes for that as well. Jessica, thank you so much for reaching out, persevering when I was being a little bit slack with my inbox and then, yeah, kind of developing this tool with your team and bringing it to us. really appreciate it.
that you’ve done that and that it’s there because it’s definitely going to improve. It’s going to decrease the amount of time that I take to find information to help me as well because I’m a stroke survivor and I’ve got my own stuff I go through. So thank you for that.
Jessica Dove London (53:30)
been great to be here,
Bill Gasiamis (53:31)
You’ve just heard how AI can fundamentally change the way stroke survivors find recovery information, not by replacing doctors, but by reducing overwhelm and helping us ask better questions. In this episode, we explored why stroke recovery information feels so scattered, how fatigue and brain fog makes searching harder and how tools like turnto.ai can bring clarity, speed and hope back into the process. If this conversation resonated with you,
I encourage you to explore the tool for yourself. You’ll find a listener discount code in the show notes. More information at recoveryafterstroke.com/turnto, and remember this podcast exists so that no stroke survivor ever has to feel like they’re doing this alone.
If you would like to support the work that I do here, you can support me on Patreon at patreon.com/recoveryafterstroke. Your support helps me continue recording these conversations and working toward my goal of a thousand episodes. Thanks for listening. I’ll see you in the next episode.
The post Tunrto.ai for Stroke Recovery: Why This Tool Is a Game Changer for Survivors appeared first on Recovery After Stroke.
Double Vision After Stroke: What Jorden’s Story Teaches Us About Brainstem Stroke RecoveryDouble vision after stroke is one of those symptoms no one imagines they’ll ever face—until the day they wake up and the world has split in two. For many stroke survivors, it’s confusing, frightening, and completely disorienting. And when it happens as part of a brainstem stroke, like it did for 45-year-old attorney Jorden Ryan, it can mark the beginning of a long and unpredictable recovery journey.
In this article, we walk through Jorden’s powerful story, how double vision after stroke showed up in his life, and what other survivors can learn from the way he navigated setback after setback. If you’re living with vision changes or recovering from a brainstem stroke, this piece is for you.
The Morning Everything Changed
Jorden went to bed preparing for a big day at work. By morning, nothing made sense. When he opened his eyes, the room looked doubled—two phones, two walls, two versions of everything. He felt drunk, dizzy, and disconnected from his own body.
Double vision after stroke often appears suddenly, without warning. In Jorden’s case, it was the first sign that a clot had formed near an aneurysm in his brainstem.
As he tried to read his phone, he realised he couldn’t. As he tried to stand, he collapsed. And as nausea took over, his vision became just one of many things slipping away.
He didn’t know it then, but this was the beginning of a brainstem stroke recovery journey that would test every part of who he was.
When the Body Quits and the World Keeps MovingEven when paramedics arrived, the situation remained confusing.
“You’re too young for a stroke,” they told him.
But the double vision, vomiting, and collapsing legs said otherwise.
By the time he reached the hospital, he was drifting in and out of consciousness. Inside the MRI, everything changed again—his left side stopped working completely. He couldn’t move. He couldn’t speak. He couldn’t swallow. His ability to control anything was gone.
For many survivors, this is where the fear sets in—not only the fear of dying, but the fear of living this way forever.
Understanding Double Vision After Stroke
Double vision happens when the eyes no longer work together. After a stroke—especially a brainstem stroke—the nerves that control eye alignment can be affected.
Survivors often describe it the way Jorden did:
- blurry, overlapping images
- difficulty reading
- nausea when focusing
- a sense of being “detached” from reality
- exhaustion from trying to make sense of their surroundings
In Jorden’s case, double vision wasn’t the only issue, but it shaped everything that came after. It influenced his balance, his confidence, and even whether he felt safe leaving his home.
Three Weeks Missing: The Silent Part of RecoveryJorden spent nearly three weeks in a coma-like state. Days blurred together. Friends visited. Family gathered. He remembers fragments, but not the whole chapter.
When he finally became more aware, nothing worked the way it used to—not his speech, not his swallow, not his limbs, and certainly not his vision.
This is something many survivors aren’t prepared for:
Stroke recovery often begins long before you’re fully conscious.
Starting Over: The Fight to Stand AgainInpatient rehab became Jorden’s new world. It was full of firsts, none of them easy.
The first time he tried to sit up.
The first time he attempted to transfer out of bed.
The first swallow test.
The first attempt to speak.
Everything required more energy than he had.
And yet, small wins mattered:
“When my affected hand moved for the first time, I felt human again.”
Double vision made everything more complicated, especially balance and spatial awareness. Even brushing his teeth triggered trauma because of early choking experiences in hospital.
Still, he kept going.
Life Doesn’t Pause for Stroke RecoveryJust like so many survivors say, the world didn’t stop for Jorden to recover.
On the very day he left inpatient rehab, his close friend—who had also lived with paralysis—died by suicide. Not long after, his dog passed away too.
It felt unfair. Cruel. Like everything was happening at once.
But even in that darkness, Jorden found a way to keep moving.
Not fast. Not perfectly.
Just forward.
Learning to Walk Again With Vision Working Against HimDouble vision after stroke made walking terrifying. Every step felt unpredictable. Every movement demanded complete attention.
He used a slackline as a walking rail. He held onto countertops, walls, chairs—anything that would keep him upright. He practised daily, even when the exhaustion was overwhelming.
This is something survivors often underestimate:
Vision problems drain energy faster than physical limitations.
Your brain is constantly trying to make sense of visual chaos. Of course you get tired faster. Of course progress feels slow.
But slow progress is still progress.
Humour as a Survival ToolMany survivors rely on humour to keep themselves grounded.
For Jorden, it showed up in moments like these:
His leg falling off the footrest of a wheelchair and being dragged without him realising.
Gym sessions where he pushed through fatigue—even after peeing his pants slightly.
Laughing at situations that would’ve once embarrassed him.
Humour didn’t erase the trauma, but it gave him permission to keep going.
“Now it’s me versus me. Every step I take is a win, even if no one sees it.”
What Jorden Wants Every Survivor to Know Recovery doesn’t end after 12 months. * Double vision after stroke can* improve—even years later. * Brainstem stroke recovery isn’t linear. * You’re allowed to grieve what you lost and still fight for what’s ahead. * The simplest achievements matter. * Hope is not naïve—it’s a strategy.
His story is proof that even when everything falls apart, life can still move forward.
If You’re Living With Double Vision After StrokeYou are not alone.
Your progress might feel invisible.
Your days might feel slow and frustrating.
But your brain is still rewiring, still adapting, still learning.
And you don’t have to navigate that alone either.
Take the Next Step in Your RecoveryIf you want guidance, support, and practical tools for rebuilding life after stroke, you’re invited to explore the resources below:
???? Read Bill’s Book: The Unexpected Way That a Stroke Became the Best Thing That Happened
???? Join the Patreon:
Recovery After Stroke
This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
Jorden Ryan: Living With Double Vision After Stroke & Finding a Way ForwardHe woke up seeing double, and everything changed. Jorden’s journey through double vision after stroke shows how recovery can begin in the darkest moments.
Jorden’s Facebook
Highlights:
00:00 Introduction to Double Vision After Stroke
03:15 The Day Everything Changed
10:26 When the Diagnosis Finally Made Sense
16:32 Surviving a Second Stroke
21:47 What Recovery Really Feels Like
32:16 The Emotional Toll No One Talks About
44:57 The First Swim After Stroke
54:08 Finding Light in the Darkest Moments
59:28 Living with PTSD After Stroke
01:15:01 Being Told “You’ll Never…” by Doctors
01:26:40 Finding Meaning After Stroke
Transcript:
Introduction to Jorden Ryan’s Double Vision After StrokeBill Gasiamis (00:01)
Welcome again to the Recovery After Stroke podcast. I’m Bill Gasiamis. And if you’re listening right now, chances are stroke recovery feels confusing and isolating. I get that. I’ve been there. Leaving the hospital, feeling lost, desperate for clarity and unsure of what comes next. That’s why this podcast exists. Recovery After Stroke gives you real stories and expert insights that help guide your recovery so you can feel more confident, informed.
and in control of your progress. And so you never have to feel alone or uncertain again. Today you’ll hear from Jordan Ryan, a 45 year old attorney who woke up one morning and nothing worked anymore. His story is raw, honest, and filled with moments that every stroke survivor will recognize. Fear, frustration, identity loss, and the courage to begin again. But I won’t spoil the episode. I’ll let you hear it from him. Jordan Ryan, welcome to the podcast.
Jorden Ryan (00:58)
Thank you, Bill. Happy to be here.
Bill Gasiamis (01:01)
Great to have you here. So if I recall correctly, your stroke was in March, 2024. So not that long ago. What was life like before that?
Jorden Ryan (01:10)
Life, I would say, was pretty normal. I didn’t have any symptoms or anything and I was a attorney. I walked to work every day about two miles and everything was going well. So right up until the night that I went to sleep, I had no symptoms at all.
Bill Gasiamis (01:26)
What kind of person were you then? Your routine, for example, and your relationships, where were they at? What kind of life did you lead?
Jorden Ryan (01:34)
I was awesome, right? No, just kidding. Yeah, they were good. Like I had a lot of friends and work colleagues and they did a lot. Like I was mostly a social person and went out a lot. So not home that much. I mean, I made a lot of friends in my loft, like down the halls were a lot of friends, but I lived by myself.
Bill Gasiamis (01:55)
⁓ Well, if you thought you were awesome, I’m going to go with that. I got no problem with you thinking you are awesome. What about your health? Did you have a sense of your health? You know, we often talk about how we felt and what we were like and how energetic we were. Did you have a sense of where your health was at now in hindsight?
Jorden Ryan (02:17)
No, I did not. Actually, ⁓ I had a deviated septum from somebody hitting me in the face a while back from me trying to stop a fight. And so it took three surgeries to finally get it correct. Like they had to take a piece of my rib and some of my ear to straighten out my nose. But anyways, I say all that because it made me gain a lot of weight and I guess have sleep apnea. I didn’t know that, but you know, the girl I was dating at the time told me. So anyways, I got it fixed.
And I had just seen a person to help me lose weight, the doctor and everybody. so I thought my health was good. And I had probably maybe a year and a half ago, I got into a jet ski, just knocked on conscious when I hit the water. So they did a cat scan and I didn’t know, but I thought that when they did that, I was fine. I was healthy. I didn’t know it would take an MRI to know that stuff. So I felt.
totally fine until the event.
The Day Everything Changed
Bill Gasiamis (03:17)
So after the nose surgery, things started to improve with regards to your weight and your sleeping. Yeah.
Jorden Ryan (03:22)
I don’t know that, like, I tried to get a CPAP machine before my surgery and yes, I was starting to work out more but I was still a little bit tired I guess but I mean nothing like, un-normal like, really bad or anything like that.
Bill Gasiamis (03:38)
Yeah, I do hear that sleep apnea is kind of that strange kind of a thing that people don’t realize they have until somebody diagnoses it and says to them, this is why you feel so drained, so tired all the time. And then they get it resolved in one way or another and things improve, especially with a, sometimes with a CPAP machine. So, ⁓ but then you’ll fit an active and you were pretty well. So take us back to that moment of that first stroke or what?
What was it like? What happened?
Jorden Ryan (04:08)
So when I had ZPAP like to get a diagnosis or whatever they sent something in the mail and you just put it on your finger it was not as comprehensive as an actual sleep study and they said well that will be fine anyway so I got the machine it was very hard for me to sleep with so it would keep me up it did the exact opposite of what it was supposed to do so anyways that night I went to bed I had a big day the next day work call international call
and I was gonna be the only one on the call, only attorney on the call. And so I woke up, I could not sleep, which was kind of normal with the CPAP machine. So I watched a movie and then went to sleep maybe an hour before it was time to wake up. And I went to bed and my alarm went off and I got up and I felt like really strange. I saw double, basically like I felt like I’d been drinking all night or something. Then, ⁓
I called into work and said, I’m sorry I cannot help you. Like, I was looking at my cell phone, which I do all the time, and I couldn’t read it or anything like that. being, you know, kind of naive, I think I took a quick shower, like, rinse some cold water on me, thinking maybe that would fix it. No, that’s ridiculous, but I thought it would, and when it got worse, that’s when I called on my one.
Bill Gasiamis (05:35)
Yeah, how long did they take to arrive? Do you feel
Jorden Ryan (05:38)
Mmm, I felt like forever, but I think it was pretty short. I lived in the city So the ambulance was right down the street. So I think like maybe 15 minutes or something like that
Bill Gasiamis (05:49)
Were you able to let them in?
Jorden Ryan (05:52)
I was, I, you know, the dispatch 911 person said to make sure I unlocked the door first. I thought I was having a stroke, but I fell down on my knees and laid against my bed and it was very difficult to go open the door to let them in. So yes, I was able to unlock the door and I did that. And I just started throwing up like more than I’ve ever vomited before in my life. Like something was really wrong.
my leg went out. I didn’t know that it like couldn’t move at all. I just fell backwards and it was kidney due to throwing up. So then they came and I was still able to stand and talk and I felt, I mean, other than throwing up and double vision, I felt fine. So they told me that I was probably too young to have a stroke and that maybe it was just ready to go. So I was thinking that, okay, well I’ll just go to the hospital and
you know, get checked out and I’ll come home early. But it seemed to get worse as things were going. I pulled myself up onto the gurney the EMTs had and I remember thinking like I’ve got to go to the hospital now and they were like being nice and getting my stuff and my phone and whatever else and if I threw up they were getting the trash can and I remember thinking I didn’t care if all of my stuff was stolen. I need to go to the hospital now.
So we definitely got up there. When I was kind of in and out of consciousness by that time and I got to the hospital and they checked me out like an actual MRI. And when I was inside of it is when my left side of my body completely quit working. So I didn’t know what was going on. I mean, I had no clue. So I pulled myself out of the MRI.
And some people get claustrophobic or whatever, but this was a square machine and because I felt sick already and half my body quit working while I was in there, it really put fear in me to get out.
Bill Gasiamis (07:59)
⁓ So you had the right to the hospital, they saw you rather rapidly before they got you into the MRI?
Jorden Ryan (08:10)
The EMTs did see me pretty quick. They did not think I had a stroke, so it wasn’t as maybe punctual as possible. they were still… I mean, the fire department, I think, was maybe a quarter of a mile from my house. So they got there pretty fast.
Bill Gasiamis (08:27)
Yeah,
okay. So when you got to hospital, what was that like? What happened then?
Jorden Ryan (08:33)
Yeah, by the time I got to the hospital, I was barely able to be coherent at all. Like someone would say, hey, Jordan, I would bring me to for a second, like, what is your phone number? And I could answer, but then I would be out again. when they were taking me to the MRI, they kind of with me. And this was the first time that I was frightened for my life. I think that one of the nurses was like, I can’t believe they’re going to waste the time to do MRI on this person.
He’s gonna die anyway. There are people that need them. Machine.
Bill Gasiamis (09:04)
Wow,
they didn’t say that, did they?
Jorden Ryan (09:07)
Well, I was like, couldn’t talk, couldn’t move. I don’t know if they said it for real, but I think so. I believe that’s what they said. then I was like, this is not how I die. I’ve done so much crazy stuff. can’t be just cause I was going to work early in the morning. ⁓
Bill Gasiamis (09:22)
Wow.
So you have a sense that that’s what they said while you’re being, while you’re on the bed being moved to the MRI.
Jorden Ryan (09:32)
Well, I was in going to like a holding area, like a waiting area to do MRI. Yeah. And so they left me and I couldn’t move. And so it was pretty scary. Yeah. And then after the MRI, the nurse did say, you know, we need to call your family. And so I did unlock my iPhone and I remember her calling, but it’s kind of hazy in and out of that. And I think
They said, need to call the family so they can say their goodbyes. I think I overheard that. And I was like, what is going on? This can’t be this serious, right? So I really do believe I did hear that though.
Bill Gasiamis (10:12)
Seems like they may have very quickly upgraded your condition from vertigo, which they originally said when they arrived and seems like they kind of knew that something else dramatic was happening.
Jorden Ryan (10:19)
Yeah
When the Diagnosis Finally Made SenseThat’s correct. I wish it would have been just ready to go. Right. But it was all of a sudden went from, you know, pretty good news or decent, extremely dire consequences or like something bad was going to happen. Yes.
Bill Gasiamis (10:42)
Yeah. How old were you in 2024?
Jorden Ryan (10:46)
I was 45.
Bill Gasiamis (10:49)
Yeah. And do you have a sense now? Do you understand what it was that caused the stroke? We’ll jump back into Jordan’s story in just a moment. But first, I wanted to pause and acknowledge something. If you’re listening to this and stroke recovery feels confusing and isolating, I want you to know you’re not imagining it. I know exactly what that feels like. That’s why I created Recovery After Stroke to bring you real stories and insights that guide
your recovery and help you feel more confident, informed and in control. And if you’d like to go deeper, remember to check out my book, The Unexpected Way The Stroke Became, The Best Thing That Happened, and support the show on Patreon at patreon.com slash recovery after stroke.
Jorden Ryan (11:34)
Yes, I do have ⁓ an aneurysm in my, ⁓ in the brainstem. can’t, it affected the pontine area and the salabella. Like I cannot remember the nerves. Unfortunately, I’m sorry. The veins that it’s in, but it is really big and the blood being kind of, ⁓ kind of mixed around. mean, like because my vein is so wide, the clots can form just. Yeah.
Bill Gasiamis (12:03)
Okay, so with an aneurysm, you’re at risk of it bursting, but then because of the different shape, the high pressure and the low pressure systems that occur in the aneurysm create a different blood flow. It causes the blood to turn into a clot and then perhaps get stuck there. And then when it gets big enough, it can break off or move and then it causes the clot.
Jorden Ryan (12:31)
Yeah, I don’t know if it breaks off and or just makes a clot and get stuck in there, but same concept, I think. Right. And so, yeah.
Bill Gasiamis (12:40)
Okay, so then you know that now after they did the MRI, what happened then? Did you have to ⁓ go through some kind of a procedure to sort out the clot and to remove the blockage and to fix the aneurysm? What was the situation?
Jorden Ryan (12:59)
Yeah, unfortunately they cannot fix aneurysm. They are just throwing as much medicine as they can, like all the tools that they have at the disposal at this time. But after they found out I had a clot, they’re just kind of like, let’s see what happens now. So that is when I went kind of again unconscious in probably about three weeks. I do not remember very much at all.
Bill Gasiamis (13:26)
Okay. Was that because they were, were in an induced coma to help you with it, with the healing?
Jorden Ryan (13:32)
I don’t think it was induced. think it was just my body went into a coma. mean, at the time I thought probably I was just very tired because I’d only slept an hour, but I mean, three weeks is a long nap. So a lot of my friends come in to visit me in the hospital, but I was like, I felt like just tired, but I didn’t feel bad. Like I was going to die or something. But so it was very strange because I felt very coherent. Like every day is just a different day.
but my body like wouldn’t move like I could tell my left hand to move and it would not. So, but other than that, like, ⁓ I felt normal so to speak.
Bill Gasiamis (14:13)
I can see those three weeks. Did you have a sense that you had a stroke? Did that actually sort of say you’ve had a stroke? Did you understand that for the first time?
Jorden Ryan (14:25)
Yeah, I understood that I had a stroke, but I just didn’t understand what that meant. Like, for example, to sit up, which I would do in my whole life, I was not able to do that anymore. So during that three weeks, they would have a hoist system to move me to a couch. So I wouldn’t get bed sores, I think, you know, just precaution, but that was like a really scary, like I did not like that at all. was, which would normally be super easy. ⁓
Yes, they said I had a stroke, but I had no idea how bad it was.
Bill Gasiamis (14:58)
Yeah. family and friends. You had people rally around to do people have to fly. Excuse me. Do people have to fly in or come from out of town or were they all nearby? How, how did you go and see that?
Jorden Ryan (15:13)
I think that my sister put something on Facebook, on my Facebook. And so I had people close by and I did have people fly from a couple of different areas because at that time I think I was in ICU. So, you know, that may be the last chance I had to talk to me. So they did come say goodbye, but the hospital for so long, I mean, people got me flowers and I would think that would be as long as possible, but then those flowers would die.
and people would bring plants and when those died, I mean, wow, that’s really a long time to be in the hospital, you know? And the plants died because I couldn’t water them because I’m paralyzed, so, at that time.
Bill Gasiamis (15:54)
Yeah, how long were you in hospital in total?
Jorden Ryan (15:58)
The first stroke I was probably, I got out May 17th, but that’s out of the inside rehab that what do you call inpatient rehabs? think that I was in hospital for maybe three weeks, maybe a month. Like, you know, they downgraded me from ICU for a week and then sent me to the internal rehab.
Bill Gasiamis (16:23)
Yeah, so the stroke was March 22 and then you got out of hospital in May.
Jorden Ryan (16:29)
That’s great. In mid-May, yeah.
Surviving a Second StrokeBill Gasiamis (16:32)
Yeah. And you said that that was the first stroke. So was there another stroke?
Jorden Ryan (16:37)
Yeah, it’s crazy. So I had my first stroke and then I really tried hard like no sugar, no pop, no alcohol. I did everything I thought is best I could and even in rehab they had me bake cookies and I didn’t eat them because they had sugar in them. And then I had another stroke when I woke up to go to rehab. So that was October 7th. So it was, it started out with just my hand wouldn’t move like it should like
I was regaining everything back pretty well from the first stroke. And I thought I was Superman basically. I was healing pretty fast and I was like, I beat it. This is great. And then right back to being in a bad stroke and being a wheelchair and all of that.
Bill Gasiamis (17:25)
So the same issue in the cerebellum near the pons again caused another clot or was it just something else that happened?
Jorden Ryan (17:34)
No, you’re right. It was the same thing, basically affected the same areas of my brain. So they say that your brain with spasticity can do like a detour. So now I have a detour of a detour, basically. So my brain had just rewired and was working pretty decently and then that area got damaged as well.
Bill Gasiamis (17:57)
Okay. And were you on blood thinners or something to help thin the blood to kind of minimize the risk of another blood clot or?
Jorden Ryan (18:06)
Yes, I was on the Eloquist, so I thought that that would be enough, but it was not. So now I am also on aspirin, but it’s just a small pill every day. I think that, like I said, they don’t really have a whole lot they can do. So they’re just telling me to take this medicine out for the best and maybe it will happen again and maybe it won’t, but they can’t operate on it because the risks outweigh the reward. Like there is a
Good chance of death.
Bill Gasiamis (18:37)
Yeah, understood. How long did you spend in hospital for the second incident?
Jorden Ryan (18:42)
I was out, ⁓ towards the end of November. think mid and like either the second or third week in November.
Bill Gasiamis (18:52)
And then when you left hospital that time, you left with the deficits, which had kind of eased up or you didn’t really have before the, after the first one, is that right?
Jorden Ryan (19:04)
Yes, that’s right. I will, will wheeled out in wheelchair and had no use of my leg or my arm and my face was not really healed from the first stroke, but a little bit and I still had that too. I could not talk. I couldn’t eat. I couldn’t drink. Like, I mean, I could, guess, but not how, yeah. So like holding glass to my face would come all over down my face and stuff. so
This area right here always felt wet. Like it felt like I was in a pool, even though I wasn’t. So I couldn’t tell if I had food all over me or what have you that I would have to rely on people to tell me. I could chewing a salad is, I mean, it was really, really hard. That was kind of the, as I advanced, that was something I could do. My first stroke, I could not, you know, a steady is it.
I don’t know if you know what that is for using the restroom. It’s like a basically a dolly. put you on and I had a really hard time even trying to use that. I went through a lot of swallow tests. I could not swallow my own saliva. So that was very difficult for me. ⁓ They brushed my teeth and I felt like I was gonna die. I could not breathe. Like probably for that went on for like five minutes.
Like, I mean, I could breathe, sorta, but it was very difficult.
Bill Gasiamis (20:29)
They brushing your teeth for you and it, and it, and triggered some kind of a reaction or.
Jorden Ryan (20:34)
Like the yeah, the saliva that you have in your mouth that is I mean was enough for me to drown in basically I guess Yeah
Bill Gasiamis (20:45)
So it wasn’t the actual tooth brushing. It was the saliva that was being generated that you couldn’t.
Jorden Ryan (20:50)
I so. didn’t know for sure what it was, right? Like, but I’m pretty sure was alive. It was something I couldn’t manage. That’s for sure. And it just tasted like toothpaste probably because I just had done brushing my teeth. But they did give me a peg tube so I could get food and nutrition and water in me. However, the way that they installed it the first time was ⁓ caused ulcers in my…
I think in my colon, so I had to go back to the ICU.
Bill Gasiamis (21:24)
Yeah. Such a dramatic time, right? A lot of stuff going wrong. What’s going through your head at the time? Because you went, like we said, like it was a year earlier, everything was going fine. Everything was all okay. And now you’re dealing with all this stuff. How do you, you know, what are you saying to yourself? How do you feel about what’s happening to you?
What Recovery Really Feels Like
Jorden Ryan (21:47)
I wish that I could give you like a really good answer, but to be honest it was more like, why is this happening to me? I can’t believe this is happening. I’m too young. Like I have to take decent care of myself. I cannot believe this. I mean, when I was in the hospital, I was watching like my 600 pound life and like, I’m just saying that I was, I thought, you know, at least that healthy, but at that time I was really devastated by what was going on.
Bill Gasiamis (22:16)
Yeah, you would be, it makes complete sense, right? How do you go from being quote unquote normal? Everything’s just going along as it always has. And now all these hurdles that come your way that are really challenging to overcome. you probably don’t have the skillset to deal with them in such a dramatic short amount of time.
Jorden Ryan (22:17)
Yeah.
Yeah, I think that’s right. And I think probably if it would have just been on me, maybe I could have, but I was like, I’m going to be such a huge burden to my family in my way life is going to be so bad. Like, I was just like, how is this happening? You know, I don’t smoke and like, I don’t do heavy drugs or any of that stuff. So what is going on? And then they said, well, you must drink a lot of energy drinks. And I was like, no, I don’t drink any energy drinks. So they’re like, we don’t know what’s going on then. So just that was.
So for me, I really didn’t know what was going on.
Bill Gasiamis (23:15)
Yeah. And in hindsight, it was just random. It’s just one of those things with the aneurysm and how can you possibly, how can you possibly deal with it when you don’t know that it’s happening to you? Similar to me, like I had a brain hemorrhage three times because of a blood vessel that I was born with. I wasn’t having the best lifestyle, but I also wasn’t causing it. I also didn’t.
I wasn’t able to solve it. Everything was kind of handed over to other people. It’s not, it was nothing. It was not up to me. And I had to just kind of go through it.
Jorden Ryan (23:51)
Very similar. was, you know, couldn’t be in charge or control anything basically, like even really simple things. I mean, I had a diaper on, I couldn’t even go to the restroom by myself. So it was just very hard. It was a lot of stuff all at once, right? Like, it wasn’t just like I a cold or something. It was very difficult. And at first, when I was there, I couldn’t talk. So
people would come and visit me but and to me what’s very strange is that my voice sounded exactly the same before the stroke which it didn’t in real life I was probably like I have no idea what I sounded like but people couldn’t understand me so I would say something to them and they’re like sorry I can’t understand you but in my head I said it perfectly it sounded like me I can hear ⁓ like my slur now but I could not at first
Bill Gasiamis (24:47)
Yeah. Yeah. It was there somebody that you met who helped support you and guide you through those really sort of tough bits early on, like was there kind of a mentor or somebody that came out of nowhere and just helped you navigate this?
Jorden Ryan (25:06)
⁓ I don’t know really like who navigated like how it happened, you know, I had a chaplain that came in there maybe a doctor would help I Didn’t have my phone or anything at the time But when I was able to do that I saw your channels and stuff and so I listened to it and probably the totality of a lot of things there wasn’t like a one person or one thing that helped me really a lot so
I remember being kind of upset at you because you said it was the best thing that ever happened to you and that was it was too new for me. I was like, what do you mean? That’s not possible. And a nurse came and said, well, you have the beautiful blue eyes and that my eyes are green. So I was like, well, maybe my hair will grow back and I’ll have blue eyes. Maybe it’ll be the best thing that ever happened. But yeah, I mean, I wasn’t really mad at you. I just said the time I could not accept those that verbiage.
Bill Gasiamis (26:02)
that is perfectly understandable. And it’s exactly why I chose the title, not to piss people off or make people upset while they’re recovering. In fact, I never expected that people would find it so early on in their journey. I just thought it was a story I was gonna tell and it was gonna go out there. But of course, the very first time I spoke about my book a few years ago on YouTube, the very first comment was a negative comment along the lines of,
Similar to what you said. It was a bit more rude. It wasn’t so polite ⁓ And I and I was like, ⁓ no, no, no, you guys have got it wrong I don’t think I think you missed the boat. No, sorry. You missed the point the point being that It was really terrible when I was going through it for three years But when I came out the other side, there was a lot of personal growth. There was a lot of ⁓ Things that I had appreciated that I’d done that I’d learned that I’d overcome etc
that became the reason why I was able to say it was the best thing that happened to me because I started a podcast, I wrote a book, I’ve spoken publicly about it, I have this platform, I’ve created a community, all these things, right? So the things that I didn’t know that I was lacking in life before the stroke, I thought my life was complete, waking up in the morning, going to work, coming home to the family, cooking dinner, paying the bills.
paying the mortgage, the car lease. I thought it was all cool, all complete, but I was kind of unhappy. There was a lot that I was lacking in my life. And only because of the stroke journey, the end result of the podcast, the book and all that stuff, did I realize, ⁓ actually the…
Aftermath, the things that I have grown and discovered were the best things that happened to me. And it was because of the stroke. It’s such a weird and dumb thing to say. Like I can’t even wrap my head around it, that I had to go through something so dramatic to accomplish some amazing things. I wish I would have just done it before the dramatic events. I wish there didn’t have to be one. And that being said though, I’m 13 years.
post stroke, the first one, and I still live with the deficits. I still have problems sleeping on my left side because it’s numb and it’s burning and it tingles and all that kind of stuff. When I get tired, I still have balance issues when, ⁓ you know, sometimes my memory is a bit flaky because of it, but you know, a little bit, I still have deficits in my muscles and spasticity and all that kind of stuff and it hurts. I’ve accepted that part of it.
how it feels in my body, but I’ve also ⁓ gone after the growth. Like I’ve really, ⁓ seriously, dramatically gone after the post-traumatic growth that comes from a serious episode. And what I hope-
Jorden Ryan (29:10)
explaining that in other episodes. was just my friend that I had heard and I was still like too bitter to hear that. Right. And now I kind of make sense. Like there are a of things that I didn’t appreciate as much as I should have. All the cliches, know, kind of true. Like I wake up and like that is a good day then because most of my stroke, both of my strokes came from when I was sleeping when I woke up. So kind of like
Bill Gasiamis (29:21)
Yeah.
Jorden Ryan (29:38)
Even being in the hospital, I saw more sunsets than I did in my regular life or post stroke, whatever you want to call it. I definitely get it and I can appreciate what you’re saying now, but after that time, was just more difficult.
Bill Gasiamis (29:45)
Yeah.
I definitely come across people regularly, even though ⁓ I’ve been speaking about it for a little while, who come across the first podcast episode that I’ve done, that they’ve found in the 370 odd. And then they hear me say that again. And then there’s also, there’s sometimes a repeat of that incident where I know exactly where they’re at. Like I know exactly what’s happening. I know they don’t know that. And then what I hope that happens is say in three or four years,
they can, when they go, there was that crazy guy who said stroke was the best thing that I wonder what that was about. I’m going to go get that book now and I’m going to read it. And I’m going to see if I can, you know, shift my mindset from perhaps something that’s been bugging me to something that we can grow from. And the book has got 10 steps to recovery and personal transformation. It not 10 steps to getting your perfect walk again, or making your hand work perfect again, or
you know, getting rid of your deficits. It’s not that kind of book. It’s an inspiring book. We’re trying to give people some tools that they can use that doesn’t cost them any extra that will improve the quality of their health and their life. And it doesn’t matter how injured you are because of a stroke. That’s what the book helps people to do. I love challenging people. I’m not, of course, you know, I’m not intending to make people think that I promote.
stroke is something that they must experience as ⁓ you know.
Jorden Ryan (31:23)
the ⁓
Bill Gasiamis (31:26)
Yeah. ⁓
It’s not on audible. I am going to remedy that at some stage. I’m going to remedy that and I’m going to get people the ability to listen to it because ⁓
Jorden Ryan (31:46)
Well, I will be your first customer, hopefully.
Bill Gasiamis (31:49)
Yeah, a he-man.
Jorden Ryan (31:51)
cannot read because my eyes are cro- like not crossed but I have double vision so they are off I cannot read so but yeah
Bill Gasiamis (32:01)
⁓
After your three weeks in ICU the first time, I think you began inpatient rehab. What were those days like going through that first few motions of trying to get yourself up and about?
The Emotional Toll No One Talks AboutJorden Ryan (32:16)
Yeah, it was very emotional, right? because you want right away, I thought just to get back to where I was. And I mean, I read some other things and I had friends of friends send me stuff and that chapter of my life is over. I mean, it was a good one, but it’s time to rewrite another one, right? Like I have to move forward. So the whole journey was really difficult. Probably took me longer than most people, but, ⁓
I was very lucky in the fact that I had a friend that had told me like, hey, you have done hard things before you were, you know, in Muay Thai, you were a attorney, you can do it again. And then in my mind, I was like, you’re not a brain doctor. What are you talking about? Leave me alone. So even though the expression was being really nice internally, that’s what I was thinking. Then I saw something like, um, it was, you know, I think it was a PT, a physical therapist who said,
think that you’re gonna heal yourself in three hours a week or a day or whatever, that’s not it. Then I had another friend who told me that his sister had a stroke and she wished she would have done more during recovery. So I eventually got to the point thinking like, well, all these doctors are saying it depends, which is a fair answer, right? And I tell clients that and they hate it. But I thought that’s better than absolute no.
They’re not saying and so they’ve made it to me like, well, maybe I won’t get better, but it’s not going to be from me not trying. I think another one of the people on your episodes ⁓ saying like they were always very positive and I was like, that’s not me. That’s I’m not 100 % going to be better. That just wasn’t my attitude during it. I mean, it’s good. wish I would have been, but unfortunately I wasn’t. But it kind of.
Over time it’s gotten better, but at first it was very difficult for me.
Bill Gasiamis (34:17)
Yeah, that’s completely understandable. ⁓ You had, did you have some small wins in rehab that kind of made you shift a little bit slowly and kind of realize you’re making ground or things are, you’re overcoming things.
Jorden Ryan (34:35)
Yes, I did. I was very lucky in the fact that, I mean, I would just notice my therapist face like when my affected arm started to work or I did something, they didn’t say like, that’s unbelievable. But it was kind of like I was making progress faster than a lot of people. And I’m not saying I’m better. I was very lucky and I would never come to other people, but they were like, wow, that’s really amazing that you’re able to do that. So it was, it felt good.
Being able, like, even just to move my finger, like, in my defective hand for the first time was huge, and then I was able to use my thumb to… I feel human again. I mean, to be honest with you, when I couldn’t talk and I couldn’t move and everything, it just felt weird, like it wasn’t me.
Bill Gasiamis (35:22)
Yeah, absolutely. So were there some setbacks during that time as well?
Jorden Ryan (35:27)
There
were some setbacks. I, again, I watched one of your episodes and a gentleman told me, like I said, he had the fatigue set in later on in his journey. And so one of the things I was like, well, I’m so lucky that I don’t have that because I go to the gym pretty often. And that would be devastating to have fatigue. And then I also had fatigue. I mean, to the point where I didn’t want to move around at all. didn’t want to
get out of bed hardly so there’s setbacks in the fact that like my my sister and brother-in-law luckily took me in I mean they were like ⁓ angels so to speak but they live in a big one bedroom app like one one floor house I meant to like a ranch style and just going to the bathroom was a setback because it would take forever to walk down the hall or whatever I mean it was my gate it was a walking style was
Pretty hilarious there, you saw me.
Bill Gasiamis (36:27)
And then fatigue doing that walk also then ties you out.
Jorden Ryan (36:34)
Yeah, just walking to the bathroom did tire me out. So, like, to brush my teeth, I’m already scared of, like, not feeling well. Plus, walking all the way there and brushing my teeth and walking all the way back, it would be… I would really have to get my strength together to do that.
Bill Gasiamis (36:53)
A journey, a proper journey.
Jorden Ryan (36:55)
I had to do it because I didn’t want to wet myself or soil myself, but it was very difficult. mean, looking back, it’s like, wow, that stuff was so easy now. But at that time, it was not easy. was very difficult.
Bill Gasiamis (37:11)
Yeah. I remember being in a similar situation and I don’t have that far to go to the toilet from my couch where the lounge room is and the TV is. But I remember going to the toilet and getting back to the couch and then being completely wiped out. that’s it. I was done for hours, done for hours, just sitting there resting and then hoping to get enough energy to get back up off the couch and be okay. Um, that was very early on. That was probably
a few, maybe about four five months after the second bleed, it was still very dramatic. And I couldn’t really appreciate how ⁓ I took for granted that trip before that. Like it was just, it never crosses your mind.
Jorden Ryan (37:55)
You wouldn’t even think about it, right? Like getting out of a car to walk to the house was very difficult for me. Or when I came back, I would just fall on my bed because I was worn out. But before that, before my stroke, I would not ever think about that kind of stuff. Yeah. In a wheelchair at first, but I walked around the house with a walker and like two laps inside the house would wear me out. That’s maybe one.
Bill Gasiamis (38:11)
Yeah, hell no.
Jorden Ryan (38:24)
Like, one hundredth of a mile is not much, or not even close to a kilometer, and that would wipe me out completely.
Bill Gasiamis (38:32)
Yeah. You find yourself thinking about the steps that you’re taking. Are you putting a lot of brain energy into the actual task? How your leg is moving? What was the process like for you?
Jorden Ryan (38:44)
Yes, my- so all the things that your body does without you thinking about were affected in me. Like blinking, I have to think about it. To move my arms at the same time, I have to think about it. So to walk was- I had to really be like, okay, which foot goes first? Left foot.
Okay, now what foot goes next, right? It sounds ridiculous, but that’s really what I was like. My mind was, I had to think every time like learning to walk. I was like, what hand goes in front? with what foot? Like it was, I mean, very, very basic, like to the beginning, right? Like before elementary school, like it was, so everything I did was taxing mentally because I just had to think about stuff that you don’t normally think about, right? Like
Okay, I should breathe. It wasn’t quite as bad as that, but that’s pretty close.
Bill Gasiamis (39:37)
Wow, So in the notes that we shared between us, you mentioned something about the first time you were taken out of hospital ⁓ to go and eat, I think. Tell me a little bit about that story. What happened then?
Jorden Ryan (39:53)
Sure, so I noticed, to start a little bit further back, I lost my hearing. It wasn’t when I first had my stroke, but when I was in rehab, they were actually changing my diaper. And so I would lay on each side and I noticed when I laid on the side, I could not hear them. They were telling me to roll over or something. And so I had lost my hearing completely. Then, um…
When I got out of the hospital, my friends and family and whatever got together and took me out to eat and the noises were so loud that my senses were too heightened. It was confusing to me. I had a lifetime of going out to eat with friends and going to drinking or whatever. This was just a lunch and I couldn’t really handle it. It was almost too much for me. The car ride from
maybe a three hour car ride, had to close my eyes because I would feel sick if they were open. it was, I realized just how different my life is gonna be, right?
Bill Gasiamis (40:59)
Yeah, did that make you want to avoid those types of events?
Jorden Ryan (41:02)
Yes,
I have to push myself to do that kind of stuff because I don’t know, I think it’s easy to become depressed, right? Like, it’s easy to just be like, I will just sit here on the couch, watch TV. I don’t really watch TV, but… And even that is hard with my eyes doubled, but I mean, like, I push myself to hang out with friends or go to eat or something. But it’s very difficult. I would rather just stay home. If you just ask me, like…
I mean, I’m always excited to go out with people, that’s not what I mean, but it just is easier to stay home.
Bill Gasiamis (41:37)
Yeah, I understand that easier to stay home. It’s a trap as well, isn’t it? It’s a, if I stay home, I don’t have to deal with all those difficulties, all those challenges. I don’t have to overcome anything. I can just have the easy way out. But then that you pay a price for that as well. That’s not, it doesn’t work like that. You have to pay the price of, well, then you don’t go out and then you’re alone again. And then you’re in your thoughts again. Then you don’t interact with people again. And
It’s not the easy way out. seems that way, it’s potentially leading you down a path that you don’t want to go down.
Jorden Ryan (42:11)
You’re exactly right. I tell people that because I’m so lazy, I try so hard now because I don’t want to have that life like that forever, you know? So I try very hard now so I can be lazy if that makes sense.
Bill Gasiamis (42:26)
That makes complete sense. love it because it’s kind of like you’re lazy.
Jorden Ryan (42:31)
Right, exactly right. You know, because going to the bathroom, if that’s hard forever, that’s gonna be terrible. I gotta get up and walk and have to go out with people. then life is not as hard, hopefully, because you’re doing the things, right? So.
Bill Gasiamis (42:47)
Yeah, yeah, and you’re getting all the genuine awesome things that come from interacting with people, going out, being ⁓ in public. ⁓ I know what you’re saying about the kind of the earning our lazy kind of thing, right? Because I would say to myself, ⁓ Saturday, I’m gonna go hard. Now, hard for me might’ve been just to literally go to an event and stay an hour longer than I normally would have stayed, whether it was a family event, a party or whatever.
And then I’m gonna be really exhausted tomorrow. I know that tomorrow I’m gonna be really, and I’ve got nothing booked in. I’m gonna do absolutely nothing for the entire day so that I can go out and go hard tonight, whatever tonight looked like, whatever that was gonna be like. And that was where I earned my recovery, my lazy. I’m sitting on the couch and I’m watching TV or I’m reading a book or I’m not doing anything.
That’s exactly how I kind of used to talk to myself about doing nothing on the following day.
Jorden Ryan (43:54)
That is a good way to put it, earn your laziness. Like that is exactly what I did. I did something hard or out of my comfort zone and then when I was lazy I felt better about it. If I just wanted to stay home and watch TV, I mean I would have won the lottery basically, you know, like that would be my life. But because that is not what I want to do, doing hard things and then being lazy is a good way to look at it. It would make me feel better about myself.
people and everything just kinda makes it harder to be depressed.
Bill Gasiamis (44:32)
Yeah, agreed, 100%. I would encourage people to get out as much as they can. ⁓ Now, I’m very interested in your thoughts about this. Your first swim, I wanna know what that was like, cause I had a first swim as well. I remember my first swim after waking up from surgery, not being able to use my left side and needing to rehabilitate it. ⁓ What was it like for you to experience that?
The First Swim After StrokeJorden Ryan (44:57)
Yeah, so I’ve been swimming before I can remember when I was a kid. So like being by a pool was very scary for me because I thought if I fell in, I could not like get out. And I got in the pool with a life jacket to try to walk and doing I don’t know what this stroke is called where move both arms like that. But only one would work at a time. But I’ve been doing it forever. So it was so strange to be in the pool and not both my arms work together.
It was almost like I didn’t expect that that late in my recovery It was not that long but still it was strange to me probably maybe a month after I got out of the hospital so luckily my mom took me to the pool quite a bit and Pushed a wheelchair even though it’s really heavy and she is older so
Bill Gasiamis (45:50)
Yeah, I went to the pool for the first time during rehab. They asked me if I had anything particular I wanted to work with or a particular exercise I wanted to do. And for me going into the pool, I felt safe that I couldn’t fall over. So we kind of did aqua aerobics and my left side wasn’t working well, but in the pool you couldn’t tell that it wasn’t working well. then put on a, it just felt normal. It felt normal. It kind of. ⁓
appeared like it was working normally, but it felt strange because the water pressure on my affected side, that was different. Feeling the water pressure on my affected side for the first time was really strange. What was cool about it is they gave me a life vest, so there was no chance of falling over, drowning, dying, or anything like that in the water. And it was really a real relief because my body felt really free for the first time. And then as I got better and we started to get out and about,
One particular summer we went to a ⁓ waterfall here near where I live. And in the pond at the bottom of the waterfall went for a swing. But the difference is ⁓ fresh water ⁓ is different from salt water. And I had never swum in ⁓ fresh water.
Jorden Ryan (47:11)
Yeah, there’s a big difference here, right?
Bill Gasiamis (47:14)
Wow, you’re heavier, you sink quicker. And I went for this very short distance swim and I was completely out of breath and fatigued like really rapidly and needed somebody that was with us to help me get out because I hadn’t realized how much more taxing it would be to do the swimming motions or do all those things and stay afloat. ⁓ And it was really scary because it was the first time I learned that.
Jorden Ryan (47:17)
Yeah.
Bill Gasiamis (47:42)
I am not as capable as I used to be ⁓ in the water.
Jorden Ryan (47:47)
Yeah, I think that brings up a good point for me is that people that try to help me tell me like, be careful. There’s a table there or something like very obvious, right? But they don’t know what I’ve been through and what I can see what I can’t. have to be ⁓ appreciative of them saying that stuff instead of annoyed. Like I usually am so yeah.
I did a triathlon in the ocean and it was so much easier. I was pretty happy. I was the other way around. I’m used to swimming in fresh water and then in salmon and salt water and that was all post stroke. But I can know what you mean. There’s a huge difference.
Bill Gasiamis (48:27)
What’s your
Yeah, you’ve done a triathlon post stroke.
Jorden Ryan (48:33)
No, I’m so sorry. I meant before stroke. ⁓ Yeah, I did one back when I was healthier, but it is hard for me to even raise my arm. I can kind of do it now, but so I just did water aerobics actually today. And I mean, I am the youngest person there probably by seems like 30 years, but in the worst one there, like you can definitely tell I have a stroke. Yeah.
Bill Gasiamis (48:59)
Yeah, yeah, yeah, yeah.
What’s cool about, what’s cool is that now there’s competitions where people can go and compete ⁓ after they’ve been, like the Paralympics is a classic example, right? And all the events leading up to the Paralympics where people can go and compete, get physical, even though they have deficits. That wasn’t something that was possible decades and decades ago. It’s a fairly new thing. I love that even though people are injured and
they’ve had difficult times, perhaps their limbs aren’t working correctly. Some people still decide, I know I’m gonna be a competitor still, I’m gonna be with one arm, with one leg, with whatever my, whatever I have left, I’m gonna do the most I can and compete as much as I can to be the best in my particular sport. I love that about the things that people can access today about participation in sport, even though they’re
injured.
Jorden Ryan (50:02)
Yeah, for me, it is much different. Like I used to be a very competitive person and now it’s me against me, right? The me against the stroke or whatever. Like I don’t care that somebody can run really fast. Like, I mean, that’s good for them, but for me getting outside and even getting to the event was difficult. Now to, you know, sit in a tricycle or whatever it happens to be is just, it’s more like a golf or something like that where it’s just you against you, you know, so.
It is good that they have that kind of stuff, I think. Like, I’m looking at bikes for mountain biking with three wheels and stuff, so.
Bill Gasiamis (50:39)
Yeah, I love what you just said you against you. It’s like you against your mindset.
Jorden Ryan (50:45)
I think it’s just… I don’t want to say me against the world but everything is so… ⁓ difficult I guess? Like everything is a win so if I get in a car to go to the event if I get a bike that I can ride even a tricycle like that’s win if I can finish the event well that’s a win before it was like what place that I get now that’s not important to me I mean sure I guess is this not
as important as it was before.
Bill Gasiamis (51:15)
Yeah, your priorities have shifted.
Jorden Ryan (51:18)
Yeah, very much so. Like, I think that I have a lot more empathy for people that are disabled. It just clearly opened my eyes. And even though I work in the law, I am used to disability act or whatever. And I was like, these people, now I totally get it. You know, so I understand like why they should have these laws in place. So here in the States, I mean,
Bill Gasiamis (51:44)
Yeah.
Yeah, same with us in Australia. mean, there’s lots of laws to try and protect people who have a disability of some kind, injury, whatever you want to call it, so that there’s less discrimination, so that there’s more services, so there’s more access. ⁓ It’s one of the best conversations that people have because they kind of say, well, we know that this particular service that is going to be provided
is going to be provided for all the population and 93 % of the population, for example, it’s not a real number, will be able to access it beautifully. What about the other 7 % who are not gonna be able to access it? We need to think about them. We need to think about how they’re going to go about ⁓ traveling on this service or accessing this service or getting in and out of this particular office or building and all that stuff.
is taken into consideration in the design and planning phase now. So you can move around Melbourne, my hometown, in a electric wheelchair or a regular push wheelchair. And you will not have to worry about getting on a train, getting on the public transport, a bus, the tram, ⁓ going down a curb, all the curbs are ⁓ angled down. So this beautiful, nice smooth path towards the road and then up again.
Jorden Ryan (53:13)
Yeah, that sounds very nice. I think I was just ignorant to people’s needs, I guess. And now I learned firsthand how important they are, right? So I was just like, man, that’s a lot of money to do that. But it makes sense if someone says, well, we have 99 bathrooms, but you can’t use any of them. It doesn’t do me much good, right? So to have this kind of, yeah, right.
Bill Gasiamis (53:22)
Yeah.
Yeah, what’s the point?
Finding Light in the Darkest Moments⁓ Now, the thing about stroke is that unfortunately life doesn’t get put on hold for us to recover from it and then let us get back into life as if we were okay. And I remember going through the third bleed and then a couple of weeks later, literally two weeks later, I think, maybe about a week later, my mother-in-law passed away. And then we had to have her funeral before my brain surgery.
and my wife had to deal with all of that, right? You also, you lost one of your friends soon after you got out of, I think it was at rehab.
Jorden Ryan (54:19)
It was the day I got out of, ⁓ like inside the hospital rehab, inpatient rehab, like he was a good friend and he also had, I think a something to do with he had a tumor on his spine or something that was removed, but it left him slightly paralyzed. Like he was, he had both arms and I remember being in the hospital being jealous of him because
Such a little thing like, wow, this guy can go to the bathroom by himself. I wish I could do that, right? But unfortunately, yeah, he died by suicide the day that I got out. It was devastating and very hard. I mean, that was somebody I planned on spending a lot of time with because he lived in the same city that my sister took me in that I was going to hang out with. I mean, not just about me. It was just sad that that happened, obviously.
Bill Gasiamis (55:14)
Yeah, of course, man, that’s pretty sad. And also, then your dog passed away.
Jorden Ryan (55:22)
Yeah, so this guy, he had told me my last message with him, well almost last was, we didn’t ask for this, but we’re gonna get through it together. And then, you know, he took his life, so that made me seem like, what should I do now? Then my dog died, which was a big deal to me because, okay, now I have all this time to pet him or play or whatever, and you know, it was pretty dramatic.
dick dab that, but I felt like I was in a country song.
Bill Gasiamis (55:55)
How did you get past it?
Jorden Ryan (55:56)
I don’t know, think that you you kind of learn to just roll with the punches as I say because there’s so much in life that I can’t control that I mean, just, stuff happens right? You just have to do your best and I try to tell people like, it’s very easy to be in darkness or the negativity but it is my job to open up the light, open the window or whatever, not literally the window but to see all the good things that are happening.
around me. So I mean, there are so many amazing things. So I have to open that up and not stay in the darkness too long. I can’t stop from happening personally, like this part of my life, but I can get out of it. Like luckily I have those tools, so to speak. Like I can be like, okay, this is happening. This is amazing. Or my family is healthy or whatever it happens to be or
just people being really nice, seeing that, right? But I did have, my hand was like clawed and I would open the door and some people were nice and be like, let me get that door for you. Well, I cannot open my hand to let go of the door. It would almost knock me over several times. So kind of funny.
Bill Gasiamis (57:13)
always funny opportunities like to things to laugh at in that moment. I remember being wheeled in my wheelchair when I first got out of hospital, out of the hospital ward and we were just going around the hospital grounds just to get some sun. My wife was pushing me and I couldn’t feel my left leg and it fell off the, you know, where the feet sit in the wheelchair, the footrest. It just fell off the footrest and it was getting dragged.
beneath the footrest and kind of the wheel of the wheelchair and it was kind of getting dragged and I couldn’t feel it had no idea but my wife was struggling to push the wheelchair
Jorden Ryan (57:54)
She’s like, is wrong with this? It’s so hard.
Bill Gasiamis (57:57)
She
was going, well, this so hard to push. And then we had to have a look around and realize the reason it was hard to push, because my foot is under the wheelchair and I have no idea that it’s there and it’s getting stuck. ⁓ We laughed about it because what else are you gonna do at that moment? It was pretty ridiculous and funny at the same time.
Jorden Ryan (58:16)
That is exactly right. I would say that if I had to give credit to one thing, it would probably be my odd sense of humor now, right? Like there’s so many things to laugh at that it’s hard to say, Matt. That situation you had, it could have been really devastating to you or whatever, or you can be like, that is pretty funny, right? So I had something similar happen to me. My foot came off the wheelchair, but it just stopped. I didn’t feel it.
my leg, but I mean, it felt like I ran over a rock or something like, so similar, not the same, but similar to me. Like, didn’t know if my leg would ever come back, you know? So people are all different levels of their journey. Like I was not upset, but I was surprised to see people in patient rehab. They could walk so well. like, Hey, we are really struggling over here. We’re in a wheelchair. That’s not the right attitude to have, but that’s how it was, you know,
Bill Gasiamis (59:12)
Yeah, absolutely.
Jorden Ryan (59:14)
are fine, get out of here, let us sick people alone, leave us here, so. I mean, I am lucky in the fact that I’m getting a lot more back than I thought that I would, so everything from now on is icing on the cake, so to speak.
Living with PTSD and Double Vision After Stroke
Bill Gasiamis (59:28)
Bonus for sure. I think you talked about PTSD around brushing your teeth, right? How does that show up in your daily life? Do you have moments when that kind of rears its ugly head?
Jorden Ryan (59:42)
Well, I just moved into a new house and the bathroom is right next to it and it’s not so bad now. But when I had to walk and it was more difficult and I had PTSD and self-diagnosed. So I don’t even know if it’s a real thing. It was very scary, right? Like it would almost like give me nightmares. It was so scary.
Bill Gasiamis (1:00:05)
This triggering more than anything, was it?
Jorden Ryan (1:00:08)
Yeah, that’s right. Triggering, guess, is a better way to say it. Yes. So I would be worried and I would be like not wanting to go brush my teeth, even though I know that’s part of hygiene and very important to do. Right. So now I don’t I think I’ve brushed my teeth enough without having a problem that it’s okay now. But at first, like it was extremely difficult. I had the swab things that look like big Q-tips in my mouth.
they would say, use this to pull out the saliva and the, you know, whatever it was. So that’s how I would, I had to brush my teeth like that, then wipe it out. And it was much different feeling. mean, there are so many odd things that happened I can’t remember. And I wanted to tell people on your broadcast because, you know, it is difficult to lay there and be hurting and like so bad with your deficits and seeing a lot of people that are healed because you don’t know if you’ll ever get there.
So I wanted to say that just because like you are bad and your deficits are bad, there is help. There’s a chance. I don’t know for sure everybody, but there is, I think hope is, I learned about it in the hospital and I think that it’s very important to know that there’s possibility of getting better.
Bill Gasiamis (1:01:29)
I love it. You worked in law. What kind of role did you play?
Jorden Ryan (1:01:34)
Basically it looked at contracts to make sure that that was it. I had a… My work is actually surprisingly amazing. Like I worked for the company for about a year and a half. My company sent me get well cards like every week for like six months. Like I couldn’t believe how amazing they were. Because when I was stuck in my bed during like 4th of July, which is huge here in America.
At least I had the cards to look through, know, so that was very nice. But my actual job role was I worked with a small team here and we did contract work to make sure that there wasn’t anything that was, you know, bad for us.
Bill Gasiamis (1:02:18)
Everybody ⁓ who works uses their voice. We communicate with it. We ⁓ express ourselves. ⁓ We argue with it. We do all sorts of things with it. Voice, right? So so important, right? To have your voice. What was it like when you realized that your speech was different and that, did that kind of shift your identity or make it feel like it was different or changing? How do you deal with it?
Jorden Ryan (1:02:48)
Yeah, actually I that was one of the most pressing things like my leg not working my arm not working my eye not working was like Okay, but did not be able to talk like the people that flew in and I can’t even say hi or thank you for coming or anything It really made me not feel like a human to be honest with you. I just It was a terrible feeling and so it was that was one of the main reasons that I didn’t want
to go on basically because I couldn’t communicate at all. Some people have it where they can’t think words or where they can’t do the, I mean, I couldn’t say anything. it was very difficult, it was very hard to not be able to talk to people because I do communicate every second of my life as far as I know. So to not be able to communicate at all, it was very difficult. I had to point at things and try to write stuff out even though I couldn’t write. So it was…
pretty hard.
Bill Gasiamis (1:03:48)
Yeah, pretty hard. Indeed, were you guys using boards or any particular devices to help with the communication in early days?
Jorden Ryan (1:03:57)
In the early days I had a board but because my right hand was also affected with my salivator I think this had like 25 to 50 percent I couldn’t write with either hand so it was chicken scratch that you could barely read or anybody could barely read so as much energy as it was like it didn’t really make sense to do. They had something on my face the vital stem is what it’s called to help be able to swallow.
And luckily, think that helped my, you know, it’s hard to say what heals you because there’s so many things that play a part in it. But I was able to, somebody could understand some words that I said at least. So that was a very positive start.
Bill Gasiamis (1:04:45)
Yeah. Let’s talk about your rehab and your process. Tell us a little bit about what worked for you and why.
Jorden Ryan (1:04:56)
Yes, let’s see, I lived in an area that was very cold and my doctor at the time said we’re not gonna do telehealth and that was very difficult to go out in the cold and my body would freeze up and what have you. So that was not good, I had to switch that. My first thing that really helped was I had a slack line. It is basically a dog run for lack of better way to say it. And I had a harness and that I put on the slack line was about waist high.
and I just walked and I did that because there was a rail at the YMCA that I walked by and I was like, wouldn’t that be nice if I had an outside rail that I could just use to walk and so I had slack line and then underneath it, I wore it out like a dog or a cow walking all the time and like because I could not use my my left leg was not very strong at all but it was getting stronger. You know, I tried to jump
like up and I could not even inch vertical it was zero and I couldn’t bend my legs up so I think that was the start of something that really helped me because I could go do it like any time of day or night I mean I didn’t do it 2 a.m. but I did it it was easier to do instead of having to rely on someone to give me a ride somewhere ⁓
Bill Gasiamis (1:06:17)
Yes slackline.
Jorden Ryan (1:06:19)
What?
Bill Gasiamis (1:06:20)
Get
a slackline.
Jorden Ryan (1:06:22)
I got it off of Amazon. Yeah, just put it up there. But I didn’t use it like a slackline. didn’t watch.
Bill Gasiamis (1:06:25)
Okay.
Yeah, I understand. ⁓ I just didn’t know it was a thing that you could even get one. I mean, I’ve never had one. I’ve never thought about one, but like it makes complete sense now, but I didn’t realize. I should have realized that you can get everything off Amazon, but that’s all right. I was just trying to wrap my head.
Jorden Ryan (1:06:49)
There are tons of things I didn’t think of right so I mean everybody Usually thinks of something that works for them But the slackline with it being strong enough to hold your weight walking on it was strong enough to hold me up and so it was really fantastic and I could tell if I was gonna get tired and I had a place to sit out there and so it was really good I mean when I first started that was that was all the rehab I needed kind of to me. I had also a
A thing that is battery operated that sends like so your hand will go like this I can’t remember what it’s called it’s like vital stem but just on Amazon too and I would work that every day tried to get my hand to open and tried to because they try to get you to turn a key imagine a key like you’re starting your car but with your other your affected hand and this would help that like it would wake up those muscles so kind of
Bill Gasiamis (1:07:49)
Yeah.
Jorden Ryan (1:07:50)
So that was very helpful too and I got some I guess I would say they’re kind of like child’s books. There were stroke books on Amazon as well or I would draw. And it was so scary because I was always told use it or lose it. And I was like, well, what about sex? Like, mean, I didn’t say that probably because I was too embarrassed, but to keep hearing use it or lose it forever, like
and not have a girlfriend or a wife, I was like, well, am I never gonna have sex again? And that was very scary to me.
Bill Gasiamis (1:08:23)
Yeah. Do that remedy itself. Is that something that’s happened since then?
Jorden Ryan (1:08:27)
It
is, it has not happened yet, but I don’t have the same concerns that I had. Like I think to say it politely, I think that I’m able to perform in the bedroom. don’t know though. So maybe I’m going to say that I can’t just to feel better about myself, but definitely my libido or whatever has gone down, you know? So, ⁓ it is what it is, as they say, like maybe it will pair, maybe it will not. don’t know.
Bill Gasiamis (1:08:57)
Yeah, I know these things change. Sometimes libido gets definitely, not sometimes, often. For both men and women, libido gets impacted negatively after a stroke. And it can recover as well. But there’s also, for men, there’s also things you can get to help you. ⁓ It might be that you need to have your testosterone looked at. It might be that you need to have a Viagra if necessary. There’s ways that you can get around it.
Jorden Ryan (1:09:21)
The testosterone is hard for me. say with my ⁓ aneurysm that I should not take testosterone even though it is now. But you’re right, all the other things, the Viagra, what have you, yes, you can do that. It was somewhat scary to me because a neurologist, brain doctor, had told me that stroke should not affect your sexual ability at all.
I was like, well, maybe I’ve been in the hospital so long, that’s the problem. And so I just didn’t, I mean, as you know, you just don’t know. So hopefully, yeah, I will be able to talk to the doctor about that. I think after being in the hospital the first time, my modesty is kind of out the window. Like I had to do so many things in front of nurses that asking difficult questions is not as difficult as it once was.
Bill Gasiamis (1:09:57)
Yep. Yep.
Yeah, I imagine having had your diaper changed by a nurse at the age of 40 something is probably one of those moments that kind of says, well, I’ve done that. If I’ve done that, everything else is a piece of piss, so to speak, after that, as we say.
Jorden Ryan (1:10:27)
Yeah, you’re right.
Right, that’s exactly correct.
Bill Gasiamis (1:10:39)
I hear you. ⁓ So after being discharged, right? What was it like to navigate your life again on a daily basis? How did that feel? What was it like to go through regular, well, quote unquote, regular life again?
Jorden Ryan (1:10:56)
⁓ it was very difficult for me. I was lucky that I don’t have a wife or maybe unlucky and children. So, you know, sometimes I would just stay in bed or I would just listen to a book on seat or I guess MP3 out of a bubble or something like that. And, ⁓ everything, it was extremely difficult for me. Like I said, I would try to get my, the first one, I to take my walker. It’s so scared because when you’re in the hospital,
Everything is with somebody like you can’t get up out of your chair. You can’t go do anything So all of a sudden you’re just you’re free like go ahead And like the same day or the day before this was a big no-no now. I can just do it and like yep so I mean, I’m still scared to cut things with the knife like vegetables stuff because I’m on blood thinner and I don’t want to have an accident I mean you don’t know what you don’t know so I
cognitively, I think that I’m there, but I also think that could walk, right? And that’s not true. So I don’t know what could happen and what could not happen. So rehab is just, I try to do, be dangerous, the safest I can. Like I walk, but I try to make sure that I can grab onto something or if I’m gonna like try to walk, I can fall or I’ll be by my bed or something like that. And so it is difficult to try to be by myself even now. It’s been a
over a year.
Bill Gasiamis (1:12:24)
It sounds like it’s good therapy even though it’s difficult.
Jorden Ryan (1:12:28)
Yeah, it is. think that was one of the very positive things about living by myself was that I don’t have an excuse to not do anything, you know, because people are really nice and they’ll take care of you and maybe overly sometimes not because, I mean, they just don’t know. And I’m not going to say no necessarily, even though I should. I don’t have the choice. You know, I have to do it. let’s see that learn how to do it because I, my right hand is still pretty good.
when they say they tie their hand up or whatever. I didn’t do that, but I imagine having kids would be difficult for me because I couldn’t barely do things with my left hand. Like, forget it. I would just do it with my right hand. anyway, I say that because yes, I am learning a lot more now, even though ⁓ it has been over a year. It is scary to read stuff, facts, I think that are outdated that say, you know, your height and specificity is a year. Then after that,
Probably not as much. Things aren’t gonna happen as fast. I have not found that to be true, but who knows?
Bill Gasiamis (1:13:36)
Some of those old sayings are, I think, outdated as well. And one of the most outdated, most ridiculous things that you hear is when doctors say, you’re probably not going to get any better than that. That still happens, even though that should have stopped in 1933. It’s ridiculous that people still say that, but they do. I don’t know why, but they somehow get embedded in language, some of these things.
Jorden Ryan (1:14:03)
I was told that just I think this month actually because they have a device that they can put in your neck and it messes with your vagus nerve I think. And yeah and the doctor said well you’re not gonna get any better than you are anyway so don’t worry about it. And that was like okay like like he was like that’s the best like I said did I work on it still he’s like nah that’s the best as it will get. thought I mean
Bill Gasiamis (1:14:13)
Yeah, we’ve a ste-
Being Told “You’ll Never…” by DoctorsJorden Ryan (1:14:33)
it, I can take that verbiage, luckily, and use it for proving him wrong. Right? Like, I think it would be easy to be down again. And instead, I’m just like, well, I’m going to show you that you don’t know what you’re talking about. Even though this person has way more education than me. And, you know, kind of on a pillar or a platter, like higher up or whatever you want to say, just like, well, here what you had to say to me. But you know, I think that
If I did have cognitive issues, I would really have a hard time going through the medical system and especially what doctors say. It is, I mean, it is scary. I’ve had more doctors than I can imagine, different cities and different areas and they say different things. So again, I took that to my advantage of I got to choose my own destiny instead of a doctor saying, that’s the best you will get ever. It’s like, yeah.
Bill Gasiamis (1:15:29)
Yeah, I love it, man. That’s the best way to go about it. I’ve spoken about it so many times on these podcasts, people saying, hearing dumb stuff from doctors. And then it’s like, I don’t know. I don’t know why it still happens. It shouldn’t be happening. I’d love to get a doctor when they say it, pull them aside and go, that’s the dumbest thing you could ever possibly say to a human being. Never say that ever again. ⁓ I kind of did that when I had thyroid surgery.
I had half of my thyroid removed ⁓ just before my after my stroke, my brain surgery about a year and a half later. And the surgeon came in after we’d done all the tests and she was trying to encourage me to have the surgery. And she said, we’ve got the results from your tests. They’re inconclusive. So she goes,
But that doesn’t mean it’s not cancer. So it could be cancer and it could not be cancer. And then she closed the door and walked out of the room and I was.
Jorden Ryan (1:16:35)
Yeah, you decide.
Bill Gasiamis (1:16:37)
And I was in the room with one of her, I think you guys might call them attending, just a very fresh new doctor that’s learning. And she looked at the young doctor looked at me with horror, shock horror. And I looked at her and I said, don’t ever do that to a patient ever. Don’t worry. I said, it’s not your fault, but that’s disgusting what she just did. That’s terrible. So then I waited for our meeting, which was gonna be about.
10 or 15 minutes later. And when we went in the meeting, ⁓ the surgeon came to me and said, ⁓ hi, how are you? How’s things? And I said, look, I’m okay, but I need to talk to you about what you said to me earlier. She goes, what did I say? I said, you said you dropped the C word, then you closed the door and you walked out.
Jorden Ryan (1:17:27)
Yeah, that’s pretty big word. think even bigger than the other C word. I think that is pretty bad.
Bill Gasiamis (1:17:34)
I said, you can’t do that. You can’t do that to a human being. Now I’m not the kind of guy that would get offended or upset about that because I know it’s not cancer, even though you don’t want to rule it out. But that’s not how you have a conversation with a human being. Let’s do me a favor. Let’s rewind and go back to the beginning and let’s talk from scratch. I’ll come in the door, you introduce yourself again and we’ll start off like that. And we did that. ⁓
We a little role play. She was devastated at the same time, but I think that was a little lesson that made her think about maybe be careful with what you say in front of patients who could be vulnerable in your care. They’re in your care, so they’re vulnerable. They’re coming to you for support, not for trauma.
Jorden Ryan (1:18:06)
Yeah.
Yeah, I think I need you to go to my appointments with me. Tell the doctor some of these things because you’re right. Some of them do say stuff that is… I don’t know if they don’t know that it’s outlandish or they just do it so often they don’t realize it but when you are a patient and you hear something like that it’s a big deal. They say it like it’s nothing but yes of course it is a possibility but you know come on but…
I have all these surgeries they can do for me ⁓ such as a cochlear implant where I can hear out of this year because it’s so difficult but I can’t not come off the blood thinner. So there’s only a 5 % chance that I could have another stroke or so they say but man the strokes are hard. I remember walking around the YMCA one lap was no 10 laps was a mile and I was like this is crazy because I could only do maybe two with my
uh, Walker, and I heard you saying that you learned to walk twice, I was like, oh, I don’t think I could ever do that. And, uh, I remember thinking, I guess I would do it a hundred times if I had to, but boy, I sure wouldn’t want to.
Bill Gasiamis (1:19:35)
Yeah, I actually didn’t learn to walk twice. I learned to walk a second, once only. So maybe I explained it a little bit incorrectly or something, but yeah. I know people that have though. I definitely have interviewed people that have had to go back again and go again and go again because they kept having multiple episodes. So.
Jorden Ryan (1:19:56)
You
were my full model. So, no, I’m just kidding. I had to do it, you know, two other times other than when I was an infant, whatever, baby, whatever, it was so… ⁓
Bill Gasiamis (1:20:09)
I don’t care if you got it wrong and I was your role model and it didn’t happen. It was just imagined. I’m glad that it worked out for you.
Jorden Ryan (1:20:16)
I should say thank you because people were like, I can’t believe you’re doing so much and you’re doing so well after my first stroke. And so when I had my second one and it put me right back in a wheelchair, it was so much harder. Like it was hard to explain how much difficult it was. People say like, well, you already know what to expect, even though I didn’t because it’s the brain, like who knows what it is. Like it was much harder.
Bill Gasiamis (1:20:18)
Great.
It’s more injury, it’s less brain that you’ve got to work with now every bloody time.
Jorden Ryan (1:20:49)
Right, so even though got back quick after the first one, the second one was so much harder mentally and physically and all that kind of stuff. But yeah, you were, you inspired me one way or the other.
Bill Gasiamis (1:21:05)
glad. I didn’t really care how I did it as long as I did it.
Jorden Ryan (1:21:09)
Outwalking was, you know, a nice thing to see. Like, you do some of your podcasts, I think anyway, if it was you, maybe I’m confused, that you do some outwalk outside.
Bill Gasiamis (1:21:19)
Walk. Right?
I did, yeah. They’re my favorite ones to do, but they’re the hardest ones to do as well because ⁓ they require you to be really in flow and out of your head. So if you’re thinking about what you want to talk about, it’s really hard to do it. And also I get really self-conscious when people walk past me and I’m talking to a stick ⁓ and a camera. It’s just a bit weird.
I know heaps of people are doing it and they’re comfortable with it and it’s good content because I know people love watching it, but it’s just so hard to do. And especially in winter, like I don’t want to be outside doing that stuff in winter. I don’t mind sitting down here and doing it. I will do some more walking once. I definitely will. But I think I’ll prefer to find somewhere where that’s a little more secluded where I don’t have to worry about people coming into my frame or into my field of view or something like that. It’s just so hard.
Jorden Ryan (1:22:16)
Yeah, well, I just appreciate it for sure, because when I was learning to walk, could not. Having a phone in my hand was a pipe dream, so to speak, because I had to look every step, every inch to control my body. So to even think about having a phone and walking was so difficult. So seeing you outside and enjoying the nice weather was a treat for me. I’m not saying you have to do it anymore. was, you know, it’s out there to see for people. So that was really good.
Bill Gasiamis (1:22:45)
I will, I definitely will though. ⁓ What kind of guy are you becoming? How would you describe yourself today?
Jorden Ryan (1:22:53)
⁓ How would I describe myself? I don’t know. I don’t think that I’ve tried to do that. So I will try to right now. I just think Perseverance, mean water I just whatever comes at me. It’s just more of a well, okay Let’s see what we can do about it. Like before it was not like that I would try to stop life from happening, but Unfortunately, I don’t have that kind of power life happens, right? So I’m more like well
I can only do what I can do and like the rest, whatever. You know, so that I think that’s the kind of person I am now. It’s been a major mind shift, totally different than what I was before. And instead of worrying about every little thing or maybe I won’t wake up tonight. mean, I just let’s get, let’s go after it. Let’s get it done. Right. So I don’t know. It is scary too. It’s sometimes to go to sleep because I have my CPAP machine on.
And then I’m like, maybe this will cause another stroke. Maybe I should stay awake. That’s ridiculous, I have to get some sleep. But I’m just, now I think that I just do it, you whatever it happens to be. Whether it happens to be walking down the hall or it happens to be, the good thing about me now is that I don’t care what I look like. I don’t care about like…
I have my why or whatever and so nothing else matters, right? I’m dialed in. Like I don’t care if I have food on my face or like one bad example is I was working out the why and workout was like standing up. It wasn’t hard. It wasn’t like hardcore aerobics or anything. And I peed my pants a little bit. Like instead of not working out and not doing anything and going home, I just was like, ⁓ I guess, I mean, it wasn’t like all over the equipment or anything, but.
It was enough that I was like, okay, I will stay at the gym and get things done where before I would never do that.
Bill Gasiamis (1:24:51)
Yeah, I love it. David Goggins, you know David Goggins?
mental runner who doesn’t stop running under any circumstances. Nothing is going to get in the way. That was very Goggins-esque what you did. ⁓ I paid my pants. So what? Keep going.
Jorden Ryan (1:25:12)
Yeah, I mean he’s a little bit crazy as far as I know but yeah, maybe I am more like him now I mean it was like well that that happened. Let’s keep working out. That’s what I came here to do so and again people are like why are you at the why for three hours and you know, just standing there was workout for me it was not Like I went and ran seven miles an hour or something for the whole time just being away and out of the house and
trying to do something so I’m very dedicated to try to get better.
Bill Gasiamis (1:25:45)
Yeah, a marathon can look different for everybody, you know, it doesn’t have to be 42 kilometers. A marathon can be literally just getting out of bed today and going to the toilet and then doing it quicker tomorrow or feeling safer tomorrow or feeling more stable tomorrow. know, that can be the marathon. It doesn’t have to be a feat of endurance that lasts for 42 kilometers. It can just be, got up, I got out of bed, I succeeded.
and tomorrow I’m gonna be better at it.
Jorden Ryan (1:26:17)
I love that and even if you are worse at it, like the desire to get better at it the next day, like it’s just a totally different mindset. can’t, I wish I could put it in a book or be good like you and do podcasts, but it is completely different. Like if I did worse, it is still like, okay, well tomorrow I’ll do better. It’s okay, no, it’s not a big deal.
Finding Meaning After Stroke
Bill Gasiamis (1:26:40)
Yeah, yeah. If you could distill your recovery into one lesson or gift, what would it be?
Jorden Ryan (1:26:45)
Boy, that’s pretty difficult. I would say that, I don’t know, maybe love is my religion or I think just being alive is enough sometimes, right? Like, okay, I am not who I used to be. I could either be sad about it forever. I could be like, hey, I’m alive still and I get to see my nieces grow up or I get to see amazing things. can still, and you know, I about lost my…
vision the second, well both times, you know the second time and I was kind of pretty upset because one thing of me all the way through my body was messed up and I was like well if only my both my legs were good that would be great right or both my arms were good I could at least do the wheelchair pause like pretty good or I wish both of my eyes were tight I could read what I have all this time off but none of the
I was thinking how selfish is that? I mean I have one thing that works so I need to get it together right and live the best life that I can. I think that is probably what I would say one sentence is ⁓ live the best life that you can. Whatever you’re into if it’s doing nothing then it’s fine but if it’s just be happy be content of what you have.
Bill Gasiamis (1:28:05)
That’s beautiful, mate. And on that note, thank you so much for joining me on the podcast. I really appreciate you sharing your story.
Jorden Ryan (1:28:12)
I really appreciate what you’re doing, like not just to boost your ego, I mean you’ve really helped me a lot so, and hearing other people’s and getting through so thank you so much for your time and have a good
Bill Gasiamis (1:28:26)
Well, thanks again for listening to Jordan’s story. His journey through two strokes, double vision, fear, setbacks, and the fight to stand again is a reminder that recovery isn’t linear, but progress is always possible. If stroke recovery feels confusing, isolating, I completely understand. I’ve lived that part too. That’s why recovery after stroke exists to give you real stories and insights that guide your recovery so that you can feel more confident, informed, and in control of your progress.
If you’d like to go deeper, remember to check out my book, The Unexpected Way That a Stroke Became the Best Thing That Happened. You can get it at recoveryafterstroke.com slash book and support the show on Patreon at patreon.com slash recovery after stroke. Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals.
Opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed. All content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gassiamus. The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical
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Hemorrhagic Stroke Patients Recovery: Jonathan’s Journey Through Chaos and RenewalWhen the clock struck midnight on January 1st, 2021, most people were celebrating a fresh start. Jonathan, at just 35 years old, was unknowingly entering the most challenging chapter of his life. His speech had begun to slur, his head pulsed with pain he couldn’t explain, and within hours he was rushed to the hospital during the height of COVID restrictions.
That moment was the dividing line between the life he once knew and the life he would rebuild from the ground up.
This is a story about what hemorrhagic stroke patients recovery really looks like, the kind that forces you to confront who you used to be and decide who you’re going to become next.
Before the Stroke — A Life Built on MomentumBefore everything changed, Jonathan was thriving. He worked in food science — a field he loved, filled with global imports, inspections, and ensuring food safety for the public. He enjoyed hiking, biking, dinners with friends, and a vibrant social life in the city.
He’d finally built independence, moved into his own space, and was exploring a new relationship.
His life had rhythm, structure, forward motion.
But as many survivors later recognize, stroke doesn’t appear at a convenient time. It arrives abruptly, often when everything seems stable. And for people seeking to understand hemorrhagic stroke patients recovery, this contrast before and after becomes a core part of the journey.
When the Body Sends SignalsIn the days before the stroke, something felt off. Jonathan experienced intense migraines, stronger and stranger than anything he’d felt before. But like so many young survivors, he didn’t recognize them as warning signs.
Then, on New Year’s Eve, his speech began to fall apart. Words wouldn’t line up. Sounds emerged out of order.
His girlfriend noticed instantly: something was horribly wrong.
In minutes, Jonathan went from preparing to welcome the new year to being rushed through hospital doors under strict pandemic protocols. He had no idea this day would reshape him forever.
Early symptoms often become the first chapter of hemorrhagic stroke patients recovery, because they reveal how quickly life can break open.
The Diagnosis No One Expects at 35Doctors discovered an AVM — an arteriovenous malformation on the left side of Jonathan’s brain. It had ruptured, causing a hemorrhagic stroke.
The bleed had stopped on its own and even drained naturally, something his neurologists called miraculous.
Still, the damage was significant:
- His speech was severely impaired
- His mobility weakened
- His memory disrupted
- His emotional world destabilised
He heard the words “hemorrhagic stroke” and “AVM rupture,” but they didn’t make sense at the time. Many survivors describe this moment as surreal, as if the diagnosis is happening to someone else.
“When your own words disappear, your whole identity feels like it’s gone with them.”
Recovery in Isolation — A Stroke During COVIDAfter only seven days in the hospital, Jonathan was sent home in a wheelchair. There were no open rehabilitation centres, no inpatient programs, and no in-person speech therapy available.
Therapists arrived at his family home wearing full PPE, “like a movie scene.” Everything felt unreal.
- Occupational therapy
- Physiotherapy
- Cognitive rehabilitation
- Speech therapy (virtual for an entire year)
- Social work support
- Nutrition guidance
All delivered at home, all while the world was shut down.
This is the reality for many navigating hemorrhagic stroke patients recovery during unpredictable times: healing becomes a collaboration between professionals, family, and faith.
Losing Everything — And Feeling All of ItThe physical deficits were challenging, but the emotional costs cut deepest.
Jonathan lost:
- His job
- His independence
- His ability to drive
- His long-term relationship
- His financial stability
- His sense of identity
Anger, sadness, frustration, and confusion were constant companions. These emotional injuries rarely show up on scans, but they shape recovery just as strongly as the physical ones.
And like many survivors, he wondered:
Who am I now? Will I ever get myself back?
This is where recovery becomes something deeper than rehab. It becomes a reorientation of the self.
The Turning Point — Gratitude and Mindset ShiftOne of the most powerful moments in Jonathan’s story came when he realized he could walk again. And speak again. And see his family. And simply breathe.
He realized:
I am still here. I have another chance.
Gratitude is rarely the first emotion during a stroke recovery. But eventually, it becomes one of the most transformative.
Mindset is one of the greatest predictors of hemorrhagic stroke patients recovery, not because positivity fixes everything, but because a resilient mindset helps survivors keep trying even when the path is uncertain.
I’ve been there myself. When I experienced my strokes, I knew instantly that certain habits and patterns in my life had to change. Not because anyone told me to, but because something inside me shifted.
You begin to recognize what no longer serves you.
And you begin to aim your life differently.
Faith, Identity, and Rebuilding From the Inside OutFor Jonathan, faith became a compass. He studied scripture. He leaned into prayer. He found community in his church and mentorship in his pastor.
Whether someone practices religion or not, the principle is universal:
Recovery requires trust — in yourself, in the process, in the possibility of your future.
Faith, in its many forms, becomes a stabilizing force in chaos.
From Survivor to Guide — Serving Others Through His PainAs Jonathan regained strength, he realized he wanted to give back.
He became a volunteer with:
- March of Dimes Canada
- Heart & Stroke Canada
He now supports survivors aged 20–80 in both English and Spanish, one of the most unique and powerful aspects of his journey.
The moment a survivor steps into service, their recovery deepens. Helping others expands meaning, connection, and purpose. I saw this in my own journey when I became a stroke advocate and launched this podcast.
Jonathan discovered a simple truth:
Helping others helps you heal too.
Visit:
???? recoveryafterstroke.com/book
???? patreon.com/recoveryafterstroke
Building a New Life — Marriage, Mentorship, and HopeIn 2024, against all expectations, Jonathan got married. He started his own mentorship initiative for survivors, still volunteers across Canada, and continues to rebuild his life with clarity and gratitude.
His story is less about “getting back to normal” and more about discovering a new, purposeful version of himself.
What Jonathan Teaches Us About Hemorrhagic Stroke Patients Recovery* Recovery is not linear. * Identity gets rebuilt, not restored. * You don’t need to do this alone. * Emotional healing is just as real as physical healing. * Gratitude can shift your entire experience. * Community accelerates recovery.
Most importantly, your life didn’t end with your stroke — a new one began.
A Young Man’s Fight Back: Jonathan’s Hemorrhagic Stroke StoryA young survivor’s journey shows what hemorrhagic stroke patients recovery can look like — courage, faith, and rebuilding life step by step.
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Highlights:
00:00 Introduction to Jonathan’s Journey
01:31 Life Before the Stroke
05:41 The Day of the Stroke
14:02 Hemorrhagic Stroke Patients Recovery
23:05 Emotional Challenges Post-Stroke
31:38 Overcoming Bad Habits and Health Challenges
37:38 Finding Purpose Through Volunteering
45:31 The Role of Faith in Recovery
55:32 Understanding Suffering and Connection to God
01:01:01 Building Community and Fellowship
01:05:31 Future Goals and New Beginnings
Transcript:
Introduction to Jonathan’s Journey
Bill Gasiamis (00:00)
Today’s episode is one that really stayed with me long after we finished recording. You’re going to meet Jonathan, a young stroke survivor whose life changed in a moment he never expected. And what makes this conversation so powerful isn’t just what happened to him, but how he tried to make sense of it, rebuild from it, and eventually find direction again. I won’t give away the details. That’s Jonathan’s story to tell. But I will say this. If you’ve ever struggled with the fear, uncertainty, or emotional weight that comes after a stroke,
You may hear something in this journey that feels uncomfortably familiar and surprisingly reassuring. Now, before we get into it, I want to mention something quickly. Everything you hear, the interviews, the hosting, the editing, exists because listeners like you keep this going. When you visit patreon.com/recoveryafterstroke, you’re supporting my goal of recording a thousand episodes so no stroke survivor ever has to feel like they’re navigating this alone. And if you’re looking for something you can lean on,
throughout your recovery or while supporting someone you love, my book, The Unexpected Way That a Stroke Became the Best Thing That Happened is available at recoveryafterstroke.com/book. It’s the resource I wish I had had when I was trying to find my way. All right, let’s dive into my conversation with Jonathan now. Jonathan Arevalo, welcome to the podcast.
Jonathan Arevalo (01:23)
Yes, hi there Bill.
Bill Gasiamis (01:26)
Jonathan, tell me a little bit about what life was like before the stroke.
Life Before the StrokeJonathan Arevalo (01:31)
Well, life before stroke at 35 years old was good. It was really good. I had the opportunity to travel a lot and also I worked for a company related in foods. And it was something that I had a passion for since I studied that in university when it came to studying chemistry.
biology and also food sciences. And during that time is what led prior to my stroke, which was in January 1st, 2021.
Bill Gasiamis (02:14)
So you did, ⁓ you worked in food sciences. What kind of work did that involve? What does a food scientist do?
Jonathan Arevalo (02:24)
So for that type of job, worked as ⁓ specifically, it was QA coordinator, which I was in charge of all food products that come from all over the world into Canada, where I had to do audit checks, inspections, and make sure that every single fruits and vegetables had to meet the requirements, which are government requirements, and also meeting specifications.
for the safety, the safety before it goes out to the public.
Bill Gasiamis (02:57)
Wow. Was that a government job?
Jonathan Arevalo (03:00)
It was not a government job. It was more of a food company that is known all over North America.
Bill Gasiamis (03:11)
So just a very popular food importer for example that brings different products in and you’ve got to check them and inspect them So what do you do you opening boxes and looking literally at the food before? ⁓ gets the tick
Jonathan Arevalo (03:26)
Yes. So before anything gets accepted, ⁓ I receive C of As, which are certificate of analysis that come from different countries. And I need to go through all of those to make sure it meets government regulations and at the same time for the health and safety. So all of that, ⁓ I had to make sure both
reading it and as well physically inspecting myself. Yeah.
Bill Gasiamis (04:01)
I understood. What about home life? What was that like? How were you? Where were you living? Who were you living with?
Jonathan Arevalo (04:08)
Yes. So when it came to that, I was living in the city and I was living with ⁓ an ex-girlfriend who I was during that time. And what it was, it was a different change in life where I started to adjust a new relationship. And at the same time, I was adjusting in building my independence outside from home.
and starting like my own life differently. But everything went well until things started to change when it came to relationships and also work and also other things that came along with it over time.
Bill Gasiamis (04:58)
What did you do for downtime? Do you have some hobbies or are there some things that you enjoy doing after work or on the weekend?
Jonathan Arevalo (05:07)
Yes, yes. Usually, ⁓ would mostly hang out with friends, go out to meet up with friends to different places. We’d go out for dinner, out in the city. And also, I was very active, so we would go to different trails to do hiking. ⁓ Or also biking, like riding the bike and all that.
So different activities like that to stay active.
The Day of the Stroke
Bill Gasiamis (05:41)
Do you remember the day of the stroke? did you start noticing something going wrong? What happened on that particular day? What was different about that day?
Jonathan Arevalo (05:52)
Yes, well leading to the stroke, was more during Christmas time. So in ⁓ this exact same time in December, where it was leading to my stroke that I started to get certain signs of, I wasn’t too sure what it was though, because I was getting some headaches and something very intense that I never had before, which are migraines.
And that was leading prior to the stroke and starting the new year. so then pretty much like on the 31st, leading to January the 1st, was the moment that I had my stroke. And then my ex-girlfriend who I was with during that time, which is already almost five years,
⁓ she noticed that my speech was, was, was going off. I had a lot of slurs in my words. I was getting like very intense headaches and it just didn’t seem normal. So she started to question and ask me questions that didn’t, didn’t make sense. So she automatically ended up calling emergency and I got rushed, ⁓ through emergency to, the hospital.
starting the new year.
Bill Gasiamis (07:22)
Well, so first of January 2021, was it?
Jonathan Arevalo (07:27)
Yes, January 1st, 2021. Correct.
Bill Gasiamis (07:30)
Wow, man. First day of the new year, straight into hospital.
Jonathan Arevalo (07:34)
straight to the hospital, but not only straight to the hospital, but it was also during the time of COVID. And so that made it even more complicated because in the hospital, there was different cases going on at the same time. And whether it’s doctors, nurses, or different people entering and going out, ⁓ there was
Bill Gasiamis (07:42)
Uh-huh.
Jonathan Arevalo (08:04)
a lot of restrictions that was going on that certain people weren’t allowed to go in unless it was an emergency purposes. And also I had to wear a mask and all that because they weren’t sure whether I had COVID or it was something else.
Bill Gasiamis (08:26)
So do you, is this a story that you remember or somebody has told you about what happened that day? Because sometimes people hear the story from others, but they don’t remember going through it or what they were thinking or what they were feeling. What were you thinking or feeling during this whole thing with the strange migraine and then being taken to the hospital?
Jonathan Arevalo (08:49)
Yeah, for me, I slightly remember since I had ⁓ very, very like, like vague ⁓ scenarios that I was ⁓ that I still remember. But there’s other occasions that I don’t remember anymore. Like I lost a lot of that memory during that period of time because it happened so quickly that
that it was also a first time experiencing having a stroke. But I do remember like certain scenarios of being picked up from paramedics and then being rushed to the hospital. And then from there, not that much what happened afterwards, are certain things that I’ve forgotten or it’s hard to remember.
Bill Gasiamis (09:46)
Yeah, so you’re in the hospital. Do you understand when they tell you that we’ve discovered that you’ve had a hemorrhagic stroke? Like, are you aware of that? Or is it just noise? What’s it like to be told that you ever had a bleed on the brain?
Jonathan Arevalo (10:04)
Yeah, I find it that it’s very hard to understand that because I didn’t know what a stroke was in that time. And not only a stroke in general, but also the type of stroke that I had, which was a hemorrhagic stroke. But not only was it hemorrhagic stroke, it was as like the couple of days passed by,
I was also transferred to another hospital since the hospital where I was at, didn’t have the adequate ⁓ neurologist and specialist for stroke. So I believe it was on the third day or something like that. I was taken to another hospital where they do have specialists, neurologists and all that related to stroke. So they took my case because it was something very important.
And at the same time, they didn’t understand how I survived it as well because it wasn’t just a stroke on the left side of my brain. They found that it was an AVM. So it’s called anterior venous malformation, which could be caused from childbirth. As you get older, it could start to develop where you really don’t know because it’s internal.
So what triggered it was an aneurysm that made it rupture.
Bill Gasiamis (11:43)
We’ll be back to Jonathan’s story in just a moment. wanna pause for a second and ask you something important. Why do you listen to this podcast? For many people, it’s because they finally hear someone who understands what they’re going through or because they learn something that helps them feel less alone in their recovery. And here’s the part most listeners never think about. This show only stays alive because of people like you help it keep it going.
There’s no big company funding it, no medical organization covering the costs. It’s just me, a fellow survivor doing everything I can to make sure these episodes exist for the next person who wakes up after a stroke and has no idea what happens next. When you support the podcast, you’re making sure these conversations stay online. You’re helping cover hosting and production fees, and you’re making it possible for new survivors months or even years from now to find hope when they need it most.
Hemorrhagic Stroke Patients Recovery
Some people think my support won’t make a difference, but that’s a misunderstanding. Every single contribution is what keeps this podcast available for free to the people who need it most. And if you want to go even deeper on your recovery, you can also grab a copy of my book, The Unexpected Way That a Stroke Became the Best Thing That Happened at recoveryafterstroke.com/book. Yeah, I know all about arteriovenous malformations. That’s why I’m…
talking to you on this podcast because I had one of those in my head on the right side, near the cerebellum and it bled for the first time in November, in February 2012 was the first time my one bled. ⁓ But ⁓ I had numbness on my left side, the entire left side for a whole week before I went to the hospital. And then when they scanned my head, they said, we found a…
a shadow on your brain. The shadow on my brain is the white part on the brain scan on the MRI that reveals the bleed and the bleed. The bleed was caused by this blood vessel, faulty blood vessel that they called an AVM that burst and then created a lot of trouble, right? And then the whole journey begins and then it’s just, you know, starting out. So,
with mine, eventually they removed it from my head with brain surgery. How did they rectify the bleed in your brain? What did they do to stop it bleeding?
Jonathan Arevalo (14:15)
Well, it didn’t, it stopped on its own actually. ⁓
Bill Gasiamis (14:19)
Sometimes
they do that. I was told that sometimes they stop on their own and they don’t have to take any further action. But with mine, it bled another two times and they had to have brain surgery. But with yours, luckily, it stopped bleeding on its own.
Jonathan Arevalo (14:34)
Yes, Bill. So in reality, it was a miracle. It was a miracle behind it because it stopped the bleeding, but it also drained the bleeding that was inside. So it was like a drainage on its own. And that’s the miracle itself. And the doctors had a team of 10 in the hospital trying to monitor me.
and see exactly how did it happen and at a young age and someone that’s healthy and doesn’t have a history of being in the hospital or anything such as that. So that was the miracle itself. So the neurologist ended up ⁓ with their team. They ended up having, I had an angiogram.
And the angiogram was done through the side of the groin that goes up to your head, which they tried to ⁓ detect exactly the AVM. And that’s how they were able to find only one specific one that ruptured.
Bill Gasiamis (15:53)
Yeah, I had the same procedure through the groin and ⁓ they put the the contrast into the brain and then they take photos of that and it shows exactly where it’s bleeding. And that’s an interesting experience because you’re awake the whole time and they go past your heart and they go up into through your neck and then they go into your brain.
Jonathan Arevalo (16:11)
Yes.
Yes, it is. was like an experience that it’s hard to explain, but I felt like electricity in my body. And I don’t know why I felt electricity in my body, but I felt like shocks in my brain or like fireworks. And I was thinking, what’s happening?
Bill Gasiamis (16:19)
Pretty crazy.
Fireworks.
Jonathan Arevalo (16:47)
But the hardest part, Bill, was the fact that I had lot of difficulties in speaking. So words wouldn’t come out. For me, was like I tried to explain myself through, I don’t know how to say it, emotion.
So like facial, facial expression, kind of like when you feel in pain or something like that, or you’re trying to say things. So I had a lot of difficulty for that period of time. And also, since it happened on the left side of my brain, on the opposite side from arm to leg, I had ⁓ difficulty with my mobility. And also with my memory, my memory was affected.
⁓ about a percentage amount. it was very hard ⁓ my first year. It was very difficult.
Bill Gasiamis (17:59)
I
was 37 when I had mine and you were 35.
Jonathan Arevalo (18:04)
35.
Bill Gasiamis (18:07)
Yeah, very young, very young age and then a lot of challenges. So who was supporting you when you were at hospital? Was it your girlfriend at the time and other family members or nobody able to come because of the lockdowns?
Jonathan Arevalo (18:21)
Yes. So because of the lockdowns and all that, the only person that I had the permission ⁓ for that support was my sister, my older sister. So she ⁓ would be the only one that just by phone, so not in person, because ⁓ my family lived two hours away from the city. And since they live very far away, ⁓
⁓ My sister was the only one that had communication with the doctors, with the nurses and any specialist when it came to my case.
Bill Gasiamis (19:02)
Wow.
After surgery, after you woke up from hospital, the first seven days, you said the better week you’re in ⁓ that situation.
Jonathan Arevalo (19:17)
Yes, for a week. ⁓ so they ended up not doing anything. I’m not too sure why. And they let me go home.
Bill Gasiamis (19:29)
Wow, so they had drained the blood already out of your head and then just sent you home
Jonathan Arevalo (19:35)
They sent me home on a wheelchair. So what happened was that I ended up getting picked up by my sister and I didn’t go back to where I was currently living in the city. Instead, I went back to the countryside with my parents who ended up becoming my caregivers.
Bill Gasiamis (19:59)
So you had a, they sent you home in a wheelchair. Did that mean you couldn’t walk when you were sent home?
Jonathan Arevalo (20:08)
I could walk a bit, but not too well.
Bill Gasiamis (20:12)
So there was no rehabilitation option, you didn’t get rehabilitated, they didn’t give you occupational therapy or anything?
Jonathan Arevalo (20:19)
They did that at home as well. Because of COVID, I ended up receiving rehabilitation at home. ⁓ When it came to walking, speaking, understanding, cognitive, and social worker, and nutritionist, all of those types of therapists, ⁓ they had to dress up in a suit as if…
As if they’re going to see someone who’s with a virus or something. So it was like watching a movie.
Bill Gasiamis (20:55)
Wow
Yeah, pretty crazy times. So you did get rehabilitation. They did ⁓ support you with therapy for speech and all that kind of stuff. ⁓ How long did all of those therapies last? Was it?
Jonathan Arevalo (21:16)
Yes, that lasted for seven months.
Bill Gasiamis (21:20)
Wow man, all at home.
Jonathan Arevalo (21:23)
all at home, ⁓ in person, and also virtually the way we’re doing right now.
Bill Gasiamis (21:29)
Yeah, was it virtually for speech therapy?
Jonathan Arevalo (21:34)
Yes, virtually it lasted longer than seven months for speech therapy. It lasted a year.
Bill Gasiamis (21:40)
Wow, Yeah, that that’s kind of cool that even though they were going through a really difficult time in Canada, with lockdowns with all the stuff that ⁓ happened because of COVID that you still got access to all of the necessary tools to help you overcome what it was that you went home with.
Jonathan Arevalo (22:02)
Yes, yes, I’m very thankful. I’m very thankful that I received the support that I needed and also the support of my caregivers, my parents and my older sister, because mainly my older sister was the one that was on top of everything. So that way I may receive everything the moment that I got released from the hospital.
she ended up getting everything that I needed, so that way I get that support automatically right away, over the time, yeah.
Bill Gasiamis (22:40)
Wow, that’s excellent. So, however, now you’re living in different circumstances under lockdown, very difficult to access all these things, like things are seriously have gone wrong for you, know, quote unquote, in your health journey, okay? What is it like dealing with the emotional side of that?
Emotional Challenges Post-StrokeJonathan Arevalo (23:05)
Very difficult. I was very angry. I was very frustrated. I was very upset. I was confused. Those are the different emotions that I felt. And I believe that many other stroke survivors would feel the same way. Because I find it that whenever something has been taken away from you, then it hurts a lot.
And it hurts you a lot because it’s kind of like not being yourself anymore. So you have something that’s been taken away from you. And so I did lose quite a lot. I lost my job. I lost the ability to drive. So I had to sell my car. And I also ⁓ lost that relationship that I was in.
that relationship ended. And I also wasn’t earning any money as well. So the only caregivers were my parents. had to live with them again. And for the past four years of recovery, which I’m still in that recovery stage of stroke, but I’ve improved a lot though.
I’ve improved a lot and which I’m very, very thankful. And that just goes based on just having faith. And that’s where I started to change my life. I started to change my life the moment I started to change my mindset, the way I think. And because the moment I started to change the way I think, it was the moment that I was just much more grateful for even though I lost everything.
I was simply grateful to be alive. And that was much, much more meaningful than everything that I had.
Bill Gasiamis (25:08)
than being grateful for a car, for example.
Jonathan Arevalo (25:11)
Being much grateful for having the second opportunity to live when possibly I wouldn’t be here telling my story.
Bill Gasiamis (25:20)
Yeah, I totally get that. I went through a similar experience, know, gratitude. Even if you’re not able to come up with something that’s as meaningful as I’m grateful to be alive, like maybe you’re grateful because, I don’t know, there’s a roof over your head or, I don’t know, somebody said something nice to you or whatever. Like you can be grateful about many things, but-
being grateful to be alive. Well, that was an easy one for me as well. I totally get it. That’s what I went through. And I had another opportunity to make things right, to support ⁓ myself in a different way, to think in a different way, have it, to try different things and experience things that I’d never experienced before. What, what was the thing that kind of made you feel grateful to be alive? I know that
Do you know what I mean? There’s a layer beneath that. is, I’m alive, okay, but what does that mean that you’re grateful to be alive? I get it, but there’s more to that.
Jonathan Arevalo (26:33)
Yes, of course. Yes. I’m grateful for being alive because I have a second opportunity to change my life to something even better when it comes to helping others, when it comes to being a difference from our old self. Sometimes we don’t get a second opportunity to reflect, but I had…
four years, and it’s going to be almost five years, of the opportunity to reflect, of being thankful for, as you said, a place to live, for having my parents, for having my sister, and for having other loved ones that were there praying for me so that way I may live and not die. And at the same time,
⁓ Just being able to walk, to see, to speak, to understand. I was able to regain all of that that was lost. those were the reasons why I was grateful for.
Bill Gasiamis (27:48)
Yeah, your, ⁓ so your mindset and who you were and how you acted and how you behaved. Like, are you a very different person than the person beforehand? Like, what were the issues with your mindset? What were the issues with the way that you turned up in the world that you needed to tweak to be a better version of yourself back then? Now, I say that because many stroke survivors will say,
I want to go back to how things were before stroke. And I’m like, I didn’t want to do that. Like, that’s not a good place to go. You’re smiling. So I’m imagining that you think a similar way.
Jonathan Arevalo (28:30)
Yes, agree with you, Bill. I find it that sometimes we don’t change our old habits, let’s say. Sometimes we carry habits or cycles in our life that we think it’s good, but in reality, it’s not something good that actually ⁓ represents us.
or does good for others or even for ourselves. So myself, I can say that I had everything that I wanted and I had the opportunity to do pretty much everything that I wanted. But at the same time, I wasn’t completely happy. And at the same time, we carry certain bad habits because we think according to society, where society will
will accept you based on the things and the patterns that you follow society. When it comes to doing certain bad habits that you think that’s good, but in reality, it’s not really good because you’re actually hurting and damaging who? Yourself. Which is something internally, both mentally, physically, and emotionally. But over time,
When you start to reflect on your old habits that weren’t completely fulfilling or bringing that happiness or that peace or that joy, then in reality, it’s nothing good. It’s only for the moment. And sometimes we keep on rushing and doing things for the moment to get that pleasure. But that pleasure only lasts for a moment.
So I had to change. And this recovery over these almost five years was a recovery not to just change myself, but to change the way I think, the way I speak and the way I act, because it’s a full connection. And that full connection is the reason why now what I’m currently doing is helping other people, other stroke survivors and other people with disability and also mental health, because we find it that each day
The world is getting worse, not better, but worse. Why? Because we live in a broken world. And the fact that we live in a broken world is a reason why there’s many, many men and women that are looking for pleasure, but for the moment. And that’s something that I had to learn for myself the hard way. Even though I wasn’t in drugs, even though I wasn’t an alcoholic,
even though I wasn’t doing harm to people, but I would still have bad vices or certain things that still didn’t make me happy. So that’s the main reason why.
Overcoming Bad Habits and Health ChallengesBill Gasiamis (31:38)
Yeah, it’s exactly my experience as well. Like I had some bad vices that were not ideal. They seemed minor, but the behavior, the habit behind it was not minor. It was major because it was there for many, many years. And if it continued to go on, wouldn’t be helping in a positive way. It wouldn’t be achieving a positive outcome. will be achieving something that my head
thought was a good idea at the time, but not really something that is meaningful, purposeful, useful in life. Smoking was one of those things I used to smoke. And people, often I had a friend of mine who would say that that thing will kill you if you keep doing it. And I was like, yeah, don’t worry about it. That’s a problem for Bill in the future. It’s not a problem for Bill today. However, Bill of the future had a bloody brain and…
a brain AVM bleed in his head. that became a 37. Really, that became a problem for Bill. Now. And I was smoking from about the age of 13, something like that, on and off. And my friend was telling me that from probably the age of 17, 18, 19, 20, 21. It didn’t take a lot of years to get to 37 and then be experiencing
you know, negative impact of a health situation. And I realized that I’ve got to make some massive changes. And obviously, to me at least, it was the most obvious thing that I have to give up smoking. Also alcohol, even though I wasn’t an alcoholic, I had to stop drinking alcohol. And now I very, very rarely drink alcohol. Even 13, 14 years past the first bleed, I very rarely have an alcoholic drink.
⁓ So it’s amazing what came to my mind. I immediately knew the things that I had to change. No one had to tell me, ⁓ well, since you’re ⁓ having a stroke, since you can’t walk properly yet, since your left arm doesn’t work correctly, why don’t you think about fixing this, changing that, doing this, doing that? No one had to tell me. Inside of me, instinctively, I knew
what I was doing that was not supporting me, was not supporting my mission in life and my goal in life. And it was the easiest thing to change. ⁓ I did receive some help though. I didn’t do it alone, right? So I had a counselor, I had a coach, a life coach. ⁓ I sought out the wisdom of people that were older than me, smarter than me, know, been on the planet longer than me whatever.
And I did it together with other people, not just on my own, because change is not very easy, especially when you remove an old habit and then you have to replace it with something. Initially, replacing it with something feels a bit strange and you don’t know if it’s the right thing that you’ve replaced it with and how that’s going to look like in six months or 12 months. So that’s what I found was that in order to help me find the right things to replace the things that needed to be left behind.
I needed to seek the support of other people, counselors, coaches, et cetera. Did you have some support in that part of your recovery so that you can kind of make sense of all the changes that were happening in your body, in your emotions and in your life?
Jonathan Arevalo (35:15)
Yes. So I ended up joining a nonprofit organization here in Canada called March of Dimes. And March of Dimes provides support for stroke survivors, people with disability, and they have peer support. And it’s a form of counseling with other stroke survivors.
And they do this within all of Canada. And also through Heart and Stroke as well, which is another nonprofit organization, Heart and Stroke. So both of them, would do this virtually where I would seek support to talk to someone based on what I’m going through, my thoughts, my emotions, and also telling my story.
And from that moment, I said to myself, I want to do the same. I want to give back to the community and to other survivors. So I ended up becoming a volunteer. And for the past three years, I’ve been a volunteer at ⁓ March of Dimes and also Heart and Stroke, where I ended up becoming an advocate.
for both nonprofit organizations. And you can also see me on their website on both of them where it tells my story, but also the fact that I volunteer helping out people from the ages of 20 to the ages of 80 years old in two languages now. So I do it in English and Spanish. And it feels really, really good. It really does.
Bill Gasiamis (37:09)
Yeah, we have very similar stories and journeys. So I went and connected with the Stroke Foundation here in Australia and then provided became an advocate so that we can raise awareness about stroke and then started doing some speaking on their behalf at different organizations. And and like you said, like it gives you a lot of purpose and meaning. It makes what happened to you worthwhile.
You know, it’s a very important part of, well, why did this happen to me? I don’t know. You could come up with a lot of negative reasons why something bad happened to you, but what am I going to do about this? And how can I transform this in a way that can help other people? Well, that is a better question to ask. And then volunteering is the best way to do that. I volunteered probably from 2013 through to about 2019.
Finding Purpose Through Volunteering
For about six years I volunteered. And at the same time I was running the podcast, I started the podcast in 2015. ⁓ And it was just ⁓ meeting other people who had understood me as well in those communities. That was fantastic. Being able to connect with people like that and feeling like, you know, this person really understands what happened to me because it happened to them in a different way, but they have a similar kind of recovery. And…
we are aligned in our mission to support others and make a difference and not to make it just about us because that’s a really difficult thing to ⁓ do is you you become anxious and depressed when you just make it about yourself so making it about other people’s stops that thinking pattern ⁓ and I just love the journey that you’re on because you’re very early on in the journey and I can see it’s going to continue ⁓ to be that kind of
meaning making journey. I found that I said that I discovered my purpose after the stroke. Now you would have thought that somebody who was married had two children, had plenty of purpose in their life, plenty of meaning. Why do I exist for my children? To support them, to teach them, to make them great men, to ⁓ give them the opportunities in the world, in the community, except
They move out of home eventually, and then they become independent. And then your purpose and meaning has to shift. It cannot just be about them. You can include them in your purpose and meaning because you love them, they’re your children, et cetera, in my case. But, you know, they don’t need me now to be the guy that shows them the way of the world and…
educate them and prepare them and all that kind of stuff. They are doing it on their own. When they do need me, they come for five minutes or 10 minutes. We have a conversation and they’re done. So it’s important to shift that energy that I had as a parent to other people who need support in the early days of their experience when they have a negative health experience so that we can help guide them through
that adversity and overcome and then maybe grow and be a better version of themselves in a few years down the track.
Jonathan Arevalo (40:41)
Yes, I think that it’s important to be a good example, a good leader, whether it’s at home or everywhere we go. We always need to be a good testimony. And the way I’ve learned that is also through my dad, which he taught me at a young age to be
to be a man of righteousness, where he shows a good example through his good actions, but not only through words, but through actions, right? Because sometimes we may speak and say a lot of things, but we don’t live it. But when you live it, it makes a huge difference. And whenever we show those examples, whether it’s…
to anyone, any family members, strangers, or anything like that. We need to be like that everywhere we go. And that’s something that I’ve learned a lot, that we need to be a good example to anyone.
Bill Gasiamis (41:47)
Yeah, I imagine that in the last five years you would have had some setbacks as well. What was the hardest challenge to overcome, do you think, for you? Was it physically or was it emotionally?
Jonathan Arevalo (41:59)
⁓ I think it was more emotionally than physically. But it’s something that I was able to work on because even myself, ended up seeking support. And not only through these nonprofit organizations, but also within the church. So I ended up going to church and
I had one of the pastors being my mentor ⁓ for a year and a half, and he ended up helping me out a lot. And it was a big amount of support that I received also from my dad and my mom and my sister. So I always had ⁓ a close family support. Yeah.
Bill Gasiamis (42:54)
Yeah, the church is very common in people’s recovery. You hear a lot about people reconnecting with their church or even if they were still connected with their church, getting supported and having people turn up, ⁓ provide food, provide counseling, provide encouragement, all sorts of things. ⁓ And it sounds like it’s a fantastic community. And then you also hear from people who had ⁓ non-church type of.
communities who come forward, support them and give them ⁓ the things that they need to kind of get them settled and in some kind of routine where they can continue recovery in their own way. ⁓ But there would have also been hard times, right? Where, because most people, and on my podcast, we talk about all the amazing things that stroke survivors do and they overcome, et cetera, but there’s also a…
really, really hard times. I went through what I would call rock bottom moments, found myself in the abyss. Did you find yourself there at all? Had you experienced kind of that really down negative part of stroke ⁓ in your mental state and your emotional state as well?
Jonathan Arevalo (44:09)
Yes, ⁓ within the first year. So the first year was everything like I mentioned earlier about feeling angry, frustrated, ⁓ sad and all that. The first year was the hardest part of ⁓ just not knowing what to do. And the only support was ⁓ through my parents that
helped me a lot to kind of take away those negative thoughts. And also getting into the church where I had support with the pastor. And then myself just changing my mindset where I had to start looking more into, more to God because I find it that without God we’re nothing.
And based on my faith, that’s what gave me the strength, the encouragement, and the joy that was taken away the moment I had my stroke. So my faith in God was what gave me the strength and gave me the encouragement to move on forward.
The Role of Faith in RecoveryBill Gasiamis (45:31)
Let’s talk about faith for a moment because people may not believe in God. Some people may not believe in God, a God, their God, whatever. faith on its own as a experience is something that we, if we practice, ⁓ is really supportive of recovery. So faith in ourselves, faith in the medical system, faith in any situation where
We have to put our kind of our life in the hands of other people. That’s what we’re practicing for people who don’t have faith in God or who don’t have a God or don’t believe in God. You still have to practice faith and you practice faith every single day. ⁓ I wanna go and receive one of my medications. You have to have faith in the medication that is going to work for you and it’s going to actually do the job.
that it’s meant to do. Keep your blood pressure down, for example. I’m on blood pressure medication. ⁓ When I drive my car, I have to have faith that the other person is gonna stay on their side of the road and they’re not gonna come on my side of the road. And you know, 99.999 times out of 100, that’s exactly what happens. know, ⁓ when I have, when I’m driving the car, once again, I have to have faith that the lights that I stop at are going to, in fact,
when it’s red on my side, it’s going to be green on the other side. And at some point it’s going to switch and it’s going to go green on my side and it will definitely go red on the other side so that we don’t collide. You know, there’s faith. We practice faith all the time throughout our day, throughout our whole life without even really knowing it and without needing to practice faith in a religious way. ⁓ And that’s what I’ve kind of got out of my whole, my whole journey is
I didn’t find God so much in that I see God differently these days. I kind of believe that God is me. I am God, God is within me. So when I request a solution, if I use the word God in the sentence, God guide me to find the answer to this difficult question, what I’m actually doing is I’m having an internal conversation with myself.
And I’m asking myself, my unconscious self to guide me to find the answer in this particular way. And that way I can combine God, the non-religious version of God, we’ll call it spirit or our creator or whatever you want to call it. And I can embody that and then make it part of me. And then in the right context, I can access
the wisdom of God, the creator, nature, whoever, and I can be guided instinctively to follow my gut to an answer. And then if I go down a particular path that was not that way, and I find the wrong path, I can redirect, go back in, redirect and go again. So I became
I suppose more, maybe the word is spiritual, it’s probably not the right word, but it’s how I kind of practice my, what you might call connection to God and faith. That’s how I practice it. How does that sound to you?
Jonathan Arevalo (49:08)
Yes, for me, it’s having faith is believing without seeing. And whenever you build a relationship with God is the moment that you start to learn who God is. And when you read God’s Word, God’s Word teaches us about His promises. His promises that He has for each one of His children, which God created, heaven and earth and everything that we see. And the fact that we breathe and
and all that, that’s God who does that. there was this, the other day I was reading and it’s ⁓ in the Bible in the book of Isaiah, who’s a prophet. And it was based on the story of a king and the king is his name is Hezekiah. And Hezekiah had an illness, but not only that, it said, actually, can I read it in?
in a second. So it says in his book that
It says in Isaiah 38, it says, In those days, Hezekiah became ill and was at the point of death. The prophet Isaiah, son of Amoz, went to him and said, What is what the Lord says? Put your house in order, because you are going to die. You will not recover. Hezekiah turned his face to the wall and prayed to the Lord.
Remember, Lord, how I have walked before you faithfully and with wholehearted devotion and have done what is good in your eyes. And Hezekiah wept bitterly. Then the word of the Lord came to Isaiah. Go and tell Hezekiah, this is what the Lord, the God of your father, David, says. I have heard your prayer and seen your tears.
I will add 15 years to your life and I will deliver you and this city from the hand of the king of Azariah. I will defend this city. This is the Lord’s sign to you that the Lord will do what he has promised.” So when I read that, I said, wow, how amazing God is that not only does he give promises to either
kings and all of that during 2000 years ago in history and how God is still faithful to each one of us. Why? Because each one of us have a purpose and because God has created us with purpose is the reason why his love and mercy is so great. And that’s why I’m thankful for it I know that God is faithful and because his faithfulness
He’s given me a second opportunity to live.
Bill Gasiamis (52:16)
Yeah. So you you take your Bible everywhere now.
Jonathan Arevalo (52:21)
I take his word everywhere in my heart and I find it that his word is real and is truthful because without God’s word, there’s no life.
Bill Gasiamis (52:28)
Yeah.
So what about before stroke? Were you somebody that knew the scripture? Were you somebody that ⁓ had that type of connection to the word?
Jonathan Arevalo (52:47)
I didn’t have that connection as much as I have it now.
Bill Gasiamis (52:51)
Yeah. That’s cool.
Jonathan Arevalo (52:53)
And that goes based on like we spoke earlier about having a relationship. It’s not really following a religion. It’s knowing that there’s something greater than us. That’s the difference.
Bill Gasiamis (53:05)
Yeah.
I agree with that.
Jonathan Arevalo (53:09)
And when we know that there’s something greater than us, then we can see that things change. But only things change only if we change ourselves in the inside. Because remember, this world that we live in, as I said earlier, we live in a broken world, right? A broken world where we find a lot of chaos and a lot of things going on. But without that love, without that peace, without that joy, that can only come.
through the creator, which is God. And that’s the only way that you can actually be molded to the righteous man of who God has created in us. But we just need to know how to find that. And that way is through His word. His word teaches us that. And the moment that we apply that to our lives, day by day, the same way like with our health, our sickness, our weakness, our insecurities,
How can we change that? We can only change it the moment that we apply it into our lives, little by little. And through that is the moment that we can see transformation and a step of moving forward and also breakthrough. Breakthrough is only done through changing our old selves. Because our old self is very hard to break, because we still carry that.
Understanding Suffering and Connection to GodBill Gasiamis (54:35)
Yeah, I agree with a lot of what you’re saying. Some people will be listening and going, well, if God is so good, why did God do this to me? You know, some people are far more injured because of stroke than you or I, even though your injuries and mine are all valid. There’s people who won’t walk again. There’s people who lose their memory, who can’t remember anymore. There’s people who cannot get their speech back. There’s people who’s…
left arm, right leg won’t work again, then there’s people who will pass away. And then some of those people find that they’ve been harshly treated by God, by their maker, their creator. How do you talk to people like that to make them feel like it’s not personal? God, your creator, your maker has not gone after you and ⁓ is not punishing you.
Like what do you say to people who lose connection with spirit, with God, with their creator?
Jonathan Arevalo (55:40)
Yeah, well, what I can say is that that God is so merciful, right? And because God is so merciful and through His love, we see in God’s Word that He died for us in the cross for our sins and is due to sin that we go through all these challenges. And that’s the connection through a broken world that we live in.
is because everything comes from sin. And sometimes it’s hard to say, why is this happening to me? Or why am I not getting better? Well, everything goes back to sin. And because until we kind of, until we accept Jesus Christ, but not only accept Jesus Christ, but at the same time, God allows certain things
that we have to go through. We have to go through certain challenges or obstacles, right? But it’s really hard to say. I find it. Maybe to answer that question.
Bill Gasiamis (56:47)
Yeah.
I actually don’t mind the word sin when you use the word sin, because I’ve recently discovered ⁓ some people’s meaning of the word sin is to take that an incorrect aim to aim in the wrong direction. And I really relate to that. So when I sin, I don’t kind of see it as a, ⁓ you good, me bad. Like, do you know, don’t, I don’t sort of see that type of thing. It’s just aiming in the wrong direction. For example, previously my life was
led by my head. It was my head that was telling me this sounds like a good idea. Yeah, we should have three cars. We should have the biggest house possible. We should do all of that. My head was guiding my life, whereas now my head is supporting my heart to guide my life. That’s why the podcast exists, because the podcast is not about what my head thinks is a good idea. Because if my head thought it was a good idea, this podcast should be making
a shitload of money and it’s not making a ton of money. That’s why I request support from Patreon. That’s why I wrote a book to make a little bit of money so that I can ⁓ cover the costs of recording, editing, uploading, hosting a podcast. Like that’s the reason why it needs to make money, but it doesn’t need to make hundreds of thousands or millions and millions of dollars. My head in the old days would be going, dude.
Don’t ever do 400 episodes of stroke survivors podcast. I’m not interested in that. And I, and I would be going, okay, what do I need to do? And my head would be going, you need to 24 hours a day, seven days a week and make as much money as you can. So you can have all the things that we’re told by the marketing companies that you need to have. I see that as a sin. Do you understand? That is the wrong aim. I’ve taken aim.
dude and I’m putting all my energy into the wrong things. Whereas now I’ve taken aim and adjusted and now I think I’m aiming in the right direction. It’s about purpose, meaning, connecting with other people, helping other people, supporting other people. I’m no longer sinning in that particular way. That’s the literal description of the word sin. So it’s really important that
I learned that because if I didn’t learn that I would be taking when I hear the word sin as a me bad, everyone else good. And that’s definitely not what it is. And that’s what I think the, the bleeding in my brain helped me adjust the aim, redirect where I was heading in my life, who was important, why they were important to me. ⁓ and, and my community is not a church.
but I’m creating my own community on this podcast, know, 400 interviews, people who reach out from you all around the world. It’s the same kind of community, giving community as a church community is. We support each other, we help each other, we give people information, we connect other people with ⁓ doctors and conditions and solutions. So it’s like, yeah, that’s what I was lacking. I was lacking community.
Jonathan Arevalo (1:00:01)
community.
Bill Gasiamis (1:00:02)
I was lacking people who understood me and who were similarly aligned to me. You know, I was connecting with people who were sinning in their own way because their direction was all wrong and we were finding each other and we were making life harder for ourselves by being all in our heads and not connected to our body and our heart, right?
Jonathan Arevalo (1:00:23)
Yeah, that’s right.
Bill Gasiamis (1:00:25)
That’s kind of my religious journey without connecting it to a religion or to a religious chapter or to a church in a particular location. But I still feel like it’s a religious journey, you know?
Jonathan Arevalo (1:00:39)
Yes, like the moment that you build fellowship as we’re doing right now, we’re sharing our stories and we’re sharing our journey as stroke survivors. And through this story is what shows
which is what shows purpose and also can leave an impact to others, survivors. Because if we don’t show a difference and if we don’t help support other people, then what purpose do we have on this earth? Right? We’re here to help one another and to be different in a good way.
Building Community and FellowshipBecause every single time we’re always going to be going through different challenges. Whether it’s negative thoughts or everything that we see on TV. Because every single time that we’re looking at the news is always bad news, So all those negative thoughts are something that we are affected day by day. And the only way that we’re able to overcome those negative thoughts is by
putting ourselves surrounded in other things. Other things that can help us strengthen our mind, our body, and emotions. But that’s something that takes day by day.
Bill Gasiamis (1:02:14)
Yeah, I love it. I love your journey. I love how similar we are in our path, even though we talk about it in a slightly different way. ⁓ Leading a good example is something that was very important to me. I want to be a good example for my kids. In my book, ⁓ the dedication says to all the stroke survivors who are dealing with the aftermath of stroke.
and despite it all are seeking transformation and growth. And that’s the first part of the dedication. And the second part of the dedication says to my family, I hope that that I have set a good example. I mean, my only goal, my only goal is to set a good example, to show them when adversity comes, how you can respond. There’s a
Jonathan Arevalo (1:02:59)
Thank
Bill Gasiamis (1:03:10)
I think there’s a way to respond that’s wrong. And then there’s many ways to respond that are right. There’s a one, there’s unfortunately, you know, responding by going back to the way that you were before, think is the wrong way to respond. then finding a new path forward, taking aim and choosing the wrong direction, sinning, and then readjusting, and then going again in another direction, I believe.
like is the example that we need to set for other people just so that my kids can see in the future when they go through a tough time, they go, I think I remember one way that my dad did it that might be supportive of my recovery down the path and see, okay, this is what dad did. I don’t need to do what dad did, but this is kind of how he thought about that and how he approached that. That’s really.
what I was sitting out to achieve. And I think I’ve achieved that and I feel really good about that, you know.
Jonathan Arevalo (1:04:17)
Yeah, no, I think that’s excellent, Bill. I’m glad that you were able to create a podcast. And ⁓ thank you for this opportunity because I never thought I’d be able to share my story. And as well for the fact that your sharing was called, ⁓ that you created a book to tell about your stroke survival. And I think that that’s going to impact many, many, many other survivors.
They’re going through difficult times and I think that’s amazing.
Bill Gasiamis (1:04:52)
Yeah, thank you. A lot of people have bought it. I think there’s at least 600 copies being sold at this stage. And that’s not a lot. It’s not a million copies, but ⁓ it was never about the number. It was just about having it available just so that people can come across it if they need to and ⁓ read it and just see a different perspective of how you can approach your recovery. ⁓ You can get the book at recoveryafterstroke.com/book for anyone that’s watching and listening.
So as we kind of get to the end of this interview, tell me what’s next for you. What’s on the to-do list? What goals do you have that you want to achieve?
Future Goals and New BeginningsJonathan Arevalo (1:05:31)
Yes, well, what I’ve been able to achieve ⁓ was that I ended up getting married this year. Thank you. It wasn’t something expected because I thought maybe it’s not going to be possible to meet someone based on my condition and everything, but…
Everything changed. And so I got married on April 11th of this year. So I’m now married. And the other thing that I started this year was besides the volunteering, I also created ⁓ my own like small business when it comes to mentorship to help other people, which are people that are either stroke survivors.
People with disability and also mental health. And I created my website on that to help a lot of people. And it’s ⁓ non-profit at the moment, which is donation-based. And I’m still helping in the community. I still volunteer. And I still ⁓ help out in the church and many other places.
So those are the things that I’m still currently doing.
Bill Gasiamis (1:07:02)
Fantastic, man. So the website, we will have the links to all of the different social media and your website, et cetera, for people to follow if they want to connect with you. ⁓ The journey that you’re on, you’re calling it the 20, the project 21.
Jonathan Arevalo (1:07:28)
Yes. The reason I called it Project 21, because this journey that I’m going through is like a form of a project. And everything started in 2021. So that’s why I decided to pick something unique and different and call it Project 21.
Bill Gasiamis (1:07:51)
Yeah, fantastic, Jonathan. I really appreciate our conversation. Thank you for reaching out and joining me on the podcast. I love the work that you’re doing and will continue to do. There’s many, many years ahead of you of doing fantastic work and I look forward to keeping in touch and finding out how your journey unfolds.
Jonathan Arevalo (1:08:14)
Yes, thank you, Bill. I appreciate it.
Bill Gasiamis (1:08:17)
Well, thanks so much for listening to this episode of the Recovery After Stroke podcast. And thank you to Jonathan for sharing a story that takes a lot of courage to revisit. One thing I hope you take from this conversation is that recovery is never just physical. It’s emotional, it’s messy, it’s confusing, but it is also an opportunity to rediscover who you can become. Jonathan’s journey shows that healing doesn’t always look like we expect. And sometimes the smaller steps forward end up becoming the most
meaningful ones. If this episode helped you feel understood or gave you something to think about on your recovery path, remember to visit patreon.com/recoveryafterstroke. Some people believe their support won’t make a difference, but that’s an assumption that simply isn’t true. Every contribution helps me continue producing these episodes, keep them online and moving toward my goal of recording a thousand conversations. So no stroke survivor ever has to feel like they’re going through this alone.
And if you haven’t already, you can also order my book, The Unexpected Way That a Stroke Became the Best Thing That Happened at recoveryafterstroke.com/book. Many listeners expect it to be just my personal story, but it’s actually something much more useful. It’s the guide I wish existed when I was confused, overwhelmed, and trying to figure out how to rebuild my life after stroke. Thank you again for being here, for listening, and for supporting the work in whatever way you can. You’re not alone in this.
and I’ll see you on the next episode. Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals.
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The post Hemorrhagic Stroke Patients Recovery: Jonathan’s Remarkable Journey appeared first on Recovery After Stroke.
Basilar Artery Stroke: The Warning Signs Daniel Didn’t See ComingWhen people think of a stroke, they often imagine the classic symptoms — facial drooping, slurred speech, or one-sided weakness. But the basilar artery, which feeds the brainstem and cerebellum, behaves differently. When it blocks, symptoms can be subtle at first, then escalate with terrifying speed.
That’s what happened to 28-year-old triathlete Daniel Coggins, who went from finishing a morning run to collapsing on the bathroom floor within minutes. His story highlights the symptoms many people miss, the dangerous delays that can happen in emergency care, and the critical signs every family needs to know.
What Is a Basilar Artery Stroke?The basilar artery is one of the most vital arteries in the brain. It supplies blood to areas responsible for coordination, balance, vision, swallowing, and consciousness.
When this artery becomes blocked — called a basilar artery occlusion — the results can be catastrophic. It’s one of the deadliest, most time-critical forms of stroke.
Common symptoms of basilar artery occlusion can include:
- Sudden dizziness or vertigo
- Severe imbalance
- Double vision or blurred vision
- Sudden headache
- Slurred speech
- Sudden collapse
- Limb shaking or full-body thrashing
- Loss of consciousness
- Difficulty swallowing
- Nausea and vomiting
Daniel experienced several of these in rapid succession — and like many young, fit people, he had no idea they pointed to one of the most serious neurological emergencies.
The Morning Everything ChangedDaniel’s day started the same way many active people begin theirs: a run with his wife. They jogged four miles, felt good, and returned home.
Then everything shifted.
After his shower, Daniel suddenly felt the room spin violently. He sat down on the toilet, trying to regain balance — but within moments, his body began thrashing uncontrollably. All four limbs were seizing, yet he remained conscious enough to call his wife for help.
Within minutes:
- He could no longer hold himself upright.
- He lost all strength.
- His speech began to deteriorate.
- His body became a “dead weight.”
These symptoms are classic for vertebrobasilar stroke, but because they can mimic dehydration, vertigo, heat stroke, or even a seizure, many survivors — and medical staff — don’t immediately recognise what’s happening.
The Danger of MisdiagnosisEven when paramedics arrived, they suspected dehydration or heat exhaustion.
At the hospital, Daniel sat in the waiting room — actively deteriorating — because his symptoms didn’t fit the stereotypical stroke picture.
This is far more common than people realise.
Basilar artery strokes can be missed because:
- They often don’t involve one-sided weakness.
- They may begin with dizziness, which is easy to dismiss.
- Motor activity (like thrashing) can look like a seizure.
- Young, healthy people are often assumed to be “low risk.”
But as Daniel’s story shows, healthy, athletic people can and do experience severe strokes.
When the Stroke Was Finally IdentifiedOnce he was finally assessed, everything changed.
Scans revealed a large clot in the basilar artery. Without immediate intervention, this type of stroke can lead to brainstem compression, coma, or death.
Doctors acted fast:
- They performed an emergency clot retrieval.
- Hours later, they noticed severe swelling in his brain.
- A nurse practitioner pushed for an earlier scan — a decision that saved Daniel’s life.
- He was rushed for an emergency craniotomy, removing part of his skull to relieve pressure.
The entire left cerebellum had been damaged beyond recovery.
Daniel was placed in intensive care for two weeks, and his memory of the early days disappears almost entirely, a typical experience after severe cerebellar injury.
Basilar Artery Occlusion Symptoms: Why They’re Often MisunderstoodDaniel’s case highlights a critical problem:
Many people don’t know the early signs of a vertebrobasilar stroke.
Typical early symptoms include:
1. Sudden vertigo or dizzinessA major red flag, especially when paired with nausea or imbalance.
2. Loss of coordinationBecause the cerebellum is involved, clumsiness, staggering, or sudden unsteadiness often appear early.
3. Irregular limb movementsThrashing, shaking, or seizure-like activity is more common than most realise.
4. Loss of strength or collapseThis can happen without warning.
5. Sudden slurred speechEven without facial droop.
6. Difficulty staying conscious or alertChanges in awareness should be treated as an emergency.
If someone experiences even one of these symptoms suddenly, especially after exertion or illness, it’s time to call emergency services immediately.
Life After a Basilar Artery StrokeDaniel entered rehab with significant deficits:
- He couldn’t swallow.
- He couldn’t walk or stand.
- His speech was severely slurred.
- His left hand and arm lost fine motor function.
- His emotions were hard to regulate due to cerebellar damage.
Yet he kept going.
Months later, he returned to hiking — even completing a 2,000-ft elevation trail. He completed a triathlon relay, swimming the opening segment. He returned to work and leadership roles within his community.
The cerebellum’s plasticity is remarkable, and Daniel is living proof of how far survivors can come — even when early scans look devastating.
Why Awareness MattersBasilar artery strokes are rare but extremely dangerous.
Early recognition is everything.
Daniel’s story is more than a medical case — it’s a reminder that:
- Not all strokes look the same.
- Young, fit people are not immune.
- Dizziness + collapse is a stroke until proven otherwise.
- Advocacy from nurses, partners, and family saves lives.
- Recovery is possible, even after severe cerebellar damage.
And for anyone experiencing the uncertainty and fear of early recovery: your story isn’t over.
“Basilar artery strokes don’t always look like strokes. But when they’re missed, the consequences can be devastating.”
Daniel’s experience shows why early symptoms like dizziness, collapse, or limb thrashing must be taken seriously. Every survivor who learns the signs helps protect someone else.
And every story shared helps another survivor feel less alone.
Disclaimer (Footer Required)This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
From Collapse to Craniotomy: Daniel Coggins’ Basilar Artery Stroke StoryDaniel’s basilar artery stroke changed everything, yet what he discovered about faith, healing, and resilience may surprise you.
Support The Recovery After Stroke Podcast on Patreon
Highlights:
00:00 Introduction and Background
04:05 The Day of the Basilar Artery Stroke
10:31 Emergency Response and Hospitalization
14:18 The Impact of the Stroke
22:08 Learning to Accept Help
27:40 Personal Growth and Reflection
38:02 Finding Peace Amidst Chaos
43:12 Navigating Emotional Challenges Post-Stroke
51:31 Finding Purpose in Pain
56:40 Heightened Emotional Sensitivity as a Gift
01:02:01 Sharing Stories and Raising Awareness
01:12:53 Life After Stroke: Embracing New Beginnings
01:15:52 Advice for Stroke Survivors
01:20:03 The Dichotomy of Support and Loneliness
01:25:36 Celebrating Progress and Achievements
Transcript:
Introduction and BackgroundBill Gasiamis (00:00)
Hey, it’s Bill. Before we dive in, I wanna say a heartfelt thank you to everyone who supports the show on Patreon. After more than 10 years of producing, editing, recording, your support genuinely helps me keep this going for the survivors who need hope the most. A huge thanks to everyone leaving comments on YouTube, listening on Spotify or Apple, and to those of you who picked up my book, The Unexpected Way That a Stroke Became the Best Thing That Happened. Every review, every share.
every message it all helps more survivors discover this podcast. Today’s episode is a powerful one. Daniel Coggins was 28 feet healthy and fresh off a morning run when the room suddenly spun. His limbs began thrashing and his body dropped. What followed was a basilar artery stroke. One of the most catastrophic types there is. His wife, his faith and early decision from a nurse practitioner
quite literally saved his life. If you’ve ever had symptoms that no one took seriously or felt like your stroke didn’t look like a stroke, this episode will really speak to you. Let’s get into it. Daniel Coggins, welcome to the podcast.
Daniel Coggins (01:13)
Thanks so much, Bill. It’s great to be with you.
Bill Gasiamis (01:15)
What
was a normal day like for you before stroke?
Daniel Coggins (01:19)
Yeah, so before I had my stroke, I had my stroke in July of 2023 and I was 28 years old at the time. And before my stroke, I was a pretty active individual. My wife and I, we enjoyed kind of long distance fitness activities. So we would, we had done a couple triathlons about three to four months before my stroke. had done half marathon running. ⁓
Yes, we really enjoyed fitness activities. We were big hikers. ⁓ These are all kind of free time activities. And then, you know, I had a job, so I worked prior to the stroke. But yeah, average day was, you know, somewhat active for the most part, at least on a weekly basis. And those were some of the activities that we did.
Bill Gasiamis (02:12)
Sounds like that was a bit of the passion, you guys walking triathlons, climbing probably ⁓ all sorts of things by the sound of it.
Daniel Coggins (02:21)
But yeah, we’ve always enjoyed those. We enjoy going to the national parks and hiking trips. That’s generally how we kind of fashion and organize vacations that we’ve taken over the years. ⁓ So that’s always been one of our favorite things to do.
Bill Gasiamis (02:37)
What did you believe about your health back then?
Daniel Coggins (02:40)
You know, if you’d asked me, I would have thought I’m pretty healthy, 28 years old. You know, I wouldn’t say I was like a health nut, if you will, but I was healthy for all intents and purposes and felt like I was doing the right things, you know, eating pretty right, pretty right. And exercise, taking care of myself the best that I could. So yeah, I would have said that I felt like my health was good.
Bill Gasiamis (03:06)
Yeah. Were there any signs that there was kind of anything wrong? You know, some people I’ve got this, I haven’t dealt with, or, uh, I have to, should go to the doctor for that, or I haven’t been to the doctor for that. Was it anything like that on
Daniel Coggins (03:21)
No, for me, for me, there was, there was just about, this was about as freak of a event that I think you could, you could have to an extent. ⁓ now very, very perhaps unrelated. I did have migraines, but those were seldom, right? Those were not debilitating. They were often, I would have, ⁓ migraines every couple months. You know, they’d kind of make me have to rest, lay down. ⁓
get out of the light for a little bit, but then pretty quickly I would be able to get right on past it. And it was not something that was recurring on a super regular basis for me.
Bill Gasiamis (04:02)
Hmm.
Daniel Coggins (04:03)
But yeah, that pretty out of blue.
The Day of the Basilar Artery StrokeBill Gasiamis (04:05)
What was the first sign that something wasn’t right?
Daniel Coggins (04:08)
Yeah. So I’ll kind of walk you through the story. I actually have a really good memory of that first day. but, uh, so my wife and I, we, it was a July morning. So where I live here in North Carolina and the U S it’s, you know, hot and humid that time of year. And, um, and we’d been out on a job that morning. We’d gone and ran like four miles before work together. And that was pretty usual. That was standard for us. You know, that was an average.
good jog, good exercise, but nothing abnormal. So we did that run, that felt good. Got back to the house and I was preparing to leave for work. So I had showered ⁓ and then I’d gotten out of the shower, gotten dressed and I was about to brush my teeth, eat some breakfast and hit the road. And my wife had just gotten in the shower. And I’m in the bathroom.
about to brush my teeth and then just out of nowhere, the stroke hits and it was a feeling unlike anything I’d ever felt. You know, I had to sit down on the toilet just to kind of gather myself. The room was spinning uncontrollably. I had no idea what was going on. After a minute or so, then all four of my limbs started uncontrollably shaking and seizing up.
By this point, I was still able to communicate. I was kind of like, my wife is in the same bathroom taking a shower. I, Hey, you know, call out to her, have her get out. She’s dripping wet. She comes over and tries to kind of, um, just see what’s going on. And all four limbs are like thrashing about uncontrollably, but I’m still able to talk and communicate. And then after that occurred, then.
I lost, I lost just about all, ⁓ all strength in my body. So then I kind of slumped to the floor, my wife trying to make sure that I was in a better position. If I began seizing up again, she pulls me out of the bathroom because I can’t help myself at all at this point. And she drags me into the bedroom. She’s wanting to get me up onto the bed, but I’m too heavy and too unable to help for her to do that. So she pulls me into the, into the bedroom.
and I’m laying there and she’s obviously very concerned. ⁓ and then paramedics come out at first, they think it’s just really severe heat stroke or dehydration. ⁓ but it was clearly not that, ⁓ but, yeah, was, it was quite, quite jarring, quite, quite jarring several minutes. ⁓
and honestly crazy that I can still even like recollect and remember some of those first moments.
Bill Gasiamis (07:13)
What went through your mind as things began to escalate?
Daniel Coggins (07:16)
You know, I didn’t even have that many thoughts, honestly, in the moment, because it was just, I was starting to lose my mind. But I think I knew it was very serious. think I knew, I don’t know what this is or what’s happening, but this is clearly not just like a, you know, I feel a little faint or I’m a little dehydrated. I need some fluids. I need some electrolytes, that kind of thing.
I think I could tell pretty quickly something more is going on here for me.
Bill Gasiamis (07:49)
Often when I speak to stroke survivors who have strange things happen to them will tell somebody about it their partner or whoever’s nearby and the person will go ⁓ Stop playing around stop messing about Why are you doing that for? Your wife was she at all suspicious at the beginning did she think maybe you’re just playing a trick on her or did she just completely move into? support a help mode
Daniel Coggins (08:20)
No, she pretty quickly moved right into the kind of the help mode. I think she heard the tone of my voice when I was calling out for help. And I think she just knew like, he’s not messing around. Like this is clearly something pretty serious. And then when my leg started seizing up uncontrollably, then by that point she definitely was, hey, something’s happening, something’s going on.
Bill Gasiamis (08:47)
dragging you from your arms, from your legs, how far does she have to drag you to get you somewhere out of the bathroom?
Daniel Coggins (08:54)
Yeah, to get out of the bathroom, she dragged me, not, she got as far as she could. Um, we have a pretty small house. like it was maybe 10, 15 feet max. Um, but that was about as far as she could do to get me out since I was unable to do anything. And then even the paramedics, when they come up, they came, they were even like, Hey, can you help? They were talking to me and asking me to like help when they were trying to get me up and get me on the gurney. And, um, my wife was like,
He cannot do anything. Like he has no, he has no strength. Like he cannot help you or bear any of his own weight at this point. Like you’re going to have to fully lift him up.
Bill Gasiamis (09:36)
Well, they’re dealing with a dead weight.
Daniel Coggins (09:38)
Basically,
Bill Gasiamis (09:40)
Yeah. Is there something, are you doing the whole, this can’t be happening? What’s going on? Are you thinking any of those types of things? How do you take it when these people turn up? a dead weight and you have no ability to, ⁓ what’s the word like to support them in their requests or to provide them what they need with their request.
Daniel Coggins (10:06)
Yeah, mean, I was just, totally, my mind was just like, wow, I, I’m, something’s going very wrong and I need help quickly ⁓ because clearly I cannot do anything to like support myself or help myself right now. So yeah, I could tell something was quite severe when it would, as it was happening and as it was playing out.
Emergency Response and HospitalizationBill Gasiamis (10:31)
Mm-hmm. Are you generally a cool, and collected kind of guy?
Daniel Coggins (10:36)
Yeah, yeah, I’m generally, yeah, for sure. You know, think perhaps externally, but then, but then in my mind, I was not, but then, but then over the course of the next couple hours, as they got me to the hospital and then I was admitted and then they coded me for stroke, they then pretty quickly, then pretty quickly from there, like I just kept losing more and more memory and ability to cognitively like stay engaged.
Bill Gasiamis (10:39)
Did you remain cool, calm and collected?
Daniel Coggins (11:05)
in the situation. ⁓ So. ⁓
Bill Gasiamis (11:10)
So it started to escalate. The deficit started to kind of creep in after you were at the hospital.
Daniel Coggins (11:16)
Yeah, yeah, so I got to the hospital and this part was actually kind of crazy. So they admitted me into the emergency room waiting area. I had been taken to the hospital in the ambulance and my wife had driven actually behind us in our vehicle because they told her, hey, I think he just needs fluids. I think we just need to, ⁓ you know, give him some electrolytes and he’s going to be all good. ⁓
So they said, Hey, I think you’re going to go home in a couple hours. So you might want to drive behind us. So have a vehicle. So she did that. They got to the waiting room and they did not admit me immediately because they didn’t know what it was. And they didn’t, they didn’t think it was a stroke. So I’m going to, I’m in a wheelchair. And then a few minutes past, my wife comes in, she goes up to the desk and asks the person, Hey, where’s Daniel Coggins gone? And at that point I’ve not been admitted yet. I was sitting in the waiting room.
losing strength, losing the ability to hold myself up. was kind of slumped over in the wheelchair and I was just continuing to decline. So I sat there probably, I don’t know how long, because I kind of lost track of time at that point, but for some time I was sitting in the waiting room, not being treated or seen by a physician. But then once they got me back into a room,
very quickly, were able to code me for stroke and they found that the basilar artery had a huge clot in it and ⁓ they knew that what needed to be done to help bust up the clot and restore blood flow to the cerebellum.
Bill Gasiamis (12:59)
Do they have a, well, perhaps they didn’t at the beginning, but do they have now an understanding of what it was that caused the clot? What was the underlying cause?
Daniel Coggins (13:10)
No, so at this point we’ve done a ton of work ups with physicians and all that. We’ve done stuff with hematology, cardiology, genetics. To this point, is no, there’s no known cause of the clot. The only thing that will not be fully provable, but then may have had some sort of cause was about a week, about two weeks before the stroke, I was really sick and I was sick with the COVID.
like illness and I was kind of down and out for several days from that illness and they can’t prove, right, that that’s what it was. But that’s the only thing in the span of those several weeks leading up to the stroke that was abnormal health-wise for myself.
Bill Gasiamis (14:01)
Yeah, bit of a smoking gun, but you never really know.
Daniel Coggins (14:04)
Right, right. But yeah, they found nothing. They found nothing through all their testing over the last couple of years ⁓ to this point.
Bill Gasiamis (14:13)
Yeah. So how long did you end up spending in hospital?
The Impact of the Basilar Artery StrokeDaniel Coggins (14:18)
Yeah, so that first day, so I was there, this is July 19th of 2023. So I was admitted into the emergency room. They did emergency surgery to bust the clot. Then my memory begins to be much more hazy. Ultimately, I was in the ICU for two weeks and then I went to a step-down unit for two weeks and then I went to a…
rehab hospital for four weeks. And the journey, so all in all, that’s eight weeks, I guess. But the journey, while I was in the ICU, I was out of it for all of this, right? So I don’t recollect ⁓ what happened to me really, but obviously I had friends and family that were able to fill me in after the fact. And I had lots of different things, so.
One thing in the first, think, 24 hours that was really significant was once they busted the clot, then obviously kind of the goal there from what I understood was to control the swelling and to see what the swelling was doing in my brain. they typically, I guess, were planning to do a MRI or a CAT scan around 6 a.m.
the day after the stroke to kind of assess it and see where things were at. But the nurse practitioner that I had that day, she decided to pull forward that ⁓ MRI or CAT scan by several hours, which then, so they took me down, they did that and identified that, the swelling is pretty significant, pretty severe, and we need to create space for the swelling. We need to do craniotomy. ⁓
in order to have the space for the brain to swell so that the brain doesn’t just compress into the brainstem and then perhaps it’ll be fatal from there. So ⁓ they did that and then they had me do an emergency craniotomy where they cut away a piece of the skull back here on my left side, ⁓ which ultimately saved my life because had they not done that, I don’t think the brain…
would have had enough space to swell because it wasn’t a small stroke for me. The entire left cerebellum is now completely dead for me. ⁓ So my right cerebellum, I think, was very minimally impacted. But the left cerebellum, I guess, due to the clot, the place of the clot and whatnot, the left cerebellum lost blood flow for enough time that the left cerebellum is completely dead at this point.
Bill Gasiamis (17:10)
Dramatic.
Daniel Coggins (17:12)
Yeah. Yeah. Yeah. No, when I heard all that afterwards, it was, it was something and it was a very long, very long journey from there because then I was, I was intubated two times while in ICU. I was told that I had pneumonia at one point while I was in there. And then very, very slowly over the course of those next eight weeks and, and into the future. Very slowly, I began taking steps of progress and.
healing and improving over time.
Bill Gasiamis (17:45)
So what deficits were you dealing with when you joined rehab?
Daniel Coggins (17:49)
Yeah,
so four weeks in when I went to the rehab hospital, I couldn’t eat. So I couldn’t swallow. couldn’t, I could talk, but it was very, very slurred. I had lot of dysarthria. I could not stand. I could not walk. Sitting even was challenging. Laying was really about the only comfortable thing I guess I could do at that point. Cognitively, I was…
Impacted as well that came back the most quickly just my cognition. And my ability to think pretty well. ⁓ So that came back most quickly. ⁓ Occupationally like left or fine motor left side left sided effects. So I do a lot of things one handed now. So left side a lot of. Weakness and inability to have, you know. ⁓
to do fine motor tasks and things that require coordination and all that kind of stuff with my left side, particularly my left hand and left arm.
Bill Gasiamis (18:57)
and any sensitivity in the skin in the way that it feels.
Daniel Coggins (19:03)
No, that’s something that some other folks have asked me as well, but no, in terms of sensitivity, heat, cold, touch, I might be a little more sensitive now to heat and cold, but nothing dramatic. Sensitivity and to the touch, it’s all about the same for me.
Bill Gasiamis (19:25)
28 and now you’re dealing with all of that stuff. Your wife as well. What’s family life like at that point? How do you guys go about getting through those eight weeks? Imagine your work obviously is notified. You’re not going there anymore. Your wife is to and from work. How is she dealing with it?
Daniel Coggins (19:48)
fantastic
through this entire thing. ⁓ She didn’t work for a couple weeks. Her work was really cooperative. I was out of work, obviously, for quite a while, about nine to ten months, all in all. ⁓ But she was there throughout, and she was at the hospital for a lot of it, and she was amazing just in terms of, ⁓ you know,
coordinating and having other friends and family come in to help as well. We have a great community of friends and family around us where we live. So they were, they all showed up. I didn’t spend one night alone those, all those eight weeks. So I had somebody stay with me for all eight weeks so that I had somebody nearby and with me, which was unreal.
Bill Gasiamis (20:40)
Wow, man.
Daniel Coggins (20:46)
We really saw people show up. We have a really strong church community and they, by all means, they were there. They showed up. Being my wife, she was a trooper. mean, there was several very dark moments where it looked like I might not make it and doctors were unsure of where things were headed. Especially at one point, they thought that I may survive, but I would have brainstem impact and maybe be…
you know, live, not have a lot of ability to do much. ⁓ and so there were some really dark moments that obviously did not happen, but, ⁓ there were some moments for sure throughout where she was, you know, she was right there throughout all of it and not knowing where things were going to go. Not sure how things were going to play out. but she was steady and present and right there by my side.
Bill Gasiamis (21:45)
Amazing. Are you the type of guy that doesn’t mind accepting help or you’re fiercely independent? What’s it like to go from being totally independent, somebody who is very active, ⁓ never probably needed anyone to help them with anything and then all of a sudden you need everybody to support you. How do you cope with that ⁓ transition?
Learning to Accept HelpDaniel Coggins (22:08)
Yeah, I, ⁓ that’s actually been one of my biggest kind of things I’ve learned through this is just how I guess our independence that a lot of us have or think that we have is in a lot of ways, actually in some ways it’s a mirage and, ⁓ this situation in my life really taught me that and taught that I’m not as independent as I think I am. I’m not able to do as much as I think I am. And I am truly dependent on
people around me. ⁓ So it wasn’t easy, you know, walking through that and learning to lean on people and depend on people ⁓ for everything that most things at that point. less stuff now, but early on I was dependent on people for everything. So not easy to do that, but I think it really just taught me that, you know, I…
I do need people in my life and I do depend on others for so many different things. And I’m not as independent as I might think that I am or might like to be.
Bill Gasiamis (23:16)
Isn’t it interesting? Like that’s the whole purpose of church amongst other things. That’s the whole purpose of a football club. That’s the whole purpose of a interest group. That’s the reason why people meet up. It’s so that you can have a community of people that you have common interests with, but also you have the opportunity to say, Hey, can you help out? Or do you need some help? Can I offer some help? I imagine that being you and from your type of
background and with your ⁓ community at church, you would have been helping people all the time. You guys would have been rallying around the community whenever they needed all the time. And now it’s flipped. Now you’re in that position and you’re finding it difficult. It’s a very interesting thing to contemplate, to think about.
Daniel Coggins (24:06)
Yeah, absolutely. mean, that was something I thought about often as I was kind of starting to recover, but I was typically always in, not always, but oftentimes I was in the position of the one giving and the one helping, the one contributing. And then I was just thrust into this position unexpectedly, didn’t ask for it, didn’t seek it out.
And just all of a sudden I’m in the position where I’m in, I have to receive. And I’m the one that needs the help. I’m the one that can’t do the things and I need other people to show up and help. And ⁓ to your point, yeah, like the, really learned and saw the church for me, be the church. And, you know, it wasn’t just this like group of people. ⁓
that maybe I had something in common with or that I saw on occasion or whatever, but they truly showed up and they showed out in huge ways. And they, they gave us, they contributed to help us financially. They showed up physically with, with meals and spending the night ⁓ spiritually to help support my wife, throw out all of it and support me. And they, they labored.
you know, in prayer and fasting throughout all of it and just being there and showing up in all those various ways and more throughout the entire thing. And I really saw for me, the church be something that I’d read about, right? Or kind of thought about maybe theoretically in my mind. And I experienced it very tangibly in a very real way in that scenario at that time.
Bill Gasiamis (25:49)
one way to be experienced to church as a church goer, as somebody who attends, you know, reads perhaps scripture, perhaps, you know, puts a helping hand over somebody and reminds them of something that they learned in church or whatever. It’s one thing to participate like that. And it’s another thing to participate in. I’m not sure if the right word is passive, like, but in a passive way where
you’re still experiencing church but from a completely different perspective.
Daniel Coggins (26:25)
Yeah, yeah, for sure. mean, for us in that scenario, like, it was either if we were going to take the passive approach, then there would have been no help. And if our church had taken the passive approach, if all of those people had just said, like, hey, I can’t help here, I don’t have the time or I don’t have the resources or whatever, then we would have been left on our own. And that’s where the passivity would have just
shown up, but that’s not what happened. And I’m super thankful to God. I’m super thankful to our community that decided, you know, we’re going to put this into action. We’re going to do something. We’re going to be present. We’re going to show up and be there.
Bill Gasiamis (27:10)
I feel like the religion and churches and things like that are kind of the way you go to prepare for life in a kind of a curious philosophical way. And then life happens and then you’ve got to put those skills that you’ve learned into action. Do you feel like you ⁓ handled that well that you put what you had learned all those years into action?
Personal Growth and ReflectionDaniel Coggins (27:40)
Yeah, I really do. It was actually kind of a little uncanny. ⁓ There’s this other kind of story I have that plays into this question, but two days before my stroke, I ⁓ was out doing some yard work at my house and I was listening to a podcast. And in this podcast, it was an interview between ⁓ one of my favorite pastors.
I’m here in the States. name is Tim Keller and he had actually just passed away. And this guy was interviewing him over the previous few years. And it was this like. Tribute basically to this guy that had just passed away and I was listening to this, this podcast and then these interviews, ⁓ Tim was being asked, like, Hey, he had actually just been diagnosed a couple of years previous with terminal cancer. And he was being asked, Hey, how are you approaching this?
and kind of what are you thinking about with this cancer diagnosis? And Tim’s response that I’m listening to a couple days before my stroke, Tim is responding back to the guy and he says, you know, actually, I was actually talking to God recently and I was asking him to basically put into my life whatever might be necessary in order for me to know God more and to experience him in a more full way.
And so I’m listening to this podcast. It’s really interesting to me in the moment. And I’m just kind of like thinking on that and just kind of considering it. And then lo and behold, two days later, I get the stroke. had a super life altering thing happen to me. Yeah. So for me, ⁓ I very much, you know, I was like, ⁓ I do feel like I was in some way, and form being prepared.
throughout my life, but then even specifically in those couple days leading up to the stroke, I do feel that I was being prepared for kind of what was to come, not even knowing that it was coming. And that all of the things I had learned and experienced and practiced in my faith journey, all of those things were kind of leading up to this moment where I was gonna either, you know, stay the course and figure this out or…
kind of move on and leave God behind. And obviously, given everything I’m sharing now, my story was that I did not leave God behind and that I have to the best of my ability with His help, I’ve stayed the course in that process. But.
Bill Gasiamis (30:25)
Do feel like there was a fork in the road moment? And maybe not deep down in your heart, but do you feel like perhaps you sensed it? I mean, this could be a moment I could go one way or the other here.
Daniel Coggins (30:38)
Yeah, I mean, I don’t know that there was one Fork in the Road moment for me. I think there was lots of Fork in the Road moments ⁓ throughout. But honestly, in so many of the moments, like early, early on where I’m like, my mind’s not even there, I’m drugged up on memory, you know, killers or whatever, I don’t know what they’re called, but I’m on all these drugs that are preventing me to have memory of what happened. And…
Because so many people in my community showed up in all of those days and in all of those moments, I think once I got to a point where like I was able to cognitively decide and, you know, think through a fork, I almost don’t even know that I had much of a fork because I think I had seen and heard about through people sharing with me.
that so many people showed up in all of those earlier moments in the journey that I didn’t even feel like I really had much of a choice. It almost seemed just like obvious that like I, of course I need to keep moving forward because all of these people have been here the past 14, 25, however many days they’ve been here throughout. Yes, it is contingent upon me to decide, but like,
These people have already been there and helped me in all of the harder moments. Therefore, the moments that lie ahead while they’re not gonna be easy, I think I just have to stay the course.
Bill Gasiamis (32:16)
Yeah. It’s very often I speak to people whose faith gets tested. You know, my faith didn’t really get tested, but I did kind of contemplate the possibility that this is all random, know, stuff happens to people. And that means that it’s not in God’s hands what happens. But then I also had the whole, but if, if I, if I embody the idea that
I am God or God lives within me or through me or whatever the word is, then I act according to some of the principles that I’ve picked up through my life, through my background, my religious upbringing. Not that I was very ⁓ religious and not that I go to church often, but still there’s plenty of things that kind of ⁓ have rubbed off. It’s like, then every decision that I make from
that perspective, if I take that on board as like I am ⁓ kind of, you know, one of God’s children, creatures, whatever it is, like from there, if I do the thing that I’m meant to do, which is ⁓ survive, fight for survival, fight to learn, to overcome, to grow and all that kind of stuff, then I’ll be doing the work that I’m meant to be doing while I was on the planet. know, nobody kind of
is on the planet to turn up and then capitulate to a difficult time and then just, you know, let things go down a different path. So it’s like the whole, and my initial way of getting through was going to counseling and psychology support because I needed to talk it through. My wife was amazing. My children were teenagers, the young teenagers.
a lot to kind of wrap my head around and talk about to sort of make sense, make meaning to contemplate my mortality and all that kind of stuff. But what was really cool is I’d been going to counseling for seven years before that. My counselor was like, she was my, she was like my community elder that I never had. You know, I had my mom and my dad, but this lady, her wisdom, her level of wisdom was kind of next level. So I would go and seek out her wisdom.
actually more than be counseled by her amongst other things. And I had been, I’d been seeing her for seven years before that. And I was speaking about it just a few days ago saying like something in me said, you probably need to be doing this for many, many years, you know, from your late twenties to however long it takes, but you need to be doing this. And when I did do it, I felt this real,
kind of sense of calm, even in the chaos, even in the madness. Nobody else around me was calm, but I was. And I was able to make really good, rational ⁓ decisions around my health, well-being, who was and who wasn’t gonna support me in hospital, ⁓ which doctors I was going to be ⁓ attended by. The whole entire process, I was in control of the whole thing. And my biggest job was to…
⁓ Even when I was cognitively impaired and couldn’t make sentences, speak, et cetera, to ⁓ create a ⁓ sense for other people that everything was okay or is going to be okay ⁓ or is okay. And therefore, if I can keep them all calm and collected, because we’re from a great emotional, crazy, very caring…
very stressed out ⁓ community, family, if I can keep them all calm and collected, together we’ll all move through. I felt like I had a responsibility to them as well to make sure that I could present in a way that was ⁓ with deficits in mind. It wasn’t about pretending they weren’t there, but it was just like, still, even with all the stuff I’m going through, we’re gonna be.
calm, collected, logical, we’re gonna move through this and we’ll be okay. ⁓ I feel like those things that you do that you don’t know you’re doing that are preparing you for later in life, like church seems like that for you, like it seems, it was the thing that kind of was that really good foundational stone where you could start leaning onto and then rebuilding from.
Finding Peace Amidst Chaos And Basilar Artery StrokeDaniel Coggins (37:05)
Yeah, I
mean, think I had… So I’ve been involved in church most of my life and it’s been super essential to my life. ⁓ my faith in Jesus has been kind of the primary thing to most all of my life. ⁓ so I’ve thought about a lot of different things kind of in my head and I formed thoughts about theological things and thoughts about suffering and hardship and these kinds of things.
⁓ so I had contemplated many of those things, but this was the biggest. In the first experience in my life, where I, a lot of that really got put into practice and in a lot of things that I feel that I knew or that I would have said, yes, I agree with that. They, they weren’t just theoretical anymore, but they were real life. were practical for me. And.
And yeah, I mean, you also mentioned I really resonate with something you said, but the thing about peace that really resonates with me because in this very bizarre way, ⁓ even from like early, early on when I was in the hospital, right? As I’m starting to gain cognition of my scenario and of my situation, what’s going on. I had this overwhelming peace and. ⁓
And I guess just this acceptance of the situation and acceptance that like my life will no longer be the same. And there’s gonna be a lot of different things about my life, a lot of different challenges that I’m going to face. But I’m super thankful because from very early on, God just provided me with this acceptance of my plight, of my challenge and gave me peace that like.
It’s not always going be hard. There’s going be, you know, challenging days, challenging moments, but I just had a piece that he’s going to be with me in all of it. And he’s not going to leave me in that he’s prepared me for it and that it’s not a, I’ve not done anything wrong, you know, that made me like deserve this situation or to deserve us.
Bill Gasiamis (39:22)
that.
I love that. I love that you got that.
Daniel Coggins (39:26)
Yeah, yeah, like I just, I just had this overwhelming peace. And I found it in scripture, right? You have the phrase peace that passes understanding. And that really, that really ⁓ applies to my situation. Cause I felt that from a very early time. And my wife did too. My wife really experienced that even earlier than I did because ⁓ she was going through it and she’s like, am I going to, am I going to lose my husband?
what’s going to happen here. And there was this one moment for her day two, day three, forget exactly when it was, but early. And she just had this overwhelming peace come over her and ⁓ she just felt God, you know, guiding her and speaking to her and directing her to trust, you know, certain medical professionals and ⁓ different people that were put in our path that were helping to guide and, know,
helping to treat me and make decisions and whatnot on things that I needed to improve. And yeah, my wife had that as well. And that doesn’t mean I don’t say all that to gloss over or say that we haven’t had challenging moments because we 1,000 % have. And we still do, and I still do. Fortunately, those are farther and farther apart. The more and more I get removed from
the stroke itself. ⁓ but that doesn’t mean those things have been erased or that those don’t exist because they do. But I have had this kind of undergirding, overwhelming peace and acceptance the entire way, even amidst those tough days, tough moments, tough circumstances, all that kind of stuff.
Bill Gasiamis (41:15)
Yeah, I’ve got, um, um, I’m 51. So I’m a few years, uh, older than you a couple of decades. And also I am, uh, going to be, it was 2012. So I’m in 2016, it’s going to be 14 years since the first incident. So I’m a few years ahead of you with regards to like my, the time since my first incident.
And then, ⁓ man, that’s been a journey, like so many things to overcome and so many challenges with deficits on the left side, all that stuff, all those things are like pretty normal things. And then life, life happens to everybody. That’s a forever thing that doesn’t pause. can’t just pause life and then deal with all of your stuff and then get back to life. ⁓ So that’s an interesting challenge. And then as you get older, know, other things start to play up. And for me, I,
Navigating Emotional Challenges Post-StrokeI started getting really bad migraines recently. ⁓ for many, many years I’ve had just headaches almost every day, either constant or intermittent, or sometimes they’re in the morning, sometimes not there, ⁓ in the morning. And sometimes they’re at night, like all over the place, just headaches everywhere. And my blood pressure went, went really high, ⁓ from somebody who had normal blood pressure literally a year and a half ago to, you know, it being at like one 70 over 110.
And that meant that that created a new wave of doctors appointments, checkups, tests, scans, a whole lot. And I remember I did come home one day, my wife asked me about my recent appointment or scan or checkup or whatever it was. And I just said to her, I think I’ve done enough time. I’ve had enough medical issues. I don’t need anymore.
And I did actually even say like, is this happening to me? I’ve had enough. it just goes to show you like even in your ⁓ calmness and your ability to ⁓ move through and overcome and get better and have a podcast and share all those amazing stories from people and, you know, show hope and all that type of thing. You still have those days. You still have those days. It does get the better of you. And it’s then.
realizing that you’re in that moment and going, okay, I’m going to allow myself this moment, short amount of time, whatever it is, I’m going to have the pity party or whatever you want to call it. And then I’m going to refer back to all the things that I did previously to get me beyond this moment right now. I’m going to refer back to, is it counseling? Is it church? Is it ⁓ contemplation of my faith, my beliefs, putting in action?
my problem solving mind, my ⁓ curious mind, ⁓ whatever version it is so that you can deal with that, contemplate it, feel the feels and then ⁓ move on and shift it and change it and become proactive. it doesn’t really, I’ve found that stroke is kind of, I’ve said it like this, I’ve mentioned it a few times, like it’s the gift that keeps on giving because
The lessons still coming. And I’m not saying that in any way to promote it or to say that it’s amazing. Like it’s not something that I would wish on anybody and I would prefer people never had one. But since you’re here, what else is there to do? Like what else can you possibly do other than roll with the punches, so to speak, or get back up when you get knocked down, you know, there is just no other way to go about it. You have to put in place all the time discipline.
You’ve got to be disciplined about putting in place the solutions to overcome the thing that you’re feeling right now. ⁓
Daniel Coggins (45:16)
Yeah, that was so much of my mindset as well, because when I had the stroke, was 28 years old. And, you know, that’s why when you asked the like fork in the road question for me, I didn’t experience a big one because I think in a lot of ways, I just don’t even know that I had much of an option. You know, I think it was kind of. It was like roll over and. You know, not do anything with this and don’t try or.
do the thing because I have so much life ahead of me, know, God willing, and I’m 28 and I’m married and you know, my wife and I have one day we’d love to have children and all this kind of stuff. And ⁓ you know, like I think for me knowing that like I’m 28 years old, I kind of just have to press ahead and do what I can do my best, ⁓ seek out the therapies that I need to seek out and
put do the exercise that I need to do put the discipline implement the discipline in my life that I need in order to. Game back as much as I can to minimize the deficits you know. I’m going to have deficits but you know how can those be as. Least debilitating as possible how can I get back to work how can I drive again how can I. Game back some of those things that.
those things that make me independent that I don’t want to not in a hope to like have the mirage of like, I’m independent and I don’t need anyone because that was obliterated. That was blown up. But get back to where I have some of those things that make me independent that allow me to, you know, contribute as a friend and as a husband and hopefully one day a father and all these kinds of things. How can I do the things in my life that will help me get to that point?
Because if I don’t, I’m 28 years old, now I’m 30. So it was for me, was pretty obvious, it was pretty clear, I need to do this, I have to press forward. And I had so many folks in my circle and people in the community that have been cheerleaders and advocates and encouragers and pushed me forward. And when I wanted to, you know.
take my foot off the gas or give up or whatever they’ve kept me going and they’ve encouraged me and all that kind of thing. So there’s been so many people that have done that, but yeah, for me it was very much like, is, it’s kind of obvious to me, this is really the only thing I can do. The alternative is just so not what I wanna be. I don’t wanna shrivel up and shrink back and.
live in fear, live in the pity party or whatever, obviously moments of that, but living in that was just not really an option for me, I don’t think.
Bill Gasiamis (48:20)
Yeah, sounds like you burn the bridges, you know, get to the other side of the, could get to the island, burn the bridges and that’s it. This is the only option you have. got to deal with what you’ve got when you get there. And also, ⁓ it’s like suffering, but with purpose, like there’s a purpose behind all of this rather than capitulating and going, I’m not going to do this. That’s it. I give up. But then you’re suffering without purpose because suffering doesn’t kind of go away.
you’re going to suffer the road to recovery or you’re going to suffer the capitulated ⁓ path, which doesn’t give you anything positive. You don’t get anything out of it. It just becomes a constant never ending, like really terrible non-productive suffering.
Daniel Coggins (49:14)
For sure. And I’ve seen that to the point of purpose. I’ve seen that and I see it more and more honestly as time goes. Just in conversation with people and I’ve been able to share my story some with folks. You know, I see the purpose in my story. I see the purpose in what I’ve walked through and I’ve been able to share that story with others and that gives it a lot of purpose. And that doesn’t mean it’s like a
fun story or a fun experience in every way. But it is, it does give it purpose to say, you know, Hey, this happened to me, but, I didn’t just like roll over and take it and let my life just like disintegrate, but rather I’ve allowed it to like push me forward. ⁓ and then yeah, there’s purpose in it. God’s been with me the whole way. And I
I’ve come to know God more personally and in a deeper way than I did before. So I’m able to share that with others and I’m able to share my experiences and what I’ve learned. And it’s given me access to relate to people that I couldn’t relate to beforehand and share with and talk to people that maybe I wouldn’t have connected to beforehand. ⁓ It’s given me…
a voice to have something to share in certain circumstances that maybe beforehand I wouldn’t have much to add or to give. So yeah, I’ve seen a ton of purpose for myself in the journey and then kind of this road that I’ve walked since then.
Bill Gasiamis (50:57)
Yeah. And here you are on the podcast with somebody on the other side of the planet who you never met before. We’re sharing a story and the purpose of that is hopefully it reaches somebody and makes a difference in their recovery and helps them overcome what it is that go through. They’re going through ⁓ contemplate perhaps ⁓ things in a different way from a different perspective and maybe help them on their journey to overcoming whatever challenges they’re facing.
Daniel Coggins (51:27)
Absolutely. Absolutely.
Finding Purpose in Pain After A Basilar Artery StrokeBill Gasiamis (51:31)
What would you say if you had to rate them? What would be the hardest challenge that you had to overcome? Do you think it was physical or emotional? I think…
Daniel Coggins (51:38)
I
I would say, think the physical piece has been quite challenging and I think I still have that challenge in a lot of ways. I think some of that I’m going to live with probably the most of the rest of my life. I still struggle with a lot of fine motor stuff on my left side. So typing on a keyboard is very tough, very slow. do a lot of one-handed stuff as much as often as I can.
know, physically, like, I, said, I jog beforehand, right? So I’m actually tomorrow with a few friends. We’re running in a 5 K in the city that I live in. So that’ll be kind of that’s been a goal of that on the calendar now for for a while. So that’s going to be exciting to get out there. Run run a 5 K beforehand to 5 K would have been, you know, no big deal now a 5 K.
is about equivalent to like running a half marathon for, in terms of fatigue and effort that it requires and all that kind of stuff. Yeah, physically, I think I still have a lot of challenges and I think I will. I’ve come a long, long way from not being able to, not being able to stand and you know, left-hand my, my left-handed speed and accuracy and coordination has
come a long way, even though it’s still not anywhere near what it was. so physically, I think I’ve come a long way, but I haven’t like fully overcome and I don’t know that I will, but then emotionally to that one, I would say so early on, the interesting thing about the cerebellum is it, it’s smooths. The thing that I learned through this, which I did not know beforehand is I guess the cerebellum helps with like
smooth movements, right? So any sort of smooth movements with my hand or with my body, but then also metaphorically with like my emotions. So transitioning from one emotion to the next, if you know, normally people would be able to transition from the feeling of sadness to not feeling sadness, that might happen relatively seamlessly and smoothly, but for me, it’s much more abrupt now. ⁓
And so like early on I would have emotional moments where like I would just go from one feeling or one emotion to the next pretty quickly. And it was harder to control and it was harder to manage. So, but I do feel like in a lot of ways I have been able to overcome a lot of that, which in not a lot of that’s not even bad. I think it’s, it’s just, it was interesting to kind of navigate and figure out how to, how to manage my emotions. ⁓
But one of the gifts that I’ve found through all of it is actually while I’ve come a long way in how to manage my emotions so that I can just engage in more situations and be present in more spaces. While I have learned how to do that, I do have, think, ⁓ a more heightened emotional sensitivity now than I once did. And in a lot of ways, it’s actually been a gift to me.
Um, so for example, um, like I’ve said, I’m very involved in the church that I go to and, and this doesn’t happen all the time, but a lot of times when I go to church now and we’re singing, we have music, we’re worshiping. And a lot of times there will be something that we sing or something like a lyric in the song that will just really touch me and affect me emotionally. Um, and I’ll tear up or get emotional.
And early on that would happen like all the time, know, that like two years ago, that’d be every song every Sunday. And I just be like, okay, this is kind of annoying. I’m kind of, this is not enjoyable because I can’t control it at all. Whereas now it’s not as often. So it’s actually, so it’s not annoying in that way, but it’s actually a gift when it does happen because I can feel
I guess my emotions being affected by what I’m doing. And ⁓ it’s, it’s, I have a broader, I think, range of emotion, emotional experience than I once did, which is actually in some ways now that it’s kind of regulated a little bit. That’s actually a gift for me that I’ve been able to experience.
Bill Gasiamis (56:30)
I love that. So there is a medical term for that heightened emotional response, the pseudo bulb affect.
Daniel Coggins (56:38)
Okay.
Heightened Emotional Sensitivity as a GiftBill Gasiamis (56:40)
Some people have the laughing version of it where they laugh uncontrollably in places that perhaps they shouldn’t be laughing. some people who I’ve interviewed found themselves at a funeral and needing to be crazy laughing. ⁓ so it’s not appropriate, ⁓ but again, it settles down for people and most people are able to control it, or, manage it later on. So years down the track, had the same thing. I still have that.
sensitivity to ⁓ certain experiences that make me emotional. ⁓ Music is one of them. there’s a French song by ⁓ an artist called ⁓ Barbara Pravi or Pravi. And she sings a song called Voila Voila. And the song is about a performer describing what it’s like to be a performer kind of thing.
and sort of doing a meta description of what ⁓ performers go through, something like that. So it’s a performer singing about what it’s like to be a particular type of performer. The thing about it is ⁓ it’s an amazing song when Barbara Pravy sings it. But then there’s a young girl, Emily Cock, who won one of the like America’s Got Talent type of
shows, but in, think, Denmark or somewhere in some other country. When she was like 13, I think it was the children’s version of the show when she was 13. So as a result of that, she wins the opportunity ⁓ to ⁓ perform on stage with Andre Rieu in some amazing outdoor theater somewhere in Europe, I don’t know where. And Emily comes on
And she sings that song better than the original artist that first sang that song a couple of years earlier. And I’m just watching it on YouTube and just in tears because it just gets beyond your barriers. It gets beyond ⁓ the things you put up to protect yourself in the past that nothing’s going to penetrate. And it just gets in there. And the whole story about it is
It’s a fundraiser, that particular event. Emily Cox got a particular condition, which means that she has trouble with digestion or something like that with her stomach. It doesn’t have the ability to digest. So I connect all those dots, who she is, what she’s suffering through, how she’s tackling it, the song that she’s singing, the fact that she’s 13, the fact that she won through all those
you know, difficult things that she’s had to put up with her short life. She’s, you know, um, won this particular event and she’s passionate about singing. And now I get to sit on my couch and watch this song on YouTube. It’s, moving. cannot not be moving. It is just impossible for it not to be moving. So, um, and I get that sense as well. Like I experienced things far more deeply and I never thought of it as a gift, but it’s a really
right way to describe it. really is. It seems to me now that I get to contemplate what you said, that it is a very, ⁓ the spectrum of feeling has, you know, has widened.
Daniel Coggins (1:00:23)
Absolutely.
Bill Gasiamis (1:00:24)
and I
get more of it. I got initially more of the bad as well, which was interesting to contemplate, overcome, find new skills to deal with and learn how to apologize for, for being ridiculous when I shouldn’t have been. know, even that’s a gift, but on the other end, it’s more enjoyable, I think, to be able to get emotional. And at one point, the camera is on the crowd and she’s got this young girl has got like,
I it’s a small shot of a few people, but if you just zoomed out on that shot, which you don’t get to do because you can’t see all the individual faces, I reckon she had half the crowd in tears. It was so moving. was unbelievable. I’m going to put a link in the YouTube description for people who want to watch that video because it is phenomenal. Yeah, sounds awesome. So thank you for sharing your…
You know your perspective on that, that, ⁓ that it can be a gift because a lot of people take it the wrong way. ⁓
Daniel Coggins (1:01:33)
That was the way someone framed it for me very early on, because I was sharing with them kind of the frustration around it. And one of my good friends kind of framed it in that way. And that was, I don’t know, that was two, probably two years ago now. And since then that’s really helped me just kind of have it be able to view it through a different lens and actually see it as a gift and as a positive thing, not as this like nuisance or irritation.
Sharing Stories and Raising AwarenessBill Gasiamis (1:02:01)
Yeah. So recently ⁓ I had an appointment with my neurosurgeon to do a follow up based on my headaches and all the high blood pressure and all that stuff. And as a result of that conversation, she asked me to do a small presentation at the ⁓ Royal Melbourne Hospital Neurosciences Gala Ball. And they wanted me to present before the main auction so that I could share my story and sort of try and get the crowd, move the crowd.
into a place where they’re going to raise their pedal and buy lots of stuff and spend lots of money at the auction. There’s 400 people at the event. It’s black tie. Like it’s full on. And I agree to it. I love speaking in public. It’s no issue. You’re asking me, you nervous? And I’m like, no, I’m not nervous. I don’t get nervous. I enjoy the opportunity. And as soon as they call my name and I have to walk, you know, the 100 yards from my table to the stage.
and the crowd is clapping, I start getting emotional. I’m not even on the stage yet. And I have to calm myself and gather myself because I’ve got to get through a nine minute presentation. So I get up, I get introduced. I start speaking and I’m going okay for the first one or two minutes. And then I start to mention, I think my children or something like that. And then once again, I start getting emotional.
And I have to compose myself through this presentation about four or five times to get to the end of it after eight minutes or so. And I didn’t see it as a gift then. I see it as a gift now because the result of that presentation, not that I was the only reason why this happened, was that they raised over $100,000. So why not? Why not?
go out there, put it out. Maybe that emotion helped, you know, move the needle above a thousand dollars. don’t know. And that goes directly to supporting researchers to find new ways to support stroke survivors, other people’s psychological conditions. Do you know? Yeah.
Daniel Coggins (1:04:17)
I’ve had a similar experience. I’ve had a couple smaller opportunities in the past five, six months to share my story. And ⁓ the interesting thing too about my story is I’ve shared obviously kind of the stroke piece of it, but in that I had a 12 month period where there was other really challenging things that happened in my life as well. the stroke was the biggest piece for me, the most like the longest and the most…
life altering. But over the course of that 12 months, there was other really bad things that happened as well. One of which was that my dad passed away actually. I’ve had the chance to kind of share the story of that full year now a couple of times. And both times that I’ve done that with a group of people, I struggled to get through it.
I’ve struggled to get through it without, you I’ve had ⁓ emotions and I’ve been, you know, just kind of slogging my way through it. ⁓ to your point though, like, I’ve had to kind of like take moments to collect myself or whatever, but I think I’ve just been convinced that, you know what, like in those situations when I am sharing,
my story and I’m specifically able to share kind of like from my perspective what God’s done in my life over the course of that year and over the course of the challenges that I faced. ⁓ While I’m able to communicate that and share that, I actually think it is a gift to the hearers when I’m able to express emotionally to that degree what has happened to me. ⁓
Obviously, I don’t want to be so emotional that I can’t get words out and I can’t think coherently. Right. But so long as I’m able to still communicate and think clearly and communicate what I want to communicate, I actually think the, emotions that I’ve been able to to give in those situations actually heightened. The, uh, the response and the effectiveness of what I’ve been able to share and.
It made it real, right? Because if I say everything just with a really flat face, ⁓ I don’t think it probably lands as well as if I’m there expressing emotions as I’m sharing it to the here. So yeah, I mean, think that’s part of the gift of communication is the way in which it’s communicated really does impact the person that’s receiving it.
Bill Gasiamis (1:07:06)
I think it gives the here the permission to also be emotional. Yeah. Especially men who avoid it if they can’t. 28 year old guy telling me a story is crying in front of me. Hmm. Okay. Maybe I can do that. Yeah. Maybe if I do do that, it won’t be the end of the world. Maybe they get to observe how other people react and realize that it’s people are not ridiculing you or they are.
Daniel Coggins (1:07:13)
for sure.
Bill Gasiamis (1:07:36)
being moved by your, know, they are touched by your expression or whatever it is. And I think that’s probably what I kind of get out of it is that every time I cry in front of a crowd, 444 people, it doesn’t matter. It’s still, I don’t walk away. I don’t go to another room. I don’t try and, you know, wipe my tears and make everyone feel better. I just go through it and then.
Yeah, get through it and then I just smile and we move on to the next part of the conversation. It doesn’t really matter.
Daniel Coggins (1:08:10)
Absolutely. And I’ve told folks too in those scenarios, I’ve told them like, hey, I even want one of the ⁓ talks I was giving, I was getting emotional, I was trying to collect myself a little bit. And I kind of told the group, was like, hey, like, essentially like, I’ve done this in lots of other scenarios. This isn’t the first time I’ve done this, right? It might be the biggest group of people that I’ve done it with standing in front of them and being
right there up in front of everybody. But I’ve sat in a coffee shop with the person I’ve met for the first or second time and I’ve sat there and I’ve cried with them and I’ve sat and cried with a lot of different people over the course of the months and weeks. so it’s not the first time when it happened in those scenarios, it was just maybe the biggest group, or bigger group in those scenarios.
Bill Gasiamis (1:09:10)
Yeah, I hear you. I’m just going to go back for a second. You mentioned that you’re typing a little earlier and something sprung to mind. Sure. My typing ⁓ left side is a little bit labored as well. It’s not ideal, but I can still type. and recently I came across a AI product called whisper flow. I’m going to have a link in my bio as well. And my little link will give you a one month free trial. this is not a
I’m not sponsored by them or anything. just use this product. I discovered it about six weeks ago. And what you do on my Mac book computer, you program the function button as the button. As soon as you press it, it starts recording and in any field on any website in anywhere that you ever in any program. If your cursor is in that particular field and you press the function button.
And then you speak just like we’re speaking now. It types. It types for you. ⁓ I think my typing speed is like at about 120 words a minute. I mean, I would never be anywhere near 120 words per minute. And it’s accurate. It corrects mistakes as you make them. It kind of gives the right context. Every once in a while you have to go back in and ⁓ change a letter or fix a word. ⁓
takes away that the time it decreases the amount of time it takes to type words into into your computer basically just press the function button and it does it and it’s 150 I think it was 150 US dollars the year for the whole year something like that yeah yeah
Daniel Coggins (1:10:58)
That’s not bad at all.
do a lot of that’s super cool because I do a lot of voice dictation in my job and even his personal time as well. But I can’t do it everywhere. So I do it in like, I do it in the Outlook, Microsoft Outlook or certain applications that have the ability to do voice dictation. But if I’m just searching the web or whatever and I need to put something in a box.
I can’t do it, so that’s actually a fantastic ⁓ tool that sounds like that can really help use it more broadly and that it has a lot of the, it’ll fix mistakes and all that kind of stuff. That sounds great.
Bill Gasiamis (1:11:40)
Yeah, and if you’re on the web and you’re going to Google search bar and you just type in recoveryafterstroke.com, it’ll put it in the correct format so that you can just search it.
Daniel Coggins (1:11:52)
Wow, that’s awesome.
Life After Basilar Artery Stroke: Embracing New BeginningsBill Gasiamis (1:11:54)
Brilliant. I’ll have the link for that and I’ll send it to you as soon as the interview finishes, just so you can check it out. can check it out for a month for free. And what’s cool about the free month, it is like the full suite. So you get to experience exactly how it is and you don’t even have to put your credit card down for that entire month. And then if you get to the end of the month and you don’t want to pay, it’ll just go from being the full suite, which gives you unlimited words. It goes down to about 2000 words a month or something like that. And it’s free.
You don’t have to pay anything. even for people who ⁓ don’t type as much as I would or you would, ⁓ just the free version will change your life because it’s amazing. It’s a great, amazing tool and hack for people who have ⁓ deficits in one hand or the other. look out for that link, guys. ⁓ So what’s life look like for you now?
Are you moving through life? What are you doing? How are you involved in your day to day? What’s it like now?
Daniel Coggins (1:13:00)
Yeah, so I went back to work. My company actually held the role for nine to 10 months, which was fantastic. But I work in a role. ⁓ It’s called strategic sourcing. So I have a sourcing role. So I work with a lot of sales folks negotiating contracts, negotiating deals and that kind of stuff. So that’s what I’ve been doing. And I’ve been able to get back into my job. ⁓
day to day, I’ve been able to step back into ⁓ things that I’m involved in, recreationally to some extent, and then spiritually in the church. ⁓ I’m actually one of the leaders at my church, so I’ve been able to step back into that role, which is exciting for me. ⁓ So I think there’s a lot of changes overall. My personality has changed a little bit. My abilities have changed, but I am able to do
a lot of things that I once did. I still have some therapies that I go to where I’m still sharpening different skills. We have a few fantastic therapists in the area that I’ve been able to just build relationships with. So I still go there because I’m still seeing progress even if it is slow with them. And…
Yeah, so and then from a wife and I, we, actually found out recently that we actually are expecting. So we have a baby coming and that was very exciting for us. Um, because. You know, before we didn’t have a baby before and then I have the stroke, I’m kind like, okay. Well, we want to have a child so, but we’re just have to figure this out. So that’s on the horizon for us now. So we’re super excited about that. That’ll be in.
Bill Gasiamis (1:14:53)
Excellent.
Daniel Coggins (1:14:55)
Yeah, I mean, I think just grateful day to day, you know, for what, what God’s given me the ability to do. And, um, I’ve been able to get back to a lot of things that I once did. Some of it looks different, you know, you know, I have different aspirations and desires and things. I want to help people that, you know, have had. Freak medical things happen to them or strokes, young, young stroke survivors, you know, people that have had.
Brain injuries, what have you, so that’s kind of a new thing in my life that was not there beforehand. So I’m super excited over the next several years of how that could, what I could do with that and where I can help people and what opportunities might arise in just in my community or wherever, where I can help people.
Bill Gasiamis (1:15:45)
Sounds
great, man. Good work. ⁓ if someone’s listening, that’s just how to strike. What would you say to them?
Advice for Stroke SurvivorsDaniel Coggins (1:15:52)
I would
say, I would say, you know, just keep at it. Don’t like, you know, I don’t know where everyone listening is, you know, listening from, but I know at least in the United States, there’s a lot of, um, listen, like the medical system, there’s a lot of barriers put on like how far you can get. And there’s a lot of, you’ll never get past this or you’ll never get past that. And
And I would just say, you know, think outside the box, find, you know, people that aren’t going to limit you and that aren’t going to tell you that you’ve reached your ceiling and put those people in your corner. ⁓ yeah, don’t be limited by what people around you or what the system around you might tell you is the maximum that you can reach. and then really do just like, I guess, to what we talking about earlier, don’t.
Don’t view it as all negative. Find how something bad, something hard, something painful and something that brings a lot of loss in your life, consider how that could actually be used for good in your life and in the life of others and how actually it’s maybe not fully a bad thing and how…
how it could be used to the betterment of those around you if you allow it to.
Bill Gasiamis (1:17:25)
Yeah. Yeah. Find a, ⁓ like, ⁓ like allocate something like, you know, what’s good about this right now? What could be good about this? If there was something good about this, what might it be? Right. Some kind of question like that. Squeeze out the silver lining from the dark moment. know?
Daniel Coggins (1:17:53)
And just being open to it, you know, like, don’t think every moment you’re always going to have that positive thing. I’m not advocating even for, you know, flimsy, always happy, you know, non-realistic. I’m not advocating for that, but really, but also I guess questioning some of the questions that you might have like, Hey, why did this happen? And actually going past that and asking, well,
you know, how actually could this be used in a positive way and pushing past some of those things and not just like stopping there and letting that just like derail your entire life.
Bill Gasiamis (1:18:38)
Yeah. What do you believe now about healing and growth that you didn’t believe before?
Daniel Coggins (1:18:43)
I think,
well, I mean, in terms of healing for me, like I really do truly believe that like the Lord had me in his hand and that he preserved me and kept me. like, like I believe God played a part in that and that he helped me heal some and improve to a point and stay alive. Right. So that’s, that’s where I’m at on that piece. Within growth. mean, I think.
What I believe about growth is like, kind like what I was just saying. I don’t think, ⁓
I don’t think we should put limits and ceilings to things. I think sometimes we, limit ourselves if we say like, I can only do this or I can only go this far, or I can only achieve X. It’s like, well, the minute you put that ceiling on it or that app, then you probably won’t go past that because you’ve kind of already made it up in your mind that you’re not going to be able to do more. ⁓ so I think growth is.
in a lot of ways is kind of what we make it and it’s how far do we want to go? How much do we want to press in that process?
Bill Gasiamis (1:19:55)
I love it. And what has stroke recovery taught you that most people might not understand?
The Dichotomy of Support and LonelinessDaniel Coggins (1:20:03)
I
there’s a dichotomy in stroke recovery where, and the dichotomy is this, I think, and I’ve experienced it, where I felt so supported and people have been so quick to listen to me and to hear my experience, to hear my perspective, to be patient with me, to take into account my needs.
So people have been amazing, they’ve been fantastic.
But which is like, I guess the really positive side, but then the other side is it’s a very individual experience. And there’s a very unique, I think, loneliness that kind of comes in the midst of it where ⁓ people love you and people love me, people help me, people look to my needs. They listen to me. They want to understand me. All of those things.
⁓ But then it gets to a certain point where ⁓ they can’t know all the things, they can’t know all the experiences. They can be as empathetic as they’d like, they can put themselves in your shoes as much as they’d want to, but there is a point where they aren’t gonna be able to get there. ⁓ that’s hard, and that’s hard. That’s one of the hardest things I’d say that I’ve experienced is,
those moments where they just cannot, no matter how close they are to me, whether it’s a really good friend of mine or a family member or my wife, I can explain it, but they still might not fully be able to get it. ⁓ So it’s this weird dichotomy of experiencing that pointed loneliness, but then also feeling so supported and cared for and loved. Yeah.
Bill Gasiamis (1:22:07)
That’s such a amazing way that you describe that unique loneliness because that’s exactly what it is. People will never get it. And I suppose if you’re a caregiver listening to this and you want to be supportive and you want to be all the things that your heart is telling you to be brilliant. Also accept that you will never really understand that person in their unique loneliness.
But also if you’re a stroke survivor and you’re experiencing the unique loneliness, also understand and come to acceptance that the other people can never know your unique version of loneliness because in order for them to do that, the only way they can come anywhere near that is to have a stroke themselves. And we don’t want that. We don’t want anyone to know what it’s like to be us at all. We would rather they didn’t.
And that and therefore if you can accept that they never will not through lack of wanting trying or effort just because that’s how it is Well, then you’re going to be okay sitting in your unique loneliness And then what you can do is find a way to channel that to make it ⁓ Transform into something else, you know, initially it’s hard to sit there. I’ve been there and I was frustrated with my wife
and my children and everybody who didn’t understand me. But the reality is, ⁓ it was better when I became aware that my unique loneliness then enables me to do something that nobody else can do with their experience. And for me, it was my version of my stroke podcast, my version of my book, et cetera. I channeled that unique loneliness into other things that I never ever would have contemplated before. ⁓
And I think that unique loneliness gives you another gift of a perspective that you can’t get any other way. You just cannot get it. But it’s what you do with it.
Daniel Coggins (1:24:20)
Yeah. Yeah. And I would just one final thing I would add on that too, is for me, I would say in my moments and I guess my state now in this, having had a stroke in my state of unique loneliness, what we’re in those places and in those times where no human can connect with me or understand me fully. Those have been the moments.
where God has really ministered to me and met me most deeply and in the most real way and being able to share in that with God and from my faith background to share that with Jesus and to know that ⁓ He endured suffering and hardship and I too have done that and I actually share with Him in that now and there’s actually a very comforting
thing that comes out of that, which is kind of mysterious and hard to even explain. But in those unique, lonely moments are when God has met me, I would say.
Bill Gasiamis (1:25:29)
Yeah, wow, that’s profound. ⁓ What makes you feel proud of how far you’ve come?
Celebrating Progress and AchievementsDaniel Coggins (1:25:35)
⁓ you know, I mean, these are just kind of a couple of goals I’ve had over, ⁓ over time, but, you know, I’m proud that I’ve been able to get back to some of the things that I enjoyed doing. said earlier, like hiking, and last, last month, two months ago, my wife and I, went on a vacation and went to one of the national parks here in the U S and we were able to do a hike.
that was 2000 feet of elevation gain and then like seven, six to seven miles. And it was tough, but it was by far like the hardest hike I had done. And my wife and I, finished it and later that day we looked at each other and I was like, I think that would have been the trail that we would have chosen before the stroke. Because over the past two years, a lot of the times when we’re choosing trails that we wanna do, we’re having to like, well like,
that one would have been nice, but I can’t do it. So we have to choose one that’s easier or shorter or whatever. But the cool experience two months ago was we did a trail and it took us most of the day and it was challenging, but it had amazing views and it was all the things that we would have probably chosen to do had I had a stroke or not. So that was just a really cool moment to be able to do that. ⁓
And then also, so, like I said, I’ve done a couple of triathlons and three months ago, my wife and I, and one of our friends, we did a sprint triathlon relay and I was able to do the swim portion of that. And ⁓ that was really cool just to be able to, it was, was challenging. ⁓ The swim was not easy for me, but it was really cool to kind of get back in, that space and.
do something and we didn’t do it competitively of course, but we did it. And it was the same kind of buzz that we felt ⁓ when doing triathlons previously. So it was kind of just cool to have that experience ⁓ again, since we had not been able to do that in several years.
Bill Gasiamis (1:27:55)
Yeah, that sounds amazing. Daniel, thank you so much for reaching out and joining me on the podcast and sharing your story. really appreciate it.
Daniel Coggins (1:28:02)
Absolutely, Bill. I really appreciate all your time. Thanks so much for your time, your listening, and ⁓ just let me have an opportunity to share with everybody.
Bill Gasiamis (1:28:11)
Thanks again for joining me for this conversation with Daniel. If his story resonated with you, the sudden collapse, the dizziness no one recognized, the long hospital stay or the emotional ups and downs that come after a cerebellar stroke, you’re not alone. There are thousands of survivors walking this path right alongside you. Remember to subscribe on YouTube or your favorite podcast app because these stories really do help people feel less isolated.
Remember to leave a comment or a review. It helps more survivors find the show and remember to take a moment today just for you. You’ve earned it. And if you’d like a deeper dive into healing mindset and post-traumatic growth after stroke, my book, The Unexpected Way That a Stroke Became, The Best Thing That Happened is available now. Thanks for listening and I’ll see you in the next episode.
Opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed. All content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gassiamus. The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical
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Post-Stroke Fatigue: Living With Exhaustion That Family Doesn’t UnderstandWhen you meet someone who has had a stroke, you expect to see something.
A limp. A drooped smile. A visible clue.
What you often can’t see is the one thing that shapes their entire recovery: post-stroke fatigue.
For survivors like David Willick, fatigue wasn’t just tiredness — it was a complete rewiring of how his brain operated. And because nothing looked “wrong” from the outside, the exhaustion was misunderstood, dismissed, or invisible to everyone around him.
This is the part of stroke recovery that many people never talk about.
But for countless survivors, it becomes the most life-altering part of the journey.
What Post-Stroke Fatigue Really Feels LikeIn the first weeks after his ischemic stroke, David slept for 44 out of 48 hours. Twice.
Not because he wanted to.
Not because he was lazy.
But because his brain was fighting to rewire itself at a level no one else could feel.
Post-stroke fatigue isn’t physical tiredness.
It’s neuro-fatigue — the deep brain exhaustion that follows even the simplest task.
For David, driving for ten minutes meant sleeping for hours.
A restaurant meal became overwhelming within 30 minutes.
Noise, light, background conversations — all of it flooded his brain faster than it could process.
Survivors often say:
“I look normal, but I’m exhausted inside.”
And that’s exactly what makes post-stroke fatigue so frustrating.
People don’t see it, so they don’t understand it.
Why Post-Stroke Fatigue HappensAfter a stroke, the brain becomes like a construction site.
Damaged pathways collapse.
New ones must be built.
Old ones must be rerouted.
Simple tasks suddenly require manual mode instead of the automatic brain patterns that existed before.
David described driving after stroke like this:
- “I had to consciously think about braking.”
- “If I brake too softly, I’ll hit the truck ahead.”
- “If I brake too hard, I’ll get hit from behind.”
- “Where’s the noise coming from?”
- “Why is the windshield so bright?”
That’s one minute of mental processing… for something he had done automatically for decades.
This is what drains survivors.
Not weakness — but the intense cognitive load of rebuilding pathways.
The Part Survivors Struggle to ExplainOne of the hardest parts of David’s recovery was convincing others he wasn’t alright.
“I looked normal,” he said, “but I was struggling more than ever.”
Post-stroke fatigue is invisible.
You can’t X-ray it.
You can’t bandage it.
You can’t show someone what light sensitivity feels like or what it’s like to suddenly forget where you parked your car.
When fatigue shows up, it looks like:
- turning down invitations
- leaving a restaurant early
- needing another nap
- feeling overwhelmed in a shopping centre
- struggling to keep up with conversations
- cancelling plans last minute
To friends and family, it can look like disinterest.
To survivors, it feels like survival.
One of the best things you can say to a survivor is:
“Whatever you’re feeling is valid… and I believe you.”
The Non-Linear Reality of RecoveryEvery stroke survivor eventually discovers this:
Recovery is not a straight line.
David described it as a long-term stock market chart — trending upward, but filled with unpredictable rises and drops.
Two good days in a row don’t guarantee a third.
A setback doesn’t erase progress.
Your brain is always working, always rewiring, always adapting.
And fatigue can flare for reasons no one can pinpoint:
- overstimulation
- weather
- stress
- sleep changes
- doing too much the day before
- mental load
- emotional overwhelm
You can be “fine” one moment and overwhelmed the next.
This is the reality survivors live with.
And it doesn’t mean they’re failing.
It means their brain is healing.
How David Rebuilt His Energy and IdentityDavid didn’t just rebuild strength.
He rebuilt himself.
Here are the strategies that helped him navigate post-stroke fatigue and regain stability in his life:
1. Journaling the Little WinsDavid tracked his improvements daily.
Not because he felt optimistic — but because depression and mental spirals made progress hard to see.
Reviewing weekly entries became proof that he was improving, even when he couldn’t see it in the moment.
“When I felt discouraged, I looked back at the journal and saw how much better I was than the week before.” — David
2. Respecting the Brain’s Need for RestHe learned to respond to fatigue, not fight it.
Early on, if his brain said sleep, he slept.
If fatigue hit while walking, his wife spotted it instantly.
If his voice changed — softer, heavier — it became a signal that the day needed to slow down.
Rest wasn’t weakness.
Rest was medicine.
3. Gradual Return to WorkDavid went from:
- 6 hours per week
- to 12
- to 20
- to 30
- slowly back to full-time
At 20 hours per week, he almost quit — the fatigue was brutal.
But pushing in measured doses expanded his “ceiling” a little at a time.
This part of his recovery became one of the biggest catalysts for growth.
4. Redefining SuccessBefore the stroke, success for David was high performance, global work, and climbing the corporate ladder.
After the stroke?
Success became:
- peace
- health
- family
- meaningful work
- mentoring the next generation
- living with purpose
That shift transformed everything.
Advice for Survivors Facing Post-Stroke FatigueDavid’s message is simple and powerful:
“It’s going to be okay.”
You may not return to the person you were before — but you can grow into someone wiser, more self-aware, and more grounded.
Here’s what he wants every survivor to know:
- Recovery is possible.
- Fatigue doesn’t mean failure.
- You can improve for years.
- Rest is part of rehabilitation, not the opposite of it.
- Don’t compare your recovery to anyone else’s.
- Track your progress — your future self will thank you.
- Your mindset shapes every part of your healing.
And perhaps most importantly:
“You’re allowed to say no. You’re allowed to protect your energy.”
If You Love Someone Who’s Recovering From Stroke…Understand that:
- They’re not faking the exhaustion.
- They’re not being dramatic.
- They’re not “overreacting.”
- They’re not trying to avoid you.
They’re trying to survive a neurological crash you can’t see.
Ask them gently:
“What do you need right now?” “How can I make today easier for you?” “Do you need rest?”
Support doesn’t fix fatigue, but it makes the journey human.
Next Steps for Your Own RecoveryIf you’re dealing with fatigue, overwhelm, sensory overload or hidden deficits, I want you to know something:
You’re not alone — and recovery doesn’t end after rehab.
Here are two resources that can help:
- My book: The Unexpected Way That a Stroke Became the Best Thing That Happened — a practical guide to post-traumatic growth after stroke
recoveryafterstroke.com/book - Patreon:
patreon.com/recoveryafterstroke
There’s a path forward.
There’s hope.
And your energy will rebuild — one small step at a time.
David Willick on Life with Invisible Fatigue After StrokePost-stroke fatigue can feel impossible to explain. David’s story reveals the hidden exhaustion behind recovery and how hope slowly returns.
Support The Recovery After Stroke Podcast on Patreon
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Highlights:
00:00 Introduction and Acknowledgments
06:37 The Discovery of PFO and Its Implications
09:20 The Day of the Stroke
11:16 Emergency Response and Delays
17:00 Initial Reactions and Miscommunication
25:23 Post-Stroke Fatigue and Recovery Challenges
27:28 Sensory Overload and Sensitivity
31:35 Emotional and Physical Challenges
37:01 The Journey of Recovery
41:13 The Impact of Memory Loss
48:10 Shifting Perspectives on Life
51:50 The Importance of Mentorship
01:00:14 Encouragement for New Survivors
01:11:46 Conclusion and Reflections
Transcript:
Introduction and Acknowledgments
Bill Gasiamis (00:00)
Before we get into today’s interview, I want to say thank you to everyone on Patreon who supports this show. You’re the reason I can keep creating this content after more than 10 years of doing it on my own. Your support helps cover hosting costs and keeps these conversations alive for the survivors out there who desperately need hope, clarity and community. I also want to take a moment to give a shout out to everyone who comments on YouTube, leaves reviews on Spotify or Apple, has bought the book
or simply tunes in without skipping the ads. You are helping stroke survivors feel less alone and that matters. Now today’s episode is a powerful one. I’m speaking with David Willick who experienced an ischemic stroke caused by a PFO, a hidden heart condition he never knew he had. What makes David’s story so important is that you can’t see the sensory overload, the extreme fatigue and the invisible deficits that shape his recovery.
If you’ve ever felt misunderstood because you look fine on the outside, but your brain tells a different story, this episode will resonate deeply. Let’s get into it. David Willick, welcome to the podcast.
David Willick (01:11)
I’m glad to be here. Thank you, Bill.
Bill Gasiamis (01:13)
David, what did a normal day look like for you before stroke?
David Willick (01:17)
Well, I had a global role in an internationally ⁓ recognized company. And I actually reported ⁓ into Australia from Canada. So I used to call some of my days bookend days because they would begin at 4.30, 5 o’clock in the morning and go for a few hours and then calm down a little bit.
and I would do my day job with my local people in my own time zone. And then right about 4.30, five o’clock in the evening, Australia would wake up and it would get super busy again well into the evening. And that was my day.
Bill Gasiamis (02:02)
Wow.
David Willick (02:02)
managing a large department and with lots of direct reports. So it was good, it was fun, but I thought it was Superman, I could do it all.
Bill Gasiamis (02:20)
And you probably did do it all for a little while.
David Willick (02:23)
for a little while.
Bill Gasiamis (02:25)
What industry was in?
David Willick (02:29)
It was in the electronics industry.
Bill Gasiamis (02:34)
So then the 4.30 start, was that just to get you going for the day? What was the 4.30 in the morning start all about?
David Willick (02:47)
Yeah, so what that was is working within the convenient time zones of the people that were in Australia. And so it wasn’t every day. It was ⁓ maybe once a week or twice a week, ⁓ but nevertheless. ⁓ And it was just over the years, it just became normal. And that’s just what you had to do. And you just rolled with it. So that was pre-stroke.
Bill Gasiamis (03:17)
What does the family life look like at that time?
David Willick (03:22)
You know, ⁓ we’re empty nesters, my wife and I, so, you know, and very ⁓ open and we did what we had to do. So when the kids were younger, the role wasn’t as demanding. And so I was able to have a fairly decent work-life balance ⁓ before that. But it was only really intense ⁓ for a couple of years before the stroke.
⁓ Prior to that, was less intense and therefore there was a fairly decent work-life balance ⁓ raising the kids to the point where they eventually left the nest.
Bill Gasiamis (04:01)
What were your goals, responsibilities or passions back then?
David Willick (04:07)
goals were, you know, family oriented, ⁓ you know, success oriented, ⁓ both success, you know, with, with home, but success with, ⁓ with, work as well and building a career and moving up the corporate ladder. and, ⁓ and my hobbies, you know, included, ⁓ doing stuff, sports, ⁓ woodworking, ⁓ you know, that type of thing.
Bill Gasiamis (04:37)
end of the interview, hopefully remind me if I’ve forgotten to ask you what success looks like now. I don’t want an answer now. I want an at the end because I imagine it will have changed just a little bit, but it’d be interesting to hear ⁓ what that is. So did you have a sense of your health back then? Did you have an idea of whether you ⁓ consider yourself healthy? Was there any signs of any ill health or potential challenges coming?
up.
The Discovery of PFO and Its ImplicationsDavid Willick (05:08)
No, there wasn’t. As a matter of fact, I would have annual executive physicals, ⁓ ate a great diet, I thought, you know, ⁓ fantastic, avoided, ⁓ you know, all of the taboo foods. ⁓ I had stopped drinking alcohol a few months before the stroke, because I just felt that it was the right thing to do. ⁓
new food guides introduced and not that I had a problem before, but it was just the new daily recommendations essentially were avoided if you can. And then, you know, as far as I had low blood pressure and borderline low, I had essentially low to normal cholesterol.
⁓ never smoked a day in my life, ⁓ anything. ⁓ and so, you know what I was, you know, after the stroke, when I was in the hospital, they said, you won the negative lottery. was like a one in a million chance you would have this. And cause you had no risk factors, ⁓ for that. And I’m not overweight. ⁓ you know, I’m in the same size pant that I was, ⁓ you know, finishing secondary school way back when.
And so, you know, it was just one of those things. And ⁓ in my case, it was, it ended up to be a PFO or a significant hole in my heart.
Bill Gasiamis (06:49)
Well, that will do it. Yeah. And one of those things can be there forever for some people and cause no challenges. then for some people, it then at some point does cause a problem. Did you have the PFO closed up?
David Willick (07:07)
I did. Unfortunately, it was after the stroke. ⁓ And so I had a catheter surgery, which is pretty amazing. You know, it was day surgery, right? And they, yeah, so you, I checked into the hospital at two o’clock in the afternoon, ⁓ did pre-op at 2.30. And essentially they, they put a camera up your vein in your arm.
And then the catheter with the device goes through the artery in your leg, in your groin area. And you’re completely awake during the whole thing. They’re asking you questions. And in my case, it was a pretty significant hole. So they said that the device that they used to cover the hole was 25 millimeters. ⁓ So pretty significant. And ⁓ they close it.
So it was interesting and I describe it to my friends that it was essentially like, you know, those fruity drink umbrellas that you get when you’re on vacation. It was essentially two of those going up through your groin. And the first one gets pushed through the hole, then gets inflated. And then the second one gets up to the other side of the hole.
and gets inflated and then they torque them down together and that plugs the hole.
Bill Gasiamis (08:35)
Wow, that is stunning.
David Willick (08:38)
And you know what? And then it is stunning. And so two o’clock check-in, pre-op to 30, procedure at about four or five o’clock, ⁓ post-op at about 6 p.m. They get you up walking around the ward of the hospital. If you can do one lap without bleeding, you’re good to go. And I was resting comfortably in my own bed by ⁓ 9 p.m. the same day it was done.
Bill Gasiamis (09:09)
That’s sensational. you know, years ago, maybe not that many years ago, that would have been an open chest procedure.
David Willick (09:18)
Exactly, it really was.
The Day of the StrokeBill Gasiamis (09:20)
That’s phenomenal. love how far technology science has come. It’s just brilliant that it can be like that. And to hear that, hopefully now the potential for another stroke has decreased even further.
David Willick (09:36)
Exactly. And so now that the PFO has been closed. So now that it’s been closed, they said my risk is decreased significantly.
Bill Gasiamis (09:47)
So on the day, what was the first sign that something wasn’t right?
David Willick (09:51)
You know, it happened in the evening ⁓ as I was sleeping. so first thing in the morning, we had a small dog at the time that required medication, that didn’t like the pill. And so I would open the capsule of his pill and put it in his food. And so normal day, I pick up the capsule because I’m right-handed with my right hand.
I went to take off the other side of the capsule with my left hand and I made three or four attempts at it. And I couldn’t line up my left hand to grab the other side of the capsule. So then I thought, well, that’s really, really odd. Eventually I got it, but it was multiple attempts. And then I decided, you know, let’s make a pot of coffee. And so I reached over for a plastic pitcher that we fill up with ⁓
with ⁓ water to fill the coffee pot and I dropped it. And I had no ⁓ sensation. I couldn’t detect how hard or how lightly I was squeezing the handle of the pitcher. So I dropped it. And after these two things happened, my wife was still sleeping at the time. I woke her up and I said, you know, something is not right. You know, get me to the hospital.
Emergency Response and DelaysBill Gasiamis (11:16)
We’ll be back with more of David’s story in just a moment, but first I wanna take a moment to acknowledge something important. If what you’ve heard so far resonates, the fatigue, the sensory overload, the frustration of looking normal when you’re anything but, I want you to know that you’re not alone. David’s experience mirrors what so many stroke survivors go through every day. And the second half of this episode gets into how he rebuilds his energy.
reshaped his mindset and found stability again. But before we continue, I also want to take a moment to thank Banksia Tech for supporting this episode. They’re proud distributors of the Hanson Rehab Glove by Syrebo a soft robotic glove designed to help stroke survivors improve hand function at home, whether you’re early in recovery or years into it. You’ll hear more about the glove later on. Also go to banksiatech.com.au
to find out more. So what went through your mind as it began to escalate? Can you get me to the doctor? A few minutes ago I could do these things with my hands, now I can’t. Was there anything going through your mind?
David Willick (12:27)
Yeah, at first what went through my mind was, know, did I pinch my neck as I was sleeping? Like, was it because it I felt fine, I was able to walk, I was able to move around, I had no paralysis at that time. In my face, I had no issues. And, you know, looking at it, you know, in 2020 hindsight, it was the beginning of the stroke, it wasn’t an actual stroke yet.
So it was a blood flow restriction. And so I was able to still move. ⁓ But it was, some blood was still getting through. It hadn’t fully ⁓ blocked yet.
Bill Gasiamis (13:13)
Okay, ambulance turns up. ⁓
David Willick (13:16)
No, we actually, we were living in a very remote area. And so we didn’t call the ambulance. And this is where the story takes another turn for the worst. And so we didn’t call the ambulance because I still at this point thought it was just a pinched nerve or something like that. so anyway, so we, my wife drove me to the nearby hospital, which was about maybe a 35 minute drive.
But keep in mind, this is very remote, very almost primitive type of hospital. They were understaffed at this particular hospital. And they had substituted ⁓ the triage nurse with a ⁓ PSW, so just a personal support worker not trained in nursing or whatever.
And after this all happened, I had filed a formal complaint with the hospital and then I was able to get the report. And ⁓ what I learned from the report, didn’t know at the time, but she, the triage nurse, clicked the wrong button on her mouse. Instead of highest priority, she clicked lowest priority. And so I sat there for two and a half, three hours waiting
to be treated in the emergency room. And we kept going up to the nurse every 15, 20 minutes to the PSW. You know, some, this isn’t right. Something’s not right. Other people are coming in and out, other people. Anyway, so when I finally got to see the doctor, the doctor recognized the signs right away and ⁓ he ordered what they call a hot ambulance. So lights and sirens.
all the way to a larger center where they could confirm what type of stroke it was, ⁓ what was happening. So they didn’t have a CT scanner at the small remote hospital that we went to, but he needed the CT scan. I said, just give me the, the, the clock buster drug, ⁓ TPA. And he says, listen, if you’re having a hemorrhagic stroke, this is going to kill you. So I can’t just give it to
And so, but we’ll try to get you there as fast as possible. So guess what happened? I actually, ⁓ through the rural roads and bumping and grinding through in the ambulance on the way to the hospital, I had the stroke in the ambulance. So this is when the blood flow was completely ⁓ stopped to that portion of my brain. So it was the frontal lobe, right side.
⁓ And so by the time when my wife dropped me off at the small hospital and they told her not even, don’t even try to follow the ambulance because we’re going to be going full speed. So when she got and saw me at the larger center, she said, it was unbelievable. It was night and day. My face on the left side was completely drooped. ⁓ I had mobility issues on my left side.
You know, I was significantly worse because the stroke had occurred in the ambulance on the way. I had no sensation whatsoever on my left side. ⁓ The ambulance attendant that was with me, ⁓ you know, had this device. It looked like a sharpened pencil and he was sticking it at various different parts of my left side and I had no feeling whatsoever.
Initial Reactions and MiscommunicationBill Gasiamis (17:00)
Yeah. Wow, man. I’ve been through all of those tests and all of those scary moments waiting for somebody to take action, to do something. Both from my perspective, I’ve done that to myself by delaying going to the hospital and also then after having an incident while at a hospital, ⁓ sitting on the chair in
⁓ emergency and waiting for somebody to see you is a difficult time. It is such a difficult time. ⁓ Were you, did you have any thoughts, any kind of like this can’t be happening moment? you, were you cognitively there enough to be able to do that?
David Willick (17:55)
Sorry, you froze there for a minute, Bill. Just repeat the question.
Bill Gasiamis (17:58)
Okay.
Yeah. Did you have any, this can’t be happening ⁓ thoughts in your head?
David Willick (18:07)
Yeah, I was floored. just, this can’t be happening. What the heck is going on? And then I’m negotiating at the larger center of, know, give me, give me TPA, give me the clot buster. And they said no, because, and of course it’s a completely different set of doctors. They said no, because you had this in the night and it was more than four hour window. And I said, no, no, I didn’t.
I said there was a restriction. I wasn’t like this. This only happened a half an hour ago. ⁓ But they wouldn’t give it to me. And so there was a little bit of miscommunication between the smaller center and the bigger center. But yeah, so it was disbelief. was how could this be happening? I have a healthy lifestyle. The only risk factor I had for a stroke was stress. ⁓ And everything else was ⁓ I didn’t have.
Bill Gasiamis (19:05)
Yeah. What were you afraid of most at the beginning?
David Willick (19:09)
deficits, right? ⁓ My ability to losing the ability to walk or to use my my hands, you know, physical impairments, cognitive impairments. I didn’t think of cognitive impairments back then. And when it first happened, I was just more focused on I don’t want to be left with any any physical deficits.
Bill Gasiamis (19:38)
Yeah, that’s fair enough. That’s probably how you recognize somebody that’s had a stroke. If you say physical deficits, it makes it quite obvious that person like that has had some kind of a neurological situation. ⁓ but then there’s the invisible deficits as well, which, you know, plague people after a stroke. who was it that first helped you make sense of what had happened? Were, did that take a little bit of time or?
How did you wrap your head around the situation that you found yourself in now?
David Willick (20:14)
Yeah, so ⁓ I was in the hospital for six days and getting CT scans and MRIs and meeting with the neurologist and the doctors there. And I was in the stroke ward, so there was other peers. ⁓ And then there was the ⁓ physical therapy and occupational therapy. ⁓
sessions that I would have. And so I guess the, you know, everybody was pleasant and nice, but then, you know, working with the neurologist at the hospital, I guess he was more the realist. And they said, Listen, sir, like, you know, I was a little bit making light of this, you know, it was, you know, I’m just gonna bounce back and I’m gonna be fine because the the
The loss of feeling and the complete loss of feeling on my left side only lasted, I would say, for about 36 hours. And then the feeling came back. But my deficit was fine motor skills ⁓ with my left hand. and so
I thought, you know, just another day or so and I’m going to get all those back, right? And so that’s my philosophy at the time. And then it wasn’t until meeting with the neurologist at the hospital that put it in perspective. And they said, he said, listen, this was not a small stroke. You are going to have deficits. And he said that on a scale of one to 10, this was about a 5.5.
Bill Gasiamis (22:07)
Thanks
David Willick (22:09)
So
he said, you’re awfully lucky that this fine motor skill is your only physical deficit, but I guarantee you there’s gonna be deficits from this. And he was right. He was right. But I was incredibly determined, determined to, ⁓ had almost like a perfect life beforehand, right? Everything was going well.
you know, perfectly and all this and I was determined to get back to my near perfect life as fast as I possibly could. So the occupational therapist, they showed me where the self help table was. ⁓ And when I wasn’t in my room, I was ⁓ I was at the self help table going through all these things. So I would have the formal ⁓ occupational therapy for
with a therapist for an hour a day, but I would work at the self-help table for two to three hours before my session and two to three hours after the session. Like what else do you do? You’re in the hospital, you’re locked down, right? So I was always at that table and working through that, which really helped.
Post-Stroke Fatigue and Recovery ChallengesBill Gasiamis (23:28)
That’s exactly my point, the theory as well. was in rehab. My left side was numb. I had to learn how to walk again, use my left side ⁓ motor skills were off. ⁓ The muscles in my leg were weaker or didn’t weren’t activating so they, my knee kept dropping. I couldn’t stand up and, but I was experiencing fatigue, a lot of fatigue and
I’d go to rehab, we’d do the hour in the rehab hospital for whatever day that was. Sometimes it was in the pool, sometimes it was in the gym, sometimes it was playing video games. And then I would come back and have a bit of a nap or a rest and kind of recuperate. But then there might be some time, quite a lot of time between the next session. So I would imagine, I would meditate and imagine myself walking again.
I would imagine my hand working again. And I imagined it doing those tasks perfectly, as if it was doing them before the deficit. But it wasn’t, in reality, it wasn’t doing it perfectly, but in my mind, I was running the program for perfection of the walk and using the arm, so that the neurons that are firing off in my head
⁓ then hopefully have something to remember and recognize when I’m going through the physical part of the recovery. And then I was watching YouTube videos of people ⁓ and neuroplasticity and about stroke recovery and about all this kind of stuff. And I was just trying to find as many different ⁓ resources to just complete the
recovery picture, even though it was only an hour or two a day, physically, it was maybe six or seven hours in total because the rest of it included all these other little bits and pieces. And I think it helped tremendously because instead of just sitting there being bored, it made me feel like I was contributing to the recovery more and more. And that was what I think got me through the one.
probably the five weeks that I spent in rehab.
David Willick (25:59)
And that’s awesome. And that’s along the lines of what I was doing as well, just really pushing the envelope to, to visualize yourself, you know, back. ⁓ There was a, I’m an engineer. so there was this, you know, rector set toy type of thing at the occupational therapy. And I was, I was just so focused on
you know, these small nuts and bolts and being able to do this again, because I like tinkering with machines and, know, on the side and, and it was so important to me to have that back to, to not lose that and what I used to do. And my, manager sent me this book and it was called my stroke of insight. And it’s a very, yeah, exactly. And, and I, I found that.
Bill Gasiamis (26:52)
You’re popular.
Post-Stroke Fatigue – Sensory Overload and SensitivityDavid Willick (26:59)
fascinating and it was very helpful for me to read through that and and you know it taught me a lot and it also taught me just you know when your body says rest ⁓ rest and and I had tremendous amount of fatigue and so when people would look at me they would say well you you look normal you know you don’t have that deficit but they didn’t realize how hard it was and how much I was struggling and and actually
And during the first, I would say two months after getting out of the hospital, had two periods of 48 hours where I slept for about 44 of the 48 hours. I would wake up and maybe have a little bit of food. And then I would look at my wife and I’d say, you know what?
Bill Gasiamis (27:47)
tomorrow.
David Willick (27:58)
I feel really tired again. And then I was asleep for like another 10 hours and get up for 10 minutes. then, and then, you know, we’ve, my wife phoned the hospital and she said, is this normal? And said, just let them get as much rest as, as, as he needs. it has, it was almost like my brain became like an infant again. And when you’re learning so much and you’re trying to rebuild so much,
you require a lot more sleep. And so the fatigue, yeah.
Bill Gasiamis (28:29)
It is,
I was going to say it’s a great analogy. Your brain is becoming an infant again and it needs to heal and recover. And sleep is one of the most critical things that you need for recovery. Without sleep, then those neuronal structures cannot, ⁓ they can’t become stable and they can’t stay attached and ⁓ they just disappear. So you need…
as one of the key ingredients to the physical recovery, you need to sleep. That’s the next stage of the physical recovery so that those neuronal patterns can stick.
David Willick (29:13)
Yeah, absolutely. And, and so I’ve respected that and I, and I never, I never tried to force myself to, ⁓ to stay awake when my body was telling me I needed to sleep. another thing that was really, you know, weird or, or interesting in my case, every stroke is different. But when my, when my sensation came back on my left side,
it came back in a hyper way. And so if I say before the stroke, was a hundred percent. And then, you know, at the first 36 hours or so it was zero. When it did come back, it came back like 125%. And so it took me six months to have a warm shower again, because even warm water felt scalding to my skin.
absolutely scalding. And so it was it was almost like a heightened sensitivity on the on surface of my skin. It was really
Bill Gasiamis (30:20)
What about cold?
I have the same issue on my left side, over sensitive. ⁓ The wind on catching the hair on my arm hurts. The hot water, I don’t know whether it’s warm enough or cold enough. I can never tell because half of my body’s feeling good. The other half’s not feeling the best. Sometimes I perspire on just half of my face or body.
Do you have similar kinds of things as well?
David Willick (30:53)
No, for some reason it wasn’t the cold so much and it was the heat. And so I would take ice showers only because anything warm was scalding on my left side. And so I got used to just taking ⁓ cold showers, but I never had that, ⁓ the extreme, like my right side just seemed to adapt.
you know, be okay with the cold. wasn’t like I was, I was shivering. It was more sensation. The heat was, it was a big deal.
Bill Gasiamis (31:30)
What was the hardest challenge to overcome physically or emotionally?
Emotional and Physical Challenges
David Willick (31:35)
⁓ It was the exhaustion ⁓ associated with complicated tasks. It took me a year to learn how to drive an automobile again.
And not to say that I couldn’t do it, I could do it. But driving for five minutes or 10 minutes would cause me to need to sleep for hours. All right? And the best way to describe it is when I was learning how to drive again, and
all I’ve driving for decades and all the normal ⁓ driving ⁓ that had become ⁓ automatic to me is almost like my automatic part of my brain was no longer there. That’s where the stroke was. And so everything became very manual.
And let me describe it with a bit of an analogy. So when I first started driving again, I lived in a small remote area with only one stoplight in the whole town. And so as I’m approaching the stoplight and the light is red, there’s a truck in front of me. And they say, OK, my brain’s telling me, OK, I must apply the brakes. But there’s a car behind me. But I can’t apply the brakes too quickly.
Otherwise I’m going to get rear ended. If I apply the brakes not hard enough, then I’m going to hit the end of that truck. So at what point in time and, that mechanical thought process was there on every observation. And so to this day, you know, three and a bit years later, driving in acclimate, ⁓ weather conditions still
makes me more exhausted than anything else, right? So if it’s raining, if it’s dark, if it’s snowing and I’m driving and the noise associated with the car, I had a real issue with noise. And ⁓ for the first six months, I had to wear noise canceling headphones and sunglasses even inside the house because any noise was just… ⁓
It was just mind boggling. And I remember going to a restaurant the first time after a stroke and I was starving. I was really hungry and I went out with my wife and our two closest friends. it was like my brain was trying to understand everything that was happening in the room. Every single conversation at every single table, I was trying to understand and I was trying to just
And I couldn’t shut out background noise. And I was just trying to understand it. And so after about 35, 40 minutes, I didn’t even touch my meal. I said, I can’t do it. I’m too tired. I need to leave. so I had to leave. That’s what it was, exactly.
From Post-Stroke Fatigue To The Journey of Recovery
Bill Gasiamis (35:05)
It’s very common and I still get sensory overload. Right now in front of me, there’s a bright light. You can see it reflecting on my hand. And it’s necessary because of, you know, what you hear about recording videos and all that. There’s certain things you have to do to make sure that the lighting is amazing and you look fantastic. And on this side, there’s another bright light. Exactly. There you go. There’s that bright light there. And the challenge with these lights is that they are the widest of the white.
lights and in that spectrum, even on a cloudy day where the sun is not appearing, but it kind of is causing that real bright sort of experience, I get headaches. So I have to record a podcast interview every time with two lights that are going to cause me mild discomfort while I’m discussing it and then a little bit of time to recover afterwards. I’ve got some
noise-cancelling headphones, I take them on the airplane, I take ⁓ them if I go to a concert or somewhere loud, and I just put them in just so that I can just get a little bit of chill time and I can enjoy the space because I used to avoid going to those events because it was too hard. So that helps. it’s one of the things that has sort of lasted the longest for me is that light.
sound sensitivity, but it is lesser than before. So it doesn’t happen as often, except if it’s a cloudy day. If it’s a cloudy day, it’s happening all day. And there have been moments where in the house as well, I’ll have my sunglasses on during the day. And at night, there’s no lights above my head. It’s all dark above my head and we just have night lights in the corner. So very common experience.
one of the ones that is the most manageable for me. It’s one of the ones that I can manage quite as a pair of sunglasses, thankfully for the noise canceling earphones and then ⁓ changing the lighting.
David Willick (37:20)
Right. Yeah, no, it’s, it’s, it’s hard to describe to anybody that hasn’t been through the experience. To this day, I still have difficulty listening, listening to some music, especially if it’s, it’s like music in the car. I can’t do it yet. And ⁓ it’s just because there’s too much going on. I remember my first Christmas, post stroke my first Christmas.
And my daughter had background music, Christmas music on in the background. And the chatter in the foreground and the music in the background was too much. So I had to ask her to shut that off. But I’m better now. I’m better, but it still adds an element of exhaustion.
Bill Gasiamis (38:10)
If I’m in the car early in the morning and the music is off, it’s way, way better and there’s no radio. It’s way, better than if it was on. And I’ve just become more recently aware that, the radio is not on and there’s no additional noise. And that’s a better experience while I’m driving and focusing on the road. So that happens quite often now. As the day progresses and
I think, you know, my brain comes online or I wake up more or I’m not sure what the word is. It gets a little better. But then if I’ve had a big day and then I’m tired at the end of the day, then it’s better to have it off. ⁓ That’s fascinating. Did you have a moment when things clicked for you and you kind of felt, my gosh, I’ve improved here. I’ve got better here. I found myself in a situation where I wasn’t the most aware of my…
improvements somebody else had to tell me and at one point in the communication recovery ⁓ speaking and that the my psychologist was the one who brought it to my attention did you have ⁓ a aha moment like that
David Willick (39:25)
I did actually. ⁓ what I did, again, being a scientific person, I kept a journal. And I kept a journal of what I was doing today and what worked, what didn’t work. ⁓ And then because I was dealing with a little bit of depression at the time as well. ⁓
And I found what was helpful for me was just to record and keep a daily journal on what I actually did do. And so then I would look over the list at the end of the week and I’d think, you know what? This stuff is, you know, I’ve definitely improved. And, you know, at the very beginning, just little things.
Like if something went wrong, it would send me down a downward spiral, sometimes for an hour, sometimes for two days. And, and I just, it was hard to get out of that. Say for example, I, I lost a key and I know I’m going to find this key and I know it’s somewhere in the house, but, I lost it. And so a downward spiral and, and that, I guess the aha moment.
was when I started reviewing things and realized like, you know, these little things that used to trip me up all the time, you know, they’re not tripping me up anymore and I’m able to do it. And I was able to be less bothered by this, which was helpful.
The Impact of Memory LossBill Gasiamis (41:13)
Yeah, had moments where…
I went to the, when I first started driving again, I went to the local shopping mall, what we call the shopping center. And I parked the car and then went and picked up the things I needed to pick up for the dinner, the dinner that night. And then I went to find the car and I couldn’t find the car. I had no idea where the car was. And I was walking around the car park.
for ages and ages. And it rang my brother at one point. I said, I think he rang me. What are you doing? What are you up to? I said, I’ve just gone to the shops and I went and bought some things and I’m looking for my car. I have no idea where the car is. Just cannot find it. I was more, it was more a what the heck is going on moment. Like it was more me going, this is so strange. This is so bizarre.
I have no recollection of where I parked the car, which level it might be on, which wing of the shopping center it be on, I had idea and just kept walking around. And then eventually, I don’t know whether I fluked it or I just stumbled on it what happened, but I had the, oh, okay, there it is. And I got in the car and I could, it wasn’t an hour. I don’t think I was looking for an hour, but it was way longer than say 30 minutes. And it was just so.
interesting for it to be gone. And when my memory came back,
I couldn’t remember, for example, who came to visit me at some point. And even ⁓ about a year ago, I bumped into a friend of mine who said, I came to visit you when we had lunch, et cetera. And I saw that is not in my memory at all. Like, I believe you, but I just cannot recall it. And then that started to get better and I started to remember ⁓ things and I kind of felt much better about it.
and also speaking. So I would start a sentence and then forget in the middle of the sentence what I was talking about. And my wife would go, where’s the rest of the sentence? And I’m like, I don’t know, it’s gone. I’ve got nothing to say.
David Willick (43:35)
interesting. You know, I had I didn’t have those exact issues, but I had an issue with repeating myself. And I would, I would forget completely forget that I had just explained something to somebody. And then, you know, 30 minutes would go by and then I would, I would explain it all over again, or I would ask the question all over again is that what we just covered this, you know,
30 minutes ago as it changed and I said, we did, you know, I didn’t have any recollection of the prior conversation. So, you know, the repeating myself got better, you know, over time, but I didn’t recognize it.
Bill Gasiamis (44:21)
Mm-hmm. Yeah, that’s the thing. That’s the part of it. You don’t know what you don’t know because Yeah, so it’s not there anymore the same way that it was before a little bit earlier. You mentioned depression 33 % of people who have a stroke roughly will experience depression of some kind Was your depression kind of based around your
the changes that had occurred to you and how you were dealing with them. Was it a ⁓ mental health type issue that you, something that you couldn’t grapple with? Do you know what was at the bottom of that?
David Willick (45:02)
think it was just a kind of a temporary, a temporary.
event that or that I went through for a few months where, little tiny things like just any little, I would have little sparks or little, little events that would happen. mentioned the key that I lost and there was a couple of other things and I, and I think I would just get so down on myself for being injured. And that was essentially
the source of the depression. And so I was never clinically diagnosed as depressed. I never had to take medication for depression, ⁓ but it was just something I had to be aware of. And I’m so lucky to have a loving family and a loving wife that ⁓ was with me every step of the way and ⁓ really guiding me and helping me through this.
you know, highlighting the things that I could do now that I couldn’t do yesterday type of thing. And another thing that was really difficult for me was, you know, again, as a scientific person, I, if you break your arm or your break a ball, then you know that, you know, week, week one, you’re going to do this and week two, you’re going to do this and week three, you know, by end of week six, maybe week seven, you’re going to be all set, right? What
what I couldn’t understand and I had no, I couldn’t even fathom was the nonlinear recovery of this. You you’d have two or three days in a row where, my God, I’m better today than I was yesterday and I’m better, you know, I’m going to be better tomorrow. And then by next week, I’m going to be really, you know, pretty good. And that linear recovery was completely wrong. My recovery was completely nonlinear.
It was like looking at a 30 year chart of a stock market. Yeah, eventually, yes, you you’re going in the right direction. But boy, boy, there’s some rough days down. That’s for sure.
Bill Gasiamis (47:22)
Yeah, that is a great analogy. those, ⁓ that little, those moments of sort of feeling depressed and down, did you ever feel like giving up? Did they get to that? How ⁓ deep were
David Willick (47:36)
never
really got to that level. No, I never really got to that level, but there was a few times where it would get close and then I would just kind of talk to myself and just say, okay, just take a deep breath and one day at a time type of thing, one day at a time. But ⁓ it was a few dark days. But like I said, with a good support network around, was good. ⁓
Bill Gasiamis (48:02)
But,
⁓ so how have you changed as a person since the stroke?
Shifting Perspectives on LifeDavid Willick (48:10)
Well, I guess I’m, I’m a lot more appreciative of health. You know, there’s always that, you know, you, your focus is on, you know, career or your focus is on ⁓ building wealth and all of this stuff. And you know, building, you know, going higher and going faster, you know, doing this. Now I’m
I’m not so worried about those things. And ⁓ I’m very fortunate to ⁓ work for an awesome company. And ⁓ so I took six months of short-term disability, and then I did an additional one year of long-term disability.
And then I went back to work in a part-time basis and I had a gradual return to work plan. And so it started off at like six hours a week and worked my way back to full time over the course of I’d say eight weeks. And when I hit 20 hours per week, I didn’t think I was going to make it. I really didn’t.
because I needed morning and afternoon naps at that point. so, you know, and anyway, and I eventually pushed through it and I used the analogy of a ceiling. so when I was at that, you know, 20 hour week, I was banging up against the ceiling.
and then I was resting, listening to my body and resting. And then I would bang and it would hit the ceiling again and then resting and then bang, hit the ceiling again and then resting. And then over the course of multiple weeks, my wife and I looked at each other and said, my God, your ceiling is so much higher now than it used to be. So.
even though it was painful, even though it was slow, I think for me and in my case, like I said, every stroke is unique. In my case, going back to work was one of the best things that I could have done. And it really pushed my recovery from I would say 65 % all the way up to like 95%.
And then I guess this is long way to answer your question in that, do I aspire to be, you know, the CEO of the company? Absolutely not. Absolutely not. So, you know, I’m kind of in the last role of my career phase right now, and I have no aspirations for further career growth. My whole point now is knowledge transfer.
And how can I take 35 years of industry experience, 35 plus years of working with people? And how can I mentor younger people and transfer as much knowledge as I can for the relatively short time that I’m going to be still working?
The Importance of MentorshipBill Gasiamis (51:50)
I love it. That is sensational. And then long-term, you can write a book.
David Willick (51:57)
Perhaps, or maybe start a podcast.
Bill Gasiamis (52:00)
Wow. Even better because I am not an engineer and I could come on the engineering podcast and talk about stroke just because I know you and that would be fantastic.
David Willick (52:14)
It sounds like a great collaboration for sure.
Bill Gasiamis (52:17)
It would be. And that’s the beauty about podcasts is actually, ⁓ it’s a forever. It’s evergreen, right? So you record the episode, you put it on YouTube job done. You don’t have to worry about it anymore. And you don’t have to worry whether anyone watches it or not. You don’t have to worry what people think about it or not. And if you want to, you can interact with people and all that type of stuff. ⁓ it is one of the best ways to get a deep.
conversation occurring about a topic that you’re interested in and the other person is interested in. And now we have the means. We don’t need a studio. You can just do it from your bedroom. This is a little studio. It’s in my garden and it’s like a garden shed and it’s painted black and it has some sound proofing type of acoustical kind of treatment. And that’s about it. And a $400 microphone and a computer and you’re done.
And now if you edit it, well then you can learn about editing. Now you’re gonna have time on your hands and that’s gonna be perfect. So there’s this, ⁓ and even for me, I was a painting contract, I still am, still have a painting company. And the boys are working at the moment and things are getting managed and I’m recording an episode. But what this sort of shift in technology has enabled me to do.
is find new opportunities, new skills, ⁓ develop new skills and meet people from all around the world, create a community that was never there before, record 370 episodes. And then as a result of that, a book, speak publicly about the topic that I’ve become interested in. And it’s all doable simply because you no longer need to get into the news ⁓ studio. You no longer need to have ⁓
a radio ⁓ contract. You can just be you and you can get it out there and it’s very, very rewarding. It is just amazing how rewarding it can be. So I would encourage you to contemplate all of those opportunities. And now what’s great about ⁓ this is that
If you need help to do it, you can reach out to so many different people to find help as to what you’re lacking or what you’re missing or what need to do. And YouTube is just full of helpful videos about lighting, about recording equipment, about sound, about settings, everything you need to know. there’s…
David Willick (54:56)
YouTube is amazing. I use it in so many things. If I have to rip something apart that I haven’t done before, first thing I do is watch a couple of YouTube videos. It’s amazing.
Bill Gasiamis (55:06)
Yeah.
It was the beginning of my recovery YouTube and it’s and it’s continuing to be because now if I’m interested in philosophy, if I’m interested in any topic that kind of comes across my desk, then I can just dive, dive deeply into it. And from the comfort of my own home, I don’t have to be near somebody to
benefit from hearing them speak about a particular topic. It’s great. And I don’t do well reading, although I like reading. It’s a bit of a struggle. ⁓ So listening makes it way, better.
David Willick (55:47)
Right. Absolutely. So do you listen to eBooks as opposed to reading them? See, I’m still okay with, you know, reading and writing is not an issue. And for me, it’s ⁓ like yesterday, had an incredibly busy day. And, you know, I commuted an hour into the largest city and had multiple meetings with multiple different people.
There was a evening ⁓ social hour and all that stuff and ⁓ a late night and then you come home and it’s like, okay, I’m feeling it today. it’s a pushed it a little bit, but once again, it’s, you know, relatively speaking, it’s very minor and ⁓ it’s just ⁓ something to be aware of. It’s the new me, right?
It’s, you know, again, I’m thankful that, ⁓ you know, that’s, I’m able to do so much and I’m just ⁓ self-aware that when I do push it one day, I make sure that my next day is relatively light.
Bill Gasiamis (57:04)
I love that self aware. I’m the same in that if I have a big Saturday, then Sunday is there’s nothing booked. So still after all the time that I’ve been going through this, you know, since 2012, I cannot have two big days in a row because then the rest of the week becomes really terrible. and then work piles up, then I can’t get stuff done. Then I can’t catch up. And then it’s just a terrible cycle. So
⁓ It’s really important. So if somebody was ⁓ Just coming across this episode, they’ve just had a stroke, what would you like to say to them?
Encouragement for New SurvivorsDavid Willick (57:50)
I would like to say that it’s going to be okay. You know, it’s, you can get better and will you ever be a hundred percent again? Maybe, maybe not, but don’t get discouraged. ⁓ Work at it every day and keep pushing and you’ll see over time.
that you get better and better. You have to know when to push and you have to know when to ⁓ relax and to allow your body to recover and sleep. And that was the hardest thing for me. And it was like, when do I push and when do I relax? And there’s no magic formula.
You have to do it the way you feel. And so for me, I like pushing and then seeing me hit the ceiling and then recover. And then the next day, the ceiling is higher. So for those people that had just had this, there’s hope. There’s ⁓ a future.
you know what, sometimes my outlook is better now than it was pre-stroke, you know, I, you know, I was focused on, you know, climbing higher in that social and in that corporate ladder. And, and now that’s not important to me anymore. And I’m perfectly comfortable, you know, trying to, guess, just mentor other people to, to, you know, take that knowledge. And so you can pivot.
and still get fulfillment and very good satisfaction out of life, ⁓ even though it’s slightly different than it used to be. Another thing for me is I use exercise and I used exercise through my recovery. And, you know, it’s easy to sit on a chair and just sit there for hour and hour. But if I do that for a couple of days in a row, what ends up happening is I start losing ⁓
a little bit of mobility in my left side. And ⁓ so too many days of ⁓ not walking or being, you know, know, stuck in a chair. And so I would say get up and move because then I start walking like I’m intoxicated and staggering a little bit. so I try to get out there and I try to walk, ⁓ you know, at
you know, a good portion every day and get a little exercise. When the weather is not cooperative with that, I have an elliptical in the basement where I could jump on the elliptical for a little while or a treadmill and, you know, just have a walk indoors. And I think that’s really important as well.
Bill Gasiamis (1:01:03)
Do you ever have the, do you ever walk next to somebody, your wife or somebody you know, and find yourself sort of running into them? I do it all the time with my wife when we’re walking, especially if she’s walking on my left.
David Willick (1:01:17)
Yes, I do that. And my wife is very aware of everything. And I also have a voice. And when I first had the stroke, and the best way to describe this is if you had a loose tooth and you’re afraid to swallow it, and you start talking like, you know,
And as soon as I start talking as if I’m trying not to swallow a loose tooth, my wife, 100%, she knows, okay, you’ve pushed it too far. That’s my first sign of being tired, right? And then if I push past that or if I’m not talking, if I start staggering while I’m walking, ⁓ she’ll know, okay, I know you’re pushing it, you’re tired. ⁓
And so see the signs, know your own signs and just respect those signs. And I guess, you know, going back as well, what really helped me was journaling. And if you’ve just had a stroke and you think it’s so, you you’re in despair and whatnot, you know, if you journal and keep a really good track of what you’re doing and you will see that over time.
⁓ You’re doing more and more and you’re having less and less issues. so, and when you’re having a bad day and you’re feeling, you know, you know, it’s, the despair is just too much. Just take a look at your journal and take a look at how far you’ve come and it’ll pick you up.
Bill Gasiamis (1:03:04)
Yeah, that’s a great, ⁓ that’s great advice. So what is there? What do you believe about healing or growth that you perhaps didn’t believe before?
David Willick (1:03:18)
I think that it’s multi-dimensional. so healing and growth, the definition of it today for me is quite a bit different than the definition that would have been three, four years ago before stroke. So I’m more appreciative of the little things. ⁓ And I think I would classify some positive growth
⁓ not just ⁓ in dollars and cents, but positive growth ⁓ is all about mindset now and it’s less about monetary things. And so I like to say that, you know, if you’re thrown a situation and the situation doesn’t change, that’s the situation, the mindset that you take at that situation could lead you way off there.
or way off the other direction. And even though the situation is exactly the same, the mindset that you have looking at that situation could make you really angry, really sad, really depressed, or it could make you maybe appreciative. It could make you pivot. It could make you, you know, perhaps happy, but…
nothing has changed in the situation is on your mindset. And I didn’t really fully understand that prior to stroke, but I guess I’ve had time to reflect and I’ve had time to, to really do some self awareness learning. And, and now I applied that mindset shift more now than I ever have before.
Bill Gasiamis (1:05:11)
One of the cool things that I was taught to ask was, is this serving me right now?
And if you’ve got one of those bad mindset moments that you aren’t aware of and you’re in the spiral, the negative one, the terrible one, and you have the self awareness just to say, is this serving me right now? That’s usually something that can support shifting the mindset in another direction. I’ve definitely done that and found myself being able to decrease the amount of time that I’m in that loop of negativity perhaps, and then change it so that.
⁓ that is less impactful and is it serving me kind of makes me.
David Willick (1:05:57)
wish.
Bill Gasiamis (1:05:58)
It’s a meta position. You have to kind of observe yourself in that situation as you’re looping in the negative way. And then from there, you can see that doesn’t look good. Like I’ve got to stop that. I’ve got to change and shift and get into a mindset that at least is neutral, if not serving me.
David Willick (1:06:21)
Exactly. And it’s just making you more injured or in my case, when I spiral, you know, it’s only harming me, you know, and so I chose to avoid that before it gets too, ⁓ too severe, right? And it’s not easy. It, it takes a lot of practice and it takes a lot of, ⁓ you know, internal coaching, but
you know, once you once you’re able to recognize that first step towards that negative side, and then you take a step back, it’s easier than trying to pull yourself back when you’ve been in it for minutes or hours, you know,
Bill Gasiamis (1:07:08)
Yeah. ⁓ what’s one lesson that stroke has taught you that most people might not understand.
David Willick (1:07:19)
Patience, perseverance, think is, know, buzzwords perhaps before, but nowadays, know, that perseverance, ⁓ you know, we can overcome, the human brain is just, is so amazing and it’s so resilient and just,
to keep going and to have that perseverance to go. And I think that’s one thing I did learn from this experience. And so I remember my nurses and the occupational therapists that I had in the hospital and they said they’d never met a more motivated patient than me. And it’s something about that motivation, that determination, that perseverance
that don’t accept. And I remember going to my family doctor after this and the family doctor, she said something that really infuriated me. She goes, just accept the fact that this is the way you are. This is your new reality. And I didn’t, I was nowhere near in my recovery. And if I had listened to that advice, you know, I would still be stuck at that 60, 65 % threshold.
and nowhere near the 95, 98 % threshold that I’m at now. So perseverance is one thing and determination. those are things that I always had, but I learned. I learned a lot more about myself and about those things that make it really important.
Bill Gasiamis (1:09:09)
Yeah, that new normal thing is really frustrating. I’ve heard it a few times as well. ⁓ And I also heard it during lockdown here in Melbourne, in Australia, during COVID, we had nearly two years of lockdown. saying new normal was such a triggering thing because it came from a, no, you shouldn’t expect anymore. And that’s kind of what I, when somebody said that to me in the past, you know, through stroke recovery,
in the future, anytime I’ve heard that, it’s always been, you shouldn’t expect anymore. And it’s like, rest on your laurels, do less, don’t make any effort. And so what are you talking about, new normal? As if we’re gonna just sit now, we’re gonna, this is gonna be the peak of our existence, we’re just gonna accept everything and then not try for better. And that was really frustrating. And why I don’t do things normally.
You know how there’s some people who do things to prove other people wrong? I’m not that guy. So those types of comments really upset me to hear them from other people because I’m on the journey to achieving, overcoming, recovering, all those things. And what I don’t need is somebody messing with my journey. I don’t want you messing with it. If you’re enhancing it, you’re welcome. You’re on board. Let’s do this together. If you’re not,
Keep quiet and stay in the corner. Don’t come near me.
David Willick (1:10:38)
Yeah, exactly. You know what exactly right life’s too short. And, you know, you can pick and choose who you want to be around you want to be dragged down by by people and or do you want to be lifted up and you know, so we we like to socialize with positive people. And, you know, we like to avoid those people that are always dragging you down, right. So it’s just
And you just, I guess it’s opened my eyes to, we have choices. You know, we have many choices in our life. We have choices about our careers. We have choices about our friends. We have choices about the social things that we can do. And it’s okay to say no, it really is. And, you know, I like to push myself a little bit outside my comfort zone. And, and I think that’s okay. ⁓ As long as it doesn’t go too far.
but sometimes if something’s not a fit or if you know it’s not gonna end well, then it’s okay to say no.
Conclusion and ReflectionsBill Gasiamis (1:11:46)
Yeah, I agree. And on that note, David, I really appreciate you reaching out and joining me on the podcast. enjoyed our conversation. Thank you so much.
David Willick (1:11:55)
Thank you for having me, Bill. It’s been my pleasure. Thank you.
Bill Gasiamis (1:11:59)
Well, thanks for tuning into my conversation with David Willick. I hope his honesty about invisible fatigue, sensory overload and redefining success gives you something to hold onto in your own recovery. Remember to subscribe on YouTube, leave a review on your favorite podcast platform and share this episode with someone who needs it. These simple actions help push this content out to survivors who are feeling lost, confused or misunderstood. And you never know.
who might hear exactly what they needed today. If you want to go deeper, remember to check out my book, The Unexpected Way That a Stroke Became the Best Thing That Happened. It’s my lived experience guide to post-traumatic growth after stroke. And if you are able to support the show and help me reach 1,000 episodes, visit Patreon at patreon.com/recoveryafterstroke Remember to take the next step in your recovery, no matter how small it feels today. As always, see you in the next episode.
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed. All content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gassiamus.
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The post David Willick on Life with Invisible Fatigue After Stroke appeared first on Recovery After Stroke.
When life is full of business meetings, celebrations, and long weeks that blur into long weekends, it’s easy to ignore the quiet signals your body sends. For Jason Hellyer, a real estate professional who prided himself on working hard and playing harder, those signals became impossible to ignore the night he experienced an ischemic stroke.
A Lifetime of Overwork and OverindulgenceFor decades, Jason ran successful property and finance franchises across Queensland. He thrived on achievement, 90-hour weeks, long nights, and the social rituals of beer, smokes, and mateship. Like many Australians, he believed success meant constant motion.
“I lived a life of pleasure, worked hard, played hard,” he told me. “It was the Aussie way.”
Behind the scenes, his blood pressure regularly climbed above 210/110, but he brushed it off. “I felt normal,” he said. “No headaches, no warnings. That was just an ordinary day for me.”
The Night Everything ChangedAfter an evening out with his wife, Jason tried to get out of bed and couldn’t. His right arm went limp, his speech slurred, and his face drooped.
His wife, having watched her own mother experience a stroke two years earlier, recognised the signs immediately. Within ten minutes, she had him in the car and on the way to Sunshine Coast University Hospital.
Those minutes saved his life.
Doctors confirmed an ischemic stroke, caused by a blockage restricting blood flow to the brain. Jason’s business instincts kicked in: stay calm, accept the problem, and act. “Panicking wouldn’t help,” he said. “I just thought, what’s the best way to deal with this?”
Acceptance, Then ActionMany stroke survivors describe denial. Jason took a different path.
“I knew instantly everything had changed. I’d never drink again. Never smoke again. That decision was made within half an hour.”
That instant acceptance became the foundation of his recovery. He channelled the same focus once spent on business into his health, taking every recommendation seriously, and leaning on his wife’s calm guidance.
“Business teaches you: if there’s a problem, face it. Don’t pretend it’s not there.”
From Frustration to ProgressThe first weeks were filled with frustration, facial droop, weakness on his right side, and slurred speech. A self-described “constant singer,” Jason struggled most with losing his voice.
“I couldn’t sing in the car or around the house. My wife always said, ‘If you’re singing, you’re happy.’ I felt like I’d lost part of my identity.”
Through steady physiotherapy, speech practice, and daily walks, strength and clarity returned. The droop faded. His words grew sharp again. The business owner who once ran at 100 mph was learning to slow down, and in doing so, he started to heal.
The Power of Lifestyle ChangeThe stroke stripped Jason’s life down to essentials. What remained became sacred: his family, health, and peace of mind.
He quit alcohol and cigarettes immediately, lost 24 kilograms, and developed a daily routine around movement and mindfulness.
His mornings now begin before sunrise, cycling, stretching, or walking instead of nursing a hangover. He describes his new clarity as “crystal-clear focus, every day.”
“I used to think I was sharp at work. But I was foggy. I didn’t know what clear felt like until I stopped drinking.”
“It’s probably the best thing that ever happened to me because it made me change.”
— Jason Hellyer
Discovering Purpose Beyond WorkAfter years in real estate, Jason now works in the lifestyle and retirement sector, helping others plan peaceful futures, an irony not lost on him.
He and his wife recently bought a small farm near Dubbo, where they’re renovating a 110-year-old cottage. Their goal: a slower, healthier life surrounded by nature.
“It’s about choosing lifestyle over labels. I don’t care what car I drive anymore. I care about mornings, quiet, and the people I love.”
Paddling the Murray and Reclaiming Self-BeliefOnce Jason’s physical strength returned, he began testing his limits again, but this time for meaning, not ego.
He started cycling: 10 kilometres, then 25, then 50. Eventually, he completed a 700 km ride through the Pyrenees on the Camino de Santiago. The challenge reignited his belief in what was possible.
That led to an even bigger dream – paddling the entire length of the Murray River, Australia’s longest. Alone and self-sufficient, Jason joined a short list of only 500-odd people to complete the journey.
“It was my apology to my past self,” he said. “I wanted to prove I was capable and grateful to still be here.”
Family, Faith, and the Gift of ClarityJason’s six children were his anchor. The stroke made him see that being a father wasn’t just about providing; it was about presence.
“When it happened, I realised I’d have traded everything I owned just to have them in the room with me,” he said.
Today, he and his wife share early mornings, simple meals, and long conversations, things they used to rush past. “We used to chase what doesn’t matter,” he reflects. “Now, it’s peace over prestige.”
Jason’s Message to Stroke SurvivorsWhen asked what advice he’d give someone newly diagnosed, Jason didn’t hesitate:
“Choose the right mindset. It’s easy to feel defeated, but recovery starts with small goals one at a time. Recognise when you’re slipping, talk yourself around, and remember why you’re doing it.”
For some, that might mean physiotherapy milestones. For others, simply walking an extra block. Each step matters.
Key Takeaways Acceptance beats denial: Facing reality early gives recovery momentum. * Lifestyle matters: Quitting alcohol, losing weight, and staying active can reshape outcomes. * Mindset drives healing: A problem-solving attitude turns fear into focus. * Purpose sustains growth:* Transformation lasts when it’s anchored in gratitude and family.
Resources Mentioned Get The Unexpected Way That a Stroke Became the Best Thing That Happened* — Bill’s book on finding post-traumatic growth after stroke * Join the Recovery After Stroke Patreon community for survivor support, Q&As, and coaching access
Sponsor AcknowledgmentBefore we wrap up, a huge thank-you to Banksia Tech, proud distributors of the Hanson Rehab Glove by Syrebo, designed to help stroke survivors improve hand function at home, whether you’re early in recovery or years into it.
Final ThoughtsJason Hellyer’s story isn’t about loss; it’s about rediscovery. His stroke forced a hard reset, stripping away noise until only what mattered remained.
Through discipline, humility, and purpose, he shows that overcoming ischemic stroke through lifestyle change isn’t just possible – it can open the door to a richer, calmer life.
This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
Jason Hellyer on Finding Strength and Clarity After an Ischemic StrokeAfter an ischemic stroke, Jason Hellyer transformed his life — quitting alcohol, losing weight, and finding peace through change.
Highlights:
00:00 Jason Hellyer’s Lifestyle Before Stroke
06:21 The Impact of Stroke on Jason’s Life
13:47 Acceptance in an Instant
26:24 Losing My Voice, Losing Myself
35:37 A Reality Check That Redefined What Matters
45:21 Overcoming Ischemic Stroke
52:37 Choosing the Right Mindset: Small Steps, Big Recovery
56:18 Finding Strength, Joy, and a New Identity After Stroke
Transcript:
Jason Hellyer’s Lifestyle Before Stroke
Bill Gasiamis 0:00
Before we dive into today’s inspiring story, I just want to thank everyone who has taken a moment to make this show possible. To all our Patreon supporters, your contributions now cover some of the hosting costs after more than 10 years of doing this solo, and to helping me keep producing content for stroke survivors who need guidance and hope. To everyone tuning in on Spotify, YouTube, Apple podcasts, thank you for commenting, reviewing and sharing, and to those of you who picked up my book The Unexpected Way That A Stroke Became The Best Thing That Happened.
Bill Gasiamis 0:32
You’re helping spread the message of post stroke growth now a big thank you also goes out to Banksia tech, proud distributors of the Hanson rehab glove right here by cerebo. This glove helps stroke survivors improve hand function at home, whether you’re early in recovery or years down the track, you’ll hear more about it later in this episode. All right, my guest today is Jason Hellyer, a Queensland real estate professional who built his life around work weekends and plenty of beers, until one night, everything changed.
Bill Gasiamis 1:04
Jason suffered an ischemic stroke that turned his entire world upside down. What followed was a total lifestyle transformation. He quit drinking and smoking overnight, lost 24 kilos and discovered a new sense of purpose. He’s living proof that sometimes the biggest setbacks can become the star of something better. Let’s jump in. Jason Hellyer. Welcome to the podcast.
Jason Hellyer 1:29
Thanks for having me, Bill.
Bill Gasiamis 1:31
G’day, mate.
Jason Hellyer 1:33
G’day.
Bill Gasiamis 1:34
I love it. Another Aussie. Tell me a little bit about what life was like before stroke.
Jason Hellyer 1:42
I lived a life of pleasure, worked hard, played hard. So I Yeah, it was worked in the property industry. So it was always a, you know, the grind Monday to Friday, and on weekends, it was play up time, so many a beer and a celebration had often and for decades. So it was a, not a smart way to live, but it’s how it was, and that was part of the, I suppose, the year we grew up in. It’s just how we did it. You know, it was just worked during the week of play out on the weekends. And I said I got a gold medal in that dude.
Bill Gasiamis 2:24
That’s not too bad. I mean, if you can get a gold medal, but always in peak performance sort of sports, you need to know when to get out.
Jason Hellyer 2:36
That’s right, yeah. And I didn’t know no first one there, last to leave, always.
Bill Gasiamis 2:41
So what was your role? What type of role did you play in the property industry?
Jason Hellyer 2:46
So, I owned real estate franchises, and I also had finance franchises, and I also worked. Once I sold those, I moved back into working for a large company based on the Sunshine Coast, and did that for quite some time. And I think that role, when the responsibility of business was taken away from me, I didn’t have to be so on hand. So to speak, it allowed me to sort of a bit more freedom and play up a little bit more so to speak.
Bill Gasiamis 3:20
So what’s behind that whole I’m going to run through two businesses and have all these branches and all this stuff, like, what’s behind it from a like, psychological perspective? So, yeah, I want to try and understand, like, how do you go from being just a regular kid at school to building a career? That means that you’re working probably 90 100 hours a week on multiple businesses and tracking all this stuff. What is the purpose and point of it?
Jason Hellyer 3:49
I think it was the Australian brainwashed way that we have, that we believe that you need to go out there and succeed and buy and have all these assets and to build this and to be successful in everything you do, and that’s where that was the driver, at the end of the day, to prove people that prove to people that I could I was capable of these things. And I think about it often that that question, what you’ve asked, you know, why did I go so hard? And it was, I was always a sort of an overachiever.
Jason Hellyer 4:14
I mean, coming through school, I was always that was a very handy sports person and did so at a pretty high level. Then that sort of moved on to my career. And so as always, once I sort of found out what direction I wanted to go in the property industry, it’s sort of a well, given salesperson was one stage, and I had to be better and go to the next stage, and I had to go into ownership. And then once I got the ownership of a franchise, how could I make that bigger? What can I go from there? And then it was into was into finance, and just kept building.
Jason Hellyer 4:45
And once you, once you’re in, it’s sort of, it’s all consuming, you know, just you sort of, when you’ve got employees to look after and, you know, and families and things like that. It’s just, there’s no way out, you know, do you found one, though?
Bill Gasiamis 4:59
Yeah, yeah. It found you. It did. Yes, yes. Do you have a moment where you go? What the hell am I doing?
Jason Hellyer 5:07
All the time, yeah, yeah, all the time, back then. But as I said, I was you’re so far in you can’t just step back, you know, not something you can just walk away from, because you’ve there’s so much responsibility buying for yourself, but for other people as well, you know their families and the people you’re paying, and everyone’s who’s invested in your business, or you know your career and what you’re doing, it’s a multiple domino effect of any decision you make.
Bill Gasiamis 5:37
So, how many years were you going hard, like a few decades, but how long before you got sick that? Were you doing that kind of work or that?
Jason Hellyer 5:48
Yeah, but listen, probably, there’s probably 10 to 15 years of business ownership, and then I got out of that, and we moved back into more of a, I suppose, an employee type role or work for a larger company, and that was about probably seven years of that.
Bill Gasiamis 6:06
Okay, so probably two decades, going real hard.
Jason Hellyer 6:10
Yes, yeah, definitely, and it was, yeah, we definitely two decades, maybe even A little bit longer, to be quite honest.
Overcoming Ischemic Stroke And It’s Impact on Jason’s LifeBill Gasiamis 6:21
Yeah. And what about the day of the stroke? Like, what was that like? Was there any sense that there was something about to go wrong? Any previous warnings that, in hindsight, you go “Oh my god, that was probably.”
Jason Hellyer 6:36
I think it’s got a hereditary high blood pressure in the family. It was, you know, and it was something I hadn’t been treated for, but I was very I was a bit blase about tablets and things like that, and I sort of didn’t take it too seriously and to my different, of course, but it was something that’s been there. I mean, I’ve been in, I was in the doctors once it was a reading of over, like 210 over 110 sort of thing, you know. And he was to me, I felt normal. Didn’t feel there’s no headaches, no nothing.
Jason Hellyer 7:09
That was just an all day for me. And so that was always there. It was just, I think the night had happened. It was late, and the wife and I had been out for a few drinks, and we’d come home, and I was lucky enough that she’s pretty switched on with it all, and she noticed straight away what was going on. I tried to get up out of bed to go and go to the bathroom, and I couldn’t get up, couldn’t get a hold of the bed, and she looked at me instantly and just said, you’re having a stroke, Jason, and she had me in the car in 10 minutes, I already in the back of my mind.
Jason Hellyer 7:45
It’s quite weird at the back of my mind, I already always had a precautionary hit in the cupboard of aspirins, so if anything ever went wrong, would be so I sort of, I think deep down, I knew that they would catch up with me one day, I suppose. And I remember chewing on two aspirin straight away. She got me in the car and then down to Sunshine Coast hospital and straight in, yeah, and what kind of a stroke was it? Is it a I always have trouble pronouncing it ischemic. Pronounce it man, well done. Yeah, I practice that.
Bill Gasiamis 8:23
The only trouble with strokes is you don’t know what kind of stroke you’re having. So aspirin would have been a disaster. Because if you had, of course, yes, if you had a hemorrhagic stroke, that could have been terrible.
Jason Hellyer 8:38
That’s right, yeah. In hindsight, I had no idea.
Bill Gasiamis 8:41
Yeah, for a heart attack, I think they recommend, you know, chewing a couple of aspirins if you’re feeling chest pain and all that kind of stuff, yeah, thins the blood and helps her flow better. But for stroke, the best thing to do is nothing.
Jason Hellyer 8:54
Yeah, and all this education over now, afterwards, beforehand, I just decisions made back 20 years.
Bill Gasiamis 9:02
So were you a smoker and a drinker?
Jason Hellyer 9:04
I was one of those people who smoked when they drank. I wouldn’t smoke at all. Didn’t even think about it, but as soon as I had couple of beers, it was a it was on for young and old. Yeah, all the above, you know. And I love to, you know, I love to be here. I love the boys, and it was going out for and having a good time, and it was just, and I was a social I wasn’t a drinker at home. I was a social drinker.
Jason Hellyer 9:32
And that’s just how I was. It was all my life and but in hindsight, Bill, to be quite honest, it’s probably one of the best things that’s ever happened to me. That’s it changed my life. Changed my life dramatically and and only for the better.
Bill Gasiamis 9:50
Yeah, so I agree, because I wrote a book that was named The Unexpected Way The stroke Behind Became The Best Thing That Happened, right? Like, I totally get what you’re saying. Some people do not. Like hearing that they don’t like hearing I understand, yeah, stroke was the best thing that happened to us, because what they see is a different version of that, and they see recovered X amount of years down the track, to a certain extent, right? And they they are not physically like us, and they’re struggling with a lot, lots of other things, and they can’t, that’s right, comprehend that.
Bill Gasiamis 10:21
But what we’re saying is we’re not saying we recommend stroke. What we’re saying is that the growth that came after stroke is the part that was the really good thing about it. We wouldn’t recommend the stroke for anyone. It’s shit, totally shit, and it remains to be shit for many years. And I went through a really hard time for seven, eight years, and it started to get better and better and better, but in the acute phase, my God, like I wouldn’t wish it on anybody, let alone.
Jason Hellyer 10:49
Nah, yes. I certainly didn’t think that for the first six months. But looking back now, I can see that in my mind, it was a, it was a wake up call I needed, you know, yeah, better my life has become after it.
Bill Gasiamis 11:09
We’ll be back with more of Jason’s remarkable story in just a moment. But first, I want to take a second to thank the team at Banksia tech for supporting this episode. They’re the proud distributors of the Hanson rehab glove by cerebo, a soft, robotic glove designed to help stroke survivors improve hand movement and coordination from home, whether you’re early in recovery or years into it, the Hanson glove can help you retrain your hand through gentle, repetitive motion, and it’s being used by stroke survivors around the world to rebuild confidence and independence.
Bill Gasiamis 11:42
If you’d like to learn more, you’ll find the link in the show notes. All right, let’s get back to Jason, who’s about to share how a single mindset shift changed the way he lives every day. Yeah, I will ask in a little bit. I want to just to get my shot around your wife and her response like so she realized something’s wrong. You’ve smashed the couple of aspirins just because. And then how do you get to the hospital? Did you get an ambulance?
Jason Hellyer 12:08
Straight in the car, was lucky enough. We had a near new hospital at Sunshine goes to University Hospital just been probably about three or four years old that stage, and we were only about 15 minutes away. So she was straight in the car, and I was still able to get to the car and get in, straight down, straight into the emergency the lady behind the counter there see me. Instantly, I was straight in, and yeah, into the wards, and doctor see me, and what they did to me, I don’t know, a couple of things went on, and I’ll sort of in a bit of a eight days.
Bill Gasiamis 12:42
And so the fact that she said you’re having a stroke, did that register with you? Or were you just like it.
Jason Hellyer 12:48
Did it did register? Yeah. And I was sort of, I was surprisingly calm in my own mind. I didn’t panic at all. And I’ve been a bit like that during my life. It’s just sort of Right, right? You got a situation. What’s the best way we need to deal with this? And certainly me panicking, and I was probably about 110 kilo at the time, it’s not something my wife needs to deal with, and trying to get me into a car or out of a car and things like that. And just just sort of, I suppose, just did the best I could in that with what I was dealing with at the time. Yeah, what’s my mindset?
Bill Gasiamis 13:23
Yeah, that’s pretty cool. I mean, calm is good. That’s the best way to be because it also decreases the likelihood of you creating your own complications through stress and through anxiety and through all the things that we can do to ourselves so and then when they finally kind of tell you what’s happened, then how do you know it’s a weird one?
Overcoming Ischemic Stroke – Acceptance in an InstantJason Hellyer 13:47
I’ve thought about that beforehand. I mean, I’m very, always very quick to to what’s the word, I suppose it’s to accept what’s happened. You know, I’m not going to go into denial. I This has happened. Now. I need to sort out, how do I deal with this, and how do i What’s the best outcome I can make from this? And, you know, it’s always a thing about itself. I was thinking about like, we’ve got six children, and there’s 1000 other people I’m thinking of. I wasn’t thinking of myself. I was like, well, right? I’m just going to listen to everything I say.
Jason Hellyer 14:25
I’m going to do everything I’m told. And I knew my life was changed right at that minute. I knew instantly everything was changed. I knew I was never going to touch another beer again. I knew I was never going to touch another cigarette in that within half an hour of being waking up that decision was already made. So, yeah, I just accepted what it was, and then just had to go forward, for me.
Bill Gasiamis 14:50
It’s really interesting acceptance, right? I imagine when you came to that acceptance, you would have had the deficits already you did experience some pretty soon.
Jason Hellyer 15:00
What were they? Yeah, I was more so the Face drooping and slurred speech and of weakness in the right arm, and I noticed that instantly and also over there over the coming weeks. But I was very lucky that with a little bit of work, it sort of slowly started to come back, and then I’m still, well, you can still see a little Occasionally, you’ll see a little bit of my side here, or have a bit of a drop to it. But apart from that, on the day to day, you probably couldn’t tell if you’re looking at me, but I can tell sometimes when I’ll still get 100% I’ll get the occasional slur.
Jason Hellyer 15:46
I can feel it in me. I can feel it. And as I said, you might not know, but the wife picks it up straight away. Go to bed. You’re dribbling again. So yeah, on the day to day, I know, and it’s the back of my mind, it’s there, but I certainly, you know, as I said, I’ve accepted what it is, and I just will try and build the best life I can around it.
Bill Gasiamis 16:13
Yeah, you know, acceptance is a really, it’s a practice. I think it’s a practice everything way to overcome with it. But I think, you know, correct me if I’m wrong with you did the business, the businesses you were in, help with that, because in business, stuff goes wrong. Things happen, you know, really quickly, and you have to adjust and sort of shift focus. And you also can’t think of solving problems that haven’t occurred for you yet.
Bill Gasiamis 16:43
You just realize that I’ve got to solve each problem as it appears, because I’ll never take action on anything if I try and solve everything before, before it occurs. Do you think the business, business helped you understand like the best way to approach this particular life situation.
Jason Hellyer 17:04
I think that’s a great question, actually. And think about it now you probably were right. I mean, so many times dramatic events would arise and you just had to deal with them. So yeah, I tend to think you’re probably correct there without me knowing it at the time, I think that certainly could be the case.
Bill Gasiamis 17:24
Just defaulted to that business mindset of, okay, well, we’ve got a problem. Well, yes, do anything, but accept that we’ve got the problem, and now let’s find a way forward, and then let’s solve this. And then hopefully, yes, yes, don’t have another one, but if we do, we don’t know what that will look like, but we’ll put the same approach towards it?
Jason Hellyer 17:42
Yeah, I think you’re under percent correct. That’s exactly what, and that’s exactly the mentality.
Bill Gasiamis 17:45
I had when you tried to get out of bed for the first time you’re you had right side weakness. So what was that like your experience?
Jason Hellyer 17:55
Yeah, it was, it was, well, frustrating is a word, I think, because you just, it is because you just, you just don’t when your body’s not working how you want it to work, or your speeches and etcetera. And I was one of those people that always sang in the car and around the house and around the yard and things like, and I couldn’t. And that was one of my, weirdly enough, that was one of my most devastating things to me, is I couldn’t be verbally, who I was, where it was like, always having a tune going on and thinking, I’m Harry Connick Jr. and just having a laugh.
Jason Hellyer 18:29
And I couldn’t do that, and that was wildly frustrating for me. Yeah, I worked on the right hand side weakness that was lucky enough to come back pretty quickly in the first few, sort of four weeks, I suppose.
Bill Gasiamis 18:47
You got heaps of extra neurons around talking and all that.
Jason Hellyer 18:50
Yeah, so I always had, I was always going to be practicing all the time.
Bill Gasiamis 18:54
So, were you an auctioneer?
Jason Hellyer 18:56
No, It’s funny enough. I’m a I’m great. In a crowd of three or four. I don’t know why these people want to listen to me. Nothing worthy of telling you, you know, so that’s been that mindset, but I think I’m getting a little bit better at that with the role I’m in now. I need to do a lot more of it, so it’s certainly something I’m working on what kind of role are you in now? I work for a major ASX, 200 listed company now in the retirement sector or the lifestyle sector for over 50s. Run the sales teams for those.
Jason Hellyer 19:34
So there’s no I haven’t got the stress of property in where you’re dealing with people’s listings and their emotions of homes and the responsibility of that and, and it’s all consuming 24/7 where this is their beautiful homes, they’re there in place. And it’s just talking to people in general. And, and I’m dealing with people in city over 55 bracket, so that excuse, that train going past. So it’s a very. Easy conversation for me. And there’s no it’s an easy role, and I’m well looked after, yeah, yeah, when the House saw themselves, I’m just there to facilitate.
Bill Gasiamis 20:11
Yeah. Okay, so you, you have got, like, a good carrying speaker’s voice, and, you know, just anything that comes out of your mouth will people will pay attention just because of the way that you construct the sentence. People from you. People want to hear from you, just because you have a different perspective, a different point of view. You don’t have to be special or important or anything like that. You just have to have a different point of view, just so that you can create conversation, right? And and I think like you, I think like me, perhaps you love the sound of your own voice.
Jason Hellyer 20:49
Well, you could be right. I’ve told that.
Bill Gasiamis 20:52
hat’s all right. I mean, that’s a good place, right? You go up there, yeah, just have a listen to what Jason’s got to say. You think about it for yourself. And then you just talk. And then you go, shit. Yeah. Did I say that? I really love that, that I said that.
Jason Hellyer 21:05
Well, that was I’m certainly famous for things coming out that shouldn’t So, yeah, but it was my wife who encouraged me to come on and talk to you and to have a chat and to share my story. So I appreciate you letting me do that and and certainly getting practice in talking to you here now, and my public speaking, in a way, in a sense, yeah.
Bill Gasiamis 21:24
Don’t worry about it. This is only going to hundreds of 1000s of people around the world.
Jason Hellyer 21:30
I can only see you at the moment, so I’m happy with that.
Bill Gasiamis 21:33
Thank you. Really interesting, isn’t it, right? So I’ve done a bit of public speaking. That’s one of the first things I did after I had my first two brain hemorrhages, and one of the challenges that I had was constructing a sentence, remembering and all that kind of stuff. And I did that as a volunteer for the Stroke Foundation, and I feel like instinctively, that helped me with my speech, my memory and my recovery in those areas. And the first time I got up to speak, you know, I was petrified, you know, shaking. I was trembling the whole bit, the whole works.
Bill Gasiamis 22:05
But every person in the room was a stroke survivor, so everyone had some kind of a deficit that was impacting them on delivering, you know, their their speech or their presentation, like we only had to speak for minutes, literally minutes. But then it gets better and better, because what you do is you start relating to the crowd from the perspective of, like, I’m here to share something, but I’m going to learn from you as well. So it’s an interactive conversation. It’s less about I’m telling you what to do, and you might think I’m an idiot, but like it’s more about let’s learn together.
Bill Gasiamis 22:43
We will talk and we will learn together. That’s kind of what I get out of it. Now, that being said, that led me to the podcast, and that led me to all the other things that I’ve done, as well as recently for the Royal Melbourne Hospital neurosciences gala bull, they asked me to speak so that I could be the guy who comes on just before the auction start to just squeeze, to squeeze as much money out of the people sitting in the audience as possible, right? No pressure, yeah, and I was, and I was cool, right? Not nervous or anything.
Bill Gasiamis 23:18
But I’ve been speaking now on stage for about 13 years, right? 10 – 13, years, I’m talking about about 12 years. And I was being asked the whole time, are you nervous? You’re okay. You know, other people who, of course, must have been would have been nervous if they had the same job to do or whatever.
Bill Gasiamis 23:38
I’m like, No, I’m all good. I don’t get nervous. But I got emotional because I started talking about my story, and then I finish a sentence, and I was like trying to get through it, and I got through it all, but I had to compose myself. It was I had eight minutes, and I reckon I had to compose myself about five times.
Jason Hellyer 24:00
All right. Wow, yeah, no.
Bill Gasiamis 24:04
they reckon they loved it. They reckon it was awesome. It was the best. They reckon it will, you know, it pulled at the heartstrings. And it doesn’t really matter, like it doesn’t really matter. I’m on the stage just sharing my story and trying to get them to kind of connect with me, and the tear, the tears and the emotion kind of did that more, even though I was trying to.
Jason Hellyer 24:28
Absolutely, would have yeah from the heart, no doubt.
Bill Gasiamis 24:32
Yeah, and I couldn’t control it. Anyhow, got through it and tried to actually not burst into tears between the walk from my table to the stage and from the stage back to my table, like far out, but that’s it, man, it doesn’t really matter. People don’t really judge it that much. They probably give you more credit for being up there and speaking. Then, yeah. Me then, because they probably think that they can’t do it either. Do you know?
Jason Hellyer 25:05
Yeah, we always create the worst scenarios in our own heads, don’t we, you know? Yeah, we think.
Bill Gasiamis 25:10
Are you a bit of a head case or.
Jason Hellyer 25:14
Depends on who you talk to, Bill, yeah, no, no, I’m pretty I’m pretty level. I’m pretty level headed.
Bill Gasiamis 25:23
It’s not that, it’s just in that moment, you just get a little bit in your head about it, and it gets too much.
Jason Hellyer 25:29
I think so, yeah, there’s something I’m working on. I was lucky enough I just My eldest daughter just graduated from university, and she’d worked for 11 years for a doctorate, and she got us a very proud dad moment. She was also asked to do the closing speech on behalf of all the students etc there. And I’ve watched her over the years get better and better at her public speaking, but she’s addressed this audience of all these academics and, you know, and proud parents and other students, etc.
Jason Hellyer 26:01
I was just blown away at how calm and and relative she was to everyone, you know. And it was just, I couldn’t believe it. I was so proud of her, and I just aspire to be able to do that sort of at that level, you know. And it was nothing to her. She was like “Oh, it’s just stepped it’s fine.” I couldn’t believe it. Yeah, it was amazing to watch.
Losing My Voice, Losing Myself
Bill Gasiamis 26:24
Now that’s good. So, you know, going I might not be able to do this anymore. Like, what do you think was happening there?
Jason Hellyer 26:32
Yeah, well, I felt like I’d lost part of who I was, especially with the just the singing around the house. It was such a big I didn’t even realize at the time, and how big a part of that, of me that was just in because my wife always knows he goes, if you’re singing, you’re happy, you know, she always says that to me all the time. And, and the fact that I couldn’t do that, and I couldn’t recall words, and, you know, little bits and pieces like that, yeah, I sort of felt like I’d lost part of my identity. Yeah, absolutely.
Bill Gasiamis 27:00
Was there any like, really difficult moments, really hard, dark moments? Did you get to that stage at all?
Jason Hellyer 27:07
Or, I think, I think how close I come. I came sorry to putting my family, what putting my family through? It was my it wasn’t about me. It was more about them, and what I was putting them through and and said, My, what I haven’t explained to you is my wife’s mother’s had a stroke about two years beforehand, and hers was from falling at work and hitting her head, and she’s in a chair now and has lost a lot of her of complete right side movement.
Jason Hellyer 27:41
So the scare that it would have given my wife would have been, I can’t even imagine. She hasn’t shown anything, and she’s been nothing but supportive, but I know internally she would have been terrified.
Bill Gasiamis 27:53
And you smoked, you drank, it didn’t pay attention to your high blood pressure, and you should have done better.
Jason Hellyer 28:00
Yeah, so self indulgent. It’s ridiculous, you know. And, you know, being a father and a husband is, I know now, is so much more than just providing a house or, you know, the monetary side of things. It’s so much more. And, you know, I was a foolish man, it’s as simple as that. Well, that’s how I feel now anyway.
Bill Gasiamis 28:21
Yeah, do you think it’s about also example, leading by example?
Jason Hellyer 28:25
Grab. Couldn’t absolutely 100% and that’s why my life has changed dramatically from what it was now.
Bill Gasiamis 28:33
Yeah, one of the things that I did was sort of like, create the center of my universe became the kids and the wife, and it was about, like, trying to get better for them. If I got better for them, then I got better. And if I got better for them, then I got better for my parents and my brother and my extended family and everyone was kind of involved in it, but it was them. Initially. I wanted to be a better dad. I wanted to, you know, create a good example.
Bill Gasiamis 29:05
I wanted to be as hard working on my recovery as I possibly can. So I went out of my way. And then, when I wrote my book, The the dedication of the book is, you know, to all the stroke survivors first, and then it’s also to my family. It was like, if nothing else, I hope I’ve set a good example.
Jason Hellyer 29:29
Yes, absolutely. And how did no doubt you have?
Bill Gasiamis 29:34
Yeah, I’m trying to every day. It’s about how to also, how do I kind of read, not drinking? Reading was working too many hours, just having no downtime, no past times, no you know, and the interactions that I had with people were just small, short stints, family and friends, we saw on the weekends, that kind of stuff. But there was really no substance. It’s to my daily life, other than how much jobs I could get and how many quotes I could do, how many clients I could get everyone, how much I could charge them.
Jason Hellyer 30:11
Yeah, true.
Bill Gasiamis 30:15
Was it did you? Are you the kind of person that needed somebody to give them a bit of a lift, some support? I know your wife definitely would have done that. But was there any doctors or any professionals that you came across that kind of said, let’s move forward?
Jason Hellyer 30:35
Actually had a few different doctors I spoke to, and to be quite honest, I had some I’d felt just didn’t even care, you know, and then I was, I was on the search to find one who actually, you know, wanted to listen to you and hear what you’re saying, instead of just, here’s a pill, take the pill. I just wanted someone to, you know, ask those questions that I didn’t think to ask myself. And eventually found one and been with him ever since, and even though I live a long way away now, we have catch ups on the via zoom, etc, like we are today.
Bill Gasiamis 31:07
Yeah, that’s very common people finding that they come across doctors who are really well, difficult to deal with and don’t understand the human side of the That’s right, recovery, and a very disconnected so you had that.
Jason Hellyer 31:24
Absolutely, I did, yeah, yeah. But once I sort of found the doctor I was happy to deal with, or that was, I made a point of letting him know that was my experience and that I would be I was looking for a long term relationship, so to speak, even if I might not be in this part of the country or in Queensland, I wanted to be ability, to be able to still talk to him and deal with him. And he certainly gave me that flexibility.
Bill Gasiamis 31:52
No problems at all. Yeah. How important is that? Like my surgeon, you would have thought initially, right, she’s opened up my head, taken out the faulty blood vessels, set me back up, sent me out into the world, and that the interaction should stop and end there. And you would kind of be okay with that. You would say, All right, well, that’s pretty normal. I don’t see that as an issue, but it’s so much cooler that since my brain surgery in 2014, 11 years later.
Bill Gasiamis 32:21
I get to be at a ball on her behalf and represent stroke survivors that they can’t other donors or the state government or the federal government. So good, yeah. So just it’s next level, right? It just feels like I’m giving back. It feels like I’m still involved. The journey hasn’t ended. You know, it’s not just no big deal. We opened your head up, we stitch you up. You go home and move on. Like there’s more that’s required. I feel like I need to do more with this experience than just cop it on the chin.
Jason Hellyer 32:58
Certainly motivating you to continue on and go bigger and better I’d imagine.
Bill Gasiamis 33:03
And I don’t really kind of understand, understand that part of the journey, but it’s really cool that I get to give back in that way. It’s something strangely, what’s the word like, makes all the things that I went through kind of, I don’t know, worth it worthwhile?
Jason Hellyer 33:23
Yeah, no, get it well, you’ve got purpose. Now, you know your purpose is, what you’re doing is to to bring not only your story, but all of our stories, to everyone who’s going through this terrible, terrible thing. But, I mean, I listened to so many of your podcasts when I was going through it and and that’s how my wife actually found your name was on my podcast list when she was telling me what I should do and go and tell your story, etc. And so, yeah, certainly helped me, and helped me understand what I was going through. I mean, I didn’t know anything of anything.
Jason Hellyer 33:53
And listening to yourself, I lucky enough I had, I never took holiday. So I had a I had like, 12 weeks plus of holidays up my sleeve. So I just took them. But be quite honest, Bill, I never went back. I just stopped completely. I was lucky enough, and I was a position I could do. So for a short period, I was never going to be forever, but I knew what for that next 12 months, I had to concentrate on me and fixing me, and with, like you said, By fixing me, I could then help everyone around me as well, sort of recover, because they’ve all been impacted in some way from what happened.
Bill Gasiamis 34:30
Yeah, 12 weeks of holidays in Australia, that’s three years of holiday.
Jason Hellyer 34:34
That’s right, that’s right. You haven’t gone on.
Bill Gasiamis 34:38
Yeah, how? No downtime, nothing. I mean, just public holiday, obviously, and the main days, Christmas, New Year’s that kind of stuff, yeah, but no getting away, no, nothing.
Jason Hellyer 34:49
No, not really, no, not a lot of it. You know, it’s just how it was. It’s just how it is in that industry, you know, yeah, just crazy. You know, a lot of people don’t have a sort.
Bill Gasiamis 35:00
Like, I was gonna say your wife, like, surely, she’s going take a break. Let’s go somewhere. Let’s do something in that time, isn’t she?
Jason Hellyer 35:07
Well, casually, yeah. Well, I mean, she might have had a break, but I didn’t.
Bill Gasiamis 35:12
So she might have given that, had herself that opportunity to, you know, chill out a little bit somewhere for a couple of weeks. But you never did?
Jason Hellyer 35:21
Yeah, well, a little bit here and there, but nothing, nothing where I took major leave from or anything like that, but I certainly, I certainly did in the end, and it was also glad I had it up my sleeve, because certainly allowed a good peace of mind knowing you had income too during that period.
A Reality Check That Redefined What MattersBill Gasiamis 35:37
So yeah. So what did you do, like for downtime? When you did have some couple of days away from work or some downtime? How did you like to have fun, other than drinking and smoking.
Jason Hellyer 35:49
Which is always been about Mad fisherman. So I was a especially a beach fisherman. Grew up on the coast my whole life. So, you know, I surfed all my all my youth, and it’s the ocean’s been part of my life forever. So, you know, always a lot of time around the beach and around the lakes and around the river systems, etc. And, you know, it’s a place where I feel at home, whether it’s on a river and kayaking and all that sort of anything to do with the water I was involved in.
Bill Gasiamis 36:18
Yeah, that’s very cool. Did you do a life mortality check when you went through this? Did it trigger you in that way to think about things could end Absolutely?
Jason Hellyer 36:33
Yeah, it gives you a great the great reality comes with the fact that you know you’re not going to be here forever, and it certainly sets in place very quickly of what’s important. And it’s not how big your house is or what sort of car you drive, I can tell you now there’s no no importance to me whatsoever, it’s just all about, I remember lying on that bed, and I would have given when it first happened, older, given everything I owned just to have my children the room, it was, it’s a realism is something everyone needs to sort of go through. I think it’s a check that everyone needs at some stage.
Bill Gasiamis 37:18
What were the ages of the children. What’s the span?
Jason Hellyer 37:24
At that stage? It would have been 17 up to 26.
Bill Gasiamis 37:32
Okay, my god, you guys had a busy life. Well, sounds like you were at least good at one pastime. That’s right, yeah, yeah, good on you, man. So, so like nine years between the first one and the second one, and there was six children, you know, six children all up. Yeah, wow. You had to be just on all the time to deal with all of the stuff that happened in a family of six.
Jason Hellyer 38:04
Yeah, it’s probably why I drink.
Bill Gasiamis 38:07
Yeah. Super Woman. Is she working in that time, or is she, like, doing homework.
Jason Hellyer 38:16
Lucky enough that she could do a bit of a stay at home parenting, which was a blessing, yeah.
Bill Gasiamis 38:23
Yeah, far out. Man. What an out. What a like, you know, what an output that needs to sort of happen on a daily basis, you know, managing all those kids, get up, go to school, do your homework, sit down and eat, tidy up, you know, yes, I struggled with two kids, and you guys had six. I love it. Crazy. It is, I like it. So now, what’s life like now? So I know you’ve said there’s been a big difference, a big shift and a swing away from that kind of stuff. How do you go about your your day to day?
Jason Hellyer 39:01
Well, I have a very, very calm and peaceful life now. Well, the kids are flying the roost, so I don’t have any of those responsibilities. They’re often at university and working and doing all the bits and pieces. That’s the wife and I now. We’ve done a bit of travel, and we’ve, as I said before, we’ve just bought ourselves a little little farm up near Dubbo, and we’re renovating an old cottage up here now, and eventually we’ll get up here in the next few years.
Jason Hellyer 39:27
And this will be our little forever Nan and pop home looked at it was going to be we would choose a beautiful lifestyle over monetary items and Chasing career goals that mean nothing on a gravestone.
Bill Gasiamis 39:42
Yeah. Are you planning on having anything on the farm? Like, I know you have a farm, but are you going to grow anything raising it?
Jason Hellyer 39:50
No, I was up to the washi over miniature cows and all those things I see on Instagram. But yeah, in reality of it, I think it’ll be a. You chokes. We do. We don’t know yet. We’ll just see what happens. Just concentrate on getting the farmhouse up and running at the moment. And, you know, got chippies here as we speak, knocking things out. It’s 110 years old, so they’re finding new little things here and there all the time that we’ve been hidden. So, but it’s fun to do.
Bill Gasiamis 40:17
Yeah, for the people listening who are overseas, chippies are carpenters. We call, of course, in Australia, amongst others, of course, of course. Yes, that’s cool. So how about your health? Medication, all that kind.
Jason Hellyer 40:33
Of turned.
Bill Gasiamis 40:34
Radically. So how much weight did you lose?
Jason Hellyer 40:38
About 24 kilos. I’m down now. I think from I’m starting, I’m still on my work in progress. Still, I’ve done quite a few things and but I’m constantly working on, working on flexibility and everything at the moment. Whereas as we’re getting older, one of the worst things for as you get older is to get up and out of chairs and up and down off the ground and little things like that. So working. So it’s a forever work. I’m an ongoing artwork that’s got to always need fine tuning.
Bill Gasiamis 41:10
And are you tall?
Jason Hellyer 41:13
No, God no. Wish I was. My father was six foot four, and my mother was five foot two. And guess height I got mums? Yeah, so I come in around five eight.
Bill Gasiamis 41:23
It’s five eight roughly me so, but 110 kilos, that’s quite heavy for somebody, that’s fine.
Jason Hellyer 41:28
Yeah, I was rotund.
Bill Gasiamis 41:33
Rotund. Okay, yeah, that’s a big improvement, just the difference that that that makes on your physical like your body, being able to deal with all the physical side of it, that’s really good outcome, and working on your strength ongoing is really interesting that they say, Can I think like this studies about, Like the the muscles that you have on your body is directly correlated to the longevity of your life.
Jason Hellyer 42:08
Absolutely, yeah, I’m a big reader of all that sort of Dan Buettner stuff on the blue zones and longevity, and so I’ve done a lot of homework on that and, you know, and all that precautionary sort of exercise that we can do. So yeah, said every day is a little bit.
Bill Gasiamis 42:25
Like you go down that path. What you’re doing is you are improving your health, increasing your biological age, you know? So that’s exactly what we want to do, and that helps the brain. It helps the brain heal, recover, get better and better and better. And that’s exactly where you want to be heading. Also, absolutely, I was curious about, like, how stroke has changed you, not just physically, but also emotionally and and mentally.
Jason Hellyer 42:53
You know, I think the fact that I gave up the drinking was such a big part of my life on the day to day. I mean, I never considered myself to be an alcoholic. I was just someone who went for a beer. But in hindsight, I think I was, you know, and for, like, for the last three years now. I mean, I’ve been at a crystal clear mind every day, all day. I’ve had nothing. I’ve never had a hangover. I haven’t had this of so sharp now, and so my mind is so clear, and I’m so focused on everything I do with no deterrent or anything sabotaging it.
Bill Gasiamis 43:28
Wow.
Jason Hellyer 43:29
That it’s because better than ever, magic, so to speak.
Bill Gasiamis 43:37
So you just like you just had it. You were doing it for so long, you didn’t have a moment of extended period of time where you had a lot of clarity from.
Jason Hellyer 43:48
No alcohol, no, just get up and just grind and go again. And I’d a couple of beers on a Wednesday night, and that’d flow into a Thursday, then catch up on a Friday, then Saturday, down at the pub with the boys on the betting on the horses and Sunday recovery session, as I used to call them, going over couple of beers and a meal over the water. And they’re just week in, week out, week in, week out. Just yeah, it was for so long, it was normal, and I wasn’t alone. I mean, there was an army of us that used to do it, and they’re still doing it.
Jason Hellyer 44:25
I’ve actually influenced quite a few of my mates have actually given up the drink and everything now too. So sort of seen the changes I’ve made, and they’ve made the change themselves. But there’s plenty. There’s plenty of still playing the big game, so hopefully they don’t find out the hard way, like me.
Bill Gasiamis 44:40
Yeah, do you still get to hang out with them in the same environment? Environments and not drink? Sure? Yeah, I’m the first.
Jason Hellyer 44:45
One they ring because I drive everyone home. Yeah, if I’m up in the area, I don’t stay for hours or anything like you still just catching. Drop in, catch up, say, good day. And, you know, I head on back home and got on my I’m in bed by nine these days, you know. And the more the mornings are by my my beautiful place, it’s the early mornings are where I thrive. I love it. Yeah, so good.
Overcoming Ischemic Stroke
Bill Gasiamis 45:21
What strengths have you discovered in yourself that you didn’t know you had?
Jason Hellyer 45:26
IEP challenges some of you, which you’re aware and firstly, that was to lose the weight and to rebuild my strength, and then to get to here and there, and then set some tasks, like whether it was bike riding, at first it was like a 10 kilometer ride. Then it became a 25 kilometer ride. And then I thought, I could, I can do that lap twice, so it’ll be a 50 kilometer ride. And once I started to realize I could do that, I was thinking, I’m probably capable of more, a lot more than what I’m thinking I am.
Jason Hellyer 45:54
And when I was a young bloke, I loved endurance events, and certainly was it was capable in that regard, and could run all day, so to speak, you know. And I wasn’t. I couldn’t. My knees were shot from the weight I carried. But I could cycle. And I wasn’t a road cyclist or anything like that. I was basically board shorts instead of pluggers or thongs for those overseas listeners and well, flip flop, sorry, yeah. And a, you know, a surf t shirt, and I was off on the foot pass, and I was born. So, yeah, so our target then, so then we decided, let’s go and have a crack at that.
Jason Hellyer 46:36
We did that 700 kilometers through the Pyrenees and through Spain and all that over, in this case, was gone, and another option, not an option. And if you know Europe well, and I’m sure you realize that it’s not flat like Australia, it’s she’s up and down everywhere. It’s crazy, you know. And also to prove to my, you know, friends and my family and and in a way, to apologize to my past self for what I’d done to myself to now give myself the opportunity to do something amazing.
Jason Hellyer 47:10
And that’s when I decided to paddle the length of the Murray River, and Australia’s longest river and the third longest navigable, navigable river in the world, and set most sights on that dude.
Bill Gasiamis 47:21
Was that televised somewhere? Did people talk about that?
Jason Hellyer 47:26
I read about it. I read about it years ago as a young man, and I was always been, I’ve always been fascinated by Australia, the historic side of Australia, and the explorers. And it was always a great read for me. And the old river systems used to be highways, really. And there’s 1000 stories of people who’ve done it. And, you know, canoes, they used to make corrugated iron. And, you know, there’s a million stories out there like that. And it fascinated me, and that’s sort of what led to that.
Bill Gasiamis 47:55
Yeah, very cool. So do you think that part of the reason why?
Jason Hellyer 48:01
Well, the limiting mindset was that it was taking too long away from work and beer, simple as that, yeah, how do I take beer with me? That’s mental. It’s so messed up. It’s ridiculous, you know? It’s just but, I mean, I wasn’t even thinking about doing I said to myself, I’ll do that one day. I’ll do that one day. Then I’d look at myself in the mirror and go, you’re not doing anything. You’re fat bastard, you know, until you get your life sorted. But then one day just roll into another. It was just, it was just Groundhog Day, because continuously, and I said the wake up call I needed, was what happened.
Jason Hellyer 48:42
And then finally, as I said, when we got to the Camino, I realized I was capable of doing something as epic as that, you know, and there’s only, there’s an inland rivers register they have of Marathon journeys in the river systems here in Australia. And to date, there was 514 people had done it prior to myself. And to put it into context, as I tell people, is over 20,000 have climbed Everest.
Jason Hellyer 49:10
So there’s a small handful have done the trip on the in the modern era. I’m sure there’s plenty more that prior, but it was a challenge. I wanted to set myself alone, self sufficient. That was the scariest thing, I think, was actually being alone. And if something happened, I had no one to call on, and I wasn’t, you know, in some circumstances, of the hundreds of quarters from anyone.
Bill Gasiamis 49:34
Man, that is crazy. So you know, what’s interesting is that in the modern era, you know, we have these massive goals of, like, going further, longer, harder, whatever the indigenous people would have been up and down that river millions of times. And they always, surely they never thought, let me just see if I can just go, like, for 20 days straight, you know, without any support, help or anything.
Bill Gasiamis 49:57
It was always about practical. You shop the river. It was, I need to get somewhere. I need to, you know, deliver something. I need to go see another community. We’re gonna get food, whatever, you know, but we’ve got to do these, I don’t know, let’s go to the moon.
Jason Hellyer 50:14
Yeah, couldn’t go more, yeah, absolutely. They done it just to just get the family fed.
Bill Gasiamis 50:21
And I kind of get it. I kind of get those long endurance kind of events. I know that a lot of people get a lot out of them. Personally, it helps them break down barriers and overcome negative talk and all that kind of stuff. And I know that stroke survivors would benefit a lot from going. I’ve never walked more than a kilometer. I’m going to push myself to go two kilometers today, like I totally get that. But for everybody who’s listening and watching, what I’m trying to say is you don’t have to do a 5 day, 10 day, 12 day journey.
Bill Gasiamis 50:54
Just go around a block an extra time than you’ve been before. That’s enough. You the the feats of brilliance or effort or whatever, they just have to be something that helps you improve your personal best so that you can just see that there’s more to you than how you perceive yourself right now.
Jason Hellyer 51:14
That’s right, and getting all gone by one big choice, it was as I as I reached each goal, it allowed me to realize that maybe I could do a little bit more, you know, maybe I could do a little bit more of this and go a little bit harder. And I think it was more than just also just just to prove to myself that I can.
Bill Gasiamis 51:35
Okay. So that makes sense. Then, like, if you’ve done it in 1000 small steps, and then you’ve had goals that you beat every single time, then that makes life sense. I love that. That’s better than going, I’m going to wake up today and I think I’m going to go run 400 kilometers, and if I don’t, I’m a loser.
Jason Hellyer 51:53
Yeah, no, I didn’t. Didn’t know a lot of training is probably a year and a half where the training went into it, and 1000 1000 small goals in that process as well. So I knew if I didn’t get from that one to that one, I wouldn’t be able to do this one. So yeah, it’s all, it’s a domino effect moving forward.
Bill Gasiamis 52:12
Yeah. So sounds like stroke has changed your life in a meaningful way, like proper.
Jason Hellyer 52:17
Absolutely, yeah, and I think it’s certainly your mindset has so much to do with it, you can either choose the defeated mindset, or you can do the best of what you’ve got. I mean, I know I’m very lucky compared to some, and I’m fully aware of that, but every day I remind myself, and it’s sort of what keeps me motivated.
Choosing the Right Mindset: Small Steps, Big Recovery
Bill Gasiamis 52:37
Yeah, if you could share one lesson from your journey with somebody who’s newly diagnosed? What would that be?
Jason Hellyer 52:46
Well, I think about basically just, I suppose what I just said is that choose the choose the right mindset. You know, you can’t, even though it’s, feels defeating and it’s easy to go down that path you really need to focus on those one those small goals, one at a time, and step by step, you’ll get there. But that mindset is so important to a to a faster recovery and the appreciation of still being here.
Jason Hellyer 53:16
I think that’s, it’s so important. I mean, that’s my mindset. Is the number one thing that’s got me through everything. Don’t get me wrong, it’s been bad sometimes too, but recognizing it, and I could tell when I’m heading down that path and I’ve could have a little chat to myself and talk myself around and not let yourself go down that way.
Bill Gasiamis 53:38
Did you feel the need to have conversations with counselors, psychologists, or anything like that in this time?
Jason Hellyer 53:44
No, I didn’t. I probably should have, but I didn’t know. And I read and read and educated myself listen to podcasts like your own and others on not only on stroke, but also on health and healing, and you know, the nutrition and just physics in general, the body and a million different things, you know. And I’ve always been an avid learner or a self educator, and it was that was certainly what helped me as well understand what had happened and understand what I had to do going forward.
Bill Gasiamis 54:20
Yeah, that’s just as helpful. I mean, it just getting stuck into the content that’s available for free online is just as good as being absolutely you know, counseling, for me is kind of that a little bit next level. It’s when I want to personalize my conversation what I’ve learned with somebody else, so that they can reflect back on me, and they can give me another and I feel like you don’t get anything out of watching or listening to YouTube videos or books or whatever, then a counselor could be perfect, right?
Bill Gasiamis 54:52
Just go there, have a quick one hour conversation, get some stuff off your chest, get some feedback, and then, you know, take that to the next session. And. And also implement whatever you learned during during the break between one session and the next. And it’s awesome. It’s a great way to go. So I like the way you go about things, like, I like how you catch yourself, you know, in a negative mindset or spiral, or whatever, and you can snap out of it. And I think that’s a skill, if we practice that more often, I think that helps.
Bill Gasiamis 55:24
One of the ways that I do that is I say like, is what I’m doing useful right now? Is that helpful to me in any way? Is arguing with my wife beneficial in any way? Like, what the hell are you doing? Okay, take a moment. Get the hell out of there. Change the scenery, go back, maybe apologize to my wife, to myself, to whomever. Can I do, do the work that I’ve got to do, to kind of go all right, I was there. I’m okay for being there.
Bill Gasiamis 55:51
I prefer not to be there, and this is how I’m going to stop myself staying there for a long time, because I’m still giving myself permission to go there. But I’m going to try and decrease the amount of time I stay there absolutely.
Jason Hellyer 56:05
Yeah, no, I hear you exactly, yeah. I just tried not to argue with my wife in general.
Finding Strength, Joy, and a New Identity After Stroke
Bill Gasiamis 56:18
I’ve got one last question, which just popped into my head right now, when you’re walking 700 riding 700 kilometers, yes, what are you doing on those rides? I know you’re pedaling and that, but what else are you doing? Because I imagine it’s not just no talking close, you know, like focus and just writing, like, what goes on?
Jason Hellyer 56:40
Well, it’s, I think, the beauty of the Camino de Santiago. It’s such an ancient pilgrimage. And it’s we riding through towns and past cathedrals are 1002 1000 years old, and the same as the towns that we’ve got, we’ve got such a lack of history here in Australia, not not our Aboriginal history, of course, but our white history that we can have. You just realize how young we are here as a this side, that side of our country. It’s incredible, and the it’s so different. And, you know, and you can the amount of pastries you can eat on 100 kilometer bike trip is phenomenal.
Jason Hellyer 57:24
So yeah, every little Yeah, and it’s not like it’s 100 kilometer stretches between towns. There’s a new little town every 30 or 40 kilometers. So it’s quite, it’s not, you know, we weren’t sleeping, we weren’t sleeping in the bush or anything like that. So there was luxury at the end of the day, and it was amazing things to go and see and sells the sites. And we weren’t, we weren’t rushing through it. So it was beautiful.
Bill Gasiamis 57:53
Yeah, okay, so it’s an experience. It’s not grueling, it’s not a endurance event or anything like that, go along and then see what’s going on and where you’re Yeah, you’re at something new. And the good thing about doing 700 kilometers, you don’t have to feel guilty about the pastries.
Jason Hellyer 58:13
No, that’s right. No, we certainly didn’t. No, no, I don’t think we lost any weight at all, but that’s okay. That’s what it was for us to for us a little reward for us for all the work we’ve done on, you know, repairing my health and and Sharon, my wife, being as beautifully supportive, supportive as she’s been.
Bill Gasiamis 58:33
Yeah, mate, it’s a real pleasure to meet you. Thank you so much for joining me on the podcast your story.
Jason Hellyer 58:40
You too, Bill. No worries. Thanks for having me.
Bill Gasiamis 58:42
That was Jason Hellyer sharing how a stroke became the turning point that reshaped his life, physically, mentally and emotionally. If you’ve been inspired by Jason’s story, remember, recovery isn’t about perfection, it’s about progress, lifestyle change, mindset and patience can make a world of difference. You can find Jason’s full episode and others like it on YouTube, Spotify and Apple podcasts. Just search Recovery After Stroke.
Bill Gasiamis 59:10
If you’d like to dive deeper into your own recovery journey, check out my book, The Unexpected Way That A Stroke Became The Best Thing That Happened, at recoveryafterstroke.com/book. And if you’d like to support this podcast and keep it going, consider heading over to patreon.com/recoveryafterstroke. And of course, a final thanks to Banksia Tech, proud distributors of the Hanson Rehab Glove by Cerebro for helping make this episode possible. Until next time, remember, be kind to yourself, celebrate the small wins and keep moving forward in your recovery journey.
Intro 59:45
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion. Nor do we recommend any treatment protocol discussed all content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis.
Intro 1:00:15
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Carolyn J. Routh Stroke Recovery Journey: Overcoming Fear After StrokeWhen a series of crushing headaches brought Carolyn J. Routh to the hospital, she thought it was just another battle in her long fight with Type 1 diabetes. But what looked like migraines was something far more serious — a venous sinus thrombosis stroke waiting to strike.
On Thanksgiving morning in 2003, while lying in a hospital bed surrounded by doctors,
A Stroke No One Saw ComingFor weeks, Carolyn had been in and out of doctors’ offices looking for answers. Her MRI had come back clear, and everyone believed she was fine. But her instincts told her something was wrong. “The pain was unbearable,” she remembers. “It wasn’t a normal headache — it felt like my head was going to explode.”
When she suddenly lost her speech, everything shifted. “In my mind I knew what I wanted to say, but all that came out was gibberish.” She was transferred to a larger hospital, where she would finally discover what had been missed — a blood clot the size of a pinky finger sitting in her brain.
By the time the doctors realized it, the stroke had already begun.
When Life Stops Without WarningThe clot had caused a venous sinus thrombosis — a rare but dangerous form of stroke that blocks blood flow in the veins of the brain. The damage left Carolyn unable to speak and paralyzed down her right side.
“I could hear and understand everything,” she says, “but I couldn’t make anyone understand me. I just gave up. I thought, this is it — I’m done.”
It’s a thought many survivors have when they first come face to face with the unknown. You can feel the life you once knew slipping away. And yet, even when everything seems lost, something inside keeps fighting — sometimes quietly, sometimes fiercely — to come back.
Relearning EverythingWhen Carolyn finally woke up, the doctors had warned her husband, Daniel, that she might not remember anything. But as soon as she saw him, she burst into tears and said his name.
That moment marked the beginning of her recovery.
Her speech came back first, followed by the slow, painstaking process of walking again. “Before I left the hospital, I told myself I would do everything they said I couldn’t,” she laughs. “It took me an hour to button my shirt and zip my pants — but I did it.”
Therapy became her new normal. Her right hand wouldn’t cooperate at first, and she had to consciously think about every single movement. But through persistence and sheer determination, she not only regained her strength — she found herself again.
“I may have to walk slower, but I can walk. That’s all that matters.”
The Fear That Never Fully LeavesEven after the body begins to heal, fear often lingers. For Carolyn, the mental recovery was just as hard as the physical. “Every headache terrified me,” she admits. “Every little twitch, every off day — I’d think, is this another stroke?”
That’s the part most people don’t see: the constant vigilance, the second-guessing, the worry that history might repeat itself.
Overcoming fear after stroke isn’t about pretending it doesn’t exist — it’s about learning to live with it. Carolyn found strength in acknowledging her fears and talking about them openly with Daniel.
“I’ve learned to tell him when something feels off,” she says. “That way, if something ever happens again, he knows what to look for.”
That communication — and her willingness to face fear head-on — became one of her greatest tools for recovery.
From Survival to GratitudeToday, Carolyn calls herself “a walking, talking miracle.”
She’s grateful for every moment she gets — even the hard ones.
“I used to say, ‘I hate my life,’ when things went wrong,” she admits. “But not anymore. I realized I don’t hate my life. I love my life. I just hate the tough moments sometimes — and that’s okay.”
That simple shift in language — from hopelessness to gratitude — transformed her recovery. She stopped seeing her stroke as the end of her story and began viewing it as a new beginning.
“Find your happy,” she says. “Some days it’s harder than others, but there’s always something to be grateful for.”
The Power of SupportThroughout her recovery, Carolyn’s husband, Daniel, became her anchor.
He pushed her when she needed it and caught her when she fell — figuratively and literally.
“There were days I’d get so mad at him for pushing me,” she laughs. “But I know now, he was doing it because he believed in me even when I didn’t.”
For many stroke survivors, that kind of support — from partners, family, friends, or even an online community — can make the difference between giving up and growing stronger.
If you don’t have that support around you yet, find it. Connect with other survivors. Join a group. Talk to someone who understands. You don’t have to do recovery alone.
A New Chapter of CourageCarolyn’s story is one of resilience, but also of realism. Recovery isn’t quick or easy. There are moments of fear, grief, and frustration — but also joy, laughter, and gratitude.
Every day is a balancing act between fear and faith, exhaustion and persistence, setbacks and victories.
Carolyn continues to travel, share her music, and live life fully — proof that recovery isn’t about getting back to who you were, but becoming someone even stronger than before.
If You’re Struggling With Fear After StrokeFear after stroke is normal. But it doesn’t have to control you. Here are a few ideas that helped Carolyn — and may help you too:
- Acknowledge it: Fear thrives in silence. Talking about it breaks its grip.
- Track your triggers: Notice what causes anxiety — fatigue, pain, certain thoughts — and share that with your doctor.
- Stay connected: Isolation feeds fear; community dissolves it.
- Focus on gratitude: Each small victory matters — and gratitude fuels hope.
- Remember your why: Like Carolyn, find your reason to keep going. It could be your family, your friends, your dreams — or simply life itself.
You’re Not AloneIf you’ve survived a stroke, you’ve already proven your strength.
Recovery isn’t about being fearless — it’s about moving forward despite fear.
Carolyn’s journey reminds us that even when life stops without warning, it can restart with purpose.
Want more stories like Carolyn’s? Read The Unexpected Way That a Stroke Became the Best Thing That Happened — a book that helps you find meaning and direction after stroke.
Join our community on Patreon: patreon.com/recoveryafterstroke You’ll gain access to survivor Q&As, behind-the-scenes insights, and one-on-one guidance to help you move forward.
Carolyn J. Routh: Finding Strength and Hope After StrokeCarolyn J. Routh’s story shows how strength, hope, and love can guide you through fear and toward recovery after stroke.
Support The Recovery After Stroke Podcast on Patreon
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Highlights:
00:00 Carolyn J. Routh’s Introduction and Background
02:24 The Day of the Stroke
07:23 Immediate Aftermath and Recovery
13:30 Challenges and Deficits Post-Stroke
25:06 Emotional and Mental Impact
32:42 Bill: Navigating New Battles After Stroke Recovery
41:58 Life After Stroke and Band Activities
54:32 Advice for Stroke Survivors
1:03:21 Final Thoughts and Contact Information
Transcript:
Carolyn J. Routh’s Introduction and Background
Bill Gasiamis 0:00
Hey there. It’s bill here before we jump in a quick thank you to everyone who’s been supporting the show on Patreon. Your help covers some of the costs and keeps this Recovery After Stroke Podcast going after more than 10 years of me doing this solo and a big shout out to Banksia Tech, proud supporters of this episode and distributors of the Hanson rehab glove by cerebro. It’s designed to help stroke survivors improve hand function at home, whether you’re early in recovery or years into it, and you’ll hear more about this later in the episode.
Bill Gasiamis 0:33
Today’s guest is Carolyn J. Routh, who had a venous sinus thrombosis stroke at just 34 she lost her speech, her right side movement, and for a moment, her confidence. This episode is about overcoming fear after stroke, and how Carolyn found her way back to strength, gratitude and purpose. So grab a tea or coffee, settle in and let’s get into it. Carolyn Routh, welcome to the podcast.
Carolyn Routh 0:57
Thank you for having me. This is going to be great.
Bill Gasiamis 1:00
It certainly is. Tell me a little bit about what was life like before stroke?
Carolyn Routh 1:06
Pretty normal. I guess. I grew up in a family business. My grandparents started a restaurant in 1946 so I grew up in the back of the restaurant and worked there. Always wanted to be a musician. And finally, in 2003 Well, 2001 let me back up. My husband, Daniel, and I met. He’s the guitar player, and we started new blue, and we haven’t looked back since. We’ve enjoyed playing music.
Carolyn Routh 1:31
And I had two strokes my my two strokes right after we started new blue. So everything was great. Up until that point, the band was going great. We were both enjoying what we did. I was just loving life, and then the strokes that set us back a little bit.
Bill Gasiamis 1:54
I have a feeling that new Blue was a country band.
Carolyn Routh 1:59
We played blue grass, and we do a little bit of country here and there. We even throw some rock tunes in, because Daniel and I both had a rock and roll background, so we had to do a little bit of that just to satisfy what we came from.
Bill Gasiamis 2:12
How old were you guys when the band got started?
Carolyn Routh 2:14
I was 34, and let’s see, 34 Daniel would have been 25 he’s nine years younger than I am.
The Day of the StrokeBill Gasiamis 2:24
Okay, I like it, my wife’s four years older than me. And, you know, even she got the ah, you go for the younger ones. And it’s like, wow. Age is really, you know, it’s really not that relevant, in my opinion. And as long as the two people are in it for the same reason, and everyone’s on board for the same reason, then that’s cool, right? And that reason for me would be love, right?
Carolyn Routh 2:52
Yes, sir, absolutely. We started out as best friends because of the music, and in fact, we were best friends long before we ever started new blue. So I really don’t know when it turned from friendship to more than friendship. Those lines kind of blur. He never really asked me to marry him. It was just like we both knew it was time to get married, and so we went and got married at the courthouse.
Bill Gasiamis 3:17
I love it. So he, he was definitely, I’ll tell you now, he was definitely on board the whole time. He was thinking, Well, how am I going to manage this? How am I going to get married to this person? And then I think he he thought, why don’t I just go with the flow, go with the flow, and then just spring it on her one day.
Carolyn Routh 3:35
That’s kind of what happened. It really is. That’s a good description of it. But he was there through all the strokes, because that’s when we were best friends. We didn’t get married. We started the band in 2003 and we weren’t married until 2006 so there was a while there.
Bill Gasiamis 3:50
What was the day like of the strokes before they happened? What were you up to? What were you doing?
Carolyn Routh 3:55
Well, it really happened in a weird way. I had been having severe, severe headaches, like for three or four weeks, went to the doctor. They thought it was migraines. They were going to send me to a Headache Clinic, and before I got there one weekend, it just got so bad that it was debilitating. And so they took me to the hospital, and I stayed in the hospital for the weekend, they the only thing they really did was just medicate me, which was not good. I don’t like taking a lot of medicine. And then they released me on Wednesday morning, they had done an MRI.
Carolyn Routh 4:34
The MRI came back and they said, You’re clear. There’s no problems. We’re just going to send you to the the Headache Clinic the following Sunday and then on Thursday morning, Thanksgiving morning of 2003 laying on a hospital bed in an ER and Moses cone, it’s one of the hospitals here. It’s one of the the bigger hospitals here, surrounded by Team. Of neurologist, I had my strokes, so I could not have been in a better spot at that time to have strokes than where I was at.
Bill Gasiamis 5:09
Goodness, that is the best timing ever and when. So that’s the thing. You’re in the hospital and you have the strokes, but the before that, the MRI didn’t show anything.
Carolyn Routh 5:21
No, when I got to the hospital, they did another MRI. This is before I stroked I actually came into the hospital the night before, because I lost my speech. I was just garbling everything in my brain. I knew what I wanted to say, but it just came out like mush. It was indistinguishable. So that’s when they took me to the hospital then, and I’m also a diabetic, and at that point, everybody just thought I was having a very low blood glucose, and that’s what was causing that. And then they transferred me from our hospital to the larger hospital late in the night, and they did another MRI.
Carolyn Routh 5:59
And after I had the strokes, my neurologist took Daniel back in some room and showed him the two MRI slides, the one at the previous hospital, like four days before you could see the clot. You see the clot perfectly formed, and they just totally missed it. I don’t know who read that, but they need to find another job.
Carolyn Routh 6:23
I don’t know whether that would have made a difference or not, but I would think possibly, if they had known about it even three days before the incident, that they may could have started blood thinners and done something about it. So it just, it was, it was really unfortunate on the front side, but it was going to happen again. I was in the best place for it to happen, at the hospital.
Bill Gasiamis 6:44
Yeah, human beings sometimes make mistakes, and unfortunately, in hospitals, the mistakes can be dramatic. Then you you know, you’re presenting with a stroke, with stroke symptoms. They take a scan, somebody missed it, or whatever. You don’t look like you’re having a stroke, really, you know, you know, it’s not the common stroke signs or or symptoms, they kind of go, “Oh well, and it’s probably not a stroke. It’s something else” And that’s the thing. They scanned my head about what I’d say, maybe 18 months before my stroke, my first bleed, and they never found it either. It was mine.
Immediate Aftermath and Carolyn J. Routh Stroke RecoveryBill Gasiamis 7:23
Was a blood vessel that was malformed, and they never found that either. So sometimes, you know, these things happen, and I went for a massive headache and all the real challenging kind of head situation. And they did every test. They scanned it. They did everything because it hadn’t bled yet. They never found blood. So that ruled out certain things. But then they also missed it on the on the scan, because the scan wasn’t looking for, unfortunately, a blood vessel type problem. It was looking for other things. I don’t know what, but yeah, these things happen, it’s common.
Carolyn Routh 7:59
Mine was very surprising because I had venous sinus thrombosis, and my my clot was right here in the top of my head, and it was about the size of a pinky. I mean, it was very pronounced, and when my brain had started rerouting around that spot, thank goodness it was it was a vein. It was Venus, so it was flowing back, or I would have probably not been here right now, but my brain, being the remarkable thing that it is, had started trying to reroute around the clot.
Carolyn Routh 8:30
And that’s I stroked first. So that’s when that one blew out and the blood hit my brain, and then that’s when I stroked and they found the clock. It was. It was a pretty remarkable occurrence, genuinely very unexpected, and just if it’s going to happen, it’s going to happen to me.
Bill Gasiamis 8:53
It’s a remarkable occurrence. That’s understatement of the year, definitely remarkable. I mean, everything that could go wrong went wrong. And then everything that could go right under the circumstances definitely went right this time around. What when you woke up? Or firstly, how long did it take for you to sort of come around and be back in the world again?
Carolyn Routh 9:14
Well, I I remember being in the first hospital again. I had awareness of what was going on around me. I just couldn’t speak. And because I could, and I just, I sort of gave up at that point, you know, I just, I felt like I was just laying there on that bed. Nobody knew what was going on with me. Nobody knew. I couldn’t tell anybody what I was feeling. And so I had just sort of given up and just resigned myself to what happens, happens, because I had no clue what was happening either.
Carolyn Routh 9:39
And when I got to the larger hospital after they did the MRI, or when they were doing the MRI, I am terribly claustrophobic, and I was aware enough to realize they’re sliding me into this tube, and I freaked out. I mean, I can remember the I can remember hands on me. I can remember the tube, and I can. Remember what to me sounded like the Wicked Witch of the East or the West, whatever it was from the Wizard of Oz movie, just screeching at me, stop moving. Stop moving. You’ve messed everything up.
Carolyn Routh 10:12
They ended up drugging me when they put me in and then when they found the clocks I stayed they had me totally knocked out like for three days, just to try to give my brain time to heal. And they had apparently told Daniel that when I woke up they didn’t know what my cognitive ability would be at that time, what my memory would be. They were kind of preparing him for the worst.
Carolyn Routh 10:35
So it was three days, and when I finally woke up, I saw somebody going out of the room. I caught it out of the corner of my eye, and I spoke to him. I, you know, cried out to him, and they came in there and checked me and got Daniel in there. And I remember the first time that I saw him after that, the door was behind me, and he had come around the door and walked to the end of the stretcher and, sort of, you know, touched my foot and said, and said, Do you know who I am? And I just started crying.
Bill Gasiamis 11:03
We’ll be back with more of Carolyn’s remarkable story in just a moment. But first, I want to take a quick moment to thank Banksia tech for supporting this episode. They’re the distributors of the Hanson rehab glove by cerebro. This one here that I’m holding in my hand, a clever piece of tech that helps stroke survivors regain hand strength and function right from home. If you’re working on your recovery and want to know more, there’s a link in the show notes. All right, let’s get back to Carolyn and how she learned to face fear with courage.
Carolyn Routh 11:34
Because I remembered him and so it was that was another one of those moments in life that really stands out in my mind the first time I saw him again and realized I was kind of back in the world. So those few days though I have, I have really no memory of I have, I have flashes. They would wake me up every so often to make sure I would wake up. But that’s all, nothing was clear.
Carolyn Routh 11:57
Then I would have a little bit of reasoning skills to know how I’m waking up, but I thought somebody was trying to kill me. That’s where my brain was. I thought they were trying to kill me. Thankfully, we were not.
Bill Gasiamis 12:07
They were doing the opposite. So you’re, you know, when you said you ex, you kind of resigned. Was it resigned to the fact that something’s happening to you? Don’t know what’s happening. You just kind of let it happen. Was that acceptance? Did you know you were having a stroke? What was that? Was it just resigning to the fact, or was it that you would just wear cognitively not capable of processing everything?
Carolyn Routh 12:33
What triggered that mostly was I had been seen a new endocrinologist for my diabetes, and my blood glucose levels had not been in very tight control. There I was just at one of those points in life, they were just kind of crazy. And I remember him emphatically telling me over a few visits, you’ve got to get this under control, because if you don’t, you’re going to have a low one day, and you’re just going to you’re just going to be in a coma, you’re just going to be a vegetable the rest of your life.
Carolyn Routh 13:00
And that’s what I was thinking when that happened, and I couldn’t talk and I hadn’t did have a low blood sugar about the time that this was happening at home, and they had treated it, they’ve given me orange juice. So it wasn’t, it wasn’t a blood glucose thing. It was the stroke. It was all of that starting. But for me, when I just kind of gave up there at the hospital to begin with, in my brain. I was actually because of my blood glucose being low, I done it. You did this to yourself. This is your fault. It finally happened.
Challenges and Deficits Post-StrokeCarolyn Routh 13:30
What this doctor was saying, you’re just going to be a vegetable the rest of your life, and that’s what I was believing. So that’s why I gave up. And you know, what can you do about it at that point?
Bill Gasiamis 13:40
Yeah, going with the flow is probably the only thing you can do, and hopefully the flow goes the right direction and it goes in your way. So were you dealing with type one or type two diabetes?
Carolyn Routh 13:51
I developed type one when I was just before I turned 11 years old, and I’ve been living with that essentially my whole life.
Bill Gasiamis 13:58
And what does it do? What is the dangerous part of it? Because I understand type two. It’s people’s pancreas not being able to generate insulin or becoming or the body becoming insulin resistant, where it doesn’t matter how much the body tries, they can’t deal with the high blood sugar levels due to diet and due to your consumption of food, right? So what is type one all about?
Carolyn Routh 14:26
Type one, essentially, my pancreas is dead. It doesn’t do anything. It produces zero insulin. So I have to take insulin. When I was younger, I took insulin shots. That was way back before insulin pumps. In fact, I can remember the very first Medtronic insulin pump that was invented, and they were pushing me to go on. And at that time, they were very large, and I was a child, and I didn’t want to carry this thing around all the time, so I started taking shots. And that’s, that’s totally where I get my insulin is from shots. And I do have an insulin pump.
Carolyn Routh 14:59
And now I’ve been on this since 1992 and it was a life changing experience, because now I can program how much insulin I’m getting, so I don’t have to constantly take a shot. I do have a blood glucose monitor that gives me in real time where I’m at so that I can adjust as necessary, but type one is an entirely different beast than type two. It’s like night and day, a lot of type two. Like you say patients can control it with diet, and a lot of people do, and there’s a lot of oral medications and things like that.
Carolyn Routh 15:34
Now, medical science has come a long way in treating type two, unfortunately, since they’re unable to revive your pancreas, they can’t do much for curing type one. They have just come up with a lot of ways to make it easier to manage and be able to live a more normal life when you’re type one. But there’s, there’s always that insulin issue if you don’t have enough insulin, like with type two, and your blood sugar gets really high. If it gets too high, it causes a condition called ketoacidosis, which can be deadly.
Carolyn Routh 16:11
It can cause you to go into a coma, and can kill you from lack of enough insulin. The reverse of that is low blood glucose, which is insulin shock and is a genuine emergency. High blood sugar, you need to get it taken care of, acidosis, you need to get it taken care of but you’re not going to die instantly. With high blood sugar. When your blood sugar drops, if it drops too low, you’re you’re essentially starving your body of oxygen. Works without oxygen, so it goes too low, you start feeling it in your extremities, you know, you’re dizzy.
Carolyn Routh 16:47
Different people have different symptoms that they notice, but it’s a big difference, and that’s when you have got to immediately treat it, or you could die very quickly with low blood glucose reading a lot different.
Bill Gasiamis 17:02
Your doctor was. Were your doctor saying we’ve got to get this under control? As in, there’s some kind of thing that you’re doing that’s making it worse? Can you make type one diabetes worse by diet or lifestyle or anything like that? Or is it simply you’re not taking care of when you’re taking your insulin and how much insulin you’re taking. What’s the issue with it?
Carolyn Routh 17:28
That’s all involved in it? You need to follow a diet of some sort of another to be able to control blood sugar spikes. You also have to manage your insulin, because, like you say, if you get too much insulin, that throws you into insulin shock, which is low blood glucose, that is immediately deadly, or if you’re not giving yourself enough insulin, or if the insulin level is where it needs to be, but you’re overeating, that can cause your blood sugar to go high and put you in ketoacidosis. So it’s a constant, it’s a constant vigil to try to balance your diet with your insulin intake.
Carolyn Routh 18:07
And it can go either way, but the two, the two are in this dance all the time, and you’re you’re trying to figure out who’s leading, not the one you want to be leading.
Bill Gasiamis 18:19
Sometimes you have human times, and then you just do what you need to do to feel good in the moment, and then you pay the price later.
Carolyn Routh 18:26
Well, exercise can affect it, or does affect it? Emotions can affect it, like if you’re really upset, if you get depressed, if you’re in a happy place, your emotions can have an effect on where your readings are too. Yeah, it’s a very complicated, very complicated disease, and a lot of people don’t understand it. A lot of people just automatically go because you hear more about type two, really, and about controlling it with diet and meds. And so most people, if you tell them you’re diabetic, their brain goes to type two.
Carolyn Routh 18:59
Well, can’t you control that with diet? I only wish it would be so much easier, if I could just control it with diet. So it’s a constant education, an educational process, too, with people that just don’t understand it.
Bill Gasiamis 19:15
Absolutely and then, and then you decide that you’re going to have a stroke, and now you’re dealing with type one diabetes, but you’re also dealing with what stroke caused? What did it cause to happen to your body? Any deficits that you’re dealing with?
Carolyn Routh 19:28
Well, when I first stroked, like I told you before, I lost my speech. I was just garbled with my speech. Couldn’t make sense of anything. I lost my right side, my total right side, which was really tough, because I’m right handed, so that made a big difference. And the first thing that came back when I woke up was my speech. Thankfully, I got my speech back very quickly, because I’m a vocalist, and without my voice, I mean, I was really devastated over that. And maybe more than losing my right side. Not that I wanted to not have that. But you know, you can roll somebody on stage if you need to.
Carolyn Routh 20:07
They can sing. You just you can’t replace your voice. So my voice came back first and then with my right side. I had to go through a lot of physical therapy and occupational therapy, physical therapy with my legs and learning how to walk really went very quickly. They had me walking within a few days before I left the hospital, I was able to walk. Now I was doing what I refer to as the grandma shuffle. Both feet are on the floor, and you just kind of shuffle along. And I remember one day when they were walking me down the hall with all the straps on me.
Carolyn Routh 20:41
So if I fail, and I’m just sort of shuffling around. And I thought, you know, I may have to walk this way for the rest of my life. And for about a split second, I started to feel sorry for myself. And then I thought, but I can walk, you know, it’s okay if I have to walk like this, I can still walk and get around my the occupational it took a while for my hand to come back. They had told me that I wouldn’t be able to for a long time, and I may never be able to button my shirt, zip up pants, tie shoes, brush my teeth, eat any of that stuff.
Carolyn Routh 21:13
And so when I left the hospital, before I left the hospital, and it took me about an hour to do it, but I did every one of those things getting ready to go home from the hospital. I was just so determined that I was gonna do this. I went probably for about four weeks, which ended up being about six occupational therapy visits, and at that point, they just turned me loose and said, We can’t do anything else for you. My grip strength was higher in my right hand, where the stroke it affected than it was on my left hand.
Carolyn Routh 21:41
So, I was really fortunate. I attribute part of that to just sheer tenacity, of just being determined that I was going to get better. Of course, Daniel was pushing me the whole time. You can do this yourself. You can do this yourself. I now have this is strange, but if I’m going to sign an autograph, or if I write anything, I have to focus on what my hand is doing and every movement that my hand makes.
Carolyn Routh 22:07
I couldn’t sit here with you right now and be jotting something down or writing something down on a piece of paper while I’m talking to you and focusing on you, I would have to stop and focus on my hand to be able to write again. So it’s little things like that. My husband says that my memory is a lot worse than it used to be. But what’s a husband going to say? That’s his act, you don’t remember.
Bill Gasiamis 22:28
I told you that. Why don’t you listen to me when I say something?
Carolyn Routh 22:32
So I don’t know if I can put much stock in that or not. That’s that’s an argument he and I have occasionally.
Bill Gasiamis 22:38
I wouldn’t believe him either. Well, your timing, honestly, it’s really lovely to hear your outcome, because your timing to have the stroke when you did was, you know, the best timing ever. If something bad is going to go wrong, well, then you may as well just be in the best place when it happens. And I think that’s exactly what happened to you. So it’s not a surprise that you got so much back so quickly as your brain starts to heal and everything starts to kind of, the inflammation starts to go down, and everything gets treated.
Bill Gasiamis 23:10
Waking up those neurons again with therapy and rehab and all that kind of stuff is just beautiful, like perfect. That’s, you know, we very rarely hear such amazing like good news stories after stroke, there’s always a challenge. And I’m not saying that you don’t have your own challenges. Now with it, of course you do, but it’s so much better when things go bad, things go the right way. I don’t even know if that makes sense.
Carolyn Routh 23:34
It was a miracle. I mean, I tell people a lot of times even more on stage and I talk about it, you’re looking at a walking, talking miracle, because it could have gone a lot worse, a lot worse, so many things. And I try not to think about that, because I just want to focus on where I’m at now and getting through it and coming out the other side, not to dwell on the what could have been.
Bill Gasiamis 24:00
Absolutely there’s no point in that, because it never was. So it doesn’t mean anything. What could have been, you could, you could do the whole, you know, it’s interesting. Sometimes I do this in the car, you know, when there’s a close call and we nearly have a collision, right? But, but we didn’t have the collision, because even though I or the other person made the mistake, we were able to realize what action we needed to take immediately to avoid that collision from happening. And nothing bad happened. It was fine, and yet you still get all worked up about it.
Bill Gasiamis 24:33
And you know, you shake your hand at the person that was driving potentially having done the wrong thing, and you think that that’s the right response, and it’s really not, because it was avoided. Nothing happened. So that’s, you know, it nearly happened. I mean an inch away. Well, you’re that doesn’t mean anything. You may as well been two kilometers away. It doesn’t make a difference. But I love what you’re saying. How about you. So who’s the biggest person? Who was the person in your life motivating you the most?
Carolyn J. Routh Stroke Recovery – Emotional and Mental Impact Carolyn Routh 25:06
Daniel, definitely. He’s the one that got me started playing bass. Turned out to be, and it was a little bit after the stroke, but still, again, with my hand. You know, I’m always, I’m always working on my hand and making sure that I still have the dexterity and things like that, and focusing. Have to focus a lot of mental power on my hand, and so play, learning to play bass was a great therapy for me, because it was engaging both hands at the same time. It was engaging my mind.
Carolyn Routh 25:37
And he’s, he’s the one that did that, he’s the one that pushed me to that he was always the one that was there for me to cry on his shoulder when I just felt defeated. Because there’s always those times there’s there’s always those times that you’re having a really bad day or or things just aren’t going right, and you have those moments. You have those moments of defeat, and it’s the best thing in the world when you’ve got somebody there, especially somebody that’s been there from the beginning and knew you before this happened, so they know where you’re coming from.
Carolyn Routh 26:07
And they know where you’re trying to get to. So he definitely, I got mad at him a lot of times when he was pushing me, because it’s like, just leave me alone. I can’t do that right now. But he kept pushing in a good way, in a positive way he kept pushing me, and it turned. He still teaches me a little bit, and I don’t know if he needs to now.
Bill Gasiamis 26:27
He probably does.
Carolyn Routh 26:31
He’s still my best friend through everything.
Bill Gasiamis 26:33
You can get mad at him still. I think you have permission to, you know, it sounds like you guys have permission to push each other, get mad at each other, get over it, and move on and and then notice the growth. That’s the beauty of it, right? Is notice there has been growth like I think for me, my wife’s not a pushy, pushy kind of person, but there’s been growth after the stroke, both mine and hers, because she had to deal with a stroke survivor at home who was quite debilitated for a long time, because it was about, you know that the difficult parts for us lasted.
Bill Gasiamis 27:13
One stroke in February 2012 another one in March 2012 another one in November, 2014 and then brain surgery. So the really extended period of time in the acute phase, you know, where shits going wrong all the time. And then after that is when we kind of start to learn how to Okay, let’s try and move back into routine, some kind of life, etc. But even then, she doesn’t have the experience to be a caregiver of a stroke survivor. She’s not a nurse, she didn’t study, she’s not a doctor. So that was interesting.
Bill Gasiamis 27:49
To go through all of that and we had to grow, because you couldn’t be the same dumb ass that you were before the stroke. At least I couldn’t, because it didn’t work. It wouldn’t work. You know, when you say emotional upset makes your diabetes worse. So does emotional upset during and after stroke and stroke recovery. It makes things worse. And the idea was to learn how to stop being emotional when it wasn’t necessary.
Bill Gasiamis 28:15
And then to be practical and to attend to the emotional part, the part where you’re feeling upset, mad, sad, whatever it is, so that you can not allow it to affect you in a negative way when you’re going through a tough time trying to heal your brain and and get your deficits under control somehow or recover somehow. So I love that you guys had the opportunity to dance around that time we did.
Carolyn Routh 28:45
Yeah, we did. It was, I don’t know, I don’t know where I would have been if it wasn’t for him in there and helping me through it. And even now, even now, he kind of, you know, when I’m having trouble writing or anything, sometimes he’ll sort of, for lack of a better term, take the blame. If I’m taking too long on something, you know, he’ll sort of field it for me so that, so that people don’t look at me strange. He’ll deflect, right? He’ll come step in and intervene and take, take some of the heat for me, if it ever becomes necessary.
Bill Gasiamis 29:15
I love it. That’s excellent. So what were the biggest challenges that you faced? Now, I know that you had a number of deficits, but what would you describe as the one that was the biggest challenge to deal with, with regards to stroke.
Carolyn Routh 29:28
Just being able to get back into my normal routine in my life without being scared all the time, because if I had the least little bit of a headache, or even if I didn’t really have a headache, but I was just sort of feeling bad That day, my mind always went to “Oh my gosh. Am I going to have another stroke? What am I going to do?” You know, do I need to be here? Be I just that probably was the hardest thing to overcome. More so than the physical, was the mental games and just being terrified that I was going to have another stroke or another seizure.
Carolyn Routh 29:59
And I have another seizure. Seven years post stroke, I had been fine, no problems at all, and all of a sudden, I just seized one day, but I was not on any medication. I wasn’t on any kind of suppressors, because I had gone for several months and not had any strokes that I kept pushing my neurologist to not be on it, because my mom has seizures, and she had been on Dilantin all of her life, and it had really played a number on her body with several things. And I didn’t want to do that, because I felt I’m still so young, I don’t want to go there.
Carolyn Routh 30:33
So he agreed to take me off of it, he said, but you can’t drive for three months. You can’t do this. You can’t do that. We got to make sure that this isn’t going to happen again. And it didn’t. I had no problems after three months, not three months. It was six months. After six months, I was fine, no sign of any any abnormalities. And then seven years later, I just had a seizure. That was another one that happened at the perfect time. I was in the bedroom, and I was walk, fixing to walk out of the bedroom and back into the living room, where Daniel was at.
Carolyn Routh 31:06
I started, for some reason, I just felt my legs start to tighten up, and in my mind, I thought, you’re going to have a seizure. And I launched myself onto the bed as I screamed for Daniel. And He came in there, and I’m half on the bed and half off season, and he got me to the floor and called the ambulance for me. But again, that could have been very bad. I could have fallen. I could have hit my head on or hit my head on a piece of furniture. Had a head injury from it, so I was really lucky. But even now, even now that I’m on seizure medications, because that happened again.
Carolyn Routh 31:41
I want to be on them now, because I don’t want that to happen again. There’s still that place in my brain that sometimes I’ll still go to, I’ve got a headache. Is this okay? Or or have a weird headache, like my pre stroke headaches were where they actually move. They’re in the back of my head, and the headaches would actually move. And I’ll have those occasionally, and I always tell Daniel, I’ve got this headache. It’s doing something else so that, God forbid if something else happens. He knows, he knows the symptoms that were happening before the incident.
Bill Gasiamis 32:15
Yeah, I have headaches all the time. It’s my I mean, it’s such a conversation. That’s all I bloody talk about, is the headache this, and the headache that, and I’ve been talking about it for years. I think I’m trying to remember when I first started sort of really talking about headaches post stroke, and it’s taken me, probably, I don’t know, maybe four or five years to discover that it was high blood pressure.
Carolyn Routh 32:41
Wow.
Navigating New Battles After Stroke RecoveryBill Gasiamis 32:42
Yeah, so recently, I got diagnosed with high blood pressure because the headaches were so severe. They were taking so that they were around for so long that I couldn’t do anything. I was, you know, my whole days would go in, you know, thinking if I do this, if I do that, or if I avoid this, or if I don’t go there, or all sorts of things.
Bill Gasiamis 33:03
And became high blood pressure was the issue. Took the meds, and then, as a result of that, the headaches go away. The blood pressure is under control. But when I was being die, when I was going through it for five years, or whatever it was, there would be spikes of high blood pressure.
Bill Gasiamis 33:19
So it wouldn’t last for days. It would last for a few hours, and then it would settle down. It would last for half a day, and then it was settled down for a few days. And I had days in between where everything was fine for a long, long time, and now it’s just ongoing and constant. So now the battle is, how do you you know, Can I do something to improve my blood pressure? But I’m not overweight, I don’t smoke, I don’t drink, you know? I haven’t got any of the risk factors. And it’s like, well, I can’t cut out that stuff to improve my health and well being.
Bill Gasiamis 33:52
So what do I do? What else is there? So now we’re doing a barrage of tests to discover, is it because my blood vessels are closed up. Is it because of some other condition? Is it a liver issue? Is it a kidney issue? What are the issues? So we’re trying to get to the bottom of it, and it’s a bit of a blow to me. Like, I kind of said to my wife, I had a bit of a pity party moment. I said, like, how much more shit Do I have to deal with? What else has to go wrong? You know, like I’m over it. I just want to have a smooth run for a little while.
Bill Gasiamis 34:25
I don’t want to think about another headache. Could it be this? Could it be that? But it is not my journey. Obviously, I don’t get to choose, but I get to take action and respond and be proactive about, how? About how I might be making things worse. So I get to have a opportunity to reflect like, okay, am I I’m not, but if I was, I’d be able to go like, am I smoking? Should I stop that? Am I drinking? Should I stop that? And so on, but, and now it’s like other things, so looking deeper to find more things that might be and all.
Bill Gasiamis 34:59
Also accepting the possibility that maybe it’s just me and my body, and the fact that I am here on the planet where, if it was any other generation of mine, you know, before us, medical help for Brain Hemorrhage wouldn’t have been available in the way that it was for me. So maybe, you know, maybe I’ve dodged one bullet, but in but I have to deal with all the stuff that comes with life, the gift of life after stroke, and that part of that is you have to jump over more hurdles, I don’t know.
Carolyn Routh 35:34
It’s the great mystery of life.
Bill Gasiamis 35:35
It certainly is. And that’s, you know that’s, that was my little philosophical rant. You know that my lovely philosophical rant to try and wrap my head around, because that’s what I find myself doing all the time. And my mum’s favorite question is, how’s your head? And it’s like, it’s good today, Mom, it’s good. Ah, thank God, she always does that. Oh, thank God.
Bill Gasiamis 35:57
And as I we’re on top of it. I’m handling it, I’m taking my meds, and I’m making sure that I’m that I’m not being slack about it, because I’ll tell you what it’s I don’t want to go down that path again. We’ve been there, done that. We just want to move on, right? We want to get on with our lives. Did Did you have a rock bottom moment where things felt like real bad and you didn’t know if you were going to be able to get back to life.
Carolyn Routh 36:25
I don’t think I would call it one rock bottom moment. There were a lot of days, there were, there were a lot of days through that entire time period that I felt like that. You know, am I ever I’ll give you an example, and this is, this is minor compared to everything else, but it was major to me at the time. It’s amazing how many things really aren’t that big of a deal, but when you’re going through that physically and mentally, it becomes a big deal in your mind. So not long after I came home, I had gotten lots of emails and well wishes from a lot of family and friends and some people.
Carolyn Routh 37:04
Just from that I’ve met on the road with the band, and I told my family, don’t answer any of those emails. I want to be the one you know. Don’t delete anything. I want to go through. I want to read every email, and I want to respond. When I came home, I couldn’t sit up for very long. There were no laptops. There was just the desktop computer. And so sporadic times I would feel like sitting up for a while, and I would go, go through these emails, and I would read one and “Oh, it’s so sweet” And I want to respond to it, and I couldn’t type.
Carolyn Routh 37:35
Anyway, I’m a hunt and peck or typing. So I would think, Okay, this is what I want to say, and I’m looking at my fingers very, very meticulously and hitting the letters and the numbers, and I finally get this sentence all the way out, and get my hand working, and I would look back at the screen and there were no spaces in the sentence. And I’ve always told everybody, the space just fell out of my head because there were no spaces in the Senate.
Carolyn Routh 38:00
And I got so frustrated at that, and that was another thing. Am I ever going to be able to put these pieces together? Am I ever going to be able to sit down and write a letter to somebody or type something to somebody, you know, just the normal things that you don’t think about in life. You don’t think about when you want to write something down, you just write it down. There’s, there’s not really a lot of thought process that goes into that, other than composing it in your brain. And I couldn’t do those things the the simplest things in life. I had to struggle with eating.
Carolyn Routh 38:32
I still had to struggle picking up a fork. I could eat with the fork myself, but I still had to think about every movement of my hand and what I was doing. And that was very frustrating, because I had always been very independent, you know, leave me alone. I’m going to go do what I want to, and it’s my life. I’m going to I’m going to go do this, and I couldn’t do that anymore. I had to kind of be chained to my circumstance. Yeah, that was really tough sometimes.
Bill Gasiamis 38:59
You know the no spaces thing? That I get a lot of comments on YouTube with no spaces.
Carolyn Routh 39:06
Yeah, hey, somebody else is dealing with this too.
Bill Gasiamis 39:08
Yeah, they definitely are, because and typing and rewriting and all that kind of stuff becomes a challenge, and it was for me for a short amount of time. But, yeah, it’s very interesting to come across a slab of writing with no spaces whatsoever in between.
Carolyn Routh 39:25
Yeah, that’s how I felt when I looked at my own writing. I wouldn’t let it go out with that. Now I got to go back through and I got to find where the space is supposed to be. Some of those times I would, I would just work on one thing, and then I had to go lay down, because I still had trouble sitting up for long periods of time. Then, because I just, I mean, you know, your hope it has such a great effect on your entire body. You’re just exhausted all the time. At least I was. I had no strength. And I don’t know if that was totally because of the strokes, or if it was just.
Carolyn Routh 39:56
I just been down for so long, and even then, y’all couldn’t get up and. Exercise. There’s a lot of things that I wasn’t able to do. I was walking, but I wasn’t walking very well, and there was just so many components going on that I’m trying to piece together and make work again. So it was very challenging to go through that.
Bill Gasiamis 40:18
Yeah, but absolutely, it doesn’t never stop getting challenging. That’s what’s really interesting. What What have been some of the strengths that you’ve discovered in yourself that that you didn’t know you had?
Carolyn Routh 40:28
I always knew that I was a very determined person, but I think I learned just how hard headed I was just pushing myself. Obviously, Daniel was pushing me a lot, but pushing myself to try to get beyond mentally and physically, and I found I had a lot more strength than I thought I had to be able to do that and get there. And I’m a really emotional person, and I let my mind play a lot of tricks on me, and I don’t smoke or drink either. So it’s not that, you know that I’m doing something that’s causing that. It’s just my brain, and I am a what effort person.
Carolyn Routh 41:10
So my mind gets to going and all that stuff, and I just really have to take a step back and not do that. And a lot of times I’ll go back to the point that I was at when I had my strokes, and think, you know, I feel like I didn’t die then, because I still have a purpose in life. And I try to remind myself of that all the time. You know, you this bad stuff didn’t happen to you, because you’ve still got to be here.
Carolyn Routh 41:36
So that’s a that’s a strength, I think that I’ve found somewhere to go when I’m in one of those emotional moments and I’m strong enough to go there and bring myself out of that place that I’m at that was a big deal for me. That’s still a big deal for me, because I just I get so upset over the least little thing and trying to hide that’s tough too.
Life After Stroke and Band Activities
Bill Gasiamis 41:58
Yeah, that’s important to be able to go somewhere and just stay there uncomfortable and just alright, I have to be here for a little while, and then I’m moving on. I’m not going to stay there forever, but I’m going to experience the feeling and then work it out later. That’s the thing. Being comfortable with being uncomfortable is kind of how I sort of see it, and then going, okay, alright, I may or may not have learnt something from that.
Bill Gasiamis 42:24
I’m moving on now, and we can let it go and then tackle the next thing when it comes when it comes up. So the band I’m looking at the website, NU-BLU.com (nu-blu.com) that’s a good looking band there.
Carolyn Routh 42:41
Thank you. I’m really proud of those guys. They’re just awesome. They’re family, now traveled together so long and experienced so much of life together.
Bill Gasiamis 42:51
So how do you guys go about getting gigs? It seems like also you’ve got a section for free music. You’ve got a, I imagine a paid section like, how does the band work? What in this day and age when the music game is controlled by Spotify and iTunes and people like that? How do you guys create a successful career or a band?
Carolyn Routh 43:16
Touring. We tour very heavily. Daniel does a lot of the booking. Primarily booking that he does is for more bluegrass events, because he’s done that for so many years, and he’s got so many connections in that field. We have a booking agency in LA called Harmony artists, and they do a lot of PACs and fairs and like business conventions and things. And they have really, they, they’ve really come on and sort of taken us into an entirely different circle working than we were at. So that’s that’s a big thing. It’s just touring for income. Streaming, that’s where it’s at.
Carolyn Routh 43:59
Now the sad part? Well, the good part about streaming is more people hear your music, which leads to more people coming to shows, which leads to more ticket sales, more income. However, the challenging thing with streaming is streaming pays very, very little per stream. I mean, it’s like hundreds of a cent or less that you get for each play on most of these streaming platforms.
Carolyn Routh 44:23
So you’re not really, you’re not really making anything off the music, unless you’re one of these huge, mega stars that you know, sell millions and millions and millions of records. When you used to have physical product, we do still have physical product on our table. Hold on a minute. I got somebody calling in. I’m trying to get away from this. We still do have physical product on our table, but we don’t sell as much of that now that’s one of those things that has just kind of fallen by the wayside.
Carolyn Routh 44:52
Daniel always said, when CDs finally went away, it would be when car manufacturers stopped putting CD for. Players in cars, and that’s about what happened, because people would come and they would buy they would come to the table and meet the band and buy a CD, and then they would stick that CD in the player on their way home and listen to the music. And now there aren’t CD players, and a lot of cars and people, people resort to streaming.
Carolyn Routh 45:20
It started with the younger generation, for lack of a better way to put it, but it’s really spread, and most people are going to streaming platforms now to hear their music.
Bill Gasiamis 45:31
Yeah. So what’s really cool is, I’m looking at your upcoming today. What is today the October the 16th, where you are, because it’s October the 17th, where I am, it’s the 16th. So you, you’re playing a gig tomorrow, the next day, six days after that, seven days after that, and so on. And you guys have got shows booked out until February 13, 2026
Carolyn Routh 45:57
Yeah, and that’s a light schedule right now. They’ll still please to fill in on that. They’ll they’ll still be more shows to to fill in on that schedule. So and I, I never know when something’s going to show up that he’s booked. I don’t. I always tell everybody that my job in the band is to be on the bus at the right time. Know when to get off and play a show and then get back on the bus again. He does all the routing and all that fun stuff so that I don’t have to worry about it. Yeah, good partnership like that.
Bill Gasiamis 46:28
How much time do you guys spend away at any one time? What was the maximum amount of time?
Carolyn Routh 46:33
When we first started back in 2003 we actually went full time in 2011 we we quit our day job, so to speak, and went full time in 2011 and when we did that, we would make seven week runs at the time. We go out for seven weeks, we’d come home for three or four days, and we were right back out again for five, six or seven weeks. So it was a very, very grueling schedule. We spent, we live on the east coast, in North Carolina, we spent more time on the West Coast, in California and Washington and Nevada and all those states than we did on the East Coast those first three or four years.
Carolyn Routh 47:10
Again, very grueling schedule. Now that we’ve been at it for a while, we finally come to a point that the most we ever go out at a time is usually two weeks or less, and then we come back home, we’re home a week or so with just, you know, weekend stuff. And then we’re we’re out on the weekends, but we’re not out on these really long trips like we were before. We average about two 200 – 250 days a year on the road, give or take.
Bill Gasiamis 47:39
Wow.
Carolyn Routh 47:40
Yeah. We travel in a bus, though. So it’s my home away from home, and that makes it a lot easier. I don’t think I could do it, having to fly and hotel hop. I just don’t like airplanes. I hate to fly. I’m not very fond of Heathrow is a big Air Force. There’s a lot to navigate, especially when it’s international.
Bill Gasiamis 48:04
You guys are amazing. So life after stroke is pretty full on for you.
Carolyn Routh 48:09
It is, and I that’s really a good thing, because it does keep my mind occupied with positive things, because I love to go play. I absolutely love what I do. I don’t think there’s a lot of people in this world that get to do what they love for a living and just just be out and go and do and I love the travel. I’ve got to see so many things, so many things that I never thought I would get to see in this country. And I was in Paris two years ago, and I never thought in my life I would stand under the Eiffel Tower.
Carolyn Routh 48:41
So, that was a real rush. We saw Stonehenge. We actually were driving around London the day of the Queen’s funeral. So that was, we talked about going to it, and I just, I could not get there’s crowds. I absolutely could not so, but it was, it was pretty neat to know that that was going on and we were right there.
Unknown Speaker 49:00
Well, yeah, what’s the deal with crowds? Just overwhelming.
Carolyn Routh 49:04
The time that it takes to get in and get out, and just so much chaos. And I knew that that was going to be chaos and standing that long. And I love people. I love being around people, but when people are shoved in like sardines, I get really uncomfortable. I always tell everybody I don’t mind crowds. I just love them more when they’re in front of my stage than if I’m in them. That’s all it is.
Carolyn Routh 49:33
It’s just a discomfort for me, just being packed in so tight for so long. And, you know, covid came along and it was the six foot rule. And I’m like, you know, I don’t mind this so much. I still have my space, but I can see people. I can talk to people.
Bill Gasiamis 49:48
That worked well for you. What sort of crowd sizes attend the shows?
Carolyn Routh 49:53
It varies depending on where we’re at. I would say average for most like theaters. Or something like that. We play a lot of 300 – 400 seat theaters. They’re not huge, but they’re really nice size. You know, sometimes there might be 100 people in the audience, sometimes there might be 300 people in the audience. We’ve played venues that there’s like, eight to 10,000 people at some outside venues. So there’s a really broad range. And we also occasionally do house concerts where you might have 20 people in the room or 30 people.
Carolyn Routh 50:27
And believe it or not, those are a lot of fun because it gives you a chance to get more personal with people and connect. And I like that. I like doing some of the small stuff too, and being able to make new friends and actually get to know people a little bit.
Bill Gasiamis 50:42
Some of my most favorite things that I’ve attended were small, intimate, whether they were musical shows or theaters or whatever they were and plays. And it’s because you get to really feel like you’re part of the action. And then you get to meet your you know your hero, and you ask them questions, and they answer your question. And it’s really fun. I love it. We did. We had an opportunity to go and watch a theater in Melbourne quite a few years ago, which was about the famous Greek American opera singer Maria Callas, who lived in the 50s, 60s and 70s, and kind of.
Bill Gasiamis 51:23
She even married Aristotle Onassis, who was Jackie Kennedy Onassis husband. So, like, it was a she was a big deal. She was the biggest opera singer in the world. Anyway, the play about her was done in Melbourne, and we went along and saw her, and the actress that played her was just phenomenal, like it just felt like she had embodied this person. And we were sitting in the front row of this theater, which maybe held, I think it might have held maybe 200 – 300 people.
Bill Gasiamis 51:53
And what was and is, if the show and her performance and the performance of all the other actors wasn’t amazing enough. There’s a part in the in the presentation, where she picks a few people out of the crowd and interacts with them, as if it’s part of, you know, a live teaching so, so the way it was set up, she was pretending to be the show is about her teaching some students how to be artists, opera singers, etcetera. And it was done like as if you were at a university and then you were in the audience.
Bill Gasiamis 52:30
But you were a student listening and learning from her presentation, that kind of thing. And then she picks me out, and she points at me. She goes, you seem to have a laugh on your face all the time, and somehow she made that part of the show. And what a treat that was. It was such a, you know, it takes, and I’ve been to heaps of shows, but that one is even more special, you know, because you become part of it.
Bill Gasiamis 52:54
You interact with the audience, and it’s just brilliant. So I know what you mean about those home shows? I couldn’t imagine anything better than having my favorite band in my backyard. That wouldn’t be anything better than that, even if I and if I could do it without anyone else, then I just had them to myself. That would be amazing.
Carolyn Routh 53:16
You can make that happen. If you have enough money, they’ll come.
Bill Gasiamis 53:18
Well, one of my favorite bands is ACDC, so they probably won’t need to, but they are touring in Melbourne in about a month, and I’ll be going to see them for about the sixth or seventh time.
Carolyn Routh 53:29
That’s awesome. My son, we were on the road somewhere, and I get this phone call from my oldest son, and all I hear is this really loud music, and I’m like where are you at? He said, ACDC, I’m going to kill you. I didn’t get invited.
Carolyn Routh 53:46
Axel Rose was singing with him. We got a big treat there, getting to see Axl Rose along as ACDC.
Bill Gasiamis 53:54
Wow. Okay, yeah, so I think this is probably going to be one of their last tours. Angus Young is just like an old man. Now, Brian Johnson’s struggling with other challenges. So if they pull it off, I mean, it’s going to be amazing, and maybe the last time. So we’re, I’m sure it’ll be great. Ah, it’ll be sensational. I first time I saw them, I was a teenager, and it was for the money talks to her. I had never seen anything like it. I just, I was just blown away. I couldn’t believe that I was there. And then that particular album cover had a fake American dollar with Angus on the in the middle.
Advice for Stroke SurvivorsBill Gasiamis 54:32
They threw them down from the top of the ceiling, and everyone was running around to pick up the Angus money. And it was sensation. I still got a couple of those in my album cover. Now, maybe it doesn’t matter. I’m not getting it, rid of it. I’m keeping it right. So, yeah, fantastic. I love it. I love it that you are able to perform and do the tour and be on the road as much as you can, and you’ll live. And you know, you’re living your life, and I love that it probably is more meaningful for you now than post stroke. I have a sense, it is.
Carolyn Routh 55:09
It absolutely is, because there’s, there’s things that I didn’t think I’d ever get to do, especially after the strokes. You know, who would have thought, who thought that I would be able to go to Europe and just travel all over this country, go to Mexico, you know, the Bahamas, just all those fun things that I get to do on a regular basis. Now, just a bonus, right? Absolutely, absolutely.
Carolyn Routh 55:34
The Grand Canyon, that’s probably my favorite place of any place I’ve ever been. I’ve been there multiple, multiple times, and standing on the rim of the Grand Canyon and looking out across it. No movie, no photograph, does that justice. It’s a totally it’s the Grand Canyon. Isn’t just a view, it’s a feeling. It’s a feeling that kind of reminds you just how small.
Bill Gasiamis 56:00
Yeah, and how insignificant you are and what and how it’s necessary to just tell your head to be quiet and forget the stories and just move on. Absolutely, yeah, if you if there’s something that you could share with people who are listening or newly diagnosed that may have come across this about your journey with stroke, what would you like to say to them? What would you share?
Carolyn Routh 56:22
Try as much as you can to stay positive, and that’s that’s a big thing to say, because the negativity will eat you alive from the inside, and that’s just going to add more difficulty to everything you’re going through. Something I like to tell people is, find your happy. And some days, that’s a lot harder than others. But if you look forward, if you’ll just find one little thing every day, just one positive thing. It doesn’t have to be major. Just one positive thing, it will help you through the rest of your day. Inevitably, that one small thing can help you through the rest of your day.
Carolyn Routh 57:01
So find your happy life is too short. I used to be horrible. When something would go wrong, I would say, I hate my life. Hate my life. This happened, and I hate my life. And then I had my strokes, and I figured out, I don’t hate my life. I love my life. I’m thankful every moment to still be here. And since then, I never say I hate my life. I haven’t said it since then. I will never say it again. I might hate the circumstance that I’m in at the moment. You know, I might hate something that’s happened, or I might hate a bite of food that I just ate. But I never say I hate my life.
Carolyn Routh 57:40
I think that’s very important, and the finding you’re happy is very important. If you just remember those two things, just put one foot in front of the other figuratively, and just push on to the next thing. Just keep pushing on. Don’t give up. Don’t feel like you’re at your end and there’s nothing left, because there is something left. It may not be what you expected it to be, but there’s something else out there.
Bill Gasiamis 58:07
You know, that allocating a word like hate to your life because of a moment, it’s such a trap that we find ourselves in. So that whole because that moment was shitty, you know, my life is shitty, and we don’t realize, I think most of the time, we don’t realize that we’ve done that. And to be able to have the distinction to go that moment was shitty, or that food was shitty, or that person was shitty, not all people are shitty, or not all experience are shitty. That’s it lifts a massive burden off your shoulders.
Bill Gasiamis 58:37
It actually is more accurate as well, because moments are shitty, but all the moments in between, they don’t have to be sort of wrapped in the same attitude that you had to the moment before, even 24 hours ago or 48 hours ago, or whatever. So that’s a really great distinction, I think, like people in recovery might have a lot of shitty moments, but pay attention on the moments in between that are not shitty, and do not tar them with the same brush, because then it films feels overwhelming, and that’s one way you can improve your mood.
Bill Gasiamis 59:14
Really simply, is just by being specific with what’s happening right now, rather than generalizing Yes. Carolyn, thank you so much for joining me. I thoroughly enjoyed our conversation. I really appreciate you reaching out. It’s great to hear your story, and I’m going to see if I can get some of your music, I think.
Carolyn Routh 59:35
Okay, great. Do you need me to send you any links? Because I can do that.
Bill Gasiamis 59:39
Well, why don’t we have a discussion about that right now? If someone went to get some of your music, where’s the best place for them to get it, where you guys get a little bit of the revenue, and it doesn’t go to the streaming services.
Carolyn Routh 59:56
Pretty much everything, pretty much everything right now is streaming, unless you want. You order a CD and order that from our website, new blue com, n, u, dash, b, l, u.com, so you can still order physical product directly from us. That’s where we get the biggest bang for the buck. But you know, if you’re going to listen to streaming Spotify, Pandora, Apple Music, I’m sure those others, those are the big three for me personally that I’ve got on my phone.
Carolyn Routh 1:00:24
But I know there’s a lot of other streaming services. Everybody’s got their favorite platform. So, you know, just go there, and even if it’s just a 100th of a cent, I want you to listen to the music. I want you to enjoy it. I hope you love every minute of it and pass it along to all your friends.
Bill Gasiamis 1:00:41
Yeah, do you guys ship internationally?
Carolyn Routh 1:00:43
Yes, we’ll ship internationally.
Bill Gasiamis 1:00:45
Wow. Okay, so the CDs start from 9.99, which is a mega deal, like, that’s a sensational and there’s, at least there’s six albums, and then there’s the way you’ve been vinyl and the way you’ve been CD. So there’s seven albums, and one of them is a vinyl.
Carolyn Routh 1:01:03
Yes, it is. That’s the first time we’ve pressed vinyl. That’s kind of exciting to us. You’re growing up. That’s all I listen to my ACDC. Vinyls are right over there. So vinyl was a big thing, even when it scratched. You get so mad that your your favorite vinyl scratch. So when we decided to press vinyls. It was so exciting. I remember we got in. They send you the test pressings that don’t have any of the artwork, just to approve them. And we got in the five test pressings.
Carolyn Routh 1:01:29
We had to buy a turntable. We didn’t even have one. And my husband went and got a turntable and put it on. And he was like a school girl. He was so giddy. There’s just something different about a vinyl, and hold it in your hand and to realize that, hey, we have a vinyl of us.
Bill Gasiamis 1:01:45
It’s tactile. You get to see it spinning, you know, you put the little needle on. It’s not like a CD where it goes into a little box and it disappears and you don’t really see it. It’s tactile. You know, you have to touch it a lot. You have to be careful with it, you know, you have to position the needle, you have to close the lid on the turntable. There’s so much to it. It’s brilliant and and then you get that, you know, crackly sound that the vinyl makes just before the track starts.
Carolyn Routh 1:02:11
There’s a lot more tone in vinyl. A lot of people catch that, but that whole process, it’s just different. It’s just old school. It. It it brings back a past era of when that was the thing, and everybody was so excited to go down to the local record shop and buy a record. So I think I like the where things are now. I like music being so readily available and people can listen to it, but I kind of miss those days of going to the store and buying a record.
Bill Gasiamis 1:02:42
Clicking through all the album covers and just going one at a time until you find something that you looks interesting. So for anyone watching and listening, go to NU-BLU (nu-blu.com) and go to the store, where you’ll be able to see those CDs and get them, and get one or two.
Carolyn Routh 1:03:04
And we’ve got, we got new music coming out. We’re working on a new CD right now, so it would be great. You want to listen to it. Go on to Spotify Pandora, any of the streaming platforms, Apple Music, and go ahead and like, join our page there, and that way, when the new music comes out, you’ll be one of the first to hear it.
Final Thoughts and Contact Information
Bill Gasiamis 1:03:21
Fantastic. Of course, we’ll have all the links in the show notes, so people can go there and find them and follow you guys on socials. Thanks so much for joining me. It is an absolute pleasure to have you on the show.
Carolyn Routh 1:03:31
Nice meeting you. Enjoy talking to you, whole lot.
Bill Gasiamis 1:03:33
That was Carolyn J. Routh, sharing her powerful story of fear, faith and determination after stroke, a huge thank you again to Banksia tech for helping make this episode possible. Their ongoing support and the hands and rehab glove by Cerebro keeps hope and progress within reach for stroke survivors everywhere. If Carolyn’s story spoke to you, remember, recovery isn’t about being fearless, it’s about moving forward despite the fear.
Bill Gasiamis 1:03:59
You can find my book, The Unexpected Way That A Stroke Became The Best Thing That Happened, at recoveryafterstroke.com. And to support the show, you can go and join our Patreon at patreon.com/recoveryafterstroke. Thanks so much.
Intro 1:04:14
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The post Carolyn J. Routh Stroke Recovery Journey: Overcoming Fear After Stroke appeared first on Recovery After Stroke.
Erectile Dysfunction After Stroke: One Survivor’s Courageous Truth About Intimacy and Bowel ControlWhen Anshul Bhadwaj collapsed at his gym in Delhi at just 27 years old, he thought his life was ending. The thunderclap headache, the dizziness, the vomiting he was certain he was having a heart attack. What he didn’t know was that his brain was bleeding, and the hemorrhagic stroke he was experiencing would challenge not just his ability to walk, but his sense of manhood, dignity, and identity.
What Anshul shares in this conversation is what most stroke survivors won’t talk about: the loss of erectile function, the inability to control his bowels and bladder, and the profound shame that came with both. But his story isn’t just about loss, it’s about the courage to speak openly about these taboo topics, the journey back to dignity, and the mission to ensure others don’t suffer in silence.
The Stroke No One Saw ComingAnshul was living the demanding life of a political journalist in India long hours, intense deadlines, and relentless pressure from his news channel manager. The stress was so extreme that even when he was hospitalized for hypertension in 2023, his manager told him to bring his laptop to the hospital and work from his bed.
“Life of a journalist in India is very stressful,” Anshul explains. “It looks good from the outside, but not good from the inside.”
That unmanaged hypertension, blood pressure exceeding 180/86 despite medication, was a ticking time bomb. On February 27, 2025, while working out at the gym, Anshul felt a sensation behind his brain, followed by severe dizziness. Within moments, he collapsed.
Because stroke awareness in India is remarkably low, no one at the gym, including Anshul himself, recognized what was happening. He thought it was a heart attack. Even when a friend drove him home and his father rushed him to a chemist, they were given electrolytes for what they assumed was low blood pressure.
It wasn’t until hours later, when his sister noticed he was having seizures, that the family finally took him to the hospital for a CT scan. The results were devastating: a brain hemorrhage. One junior doctor even said within Anshul’s earshot, “He’s going to die soon.”
The Loss That No One Talks AboutAfter emergency angiography and coiling to stop the bleeding, Anshul survived. But survival came with challenges that went far beyond the left-sided paresis that left him unable to walk or use his dominant hand.
“I lost my manhood at that time,” Anshul shares, his voice steady but vulnerable. “I’m sharing this for the first time.”
Erectile Dysfunction After Stroke: The Silent StruggleFor approximately one month after his stroke, Anshul experienced complete erectile dysfunction. As a 27-year-old single man, the psychological impact was crushing.
“I used to think, what will happen in the future? Nobody will marry me. Nobody will accept me,” he recalls. “I was thinking I was not a man now.”
The shame was so profound that he couldn’t share this with his family or doctors. In Indian culture, discussing sexual dysfunction carries immense stigma; people judge, people assume you’re “less of a man.”
But what Anshul eventually discovered through his own online research was that erectile dysfunction after stroke is a common neurological symptom, not a permanent condition. As his brain healed and his testosterone levels recovered, his erectile function gradually returned over the course of several weeks.
“I want people to know about this. This is not a shame thing. If something like this can happen, people need to accept it. This is happening to them too.” — Anshul Bhadwaj
Bowel Control After Stroke: The Reality of Lost DignityPerhaps even more challenging than the erectile dysfunction was the complete loss of bowel and bladder control. For the entire time Anshul was hospitalized for 35 days, he was unable to control when or where he would urinate or defecate.
“I used to pee in the hospital bed only,” he explains. “I was wearing diapers. I would vomit everywhere. I couldn’t control anything.”
What made this experience even more traumatic was the response from some of the hospital nursing staff. Rather than showing compassion for a neurological symptom, some nurses expressed frustration and even mocked him.
“They used to ask me, ‘Why don’t you tell us to take you to the washroom? Why are you doing this in the bed? You’re wasting our time,'” Anshul recalls. “I used to tell them, ‘I can’t control it. I don’t know why I’m doing this. I want to control it, but I can’t.'”
This lack of understanding, even among medical professionals, highlights how little awareness exists around the full spectrum of stroke symptoms, particularly those that affect intimate bodily functions.
The good news: Like his erectile function, Anshul’s bowel and bladder control gradually improved after returning home and beginning physiotherapy. Within a month of leaving the hospital, he no longer needed diapers and could independently use the bathroom.
The Psychological Recovery: From Hiding to HealingThe physical challenges were only part of Anshul’s journey. The psychological impact of losing these fundamental aspects of bodily autonomy sent him into a dark period of shame and fear.
When he first started attending physiotherapy sessions, he would wear a traditional Sikh head covering and a face mask, not for COVID protection, but to hide his identity.
“I was scared people at my neighborhood would recognize me,” he explains. “They would see how I was walking and start laughing at me. I didn’t want to face people.”
The breakthrough came when Anshul began working with a mental health therapist who helped him confront his fears directly.
“She told me, ‘These are your fears. This is not reality. Stop wearing this mask. Don’t come again wearing this mask in front of me,'” Anshul remembers.
That single month of therapy was transformative. It helped him reclaim his dignity and realize that his worth as a person and as a man wasn’t defined by his temporary physical limitations.
What Healthcare Providers Need to KnowAnshul’s story reveals critical gaps in stroke care, particularly around:
- Patient education: Survivors need to be told that erectile dysfunction, incontinence, and other intimate symptoms are common neurological effects, not personal failures
- Nursing sensitivity: Medical staff require better training on the neurological basis of bowel/bladder dysfunction after brain injury
- Mental health integration: Psychological support should be standard protocol, not an afterthought
- Cultural competency: In cultures where discussing sexual health is taboo, providers must create safe spaces for these conversations
The Path Forward: Recovery and AdvocacyToday, six months post-stroke, Anshul continues to work on his left-hand motor skills and is waiting for medical clearance to return to the gym. His blood pressure, while improved, still requires monitoring.
But something more powerful has emerged from his trauma: a mission.
“I want to spread stroke awareness in my country to every household,” Anshul declares. “I want to have a stroke awareness series on my news channel. In India, awareness is very low. People don’t even know what stroke is.”
His willingness to discuss erectile dysfunction and bowel control openly, topics that carry immense shame in his culture, is already breaking down barriers and helping other survivors realize they’re not alone.
For Newly Diagnosed Stroke SurvivorsAnshul’s message to anyone facing similar challenges is clear and hopeful:
“Don’t lose hope. Everything will get back. If you’re not able to walk right now, you will walk. I’m walking. I’m talking properly. Everything will get better with time. Don’t fear anything. Nothing is permanent in this world.”
He’s right. Just as seasons change, so too do the challenges of stroke recovery. What feels impossible today, whether it’s walking, regaining sexual function, or controlling your bowels, can improve dramatically with time, proper treatment, and compassionate support.
If you’re experiencing erectile dysfunction after stroke, bowel control issues, or any other symptom that leaves you feeling ashamed: you are not alone, you are not less than, and there is hope.
Take the Next Step in Your Recovery Read Bill’s Book: Learn how stroke can become an unexpected catalyst for growth → recoveryafterstroke.com/book
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This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
Anshul Bhadwaj: Breaking the Silence on Sexual Health and Dignity After StrokeAt 27, Anshul lost more than movement after his stroke. His brave truth about erectile dysfunction & dignity is changing stroke conversations.
Anshul’s Instagram
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Highlights:
00:00 Introduction and Acknowledgments
01:44 Anshul’s Life Before the Stroke
04:24 The Day of the Stroke
08:31 Seeking Medical Help
18:47 Recovery and Rehabilitation
23:10 Impact on Personal Life and Relationships
29:40 Erectile Dysfunction and Bowel Control Issues
36:32 Positive Changes and Future Goals
40:52 Anshul Bhardwaj: From Fitness Icon to Fighting Spirit
48:57 Spreading Stroke Awareness Across India
Transcript:
Introduction and Acknowledgments
Bill Gasiamis 0:00
Hi everyone, and welcome back. And before we dive into today’s powerful conversation, I want to take a moment to thank some incredible people who make this podcast possible a heart valve. Thank you to everyone who’s been leaving comments on YouTube, your stories, questions and encouragement. Mean the world to me and to other survivors who read them to those leaving reviews on Spotify and Apple podcasts, thank you for helping more people discover these conversations.
Bill Gasiamis 0:27
And to everyone who’s purchased my book The Unexpected Way That A Stroke Became The Best Thing That Happened. Thank you for trusting me to be a part of your recovery journey. And finally, thank you to those of you who watch the ads instead of skipping them. It might seem small, but it genuinely helps keep this podcast going. This episode is brought to you by Banksia Tech, proud distributors of the Hanson Rehab glove by Syrebo, designed to help stroke survivors improve hand function at home, whether you’re early in recovery or years into your journey.
Bill Gasiamis 0:59
Now, today’s conversation is unlike any we’ve had before. I’m joined by Anshul Bhardwaj, a 27-year-old journalist from India who survived a hemorrhagic stroke earlier this year. What makes this episode so powerful is Angel’s courage to discuss something most stroke survivors won’t talk about, the loss of erectile function, bowel and bladder control and the profound shame that came with it.
Bill Gasiamis 1:24
This conversation is raw. It’s vulnerable, and it’s incredibly important, if you or someone you love is struggling with these hidden challenges of stroke recovery, please know you’re not alone. Let’s get into it. Anshul Bhardwaj, welcome to the podcast.
Anshul Bhardwaj 1:39
Thank you, sir. I’m big fan of yours. It’s a big pleasure of mine to come into your podcast.
Anshul’s Life Before the StrokeBill Gasiamis 1:44
Tell me a bit about what life was like for you before your stroke.
Anshul Bhardwaj 1:49
Actually, live for my struggle, very hectic. I’m a journalist from India, so I used to work with a new news channel, so it was more of a hectic schedule, going to the office, coming back to home, stressful lifestyle. I’m telling you this again, life of a journalist India is very stressful. It’s very stressful. It looked good from outside, but not good from inside. Life. Journalists in India is very stressful. Job, very hectic.
Bill Gasiamis 2:17
Is that because you have to meet deadlines and you’re working a lot of hours.
Anshul Bhardwaj 2:23
Yeah, we have to meet the requirement required, require, requirements of the news channel, of the chairman of the news channel. We have to meet the requirements of the news channel chairman.
Bill Gasiamis 2:33
And what was your specific task at the news channel? What did you collect news information for? What was the purpose?
Anshul Bhardwaj 2:41
So, actually, Sir, I used to work on political weight. So, you know, I told you before, also, I used to write News Channel, News Headlines, news updates, which you see on live TV.
Bill Gasiamis 2:54
At the bottom of the screen. You see information coming at the bottom of the screen. Okay, so you used to collect that information?
Anshul Bhardwaj 3:02
No, we don’t use to collect the information. The information used to come to us. We have to write in an hour of on forms, model letter, 60 characters, 60 to 70 characters. Yeah, there’s a limitation.
Bill Gasiamis 3:16
I see. And How long had you been doing that job for you?
Anshul Bhardwaj 3:20
So, I started in November 16, 222, I was working there for around right now, if, if we calculate it, it’s been three years. I have completed my three years with the company. So before my stroke, I completed around the two high two years with the company.
Bill Gasiamis 3:37
Do you have to go to university to get qualifications to become a journalist.
Anshul Bhardwaj 3:42
Yes, sir, I have, I have done my poor graduation mass communication.
Bill Gasiamis 3:46
And tell me about the day of the stroke. How long ago was that? And how old were you?
Anshul Bhardwaj 3:52
So, I had my stroke in Feb. 27, 2025 this year only. I’m 27 years old, quite young for this job. So, so it was, it was normally hectic schedule for me. Schedule day for me. I was not happy with the work. While, you know, I told you, my manager used to very pressurize me for the work. So it’s a hectic job. Life of a journalist in India, very hectic, very stressful job. So, I was in the office.
The Day of the Stroke
Anshul Bhardwaj 4:24
I was not happy with I was talking too much. I remember at pm in the evening, so I were telling her that I will skip the gym today. I will not go to the gym. I don’t want to go to the gym today. I go back home, come back home. So, while coming back from the office to the home while driving, I made up a man, let’s not skip the gym. Today I go to the gym. So that time, I decided I go to the gym at 8pm only.
Bill Gasiamis 4:48
And then you were at the gym doing some routine exercise, and then you had a stroke.
Anshul Bhardwaj 4:54
Yeah, I had a shock during the gym only.
Bill Gasiamis 4:56
What did you notice? What happened to your body?
Anshul Bhardwaj 5:00
So I had, I sense a sensation behind this area of my brain. So everything, I experienced dizziness.
Bill Gasiamis 5:10
And did that make you feel like you were falling over? Did you feel unwell other than the dizziness?
Anshul Bhardwaj 5:16
Yeah, I was not feeling well. Everything was moving in front of me, the walls and all. I thought that I was having a heart attack, because, at that time, due to low awareness of stroke in India, so I didn’t know what stroke was before my stroke. No, not. No one in the gym even knew. So I just fell. I fell in the ground. So I actually knew I’m going to get something I would think of a heart attack or cardio.
Bill Gasiamis 5:43
Did somebody call for help? Was there an ambulance that arrived? How did you get help?
Anshul Bhardwaj 5:47
So, when I walk, when I got conscious, so I saw myself lying on the floor. So everybody was scared looking at me. You know, it’s a very scary moment. Everyone surrounding me, while looking in very me, looking to me on a in a very different way. What has happened to him? Why is fall off? So I vomited in that area, only people. Your people were very good at the time. They were helping me to they knew something bad had happened to me, so they were helping me. Let us drop to your hot, to your home. So they were asking me. They were gave me water to drink.
Bill Gasiamis 6:22
And then did they take you home? Or what happened? Did you go to hospital?
Anshul Bhardwaj 6:25
Yeah, there was one guy who who took me to the home. He told me that you’re, you are not well, because my face were drooping from left side. So he knew I was getting seizure also. So he knew something is wrong with him. Actually, anybody who does not know about shock will get to know something is going wrong with some this guy, Caesar, is something very different thing.
Anshul Bhardwaj 6:47
So, he told me, I will drop you to the home. Let’s go home. I’ll drop you. No, don’t worry. I’ll have I must thank him. He got me to the home. So when I came back home, so, I was thinking. I was just thinking what had happened to me, because I didn’t know that time was, stroke was.
Bill Gasiamis 7:06
And then was there somebody home with you? Did you have family at home, or were you home alone?
Anshul Bhardwaj 7:11
Yes. So I used to live with my father. When I came back home, he was not at home. So I just called my sister. I have my elder sister, so I called her, something is going wrong with me. I’m having a very acute headache, a thundercrack headache, so I’m not able to control it. So I don’t know what to do. I just need a sleeve for 1520, minutes. You just came back, come back to home. Just see me.
Anshul Bhardwaj 7:36
And nothing is wrong and nothing is right with me right now. I can die soon, I told her. So I was very scared. Actually, I didn’t know what was happening to me. I thought I was getting a heart attack. So I told her, something is going going wrong with me. I soon may get a heart attack.
Bill Gasiamis 7:52
But the headache, you had a very big headache, very it was a thunderclap headache, yeah. And then at some point they realized that it was more serious than a headache, and you went to hospital. How did you get to the hospital?
Anshul Bhardwaj 8:06
So, when I came back home, when I called my sister, she called my father, something is wrong with your son, just go back and see and he just came rushing to the home. And then he saw me. He I was vomiting all over the place, all over the place. At my home, I was in my bed. I was just vomiting everywhere, wherever I’m getting a space, I’m vomiting there.
Seeking Medical HelpAnshul Bhardwaj 8:31
So, he didn’t knew about the stroke. My father also didn’t knew about stroke. He just went back. He can he he went to the chemist. He told my son is vomiting everywhere after working out. So the camera thought, it was due to low blood pressure. He gave electrolyte to my father.
Bill Gasiamis 8:49
So is the chemist, the first place where you might have gone to get some support for some help.
Anshul Bhardwaj 8:56
My father went there and he gave electrolyte drink to my father actually came. Didn’t knew, my father want elder bill to explain this to my chemist, what are happening to me? He just say, my father, my son, is unconscious. He’s vomiting everywhere. So my chemist thought that he might be suffering for low blood pressure. Actually came. Didn’t you know? He didn’t saw me. So, he gave electrolyte to my father. He He told him that give him, he will be better.
Bill Gasiamis 9:26
And then you weren’t better.
Anshul Bhardwaj 9:28
No, even after doing the electrolyte, I was just vomiting everywhere. Just after half an hour, my sister arrived, so rushing, and one thing I want to thank my sister for this one, she noticed, she noticed that I was having a Caesar. Nothing is something is wrong with him going on right now.
Bill Gasiamis 9:48
And then at some stage, who made the decision to get you to a hospital? Did you go to a hospital?
Anshul Bhardwaj 9:54
So, it was around pm, at night time. So it. 8pm I had a stroke, so I went to the hospital at 12pm because I came to know something going wrong with me. You must experience yourself only why I’m doing this, why I’m omitting my body is not in mind control. You know you’re getting seizures. You are doing different type of things. You are your hand are moving yourself so you’re not able to control it.
Anshul Bhardwaj 10:23
So my sister told me, You’re you are not looking good. Let’s go to the doctor. So I was new from inside, something is going wrong with me that I decided, no, let’s go to the doctor. So I told you before, also, I was thinking of heart attack. So I thought, I will get the heart attack the CT scan. Then they took me to hold a CT scan.
Bill Gasiamis 10:42
The CT scan revealed that there was a bleed on your brain.
Anshul Bhardwaj 10:47
So, when they were two doctors who were treating me at that time. I was unconscious during the CT scan. I don’t know how I got consciousness, so I just they took my CT scan. That took my report. They saw my report. There was one junior doctor who was who got frightened looking at my report. He said, sir. He told his senior that, sir, he is going to die soon. He is getting so much bleeding, his nerve is ruptured. He will die soon. I told you also I was aware that time.
Anshul Bhardwaj 11:19
I hope I just heard him saying this, he’s going to die soon. I was so frightened that time, I was like, I’m going to die soon. I was just praying to God. God, give me just one more chance to live. Wow, that’s be confronting. Yeah, I was just praying to God. Just give me one more chance to leave. I will live my life to the fuller this time, give me one more chance. I don’t want to die today.
Bill Gasiamis 11:44
We’ll get back to more of Angel’s remarkable story in just a moment, including how he navigated the loss of bowel control and erectile function and the insensitive treatment he faced from hospital staff. But first, I want to tell you about Banksia tech, the proud distributor of the Hanson rehab glove by cerebo. This isn’t just another rehab device. It’s specially designed to help stroke survivors regain hand function through mirror therapy and assisted movement.
Bill Gasiamis 12:12
Whether you’re struggling with grip strength, finger mobility or hand coordination like angels is with his left hand, the glove works with you at your own pace in the comfort of your own home. You can learn more at their website. I’ll include the link in the show notes. Now back to Angel’s story, because what happens next reveals just how little Stroke Awareness exists, even among medical professionals. Yeah, fair enough. And then what happened? Did you go into surgery? How did they resolve the brain hemorrhage?
Anshul Bhardwaj 12:47
So, they told me, We don’t have this. The hospital we have came to is not a neuro special hospital. You need to go to a special hospital. So they referred my family. They told my family you had, your son had only 50% chances of survival. You just rush him to the big hospital as soon as possible.
Bill Gasiamis 13:09
So was your family’s responsibility to get you there.
Anshul Bhardwaj 13:13
So, yeah, they went. They took me from to them, from the ambulance to a neuro special Hospital in Delhi, only by car, near by ambulance.
Bill Gasiamis 13:22
Okay, so the ambulance took you, it was, yeah, yeah, under medical supervision, yeah, yeah. And then, how did they treat your brain hemorrhage? Did they? Did you need brain surgery? How did it work?
Anshul Bhardwaj 13:36
When I went to the neuroscience Hospital in Delhi, sir hospital, so they give two choices to my family. One is to they said me, they told my family, I do to go for open brain surgery. And second is safe surgery and geography. So they told my family, if you go for open brain surgery, the one thing that will happen will he can go to coma. His condition is very critical. He may go to coma and he can die also. The better option is to go for angiography, coiling, coiling. I had my coil I have my coiling beside this area.
Bill Gasiamis 14:14
So you had an angio gram, and then they used that method to put a coil in and coiling blood vessel from bleeding.
Anshul Bhardwaj 14:23
Yeah.
Bill Gasiamis 14:24
Wow. So how long did you spend in hospital?
Anshul Bhardwaj 14:28
Around 35 days.
Bill Gasiamis 14:31
Were you able to feel better as soon as the procedure was done? Or did you have some deficits that you had to deal with?
Anshul Bhardwaj 14:39
So, yeah, actually, I suffer from left-sided paresis. My left side got affected.
Bill Gasiamis 14:44
Left side paresis. What is that?
Anshul Bhardwaj 14:46
Paresis, P A R E S I S.
Bill Gasiamis 14:49
Yeah. What does that mean? What does it how do you feel? What does that do to you?
Anshul Bhardwaj 14:54
I was not able to walk. I was not able to move my left part of the body, left leg. I was not able. Were to walk, I was not able to drink the cup of coffee, tea like this. I’m still suffering from it. I’m not able to write from my left hand. I’m a left handy.
Bill Gasiamis 15:10
So you’ve been impacted on your left side. And yeah, is that better now?
Anshul Bhardwaj 15:15
Right now, walking is better, much better. I went to a physiotherapy, so work is much better right now. I can walk, but still writing is bit tough.
Bill Gasiamis 15:26
What about using a computer? Typing on a computer does that okay?
Anshul Bhardwaj 15:30
The speed is not okay. The speed is not good. I used to do it for my right hand, , right now, talking to you, I log in for my right hand only. Left hand, the gripping motor skills are not good.
Bill Gasiamis 15:44
So what’s the medical support like for somebody who’s having a stroke in India? Do you get all the support that you need when you’re in the hospital and then in rehabilitation?
Anshul Bhardwaj 15:54
So yeah, the hospital, I’m really thankful to them. They are the one who saved my life, so they were always checking on me. All the doctor always checking on me. So it was like, I, had physiotherapy in the hospital. Also the hospital was the reason of my stroke were hypertension.
Bill Gasiamis 16:12
So you had undiagnosed hypertension. Yeah, wow. And you’re, you’re 28 years old. You have hypertension? 2727 Yeah, yeah. And did you have any idea that you had hypertension?
Anshul Bhardwaj 16:29
Yes, I had. So, in 2000 20s, yes, in 2023 I had a nose bleeding in former this area while working in the office only so due to pressure and all. So, I went to the medical room of my office. So they checked my blood pressure very high. One more than 180 $6 more than one eight. That is very high.
Bill Gasiamis 16:55
Why do you think you had such high blood pressure? Was it due to the work, or is it just some kind of a genetic thing that you have?
Anshul Bhardwaj 17:03
I think, due to the work because the work pressure is much more in the media industry, news industry.
Bill Gasiamis 17:09
So when you discovered that you had high blood pressure, did they put you on blood pressure medication or or not?
Anshul Bhardwaj 17:17
So yes, I was on medication. I want to share one, one of the biggest thing with you, when the this thing happened with me when I was 2023 I’m talking about 2023 when I had my nose bleeding, so I was admitted in the ICU due to hypertension. So, I took a leave from the office, so I told my manager that I won’t be able to come today, and he told me, why don’t you work from the hospital only? Like a work from home.
Anshul Bhardwaj 17:50
You are very strong guy. He told me. He told me, tell your father to take the laptop to the hospital and you start working. We have very less people in the team can’t We can’t afford you taking a leave.
Bill Gasiamis 18:07
Wow, even if you’re very sick and you’re in hospital, he expected you to work. And did you do that? Did you work from hospital?
Anshul Bhardwaj 18:14
No. I just called it him, and it’s not possible. I reported to my all these things.
Bill Gasiamis 18:21
That’s a good move. Wow. Okay, so I understand now what you say about the pressure at work was very high, very high. Yeah, understand. So when you experience the stroke and you realized you’re in hospital and need to coil your brain, what is it like to be so young and to experience a life-threatening situation like that. How did it make you feel about what was happening?
Erectile Dysfunction After Stroke Recovery and Rehabilitation
Anshul Bhardwaj 18:47
It was very bad phase of my life, one of the worst phase you are young, just few days where you can drive motorcycle, you can drive car, but after few days your left side is not working. It’s a very big thing for a young guy, he’s seeing himself, he’s not able to feed himself, he’s not able to go to the washroom by himself. So it’s a very live, I think it affected me a lot. Just after a few days only, my manager removed me from all the WhatsApp groups.
Bill Gasiamis 19:21
So what about mental mental health? Like, did you start to notice that you were a little bit unwell, as far as your mental health was concerned? Were you worried? Were you concerned about what life is going to look like? What all yeah means for you?
Anshul Bhardwaj 19:37
Actually, I was very concerned. I was like, I don’t know how, like, I used to ask everyone in the hospital my doctors, when will life become normal for me? They told me, took some take some time. Everything will get your hand will start moving. You will start moving again. Everything will get normal. Nothing is permanent in this world. The doctor used to tell me, God is kind on you. It go alive, embrace their life.
Bill Gasiamis 20:02
Was that comforting to hear that? Did it help?
Anshul Bhardwaj 20:06
Yeah, this helped. This boosted me a lot.
Bill Gasiamis 20:08
Some positive feedback from your doctor, yeah. And did you accept what happened to you? Is it something that you understood that this is how things are now, and I have to tackle it. I have to move forward. Have to find a way through this.
Anshul Bhardwaj 20:26
Yeah, acceptance were not very good for me. I will never accept that I had a stroke. So I was not able to accept this reality that my left side is not working anymore. So I was like fear, fear of facing people. I was suffering from fear of facing people, so I was thinking that when things will get sad again, normal.
Bill Gasiamis 20:48
Yeah, fear of facing people, because they might judge you. Why?
Anshul Bhardwaj 20:53
The awareness of shock in India is very less so people judge you. You’re walking in a very different way, like this, like this, you’re not able to work properly, so they used to make fun of you like this. Fun of you why he’s working funny off your walk, walk style.
Bill Gasiamis 21:12
Wondering why that’s happened to you. They don’t understand about stroke.
Anshul Bhardwaj 21:16
Why he’s moving like this, holding his father’s hand to why this young guy who was so fit before, why he’s saying his father’s support to move to work, why he’s so dependent on his father now.
Bill Gasiamis 21:30
Do you think they’re asking out of curiosity more, or is it that they’re being silly about?
Anshul Bhardwaj 21:37
Actually curiosity because they’d want to know? Awareness is very low in my country, so they don’t know what stroke that’s why they are more more into like, why is this happening with him? When I went to the physiotherapy center, people used to ask me, What happened to you, what happened to you, son, what happened to you? My son, stroke used to happen with older people. So there were people of 80 years old. They used to ask me, What happened to you? Do you used to think a lot.
Anshul Bhardwaj 22:09
So I used to say, no, no, life. I used to explain my story to them the way I’m talking to you. So I used to say them, no, I had a strong due to hypertension. So they used to see, yeah, chill your life. Take your chill your life. Why you take so much pressure? I say, No, I don’t take pressure. I want to recover. I want to go back to my old life.
Bill Gasiamis 22:30
But you want to recover. You want to go back to your old life, but not your work. What about your work? Do you want to go back to your work?
Anshul Bhardwaj 22:38
So, just recently August, my doctor told me, You should go back to the work, start work from home. You can’t you can’t travel. My office is around 40 kilometers away from my home. So he told me, driving is very tough for you. You will get stressed out very easily. Go try for work from home. Then email my company, my manager about this. I want to work for home. They denied my request.
Bill Gasiamis 23:06
So you won’t be going back to the journalist job.
Impact on Personal Life and RelationshipsAnshul Bhardwaj 23:10
I want to go back to the job, but they are denying my request to work for Home. I don’t know when I will be fully fit to go back to the work. I see, I’m waiting for that moment.
Bill Gasiamis 23:22
I see so it’s very early days, though, your stroke wasn’t that long ago. It was still only a few months ago. And strokes takes some time to heal, yeah, yeah, and take some time to heal and recover.
Anshul Bhardwaj 23:35
Yeah. I just want to share one thing with you. I just had a Zoom meeting with one of the senior and most member of my organization. They don’t know my stroke. So he the way we are talking. He was talking to me. He say, Hey, you look very fine. Why you are saying you can’t come to the office? Just they are judging with whom I look say they You are looking very fine. You are looking very nice. You are looking very nice. You are so happy, looking very happy. Why don’t you come to the office?
Anshul Bhardwaj 24:03
Because awareness very low. They’re not able to understand what shock is. Mentally taking so much. We can’t travel 40 kilometers, a big thing. You can you can see 80 kilometers a day. It’s a very tough job for a shock survivor.
Bill Gasiamis 24:17
That’s huge, especially if your left side is not working properly.
Anshul Bhardwaj 24:22
So I told him that. I told my senior that I’m not normal like you. I’m a stroke survivor, I’m not a normal person. You can’t compare my journey to yours.
Bill Gasiamis 24:36
And just because you look a certain way doesn’t mean yeah, that everything is fine.
Anshul Bhardwaj 24:41
Yeah, this is the main aspect, just I’m talking right now. I’m looking good, so I’m looking normal. I didn’t mean I’m normal from inside too.
Bill Gasiamis 24:50
And if he saw you in person, he would notice your deficits. Your left side isn’t, yeah, operating correctly, yeah. But he saw you from zoom. And from zoom, everything looks fine.
Anshul Bhardwaj 25:02
Yeah, they look me. From zoom, they just assume that you are fine. So there’s You look fine. You look fine. Why don’t Why can’t you come to the office?
Bill Gasiamis 25:13
I understand. So when you go home after hospital and you’re at home. Are you being cared for at home by your family? How do you get support when you’re at home after hospital?
Anshul Bhardwaj 25:28
So when I came back to the home, mom to the from the hospital, I were getting a good care for my father. My father used to treat me, my meals, everything.
Bill Gasiamis 25:39
And is your father somebody who works, or is he not working at the moment.
Anshul Bhardwaj 25:43
Actually, he’s a retired person, government official.
Bill Gasiamis 25:46
Okay, so he has time to be able to support you.
Anshul Bhardwaj 25:50
Right now I’m leaving his horn. He’s paid all only.
Bill Gasiamis 25:52
So he still has some kind of payments.
Anshul Bhardwaj 25:56
He’s paying. He’s paying all my bills, for all my medicines bills and all because I’m not getting pay for my organization. So they are. He’s the only one who’s paying me all my bills.
Bill Gasiamis 26:08
And is it expensive to be a stroke survivor in India?
Anshul Bhardwaj 26:12
Yeah, very expensive. The cost of medicines is very high, maybe around $100 a month.
Bill Gasiamis 26:19
So you’re at home. You’re being looked after. Your dad is helping you out. So that’s really positive. That’s great support. Who else is helping you get through this? How else are you managing to find a way through to overcome all the challenges that this is creating?
Anshul Bhardwaj 26:35
I’m just waiting to get back my talk to my doctor. Recently, I had my appointment with my doctor. He told me, wait. Things will take time. Just wait to get back to your old fellow again. Wait two, three months more. It’s been only six months. You are expecting more from six months. Wait for one year. Next year you will complete one year. Then let’s see what we have.
Bill Gasiamis 26:57
I see and are you going back to the gym? Have you been able to go back to the gym and rehabilitate or do anything like that?
Anshul Bhardwaj 27:05
No, I can’t work out because left side is not working. So doctor has told me, No, don’t go to the gym again. We only go to the gym when I will give you, give you a clean sheet.
Bill Gasiamis 27:15
When they give you. What was that?
Anshul Bhardwaj 27:17
When he will give me the clean sheet.
Bill Gasiamis 27:21
Okay, so nobody has authorized anything like that for you yet.
Anshul Bhardwaj 27:25
No, he will do the MRI of my brain. Then I only will decide.
Bill Gasiamis 27:31
I see, make sure everything has settled down and the bleeding is not happening and the coil is in a good position, etc. Yeah, yeah. Has the hypertension settled down, or is it still high blood still there?
Anshul Bhardwaj 27:45
When I went recently, my sister Ollie, was 156 even after medication.
Bill Gasiamis 27:51
Even after, I understand. Was there a turning point when you said, I’m really going to fight for my recovery? Did you find yourself in that situation where you decided that you’re going to make sure that you get better.
Anshul Bhardwaj 28:06
When I understood that in India, nobody understand your pain, I made a decision. I will raise my voice through social media. I will do anything to raise shock awareness in India. I need just government support, support of the government. And government, I can do much big things.
Bill Gasiamis 28:25
Yeah, the government. Do they support Stroke Awareness programs?
Anshul Bhardwaj 28:31
I don’t know. I don’t know. In India, we have any Stroke Awareness Program also, I don’t think we have.
Bill Gasiamis 28:39
See in Australia, we have the Stroke Foundation helps to raise awareness about stroke. There isn’t a foundation like that in India.
Anshul Bhardwaj 28:48
No.
Bill Gasiamis 28:48
Okay. So do you know anyone else who had a stroke?
Anshul Bhardwaj 28:55
Have you met other people? Yeah, when you used to go to physiotherapy, I met many people there. I connected with them. We made a WhatsApp group of art stroke survivors.
Bill Gasiamis 29:06
So together, you guys are creating something new.
Anshul Bhardwaj 29:09
We used to talk each other pain. We used to talk about each other pain only we can understand then you Yeah, older people than me, some are in 50s, and some are in six.
Bill Gasiamis 29:22
So in your rehabilitation, you’re the youngest person there in that rehabilitation hospital. Yeah, yeah, I understand. So what did early recovery look like for you? How hard was it for you? Are you back on very high are you able to be independent and go to the bathroom on your own?
Erectile Dysfunction After Stroke and Bowel Control IssuesAnshul Bhardwaj 29:40
So, in the early stage of my life, for one of the threatening moment for me, I lost my manhood. At that time.
Bill Gasiamis 29:47
You felt like you were less of a man.
Anshul Bhardwaj 29:50
Yeah, because I lost my erections, I’m saying this for the first time, yeah, I was in India. It’s like, it’s very tough to share these things with a. Other people. People judge you on this basis. So I was not able to share with my family. I didn’t share with anyone. I’m sharing this with you for the first time. So I was not having any movement. In Boyle, we have a election in the morning. I lost all my election for around one month.
Bill Gasiamis 30:19
Are you think, and is that something that you were able to receive some support with from your doctors or anybody like that?
Anshul Bhardwaj 30:26
No, I was not able to share it with my anyone, because people judge you. People say you’re less of a man. You’re not man. They judge you on this basis. You can’t share this with anyone.
Bill Gasiamis 30:40
It’s very difficult, I know, as a man, to be able to admit that it’s difficult, and also to have a conversation with other people. Yeah, the reality is, is that it is something sexuality, and the way I feel after stroke in in that way does change. It’s, you know, for some women, it’s completely different. For some men, it’s completely different. Yeah, and you felt that you were going to be judged by other people that had that conversation, so you haven’t shared that with them, but you, you thought it’s a good idea to share it on the podcast that goes all around the world.
Anshul Bhardwaj 31:16
Yeah, I want people to know about this. I don’t, I want to spread awareness, to know people accept this. If something can happen, to accept this thing, this is not a shame thing. People will get, I think, through this, people will get to know, yeah, this is happening with them, okay, something like this. Who those who don’t know about shock, they will get to they will get to know about this thing. Shock is a tough thing. It’s not an easy thing.
Bill Gasiamis 31:42
Yeah, it’s an it’s part of the injury. What you’re experiencing, you can’t get an erection. That’s part of your injury that happened inside your brain. It’s got nothing to do with you or anything else. It’s it’s not something that you created. It’s just something that’s happened as a result of the brain bleeding.
Anshul Bhardwaj 31:59
So, I used to search on net also, so I just didn’t I got many people stories and read it, people talking about they had some erection issue also.
Bill Gasiamis 32:11
After stroke, or just?
Anshul Bhardwaj 32:15
After stroke. So then I was able to connect. Is rare, because at that time, I was very shattered, because I’m not married, I’m single. Right now, I was thinking, when, what will happen the future? Nobody will marry, nobody will accept me.
Bill Gasiamis 32:29
Okay, so now you’re thinking that as well.
Anshul Bhardwaj 32:33
I was in a bit of mental pressure after this, knowing this, because when I was in hospital, I used to feel very bad. I used to feel what has happened to me, I’m not a man. Now, what will happen to me in the future? Who will marry me? Nobody will going to marry me. Nobody will accept this type of man.
Bill Gasiamis 32:50
Yeah. Do you feel better about that now, now that you’ve had the opportunity to discover that other people have been through this, do you know that there’s a path forward that you can also rehabilitate that part of your life.
Anshul Bhardwaj 33:05
Yes, I can say that this improve with time. The problem which I was suffering from, improves and improved in one month. Started improving I was thinking I was looking at improvement in just one month only. And the hospital, there was no movement, no erection control. I used to feel very bad. I lost my urinal and bowel controls.
Bill Gasiamis 33:27
As well, so you also weren’t able to hold on to your bells.
Anshul Bhardwaj 33:31
Yeah, I was used to doing the hospital bed only, okay, so I used to be on the hospital experience and to go through that. Yeah, even the nurses used to make fun of me at that time. They were not able. I don’t know why they were not able to understand it. I used to tell me, I’m not able to hold my pee. I used to pee on the hospital bed only. They used to fund me. Why you pee so much? You can’t control your pee?
Anshul Bhardwaj 33:58
They were not able to get me. I don’t know there was a communication issue. They didn’t know about this, so you should tell her that I’m not able to control. I don’t know why I’m doing this. I want to control. I’m not able to control. I can’t do anything.
Bill Gasiamis 34:11
The nurses are not trained to understand what happens with people who have a stroke.
Anshul Bhardwaj 34:16
I don’t know about this, but this is the reality that happened with.
Bill Gasiamis 34:20
Okay, so they’re making life even harder. It’s hard already. Yeah, hospital, you’re recovering from a stroke, you have all these challenges, and then these people do not understand that you are not being a terrible patient. You are just this is one of the symptoms of what happened to you.
Anshul Bhardwaj 34:37
Yeah, actually, when the nursery used to change my diaper around three to four times a day because they used to get frustrated about this. They used to tell me, why are you? Why don’t you tell us to get yourself to the washroom, get someone to take you to the washroom, to pee.
Anshul Bhardwaj 34:58
So why don’t you pee? In the bottle instead of doing hair in the bed you’re doing in. This is taking so much they used to waste our time on the bed, so we used to change your diet, but feel weird to us. So I used to also feel shy because I’m male, they are female, they are we are I’m not able to connect with them. So I used to feel very shy.
Bill Gasiamis 35:21
Yeah, that’s a very difficult situation. And did that continue while you were in hospital the whole time? Did that improve with time?
Anshul Bhardwaj 35:29
But in the hospital, there were no improvement. I got improvement only at home after one month.
Bill Gasiamis 35:36
After one month. So is that because you can hold on to your bowels now and have more time to get to the hospital to the toilet.
Anshul Bhardwaj 35:45
So, I just want to tell you one thing. When I came back to the home, I started my physiotherapy. I think after my body started becoming little bit my this part of my body also started recovering, getting strength, my testosterone level started improving at hospital. It was very low due to that reason, I was not getting any erections at that time.
Bill Gasiamis 36:09
Yeah, and the bathroom situation, how did that change when you were at home? Were you able to hold on to your bells before going to the bathroom at home? Or did you have to wear a diaper at home as well.
Anshul Bhardwaj 36:22
I used to wear diaper at home also.
Bill Gasiamis 36:25
And that has improved. Now it’s not like that.
Anshul Bhardwaj 36:28
Now, no, I don’t wear diapers. Now I can go myself.
Positive Changes and Future Goals
Bill Gasiamis 36:32
So you don’t need any help at the bathroom?
Anshul Bhardwaj 36:35
No, no.
Bill Gasiamis 36:35
Yeah, that’s a positive sign that’s improved. Your testosterone is increasing. Yeah, you’re able to feel a little bit like yourself again. So it’s interesting that there is such a lacking awareness of what stroke can do to a person, especially even in the medical field and the nurses were giving you a hard time. I understand it would be very difficult to clean a diaper of somebody who is an adult when they’re in hospital, but it’s unfortunately, very necessary, and something that needs to happen so you can you can recover.
Bill Gasiamis 37:08
These things need to happen. They need to that’s what the job of a nurse is. Do you feel like the nurses were untrained, or were they just is that a cultural issue? What kind of issue is it? What’s happening there? Why are they so uncomfortable dealing with their patient?
Anshul Bhardwaj 37:24
I can’t say that they were untrained. That was the bad this, that hospital was a I can’t say they were untrained. I don’t know why they knew didn’t understand my thing, my condition. I don’t know why they were very well trained. They know how to throw things. They were frustrated because of me, because I was being in the bed every time. I don’t know why this one had it happened with me.
Anshul Bhardwaj 37:48
It could be this thing that God wants me to come to your fort card and share this thing that that’s why that happened with me. I think so. Yeah, everything is enough.
Bill Gasiamis 38:02
Why not? That’s a good reason. Why, especially if it’s going to help other people by you sharing your story and and making some awareness. Yeah. So what was it that, what was your biggest challenge and test? Do you think so far after the stroke.
Anshul Bhardwaj 38:17
It was accepting myself. I still remember when I went to the physiotherapy I used to wear outside. I used to go outside. I belong to a Punjabi family in India, so we used to keep a Talib at home and patka type of thing. When I used to go outside of Maha I used to cover my mask. I don’t want to face people wear that patka type of thing on my head. Where my Tata you need to seek people, you know, seek, seek people, Sikh people, yes, sikha, yes, sikha, Sikh religion.
Anshul Bhardwaj 38:53
People used to wear something on the turban at the top of their head. I used to do that type of thing so nobody recognizes me and on the because people at my neighborhood know me. They were under they will recognize me. How well this guy is working like this. They will start laughing on me. I was fair speaking, looking at people. I used to get scared a lot, and I used to wear a mask on my face, or nobody recognizes me who is working on the road.
Bill Gasiamis 39:23
And how long did it take you to take that mask off and to go into public? Around one month. What did you decide to do that for? What happened? How did you decide I’m not going to cover my myself and hide.
Anshul Bhardwaj 39:39
I started taking a mental therapy psychologist. I took a therapy from a psychiatrist. I told her everything about me. She told me, these are your fear. This is not a reality. These are your fears. So start working on your fears. Stop wearing this mask. Don’t come again, wearing this mug in front of me.
Bill Gasiamis 39:59
So this particular therapist was very important to help change the way you were thinking about the situation you were in. And did you still see the therapist, the psychotherapist? Or is it a psychologist, or is it a psychiatrist? What? Who did you go and see?
Anshul Bhardwaj 40:15
She’s a mental therapist, psychologist, I guess.
Bill Gasiamis 40:20
Yeah. And do you still see her now?
Anshul Bhardwaj 40:23
Yeah, she is in touch with me. We have each other number. We used to greet her Good morning. I used to get her good morning every day, like this. I’m in touch with her. I used to ask her about her family. What’s going on in your family?
Bill Gasiamis 40:35
Do you see her professionally? Is what I meant, sorry, sir. Do you see her as her patient, or has her client? Do you go back for more therapy sessions?
Anshul Bhardwaj 40:44
No, I just took therapy with her from one for sale, only one month.
Bill Gasiamis 40:49
But there was enough to make you change the way that you were thinking about things.
Anshul Bhardwaj: From Fitness Icon to Fighting SpiritAnshul Bhardwaj 40:52
Yeah, she helped me a lot to gain my mental stability back.
Bill Gasiamis 40:57
Yeah. Did you find that you found yourself at a really dark place. Was there a rock bottom moment when you felt like. why is this happening to me?
Anshul Bhardwaj 41:07
Yes, sir, I was very fit, very good guy. I was a gym trainer before I became a journalist. I used to be very fit. So, we have an Indian actor in India, a very famous Bollywood actor. His name is Salman Khan. He’s a fitness icon of India. Salman Khan. My friend used to call me Salman Khan before, before my stroke. So, when this happened with me, people used to tell me why. He used to think himself. Someone can that. That’s why he this happened with him. They used to curse me like this.
Bill Gasiamis 41:50
Wow. So people used to call you the name of that person. You didn’t change choose that, but then, because you were happy with people calling you, that you enjoyed being called that name. Other people you were that you had an ego. What did they think you had a why? Why was it a problem that you somebody was calling you the other person’s name?
Anshul Bhardwaj 42:17
No, this was not a problem. I used to feel very happy, because he is a very big actor in India. Very big Bollywood actor.
Bill Gasiamis 42:25
Very famous people thought, but the other people thought that you had a stroke because you thought you were more special, more important. Why did they think?
Anshul Bhardwaj 42:35
They used to tell him on the people on the road to gossip about me, used to him think himself as Salman Khan. Look at him. Now, he can’t walk now. He used to him think himself as a fitness icon. Look at him. Now, what has God given to him?
Bill Gasiamis 42:52
They thought it was negative, that you thought yourself more more important or something.
Anshul Bhardwaj 42:59
It was more of a negative dog.
Bill Gasiamis 43:03
You just had somebody called you that name. You thought it was funny, you thought it was good, and that was it. You weren’t you didn’t have a big ego.
Anshul Bhardwaj 43:12
Yeah, before my stroke, I used to feel very happy when people used to compare with me. Salman Khan, I used to feel very happy that people are calling me and like comparing with a Bollywood icon, it’s a very big thing for me.
Bill Gasiamis 43:27
Yeah, and now they don’t compare you to him anymore.
Anshul Bhardwaj 43:30
Nah, they don’t. I’m very thin now. I’m not a big guy. I’m I lost my weight also.
Bill Gasiamis 43:37
Yeah, and your friends, the ones that were people who you used to spend time with before the stroke. Do you still see all your friends?
Anshul Bhardwaj 43:46
Before my show, I don’t have much friends. I have very limited friends. I used to go out with my family only. I’m a family person. Type of person I see. I used to spend time with my sister or my husband, I see Yeah, like this. So very less friends.
Bill Gasiamis 44:07
Yeah, and the people that you used to know at the gym at work, your colleagues? Do you? Do you keep in touch with any of them?
Anshul Bhardwaj 44:13
Yeah, my colleague used to call me. Then, when are you going to go back to the work? Come back to the work. We are waiting for you. Why don’t you come back? So I used to tell them my story. I had a stroke. They don’t know about stroke symptoms, so they used to tell me, it’s just a stroke, just a stroke. Why can’t you come back? Why are you taking it is taking you too long to come back to the office.
Anshul Bhardwaj 44:36
It’s just a stroke, just a shock. Stroke is just like cough and cold. They used to compare like this, wow. And I’m not able to understand and I’m not able to make them understand that stroke is a big life setting disease.
Bill Gasiamis 44:50
Yeah, it’s difficult when somebody hasn’t gone through it and they haven’t met anyone that’s had a stroke. It’s really hard for them to understand they when there’s no. Awareness, then it becomes your job to make them aware of what a stroke is, how serious it is, and how it’s affecting you. And just because you look fine on the outside doesn’t mean that you’re fine on the inside. Yes, that’s a big thing. So yeah. So looking back now, how have you changed, not just physically, but also emotionally and mentally. How have you changed? How are you different than before?
Anshul Bhardwaj 45:25
So, now I have become more of a positive at that time, I used to work with negative people. I was more negative. One more negative thoughts. Now I’m I’m in a hard home. I’m on a recovery, so I’m with spending time with family more. So I’m more on a positive side. So I think that, yes, I’m no mind. I’m now more positive than before. I used to challenge the movements that I got a one more birth, and my opinion, only few people in the world has a chance second chance in life.
Anshul Bhardwaj 45:58
Very few lucky people get second chance so I used to cherish this moment, this moment. I used to thank God every day I used to enjoy the nature. There was a time I was not able to enjoy the nature. I can see I can just hear the birds chirping. I can’t go and see outside. I can hear the children’s up. I can hear the children’s playing outside. I can see, I can hear the rain falling on the ground. I can’t see. I can enjoy the nature.
Anshul Bhardwaj 46:30
In the beginning of my stroke time, I am just laying on this bed only. I’m just just listening to what’s happening outside. I can’t just see, I can’t just feel the nature. I can see the children’s are playing outside, but the birds are charming, chirping outside.
Bill Gasiamis 46:47
Understand, what have you discovered about yourself? What kind of strengths do you see in yourself that you didn’t know that you had before?
Anshul Bhardwaj 46:56
The strain I have is inner, inner power to face all this thing I have survived six months facing all the negative talks, talks from the other people.
Bill Gasiamis 47:07
It seems like you see your stroke as something that has shaped you in a meaningful way. Yeah, yeah, that’s excellent. So if you could share one lesson from your journey with somebody that’s newly diagnosed. Perhaps they’re newly diagnosed in India. What would it be? What would you say to somebody that has been through what you’ve been through?
Anshul Bhardwaj 47:30
I want to tell him that don’t lose hope. Everything will get back. If you’re not able to walk right now, you will walk. I’m working. I’m working with my I’m also able to talk properly. Everything will get better with time. Don’t fear anything. Nothing is permanent in this world, no weather is permanent. If it’s raining today, sun will rise tomorrow. If today’s monsoon will winters will come.
Anshul Bhardwaj 47:57
Nothing is permanent. I found 27 years old today, I will not remain 27 years old. For my lifetime, I will become 18 or also, nothing is permanent. Yeah, just judge the God, God’s plan. Everything happens for a reason.
Bill Gasiamis 48:10
So what does post stroke growth mean to you? Personally, there seems to have been some growth in your life, even though you’re going through these difficult times. What does that mean to you?
Anshul Bhardwaj 48:23
So, I just want to tell you one thing. Before my show, I was not much connected to my father there. I had a very different I am now much more closer to him, because I have spent six months at home so I can, I have much good relation with him. Now, I used to feel I’m more connected with him now as what I was before.
Bill Gasiamis 48:45
Yeah, have you also discovered a new purpose and passion in life? Is this something that you’re working on? Is there something more purposeful about your life these days?
Spreading Stroke Awareness Across IndiaAnshul Bhardwaj 48:57
Yes, I want to aware. I want to aware, make people of my country aware about I want to spread shock awareness in my country to every household. I have a plan, which I wanted to share with my office. I didn’t got the opportunity to work from home, so I’m not connected with them right now. So, what I have a plan is, so I have a plan. I work for the news channel. It get broadcasted to all of the TV channels, so I had a plan to have a stroke series and my news channel, Stroke Awareness series.
Bill Gasiamis 49:31
Yeah, that’d be amazing. Yeah. I hope it works out for you. And sure, I really appreciate you reaching out and joining me on the podcast, I appreciate you sharing your story and being so open and vulnerable, and I wish you well in your recovery, and I look forward to hearing how you continue to spread the message about stroke Stroke Awareness and how you are achieving those new goals in your life. Yes. Thank you for joining me. I really appreciate it.
Anshul Bhardwaj 50:02
Thank you, sir. It’s a big pleasure of mine.
Bill Gasiamis 50:05
What a powerful and courageous conversation, the honesty, vulnerability that angel brought to the discussion is exactly what the stroke community needs real talk about the challenges that most people are too afraid to mention if you’re struggling with erectile dysfunction, bowel control issues, or any other challenge that’s left you feeling ashamed or isolated. Please know that these are neurological symptoms, not personal failures, and as we heard today, they can improve with time and proper support.
Bill Gasiamis 50:35
If this episode resonated with you and you want to explore more about the unexpected way that growth can come from stroke recovery. Check out my book, The Unexpected Way That A Stroke Became The Best Thing That Happened. You can find it at recoveryafterstroke.com/book. Please subscribe to the podcast so you never miss these conversations. Leave a comment on YouTube, sharing your own experience, and if this episode helped you. Share it with someone who needs to hear it. And a final thank you to Banksia tech for supporting this episode.
Bill Gasiamis 51:07
If you’re looking for ways to improve hand function after stroke, check out the Hanson rehab glove by cerebo at Banksia tech.com.au, remember, you’re not alone in this recovery journey. There are people who understand, people who care, and people who are walking the path right alongside you. I’ll see you in the next episode. Take care.
Intro 51:30
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol. Discussed all content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis.
Intro 51:59
The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.
Intro 52:24
Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content, if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be call triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department. Medical information changes constantly.
Intro 52:51
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The post Anshul Bhadwaj: Breaking the Silence on Sexual Health and Dignity After Stroke appeared first on Recovery After Stroke.
Hyperbaric Oxygen Therapy for Stroke Recovery: Bud Beucher’s Remarkable Return to LifeWhen you’ve spent your life working seven days a week, the idea of slowing down feels impossible until a stroke stops you in your tracks.
That’s what happened to Bud Beucher, a resort president from Florida whose drive, optimism, and leadership spirit suddenly met their toughest test yet: an ischemic stroke that left him unable to move or communicate clearly.
After 47 days in hospital and months of frustration, Bud found a path that reignited both his health and his personality hyperbaric oxygen therapy (HBOT) through Aviv Clinics.
A Life Devoted to Work and ServiceBefore his stroke, Bud was the president of the Michigan Resort and Club in Howey-in-the-Hills, Florida.
He managed more than 300 employees, ran a full-service property with golf courses, tennis courts, and restaurants, and thrived on being busy.
“I only worked on days that ended in ‘Y,’” Bud laughed. His passion for hospitality wasn’t just a job it was his identity.
Then at 64, everything changed.
The Day Everything StoppedBud went in for a routine colonoscopy after pausing his blood thinner for atrial fibrillation. A few hours later, his wife found him unresponsive on the couch.
He’d had a major ischemic stroke, followed by another two days later.
He woke in hospital unable to use his right side and barely able to speak. “I spent 47 days in hospital and came home 80 pounds lighter,” he recalled.
What kept him going? The same thing that drove his career his mindset.
“My glass has always been half full,” Bud said. “If you’ve got a victim mentality, recovery won’t be nearly as positive or complete.”
Discovering Aviv ClinicsMonths into rehab, Bud’s son told him about a program in Florida combining advanced diagnostics, personalised rehabilitation, and hyperbaric oxygen therapy.
It was called Aviv Clinics, part of a global network using HBOT to enhance brain and body recovery.
Bud and his wife Jane toured the facility and were immediately impressed: world-class equipment, full medical oversight, and measurable before-and-after testing.
Unlike traditional rehab, every protocol at Aviv is guided by data MRI and CT scans, cognitive assessments, blood work, and fitness testing before treatment even begins.
The 12-Week HBOT ProgramBud enrolled in a 12-week program involving five sessions per week. Each “dive” placed him inside a large multi-person chamber one of the biggest outside the U.S. Navy breathing pure oxygen under pressure to stimulate the body’s natural healing mechanisms.
The idea behind HBOT is simple but powerful: increased oxygen levels encourage the brain to build new blood vessels and restore function in areas surrounding the dead tissue caused by stroke.
“They told me the damaged tissue in the center of my brain was gone forever but the surrounding areas still had hope,” Bud said.
During those sessions, Bud’s wife joined him side-by-side, supporting him through every stage. “If she hadn’t come, I wouldn’t have been as successful,” he said. “It’s exhausting, and having your partner there makes all the difference.”
A Holistic Approach to RecoveryAviv Clinics didn’t just focus on oxygen therapy. Their program incorporated nutrition coaching, physical therapy, and psychological support to help clients rebuild from every angle.
Bud learned how diet could affect inflammation and recovery, began strength training with a specialist who understood stroke deficits, and embraced the full-time job of healing.
“It’s five days a week, twelve weeks straight,” he said. “You can’t miss a session. But when your health is on the line, you’d spend your last penny to get it back.”
Results That Spoke for ThemselvesHalfway through the program, Bud noticed subtle but powerful changes. His energy returned. His confidence grew. Conversations that once felt foggy began flowing again.
By the end of 12 weeks, his doctors showed comparative brain images revealing increased activity in previously low-functioning areas.
More importantly, Bud felt like himself again.
“My personality came back to life,” he said. “Before, I’d sit quietly, thinking responses in my head but never saying them. Aviv gave me my voice back and it gave my wife her husband back.”
Life After AvivToday, at 68, Bud is stronger and busier than ever but this time, it’s on his own terms.
He works out with a personal trainer, travels with Jane, and spends time with their 11 grandchildren.
“I’m happy, but I’m not satisfied,” he said. “You only have two choices every day improve or decline. I choose to improve.”
Lessons for Other Stroke SurvivorsBud’s story offers more than just medical inspiration it’s a reminder that mindset, persistence, and the right support network are essential for recovery.
“Ants don’t give up and neither do I,” Bud said. “There’s no hill too steep for a mountain climber.”
Hyperbaric oxygen therapy isn’t a magic fix, but for some survivors like Bud, it’s been a key that unlocked new potential years after their stroke.
Watch or Listen to the Full Episode Watch:
Listen: Spotify and Apple Podcasts @ Recovery After Stroke
Learn more about Aviv Clinics at aviv-clinics.com and discover Bud’s full journey in this inspiring conversation.
For more stories of hope and recovery, explore:
- The Unexpected Way That a Stroke Became the Best Thing That Happened – Book
- Support Recovery After Stroke on Patreon
Before we dive in, a big thank you to Aviv Clinics for sponsoring this episode and for the incredible work they’re doing to support stroke survivors through advanced hyperbaric oxygen therapy.
Disclaimer: This blog is for informational purposes only and does not constitute medical advice. Always consult your doctor before making any changes to your health or recovery plan.
Hyperbaric Oxygen Therapy Stroke Recovery: How Bud Beucher Reclaimed His Voice and Life with Aviv ClinicsResort president Bud Beucher lost his voice after a stroke, not physically, but mentally. Hyperbaric oxygen therapy helped him speak his mind again.
Learn More About Hyperbaric Oxygen Therapy (HBOT)Hyperbaric Oxygen Therapy – Dr. Amir Hadanny
Dr. Shai Efrati on Hyperbaric Oxygen Therapy: A Game-Changer for Stroke Recovery
Hyperbaric Oxygen Therapy Improves Stroke Deficits
Highlights:
00:00 Introduction and Acknowledgments
01:06 Bud Beucher’s Background
04:37 Life Before the Stroke
09:32 The Stroke and Initial Recovery
16:07 Bud Beucher: Remembering Through the Fog of Stroke Recovery
24:25 Redefining Purpose After a Lifetime of Work
32:19 Hyperbaric Oxygen Therapy and Aviv Clinics
45:19 Healing the Brain, One Breath at a Time
57:00 Progress and Support During Recovery
1:12:22 Post-Recovery Life and Travel
1:21:18 Final Thoughts and Advice
Transcript:
Introduction and AcknowledgmentsBill Gasiamis 0:00
Before we dive in today’s episode, I want to take a moment to thank the incredible people who make this podcast possible. First, a massive thank you to my Patreon supporters. Your contributions help me cover the costs of hosting, editing and producing this show for 10 years. I did this entirely on my own, but your support allows me to continue bringing these stories of hope and recovery to stroke survivors who need them most. If you’d like to support the podcast, head over to patreon.com/recoveryafterstroke.
Bill Gasiamis 0:32
I also want to shout out to those of you who leave comments on YouTube, your insights and encouragement mean the world to me and to other stroke survivors who read them, to everyone who leaves reviews on Spotify and Apple podcasts, thank you for helping others find this show. To those of you who have purchased my book, thank you for supporting this mission and to everyone who watches without skipping the ads. You’re helping this podcast reach more people who need hope now today’s episode is special because it’s sponsored by Aviv clinics.
Bud Beucher’s BackgroundBill Gasiamis 1:06
I first learnt about Aviv when I interviewed two of their doctors for the podcast. The links of those interviews will be in the show notes. I wanted to understand how hyperbaric oxygen therapy works and bring that information to you the stroke survivors. Listening, those interviews were so valuable that we’ve come full circle. Aviv is supporting this episode, which allows me to keep creating this content for our community.
Bill Gasiamis 1:33
So today, I’m speaking with Bud Beucher, who experienced two ischemic strokes at the age of 64 Bud was the president of a major resort, managing 325 employees, living life at full throttle. After his strokes, he spent 47 days in hospital and lost over 100 pounds. But the most devastating loss wasn’t physical. It was his personality. Bud could speak, but the conversations happening in his head wouldn’t come out, that is until he discovered Aviv clinics and their 12 week hyperbaric oxygen therapy protocol.
Bill Gasiamis 2:08
What happened next is a testament to the power of innovative treatment, unwavering mindset and the support of a devoted partner. Let’s dive in. Bud Beucher, welcome to the podcast.
Bud Beucher 2:19
Thank you, Bill. I appreciate it being here with you today.
Bill Gasiamis 2:23
Likewise. Thank you so much for joining me. I wanted to get a bit of a sense of what life was like for you before stroke.
Bud Beucher 2:34
Well, I was the president of Michigan resort and club in Howie and the hills, Florida. I had 325 employees that worked for me, and life was a blur. I had four children, and I was 64 years old when I had the stroke, and as my dad would say, I was busier than a one handed paper hanger, and I only worked in days that ended in why.
Bill Gasiamis 3:03
And Monday, Tuesday, Wednesday, Thursday, Friday, Saturday, Sunday.
Bud Beucher 3:11
Only those that ended in why. My wife is very supportive, and we’ve had a great life together. And you know it my job wasn’t work. It was my passion. And so we we have a hotel, or we had a hotel, we sold it in March or December of 22 and so it was already in the works when I had the stroke, and so that was that was bittersweet. You know, I spent my whole life working here. I was seven years old when we came here to Florida, and my brother Bob and my dad acquired what was then just a golf course.
Bud Beucher 4:01
And we ended up 176 rooms, two championship golf courses, eight tennis courts, 52 slip marina. We had 1000s and 1000s, like 30,000 square feet of public space. We had a Spa Fitness Center. We have ski and trap range. So it was, it was really a full service resort, and like I said, it was my passion.
Bill Gasiamis 4:29
Were you a workaholic?
Life Before the Stroke and Hyperbaric Oxygen Therapy Stroke RecoveryBud Beucher 4:37
It depends upon who you ask, not from my perspective, I love to get up early and go to work. I just enjoyed it so much. And on Saturdays and Sundays, it gave me the quiet time to sit by my desk and kind of think of things, think of things that we could have done. Better, so forensic. So we always looked at holidays and things like that, and we drove a lot of business in that day.
Bud Beucher 5:11
We had like 120 weddings a year. We did like 1600 covers on Thanksgiving, Christmas, Easter, Sunday, Mother’s Day. And I always, always worked those holidays, and so I was up close with the staff and up close with the customers.
Bill Gasiamis 5:34
What were your family’s responses to the fact that you’re always somewhere else for the holidays. You were never available, so to speak.
Bud Beucher 5:47
For Well, my oldest daughter, so my second child is Morgan, and she was 11 or 12 years old, but she before she realized that Thanksgiving did not come on Saturday. So we always, we always had a big Thanksgiving meal. We invited all my brothers and sisters, the kids, cousins. We threw footballs in the backyard. We watched football games. We did all the traditional Thanksgiving meal prep and food. But it just wasn’t on Thursday. It was on Saturday, and that was fine with them. That was fine with me.
Bud Beucher 6:27
And for Christmas, the same way, on Christmas day, I’d set the alarm at four o’clock in the morning. We’d wake the kids up when they were little, and we would tear into presents, and about 730 or eight o’clock, I’d get up and say, Well, I’m going to go to work. Is there anybody that like to give up playing with their toys and come to work with dad? And of course, you know what? The answer was, No. But as as the kids got older, they had responsibilities to the resort.
Bud Beucher 7:02
Yeah, all of all of them, all of my nieces and nephews, at some point in their lives, all worked at the resort. So I’m not painting my children out to be special, although my children are special, yeah.
Bill Gasiamis 7:14
How would you describe yourself? There’s the word driven. Is that appropriate? Is there another word that will kind of describe you in a nutshell? I know it’s a big ask.
Bud Beucher 7:30
Driven would be one word positive would be another word. Optimistic would be another word. Hard working would be another word. My glass is always half full. I’ve got a very positive attitude, even before the stroke, and since the stroke, even more.
Bill Gasiamis 7:51
Great attributes to bring to stroke recovery for sure.
Bud Beucher 7:55
Absolutely, you cannot recover, in my, my opinion, from a stroke, if you are a half empty guy or gal.
Bill Gasiamis 8:05
I mean, yeah, you can benefit from the medical system. You could get the life saving treatment, you could get rehabilitation, you could get all sorts of things. But if the attitude stinks, well, it’s not going to be the best outcome.
Bud Beucher 8:20
What is, what does my sister say? The fish stinks from the head. So if you have a thinking thinking, and you have a victim mentality, your recovery won’t be nearly as positive and robust and complete as if you are working hard to achieve the next goal. And so early on in my recovery, you know, I’m a bit of a hard head. And so my wife and I were walking.
Bud Beucher 9:05
And we were walking on one of the streets here at the resort, and she said, Bud, you’re in the middle of the road. I said, No, I’m not budge. You’re in the middle road. No, I’m not, Bud. You’re in the middle of the road. No, I’m not. And she finally, out of frustration, said, You’re a hard head. And I turned to her, and I looked at her, and I said, You’re damn right, and if I weren’t a hard hit, I wouldn’t be recovering as well as I am today.
The Stroke and Initial RecoveryBud Beucher 9:32
So I spent 47 days in the hospital. I had an ischemic stroke, and my wife was amazing. My son in law was unbelievable. He’s a doctor, so he responded to my wife’s call and came to the condo and I was non responsive.
Bill Gasiamis 9:52
And what was it leading up, up to the stroke? What was it like? Were was there any sense that something was off, wrong? Thing. Did you notice anything before that? That, in hindsight, you can say, I think that was the stroke.
Bud Beucher 10:10
There were no external pressures beyond the normal routine that I had. Now. I will tell you that my wife believes that as a function of my getting the covid shot and the booster that that that aided in my stroke and I there was I went in that day for colonoscopy, because my mother died from colon cancer, and so I’m very aware of that. And the doctor I’m also have AFib So, and I’m on Eliquis.
Bill Gasiamis 11:00
So, the doctor atrial fibrillation, so an arrhythmia of the heart.
Bud Beucher 11:06
Yes, sir. And so there was no reason for me to be bridged. So I went to the heart doctor, and I said, I’m going in, you know, on this day for colonoscopy, what do you think about me coming off my office, and he’s he green lighted it. He said, Fine. And so my last dose was like on a Monday, and I went in for the colonoscopy on March 31 so I’ll make this shit up. That would have been Wednesday, and I had the colonoscopy at one o’clock, and I came home with my wife. She was the Uber driver, if you will.
Bud Beucher 11:48
And, you know, like all great colonoscopies, you’re full of air and you don’t feel real good, and you’re tired, and I just wanted to lay down on the couch and watch a little TV. And my wife needed to stretch her legs, so she said, I’ll go for a walk. I said, Great, I’ll be right here. And you know, her boss called me because he had a reservation at the resort and was going to need to cancel it because something came up. And I said, not a problem, Casey, I’ll go ahead and cancel for you. So I called Henry and canceled this reservation.
Bud Beucher 12:25
She came in about five minutes later. She was talking to our oldest son, Nicholas, and when she hung up, I was on the couch, and my glasses were off and the TV was on rather loudly, and she said, Bud, what are you doing? And I didn’t respond. And then she went around the little pass through, and she looked at me. She said, This isn’t funny.
Bill Gasiamis 12:51
We’ll be back with more of Bud’s remarkable story in just a moment. But first, I want to thank Aviv clinics for sponsoring this episode. Bud’s journey with hyperbaric oxygen therapy opened my eyes to what’s possible when you combine cutting edge treatment with comprehensive rehabilitation. VIBs, 12 week protocol isn’t just about sitting in a chamber, it’s physical therapy, cognitive training, nutritional counseling and personalized care, all working together. If you’ve been wondering whether hyperbaric oxygen therapy might be right for you.
Bill Gasiamis 13:23
Aviv clinics offers a diagnostic testing upfront to determine if you’re a candidate. That transparency and thoroughness is what impressed me when I first interviewed their doctors, and it’s why I’m proud to have them supporting this episode. You can learn more about Aviv clinics and their approach to stroke recovery @ aviv-clinics.com. Link will be in the show notes. Now let’s get back to bud and hear how he went from Silent dinners with his wife to traveling the world and reclaiming his life.
Bud Beucher 13:55
And I didn’t respond, but my eyes were moving, and that’s when she called 911, and our son in law, Alex, is a surgeon general surgeon, and so he has privileges at the hospital group here in Orlando or MC, and he came up before he got there, before the paramedics came and the ambulance. And so you know, between him and his wife, him and my wife, they made the decision that ormc had a level one trauma center, and that’s where we should go. And so the ambulance came. And I don’t remember any of this.
Bill Gasiamis 14:39
This all stuff that you’ve been told by the wife and the people who are around.
Bud Beucher 14:44
Yeah, and so they told my wife, because they would have airlifted me, but there were storms in the area, so it wasn’t safe to fly the helicopter. So the ambulance driver said, don’t try to keep up with us. It won’t be safe. So we’re maybe 35 – 40 minutes from downtown Orlando, and of course, Alex knew that there was a three hour limit, or real close to three or four hour limit.
Bill Gasiamis 15:13
So he’s seen, to be seen for a strokes, potentially give you the blood clot busting treatment.
Bud Beucher 15:21
Yeah. And when I got down there to ormc, they were very good. They communicated with my wife, and, you know, doctors speak in their own language, so thank God we had Alex, because he was able to interpret what they were saying, Yeah, and so I got the I got the TPA and the thrombectomy. So it was a blood clot and got lodged in the center of my brain. And you could see it through the Aviv pictures that they took as I was being onboarded in February of 23.
Bud Beucher: Remembering Through the Fog of Stroke RecoveryBill Gasiamis 16:07
Yeah. Now let’s go back a little bit. So when was the first moment that you became aware that there was something wrong with you? Not Do you know you’ve missed the opportunity to understand what was happening to you. The stroke kind of put your brain offline. Most of the stuff you’ve told me was through stories that other people have told you, but in in the process, did you become aware that you’re unwell at some stage?
Bud Beucher 16:35
No, I did not. I was, they were concerned about me living. So it was I spent 47 days in the hospital, and maybe a half a dozen of them was in ICU, and so I can remember being wheeled down the hospital. So I had a second stroke, actually, on April the second, and I can remember being wheeled down the hallway in the middle of the night, and I kept thinking to myself, remember this, remember this.
Bud Beucher 17:12
And I can remember seeing the fluorescent lights in the ceiling going by me, and I was going down somewhere in the hospital for tests. And, yeah, that that, and, you know, little bit here and a little bit there. But in terms of continuity, it really wasn’t until probably two weeks into my stay.
Bill Gasiamis 17:39
How long after the first stroke was the second one?
Bud Beucher 17:43
I had the first stroke on March 31 and the second stroke on April the second.
Bill Gasiamis 17:48
Was that gaming stroke? Again? Was that another clock? What was it?
Bud Beucher 17:53
Yeah, so the what? And of course, nobody ever knows. That’s why it’s practicing medicine. They thought that a little piece of the first clock broke off and traveled through the brain until it got into such a narrow spot that it it couldn’t travel anymore. But they had given me blood thinners at that time, clockbusters and things like that. So, you know, it didn’t have any effect on me.
Bill Gasiamis 18:25
Okay, so you’re around two weeks in, you’ve had two strokes, and you start to realize that there’s something going on. What were the deficits that you had to deal with? What did you notice that was wrong with you your body?
Bud Beucher 18:37
Well, I couldn’t use my right side and my left side was very weak. And, and, and I was pushing 280 pounds.
Bill Gasiamis 18:53
You were overweight.
Bud Beucher 18:55
Well, I don’t like the way you said that. You sound like my wife.
Bill Gasiamis 19:01
Wow, maybe that’s the problem. You don’t like the way it sounds.
Bud Beucher 19:06
You know, I’m just not tall enough for my weight.
Bill Gasiamis 19:09
I hear you. Okay, makes sense then.
Bud Beucher 19:14
So as I was withering away in the bed, I ended up coming home at just like 80 pounds lighter than I went in the hospital, and then subsequently I got down to 180 pounds so like 110 pounds I lost. And now I’ve I’ve been able to put weight on. It’s very difficult for me to put weight on, and I’m almost up to 198 pounds.
Bill Gasiamis 19:49
Okay, so the risk factors for stroke is age, weight. What? Smoking, drinking, any of that stuff.
Bud Beucher 20:03
I only drank in days ahead. Why? Okay, understood.
Bill Gasiamis 20:08
So then only about high blood pressure. Did you have high blood pressure? Yeah, I have them all. You had them all, wow, high blood pressure, just now smoking, and you had atrial fibrillation, yeah, yeah, so it was a cocktail storm. Yeah, perfect, perfect storm for potential stroke. So when you woke up, you couldn’t move your right side. And then what, how do you, how do you kind of deal with that? You, get the news, or do you realize that it’s not working? How did your brain wrap its self around that information, that news.
Bud Beucher 20:57
You know, and I say, Thank God. Thank God. I have four children, and they’re very dedicated to me. My wife is extremely dedicated to me, and so and my son in laws and daughter in laws are very dedicated to me. So I didn’t have a lot of alone time in the hospital. And so my son in law, Alex, He’s the doctor. He got me going right away. He bought any toy he could find on Amazon as a rehab toy, and he convinced me. Wasn’t hard to convince, but I did, if I didn’t use my extremities, they’d atrophy, the muscles would atrophy.
Bud Beucher 21:47
So he got me these squeeze balls that had little spikes on them and things like that. He got me bands. And so I still couldn’t use my right side, and at one point, this doctor who saved my life came in, and he went to shake my right hand, and I moved my right arm. And so he said, aha. So he knew that the connection between my brain and my right side was still good. And so, you know, I would tell my wife, I’m happy, but I’m not satisfied.
Bud Beucher 22:32
So going back to the story about me walking in the middle of the road, me insisting that I wasn’t she said to me, You’re not very happy. I said, Yes, I am. I’m really happy, but I’m not satisfied. So what that means, Bill is, every time you set a goal, that’s a goal in the future, right? And then when you achieve that, you have to set another goal, and if you don’t, you’re complacent.
Bill Gasiamis 23:07
Yeah, there’s no less resting on your laurels. You need to just continue the journey towards improvement, becoming better, more efficient, whatever the words are, stronger, stronger, yep, more wise.
Bud Beucher 23:28
Other than last night, I virtually given up all drinking, and I’ve lost, you know, maybe 90 pounds at this point.
Bill Gasiamis 23:38
I mean, great, you had a deficit with your hand, but also was the deficit with your leg? Was there an issue with walking?
Bud Beucher 23:45
Yeah, I had a very hard time. They sent me home in a wheelchair with a walker and a leg brace. And I was living at that time in a in the second floor of a walk up condominium, and so my wife and I had to figure out how I would get my fat ass up the stairs, and it probably took me, you could convince me, 20 or 30 minutes, with her help, to walk up the stairs. And I’ve seen the videos of me in the rehab room at the hospital, and, boy, I’ve come such a long way.
Redefining Purpose After a Lifetime of WorkBill Gasiamis 24:25
Yeah, that’s great. So how do you come to terms with what’s happened to you? So seven day a week at work, probably, I don’t know, maybe 90 100 hours of work a week at least, yeah, and then all of a sudden that stops entirely, and you have a completely different task. You’ve been doing that for decades and decades and decades. Your identity is all abou the work, the way that you go about work, the people, the amount of work that you’re doing.
Bill Gasiamis 24:59
All of your identity is built around how you how you interacted with the world for the majority of your life, and now it’s completely different. How do you come to terms with that? Do you have to come to terms with it? What’s the adjustment?
Bud Beucher 25:16
The adjustment was easier for me than it was for my wife. I’ll be very honest with you. I say it wasn’t easy for me. It wasn’t easy for me, per se, but you know, so I’m the youngest of six children, and the difference between my oldest, my only brother, Bob, and myself is 16 years. So he’s now in his middle, early 80s. And then I have four sisters, and the difference between myself and my youngest sister is four years.
Bud Beucher 25:57
And so on April the first they asked my sister, Michelle, who’s the number three girl? Actually, they probably volunteer you get to take over the resort. So she ran the resort, and she did it very well. I give her a lot of credit. It’s not an easy job. And you know, we all, we all do things differently, and her style was much different than mine. But you know what? It’s okay. There’s more than one way to skin a cat.
Bill Gasiamis 26:36
That’s my favorite saying. Were you somebody who was sort of happy to pass the mantle on. Was it a relief?
Bud Beucher 26:50
It came with some anxiety, a little bit, because I would see Michelle, and I’d see her doing things with the staff that I wouldn’t do, but I couldn’t say anything to her, because I didn’t want to get between her and her employees. And you know, I had to focus on my recovery. So, you know, it’s about a mile from my condo at that time to the lobby. So I’d get dressed, I’d walk down, I’d work in quotes, I’d go back up for lunch. I’d lay down and take a nap for a couple hours. I’d walk back, I’d work and then I’d walk home. So I was incorporating that commute, if you will, with my rehab.
Bill Gasiamis 27:51
Okay, so you went back to work after the stroke, after coming home, how long did it take for you to come home and get back to work?
Bud Beucher 28:03
I was released from the hospital on May the 17th, and I probably came back to work early June.
Bill Gasiamis 28:10
Okay. Was it too soon?
Bud Beucher 28:14
It depends upon how you ask.
Bill Gasiamis 28:16
I’m asking you clearly not. Okay. I asked your doctor, your doctor son.
Bud Beucher 28:25
He would probably say no, okay. He thinks that I needed to have a purpose, yes, and that purpose for me was the resort and my employees and it was good for me to see my staff, even though they weren’t my staff any longer, and it was good for me to hear those accolades and support. It was it was good.
Bill Gasiamis 28:59
I imagine there’d be some satisfaction, definitely in getting back to where you were before, even in a different capacity. But then also the encouragement from other people, so people that you interacted with, the lovely faces or that type of thing that would be amazing, all right, relate to that. That’s perfectly fine. And also going back to work, I do consider to be a therapeutic thing, both emotionally, mentally and physically. And I think it’s part of recovery.
Bill Gasiamis 29:29
And if you’ve got a great employer for people who are not self employed, for example, if you’re got a great employer who understands the extra needs that a stroke survivor might have to ease up on the work and to have a little bit more downtime, then they could play a massive role in supporting people to get back.
Bud Beucher 29:50
Yeah, you in my opinion only, you can’t stay at home and. Look at four walls, and yet, in the same respect, you can’t go back to work and go at the same pace that you had done before the stroke, at least not in my case. Now there are all different kinds of strokes.
Bill Gasiamis 30:15
I would say, in nobody’s case, I would say everyone needs to attend to healing more than attend to their work, even if it’s just a short amount of time or an extended amount of time, whatever it is, the brain healing journey takes a while, so it’s really important to perhaps incorporate work, but not make it the main goal. And anyway, Stroke Recovery doesn’t allow people to go back to work the same way that they went back before, especially in the early days. It’s so hard.
Bud Beucher 30:47
No, it truly is. And I’d be lying to you if I said that I had the stamina today at 68 that I had at the stroke when I was 64 first of all, I was in that groove, you know what I mean, and I didn’t know any better.
Bill Gasiamis 31:06
How much did your right side come back online in the early days, in that time where you were walking back to work and up and down and all that type of thing, how much did your right side come back online. Were there still areas of improvement that needed to happen?
Bud Beucher 31:25
Yeah, in fact, there’s still areas of improvement. I go to the gym probably two to three days a week, and I have a personal trainer, and his day job is in home physical therapist. So he’s got both the gym experience as well as the, you know, the deficit care. And so Corey is his name, and I was there this morning. And, you know, I would say that I am 75% back.
Bill Gasiamis 32:16
How about then?
Hyperbaric Oxygen Therapy Stroke Recovery and Aviv ClinicsBud Beucher 32:19
No, I could hardly walk. Like I said, they sent me home with a wheelchair and a walker and leg brace. And if I was able to walk down the stairs and of the condo and get through the condo parking lot, I was exhausted.
Bill Gasiamis 32:36
Okay, so I was exhausted. So what kind of rehabilitation. Did they throw at you when you were in rehab?
Bud Beucher 32:45
Well, so when I was at the hospital, they gave me speech therapy, occupational therapy and physical therapy, and what I got was three, one hour sessions for each of those disciplines, and literally, I would sit in my wheelchair at the edge of my door and I checked my watch, and if the physical therapist, who was great, by the way, showed up five minutes late, I said, You owe me five minutes.
Bill Gasiamis 33:20
Fair enough.
Bud Beucher 33:21
And when we got done, she wanted to take me back, and it was five minutes before we were due to get out, I’d say, no, no, no, you owe me five minutes, and we’d walk up and down the stairs. Now it wasn’t pretty, and I mean, I was, I was huffing and puffing, but I wanted, I wanted every minute that I could get, because I just, I just needed to recover. I’ve got 11 grandkids. I want to get on the ground and play with him, yeah? I want to hold him in my arms.
Bill Gasiamis 33:58
Yeah, fair enough. That’s great motivation. So this episode is sponsored by Aviv clinics. They those guys I discovered oxygen hyperbaric oxygen therapy a little while ago, just through just trying to work out what types of information and tools that I could tell stroke survivors about regularly, that hopefully some people might be able to benefit from, that they didn’t know about, right and the Aviv clinics, I’ve done three interviews with the guys from Aviv clinics before now, because I wanted to share what hyperbaric can do.
Bill Gasiamis 34:39
I found in my mind, I found the right type of people to join me on the podcast to share that information, and one of the things that I liked about it was that they they had the diagnostic tools before the. Somebody committing to their protocol to determine whether or not somebody was a candidate, which is something you don’t get a lot in other kind of avenues of recovery, whether it’s stem cells, whether it’s etanercept or whatever the other options are, you very rarely get the diagnostic part is somebody a candidate, right?
Bill Gasiamis 35:24
So it was really lovely to share that bit of information and not to and and to do it just willingly, without requiring sponsorship or anything like that. What’s cool is that now we’ve come full circle, and the guys are supporting me, as I felt I’ve supported them, and it was just brilliant. And when they said, you know, would you consider another episode? I thought absolutely I would. And a sponsored episode is amazing, because that helps the podcast keep going, helps me grow community, share stories, hopefully get to 1000 interviews.
Bill Gasiamis 36:03
So I want to be transparent about that. Firstly, for the people listening, I’ve already, at the beginning of this episode, announced that this is a sponsored episode, that it is about Aviv clinics and your journey and and now I want to talk about Aviv. I want to understand how you stumbled or came across the hyperbaric oxygen therapy as this is something that you might want to consider. How does that happen for you? Where? Where did that happen?
Bud Beucher 36:32
Our oldest son, Nicholas, is the CO-CEO of a company called Tavistock, and they are in Orlando, or actually they’re worldwide, but they have a very large presence in Central Florida. They are the founders, the creators, the developers of Medical City, so that’s where the VA hospital lives, and you know the new Moores clinic, and you know, all those great organizations, and they’ve got houses and everything, so anyway, long story short, they called on Nicholas, or Nicholas called on them to see if Aviv would open up a satellite office down at Lake Nona.
Bud Beucher 37:19
Because he is committed to the Aviv concept. And so when I had the stroke, he spoke to his mother, maybe in the fall of the year, and said, you know, you all should take a look at the Aviv program. It’s fascinating. I’ve been there. Dave, at the time, was the president of Aviv, and so he came down to Lake Nona, met with my son and our son, and so we went up and toured the facilities. And they are world class, without account. And they are obviously, in retrospect, they’re not snake oil salesmen.
Bud Beucher 38:06
There’s always somebody who’s got, as you said, and you didn’t say it in these words, they’re trying to pull the wool over your eyes some way or another, and it’s always data driven. So when I found out that they were and you correct me if I’m wrong, in Israel and Dubai and then Brownwood, which is 3540 minutes up the road from where we live, I thought to myself, Wow, this has got to be great for me. Now, don’t get me wrong, it is a full time job, and it’s 12 weeks, 12 weeks long, and it’s a week or 10 days of onboarding.
Bud Beucher 38:57
And they go through a battery of tests, both physical emotional and, you know, cognitive and and then on the way out the door, they repeat the test, so they compare the before and the after. Now the after test, maybe is six months after, but they do do that comparison, and then they they present that work to you. And so they have nutritionists, they have psychologists, they have MD doctors, and, my God, the the hyperbaric chambers. They’re like, they’re like, first class airplane seats, you know?
Bill Gasiamis 39:42
I mean, it’s really cool, and it’s a room you walk into it, don’t you?
Bud Beucher 39:46
Yeah, you stand up and and there’s, I don’t know, clients, I guess is what they call them. So I was one of their clients, and my wife came with me because I knew. If she didn’t come with me, I would, I would tend to be less successful. We’ve been married for 43 years, and we met at the University of Arizona in the fall of 1976 so I’ve been with this lady. She’s been with this man since 1976 the fall.
Bill Gasiamis 40:20
Wow, let’s go back a little bit. We’ll talk about that in a minute as well. Okay, I found that comment interesting that if she wasn’t there, you would have tended to do have a less successful recovery. Let’s go back though before we talk about that. I’m very interested in that, because you told me at the beginning that your mindset, you alluded to your mindset being a completely different thing compared to what you just said now.
Bill Gasiamis 40:47
So I’m going to dig into that in a little bit. Tell me about the onboarding so you discover a VIV and then you say, I think I might want to access your services. Yes, and then what happens? What do they do?
Bud Beucher 41:04
Then they make arrangements for you to go right in the same building and get a series of tests through Lake imaging. So Lake imaging has a facility right there in that same complex, and so you do CT scans and MRIs, etc, etc, blood work and things like that. And then they give you this huge report. I happen to have it here. And they give you this huge report, and it’s got color imaging of my brain. I don’t know if you can see it.
Bill Gasiamis 41:38
I can.
Bud Beucher 41:40
And the black box are where the stroke was right down the middle of my head and on basically the, I guess the left side, because my right side is affected. And they were very honest that tissue is dead and will never come back, not in a million years. It doesn’t matter what I do. But the reason for the hyperbaric chamber is, the theory is that you go for two hour dive, 20 minutes on pure oxygen, and then I think it’s five or 10 minutes on just whatever the makeup of the air is in your in your body is kind of freaking out, and it’s saying we don’t have enough oxygen.
Bud Beucher 42:31
So your your body is growing, not just stem cells and but it’s regrowing vessels and so the theory is it’s like a nuclear bomb. You get closer to the epicenter and it’s dead. Never come back. But the further you go out, out of the epicenter, you’ve got hope. So in arrears, you know, we did we I had a comparative report, and it showed my brain activity colored, and it was much improved.
Bill Gasiamis 43:11
So, but the onboarding goes for how long? Two or three days. Okay, so they’re determining your your baseline, for example, there, yes, your deficits. They’re checking your brain activity. They’re checking to see what is recoverable, what isn’t recoverable. And then they determine the protocol and what you’re going to experience after that. In that in those early days.
Bud Beucher 43:42
They’re very honest with you. They’re very honest with you. They said it very clear expectation.
Bill Gasiamis 43:48
And what do they say? They say you might not get this back. This might happen. That might happen. How does that conversation go?
Bud Beucher 43:54
They never limit you. You limit yourself. Okay, so as we went through, I would say, about halfway through the 12 week program, both my wife and I realized I was coming out of my shell. So I’m typically a very gregarious person, and I think of myself as pretty funny, and I was pretty silent. I was, I was playing all of these conversations in my mind, but I wasn’t verbalizing. So if we were in a room and you were talking to my wife, I was playing my participation in my head. I just wasn’t verbalizing.
Bill Gasiamis 44:35
It okay? So when you’re in the hyperbaric chamber, you walk in one, is it one session a day? Is it multiple sessions?
Bud Beucher 44:45
One session of days, one session per day. And you, you, you’re supposed to pick a dive time that you’d like. So either seven in the morning as an example, and they have four chambers, all told. Seven, 911, one, I think maybe one is the last time. But it could change, since I was there in the fall of the spring weather of 22 – 23.
Bill Gasiamis 45:13
And you pick your time and you walk in, do you sit down?
Healing the Brain, One Breath at a Time with Hyperbaric Oxygen Therapy Stroke Recovery
Bud Beucher 45:19
And there’s probably 14 client seats in that chamber. It’s the largest hyperbaric chamber outside the US Navy. Wow. In the world. They have these chambers built for them in Australia.
Bill Gasiamis 45:36
In Australia, and we don’t have that opportunity to access that type of care here at all. So you’re in Australia right now. Yeah, we’re in Australia. So we have access to hyperbaric chambers, but you have to go to like a health club or a some kind of other like organization that has facilities that you might access Yoga, you might access all those other things there, and then they may have a chamber.
Bill Gasiamis 46:08
But it is a individual based, yeah, and it’s not just one person chamber, yes, and it’s not and there’s no medical person on site. There’s no way to determine whether you’re a candidate, whether you should be in there, what the risks are. There’s nothing like that. So you’re kind of going in a little bit, I suppose, you’re going in for a like, a bit of a treatment that’s not medically based. It’s more of a idea that you go into the chamber and it’s benefiting from you, but there’s no protocol. There’s no understanding.
Bud Beucher 46:48
So when you sit in these chairs, and again, I use the term airplane seats, very first class, you have a arm that an iPad gets attached to, and you’re supposed to play games with them. Excuse me. And so it’s golly, I can’t even think of name it.
Bud Beucher 47:16
Anyway, they have all these games, and they get harder and harder, faster and faster as time goes on. HQ, brain, I think. Ah, brain. HQ, yeah, yes, that’s it. And and so they they decide what you’re going to play while you’re in the chamber based on your interactions with the staff. So whatever your deficits are, they’re going to play the games that deal with that deficit. Yeah, so, so if memory is your deficit, guess what? You’re going to play memory games.
Bill Gasiamis 47:59
So the memory games are designed by Brain HQ. Brain HQ was, I think, in part, developed or started by, or founded by a gentleman called Michael Mirza Nick, somebody who I’ve interviewed, who is considered the godfather of Neuroplasticity, because in the 90s, he was the one and and the teams that he worked in, the scientific teams that he worked in, that kind of break broke through and developed the first cochlear implant for people who had lost their Hearing and and brain. HQ is designed to encourage Neuroplasticity.
Bill Gasiamis 48:43
That’s the entire point of it, right? And from my understanding, when you’re in a hyperbaric chamber receiving the benefits of the hype of the oxygen therapy, as well as being in the dive that the brain is trying to support, itself by releasing the stem cells and doing all the lovely things that it does when it’s in those conditions, and at the same time.
Bill Gasiamis 49:11
If you’re firing off the particular tasks that you have deficits In that that is going to kind of pinpoint the area where right Neuroplasticity needs to happen, and it will support those, the growth of those new neurons right, more so than it would have if, if it was exercise that you were doing outside of a chamber.
Bud Beucher 49:39
Right, you got it.
Bill Gasiamis 49:42
You should work for Aviv well, they haven’t offered yet, and I’m far, far away, but it’s okay. Maybe you can open up a satellite office. Maybe, maybe I could be the guy. Yeah, yeah. But the. That idea I’m really fascinated by, and that’s kind of why I initially interviewed the guys, because I wanted to understand how it worked, and I wanted to understand how it was different than the therapy that I could quote, unquote, get at the Health Spa, which is not really that targeted. It may be beneficial, but it does also concern me.
Bill Gasiamis 50:25
And I have spoken to a few people that have been to a health spa type of scenario, walked into a chamber, it has concerned me a little bit that what happens if something goes wrong? What if you need to come out of the dive? What if you need to be treated medically, right? You have an inner ear problem, and the pressure causes challenges, like, there’s a whole bunch of things that concerns me about them.
Bill Gasiamis 50:49
And that’s kind of why, like, because I almost as somebody who can’t access hyperbaric medically through the Australian Medical System at all, which I’ve tried, by the way, I’ve asked my neurologist, my surgeons, I’ve asked the doctors like there is no way, unless you are experiencing the bends from diving in Australia, you cannot access a proper medically supervised hyperbaric chamber.
Bill Gasiamis 51:21
So that’s kind of why I know about it, because I’ve spent a lot of time trying to get that type of help myself. So you said it’s a full time job. Like, what does that mean? Are you staying at the facility, or because it’s close to home, you’re traveling backwards and forwards.
Bud Beucher 51:42
So we would get in the car. We had to be there 30 minutes before the dive time. So I’ll make this up up. Let’s say we were on the nine o’clock dive. So we leave our house at 730 we’d get to the parking lot anywhere from 10 after eight, eight o’clock, depending upon how fast I drove. And we’d walk in, we’d go in the back. They always had somebody there that takes our vitals and things like that.
Bud Beucher 52:18
Then we would sit in the waiting room, and we would wait, and then you had to change your clothes. You had to wear special shorts, special shirts, you know, booties, things like that, because you don’t want static electricity, because fires in hyper bear chambers don’t mix.
Bill Gasiamis 52:40
Wow, okay.
Bud Beucher 52:43
And there was always somebody from the Aviv staff inside the dive chambers. So it’s 12 weeks long, so that’s 60 sessions, and then they would and it was five days a week, and they didn’t want you ever, if at all possible, to miss a session. So it’s one after another after another for 12 straight weeks. So we would go, and then they would schedule things like PT, weight training, nutrition education, psychological, you know medical.
Bud Beucher 53:27
Before or after the session, and it’s got a big waiting room in it, and it’s very first class, and They’ve got tile floors. And so even still, today, I don’t walk backwards very well, and so I would walk backwards inside the lobby waiting for my next session to start, walk back and forth backwards, and I’d follow the joint lines, and I always have a sense of where I was, wow. So I’d stop before I ran into the wall.
Bill Gasiamis 54:07
So the so the dive is only one part of the treatment on the day.
Bud Beucher 54:16
It’s a significant part. But they treat you in a holistic way. So the brain HQ is part of it. That’s also in the diet, but that’s a separate part of it. And then when you’re done, they allow you to continue with that for one year and and meaning it’s included the one year is included in the subscription. And then the PT is as you can get in, and they put you on these wild treadmills. They’re really cool. You get a harness. So you can’t fall down. And then you have these games that you play. They’ve got, you know, reaction times and things like that.
Bud Beucher 55:10
And you got to look for the they flash. And then they’re, they’re like, five places wide, five places up, and they change colors and they have now, the faster you get, the subtler the differences are. So when you’re when you’re a rookie, all blue will show up, and there’ll be one that’ll be orange. You got to find the different bird as an example, and they judge you based on time and accuracy. So it’s very, very analytical. There’s, there’s very little subjective.
Bill Gasiamis 55:53
Understand, very thorough. Yeah, so the protocol 12 weeks, but you do you get assessed in between those 12 weeks? Is there any time frame where there’s an assessment? Or do you just go in for the full 12 weeks and then you get assessed again at the end?
Bud Beucher 56:12
You’re assessed all the way along. Now, you’re not necessarily assessed by the dive, but you’re assessed all along. So you on the brain, HQ, you know, you do it four days, and then on the fifth day, you kind of do a test, if you will. And then that test at the at the periodically, will accumulate. And then they tell you “Oh, you’re doing better here. You’re doing better there.”
Bill Gasiamis 56:45
So there’s feedback so that you can see your problem.
Bud Beucher 56:48
Yeah. And even in PT, there’s feedback, and in the weight room, where you do calisthenics and things like that.
Progress and Support During RecoveryBill Gasiamis 57:00
Yeah, wow. I never knew about that part of it. I thought the protocol was literally only the hyperbaric stuff. That’s cool, knowing that all those other things happen.
Bud Beucher 57:11
Yeah, and then they have, they have a dietitian, and he talks to you about eating healthy and things like that. And
Bill Gasiamis 57:17
what was that like, learning about diet? Were you an unhealthy eater in comparison?
Bud Beucher 57:25
In retrospect, I probably was, you know, because I was 100 pounds overweight, yeah, so it’s hard to be healthy, eating healthy and being 100 pounds overweight.
Bill Gasiamis 57:38
And how did you find the adjustment? Did you stick to that diet, dietary change? Did you understand the benefit of it and why it was necessary?
Bud Beucher 57:48
Yes, I did, and I’ve stuck to it pretty well. Like today, I had granola with a protein drink, and then I put protein powder in my blender, and I put protein drink in that, and that was my breakfast. And for lunch, I had a bagel with jelly, not a good choice, but then I also had a granola with a protein drink mixed on top of it.
Bill Gasiamis 58:18
What would you eat for dinner?
Bud Beucher 58:20
I’m going to my brother Bob’s house so whatever Linda can serve.
Bill Gasiamis 58:27
Yeah, well, you know, I reckon there’s a bit of improvement there, even at granola and and bagel. I reckon even improvement that can be done. But I understand, like, the benefits of perhaps not drinking the amount of alcohol that you were drinking.
Bud Beucher 58:50
They tell you, when you’re in the hospital that you’re not supposed to drink period for the first two years post stroke. And I was pretty good with that. Maybe I had three or four drinks in total the first two years. And I’m not proud of it, but last night, I had three drinks. I mean, what the hell Life’s worth living, right?
Bill Gasiamis 59:18
Well, maybe let’s unpack that a little bit. There’s a couple of things I want to unpack and check up on you on. So drinking, the issue with drinking is that it damages the brain cells, right? Because it crosses the blood brain barrier. So any work that you’ve done, you’re potentially putting at risk and the damage in the area that already is dead, you might extend that. You might make it worse. So you’ve spent all this time, money, effort, in your recovery, and then, you know, you put alcohol in in your body and in your brain, and it’s, it’s like a proper poison.
Bud Beucher 59:54
Hold on, hey, Jane, yes, can you find a charging cord? For me, really, one please, for your phone. Yeah, my phone, yes. Thank you dear.
Bill Gasiamis 1:00:06
So that’s kind of the the thing, like I would, I would push back on that for that reason. Now, there is tons of studies that also say that there is no safe amount of alcohol for any human being, whether they’ve had a stroke or not, and I know that’s hard to say, because what we’ve had to deal with is we’ve had to deal with all of the advertising, all of the marketing.
Bill Gasiamis 1:00:30
All of the social side of why people should drink and why it’s okay to have one glass or two with dinner and all that type of thing. But the reality is, is that if you’ve had a stroke and you’ve done so much work and effort to be better, alcohol stops people from being better.
Bud Beucher 1:00:53
Well, you know, and I’m not defending myself, so please, no, I probably have a three or four drinks in a month? Yeah? Just last night I happened to have three.
Bill Gasiamis 1:01:12
Yeah, and again, I’m not saying that people should never have a drink. What I’m saying is that’s what that’s what the data says. So people who should be aware of it, and doctors in my mind, especially doctors treating people with neurological challenges, in my mind, would be best advising their patients the way that I advised you just then, making them understand like you’re putting all this effort into recovery.
Bill Gasiamis 1:01:42
And you know alcohol is is sort of one step back, just doing it to yourself. Now you also said that if you didn’t have your wife with you at those sessions, that you perhaps wouldn’t have recovered as much as you have. So why? Why is that? How did she support you in that part of your journey?
Bud Beucher 1:02:06
Well, you know, I knew I had to go. I wanted to go, and I knew I wouldn’t be as successful on my own as I would be with Jane. So what does that mean? That means I’d be driving up there by myself. I’d be going through the dive by myself. I’d be driving home by myself, and I’d be really tired at the end of the day. So it’s probably round trip, all included. It’s probably on a short day from Howie up to Vive, the dive back to Howie. If you have nothing going on other than just that, for that day, you got to figure it’s going to be four plus hours.
Bud Beucher 1:03:01
And if you have a session, it’s not like you get out of the dive and go immediately into PT, you might have to wait for an hour or two, and so it could be anywhere from five hours to as many as seven or eight hours. So that’s why I say it’s a full time job, yeah, and it’s in its I mean, it’s exhausting. And I slept a lot, and Jane did too, and yet she she wasn’t trying to recover from a stroke, but she went through the same tests, the onboarding tests that I did.
Bud Beucher 1:03:37
She went through the same protocols and and sessions that I did, and she she got the same measurements that I did, and it really upset me that she did better than I did.
Bill Gasiamis 1:03:59
Wow, so you guys went through it together, the entire 12 week treatment. I thought she was just there in body, but she actually attended all of the sessions at the same time.
Bud Beucher 1:04:15
She sat next to me inside that dive chamber for 12 weeks.
Bill Gasiamis 1:04:20
Okay, Well, I love that that happened, because there is nothing better than doing recovery with somebody that’s supportive with a community of people who are like minded. It just makes everything better. Going to the gym is boring, unless you know somebody at the gym, right. What am I going to do? Go to the gym and push weights? You know, there’s some kind of weird motivation.
Bud Beucher 1:04:49
We saw a lot of couples that would do this together, and they were married, and they were supportive of each other, sometimes the man. In my case, was there for a reason. Sometimes the wife was there for a reason, right? But you know what? She’s my life partner, yep. And in terms of expense, what? What is your health? Course, my goodness, I mean, you’d spend your last penny to get your health back?
Bill Gasiamis 1:05:23
Yeah, absolutely everybody would. I’ve met so many stroke survivors that don’t have access to endless amounts of resources. Finances are always an issue after stroke, especially if you haven’t if you happen to have a stroke and you haven’t established a good war chest, or, you know, it’s quite a challenge, and and they would spend every last and they do spend every last dollar to get their health back.
Bill Gasiamis 1:05:54
And there’s only sometimes so far that people can go, and the spectrum of stroke is so wide that I might not be the exact representation of what stroke looks like for somebody else and somebody’s in a wheelchair is not the exact representation of what stroke would look like for some third person. So it’s it’s lovely that you combine that with your partner. I think one of the luckiest things that I went through was a really supportive partner.
Bill Gasiamis 1:06:29
She was everywhere that I was when recovery was happening. We didn’t understand, we didn’t know about our hyperbaric back then. But again, we can’t access it, even if we do know about it, unless we come to the United States and go through the clinic.
Bud Beucher 1:06:44
Well, if you want, you stay with us, Bill, we’re only a half an hour south of the brown wood.
Bill Gasiamis 1:06:51
Well, I might take you up on that. You never know. Keep my number. Yeah. So it’s really cool. I want to speak about that, and I’ve spoken about that, that part of your journey with your wife, because it’s so important to have community, to have people who support you, to have people who have your back, whether you’re they’re your wife or just the neighbor, or an Awesome therapist or a doctor, somebody you have to reach out and ask people to support you if you haven’t got somebody directly, because it’s such an important part of recovery.
Bud Beucher 1:07:30
So you You are so right? And as as we went through the program, we ran into a lot of people from all over the world, and I don’t remember his name. There was this one particular young man. He probably was 30, and he’d taken a fall, and he was from South America, and he had traumatic brain injury, and his mom and dad tried to get a visa to bring him to the States for treatment, and I’ll make this shit up, for probably four years, and they finally got the visa. And when he first came in, we would see him, and he would be in a wheelchair.
Bud Beucher 1:08:21
And as he went through, he then was getting out of the wheelchair. And we’d say hello to him every day, and you know, how are you? How you doing? And toward the end, when we were graduating, he was looking us in the face and acknowledging us. So you know, he’s living proof that Aviv works.
Bill Gasiamis 1:08:46
So and you too, right? So what about your journey? So what was different from day one to the end of day 60?
Bud Beucher 1:08:59
My personality, my personality came back to life. It was dormant. Like I said, you know when, when, when I got out of the hospital, we Jane and I would have dinner together, and it would be an hour and a half of silence. Now I’d be, I’d be responding to her in my head, but I wasn’t verbalizing, and she was sad and lonely that I was not there. So Aviv not only gave me my life back, but Aviv gave her her husband back.
Bill Gasiamis 1:09:43
That’s pretty cool. What about your deficits? What about your physical injuries? How did they improve?
Bud Beucher 1:09:51
Well, like I said, I’m able to use my right hand real well, and you know, we’re. We just my trainer, and I just had his scale brought in from home, and it’s the Humi scale. And so on my phone, it shows me my composition of my my my body, right arm, left arm, torso, left leg, right leg, and you can see that the deficit is in my right leg. My right leg is four pounds of muscle lighter than my left leg. Wow. So you know, when I go to the gym, I try to only work my right leg.
Bud Beucher 1:10:37
So I’m trying, and I’m eating a ton of protein at the recommendation, suggestion of the VIV folks. And so that’s why I told you what my formula was in the morning. And I eat a lot of fish, and not so much red meat, but I eat red meat.
Bill Gasiamis 1:11:00
So the deficit in so you feel like the most results that you got from VIV was being able to develop your speech. Was it to bring you back online? Somehow that conversation that you were internalizing. How did it externalize? Like, why was it internalizing?
Bud Beucher 1:11:26
My personality just blossomed, and I don’t know why it did. Maybe it was Aviv, which I’d like to think it is. Maybe it’s guy, you know, I’m a church going Catholic, and we go every week, and you know, I’m so blessed. I’m so thankful to God. And, you know, I don’t know, yeah, maybe it’s, maybe it’s a combination of Aviv and God. Why not? Why not? Is right? What you know what? You can’t you can’t deny that my personality is much better. Now you didn’t know me before the stroke. Always thought I was pretty funny and, you know, gregarious, outgoing, never knew a stranger.
Post-Hyperbaric Oxygen Therapy Stroke Recovery Life and TravelBud Beucher 1:12:22
And you know, I went to the National Training Center, when I got out of the hospital for follow up work, and they were great people, too, but they didn’t have a hyper bear chamber. They had a gym, and they had physical therapists, they had speech therapists, they had occupational therapists, and I clept out immediately of occupational therapy, and, you know, about two weeks into it, I graduated out of speech therapy, so I was only left with P.
Bud Beucher 1:13:00
And it’s it was hard for me at the time to walk up and down the steps. Well, we took a 25 day cruise from Tampa to Alaska, and we virtually never used an elevator. We only walked up and down the stairs.
Bill Gasiamis 1:13:18
Yeah, that’s one of the things that I do. I have left side deficits, and my left side is probably weaker than my right side, and my left side, the muscle structure is probably smaller as well than it is on the right side. And when I go to a place that has sometimes you see stairs, and then you’ll see an escalator right next to it, just for people who can’t use the stairs. And even though it’s hard, I always use the stairs just so I can give my leg even more opportunity to remain remain capable of doing that function. How old are you? I am 51
Bud Beucher 1:14:02
You’re just a pop, yeah, I’m 68 and, you know, I’m really driven.
Bill Gasiamis 1:14:14
That helps. I know that being driven definitely helps. I wanted to also sort of ask you, I know that the deficit has left your muscle not as strong. So when I asked this question, I’m not necessarily talking about your guns or your or your legs or your muscles, do you feel stronger than before the stroke? Somehow? Do you feel kind of more.
Bud Beucher 1:14:41
No, I definitely not. You know, definitely not. But you know what? In comparison to when I was released from the hospital, I am so much stronger today. Yeah, I’m happy, but I’m not satisfied.
Bill Gasiamis 1:14:59
Yeah. It. So there’s more work to do.
Bud Beucher 1:15:02
Absolutely, you only have one of two choices, improvement or decline. There’s no such a thing as stabilizing, yeah, so it’s a conscious choice you make every day, when you go to bed, yeah, are you going to wake up tomorrow and decline? Are you going to wake up tomorrow and improve? Yeah, I choose to improve.
Bill Gasiamis 1:15:24
That’s a great choice. What does life look like now? What are your days look like now?
Bud Beucher 1:15:30
We’re traveling up a storm. You know, we’re absolutely enjoying our retirement. You know, I told you we went on a 25 day cruise back in April, and the day after we got back, I had hernia surgery. About eight or nine days later, we flew to Chicago, and then about two weeks after that, we went to Georgia for a week on a family reunion. And two weeks after that, we went back to Georgia, and we failed around with our my high school classmates, four of them and their spouses. And then about a month after that, we went to Colorado.
Bud Beucher 1:16:13
And we stayed with our we traveled with our daughter and the surgeon, her husband and their four kids and their nanny to Steamboat Springs, and then we came back from that, and we were back about five days. We went out to Seattle, and we went with on my fraternity reunion. We went Seattle, back to Seattle on a ship, but we went in four or five days early. We went to Vancouver, Victoria, and we flew on the seaplane. We just had a blast. And when we got back from that trip, let’s see.
Bud Beucher 1:16:56
We went down to Fort Lauderdale. Week before last, we went on the bright line train. We went to Pier 66 that’s the hotel that Nicholas is our oldest son’s company owns. And when I was a little boy growing up, we were snowbirds. So we spent six months in Illinois and six months in Fort Lauderdale, and we were on Isle of Bahia, and we literally watched the pier 66 be built. And so Nicholas’s company bought it. Maybe I’ll make this up six, eight years ago, and they’ve totally renovated it, they’ve changed it, they’ve put in condos. It’s just a fabulous hotel.
Bill Gasiamis 1:17:39
After listening to that story about your travel experience, so I feel like I need a vacation to get over everything I’ve just heard about.
Bud Beucher 1:17:50
Well, I’m not done yet, and I’m on a 23rd of October. We’re going for four nights after Chicago for my 50th high school reunion, and then we get back on the 26th or so of October, and then on the third of November, we’re going to fly out to Hawaii. Wow, we’re gonna take an intra Island cruise, and we’re gonna spend five nights on the front end of the cruise on wacky beach. And then we get back on the 16th, I think of November, and then, in theory, we’re done for that year.
Bud Beucher 1:18:27
But we’re going to watch our two grandchildren, our our youngest daughter and her husband are going out to Las Vegas, and then when they get back on Monday, then Monday night, we’re going to go down to our oldest son’s house, and we’re going to help their kids survive five nights without mom and dad. And mom and dad are going to England,
Bill Gasiamis 1:18:50
and you guys are going to be the full time carers of these children for five days.
Bud Beucher 1:18:55
Yeah. Grandkids are the best. If I knew grandkids were this good, I’d have skipped the child stage.
Bill Gasiamis 1:19:03
That’d be an interesting thing to see you do. That have been very interesting. Sounds like the mission has completely moved away from workaholic. Sounds like travel a Holic is the new addiction?
Bud Beucher 1:19:22
Yeah, well, I don’t know if it’s an addiction. My wife says I have a fear of missing out.
Bill Gasiamis 1:19:28
FOMO, yep.
Bud Beucher 1:19:29
Yeah. FOMO.
Bill Gasiamis 1:19:30
Yeah. Fair enough. That’s great, and especially, did that fear come about more so after the stroke, did you kind of get a bit of an understanding that perhaps we’re not here forever, and we need to squeeze some things in that we’ve been missing out on.
Bud Beucher 1:19:47
Yeah, we worked our fannies off, our whole lives, you know. And we sacrifice so much. Not just for our children, but the business. You know, for the first 10 or 15 years of our marriage, we only drove to Chicago and vacationed at my mom and dad’s house, or we drove to Texas and lived or went to Jane’s mom’s house, and we never had a vacation per se, if you will, outside of that two experiences, and the reason was financial and time.
Bill Gasiamis 1:20:31
Yeah, my gosh, I’ve just gone blank. Let me hang on a sec. I had the question.
Bud Beucher 1:20:43
Do you have brain drain image?
Bill Gasiamis 1:20:45
I don’t normally, I’m pretty good.
Bud Beucher 1:20:49
You’re having a senior moment. I am.
Bill Gasiamis 1:20:54
I was gosh, I was going to ask a question that was really relevant and I forgot. Doesn’t matter. Okay, so I Yes. Now I know what I was going to ask. I was going to ask about your overall general health and well being. How’s the blood pressure? Is that being managed? How is all the other little things that you took into stroke, into the days before stroke, with you? What is that like now?
Final Thoughts and AdviceBud Beucher 1:21:18
So when they sent me out of the hospital. I’ll make this up. I was on 13 different medications, and I’m off of virtually all of them, but Eliquis, which is the blood thinner I’ll be on that the rest of my life. Even though I’ve had two ablations, and knock on wood, I am not in AFib anymore, and I have a loop recorder in my chest. I’m verifying that with my cardiologist on a monthly basis, but I’ve had an episode of transient global amnesia. It took place at the over just before the Fourth of July, and I was at the gym, and then my wife came to the gym.
Bud Beucher 1:22:11
I don’t remember, and so it was probably the episode probably lasted, an hour and a half or so, and that’s medical speech for we don’t know what’s wrong with you. And her brother had that in Texas for six hours, and you know, he just can’t get it back. So they ran a whole battery of tests on me, and I spent two nights in the hospital just this July. And so the protocol when they release you from the hospital with that is they put you on a statin. So I’ve got to this last prescription, and I’m going to get off the statin.
Bill Gasiamis 1:22:57
Fair enough. What’s the thinking behind the statin? If somebody experiences global, transient amnesia.
Bud Beucher 1:23:07
Got me, you have to ask the medical guys, yeah, just their protocol.
Bill Gasiamis 1:23:14
Right, and it’s temporary. They put you on it for a period of time, and then you get off it.
Bud Beucher 1:23:18
Well, I want off of all my medications as much as I can. I’m I push the envelope all the time.
Bill Gasiamis 1:23:29
And anyone listening who wants off of their medication should only do that in conjunction with their absolutely professional do not just get off any medications on their initial no.
Bud Beucher 1:23:40
You need to consult your doctor, absolutely, but you have to advocate challenge. Why am I on this? Do I need to be on it? I’d like to get off of it. And whether it’s your urologist, your heart guy, or whatever.
Bill Gasiamis 1:23:59
Yeah, if there’ll be people listening to this that have just recently experienced a stroke. What would you like to say to people like that who are hoping to gain from listening to people share their story about the journey that they’ve had with stroke?
Bud Beucher 1:24:21
You know, I tried to, I tried to be as uplifting as I can. And so one of the things I always used was ants don’t give up, and neither do I. So when your listeners want to give up. Just say that to yourself. And the other uplifting statement I think I say is, I know I say it, but I think it’s uplifting. Is no hill for a mountain climber, and so you have to have. Mantras you have to motivate yourself. Nobody’s going to motivate you but yourself.
Bill Gasiamis 1:25:07
What surprised you most about yourself after this journey or during this journey.
Bud Beucher 1:25:15
How far I’ve come, how effective and successful I’ve been, how far I’ve improved, how much I’ve regained. I am, I am, I’m in awe.
Bill Gasiamis 1:25:32
And on that note, thank you so much for joining me on the podcast and sharing your story, Bud.
Bud Beucher 1:25:39
Bill, thank you for allowing me this opportunity to share my journey, and the journey wouldn’t be nearly as good without Aviv. Aviv has helped me get my life back.
Bill Gasiamis 1:25:52
Yeah, and also, thank you to Aviv for sponsoring the episode, being supportive of the podcast, and returning what’s and creating that full circle where I found that their interviews that I’ve done in the past have been amazing and really important to share that story about hyperbaric, and now that we’re sharing the patient’s journey with hyperbaric, I think that’s really important, like it adds another layer of information to what people might experience if they go down the path of hyperbaric or if they’re considering it.
Bill Gasiamis 1:26:31
I love the opportunity to receive some support for them financially, because then that means that I can pay for my internet, I can pay for the editing, I can pay for hosting, I can pay for all those things. It’s just brilliant, and I’m grateful to them, and I am forever grateful that there is I do this all the time. Whenever I meet people who work in hospitals, who research, who create facilities or whatever I’m always like, ever, forever grateful to people who I’ve never met, who are doing so much work to help people that that they will never meet.
Bill Gasiamis 1:27:14
Do you know like it’s such an interesting concept to be supported by people who have done all this work before we got to become stroke survivors, so that we can have the benefit of recovery. So I’m grateful for that. I’m grateful for the opportunity to talk to you. Thanks, Bud. What a powerful conversation with Bud and his mantra, ants, don’t give up, and neither do I. It’s something I hope stays with you long after this episode ends. If Bud’s story resonated with you, I’d love to hear about it. Leave a comment on YouTube.
Bill Gasiamis 1:27:45
Send me a message or share this episode with someone who needs to hear it. Thank you again to Aviv clinics for sponsoring this episode and supporting the work we do here at Recovery After Stroke, their commitment to helping stroke survivors through hyperbaric oxygen therapy and comprehensive rehabilitation is making a real difference in people’s lives. If you want to dive deeper into stroke recovery, check out my book at recoveryafterstroke.com/book, and if you’d like to support this podcast, visit patreon.com/recoveryafterstroke.
Bill Gasiamis 1:28:15
Remember, you’re not alone in this recovery journey, whether you’re one week post stroke or 10 years out, there’s always hope, always progress to be made, and always a community here waiting to support you until next time, keep moving forward. I’m Bill Gasiamis, and this is the Recovery After Stroke Podcast.
Intro 1:28:36
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Intro 1:29:06
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Intro 1:29:31
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Vivistim: One Stroke Survivor’s Experience – And Why Spasticity MattersWhen recovery gets complicated, honest stories help us navigate the grey. In this episode, John Cross shares his lived experience with Vivistim (paired VNS) and why a less-talked-about barrier, spasticity, shaped what he could (and couldn’t) do in therapy.
The Day Everything ChangedJohn’s story starts with something ordinary: a bad bout of COVID and relentless coughing. Soon after, he collapsed while getting ready for bed. He later learned he’d likely had a carotid artery dissection, a tear in the artery that can lead to stroke. The swelling in his brain was so severe he needed a decompressive craniectomy. Over a year later, he underwent cranioplasty to “put his head back together.” In between were weeks of hospitals, rehab transfers, infections, and a heavy protective helmet that strained his neck.
Life After Stroke: Identity Shifts and Small WinsBefore stroke, John worked long days as a mechanical designer and application engineer problem-solving was his world. After stroke, everything changed: left-sided weakness, hypersensitivity, time distortion, and the emotional rollercoaster many survivors know well. Work disappeared after a corporate acquisition; insurance hurdles stacked up. Still, he kept searching for options: hyperbaric oxygen, medications, and eventually Vivistim.
What Vivistim Is (and Isn’t)This isn’t medical advice or a recommendation; it’s John’s account. Vivistim is a paired vagus nerve stimulation device: a small implant connected to the vagus nerve. The core idea is timing brief stimulation while you perform a task, to help the brain strengthen relevant neural pathways. John’s sessions included therapist activation and a magnet he could use himself. He didn’t always feel the “throat tickle” many describe. One day, he surprised himself by pinching a Post-it between thumb and finger, tiny, yes, but meaningful.
The Spasticity FactorHere’s the critical insight from John’s story: spasticity can limit functional gains.
He describes his left arm as “locked up” so tight that even in zero-gravity setups, he felt like he was fighting a 15-pound weight. Without the ability to move the limb through useful ranges, pairing stimulation with specific movements was harder. He explored options like Botox (costly with his insurance) and became curious about longer-lasting approaches like cryo-neurolysis still hard to access in his region.
This doesn’t mean Vivistim can’t help someone with spasticity; it means spasticity may need its own plan so therapy, any therapy, has room to work.
The Emotional Load No One Warned Us AboutJohn speaks candidly about fear, clinginess, and anger outbursts that felt out of character. He wished someone had prepared him for the emotional and cognitive shifts after discharge. In my experience, that gap is common. Hospital teams do an incredible job stabilizing people, but the “what now?” conversation often happens elsewhere, and often too late.
If that’s you: you’re not broken and you’re not alone. Emotional changes can be part of brain injury, not a moral failure. Support (counselling, peer groups, community) helps.
Advocacy, Patience, and the Power of CommunityJohn’s engineering mindset both helped and hurt. He wanted to “solve” recovery quickly until he realized recovery demands experiments, patience, and feedback. He kept reaching out, kept learning, and kept trying. That’s hero work.
“Small wins count. Pinching a Post-it mattered because it meant my brain could still learn.”
—John Cross
Practical Takeaways (Not Medical Advice) If spasticity is a roadblock, make it a priority topic with your clinicians. Strength, range, and fine control often need spasticity addressed first. * Pair therapy with purpose. Whether you use a device or not, rehearsing goal-based movements with repetition is powerful. * Track tiny wins. A weekly note of “what moved, what felt different” builds momentum. * Get emotional support. Recovery is physical, mental, and emotional. Consider a psychologist or peer group. * Be your own advocate.* Ask questions, seek options, and document outcomes.
If you want a lived-experience roadmap for the long haul, my book might help:
The Unexpected Way That a Stroke Became the Best Thing That Happened
And if this show supports you, consider joining the community:
Patreon.com/recoveryafterstroke
“Spasticity doesn’t mean progress is impossible. It means the plan needs adjusting.”
SponsorA thank you to Banksia Tech, distributors of the Hanson rehab glove by Syrebo, designed to help stroke survivors work on hand function at home, whether you’re early in recovery or years in. You’ll hear more during the episode.
Final ThoughtJohn’s story isn’t about a miracle device. It’s about nuance: understanding that tools, timing, spasticity, emotions, and support all intertwine. Recovery isn’t linear, but small, honest wins stack up.
Disclaimer:
This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
John Cross on Spasticity, Vivistim, and Finding Small Wins After StrokeJohn shares his Vivistim experience and how spasticity shaped rehab, an honest look at small wins, setbacks, and hope in stroke recovery.
Highlights:
00:00 John Cross’s Background and Initial Stroke Experience
05:03 Jon Cross: The Night Everything Changed
16:48 Hospital Stay and Initial Diagnosis
18:27 Rehabilitation and Vagus Nerve Stimulation (VNS)
21:21 Jon Cross: Rewiring Recovery with Vivistim
35:29 Small Wins and Hope with the Vivistim Journey
49:23 Emotional and Psychological Impact
52:08 Adapting to Life Post-Stroke
54:42 Support Systems and Future Goals
Transcript:
John Cross’s Background and Initial Stroke Experience
Bill Gasiamis 0:00
Before we jump into today’s conversation, I want to take a moment to thank everyone who contributes to making this show possible. My Patreon supporters, YouTube commenters, Apple podcast reviewers, and everyone who’s brought my book The Unexpected Way That A Stroke Became The Best Thing That Happened, after doing this for more than 10 years on my own.
Bill Gasiamis 0:20
Your support now helps me create this content for other survivors who need hope, inspiration and real world insight into life after stroke and a special thank you to Banksia tech, proud distributors of the Hanson rehab glove by cerebo, designed to help stroke survivors improve hand function at home, whether you’re early in recovery or years down the track, and I’ll tell you more about them later in the episode. Today’s guest is John Cross, and he’s got a fascinating story to share. John experienced a carotid artery dissection that led to a major stroke and required a craniotomy.
Bill Gasiamis 0:58
He’s now living with a vivistam implant, a Vagus Nerve Stimulation device, and he talks candidly about what it’s really like, how it works during rehab, and the challenges that spasticity still brings. This is not medical advice or a product endorsement. It’s one man’s lived experience, and the reminder the recovery is rarely linear. Let’s dive in. John Cross. Welcome to the podcast. Thank you. Give me a bit of a rundown about what John Cross used to get up to before the stroke.
Jon Cross 1:34
I went to work every day, 1214, hours a day. Difficult work. Worked as much as I could. I enjoyed my job, and unfortunately, since the stroke work, decided they didn’t need me anymore, so I don’t do it anymore.
Bill Gasiamis 1:53
What kind of work did you do, John?
Jon Cross 1:57
Well, the bulk of it was a mechanical designer with AutoCAD. But they my title was, they called us in a sales Application Engineer, which I’ve always likened to Inside Sales Support. Really, they just like to put a big, fancy title on it.
Bill Gasiamis 2:16
Sales Support, yep.
Jon Cross 2:21
So I’ve for 30 years, I’ve designed clean rooms, like for pharmaceutical and high tech stuff.
Bill Gasiamis 2:32
Rooms where there’s no or small chance of cross contamination or something like that.
Jon Cross 2:39
Exactly.
Bill Gasiamis 2:42
And what about family life? What was that like? What was your situation?
Jon Cross 2:47
My family’s awesome. I wouldn’t be here without them. So I’ve got boy and a girl, both adults and my wonderful wife.
Bill Gasiamis 2:59
So 14 – 15, hours. Was that just part of what was required, what was necessary? Or is that because you loved job so much.
Jon Cross 3:09
A combination, and just couldn’t get it all done because I covered multiple bases where the bulk of my job was to put a, I don’t know if everybody understands what a submittal package is, but in a quick definition, it’s gather all the information from the customer and repackage it so that they understand that you know what they want, and this is what they were going to give.
Bill Gasiamis 3:39
And what did you do? Go ahead, and then you would.
Jon Cross 3:42
Sorry, no. Then I also designed the product too, so I covered multiple bases, but downtime, I kept the family cars going and just tinkered around the garage.
Bill Gasiamis 3:59
And what were you focused on, anything in particular back then? Was there anything that you were sort of straight, aiming towards or striving for.
Jon Cross 4:10
Just basic life stuff, you know, provide for the family? And unfortunately, that was right at the height of covid, and that’s what nailed me.
Bill Gasiamis 4:21
I see what was the sense that you had about your health? Did you feel like you were in a in a good way physically?
Jon Cross 4:29
Well, I knew I could be better, but it wasn’t terrible, like I could run up a flight of stairs and not be winded, but it couldn’t ride my bike up a hill and do it very well. So any other is room for improvement.
Bill Gasiamis 4:53
And how old were you about the time?
Jon Cross 4:55
My stroke was? I was 57.
The Night Everything ChangedBill Gasiamis 5:03
And now, do you have a sense of what happened on the day? Do you have a recollection of how your day started and what evolved?
Jon Cross 5:14
My day was normal. I mean, I had covid, cold, really bad, and probably shouldn’t have gone to work, but I did, and just kept the old mask on and worked through my day. Got home, and normal for me was to come home exhausted and just crash on the couch until bedtime came. Thankfully, I woke up enough to get myself up to bed, and I went in to get ready for bed, and short story is I collapsed in the closet where I would get ready for bed. Thankfully, my wife heard me struggling to get back up, and she knew exactly what happened, and called the ambulance right away.
Bill Gasiamis 6:02
So what did you notice? What did you feel? How? How did things change for you? Before you knew there was something going on?
Jon Cross 6:10
Well, I was trying to get my pants off and get ready for bed, and I have a weird belt, and I couldn’t get the belt under undone enough because it was a ratchet type of belt, and I didn’t know it at time, but now it makes sense, my left hand quit working, and I couldn’t release the bill to get my pants off, so I leaned up against the wall, and before I knew it, I was on the floor.
Bill Gasiamis 6:40
Was there any other than having covid? Was there any other sort of suggestion, now, looking back, that there was something going wrong, that perhaps was a red flag.
Jon Cross 6:54
Well, now I know I explained to the doctor, you know, I had an earache and see my carotid already dissected. And he said the earache that I thought I was having was actually my carotid artery starting to go.
Bill Gasiamis 7:15
I’ve had some people who join me on the podcast with carotid artery dissections. Often there’s a trauma that’s related to it. They’ve been hit, or they were in a collision in a vehicle, or something happened that made their carotid artery dissect. Did you have anything like that? Any blunt force trauma or anything?
Jon Cross 7:35
No, the doctor said it was just my coughing so hard all the time.
Bill Gasiamis 7:40
Wow, from the covid, yep, wow. And does that, was it that hard the coughing? Was it that hard that you felt to it was worse than ever, or was it really, really difficult to cough? How was it that bad?
Jon Cross 8:00
Yeah, I just had a lot of stuff in my throat trying to cough it up, and the constant tickle, trying to get rid of the tickle, and it was, was there’s nothing now looking back this, I should have noticed that.
Bill Gasiamis 8:19
But no, you wouldn’t. How would you have possibly known that?
Jon Cross 8:24
Coughing? Yeah, not now. I would in the future.
Bill Gasiamis 8:29
Yeah, that’s another very strange way to discover that somebody has had a stroke. I’ve had all sorts of different ways. People have been bitten by a dog that caused a stroke. People have hit themselves in the neck and caused a stroke. People have sneezed and caused a stroke. All of those types of things are just so strange and bizarre that it could those seemingly benign events could lead to a stroke.
Jon Cross 8:59
Yeah, and I sneeze very hard. My family’s always proved me about it. And I told the doctor when I was in rehab, I’m afraid to sneeze. And she said, Don’t be afraid to sneeze. Like, well, Doc, you didn’t have a stroke.
Bill Gasiamis 9:17
Yeah, from coughing as well. And did they connect the dots quite quickly? Did they work it out early, or was that something that you kind of connected the dots on a little later?
Jon Cross 9:31
No, I think with their help, it all kind of came together once, you know, I was in the process of not dying, if you will. They had, I had a, I can’t remember his craniotomy or craniectomy, where they take your skull flap off, yep. Can’t keep them straight. Which one’s which, yep. So as recovering from that procedure, when the doctor was talking to me, I told him that I had covid weeks before, and he said “Oh, covid, stroke.” And then I described. Pain. Okay, that’s what happened. And described it because they had the typical questions, did you see a chiropractor? Nope.
Bill Gasiamis 10:12
Tell me about the craniotomy. Why did you have a craniotomy?
Jon Cross 10:18
Just to release the pressure? I actually told the my told my wife I was gonna die because my had so much pressure in my head.
Bill Gasiamis 10:32
And the pressure is that as a result of the dissection, and what happened to to your head after the dissection?
Jon Cross 10:41
Yeah, well, it was from the dissection, yes. And really, they didn’t do anything besides just stare at me and see if I died or not. They didn’t fix my artery. I guess I never talked to him, but they didn’t. I figured they put a stint in, and they didn’t, so they just let my body heal. And the taking the skull flap out gave my brain enough place to swell.
Bill Gasiamis 11:11
So how big? How big was the flap? Was it a large portion of the skull that was removed? Sometimes people have pretty much half their skull removed. What what forms like for you. We’ll be back with more of John’s story in just a moment, including what he’s been learning about patience, spasticity and tiny wins that make a difference. But first, a quick thank you to Banksia tech for supporting this episode. They’re the Australian distributors of the Hanson rehab glove by Cerebro, which helps stroke survivors regain hand function from home.
Bill Gasiamis 11:48
It’s a beautifully simple idea, assistive movement that helps the brain relearn. You can learn more and order directly through Banksia tech.com.au, the links will be in the description, and they also ship internationally. And if this show has helped you in your recovery, please consider supporting my mission over on patreon.com/recoveryafterstroke. Your support helps me keep producing these conversations and sharing hope with people who need it most.
Jon Cross 12:19
I’d say it was about the size of my hand. Okay, I have a picture of the prosthetic they put back in place because the actual piece of bone got infected. It couldn’t put it back in.
Bill Gasiamis 12:32
Okay, well, that’d be something that we I’d love to see personally, if you don’t mind sharing it. And then we could put it on the show notes, and people can have a look at it.
Jon Cross 12:42
I’ll shoot you an email of it. I have a funny story for that. Tell me so if you don’t mind taking the time for it, not at all. Part of what I did was design surgical suites. So the company that we were working for at the time, actually made the product that’s in my head. And my boss was joking with me, said, we’re going to imprint the company logo in your prosthetic. It’s like, yeah, I don’t care. Just give it for me.
Bill Gasiamis 13:16
That’s hilarious. You don’t do you have the company logo imprinted on it now.
Jon Cross 13:20
it’s not no and I’m grateful. Since they got rid of me, I wouldn’t want to be advertising that.
Bill Gasiamis 13:26
Fair enough. I couldn’t agree more. They got rid of you. They had to get rid of you because you were taking too long to get back to work. You weren’t being productive. Was it? What was the situation there? Do you feel? Well?
Jon Cross 13:45
Company I worked for had been sold to a big conglomeration just a couple months prior to my stroke, and I got back to work. I’m not exactly sure the timing, because time is not something I’ve been able to master very well now, and I was working from home quite well. There wasn’t a whole bunch of work to do. And anyway, my recovery slowed down. I hit the old plateau, if you will, and we had found clinical trials down in Houston.
Jon Cross 14:27
So I talked to my boss and said we wanted to move to Texas so I could get into the clinical trials. And I work remote. And he gave the Okay. And literally, two weeks before moving day, HR calls and said, we’ve been talking and we’re kind of slow, so we’re going to move you over to contract work, give you work as we need it. And few months went by and could never get any work out of them, so they just you. Kind of phased me out.
Bill Gasiamis 15:01
I say I understand. So on the on the day of the stroke, your wife realized there was something wrong, she called the hospital, or she called the ambulance, I imagine the paramedics.
Jon Cross 15:15
Yep, yeah.
Bill Gasiamis 15:17
Were you aware of that whole process? Very clearly, you do. You do remember it? Tell me. Take me through that day. What was it like when you realized that something serious was happening? How did you feel about it? And what were you thinking?
Jon Cross 15:30
Well, I didn’t put it together. I just knew I was on the floor and I couldn’t get up, and I’m laughing in my head. I was laughing at myself because at the time, my left hand was working enough that I could reach out, and there’s a laundry basket beside me, and I was trying to hook the laundry laundry basket with my fingers to help lift myself up. And I thought, that’s not going to work. Laundry baskets not heavy enough to pull on. So my wife heard me and came in, and I was just trying to wave her off so no, just call my son and help me get up.
Jon Cross 16:04
I’ll be fine, because I didn’t realize the headache at the time. But I know, you know I felt the ride down the stairs. You know they have the gurneys that walk down the stairs now, and I knew exactly what was going on. I had a pocket knife in my pocket at the time, and I knew I was going to hospital, so I was trying to get out of my pocket to give my wife and she could see what I was doing, and she said I already got it, hon. But later it dawned on me, I couldn’t move my right arm because the gurney had me strapped in.
Hospital Stay and Initial DiagnosisBill Gasiamis 16:48
To take you down the stairs to make sure you don’t fall out. Yep, yeah, and then you ended up in hospital. How long were you in hospital for?
Jon Cross 16:58
You know what I’m I actually asked my wife the other day how long, and the best we can figures, has maybe roughly five weeks before they sent me over to what they call a transitional care facility that was supposed to give me rehab, but they sent me over with a bladder infection, and my blood pressure went crazy every time I tried to rehab, so that didn’t go very smooth.
Bill Gasiamis 17:25
So as a result of that, you didn’t have rehab, or was it a different something else happening while you’re a rehab, a different medical issue.
Jon Cross 17:38
Eventually, I wound up back at the hospital at what they call inpatient rehab. And that was okay, and that lasted for, you know, about a month and a half, I suppose. And then I got back home, and we continued to wait for the swelling to go down in my head before they put my head back together.
Bill Gasiamis 18:06
And then they put your head back together, a little while later.
Jon Cross 18:10
So my stroke was in June. I got my head put back together. June of 22 this is where I have trouble with time, because I got my head put back together in September of 23rd.
Rehabilitation and Vagus Nerve Stimulation (VNS)Bill Gasiamis 18:27
Okay, so quite a while later, over a year.
Jon Cross 18:31
Yeah, which blows me away, because it felt like it was just a matter of a couple of months.
Bill Gasiamis 18:39
And in that time, are you wearing one of those protective helmets or hats or something over your head to ensure your brand is kept safe?
Jon Cross 18:47
Did the big, heavy monstrosity make it sweat all the time and hurt my neck because it was so heavy.
Bill Gasiamis 18:57
And in that time, are you? Are you feeling okay with everything, or are you experiencing deficits and you have challenges to deal with? So it sounds like your left hand doesn’t work. What about your left leg?
Jon Cross 19:12
Well, I eventually managed to walk after I got home, and my wife helped me, and I got walking figured out, but I still have to wear the AFO never really got the arm to work, but deficit wise, it was the left arm, left leg and hypersensitivity were boy when they Were trying to wake me up from the initial craniotomy, they did the finger pinch in the cuticle, and it literally felt like I was being electrocuted.
Bill Gasiamis 19:54
Yeah, hypersensitivity on their left side.
Jon Cross 19:58
Yeah. Did not like that, it whatsoever.
Bill Gasiamis 20:01
Yeah, and then the rest of your skin as well. Is it just your fingers, or is it the rest of your skin as well? The heart, the entire left side,
Jon Cross 20:12
It’s a lot of the skin, not everything, but I still have some sensation issues, but I can tell hot water that’s easy.
Bill Gasiamis 20:29
And as far as the arm work movement goes, does the arm move up and down, or is the arm also not moving too much?
Jon Cross 20:39
I’m basically, I don’t move from the elbow down. I got a little bit of shoulder movement, and I can move my fingers just a slight bit, not as much as my right side at all, but I got some movement into the thumb now.
Bill Gasiamis 20:54
So you’re still seeing a slight improvement over the last period of time.
Jon Cross 21:00
Yeah, actually, this last year, I got the Vivistim implant, so that might be helping some, but gotta get back. I’m gonna get into physical therapy again here in another couple of weeks and get some use of the Vivistim unit.
Jon Cross: Rewiring Recovery with VivistimBill Gasiamis 21:21
Tell me about the Vivistim unit, because there isn’t a lot of people who have been able to access it, A and B. Provide feedback to other people about what it’s like. There seems to be a very a bit of a black hole of information around it. What, what was it like for you to get the device installed. How do you go about that? How easy or hard was that?
Jon Cross 21:48
Well past the insurance it was a piece of cake that unfortunately, I have a shunt because of the excess pressure in my head. So I’ve got a drain line on the left side, where they normally put the biggest immunity on the left side. So I found a doctor that could put it on the right side, and then he tunneled across my neck to put the coil on the left vagus nerve. But if I could let anybody know, make sure you get your spasticity taken care of, because that was a big limiter on me and getting my arm working.
Bill Gasiamis 22:27
What’s the Vivistim meant to do? How is it supposed to help?
Jon Cross 22:32
Well, I like to say it’s kind of a slap in your in the back of the head, saying, Get your butt back to work so it stimulates the brain to generate new neural connections, and you’re supposed to stimulate it while you’re doing a task. So the brain makes that connection. It’s like, we do this. We make that connection.
Bill Gasiamis 22:58
And you stimulate it. How? How does the stim the Vivistem do that? Do you know?
Jon Cross 23:04
Well, the therapists have a way to do it with their computer and a remote, and then I have a magnet that I can turn it on with. Okay?
Bill Gasiamis 23:13
And what does it feel like when you turn it on? How does it feel?
Jon Cross 23:17
Well, they say I should feel a tickle in your back, your throat like you need to cough, but I’ve never felt anything. Nobody said, why? I don’t just that’s just the way some people are.
Bill Gasiamis 23:33
So you activate it, and then while you’ve activated it, you’re supposed to be doing some kind of a physical activity, an exercise, a movement, a rehabilitation type of correct and then, does it? Does it generate electrical pulses, stimulation? What kind of feedback does it give the vagus nerve?
Jon Cross 24:00
Well, if I remember right, it’s just, you know, they’re talking milliamps of current. It’s like just a very, very short duration of time, like every five seconds, and only lasts for about 30 minutes.
Bill Gasiamis 24:21
And then you have to switch it off. Or does it have a set amount of time that it works for?
Jon Cross 24:29
It has a set amount of time?
Bill Gasiamis 24:33
Do you know why that is?
Jon Cross 24:36
That’s just what they determined that is best for rehab. So you’re supposed to have, and I had six weeks of therapy right afterwards, so you’re supposed to have, you know that how they say you have X number of movements to make to ingrain stuff back into your brain.
Jon Cross 24:59
So you’re. Trying to amplify that time. Repetitions is word I was looking for.
Bill Gasiamis 25:07
Okay, and how big is the device?
Jon Cross 25:12
It’s a large matchbox, basically.
Bill Gasiamis 25:18
And does it sit under your under your skin, somewhere?
Jon Cross 25:21
Yeah. How long you can see I got a small, low scar right there, yep, but I can definitely feel it. It’s right there.
Bill Gasiamis 25:34
And then, does it have a battery? How long does it last? Do you know.
Jon Cross 25:38
They say it lasts up to seven years.
Bill Gasiamis 25:42
Okay, so you got through all of the drama with the insurance company? Was that quite a drama?
Jon Cross 25:52
I’d have to look back at records, but they said when I went into the doctor, okay, the lady that does all the paper potion said it can be like, three to six months to get the approval. And Ryan came back in, gosh, I forget it was like, oh boy. I maybe 30 weeks, I think so, substantially shorter than what they had experienced with the insurance companies.
Bill Gasiamis 26:31
Okay, and now that it’s in your The idea is that you go and get more rehabilitation, or do you also use it and activate it at home? Is that whole idea that you can switch it on and off whenever you feel like, whenever you’re being more active, or whether you’re doing a home rehab?
Jon Cross 26:55
Well, I had one therapist say, anytime I’m like, even going out to the car or going to the store or whatever, turn it on. But I need to clarify that, because that’s not using, you know, my bad side. I’m not doing anything specific to the arm that’s affected. So I want to clarify that. But the idea is that I do therapy, either with a therapist, or I do at home too, anytime, like showering and stuff, I can turn it on.
Bill Gasiamis 27:34
And the Vivistim basically sits there. It doesn’t pulse or doesn’t do anything. When it’s switched off, you don’t feel other than feeling it under your skin. You don’t hear it. It doesn’t make a noise or anything like that, nothing.
Jon Cross 27:51
Hey, the only time a guy notices when the cat walks across me, hell just because she steps on it feels like a bruise.
Bill Gasiamis 28:03
Okay, how long have you had it installed?
Jon Cross 28:08
I shoot. I thought about this yesterday. I should have nailed it down. But April of 25 okay?
Bill Gasiamis 28:18
April, May, June, July, August. So it’s been in there for about four months. Yep, okay. And have you had a lot of time activating it, switching it on and off? Have you been able to utilize it?
Jon Cross 28:36
Yeah, definitely. And I know it’s been a couple of months ago now, but I was able to not going to seem like a big deal because I have a little bit of movement in my other in my bad hand, like I was able to grasp a piece of like a Post It note in between my thumb and index finger with the bad end. So that was encouraging.
Bill Gasiamis 29:07
The vivistim organization, the people who create the product, supply the product, and then your doctors are there follow ups. Do they communicate with you? Do they see how you’re going? Do they check in with you?
Jon Cross 29:24
I had to have a follow up visit. Boy, I think it was a month after it actually got implanted, just to make sure that things look good and they could take the band aids off and all that.
Bill Gasiamis 29:38
And that was about it.
Jon Cross 29:41
That was about it. I mean, the therapist check and make sure that everything looks good. When they activate it, they can actually do readings and see that the connections are all there.
Bill Gasiamis 29:56
So there is a way to connect into it, get a read. An I imagine, on a computer, or some sort of an app or something.
Jon Cross 30:03
Yep, exactly.
Bill Gasiamis 30:06
So they have some data. I’m sorry, I have some data that they can look at.
Jon Cross 30:13
Yeah, I was hoping that they it recorded and they could look back at the recordings, but it doesn’t do that. So it’s just live data that they see.
Bill Gasiamis 30:25
I see, and then first you have to get the Vivistim. You have to get the insurer to approve it. Then it has to get installed. Then I imagine you have to find a therapist that is that knows about the technology and knows how to get the most of it, I would, I would imagine, is that the case, or is that not happening?
Jon Cross 30:55
Well, I have a business in rep, rep, excuse me, in the area, and she’s working on getting training into the local hospital here. So I have offered to be the guinea pig for the hospital to get trained up on so we’ll see if they take me up on it.
Bill Gasiamis 31:14
Yeah, fair enough. How did you find out about the Vivistim.
Jon Cross 31:20
I found out about this 10 years ago, when we were still, you know, I still in my initial rehab, because ever since I got home, that’s all I’ve done is research how I can get better. So I’ve done hyperbaric I even tried ketamine, and that was not good.
Bill Gasiamis 31:43
Okay, tell me about the ketamine experience. Why did you try that?
Jon Cross 31:49
Well, I understood, you know, the brain produces that BDNF protein to help reduce, rejuvenate things, and that’s what I focus on a lot is brain derived.
Bill Gasiamis 32:03
Yeah, brain derived neurotropic factor?
Jon Cross 32:06
Yep, so I thought, What the heck? Let’s go ahead and try ketamine. And this is a guy who didn’t do anything in high school, right? So thankfully, my wife stayed with me, because, as a I’ll say it was a bad trip, because I don’t know what a good trip would be.
Bill Gasiamis 32:24
Yeah. Okay, so your first experience with substances that you most of the time should be avoiding was after a stroke, correct? Well, the about that’s probably about it. We’re not gonna talk about it any more than that. We’ll just leave it at that. It’s not a good thing. You didn’t, you don’t you don’t suggest people should go down that path, I imagine.
Jon Cross 32:51
Well, it depends on your personality and your ability to handle being wigged out. But there’s a new Algernon is the company they are working on a product called a DMT that is a synthetic version of something your body can produce, which is a natural hallucinogen that can achieve similar results, ketamine, without getting you so messed up. I have an appointment with my new doctor just in another week or so. Want to talk to him about the possibility of being able to use it give that a show up.
Bill Gasiamis 33:37
I see understand. So the idea is to activate more of the brain. Isn’t that the idea with ketamine and psycho psychoactive drugs?
Jon Cross 33:51
Yes, good way to put it.
Bill Gasiamis 33:54
And then hopefully you activate parts of the brain that perhaps may have been dormant or support the ones that are dormant to come online, and then, as a result, potentially gain some function.
Jon Cross 34:09
Yeah, even if it’s as much as little, as getting the Good half to take over.
Bill Gasiamis 34:16
Yeah, understood. So you’re you your What were we talking about before? Before we spoke about ketamine.
Jon Cross 34:28
You were on the river STEM.
Bill Gasiamis 34:30
We were talking about vivistim, people are getting trained up in your local area by the river stim. Rep, to support hospitals. I imagine doctors there to work with the product, to make the most of the product. You had it installed by the team that installed it. Are they? Vivistim, people? Are they doctors? Who are they? Who installs it?
Jon Cross 35:01
Just a neurosurgeon did it, and he’s trained up by vivistim. So once you have it installed, you don’t have to necessarily be at a clinic that knows about vivistim, because you can activate it yourself any physical therapy is good for you. Just get your repetitions in. Just need to do them the right way.
Small Wins and Hope with the Vivistim JourneyBill Gasiamis 35:29
And is the idea to have it in stored for the entire seven years, permanently after that?
Jon Cross 35:34
Or, you know, I never thought to ask about removal. If that’s an option or not, but as far as I know, it just stays there. It’s kind of like a pacemaker, but it’s a pacemaker for your brain.
Bill Gasiamis 35:50
Understood. Okay, wow. What an interesting experience that is to go through all of that. Hopefully it gets some it gets some stuff happening on your arm and on your left side there, and improves things for you. Have you, have you had some changes that you associate to the Vivistim that you can say, perhaps it’s as a result of the device.
Jon Cross 36:18
Now, not necessarily, but grabbing that post it note, had never been able to do such a thing. But like I said, I have a little bit of movement like this with the bad hand, so I just when she gave it to me, I tried harder to actually grab a hold of it. So might have just been the encouragement. Let’s go ahead and try this now.
Bill Gasiamis 36:41
Yeah.
Jon Cross 36:44
The big thing I want to be able to do is something silly is just scratch my nose.
Bill Gasiamis 36:50
With your other hand.
Jon Cross 36:52
Yeah, because right now I have to pick my hand up if I want to do anything.
Bill Gasiamis 36:57
Yeah. Understood. Well, I hope you get there, mate, I really, really hope you do.
Jon Cross 37:04
I appreciate that, and I’ll give you any positive updates. But making the move back to Oregon has been great because I got connected with a lot of people here. That’s encouraging.
Bill Gasiamis 37:20
You seem very mild minute.
Jon Cross 37:24
Thanks. But going from what I considered marginal rehab initially, to down to Texas for the clinical trials, and then, basically, the day we got moved into the house, I called to tell the university I was there, and then they did the evaluation over the phone. Kind of had the shunt and I got disqualified. So that was a big letdown. Been a lot of ups and downs.
Jon Cross 37:58
That’s one big thing, is dealing with ups and downs, you know, obviously there’s emotional roller coaster anyway, but then throw in these hurdles you didn’t think about, you know, your job letting you go, and losing your insurance and the ability to get back to hospitals and stuff is it’s a big, you know, punch in the gut.
Bill Gasiamis 38:19
Yeah, that’s what I was sort of suggest going to ask you about. You seem very mild mannered, and you don’t seem very easily rattled. However, you’re going through all the emotional turmoil, the physical turmoil, I imagine there’s some mental challenge there as well. You know, trying to get wrap, wrap your head, around all of the stuff that you have to deal with all of a sudden that you’ve never had to deal with before.
Bill Gasiamis 38:47
What’s the hardest part for you of that? Is it something specific that you you hadn’t had to deal with before? And I’m not talking about the physical condition, but is there something specific that came up that was the most challenging for you to grapple with.
Jon Cross 39:05
Well, the biggest thing, I think, was emotionally, you know, I always felt my poor wife has just been through it, you know, because I was basically a little kid again, as far as being clingy and needy. I didn’t want to be left alone.
Bill Gasiamis 39:26
Through fear?
Jon Cross 39:28
Yeah.
Bill Gasiamis 39:31
That something might happen again.
Jon Cross 39:35
Well, I’ve learned to understand that it’s, you know, not real. It’s just my brain, you know, since there’s so much of it missing and it’s just messing with my ability to reason.
Bill Gasiamis 39:51
Okay, so that’s a really great distinction. So it’s, it’s beyond just irrational fear or even rational fear. It’s beyond. I had a stroke. I might have another one. I need somebody around with me all the time. It’s also, you understand that it’s also the injury actually in your brain that perhaps could be running these types of feelings.
Jon Cross 40:17
Yes, definitely. And I wish that they offered, you know, I mean, usually people don’t really like the idea of the doctor offering you to talk to a psychologist, but that would have been great to have somebody specific that could have helped you understand that this is going to happen be ready for it.
Bill Gasiamis 40:39
Yeah, there isn’t much conversation after that initial intervention to make people feel ready to go home, so to speak, or not not feel ready to just send people home. There is no you had a stroke. What now? Conversation? Ever anywhere that I’ve heard of, nobody that I’ve spoken to has ever said that there was a conversation that gave them some understanding of what to expect.
Bill Gasiamis 41:11
And I find that really fascinating and challenging. And at the same time, I think it’s kind of what we do here on the podcast, is we, I think we feel that gap. People seem to tune in to get a handle on how other people are going about their recovery, and what kind of and how they and how they’re forging, you know, their path forward.
Jon Cross 41:38
Yeah, that’s one of my, you know, hopes that I can help people understand better, maybe even if it’s the doctors. Hey, you know, the patients need this kind of support afterwards. But you know, I’m not medically educated, so you’re going to listen to me?
Bill Gasiamis 42:03
Yeah, I’m not sure that there’s much. I’m not sure that there is a lot of conversation between patients and their doctors. The doctors tend to need to move patients on. They tend to get you to a state where they can send you off to make the space available for somebody else, rather than have you come back provide them with feedback, perhaps on your experience, their customer service, the tools that they offered You, the support that they gave you.
Jon Cross 42:42
Sorry, I’m trying to ask my wife to move out because the bag is noisy, but yeah, I think that’s I really want to try to help people in the future learn to cope with the stuff I got connected with a Stroke Awareness Oregon, and lady that’s headed and out of so she, she follows you a lot. Hopefully I can get myself better enough that I can go in and offer some assistance in there.
Bill Gasiamis 43:17
Yeah, it is the communities. The one of the best things that I find is the amount of people that connect, find each other through the podcast, and help each other to solve problems, big or small, I found that that’s probably the most rewarding part of doing this podcast, which I didn’t expect. I didn’t know that that was going to be a thing. And the conversation that you and I just had about Vivistim, that is one that I’ve been trying to do for a long time.
Bill Gasiamis 43:52
I haven’t had any luck finding people yet, drug survivors, sending me information and saying, do you know about the Vivisteam? Have you seen anyone who used it?
Jon Cross 44:06
I like to say, I’m an open book. If somebody’s got questions, send them on and I’ll do what I can to answer. But I have to say, give your spasticity taken care of before you go through the effort of getting the unit, because that was a big limiter for me.
Bill Gasiamis 44:22
How so tell me about that?
Jon Cross 44:25
Well, I even just moving my arm. It’s so locked up I can’t physically move it with the other arm, so there’s no way I can overcome my own muscles with the unit turned on. You know, they try to put you into a zero gravity position to move your limb. I feel like I’m fighting, you know, a 15 pound weight all the time when I move my arm.
Bill Gasiamis 44:55
So the spasticity kind of is, is a hurdle to what. Getting the most out of the Vivistim.
Jon Cross 45:04
Yeah, unfortunately, Botox, with the insurance that I had, was just out of sight for us.
Bill Gasiamis 45:15
As far as the cost, covering the cost and having the injections paid, covered, yeah, right, yep. And then there’s another, there’s another procedure that people are talking about at the moment, which I spoke about on the podcast a little while ago in a short one of my short videos, which was about a cryoneurolysis, or cryonerolysis.
Jon Cross 45:42
Yes. I can’t remember his name. Is it William, I think, but I have emailed with him and was trying to find a location that I could get to to get that but unfortunately, there’s no crowd trained doctors on the West Coast.
Bill Gasiamis 45:58
I think they’re running courses that they’re trying to recruit people to go and attend the courses to learn how to administer the procedure. And the doctor’s name was Paul Winston, okay.
Jon Cross 46:14
Well, thank you, Paula, and I’ve got an email from him. I gotta look that up and try to get my new doctors here to consider it.
Bill Gasiamis 46:22
Yeah, so hopefully, if and what they say about cry neurolysis Is that what you get is a long term positive result from it, unlike Botox, which is quite short term, there seems to be, for some people, quite a long term improvement in the way that the specificity feels, and it could last for some people up to a year or more. Which is I think Botox doesn’t have that type of useful time. Amount of time?
Jon Cross 47:09
No, it takes quite a while for it to actually start doing what it’s going to do. And then, excuse me, it does wear off afterwards.
Bill Gasiamis 47:21
So how, how did you go with the psychology part of this recovery? You wished you could have had somebody support you or offer you that type of service. Did you take up that later on?
Jon Cross 47:42
Well, just after understanding it, I just learned to cope with it. I didn’t really get to I tried to get in to see a neuropsychologist, and my insurance didn’t cover it, so never got there.
Bill Gasiamis 48:01
The psychologist and neuropsychologist is slightly different, though, neuropsych will determine your deficits as a result of the injury, and kind of map it to your brain and tell you that this is where your deficits are, and that kind of gives people a bit of an understanding of where they can focus their rehabilitation effort, whereas a psychologist is going to talk to you about the emotional side or or the cognitive side of the recovery.
Jon Cross 48:34
I assumed that it was just going to be the cognitive side to let me understand what I was up to for a challenge. Thankfully, my daughter had a little bit of a medical schooling, so she kind of knew what was I was in for, and she and my my wife, talked and clued me into stuff, so I didn’t like have fits of rage, but there was times where I just didn’t control myself, like I should have things angered me easily. And looking back, I feel really bad about some of the stuff that I had done. Just losing my temper.
Bill Gasiamis 49:18
Out of character.
Jon Cross 49:21
Yeah.
Emotional and Psychological ImpactBill Gasiamis 49:23
Pretty common. I hear that I was the same. I misbehaved a number of times, apologized later, but behaved in a way that I never behaved before, really aggressively after what I’d been through and the frustrations that I was experiencing. My wife was the person who bore the brunt of that. Who was the person who bore the brunt of your outbursts?
Jon Cross 49:50
Yeah, my wife has been just heaven sent. I can’t say much more than that. She’s. She’s just been a peach, if you will. I wouldn’t be here still. She’s held the family together for three years now, done an outstanding job.
Bill Gasiamis 50:12
So looking back, how have you changed? Obviously, not just physically and emotionally and mentally. Clearly, the strokes had an impact on on you. But how else have you changed? What? Where do you see some changes?
Jon Cross 50:30
Boy, that’s a big question. Yeah, no, still very anxious to, you know, get back to life anytime I reach out for help, it’s like I’m just trying to get back to life. Because, I mean, I took care of everything, like I was telling somebody in one of the emails I sent, you know, my poor wife has to do everything, you know, leaky faucet, taking the garbage out, everything that used to be what I did, and I enjoyed fixing things and taking care of stuff, and now I can’t do any of it.
Bill Gasiamis 51:17
And other than the things I’m sorry and other other than the things that you can’t do, what have you found out about yourself? What have you learned about yourself that you didn’t know?
Jon Cross 51:31
Yeah, well, I’m nowhere near as strong as I had hoped I would be.
Bill Gasiamis 51:39
Strong, how?
Jon Cross 51:41
Emotionally.
Bill Gasiamis 51:51
Pretty normal to have an emotional challenge after stroke, most people will Go there, and it’s hard for everybody, and getting back from there just takes a little bit of time and a lot of work.
Vivistim and Adapting to Life Post-StrokeJon Cross 52:08
Yeah, it does, but part of the challenge is knowing what and how to work on something, be it physically or emotionally. Like, how do I go about this, and I’m just grateful that they don’t the Old School ways of tie the good hand behind your back and say, Okay, now figure it out, because I would be lost.
Bill Gasiamis 52:34
The tough love way.
Jon Cross 52:36
Yeah. So I have a couple ideas, I will probably email you. Don’t need to waste time explaining them on the podcast, so you don’t mind, I’ll put it in the email when I send the picture of my prosthetic to you.
Bill Gasiamis 52:52
Yeah, fair enough, that’ll be fine. I’ll be happy to receive your email. All right. Thanks, Bill, you’re You’re welcome. Are you done now? Are you tired? How did we get to this stage?
Jon Cross 53:12
I’m doing good. I mean, I just want to answer any questions that you got anything else ask specific for you?
Bill Gasiamis 53:20
Okay, so I have a few more questions, so we’ll wrap it up in a little bit. But I wasn’t trying to wind you up or get you off or anything. Okay, so your engineering background, is it helpful in this situation, because engineering is about solving problems CAD and all of that is about visualizing something and finding where parts fit and how things can improve. Or if you do this, or you know what kind of result you’ll have, have you applied any of those skills into your recovery?
Jon Cross 54:06
Well, I’ve tried, but it’s also a detriment too, because you think you can get something figured out, but then there really isn’t a way. If you can’t move your dang hand, I can’t do that. It’s like something simple, like washing a pan out. It’s like, I need two hands to do it. So you’re right. It is, you know, with that background, you kind of have a different aspect of stuff. But it’s also like, I should be able to figure this out, but I can’t.
Bill Gasiamis 54:38
You can’t yet.
Support Systems and Future GoalsJon Cross 54:42
Well, just because, you know, the solution I have in my head isn’t possible right now because I don’t have use of that hand.
Bill Gasiamis 54:50
So it sounds like you have to get creative, because a lot of people have been through what you’ve been through, and are getting about their kitchen with one hand. Right? Yeah. There’d be devices that support people getting around the kitchen with one hand now, perhaps not to wash a pan. Maybe you can outsource that one, but there might be other devices that have already been developed that would support somebody being able to, for instance, chop, chop an onion.
Jon Cross 55:20
Yeah. So one thing that was, I was very happy when my daughter told me she did this. She would challenge me with something, and I’d look at it initially and think, I can’t do that. And she’s no dad. I tried it with one hand, and I can do it. So you can do it too. So I like that a lot when you know, your support has already tried to do something that they want you to try to do.
Bill Gasiamis 55:46
Yeah, so do you think it’s just a mindset thing, that perhaps there needs to be a little more of a shift in your mindset, in how to look at a problem differently?
Jon Cross 55:58
Yeah, Instead of instantly thinking, Well, no, I would normally do that with my bad hand, but now I can’t, so I’m not going to try. So that’s a mindset.
Bill Gasiamis 56:11
So I’m not going to try. That’s probably the worst thing that somebody can do, is not fail. Yep. Because at least when you fail, you find a way, if you might learn something about why you failed or how you can perhaps decrease your chances of failing next time. Definitely if you could share one lesson from your journey so far, there’d be people watching just newly diagnosed going through the early phase of their stroke. Is this? Is there any wisdom at this stage of your recovery that you might impart on other viewers or listeners.
Jon Cross 57:02
Well, thing I’d like to say is, you know, just do your own research. And unfortunately, you got to be your own advocate. And, you know, work with it. Try to find doctors that’ll work with you. Be patient too. I found that I have have a lot of problems with patients like, Okay, I’ve already got this plan set forth, and I try to accelerate it. And it doesn’t help to try to accelerate something that’s already planned. They want to happen now.
Bill Gasiamis 57:38
And is that because that’s just the way things happened. In the past, you were able to take action and get things done when you needed to get them done, and you didn’t have to wait.
Jon Cross 57:49
I suppose that’s some of it. But you know, having, you know, such a deficit and trying to make progress, and you feel like you run into a wall every time you turn around. You want to push to get things moving further faster?
Bill Gasiamis 58:05
Yeah, that makes sense. I completely understand that. I’m not sure how that changes or shifts, but definitely trying and failing will move you closer to your goal quicker, even though it feels like a roadblock, it’s perhaps giving you some data that you can use in your own way to get to the next phase.
Jon Cross 58:37
Yeah, I think you do have to always keep trying and learn from one another for real.
Bill Gasiamis 58:48
Yeah, well, John, I really appreciate you reaching out and joining me on the podcast. Thank you so much for your time.
Jon Cross 58:55
Sure, I appreciate you giving the time.
Bill Gasiamis 58:59
And I look forward to receiving your correspondence.
Jon Cross 59:04
Okay, and I’ll update you when I get some progress going. But you know what’s up.
Bill Gasiamis 59:09
Yeah, I’d love to know how the vivistim continues to support you and help you out, and whether you can find some further support for the spasticity.
Jon Cross 59:25
Yeah, time will tell you gotta get in and have the doctor start requesting it so I can see if I can make it happen.
Bill Gasiamis 59:36
Yeah, understood. Well, thanks again, John. Really appreciate it. That was John Cross sharing his journey with vivistim and some of the emotional and physical hurdles that come with post stroke recovery. What really stood out for me in this conversation was John’s honesty, especially about how spasticity became a bigger challenge than he expected, and how small. All wins, like pinching a post at night reminded him that progress is still possible. Remember, every story shared here is for learning, not medical advice.
Bill Gasiamis 1:00:09
Always speak to your own healthcare team before making changes. If you’d like to support that. Show you can do that at patreon.com/recoveryafterstroke, and remember to check out my book, The Unexpected Way That A Stroke Became The Best Thing That Happened, available at recoveryafterstroke.com/book. Thank you again to Banksia tech for making this episode possible.
Bill Gasiamis 1:00:32
They’re helping stroke survivors all over the world access innovative tools like the Hanson rehab club by Cerebro and everyone listening, remember you’re not alone in this recovery journey. I’m Bill Gasiamis, and I’ll catch you in the next episode.
Intro 1:00:47
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed all content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis.
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Hand Therapy After Stroke: How Small Steps Lead to Big WinsIntroductionWhen a stroke changes the way your hand works, it’s not just about movement — it’s about your independence. Hand therapy after stroke isn’t a quick fix. It’s a journey of patience, persistence, and celebrating the little wins that add up to life-changing progress.
In this episode of the Recovery After Stroke podcast, I sat down with occupational therapist Effie Sibson, co-founder of Banksia Tech, to explore what hand therapy really looks like, why the word “plateau” doesn’t belong in recovery, and how survivors can keep making progress even years down the track.
What Is Hand Therapy After Stroke?Hand therapy is more than just exercises for your fingers and wrist. Effie explains that occupational therapy looks at how the hand fits into everyday life:
- Can you dress yourself again?
- Can you cook a meal?
- Can you hold your baby or grandchild?
- Can you return to work or hobbies?
While physiotherapy often focuses on muscles, balance, and walking, occupational therapy connects those improvements to real-world tasks. Hand therapy after stroke bridges the gap between physical recovery and meaningful independence.
The Science: Neuroplasticity and “Learned Non-Use”Effie reminds us that recovery isn’t only about regaining what was lost — sometimes it’s about learning new ways to do things. That’s where neuroplasticity comes in.
Neuroplasticity is the brain’s ability to rewire itself. The more you use your affected hand, the stronger those pathways become. But the opposite is also true. If you avoid using your weaker hand and rely only on your stronger one, your brain actually shrinks its “map” for that affected hand. This is called learned non-use or maladaptive plasticity.
That’s why even tiny, daily attempts with your weaker hand are so important. As Effie puts it: “Recovery is not something that happens to you. Recovery is something you do for yourself.”
“Every little attempt you make with your affected hand keeps that part of your brain alive and engaged.” – Effie Sibson
Busting the Plateau MythMany survivors hear the word “plateau” — often from an insurance company or during discharge from hospital. It’s a word that can steal hope. Effie doesn’t use it at all in her clinic.
The truth? Recovery never stops. Progress may slow, but it doesn’t disappear. If things feel flat, it’s often a sign to change the approach, not give up. As one of Effie’s clients wisely said: “Don’t change the goal — change the plan.”
Celebrating Small WinsHand therapy is a long road, and it always feels hard. That’s by design — challenge drives neuroplasticity. But that doesn’t mean progress isn’t happening.
Effie encourages survivors to celebrate small wins:
- Holding a cup without spilling
- Buttoning one shirt sleeve
- Picking up a coin
- Cooking a simple meal
These milestones matter because your brain thrives on positive reinforcement. Recording short videos of your progress can show just how far you’ve come — even when it feels slow day to day.
The Role of Family and FriendsRecovery isn’t just physical; it’s emotional and relational. Family and friends play a crucial role by:
- Noticing small improvements you might overlook
- Providing encouragement and patience
- Learning from therapists how to support home exercises without “over-helping”
As Effie explains, sometimes the hardest thing is watching a loved one struggle. But allowing survivors to attempt tasks — even imperfectly — builds long-term independence.
Overcoming PerfectionismPerfectionism can trip up recovery. Survivors who push too hard for 100% performance often burn out. Effie’s advice? Aim for progress, not perfection.
Sometimes 85% is good enough if it means you can participate in the activity that matters to you. Hand therapy isn’t about flawless movement — it’s about reclaiming your life.
Tools That Support Hand Therapy at HomeOne of the challenges survivors face is access. Traveling hours to therapy can be exhausting and expensive. That’s why Effie and her team at Banksia Tech brought the Syrebo Hanson rehab glove to Australia.
This lightweight robotic glove helps stroke survivors practice hand movements at home, every day, without waiting for an appointment. It’s NDIS fundable in Australia, and international orders are available too.
It’s the kind of device I wish I’d had in my early recovery — something simple, affordable, and effective to help me keep practicing daily.
Key Takeaways for Survivors Use your hand every day — even tiny efforts matter. * Celebrate small wins — they keep your brain motivated. * Reject the plateau myth — recovery can continue for years. * Involve your family — they notice progress you might miss. * Consider home-based tools* — independence grows with daily practice.
ConclusionHand therapy after stroke is a journey of persistence, adaptation, and hope. Whether you’re days or decades into recovery, every effort counts. As Effie Sibson says, “A little bit every day — and celebrate the small wins.”
DisclaimerThis blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
Effie Sibson on Hand Therapy, Recovery, and Hope After StrokeOccupational therapist Effie Sibson shares why hand therapy is about small daily wins, not plateaus, and how survivors can keep moving forward.
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The post Effie Sibson on Hand Therapy, Recovery, and Hope After Stroke appeared first on Recovery After Stroke.
After Stroke Recovery: Terry Gilstead’s Story of Perseverance and PatienceWhen you hear the phrase after stroke recovery, what comes to mind? For some, it means the early days in hospital learning to walk again. For others, it’s the first year at home trying to rebuild daily routines. But for Terry Gilstead, recovery didn’t end after a year, five years, or even ten. More than three decades later, she’s still finding new ways to heal, adapt, and live with strength.
Terry’s story reminds us that recovery is not a finish line. It’s a lifelong journey of resilience, patience, and unexpected transformation.
A Stroke During PregnancyAt just 37 years old, Terry was six and a half months pregnant when she suffered a stroke caused by antiphospholipid syndrome — a condition that thickens the blood. She had been active, full of energy, and working toward her master’s degree in administration. Then, everything changed.
Her stroke left her with paralysis on her right side and aphasia, making it nearly impossible to speak. In the midst of ICU stays, near-death experiences, and even early labor scares, she had to navigate the unthinkable — protecting her unborn son while fighting for her own life.
Despite the odds, Terry delivered a healthy baby boy in December 1991. But she returned to rehab without him, facing weeks of separation, pain, and the reality of life with new deficits.
Finding Hope in the Hardest MomentsLike many survivors, Terry battled depression. She felt trapped in a body that no longer worked as before. Speech was painfully slow, and movement on her right side seemed impossible.
She even admitted to God that she was ready to die. Yet, her family — her husband, daughters, and newborn son — became powerful reasons to keep going.
“Every time someone told me I couldn’t do something, I said, ‘Watch me.’”
This defiant spirit became a turning point.
Returning to Teaching with AphasiaJust eight months after her stroke, Terry returned to her classroom. She relied on scripts, lesson notes, and creative teaching strategies. She integrated her rehab into her teaching — having students move their arms, practice cross-body activities, and engage with material in new ways.
Though her voice often gave out by midday, her persistence inspired both students and colleagues. She proved that after stroke recovery isn’t just about regaining what you lost — it’s about creating new ways to thrive.
A Seven-Year Spiritual StruggleBefore her stroke, Terry described herself as spiritual — more Zen than religious, open to many traditions. Afterward, she struggled with anger toward God. For seven years, she couldn’t reconcile why she had survived only to live with deficits.
But with time, her perspective shifted. Recovery softened her outlook, allowing her to reconnect with faith and gratitude. That spiritual healing became as important as the physical therapy.
Recovery That Never EndsToday, more than 32 years later, Terry is still in recovery. Balance issues have returned as she nears 70, but instead of giving up, she goes back to rehab. She uses exercise balls, resistance bands, and stair training to stay strong.
Her story underscores a vital truth: recovery doesn’t end. Progress is possible at every stage — even decades later.
“Don’t ever think you won’t get something back. Recovery continues — you just have to find your way to it.” – Terry Gilstead
Key Lessons from Terry’s Journey Patience is powerful. Terry discovered a patience she never had before. * Adaptation creates opportunity. Scripts, creative teaching, and therapy at home helped her re-enter life. * Community matters. Her husband, children, and colleagues made recovery possible. * Spiritual healing takes time. It’s normal to wrestle with anger, grief, and acceptance. * Recovery never stops.* Even 32 years later, she’s still proving what’s possible.
TakeawayAfter stroke recovery isn’t a destination. It’s a lifelong process of growth, healing, and adaptation. Terry Gilstead’s story shows us that no matter how much time has passed, there’s always room for progress.
If you’re on this journey, remember: you’re not alone, and it’s never too late to reclaim something new.
For more stories of resilience, check out my book The Unexpected Way That a Stroke Became the Best Thing That Happened.
Standard DisclaimerThis blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
After Stroke Recovery: Terry Gilstead’s Story of Perseverance and PatienceAfter stroke recovery never really ends. Terry Gilstead’s journey proves that patience and resilience can transform life after a stroke.
Support The Recovery After Stroke Podcast on Patreon
Highlights:
00:00 Terri Gilstad’s Introduction and Background
04:44 Out-of-Body to 27 Years On: Terri’s Long Stroke Journey
10:38 Near-Death: Terri’s ICU Revelation
18:40 The Stroke and Initial Hospitalization
22:39 Returning to Normalcy and Teaching
38:50 Long-Term Recovery and Personal Growth
44:36 Impact and Purpose of Sharing Her Story
Transcript:
Terri Gilstad’s Introduction – After Stroke Recovery
Bill Gasiamis 0:00
Hi, it’s Bill from Recovery After Stroke. Before we get into today’s episode, I wanted to thank everyone who’s been supporting the show. To those of you on Patreon. Your contributions help me cover the cost of producing this podcast after more than 10 years of doing it on my own. If you’re able to support the show in this way too, you can go to patreon.com/recoveryafterstroke to find out more.
Bill Gasiamis 0:23
Thanks also to the people leaving reviews on Apple podcasts and Spotify the YouTube commenters who keep the conversation alive, and everyone who has bought my book The unexpected way that a stroke became the best thing that happened, even those who stick with the ads you’re helping keep this show going for other survivors who need hope. Today’s guest is Terri Gilstad.
Bill Gasiamis 0:45
At just 37 and six months pregnant, she had a stroke that left her paralyzed on her right side and unable to speak. What followed was not only the birth of her son, but also decades of continuous recovery, a story of patience, persistence and her unforgettable watch me spirit and before we dive in, a big thank you to Banksia tech for supporting this episode. They’re the proud distributors of the Hanson rehab glove.
Bill Gasiamis 1:11
So Rebo, this glove is designed to help stroke survivors improve hand function at home, whether you’re early in recovery or years down the road, you’ll hear more about it later in the episode. Terri Gilstad, welcome to the podcast.
Terri Gilstad 1:25
Thank you very much. I’m glad to be here.
Bill Gasiamis 1:28
Tell me, what was life like before stroke for you?
Terri Gilstad 1:33
Okay, I don’t know if you can see it, but this page that I’m showing you is it’s a page of pictures that was of me before the stroke, and I was just in a new relationship with my current husband, and I was really big at skiing and doing things with my daughters. I was really good. As far as I had real big drive. I was type A personality. I really felt that I was ready to get into my masters.
Bill Gasiamis 2:17
So you wanted to get your Masters in what field?
Terri Gilstad 2:20
I was going to get my masters in administration, and liked to I was a person that liked to do really different things, and I was the first person in my school that was working with cooperative groups, and I had all My cooperative groups set up in my classroom, and it was working out really, really well. So I went home and was feeling like I had had a headache, a migraine headache all day long.
Terri Gilstad 2:54
And I was sitting there thinking, Okay, this is the time that I get to get my daughters down, everything will be fine, or whatever, and then I would go to bed and wake up in the morning with the headache gone. And it kind of didn’t work out like.
Bill Gasiamis 3:12
So what was causing the headache?
Terri Gilstad 3:15
The headache was caused by my blood thickening up. I have anti phospholipid syndrome, which I never knew anything about until after the stroke and the the the way it worked, was something that it always gave me a migraine headache, and probably a lot of just my I had really blurry vision and had like wavy lines in front of my vision or whatever.
Bill Gasiamis 3:51
So how little were the children you were 37 how little were the children.
Terri Gilstad 3:56
The children in my class were eight, eight years old? What about your children? My children, my oldest was almost, I think she was nine, and my middle daughter was, I think eight. They’re 14 and a half months apart, so, but that was the ages of my children. So then I woke up in the middle of the night thinking, you know, something’s not right about, you know, all this stuff. And I said, you know, and I woke up my husband, and I said, Would you please call my doctor and also call an ambulance? Because I think I better go in with this.
Out-of-Body to 27 Years On: Terri’s Long Stroke JourneyBill Gasiamis 4:44
It has been 27 years, yes, and you’re still kind of living with the effects, the impact, the deficits that stroke created. Mm, hmm. On the day of the stroke, what were your first thoughts when you were diagnosed as having had a stroke? Did you go through that process in your mind?
Terri Gilstad 5:10
I did not know that I had a stroke. I just I was I remember going to the emergency room, being taken over to a CAT scan, having a CAT scan done, nothing was unusual about it, because I was, you know, behaving like everybody else would behave, I guess. And then they took me back into the emergency room, and my doctor was there, and he said, you know, he talked with the other people that were there and reading the scan. And they said it doesn’t appear that she’s gone through anything, which I know I was one of those people that never thought about a stroke or whatever.
Terri Gilstad 5:50
So I didn’t realize that it would probably take a few hours for that to start showing up on the prints or whatever. So I was there. I was talking to a lady there in the room who was one of the mothers of one of my students at the time, and she was like, how are you? And I’m just like, you don’t, don’t know what’s going on. And and I asked her if I could go to the bathroom, and she said, why don’t we give you a catheter first. And I was like, okay, whatever. That is, whatever. And I remember saying, I really feel tired. I just, I think, I’m just going to go to sleep.
Terri Gilstad 6:32
And everybody was like, Fine, go to sleep. And when I woke up the next morning, my I was in the ICU, and my husband was beside no not yet, not at the time I woke up and I was in ICU, at the hospital that I was at in Royal Palm Beach, and they were calling my husband from Shands. My husband had been in touch with my sister and her husband, who were up at Shands hospital, the teaching hospital there, and they decided that they were going to fly me up there. So we were waiting for the plane to land, and then I was going to be taken out.
Terri Gilstad 7:13
But I realized at that point in time, though I couldn’t talk to my husband, and my entire right side of my body was completely paralyzed. I mean, I could feel, I feel if somebody touched me, but I couldn’t lift my arm up. I couldn’t lift my leg up. My face was quite just very, very desperately, yes, very much. And so it was like, but nobody had told me at that time that I had had a stroke, so they flew me up to Shands, took me up and put me in the ICU at Shands.
Terri Gilstad 7:52
And it was like, I didn’t really notice that, you know, I was like, what’s going on or whatever, but I couldn’t say, you know, somebody tell me what’s going on, because I couldn’t get any words out. But it was a really interesting time, because during that time, I kept on going out, and that was when I would go out of my body and look down and see my body on this table. And I was sitting there thinking, you know, this is strange, but, you know, this must be the time that I’m supposed to be going or whatever.
Terri Gilstad 8:30
But, you know, I’ve got a baby. I didn’t tell everybody, but I was six and a half months pregnant at the time, and I was sitting there saying, what’s going on with this, you know, just what’s happening. And they kept, you know, just then I was like, all of a sudden, I felt the calm this. I felt the most unbelievable calm moment. I can’t even describe it. It’s just so incredible. I’m not afraid to die, I’m afraid of death. I’m not afraid of death, but I am afraid to die. So I was sitting there and I was thinking, you know, I was the whole time this was happening.
Terri Gilstad 9:14
I had my complete thinking ability. And I was sitting there thinking, you know what’s going on. And I think I, you know, I’m supposed to be going up to God or whatever. I’m going to be doing there, whatever I was like, doing some Zen with my sister. My other sister was a Zen practitioner, and I thought, you know, I don’t think I want to be here, and I don’t want to leave my husband just having to be with a woman that is just, I mean, it was like I was a half a person I and so I was sitting there thinking, Okay, God, you know you’re, you’re going to be able to take me.
Terri Gilstad 9:55
And then my sister, the doctor, came into the room, and she said, I. Have you she said that she was holding a picture. It was a sonogram of my child. And I was like, there was a baby in there that was waving his hand. It was like, Is this baby saying hello to me. This is wonderful. So I was sitting there saying, this is okay. It’s going to be me and I’m going to be okay. And my son wasn’t about to be born until January. He wasn’t scheduled to be due until January, and this is, like, October 31 and I was like, you know, I think that he’ll be okay.
Near-Death: Terri’s ICU RevelationTerri Gilstad 10:38
If I, you know, have to pass away, or whatever they can deliver him, they’ll take care of him. Everything will be fine. And then I would go out, and I’d go back through this thing, and I was out of my body that I was feeling like I was a part of an entire group. And I never thought about I, I always thought about we. And it was like, you know, they, they say that when you die, you you go out, you become one with the whole group of whatever we are, we the beings that were up there, and he or Maya thing was, I was sitting there saying, okay, it’s okay.
Terri Gilstad 11:23
I’m going to die or whatever, but it’s going to be alright because my husband’s going to be there. Well, my parents both came. My sister came down. My other sister was there at the time, and I was just like, I was ready. I was going to go. I was and then my sister said, you can’t go right now. And I said, like, and she said, You we have to stay and keep you here longer, because the the baby is not going to make it or whatever, and so we have to make you stay here.
Terri Gilstad 11:54
And so I thought, okay, maybe that’s why God isn’t taking me. I’m having to stay wait until it’s time to have the baby or whatever, and then I can die.
Bill Gasiamis 12:06
We’ll be back with more of Terri’s remarkable story in just a moment. I wanted to take a second to thank Banksia tech, who are supporting this episode. They bring stroke survivors The Hanson rehab glove by saribo, a soft robotic glove that helps you retrain hand movement at home. It also helps retrain grip and flexibility. It’s practical, it’s effective, and it can make a real difference no matter where you are in your recovery.
Bill Gasiamis 12:32
And the best part, you can order it right here in Australia and Banksia tech can ship it internationally too. I love being able to share tools like this with my listeners, because they solve real problems that survivors face every day. Now let’s get back to Terri’s journey, including what it was like to return to the classroom with Aphasia just months after her stroke.
Terri Gilstad 12:53
And I was like, I cut completely, like I really felt that I was going to be okay or whatever. And so I, like, I was in the ICU for three weeks, and they said, you know, whatever you feel like doing, just go ahead and do it. And I thought, well, I wanted to die, but and so then I thought, Okay, I’m not gonna die. I’m gonna have this baby or whatever. And they said, you have three weeks that you’re gonna stay here a chance.
Terri Gilstad 13:29
And I thought, okay, and I knew I couldn’t talk, so I thought that’s one week for me to get that my power up speech, because I was known as the mouth of the south and they arranged to have me move down here to St Mary’s Hospital. That was the only hospital that they had down here at the time that had a pediatric neon neonatologist. Wow. And they said, you know, it was okay, because I could be with her, or whatever, that she would be around. Whatever started happen. It all started taking place. But so I, we got moved down, and I was put in a room with another woman.
Terri Gilstad 14:15
And the lady, I don’t know she, she had something different going on with her, but it was like, and I was sitting there, you know, just crying the whole time. I couldn’t control my emotions at all. I was just crying, crying, crying, crying. And so they decided to put me into a room by myself. And so I went into the room by myself, and I was just, you know, lying in the bed, and just, you know, wondering what was going to happen. And they brought me a book, and it was one of those books, like a, not a harlequin, but it’s some type of a book that I would just be reading, or whatever.
Terri Gilstad 14:53
And I could read it. I could read it to myself, but then I couldn’t remember. Were what I had read. So it was like, I always had to start over again, and I’d be able to read those pages faster, and then go a few more pages and get tired. And, you know, it was a very and I don’t remember what the book was.
Bill Gasiamis 15:14
So, yeah, wow.
Terri Gilstad 15:19
It was interesting.
Bill Gasiamis 15:20
You’re in, ICU, you’re six months pregnant, and then you eventually came out of ICU. How long did it take? Yes, I did come out of ICU.
Terri Gilstad 15:30
They kept me in ICU, up in at Shands for a week, and then they put me in, Oops, excuse me. They put me in a room by myself, that it was like I was there was not a regular hospital room, but it was a room where they had like a step up from that they would know that I was in there and I wasn’t a person who could speak to them. So people came in and spoke with me a lot.
Terri Gilstad 15:59
So it was really strange, you know, they were trying to get me to talk, and I was getting a little bit better, but it was still like, you know, it’s very strange to be a person who is used to be such a very fast talker or whatever, to have to sit there and think, Okay, I’m going to answer this question that They just put to me or whatever, but I have to figure out how to get the words out of my mouth and and my vocal cords and all were I’m halfway paralyzed or whatever. So that was a little bit more difficult.
Terri Gilstad 16:35
But at the same time, it was like was sitting there and I was trying to do physical therapy, trying to do the occupational therapy, having a wonderful time. You know, I do everything with my right side, and they tell me, okay, now with my left side, left side, then my right side, I couldn’t do anything. It was like an they had me standing up. I’d stand up and they have me throwing this basketball, and then they wanted me to throw it with my right arm. And I was like, that’s not going to work, or whatever. So they had decided to monitor me.
Terri Gilstad 17:15
And so I guess it was probably, it was probably maybe the middle of November that I had gotten back down there, or whatever. And so they were monitoring me with a thing. And I thought, you’re not going to put group you stuff on, you know, anything. It was a sonogram. And she said, Are you feeling strange? And I was like, no. And she said, because you’re like having contractions every four minutes. And they said, so I got to be discharged from the rehab, taken down. Had to be admitted to the maternity ward.
Terri Gilstad 18:00
They took me in, gave me enough medicine that I couldn’t see straight, much less try to talk or whatever. But it took them about 24 hours to get the labor stopped. And then they said, okay, you’re okay. And I was like, yeah, okay. So I had to get just discharged from the maternity, take him back up to the rehab, admitted to the rehab, and it was like, brother, then I was okay for a while, and then it was like, I think it was probably the beginning of December.
The Stroke and Initial HospitalizationTerri Gilstad 18:33
And I was really not making progress, like I could start rolling myself around using just my left side and my left foot to roll around the floor up there in a wheelchair. But they always would say, Okay, it’s time to check you again. And everything was fine, until one day it wasn’t, and the girl goes, you’re in labor again. You’re having contractions again every couple of minutes or whatever. And I thought this is ridiculous, so had to go back down, had to come back up. It was all crazy.
Bill Gasiamis 19:07
So were you in early in early labor? At some stage, did you go into early labor?
Terri Gilstad 19:17
I was in early labor, but I think I wasn’t dilated or whatever check down there, but I was, I was dilating to about two centimeters, but I had, I couldn’t get to like 10 or whatever, and they didn’t want me to go to 10.
Bill Gasiamis 19:36
So then that pause the for a little while. Yes, and then you went back up to the rehab Ward, continued your rehab and then you went into labor again. Yes, okay. And so when you went into labor and finally had the baby, was it was induced, natural birth C section.
Terri Gilstad 19:59
My doctor said they that I would not be able to have a natural birth as far as the feeling it all and pushing the baby out and things like that. I’d had two all natural births with the first two kids I had. And then it was, I guess they were asking me it was in the early weeks of December, and they said that they could tell that my baby was going to be probably eight pounds or so right then. And it was like, I haven’t ever had one that large or whatever. And they said they were going to induce me.
Terri Gilstad 20:40
So it had to be discharged from the rehab unit, readmitted to the ward again for the the baby, and then I guess I went down there about 10 o’clock, they started the Pitocin drips, everything else. And my husband was there, and my doctor was there. But then he was like, no matter what happens when you feel like you’ve got to push, don’t push, and you just have to let us know somehow that you you’ve gotta push, or whatever. So by that afternoon, about four o’clock, my son was ready to be born. It was so funny, he wanted to stay in the womb while he was like, it wasn’t his time.
Terri Gilstad 21:28
Like, I mean, he wasn’t coming out or whatever. And I was like, come on, you’ve been there so many times before, anyway, but then, then he was able to be born by forceps delivery. And it was gorgeous. My doctor delivered beautiful, beautiful baby boy or whatever. And I was just like, this is great. And then he it was like, there was this real a bunch of stuff going on. And my mother came in, and my mother in law came in, and my daughters came in, and everybody was looking at this baby or whatever, and but I was watching them do all this stuff.
Terri Gilstad 22:08
And I hadn’t given up my my thoughts, and I thought, Now I can die. Now I can die. And because I didn’t feel like I was any thing. I mean, it was just like I had been a whole type A personality. I had so much stuff going on or whatever. Now it was like, I’ve done my duty here. I’ve had the baby, so I’m going to be able to go ahead and die. And it was like, I was not spoiler.
After Stroke Recovery – Returning to Normalcy and TeachingBill Gasiamis 22:39
Spoiler alert. You didn’t die. So the baby’s born, you didn’t die. You guys eventually, eventually went home. And you’re definitely got used to understanding that being a mother, the previous two times you were fit and well, full body, bodily functions. Everything worked well, and then you went home, I imagine at some stage with a baby, and also half of your body not able to work properly and move properly. So what was it like to go home under those conditions with a brand new baby after the deficits that stroke left you with.
Terri Gilstad 23:24
Yes, I believe that it was okay for me to go home that way because I already had two babies that I’d had all my faculties about me or whatever, and I had my husband and my nine year old and my eight year old daughter, and I thought, this is okay. This is alright. You know, I didn’t have to pick him up, or I didn’t have to change the diapers, or I didn’t have to do this, and my husband had moved all their stuff downstairs. We were in an upstairs downstairs house at the time, part of it was, yeah, go back rehab. I know you will.
Terri Gilstad 24:10
My husband just wanted me to let you know that I was in there and I had the baby with me for a week, and I they’d bring him to me, and I could, like, hold him in my arm, even though I wasn’t able to, like, do anything with my arm. And then I could feed him with my with the bottle or whatever. And then after a week, he was discharged, he was able to go home, and I had to stay there for another month.
Bill Gasiamis 24:38
Wow, so, babies at home, babies at home, you’re in rehab for another month. Are you still thinking I should be dying now, or I need to die? Or did you still go? Did you go back to I need to get home.
Terri Gilstad 24:54
I got, I was, I was hurting the whole time after I had. Had the baby, or whatever, I had a hematoma inside of me that was the size of a grapefruit, related to large. And just having the baby or whatever, I was on Heparin, which is the blood thinning medication, yeah. So I was doing everything. Everything was all right, or whatever. And then it was like, you know, I couldn’t stand this. I couldn’t stand just the thought of having to just go through my life with this whole all this pain and stuff.
Bill Gasiamis 25:36
Is that the non acceptance part, you didn’t accept the stroke that had happened to you, the condition you were in.
Terri Gilstad 25:43
Exactly, and I was so upset about it, and all I wanted to do was die, and I thought, you know.
Bill Gasiamis 25:53
About your condition. Were you upset about that? It happened to you? What were you upset about?
Terri Gilstad 25:58
I was upset about my condition because I couldn’t talk to people. I could not, you know, do the things that I wanted to do with the baby, but I was just like, it’s going to be alright, or whatever. Well, the doctor came in and said, we’ll get you in the surgery for another day or so. And I said, Why not today? And I was in the room to do it within the hour, so that that was when they found out I had the hematoma inside me, or whatever, and they got it all taken care of, and we’re fixing all this stuff.
Bill Gasiamis 26:40
And I was like, what was the hardest part to accept, though, was it the fact that you couldn’t be with your baby? Was it that you couldn’t speak? Was it that you couldn’t move your body? Which was the hardest part?
Terri Gilstad 26:52
Yes, yeah, I think the hardest part was not being able to move my body and not being able to speak at the same time. And then when I came out of the surgery, and I felt better, then I realized that God was not ready for me yet. It was like, for some reason, he was just saying, This is not your time. And I was very, very upset, and I think I did not communicate the way I would communicate with God, usually for about seven years.
Bill Gasiamis 27:29
And you were very upset with God, very upset, very upset for having put you in this situation.
Terri Gilstad 27:37
Yes, so or, or for for not taking me. I was like, Why did you leave Why did you leave me down here? Okay, so. But then I knew that I was going to have to go back to school for the next school year, whatever. So I had from, I think I got out January 20, which was Bill Clinton’s Inauguration Day or whatever. And I was I went home, and it was like was going around, and I was very depressed. And at the time, I didn’t know that it’s supposed to be depression is a very, very common thing that most stroke survivors have a lot of.
Terri Gilstad 28:20
And at the time, it was like, I just can’t be around here. I just can’t do all this stuff or whatever. But then my husband and my mother in law, who was also my assistant principal at school, said that, you know, I had to go and walk every morning, and I had a Hemi Walker and then a cane. And then when I was back at school, I was able to start walking pretty much with my leg.
Bill Gasiamis 28:48
Let’s go back, a little bit. You’re an amazing guest, by the way. I love that information that you have, and it’s probably my, my responsibility, to get it out of you at the right moment. So okay, so it’s all good. Now I want to go back to that part. You’re upset with God. God didn’t take you. Your relationship with God for seven years was not the same as it was before. Now, what was your relationship like before you had that experience with God, did did you have? Were you going to church? Were you religious? What? What kind of a relationship did you have?
Terri Gilstad 29:29
I had more of a it’s more Zen than Buddhist or Christian or whatever. I mean, I knew that everybody was supposed to be celebrating their own gods in their own way, that we all have one God. I mean, it’s like, you know, because whoever My God is can be, you know, your God is in another religion.
Bill Gasiamis 29:57
They might have a different name they might look at. Different on pictures, but we all are one. We all kind of have one God, so to speak. And your connection was more like a spiritual connection than a yes, it was directly religious type of connection.
Terri Gilstad 30:15
Exactly, It’s like I had read the Bible. I had gone through a lot of books about Buddhism or whatever, and everything that I was touching spoke to me that it was like, I’m not any of those. I’m just me.
Bill Gasiamis 30:33
Okay, so what, what happened in the next seven years? How did you like, did you actually remain mad? Like, did you have conversations like, how could you have done this to me and all that type of stuff? How did you express that anger or madness at God.
Terri Gilstad 30:50
The very first, probably months after I got out and was doing my thing walking around the neighborhood with my cane or whatever. It would be like me telling him, why have you done this? You know, why did you do this to me? And then I thought, well, I know you didn’t do it to me, but you had a way of keeping me better than the way I am, or whatever, a very positive, upbeat person. And so having the depression was just like, like, it was just way down on me.
Bill Gasiamis 31:27
And I was going to say, like, and did you were you feeling sorry for yourself, like, were you doing, like, the pity party type thing?
Terri Gilstad 31:40
I was like, you know, how am I doing this? And then I would sit there and say, I’m not doing this. I’m just absolutely not doing things. I went back to school the following, the following August, and when I got back in school, or whatever. It was like, I’ve gotta talk. I have to do this. I am an elementary school teacher, and there have to be seven points of the day that I’m doing math and science and reading and dinner.
Terri Gilstad 32:15
And it was like, Okay, I went back to my thinking, and I thought, you know, I was so upset with myself for being so upset about God or whatever. And I thought, well, I can’t, I can’t be that way.
Bill Gasiamis 32:30
So not only were you upset at God, you were upset at yourself for being upset at God. That’s a lot of upset going on there.
Terri Gilstad 32:38
Here it was. It was a lot. But then I thought, well, I’m going back to school in August, so I thought, I’m going to make sure I get back to school and I’m going to have everything that I have to say for the entire day right now. And I realized I couldn’t type on my computer anymore, not with two hands, but with one hand. I did it like it was okay. So every day I would get prepared to go to this room. First of all, I went to the in second grade. This was my third year teaching second grade, or not second but third grade. And I was like, you know, this is just strange.
Terri Gilstad 33:25
And they said, Well, we’re starting something in the school called inclusion, inclusive education or whatever. And I thought, Alright, I can, I can do inclusion. And they let me go with a girl that I knew, or whatever, another teacher who was a special ed teacher, and it was going to be wonderful, because I would have really smart kids for half of my class, and then the other half of my class were the kids that were SLD specific Learning Disabilities.
Terri Gilstad 34:00
But they could have all sorts of information like they’re they were not able to get their speech out properly, or they weren’t able to write things down or whatever. And so I had to learn all the different ways that they would be learning. And thought I have to teach from their visual, their auditory and their kinesthetic what they would do so much. And so I would sit there and write down my lesson for spelling and my lesson for and each day, it was like, I would stand up there and having books in my hands or whatever, was pretty much normal that it was like, Okay, this is my script.
Terri Gilstad 34:39
And if I can’t figure out what I’m supposed to say, I just got to let look at my script again. And so I had been doing the stuff that would help me talk very much. And also, my husband would take my son and my daughters out, and I would be the only one left in the house. And I. Would scream at the top of my lungs. Just scream to help strengthen my lungs. And so it was really so.
Bill Gasiamis 35:11
So that is how long after you came back from hospital and you were at home.
Terri Gilstad 35:18
Let’s see, I came back from the hospital in January and the following August.
Bill Gasiamis 35:25
So, eight months after everything that you went through, you went back to work. Yes, I did. And you taught at a school, even though you were dealing with aphasia.
Terri Gilstad 35:38
And I had my notes there, and I knew that I would be able to talk like, you know, I put information on the board, and I could talk about that information, and I’d have what they’d be talking about. We’re going to do spelling for something. And I’d had everybody stand up in the class, and they would have to raise their arm up, yeah, out cross and then, and so I was still bringing my therapies that I was having in the hospital.
Bill Gasiamis 36:12
Into your classroom.
Terri Gilstad 36:14
It was exactly right.
Bill Gasiamis 36:17
So did that help you? So what role did going back to school play in your recovery? How did did that? Not, not I understand, like what you did and how you did it, and all that kind of stuff. But what happened with the I don’t want to be here anymore. Did that go away when you were back at school? How did that change that?
Terri Gilstad 36:39
That went away. It had probably gone away back when I went home, probably by March or April. It was like, Okay, I’m gonna be here for a long time. I’m definitely not gonna be going back into the La, La Land that I went into. But it was like, you know, I was not ready to give up, but I was able to teach, like, from my notes or whatever, for about half a day in the beginning. And then by by 1111, 30 each day, my voice would start going out or whatever. And that’s when Linda would take over, my friend.
Bill Gasiamis 37:21
Okay, so your assistant was there to take over and support you with your recovery? Well, that’s very, very useful and helpful to help transition somebody back into work. Was there a particular person that supported you more than anybody? Kind of somebody that was your your mentor, your guide, who was it that sort of stepped up that you didn’t expect, that really impacted you in a positive way?
Terri Gilstad 37:50
My husband, my husband was probably the most supportive and the most positive thing that was around me at the time, my sister, my doctor’s sister from Gainesville or whatever, called me one morning, and she was talking, and I said something about, I think I’m going to be trying to go back to work in August. And she was like, Well, you know, you probably are going to say that, but you’re probably not going to be able to make it back.
Terri Gilstad 38:24
And I was in there going, excuse me, it was like, every time somebody said something to me, like, you’re not going to get this if you don’t have it back by the time six months have passed, just don’t expect to get it back. And I was like, tell me, and I will get that just so it was like that was the point where it was her, her having to say that.
Long-Term After Stroke Recovery and Personal GrowthBill Gasiamis 38:50
That was your turning point. Was that your exactly, big, exactly. So your biggest frustration was having something to say and then forgetting or not being able to say it and get it.
Terri Gilstad 39:01
Not being able to get it out. Yeah, that was, it was horrible, but I had to admit, it made me a better listener. Yeah. I mean, I was, I was a good talker, but I was not as good a listener as I had to become.
Bill Gasiamis 39:19
When did the shift happened with God, like what happened? And you kind of felt okay with God.
Terri Gilstad 39:28
I think it was about seven years till I finally somebody could say something to me, and I was able to respond, but slowly, and it took me probably about that entire first seven years for me to be able to initiate a conversation, and I thought, and it was just such a relief that I was the person that was able to say hello before somebody else said hello to me.
Bill Gasiamis 39:57
So, it took seven years for you to. Get to that stage. Love continuous recovery, things improving, things changing, difficulties, deficits, problems, all sorts of stuff that you’re going through and yet they’re still experiencing recovery. After seven years, you’re still, we’re getting better and better and better.
Terri Gilstad 40:20
And I’m still, I’m still experiencing recovery after 32 years, it’ll be 33 years by this.
Bill Gasiamis 40:32
And looking back, how have you changed? What? What strengths have you discovered in yourself that you didn’t know you had for example.
Terri Gilstad 40:41
I discovered that I have a lot of patience, which I didn’t think I would ever be able to say that, but I realized that when I was taken out of the talking world for a while, it gave me enough time to think and to relate to all the people that were around me and to my children and their friends or whatever. And I thought I had to learn patience, I think, as one of my really good skills.
Terri Gilstad 41:16
And I still, I was really disappointed, because everybody was doing certain things where you could take these tests and it would be, you know, like 100 question test or whatever, and had to put all the answers down. I couldn’t take tests like that anymore because I could not remember things that I would study for the night before, I wouldn’t be able to do anything. My thing was to sit back and fake it till you make it type. I was able to write down all the words that I would say, and then I had the scripts every day.
Bill Gasiamis 42:02
After that, find another way of getting through things.
Terri Gilstad 42:06
Exactly.
Bill Gasiamis 42:08
Did you have to like, adapt.
Terri Gilstad 42:13
Yes, had to adapt in a lot of ways, yeah, a lot of ways, yeah.
Bill Gasiamis 42:20
So what’s life like now, 32 years later, daily living. Did you mention something about some deficits having got worse recently, or something?
Terri Gilstad 42:34
As I got closer to 70, I started feeling like I was going off balance physically, and I have been told that I should be using my cane much more than I was using my cane. And I have been using my cane.
Bill Gasiamis 42:53
Have you been, have you been told you should go back to rehab and do some.
Terri Gilstad 42:58
I’ve been, I have been, that is one of the things that I could tell any of your listeners, or whatever.
Bill Gasiamis 43:04
So you so, so you have gone back to rehab. You still do realization. You still follow all of that stuff, trying to make sure that you stay on top of the balances, etc. Yes. And does it improve? Did you find improvement?
Terri Gilstad 43:19
It does. Yeah, it definitely improves. I usually get it for about six weeks at a time, and I will learn all the exercises. I use the exercise falls, I use the exercise bands. I use the stairs so they walk up, and then you turn them walk down, and just everything that they could put me through, I would have to go back do them again, and then each time I get strong enough, and when I go out, I’d have to be able to come home and do them again. But I decided that it’s probably going back to the rehab place that I went to the last time is probably a good place to be just to help me get my step back.
Bill Gasiamis 44:06
Good move. Good move. So your this is probably more about me than you like I would have expected. I would have expected that by the time I got to 32 years post stroke, I’m done talking about it. I’m done rehabilitating. I’m done all of that. It’s just like because I’m only 14 years post stroke, so by then I get, by the time I get to 32 years you know who needs to talk about it? However, you still found my podcast.
Impact and Purpose of Sharing Her StoryBill Gasiamis 44:36
Somehow. You still reached out. You still felt that there was important for you to join the podcast and share your story. Why is that? What is the why is it necessary to still, after all these years, reach out to the community and share your story?
Terri Gilstad 44:56
Because I realized that I. I went from being very able to being very disabled, and it happened like overnight, and I was having such a difficult time getting it back. I was so mad at God. I was like, No, how could he have done this to me? Did it? And then when I changed my attitude, when I changed my attitude, and I was ready to say, Okay, I’m going to do this. And they’d say, Well, you’re not going to be able to do that. And I was like, watch me. Watch my epic cat. Hello. Say hello. Hello. Yes, I was always there, though.
Terri Gilstad 45:44
It’s like somebody would say to me, you’re not going to be able to do that ever. And I said, Watch me. Just watch me. And at 70, I am still getting things back. It’s just It amazes me, and don’t ever, ever ever think that you will not get something back. I may not be able to play kickball, but I can watch the kids play and let everybody know you’re out. Yeah, but I just had to adapt to ways that I could do it. I could be a part of what everybody was doing, but in my own special way.
Bill Gasiamis 46:26
So what a lovely conversation. Thank you so much for reaching out overcoming all the challenges you needed to overcome to get on the podcast. I know we had a few technical problems, Zoom issues and all that kind of stuff. So I really appreciate your persistence and your perseverance. It’s lovely to meet you. Thank you so much for sharing your story.
Terri Gilstad 46:51
You’re welcome. Thank you so much for having me on.
Bill Gasiamis 46:54
That was Terri Gilstad, and what an inspiring conversation. Her story is proof that after stroke, recovery never really ends. That even decades later, there’s still progress to be made. If you found hope in Terri story, remember to Subscribe on YouTube or your favorite podcast app so you don’t miss future episodes. And of course, you can pick up my book. The Unexpected Way That A Stroke Became The Best Thing That Happened, at recoveryafterstroke.com/book.
Bill Gasiamis 47:21
a final thank you to Banksia tech for supporting this episode and for making the Hanson rehab glove by so Rebo available to stroke survivors in Australia and internationally. Most importantly, thank you for being here by listening, commenting and sharing, you’re helping build a community where survivors don’t feel alone. Remember to keep moving forward. Recovery is a journey, and you’re not walking it alone.
Intro 47:45
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed all content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis.
Intro 48:15
The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.
Intro 48:39
Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content, if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be call triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department. Medical information changes constantly.
Intro 49:06
While we aim to provide current quality information in our content, we do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide, however, third party links from our website are followed at your own risk and we are not responsible for any information you find there.
The post Terry Gilstead: 32 Years of Recovery, Motherhood, and the ‘Watch Me’ Spirit appeared first on Recovery After Stroke.
Etanercept Stroke Recovery: What You Need to KnowIntroduction: No Hope? No Quit.For many stroke survivors, the message is the same: “This is as good as it gets.” Doctors talk about plateaus. Friends drift away. The system quietly suggests that progress stops after a few months.
But here’s the truth: recovery doesn’t end unless you quit. And for some survivors, new frontiers in treatment are offering reasons to keep pushing forward. One of the most talked about and controversial is etanercept stroke therapy, often delivered as perispinal etanercept.
This post dives into what it is, what the research says, and what survivors need to know.
What Is Etanercept?Etanercept, also known by the brand name Enbrel, is a medication originally developed for autoimmune conditions like rheumatoid arthritis. It works by blocking TNF (tumor necrosis factor), a chemical involved in inflammation.
Researchers began asking: if inflammation plays a role in the brain after stroke, could etanercept help restore function? That question led to etanercept stroke clinical trials and off-label treatments around the world.
Perispinal Etanercept Stroke TreatmentThe approach most often used in stroke recovery is called perispinal etanercept. Instead of injecting the drug into a vein or muscle, it’s given into the tissues near the spine, allowing it to reach the brain more directly.
Some survivors report immediate improvements: clearer speech, better movement, sharper memory. Others notice subtler changes over weeks. And some notice no change at all.
That range of responses has fueled both hope and controversy.
Etanercept Stroke Clinical TrialsHere’s where it gets real. Etanercept stroke clinical trials are still limited. The treatment is not yet FDA-approved for stroke recovery. Some early studies and case series suggest promising results, particularly in areas like:
- Motor function (arm and leg movement)
- Speech and language
- Cognition and clarity
- Mood and energy
But larger, double-blind, placebo-controlled trials, the gold standard of science, are still needed.
This means survivors are often left at a crossroads: do you wait for more evidence, or do you pursue the treatment knowing it’s experimental?
Etanercept Stroke in AustraliaInterest has grown worldwide, including in Australia. While some survivors search for an etanercept stroke Australia trial, at the time of writing, most treatments are still offered in limited clinics overseas. That often means significant travel and cost.
For many, this raises a painful question: how far are you willing to go for even a chance at improvement?
Enbrel Stroke Recovery: What Survivors SayThe name Enbrel is often used interchangeably with etanercept. And if you type “Enbrel stroke recovery” into YouTube or survivor forums, you’ll see countless stories. Some show dramatic before-and-after videos. Others describe disappointment.
That’s the nature of experimental treatment. There are no guarantees. But there is one constant: those who pursue it are unwilling to settle.
The Mindset That MattersLet’s cut through the noise. Whether you pursue etanercept, stem cells, or any other therapy, the mindset is non-negotiable:
- Set short, measurable goals. Don’t just dream of “getting better.” Define it. One push-up. One step. One clear sentence.
- Win the day. Do the work today. Not next week. Not after someone rescues you. Today.
- Reject limits. Doctors, statistics, and skeptics will tell you recovery stops. They’re wrong. Neuroplasticity continues for life.
- Stay relentless. Some treatments will help. Some won’t. But your effort is never wasted. Movement, challenge, and struggle. They all fire the brain.
This is where stroke recovery looks a lot like elite training. You don’t back down because the weights are heavy. You adapt, you adjust, and you push again tomorrow.
Should You Try Etanercept Stroke Treatment?That’s a decision only you — in consultation with your medical team — can make. Here’s a framework:
- Know the facts. Etanercept is off-label for stroke. Clinical trials are ongoing, but definitive proof isn’t here yet.
- Assess the risks. While generally safe in autoimmune conditions, etanercept can increase infection risk and has side effects.
- Count the cost. Treatments are expensive and rarely covered by insurance.
- Set expectations. Some people notice rapid change. Others notice a gradual change. Some notice none.
But if you’re considering it, here’s the hard truth: no therapy works without you showing up every day. Etanercept may be a tool. But you are the engine.
Want to see real survivor experiences with etanercept stroke treatment? I’ve collected interviews and recovery updates on my YouTube channel. Watch the Etanercept Stroke Playlist here.
Key Takeaways Etanercept stroke recovery is an emerging, experimental frontier. * Delivered as perispinal etanercept, it aims to reduce brain inflammation and unlock function. * Etanercept stroke clinical trials show promise, but more rigorous studies are needed. * Survivors worldwide — including those searching for an etanercept stroke Australia trial — are watching closely. * Whether through Enbrel, therapy, or pure grit, the principle remains: never quit*.
“Hope is powerful. But hope means nothing without action. Win the day. Stack the small victories. That’s how you fight back after stroke.”
Final WordIf you’re exploring etanercept stroke treatment or any advanced therapy, go in informed. Respect the risks. Know the science. But above all — remember that no drug replaces discipline.
Because in the end, stroke recovery belongs to those who refuse to stop.
DisclaimerThis blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
Wesley Ray: From Hemorrhagic Stroke to Relentless RecoveryThey told him “no hope.” Wesley Ray turned that into fuel, proving stroke recovery is possible with relentless goals and grit.
Hanson Rehab Glove by Syrebo
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Transcript:
Wesley Ray’s Life Before the Stroke
Bill Gasiamis 0:00
Hey there, it’s Bill Gasiamis. Welcome back to the Recovery After Stroke Podcast. First, a huge thank you to my Patreon supporters. Everyone leaving reviews on Spotify and Apple podcasts, YouTube commenters and those who have picked up my book The Unexpected Way That a Stroke Became The Best Thing That Happened.
Bill Gasiamis 0:17
Your support means the world, and it helps keep me sharing stories like the one you’re about to hear now. Sponsoring today’s episode is Banksia Tech, proud distributors of the Hanson Rehab Glove by Syrebo. This isn’t just another therapy tool. It’s a soft robotic glove designed to help stroke survivors retrain hand movement at home.
Bill Gasiamis 0:39
Each finger is supported to open and close, giving you consistent, structured practice, whether you’re fresh out of rehab or years down the track, if you’d like to see how it works, I’ve left a link in the description. Now my guest today is Wesley Ray, a US Army veteran, father of two, and former power lifter whose life was turned upside down by a massive hemorrhagic stroke.
Bill Gasiamis 1:03
Doctors told him there was no hope, but Wesley refused to quit. What followed was a raw fight through setbacks, abandonment and a relentless recovery. In this episode, you’ll hear how Wesley set short, brutal goals to claw his way forward, and how he discovered experimental treatments like etanercept that open new doors stick around. This is one of the most honest and powerful conversations I’ve ever recorded. Wesley Ray, welcome to the podcast.
Wesley Ray 1:32
Thank you.
Bill Gasiamis 1:34
Thank you for being here, mate. Tell me a little bit about what life was like before stroke.
Wesley’s Powerlifting and Military BackgroundWesley Ray 1:41
Before the stroke, I was living like a cheat code, like I was big. I was a power lifter. My wife was a body builder. I had a brand new boat, had multiple cars. I went on vacation every couple weeks. I had a lot of people around me. I was very outgoing and social. And we’re always doing something, it’d be nothing for me to go to go on the boat with 14 or 15 people, and have multiple cars. When we’re going to the beach, were going to Cancun like I was living like a cheat code.
Bill Gasiamis 2:30
Very full on life. Lots to do. So tell me about powerlifting. How long have you been powerlifting?
Wesley Ray 2:42
At that time. I’d been doing it for a long time, as long as I can remember. I waited about 230, 240 at the time, and like I said, my wife was a bodybuilder.
Bill Gasiamis 2:57
And how old were you kids?
Wesley Ray 2:59
They are 10 or 12.
Bill Gasiamis 3:03
And what were you aiming towards back then? What was the idea? I know you were living at large.
Wesley Ray 3:10
I was living, that was it. I was just living. I didn’t really have any, like, big goals, because I had everything I wanted. My kids were good and happy. They did sports. I was strong. I had a good relationship. Me and my wife have been together a long time.
Wesley Ray 3:32
Everything was good I had a good job, better loved and was easy and stress free. Had a good schedule so like I worked nights, or I would type my kids in bed, go to work, come on, get wake them up, get the one bus, take a short nap and and then go to the gym. And they beat the gym until they get off the bus. All I did was take naps. I took a nap at work. I took a nap at home.
Bill Gasiamis 4:03
So you weren’t sleeping.
Wesley Ray 4:06
No, I was just taking naps. Two or three hour nap take a three hour nap and be good to go.
Bill Gasiamis 4:16
They say that everyone should be getting seven to eight hours a night.
Wesley Ray 4:20
No, I never did. I guess if I slept more than because of my military and all that, if I slept more than four hours, I would have dreams and nightmares or whatever. So I get used to sleeping, just taking naps. And it worked for me. I was, it was like a power nap every time.
Bill Gasiamis 4:40
Can I just interrupt you? Are you on your laptop?
Wesley Ray 4:44
Yes, sir.
Bill Gasiamis 4:44
Can you just position your head a little bit further up? Beautiful, perfect. So you also, did you do tours? Did you do tours with the army?
Wesley Ray 5:00
Went to Afghanistan once, a long time ago. I was in the army for one contract, and then I went done that contract, going to Afghanistan, and then came home and got out.
Bill Gasiamis 5:18
Were they combat missions?
Wesley Ray 5:20
Yeah.
Bill Gasiamis 5:21
How long did that last?
Wesley Ray 5:23
I was in Afghanistan for a little over a year.
Bill Gasiamis 5:28
And how old were you then?
Wesley Ray 5:32
21.
Bill Gasiamis 5:34
Okay.
Wesley Ray 5:36
So before head is before I had kids and everything.
Bill Gasiamis 5:40
Yep, understand. And the power lifting, was it just something that you did to release some stress? Was it just to make muscles?
Wesley Ray 5:49
Basically, I just always, I love the gym. I love going to the gym, and I wanted to be the strongest person in every room, so I just, I go to the gym tour. There I was the dead. And I like being strong. I like, I didn’t like CrossFit and like wearing myself out and all that, but I liked lifting heavy.
Bill Gasiamis 6:12
So you were fairly active. You were living large. How was your health? Did you have a sense of what condition body was in even though.
Health and Lifestyle Before the StrokeWesley Ray 6:22
I feel like I was good, like, I was big and strong, I was never sick at that time, I took a lot of steroids and some the VA Give me medicine for my blood pressure, and I just kind of throw it in the cabinet, never opened it or anything, and my blood pressure was really high, and I’d been on storage a really long time, and I never took the medicine so but I felt fun like I never I didn’t have injuries, I didn’t have a cord. I didn’t have I was never sick.
Bill Gasiamis 7:07
And how did you find out about the high blood pressure?
Wesley Ray 7:10
Um, because I was a truck driver, so I had a CDL, so I had to go do, like, physicals and stuff all the time, and anytime I ever went to the doctor for a medicine refill or CDL qualification, whatever they would have to take my blood pressure, and it was always high, always to get qualified, like they would have to turn off the lights, I would have to lay down and They shut my eyes, and they are barely qualified.
Bill Gasiamis 7:42
Wow, and you had no sense of that blood high blood pressure causing any headaches or any other problems.
Wesley Ray 7:49
I had no symptoms of anything.
Bill Gasiamis 7:53
I just recently got diagnosed with high blood pressure, and I get headaches. So as soon as my blood pressure is high, I know exactly that is high.
Wesley Ray 8:02
I never got symptoms of anything. The at home therapist came to the house, and a couple, several times they came to the house after they struck and, like, check my blood, blood pressure, and they’re like, like, we need to climb the ambulance right now. Like, wow, it’s 100 over 100 it’s bad. I was like, I feel fine.
Bill Gasiamis 8:27
Wow, man. So what about on the day of the stroke? Was it a normal day? Everything go well? Did you notice?
Wesley Ray 8:34
So it was when I say Patrick’s Day was much of 2024 so it’s the Saint Patrick Patrick’s day and we had friends coming in town and staying with us to go to our Saint Patrick’s Day party that night. So where people at the house, and I woke up early to go to the barbershop, to get cleaned up for the party and to go to the gym before the party.
Wesley Ray 9:03
And I woke up and did my usual stuff, and I was downstairs, and I just didn’t feel like something felt off. And my daughter, my, my older daughter, my, my 12 year old, she happened to be be the only one awake, and so she came downstairs. I was and I was talking to her, she’s, like, something alright. So she went, got me some, like, cheese and crackers, Tylenol and peanut butter crackers and stuff.
The Stroke and Initial HospitalizationWesley Ray 9:33
And she, she’s the starter of, like, I needed to eat. And so she, like, sat with me and fed me those and then some master got me to the bathroom, and I was in the bathroom floor, and she went upstairs, like, because those people sleep, she went upstairs got her mom. It was like, hey, something’s wrong with dad. I need you. Took him downstairs right now.
Wesley Ray 10:00
Her mom came downstairs and started trying to talk to me, and I didn’t know where I was or anything. I was like, which bathroom in my mind and my upstairs and downstairs and all of that. She was like, okay, something invited and somehow they got me to the truck and they took me to the hospital. In the hospital, like on the way to the hospital, my left side went numb, like, like a dentist, like, numbing my tooth.
Wesley Ray 10:28
Like it was instant. Like, now I got really scared. Then we get to the hospital, and I felt fine. They put me an ambulance took me to a different hospital, but I felt fun. Everything felt fun. And they kept me overnight, and I was talking, I texted my boss and my friends. I was like, Yeah, I’m in the hospital. And then this doctor came in, and they did the contrast scan and all of that, and he was talking to me, and he was like, Okay, this is he was like, you had a TIA mini stroke.
Wesley Ray 11:09
And there’s a spot that we’re kind of worried about, but not sure if the nurses just messed up their contrast, or it’s a rough spot, or whatever he’s Like, but we’re going to look again in six weeks. He’s like, but right now, you’re good to go. And they discharged me and all that. And I called my friends is like, Hey, I’m still coming to the party tonight. I will see our men. They’re like, Dude, you just had a stroke, like you’re in the hospital. I was like, I feel fine.
Bill Gasiamis 11:38
Now let’s talk about something practical. If you’ve ever felt stuck because your hand just won’t do what you want, weak, stiff or curling tight, the Hanson rehab glove by Syrebo might be the solution. Distributed by Banksia Tech. It’s built to give stroke survivors more opportunities to retrain hand function at home, the glove uses soft robotics to guide each finger through exercises, helping to rebuild those brain, hand connections day after day.
Bill Gasiamis 12:06
And the best part, you don’t have to wait for your next therapy session. You can put in the work on your own schedule. Check the link in the description to learn more. All right, back to Wesley in the next part of our conversation, you’ll hear what happened when he decided to try atanercept, and how he changed the way he thought about recovery.
Wesley Ray 12:23
They discharged me, I’m good to go. And I caught somebody else, and I was on the phone with them, talking joking around. My wife is next to me. And I was like, Okay, I’ll talk to you later. And I hung up, and I put the phone in my pocket. They looked at her, and I was, like, I heard this loud ringing sound, and like, everything got, like, weird. I couldn’t tell, like, the one felt like it was sideways and spinning.
Wesley Ray 12:50
And I looked at her, it’s like, something I write. And then I fell back in bed, and I don’t remember a lot over the next couple weeks, or or whatever. Apparently, that’s when they had the major stroke, major stroke, and they said it was a hemorrhagic stroke.
Challenges in Rehabilitation and Family DynamicsWesley Ray 13:11
So I had the TIA, the the mini stroke. They did discharge me. I had the major, major struck now is in ICU for a while, and they they told my wife, the kids, that didn’t think I’d make it, and all of that the doctors have since then, and we’ll get into it, the doctors have left me no hope at all, and they keep coming with this bad like prognosis and all that, they’ve let me know hope.
Bill Gasiamis 13:44
So they wrote you off.
Wesley Ray 13:47
And like, I don’t remember a lot, I got told stories, and I saw a video where I was sedated and handcuffed to the bed because they said anytime was awake and my wife and kids would leave I would hallucinate and get mad, angry, breaking stuff, and bending stuff and ripping out chords and pickle ends and all that. And so they kept having to sedate me and handcuff me to the bed. And so I saw a video of my daughter like playing in the hospital room, and I was behind her, knocked out, handcuffed to the bed, and I don’t remember, none of that.
Bill Gasiamis 14:29
Wow, man, you would have been a handful, especially at your size.
Wesley Ray 14:36
I was huge. And that became a problem, because a couple weeks later, one of the nurses tried to, like, get me to the bathroom, and she dropped me. And so from that point forward, I would push the Help button or whatever, and they’d be like, four or five nurses outside. I’d be like, hey, like, look, we can’t pick you up like well why don’t you get somebody that can. I was like, I need help.
Bill Gasiamis 15:04
I got dropped after surgery. I came out of surgery, I don’t know, within about, maybe within about the first three, four hours, something like that. You know, you come out of recovery. They wake you up, they get you into the the high dependency ward. They’re looking after you, but they want you to go to the toilet. So they get you up.
Bill Gasiamis 15:25
And I couldn’t feel my left side at all, and see I still get really I got out of bed. They got me out of bed on my left side. I put my left leg down the nurse who was trying to hold me. She was very petite, about five foot, something high, you know, not very tall at all. I’m, I’m almost six foot, not, not quite, but kind of there, and probably double her weight. And she said, just put your hand around me, and I’ll help you get to the the toilet.
Bill Gasiamis 15:57
And I put my hand around her, and then I just felt straight on my it was shock, horror. I freaked out. I was on the ground. Everyone rushed. They got me back up into the bed, and they realized, Oh, this guy can’t walk.
Wesley Ray 16:12
See, I’ve only fallen a couple of times. There was that time where the nurse dropped me, and then after that, we went to the beach once. And my, my wife, is trying to guide me on the beach. So I was thinking a couple steps with her hands, and my leg just disappeared in the sand, like the sand just ate my leg, and I just fell over it. It was soft, yeah, so soft. It didn’t hurt.
Wesley Ray 16:37
But I was gonna say that I couldn’t get up, and they weren’t big enough to give me up. So these guys walking by were like, do you want to help? Yes please. And then I was at one fast time. I can’t see left, so I started, I was starting off the bench to stand up or to leave, and I just kept saying, all the way to the floor.
Bill Gasiamis 17:03
So are you able to get on your feet? How does that work?
Wesley Ray 17:08
Yeah, I’ve came a long way, and the attendance have helped a lot. So now I can cut and I’m walking with a cane now, okay, um, it’s ugly, but I can do it. I’ve kind of, in fact, you can see one right behind me. Oh yes, I had a big Walker and went down to, like a Hemi Walker, yep, and then went down for like a whole letter Walker. And now for the last couple weeks, I’ve had a cane.
Bill Gasiamis 17:40
yeah, so you know when you woke up, Wes, what was that like to wake up in hospital, realize what was wrong and how bad things were. How did you?
Wesley Ray 17:51
I remember going to the hospital? Like, I remember all of that so, like, I would wake up and I knew where I was and what happened and all that. Um, but then people tell me stories. I’m like, I don’t remember, none, none of that. Like, they’re like, you picked up the machine and slump it down and started yelling and cussing at it, saying it was a person. I was like, I don’t know.
Bill Gasiamis 18:21
How long did you end up in rehab for?
Wesley’s Determination and Support SystemWesley Ray 18:24
So the first time moved to the hospital, I went, it’s kind of a funny story, but so I went to the hospital, and they took me to an ambulance to another hospital, and they ended up being there for a month, and then they, they kind of sent me home, and I couldn’t do anything, like I couldn’t use the bathroom, I couldn’t feed myself, nothing, so they sent me home.
Wesley Ray 18:55
And my wife, is kind of freaking out, like she didn’t know what to do. No, my, and there happened to be this Stroke Center in Tampa, Florida for the VA. And this right, like, rated, like, the number one stroke center in America. And so we’re trying really hard to get me into that, but the VA kept giving me the runaround and like, your duck, just for this out.
Wesley Ray 19:23
And the ducks are like, I don’t fill that out. And, they’re like, Okay, we’ll look again next week. And, we’d like argue with them. My wife is I can’t, and she’s like, this is a time sensitive thing. And so, like, we followed them for several weeks and then went to the VA for appointment to try and go to the hospital at the stroke center. It’s called source. It was really nice.
Wesley Ray 19:58
And so we got the. Like, Oh, we you have to have an appointment for this, but we can get you in today after two o’clock. And that was, like, four hours away. And I was like, whatever, we’ll wait. Like, and so what the hospital just like trying to cut time.
Wesley Ray 20:17
And we rolled up into a the coffee shop at the hospital, and this guy came on the corner neck ability see him, because I couldn’t see good and so he came up was like, do you do recognize me? I was like, Yeah, a little bit. And it happened to be a guy that I was deployed with in Afghanistan, that I used to live with, um, and he was like, what happened? And my wife told him, because I couldn’t really talk.
Wesley Ray 20:44
And my wife told him, she’s like, we’re trying so hard to get him in this stroke center, but we’ll get in the runway. It’s been several weeks now. And he was like, let me see what I can do. Because, like, I worked at VA. I’ve worked here for like, 20 years, let me see what I can do. And that was, like, a Friday or something.
Wesley Ray 21:06
And the following Wednesday, I was checking in and tip up at the hospital down there to say that was in the hospital for a little over four months. Wow, I got to the hospital. And like they it’s like two of the weeks in, the doctor came in and they did another scan and all that. And like I said at this time, I could be so I couldn’t feed myself.
Wesley Ray 21:35
So I had three goals when we got to the hospital. It was, I want to do stairs, because my bedroom is upstairs and hadn’t been there in a long time. I wanted to be able to feed myself, and I wanted to be able to go to the bathroom. Those are my three goals when I got to that hospital. And so the doctor came, in short, I’ve been there about a week, and they just done a scan and all that.
Wesley Ray 22:02
And the doctor came in with a psychologist and all that was like, okay, like, it’s just something to scan. And she had my wife on video call, and she’s like, Hey, like, you want recovery, you want improve, like, what? And she’s like, I’m sorry to tell you this, and the Doc, and she told me, she’s like, you won’t get better. Like, this is a bad stroke, and what it impacted you won’t improve. And, like I said, I had a lot of disabilities at that time. And so she left, and the psychologist was like, How do you feel? Like, that’s bad news.
Wesley Ray 22:42
How are you taking it? I was like, I’m fine. Like, I have my three goals. I know I can get better than accomplishless. But other people need that hope, like hope is powerful, powerful, and other people need that hope. So it wasn’t for me. Y’all upset other people. And couple days later, I can’t remember, maybe that night, my wife sent me a text message. We’d been together 22 years, she sent me a text message that was like, Hey, I can’t be a caregiver.
Wesley Ray 23:18
Things with your hard and heavy and I want fun and easy. I can’t do this. I want to divorce. Wow. I was like, well, and that’s what I meant by the power of hope.
Bill Gasiamis 23:32
Wow, man, so that’s crazy. Did you see you didn’t see that coming at all?
Wesley Ray 23:38
No, not at all. Like, we’ve been together a long time, so the hospital was like, the doctor was like, there’s no point in you being here, like we’re going to start looking at sending you home, like there’s no point in you being here to rehab. And the pilgrim was called Source. There’s like, stroke, optimal, act optimal, something, rehab center, something, it’s really nice place.
Bill Gasiamis 24:13
Dude, this is making me mad. I’m listening to what you’re saying. It’s making me angry. The part where they tell you there’s no hope. You shouldn’t even be here.
Wesley Ray 24:22
And they’ve done that a couple of times. They did that, like, last month, like, so, so they’re trying to send me home. They’re like, there’s no point in you being here. And one of the physical therapists I can fell in love with, like, I’d see her twice a day, and like, she’d come do extra time with me, and we spent a lot of time together for several months.
Wesley Ray 24:55
And then she got pregnant and had to leave. But like, she was, I told her, I was like, I don’t want to go home. I think I can get better. And so she, like, she put her foot down and would not let me go home. And like, did these tests, and I kept getting better on the test. And then they showed the doctor, know, like, no, must I send him home? Like he’s doing good. He’s getting better. And my numbers were, they were, like, getting a lot better. So me ended up being there that was like, three or four weeks in that ended up being there three or four or four months after that.
Bill Gasiamis 25:41
I want to try understand your mindset, right? So a you’re somebody who’s been deployed, you’ve seen action, You’re a big guy, you’re a tough guy, you go to the gym, you sleep three or four hours per little shift. You’re raising a family. You’ve got kids. You’re partying hard.
Wesley Ray 26:04
I got two girls. I’m a great girl, Dad, because I didn’t hunt, I don’t fish, but I like hugs and kisses. I love being a girl Dad.
Bill Gasiamis 26:15
You’ve got everything going for you. You have a stroke, everything’s taken away, and then people are not interested in helping you, and telling you, you shouldn’t even be here, and then your wife leaves you. How do you develop the mindset to push through all of the drama and all of the problems that you’re faced with in such a short amount of time.
Wesley’s Fight: Therapy, Recovery, and Facing Divorce AloneWesley Ray 26:43
Basically, I was just trying to stay busy and get to bed and wake up the next day and just trying to win the day. So I would go, like, I would volunteer for extra, extra physical therapy. So like, I would go in the morning, and they would come get me a lunch and all of that. And I love the physical therapy, but I’ve always loved it because I like the gym and all that.
Wesley Ray 27:09
Yes. So I’ve go to all these therapies, like occupational therapy, speech therapy, physical therapy, all these therapies, vision therapy, and that hospital had their direct recreational therapy, all that music therapy, so I was pretty busy to what they did. So I go to all these therapies for 6, 7, 8, hours, and then come back to my hospital room and look at my phone, and it’s like, my wife telling me that she can’t do this. She wants a divorce, and I’m at the hospital all alone, and, like, it’s sucked. So I go work as hard as I could, come back and, like, look at my phone, and it just crushed me.
Bill Gasiamis 28:01
Yeah, and did you guys have previous any challenges, any marital problems, anything like that that you’re aware of?
Wesley Ray 28:09
No.
Bill Gasiamis 28:10
Yeah, wow, man, look at stroke is really hard. A lot of people who care for people who had a stroke can’t do it, and it’s it’s not something that we can describe or understand or explain. You would say, I would never do that to her. You know, all that kind of stuff we would never know. I know it’s a difficult thing to hear and go through, but you don’t know how you would respond to something that you’ve never been through before.
Bill Gasiamis 28:36
And I’m not saying because I’m not saying that, that I’m 100% certain that I would hang around either, like, I hate saying that. I it even bothers me that it comes out of my mouth, but there’s got to be a part in everybody that just wants to check out and go. Now, this is too hard. I can’t do this. And I think it’s that emotion.
Wesley Ray 28:57
I’m different, I guess. But yeah, I would see it as a challenge, like, we’re going to get through this. Yeah, the challenge is this, the goal is this. We’re going to beat this.
Bill Gasiamis 29:07
But Emotionally, I think that some people, emotionally can’t do that hard work because they must have other emotional issues.
Wesley Ray 29:14
That’s why I blame other issues. They’ve they’ve left no hope, yeah, and like, so at first she’s getting told I won’t make it, and then she getting told I won’t recover, and all that. And then, like I said, they did it again a month ago.
Bill Gasiamis 29:32
I don’t blame you for blaming the doctors, because that’s a disgusting thing to say to anybody. I just don’t understand. Well, I don’t know why.
Wesley Ray 29:41
They would explain the doctors a little bit her living was, of course, that was going to happen, I guess.
Bill Gasiamis 29:47
like at some stage.
Wesley Ray 29:50
Like the priorities now are way different, like after, after this, or the experiences taught me, like, I. Because I was gone, almost died. I was by myself a long time and all that. I just want my kids. I don’t want to be alone. I want my kids all the time, like it’s unhealthy. How much I want need them here, yeah, and with her, she’s experienced something else she had to be she’s going through something else.
Wesley Ray 30:24
I was alone. She had to be there for the kids. She had to take care of everything. And so now she wants to, like, be single and fun and party and all of that. My property is the family, and the kids, hers is something else, but they still cause two different experiences.
Bill Gasiamis 30:47
And you know what it does to caregivers, it also does the other thing it does the life’s short. I’ve probably got things I want to do. What if this happens to me? And then what am I going to do then?
Wesley Ray 30:58
Very much like one of the really bad conversations that we had, like it was okay between us, but I messed up at the hospital being alone, and I googled the life expectancy after the stroke for the type I had, and all of that there was, like 24% or 33% or, I think it was 24 it’s 24% of people survive. Of those 24% 33% make it to one year. I was like this, such I said that that looked at that.
Bill Gasiamis 31:37
Yeah, I agree. I agree. Hemorrhagic streak is such a shit stroke to have, man, I know it does cause a lot more death in hemorrhagic stroke than in ischemic stroke. And yeah, I discovered those stats a few years, quite a few years later. So I’m very thankful, very grateful for being here.
Wesley Ray 31:57
I was in the hospital looking at that like, Why did I look at this? Yeah, why did I look this up? Like, this does not help at all.
Bill Gasiamis 32:08
So you had a couple of things go your way. One was that your former army buddy who came and helped out. So that was.
Wesley Ray 32:18
Just happened to see a metric officer, yeah, didn’t even know he worked there, but, but he was able, like I said, Whatever he did, I was in the hospital four or five days later.
Bill Gasiamis 32:30
Yeah, blessing. That’s a blessing and a half. Yeah. And then what about your military training? Do you think that had a lot to do with the way you’ve recovered, bounce back approach this.
Wesley Ray 32:45
I don’t know. Maybe I don’t really look at it like that. So for me, it’s just I had these goals. I know I can do it like the it was either try to win the day and go to bed and do it again the next day and look, look for something to look forward to, like going home seeing my kids, whatever like right now, my goal is want to be able to do 20 Push Ups by the kids fall back. And I tried yesterday I could do 11. Wow. This is a big difference. Kiernan used to do like 150 but because that’s big, yeah, I went from benching mid force to like, 10 pounds on their machine. So it’s a big difference.
Bill Gasiamis 33:43
That’s where you started all those years ago. Yeah, wow, man. And then you met this other amazing person in hospital who went.
Wesley Ray 33:56
They were about to send me home at one point, and they’ll like, we want you to stay another four weeks. And she’s like, if I think I can have you, like, almost walking in that four weeks, wow. It’s like, okay, I’ll say, just because you and she, she got pregnant and left and wouldn’t have the baby, and the next opportunity I had to go home because she wasn’t there anymore, I took it and went home.
Bill Gasiamis 34:29
Yep, fair enough.
Wesley Ray 34:31
They were trying to get me to stay at that point, because you’re doing so good, like, want you to stay. And they, they’re like, a long term program they’re going to put me in and I was like, No, I want to go home like I miss my kids. I don’t have a wife anymore. I guess I want to go home. I want to be in my bed, like in my house, my life, all of that.
Bill Gasiamis 34:55
Did you have any parting words for the doctors who said that there’s no hope for you? Did you. Did you find them and tell them that.
Wesley’s Determination: Defying the Odds Through Rehab and ResilienceWesley Ray 35:02
They were willing, and so I was talking to the doctor, and they were like, tell me no. And I was like, Look, I’m doing all I can to get better. Like I’m if I don’t have the kids and I don’t have physical therapy, I’m walking using the big Walker, like there’s a gym half a mile away. I’m walking that 25 minutes to the gym just just to be there.
Wesley Ray 36:08
And the doctor was like, Well, that’s good that you’re going to the gym and all of that, but you need to understand you’re wasting your time. Your brain is not using the muscle pathways to build muscle anymore. She’s like, so you’re going to the gym is good and great, but, like, it’s not helping. I was like, would you even say that to me? Like, what? What is that even matter? It’s good in my head.
Bill Gasiamis 36:38
It’s a load of bullshit. It helps a lot, even if you’re not making muscle, because it’s not about the muscle, it’s still firing neurons all over the place. It’s connecting your body to your brain, your legs, everything.
Wesley Ray 36:50
Exactly. And I like being there. It’s good for my head. It’s good for my mental. It passes the time. So I go to the gym, I come home and the kids are back from school, yeah, or if, if it’s because we do week on, week off. Now, if it’s the week that they’re here, okay, I go to the gym when I come back, that day is gone. All I have to do is go to sleep and do it a couple more times, and the kids are back like.
Bill Gasiamis 37:19
Physical therapy is so important.
Wesley Ray 37:22
That same mindset. She’s like, it’s not helping you. You’re wasting your time with that mindset. Why am I even going to physical therapy? Like, yeah, obviously, I’ve been going, and I’ve been I’ve been doing extra, and I’m it’s helping, it’s working, and you’re telling me it’s not gonna help. It’s not gonna work. I don’t know.
Bill Gasiamis 37:43
Did these guys impact your mental health? Like, did they make you feel really down, or anything like that.
Wesley Ray 37:49
The doctors didn’t okay. The doctors would say that. And I’m like, You’re full of like, I don’t believe you. I know I’m getting better. I can feel it. I can see it, I can tell by people looking at me more important, like I said, it wastes the day. I’m winning the day. Yeah, I love them. So the doctors didn’t really bother me. They bothered the people around me that needed to hear something positive, but they didn’t really bother me.
Bill Gasiamis 38:21
Yeah, that’s the thing. You know, the people around you, I found myself in a similar situation where a lot of my job when I was recovering was to do the work so that everyone who came to visit me and saw me could see improvement and recovery and they could be okay.
Wesley Ray 38:38
Exactly if they weren’t in the barbershop a couple days ago. And so I was kind of famous at the barber shop, before the barbershop, before this truck. They all knew me from a certain event and and so they saw when I was really big, and they saw me coming in wheelchair, and then they saw me come in, and they up Walker. Then they saw me come in with the other Walker. And so couple days ago, Thursday, they will, they saw me come in with just the cannon. The guys like, Dude, this is crazy. Yeah. And like, those compliments kept me going, keep me going.
Wesley Ray 39:24
The good to you. It’s good to hear when other people notice you’re doing something, yeah. Like I took my took my daughter. We I live in a good area where everything is close by and we can walk to a lot of places. So this art studio, so me and my daughter walked to the art studio. She could paint and do all that, and walked in the art studio, and the lady was like “You came in here in February with a big ass Walker. And like, now looking at you like you came. Long way I can accept the liquidity you’re going to the gym, then you’re using a cane, like you’re not shaky”
Wesley Ray 40:09
And then mentally, especially the gym part, because I was like, the last the last thing hurt, but the gym was, it’s not going to help. So her saying she could tell I’m going to the gym without me saying anything. I was like, okay, good. It is okay.
Bill Gasiamis 40:26
Your instincts are guiding you really well.
Wesley Ray 40:30
The other alternative is to stop it’s too quick.
Bill Gasiamis 40:35
And then to just curl up in a ball and go into the corner and then just end it all. Exactly, yeah, no point.
Family Fuel: Kids, Therapy, and Small WinsWesley Ray 40:43
And my kids, my kids need, need me as much as I need them so. And they’ve been very, very helpful. Yeah, they got to, like, in the first hospital, they got to, like, come to a therapist with me. Is it my oldest daughter wants to be an occupational therapist now. And she thought that was, like, great. She’s been to physical therapy with me here a couple times, and she loves it. Like, not, not so long ago that they took my walker and put it in the kitchen. And they’re like, you can, you can get to the kitchen without it. I was like, No, I can’t, like, give me the walker, stop playing.
Wesley Ray 41:31
Well, I know, seriously, get the walker and what. She’s like, hey, I want to see you push the basket without the worker. And I was like, you know, I can’t do that. She’s like, we’ll go slow. If you fall, we’ll both fall, we’ll both get hurt, but I’ll do my best, right? And I was able to push the quarter one target. Wow, man. How old is this kid? What led me to the one letter worker. Because I was like, okay, I can do this. How old is this kid? She’s 12. That’s amazing. They’re 10 or 12 in the 12 year old, it pushes me a lot. It helps me a lot. The 10 year old is very sweet.
Bill Gasiamis 42:19
Yeah, that’s good, too. That’s amazing, man. So you know, a little earlier, you said that you asked for help. You needed help. What? What kind of help did you need that you asked for?
Wesley Ray 42:32
Well, at invested these times for different things, but at that time I was trying to get, get them to give me some sort of a testosterone replacement therapy, because before the stroke, obviously I took steroids, so my numbers were super high, and then I had this stroke, and they cut me off court. They should have not complaining, yeah. But they cut me off cold, and so that kind of shocked my system into, like, now recovering and a lot of things going with testosterone, other than the muscle, like, it gives you energy and improves your mood. It makes you not get sick.
Wesley Ray 43:13
All of that, it makes, makes you more confident. And all like I wanted the testosterone for, for more than mental stuff. Like, I wanted to be confident. I wanted to feel better, like, so I was like, please. And they, they tested my testosterone in Tampa, and it was like, so before this truck, it was like, over 3000 it was high through the roof. I took a lot of storage suicide seven months or whatever, after this drug, my testosterone level was 108, which is super low.
Bill Gasiamis 43:54
Not healthy low for a man.
Wesley Ray 43:57
And especially when you’re trying to recover and improve and that you have, like, this number, whatever, and that directly affects improving the recovery. Yep. So I was like, hey, look, I’m not trying to, like, take steroids and burn muscle and all that. I’m just trying to, like, improve my head. Really, like, improve my confidence.
Bill Gasiamis 44:23
Yeah, improve my mood, yeah, it probably would have been appropriate in your situation, simply because the your body is so used to receiving testosterone, it doesn’t make as much testosterone as it may have if you hadn’t been taken over.
Wesley Ray 44:40
Trying to get back up to, like, low normal, low normal. Like, yeah, they said no. Like, no. Like, when I didn’t give the testosterone to build muscle, it’s like, I’m not trying to build muscle. Like, I was like, I’m I’m going to the gym. Like this. Now we’re in trying to. Food, yeah, rehab. They’re like, Oh, it’s good to go into the gym, but yeah, it would help.
Bill Gasiamis 45:06
Yeah, fair enough. And were you, how many years were you on testosterone? And were you cycling through? Did you have down times?
Wesley Ray 45:15
I cycled a few times, but I was not testosterone a long time. I think at that time, it had been well over a year, maybe two years, since I came off of it. But I loved it. I was addicted to it.
Bill Gasiamis 45:34
Made you feel invincible, tough, strong.
Wesley Ray 45:38
It made me just a better person, because I was so strong and so confident and so happy and all that all the time, like people are in a bad mood, they’re usually sick or tired or hungry. That’s so strong made me eat better anymore. So it’s never hungry. It made my sleep better, and it gave me more energy, so it never tired, and they helped my immune system, so it’s never sick. So I I was in a good mood all the time.
Bill Gasiamis 46:11
Yeah, understand. Okay, wow, so you have a stroke. Everything goes to ship. People that should be saying, everything will be okay. We’ll offer you some hope. We’re not offering you hope. Your wife leaves you your children. Step up, your 12 year old, steps up, your nurse, steps up, your buddy from the army. Days you hear you bump into steps up.
Wesley Ray 46:42
And I’ve never talked to him again. I don’t have his number or anything because I couldn’t use the phone, I couldn’t text or talk or whatever, like, I had to win on everything. So I never talked to him again. My wife talked to him. He got us in the hospital, and I’ve never talked to him again.
Bill Gasiamis 47:00
Wow. That’s just amazing. Did it even happen? Is it just an imagination thing? What is that? How is that?
Wesley Ray 47:09
I saw him, I remember before I checked in, my wife sent my sent him my thank you message. It was like, hey, we’ll check in. Thank you so much. And like she’s talking to him, but I wasn’t.
Bill Gasiamis 47:23
Wow, I love it. And then at some point you hear about or you learn about etanercept.
Wesley Ray 47:31
So, obviously, I was in the hospital on Tampa a long time by myself. So I just look at things and Google things like life expectancy. And so I started watching all these videos, and that’s why I found your podcast and all that, and I found Paris final eternal set. And so it’s like, okay, like my goals when they get back, or I want to get the eternal set, and then I want to get some stem cells, and then I want to buy a Tesla, because I can’t drive. So I went to buy, I love it. I love it. I was like, those are my goals. I want to get home.
Wesley Ray 48:14
So I got home from the hospital, and that’s what I did, so I get home in September, I saved up, or the end of September, I sent up as much money as I could. Obviously, there was like I had to move houses and vehicles. Could repossess and all that because of my wife leaving and all that and so. But I sent those money. So in January, I went to buckletown for the press panel, a tenor set, and got two doses down there. And it was great. It helped a lot.
Wesley Ray 48:54
And we can talk about that, yeah. And then at the right after Fourth of July, I got this stem cells. I haven’t figured anything from them yet, but they said it takes, takes a while. So I got this stem cells July 7, and then I bothered about a Tesla two weeks or two, or two weeks ago.
Bill Gasiamis 49:17
Okay, so you went to Boca Raton. You? You met the team. You met Dr tobinick. What are they like? How are they?
Vision Restored, Hope RenewedWesley Ray 49:27
So you can go Dr. Tobernik was nurse. Obviously, everyone picks up Dr. Tobernik, so I picked the nurse just to get in sooner. And so we went there. My mom drove me down there. Obviously it cost, what it cost, which is not unreasonable. It’s not like a you have to save up for it. It’s like, yeah, 8000 a shot. At the time. It was more than 8000 our shot at the time. And so I got down there, and it’s kind of like an assembly line, but so we showed up, and there’s this couple, and so we sat there when the wedding room, and there’s this couple, and they’re from Sweden.
Wesley Ray 50:21
And they’re like, this is a fourth, fourth shot. They’re like, and they started telling us about their shots. And, like, before the first shot he can walk to he was in a wheelchair. So we came and took one shot and the second then we came back. And we stayed for a month because of him, Sweden. So like, we stayed for a month and got this second and third, and now your letter will hear during the fourth. And like, obviously the guy started issues. But, like, he got up, he walked in, took this shot.
Wesley Ray 50:59
And so that was, like a big confidence boost. Like, okay, they’ve had four because for a long time, like, watching your podcast and all that, and watching videos and reading reviews and comments and all of that, it’s always, you always see the first dose. Like, if you watch videos, it’s like he got his first dose every Tennyson, and then like, you people and like, so the second and third does my okay. What can like? Maybe I should just get one. I’m not seeing anybody like getting anything from the second and third one.
Wesley Ray 51:38
Nobody really talks about the second and third one, the improvements come off the first one, mainly, so almost like, it’s a lot of money. I was like, I almost wanted to save the money and only get one shot. And then I was like, No, I will always think about, like, what would happen if I got the second one. And so we went down there and they did all this testing, like, make you draw, draw something, make you do math, look at numbers. And my vision and my field cut were really bad at that time, like I kept walking to the girl’s bathroom because my brain would black out the W and the O.
Wesley Ray 52:23
So all, all I would see is men or not see the left of anything like, like, if I’m watching in a wood show and two people came, came up to the bottom, I’d only see the person on the nasty person on the left. If I tried to read a block off, like the first few numbers or first few letters or whatever, like, it was really bad. My my vision was, is the left side of both my eyes so all I could see. I had a right blue fuel kind of but I could not see left at all. I could basically only see sugar head and they didn’t. It was like, there was no, like, black spot, or didn’t know, blur.
Wesley Ray 53:08
There was nothing telling me to, like, scan and look, I wish there was, because then I would know, like, oh, this the end. No, it was just like, it looked good to me. So after the first shot, so they gave me the first shot and did the testing. And like, I could barely hold the band mom, because the film feeling on my left side is is was gone at the time, and my right side shook. So it’s kind of like it’s bad the way, either I can’t feel the left and I can’t see the left to know what it’s doing or what it is like, if you tried to shake my hand, I wouldn’t be able to see your hand, but you have to look at your hand.
Wesley Ray 53:56
I had no peripheral vision from that side. So they give me the shot. Well, they had me do all the tests, and I couldn’t. I could barely hold the pen, like it was just like, Mark, Mark, Mark. Like, terrible. And mentally I was fine, like I could read November the math, and I could pass all the testing at the hospitals and all of that, like my memory and like smarts was still there, but so they give me the first shot, and I couldn’t really, of course, like anybody I’m there hoping to walk again. That’s what I’m there for, hoping to be able to walk.
Wesley Ray 54:41
So they give me the first shot, and I sat up, and they come over to give me orange orange juice. And I reached out. Got to go and choose one with one hand and drink it. Where it was taking me two hands to drink anything, because I shook so much so like I couldn’t feel. The left so I’d hold the things in my right hand, but my right hand would shake too much, so I had to hold it with my left hand to keep it from shaking. It’s just, it’s like this whole process. So they came up and they gave me the one. She set me up, and I drink it with one hand.
Wesley Ray 55:19
And then it started talking, and the nurse looked at my mom, and my mom looked at the nurse, and they were like, your voice is way better now. Like, we can understand what you’re saying, and I can, I can’t really hear myself, like, I know if I mess up my word, but like, I don’t have volume control. So I was like, Okay, well, that’s good, like, so that told me that, like, they’re talking with, like, your voice got a lot better. And then my mom walked behind me to, like, to a different table and skim up on my left side. I was like, I could, I could kind of see you.
Breakthrough DoseWesley Ray 56:01
It’s just like, where and like, so like, we’ve kind of like, tested how far I could see her, and I was like, I can kind of see you. Mm, hmm. And so my vision got a lot better. I can now read and see the like, the bathroom signs and stuff like that. I don’t block off the front, front letters anymore of the words or the numbers or whatever. I still don’t have a good free fuel on that side, but my vision came in a lot, and my voice changed. So honestly, I was kind of disappointed, though, because as I left, and my mom was like, Oh, that’s great. Like, you can see better, you can talk better, all of that.
Wesley Ray 56:51
And I was like, Yeah, but I was hoping for the like, be more physical, like, be able to walk and not shake as much. And I want, I wanted to see the physical stuff. Like, seeing and talking is cool, but like, in my heart, I wanted to get better that way. Like, yeah, because there’s a lot of stuff. Like, I was like, I would never get to do that now, like, I’m a girl, girl that I was like, I would never get to walk my kids down the get to order, baby, because I can’t use my left hand.
Bill Gasiamis 57:28
You started to get a little bit negative, yeah.
Wesley Ray 57:32
And so I was like, Well, it’s kind of sucks. And I was disappointed, really. And we stayed in Bogota for like, a week, because you had to have a week on the first shot to the second shot. So we just stayed then, then went to Key West and had a little vacation and all that. And I went back to the second shot. So before the first shot, they tested my my hand grip, and it was bad. On my left hand, it was like 8.2 something. So they tested it again before the second shot, and it was like 38 point something. Like it, it tripled what it was. And like it, got it a lot better.
Wesley Ray 58:19
And so then they gave me the second shot, and they took me upside down and all that. And I, I got up, and I was like. I was like, I don’t feel anything. And the nurse was like, see if take a couple laps on the room, like with the with the can or all that. It’s a It’s funny, there’s, you’ve seen the videos. The nurses aren’t very big. So like, I’m like, if I fall this the way, y’all are going to catch me. Like, especially doing what y’all are doing. Like, no, like, Y’all are there for video purposes. That’s it. I was making a lap around the room, and then I kind of just handed there’s a big game.
Wesley Ray 59:08
It’s like a big card game. I just handed it to the nurse, and they walked around the room with nothing, with nothing. And I never done that before. Wow. And my mom is recording, and she like, Oh my God. Like, this is crazy. And I think I sent you the video, um, and so I was like, I felt like it to me. I felt like I was Bambi, like in my head, like feeling it, nothing felt stable. I felt like Bambi, like everyone could see me struggling. And then she showed me the video, video, and I was like, I didn’t look bad at all. Like, I look like a normal person just walking around.
Wesley Ray 59:53
It was a big, big shot for me, because, like, is it? I felt like, Baby, like everyone was going to notice. And see and make a big deal and like, I didn’t look good, but so walked around the room. And so we’ve came, I’ve came home since then, and it just helped a lot. And I can it feels like it helped my I don’t. And my daughter said this, she’s, like, a massive it helped as much as it gave you confidence and like.
Wesley Ray 1:00:28
So now you can just, like, stand up and walk around and, like, he been through this now, like, so now I can, pretty much, I don’t, like, in my apartment, I don’t use a can or anything. I can walk around without it in public because of the ground.
Bill Gasiamis 1:00:48
Different surfaces.
Wesley Ray 1:00:50
That mess with me a lot. So, like, I don’t have the confidence to go out like that, okay, because declines definitely bothered me.
Bill Gasiamis 1:00:59
So it caused the it caused the physical improvement, but also a a personal kind of confidence improve all as well. So you have the combined improvement there, and that’s good, because that means you can try something you haven’t tried before, and then you can rehabilitate that thing that you’ve been afraid to rehabilitate.
Wesley Ray 1:01:22
Well and before the before the shot like my physical therapist, my opposition therapist, took a video of me doing all these exercises, and then when I get back, she redid the mulligan video and made it a side by side, showing like before 10, it turns it after 10, Recep and they looked way better on the second one, like it wasn’t so jerky and wasn’t so shaky.
Bill Gasiamis 1:01:51
When you’re there, do you come across other patients at the same time? Do you sit in the same waiting rooms, or anything?
Wesley Ray 1:01:59
So when you first get there, the office is kind of small, so you don’t see anybody in the office. Like, they bring you in, you bed, they watch you to the back, they give you a shot. You leave outside the office, like in the main lobby of like, it’s a big building. So there’s other business, businesses. But that’s why I met the couple from Sweden, though I had just got sit out there fill out this paperwork. And so I filled out the paperwork, and they were like, would you for this? I was like, Yes. Like, this is our fourth time, so we get to talk for a second.
Bill Gasiamis 1:02:39
You did talk to a few people. Okay, so your results were positive, but you also saw the negative results in other people on YouTube, I imagine comments that people said it didn’t work, or that to scam.
Wesley Ray 1:02:55
And they say that they’re like, we, before they schedule you, they said that they’re like, hey, like, this helps everyone differently, right? But they told me that, like, when I talked to them about the deficits, they were like, we’ve seen improvements and a lot of that, like, but we can’t promise you anything. It’s stem cells was kind of the same thing. They’re like, there’s a good chance you see nothing, okay, but there’s a good chance that helps.
Vision – Voice – PatienceBill Gasiamis 1:03:27
So you feel like you’re very informed when you go in there. There’s no pretending that you’re definitely going to get a result, that you’ll be 100% after this, and there’s none of that. It’s very transparent that it may not work.
Wesley Ray 1:03:40
And let’s be honest, like, if you’re looking at that as an option, you’ve probably obsessed over and then you research and watch videos. It’s not like a impulse thing of you stopping at McDonald’s to get ice cream, like, like, beforehand. You know what you’re going into beforehand?
Bill Gasiamis 1:04:05
Yeah. What a journey, man, looking back, how have you changed? Well, clearly not. We’re not talking about physically now. But what about you as a person, emotionally and mentally?
Wesley Ray 1:04:21
I’m definitely way more patient, and I’m because of the patience, like I have to be nicer. I can’t get upset. I can’t let things bother me. For one, if I do, my hands will start shaking really bad, but because I have to do everything so slow now and talk so slow, and all of that, I became way more patient, and that I used to be a fighter. I would fight all the time. I can’t do that now. I physically I can’t fight. So it’s like, Why send anything at all? Why get upset? Why. Get mad when I can’t really even do that anymore.
Bill Gasiamis 1:05:04
No, you have to be a lover.
Wesley Ray 1:05:07
Exactly.
Bill Gasiamis 1:05:09
That’s good, man. That’s good. So you you were strong, right? Muscular, physically, you could push through anything. What strengths, internal strengths did you find that you didn’t know that you had.
Wesley Ray 1:05:26
I’ve always kind of been a cool person, like, now, like, long term goals, but like, what’s the next thing I can do? What’s the next thing I can look forward to? So it was for a while. Was okay. I want to, I want to be able to walk and want to, I want to be able to do the stairs. I want to be able to feed myself. Want to be able to go to the bathroom. Then it was okay. I want to be able to, I want to do a 10% and then it was okay, I want to get a Tesla.
Wesley Ray 1:06:07
So I always had something to look forward to, and always had a deadline. So I announced I want to be able to do 20 push ups by October 5 my kids spring break, because I’m taking them to the beach and I want to be able to do Tony push ups. So that’s my goal now, yeah.
Bill Gasiamis 1:06:31
So it’s a lot of just doing what always worked for you in the past, continuing to do the things that worked, because they seem to somehow get you there. Having the goal is a massive thing, like just even if you don’t reach it by the deadline, having the goal is huge, because somehow everything seems to line up to start getting you working towards that goal.
Wesley Ray 1:06:55
Well, you don’t reach it when that time comes to try hard, harder, or at least I try harder, if I might, hey, I want to get 15 of this by Monday, and Monday comes, I might admit 13. Okay, how fast can I get to 15? I If I push really hard, I get to 15 by Wednesday. Okay, I hear you.
Bill Gasiamis 1:07:19
Yeah, good. So previously, you would have defined yourself as successful, I would imagine and happy.
Wesley Ray 1:07:27
Before the show, outgoing and social.
Bill Gasiamis 1:07:30
Yeah. How would you define yourself now?
Wesley Ray 1:07:33
Bridge struck, I had tons of people around me. Like, there’d be eight or nine people around me, like, at all times I went, I went on vacation, there’d be six, 810, of us going on vacation. I went to Disney World Two years ago, and I took my kids, my wife, my friend, her kids. Like I took I took my friends kids, and we all went to Disney World. Like, everything was a big group. I wanted everything to be a story, a memory, that you could tell and make.
Wesley Ray 1:08:10
Like, yeah, I didn’t care about the money. Like, okay, you want to bring your friend that’ll help you have good time. Okay, cool. Yeah. I will figure out a way to make it work.
Bill Gasiamis 1:08:24
How do you define that? Now, that type of you know, what makes you happy? Now? How do you define success?
Wesley Ray 1:08:31
Now, just trying to give as much time and be make the time go by as fast as possible, until my kids come back home school for the day. I’m like, Okay, it’s 11 o’clock, okay. I could go to the gym and blame my phone until 230 and then they’re home. Yeah, they come back on a Sunday night, Sunday so I’m like, Okay, I’m going to the bonus up on Thursday.
Wesley Ray 1:09:06
I’m going Thursday night, I’m going to see my old the people I used to work with. I haven’t been there in a long time. Friday, I have depart a Friday avatar appointment in the morning, then the podcast with you. Saturday, I plans to go do something. So it’s like, every day I’m just trying to, like, pass the day, yeah, so they come back.
Bill Gasiamis 1:09:29
But the circle is smaller now. There’s less people hanging around.
Wesley Ray 1:09:33
99% of people you I never saw again, like my best friend at the time, like he was always out of town with us. He he’d be boring cars. He’d stayed my house, like I remember when I went to Mexico, he stayed in my house with my kids to watch my kids, like he was always there. And then I had this truck and never saw him again. I was. Start to him, like, a year after a year, I was like, Dude, what happened?
Wesley Ray 1:10:05
And he was like, I have nothing to it’s all up, but I have nothing to offer. Offered you. I was like, I have no clue what that means. And so 99% of people disappeared, and the 1% that didn’t you would have never thought, Yeah, interesting.
Bill Gasiamis 1:10:25
That’s such a common so like the experience.
Wesley Ray 1:10:29
The friend that took the daughter to Disneyland a year or two, a couple years ago, they live a couple hours away. They’re not close, but since, since the struck, they’ve they’ve came and saw me a bunch of times. They came to the hospital a couple times me, and the one guy, he just came pick me up and took took me to Memphis for the night so we can see comedy show, and went to a casino, and all of that, like certain people have stepped up a lot, but it’s not the one George would have thought.
Bill Gasiamis 1:11:07
That’s always the way, always the way.
Wesley Ray 1:11:09
I thought my wife would be on this journey with me, would go through this together, yeah? She’s like, it’s too much.
Bill Gasiamis 1:11:18
Yeah, fair enough understand.
Wesley Ray 1:11:22
But you would you mess with you, because people are like you saw him. It’s too much. You’re too much like going places after the first hospital, I never got to go nowhere. Yeah, I was also it’s too much to take you out of the house. It’s too much for you to go now, so, as always, at home, book for months of and didn’t really go anywhere. And I remember it being around Halloween, and we went to a pumpkin patch and and she let me go, and I thought that they weren’t going like I got to the carpet, easy.
Wesley Ray 1:12:04
I got back easy. Like the Witcher on the gravel rocks was kind of hard for them, but because I couldn’t propel, because of my hand, I can’t I can’t propel, um, but I thought, like we had fun. The kids had a blast. I got to be included. I was really happy. We got home and I was like, I love today. Like, and she was like, today sucked. It was too much. I was like, damn.
Bill Gasiamis 1:12:37
Right, right, right, yeah.
Wesley Ray 1:12:39
So you get that in your head that you’re too much, you can’t go anywhere.
Bill Gasiamis 1:12:43
Yeah, you’re a burden.
Wesley Ray 1:12:47
Yeah, understand. It’s kind of like my little brother. He came randomly. He was like, hey, I’ll be there tomorrow. They just bought a Tesla, and so drove to the house. It was like, Let’s go somewhere. And I was telling him, I was like, I can’t. It’s too much for me to go anywhere. Like, I can’t. It’s like, Dude, I will pick you up and kill you outside and put you in the garden. We’re going somewhere. And so I remember we we got an escort. It’s really easy to go out there and get in this car. We’re getting this car. And all we did was go to Chick fil A, you know, and went to Walker.
Wesley Ray 1:13:29
And she bought me, like, deodorant and stuff. And just like, he’s like, here’s some snacks, here’s some candy. He’s he’s like, and the whole time, like he did this self driving the Tesla the old time, and never touching anything. He’s like, Dude, you can do this. You can do this. And he’s like, it’s not hard to take you anywhere, like, you legit walked out to the car with the walker.
Wesley Ray 1:13:57
All I had to do was pick the walker a bit folded up. Like, yeah, it’s not you’re not hard, it’s not bad. Yeah, that would have been the next day he took me to physical therapy and all that. And so then I started saying, like, okay, maybe, maybe it’s not so bad. Maybe it’s nice too hard.
Bill Gasiamis 1:14:18
Yeah, that’s good, man. That’s a a good contrast that you needed by the right person, and looks like the right person came along at the right time. Stroke affects everybody, obviously, not just the person who had the stroke. And you learn about other people so much when you in a very difficult situation and people have to make a decision, do they step up, or do they, you know, step back? You know, you know what happens. You really learn about people. And it’s kind of good that it teaches you about what’s deeply inside of people.
Bill Gasiamis 1:14:58
It comes to the surface and. The ones who were all good around for the good times only, they really get worked out really quickly so you can move on. You could just let that lesson come and then move on.
Strength Without BurdenWesley Ray 1:15:15
Like I said, I learned really quick, like I took the gets to Chicago for Christmas, and let them do all the tourist things and pretty much whatever they wanted to do. I let them do and, like, it was costing a lot every day, like, a whole lot, but I was like, okay, like, I can go to the bathroom by myself. I go to bed like a lot of things in Chicago were multiple level. As I can go up the stairs, I could go to the ice cream Museum. Yep, I can walk. I can do the museum like I’m not restricting us is helping us from anything. Then use the Witcher till the last day, because they forgot me.
Wesley Ray 1:16:04
I didn’t have medicine for that day. He got lost or something. So when the medicine worked, like, I couldn’t really do anything at that point, but, but I, like, I didn’t ask for, will they get any help? So I was like, okay, good. Like, I didn’t hold anybody back. It wasn’t a burden. Nobody had to help me, yeah. Like, it’s all good. Like, to me, I we had a blast. We would went to the slime Museum, went to the ice cream museum. We did all these things. We saw all the things in Chicago you’re supposed to see like, the big bean and the bull and all that, and like, they would get home.
Wesley Ray 1:16:50
And I’m talking about, I was like, like, I think I did really good. And my daughter was like, You did great. You did awesome. And my ex wife is like, I didn’t have fun. She’s like, it was too much. You walk up and putting a walker in the car. It got heavy after a while, I had to do other driving because you can’t drive. And I was just like, like, I thought I did good. Wow.
Bill Gasiamis 1:17:22
Talk about making it about her instead of you, like for that time, because most of the time she doesn’t spend with you, so you could have been, all right, all right, to kind of put her stuff on pause for a little while, just to make the exact family experience Okay, to make it about the kids.
Wesley Ray 1:17:39
And then it gives you, like, a false sense of reality. Like, I told Brandon my brother that that came, like, I told him I was, like, it’s too much me to go places. It’s too much my walk away from which is, like, digital workers, like, seven pounds, yeah. Like, I’m not worried about the walker.
Bill Gasiamis 1:17:57
Like, it just goes to show the difference in people’s behaviour.
Wesley Ray 1:18:03
My walk aways a lot. This is hard, this too much.
Bill Gasiamis 1:18:07
People cope differently. They manage difficult situations differently, and they have different levels of resilience. And, yeah, and it’s probably traumatic and emotional and all sorts of things. Well, you gotta see.
Wesley Ray 1:18:23
For me, it was like, Okay, I moved to here, and everything is close by. I can walk to target, I can walk to home goods. I can walk to Chick fil A, like I said, there’s a I signed up with the gym. That’s like a half half mile walk, yeah, and that’s what I did every day. I work out, sleep in because I have nothing to do, and it goes the day. So I sleep in and then be like, okay, the kids get on my 230 Okay, let me go to the gym. Get busy, even if I take my time and I play on my phone. Have to tell me the gym, at least I’m there doing something.
Bill Gasiamis 1:19:01
Yep. So joining me on the podcast, what was the point of that? What was the purpose to help other people, get the message out there, encourage people.
Wesley Ray 1:19:11
I know there’s a lot of curiosity. Like when I started watching a podcast, I just wanted to hear people like the recovery process. Like, wanted to hear people what happened when they started it, and where’s that now, I really wanted to hear people’s experience with a tenor set curiosity, best stem cells, but I don’t think I ever heard that on your podcast, but so I was like, Okay, I get both. I got attorney said and stem cells, yeah, and doctors told me what, I will never recover. And I have I’m not perfect, yep, not, I’m not. Stopping either.
Bill Gasiamis 1:20:02
Yep, the recovery keeps going. Everything continues.
Wesley Ray 1:20:07
And you hear that a lot like, Oh, you have six months, you have one year, you have to get better. After that it stops. Yeah, no. I just went to a one year for me was in March. I just went to, I just upgraded to the game a month ago. I’m trying to do puss up, not the gym. At the gym, I can almost do everything I can. I did the wrong machine. I get on the treadmill like, Yeah, I’m trying.
Bill Gasiamis 1:20:42
Yeah, you’re doing a great job, man, if you could share one lesson from your stroke journey with somebody who’s been newly diagnosed, what would it be?
Wesley Ray 1:20:54
Just don’t give up. Make short, obtainable goals so you keep, keep going forward, forward. Don’t like, I know you have this drug in there, but it’s like, I want to walk. I want to walk. Want to do this that’s too far away. There’s so many short things you can focus on to help you get there. Like, so for me, it was, I want to be able to feed myself. That’s That’s simple. I can do that. I want to be able to go upstairs with a hand rub, like nasty. I want to be able to do push ups, like short, obtainable goals.
Bill Gasiamis 1:21:41
And then they stack up, they become big wins over a long period of time, yeah.
Wesley Ray 1:21:47
Then you look back and you’re like, Okay, I got it. It’s intercept, okay, I got this stem cells, okay, I got this Tesla, okay, I need something now to work for it. Okay? Now what to do? To push ups like, it never stops, yeah, it’s always something obtainable that I know I can get to. Versus like, hey, I want to get better. It’s too broad. You can’t, you can’t measure that.
Bill Gasiamis 1:22:19
Yeah, it’s too broad? Yeah, you have to focus on something small, measurable, attainable, and then stack that up many, many small, measurable and attainable things make a big improvement.
Wesley Ray 1:22:32
And see when they get to the hospital, they said that a lot though, like, like, the therapist and the doctors that came in, they’re like, because there’s a bunch of us there and they’re, like, if you go and ask people their goals or what they want to achieve and accomplish with you, like, the aiming for the moon, it’s all like, a big part spectrum. So like, but you have short things that you can measure and get there fast. And then you you have steps like, yeah, you’re not trying to get to the top of the mountain. You’re trying to get to the next step.
One Step, No RegretsBill Gasiamis 1:23:11
The next step, yeah, you rack up the winds, and then you look back to see how far you’ve come. You reflect, and then you focus on the next step. And it’s always it’s like the what’s the first next step, rather than Yeah, how do I get to the top of the mountain? It’s overcome the challenges as they appear. Don’t try and work out what all the challenges are, because there’s too many of them.
Bill Gasiamis 1:23:34
Just the ones that you need to work on are the ones that appear in front of you, and for you, you work on those you got results. You proved people wrong. You were encouraged along the way. Some people didn’t turn up, some people left, others stepped up. And here we are. We’re talking on the podcast. You’ve had a tenner set. You had a good result. You had stem cells. Yeah, not so bad. Maybe something’s going to happen later.
Wesley Ray 1:24:00
These stem cells. I’ve had friends. I’ve had multiple friends get them for, like, some injuries and like joints to make them feel better and stuff like that. And they, they loved it and sore very obviously, I can, I can’t really feel the left side, so I can only feel half anyway. So it might be working on this, I don’t know, yeah, but one of the, one of the main things that they told me about this stem cells, is it takes a while. It’s not like the antenna said, where they give you the shirt, and it works. It works or doesn’t.
Wesley Ray 1:24:37
Yep, the stem cells there’s like, they were like, they were, like, it could take five or six months, like, everything is slow, and so I’m at the one month mark. Yeah, I’m glad I tried. I don’t feel it. Feel it right now, but I’m glad I tried it, because if I didn’t out in my head, I would be like, what happened if. I didn’t try it, or what happened if I would have tried it? The same thing with the thinner set, when they got the second shot, I was like, a big part of me was like, I shouldn’t get the second shot. It sounds like waste of money. And I was like, okay, but if I don’t get it, I’ll always think, what if?
Wesley Ray 1:25:21
So again, but I did because I think it, it did a lot more than the first shot for what I wanted. The the first shot helped, but the second shot did a lot more noticeable things that I could notice. Yeah, if I could do it all again instead of right now, instead of the stem cells, I would have got a third shot of between etanercept, okay, cuz they’re about the same price, so I’d rather gotten the third shot of 10 or six, and that might now okay.
Bill Gasiamis 1:26:05
I really appreciate you a reaching out. I’m so glad my podcast has helped, and that you found some things to go after when you listened. Thanks for joining me and sharing your story. I really appreciate it. I love your attitude. Thank you. I wish you all the best in your recovery.
Wesley Ray 1:26:21
Hope is a powerful thing.
Bill Gasiamis 1:26:23
Yeah, man.
Wesley Ray 1:26:24
Just keep hope.
Bill Gasiamis 1:26:28
Thank you, man, thank you for joining me. I really appreciate it. Thank you. Thank you. Well, thanks again for tuning in. That’s another episode done. Remember you are the hero of your recovery. My job is to simply guide you with stories, strategies that prove recovery doesn’t stop, unless you stop. If today’s conversation with Wesley Ray inspired you, here’s how you can take the next step. Grab a copy of my book The UnexpectedWay That A Stroke Became The Best Thing That Happened. Just visit recoveryafterstroke.com/book.
Bill Gasiamis 1:26:59
You can join my patreon community and help me get to 1000 interviews with stroke survivors. You can subscribe on YouTube Spotify or Apple podcasts so you don’t miss future episodes. And before we wrap up, let me remind you, if you’re struggling with hand function after stroke, the Hanson rehab glove by so Rebo, distributed by Banksia tech, could be a game changer.
Bill Gasiamis 1:27:22
It’s designed to help improve movement at home, you can keep making progress between therapy sessions, and if you want to check it out, you’ll find the link in the description. I’m Bill Gasiamis. Recovery is about showing up, doing the work, and refusing to quit. That’s how you win the day. I’ll catch you in the next episode.
Intro 1:27:42
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed all content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only, and is largely based on the personal experience of Bill Gasiamis.
Intro 1:28:12
The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice, and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.
Intro 1:28:37
Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content, if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be call triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department medical information changes constantly.
Intro 1:29:04
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The post Etanercept Stroke Recovery: Wesley Ray’s Relentless Comeback appeared first on Recovery After Stroke.
Dr. Tobinick Stroke Treatment: Karen’s Recovery Story of Hope and HealingLife Before the StrokeKaren Quigenden lived an active and full life on Queensland’s Sunshine Coast. At 47, she was working in community care during the week and spending weekends at rodeos with her youngest daughter. Horses, long days, and caring for others defined her lifestyle. She considered herself healthy, fit, and unstoppable.
But everything changed one ordinary day while driving home from work.
The Day Everything ShiftedKaren began to feel strange behind the wheel. Her right hand stopped working, her mind clouded, and her car drifted across the road. Police noticed her erratic driving and tried to intervene. In a moment she’ll never forget, she crashed into their vehicle before collapsing.
Ambulance crews, firefighters, and eventually a helicopter rushed her to Brisbane’s Princess Alexandra Hospital. What followed was the shocking diagnosis: a hemorrhagic stroke.
In disbelief, Karen thought, “I’m only 47. I’m too young for this.” Doctors explained recovery wouldn’t be six or eight weeks like a broken bone — it would be measured in months and years.
The Rehab BattleKaren spent weeks in the hospital, adjusting to life with her right side weakened and her speech impaired. Nights were sleepless, surrounded by the noise of other patients. When she was finally moved into her own room, it was the first chance to think clearly.
Rehab at Sunshine Coast University Hospital became her full-time job. Hours in the gym each day tested her body and her patience. She often described hitting a “brick wall” of fatigue — no matter how strong her will, her body forced her to stop.
Through it all, she missed her youngest daughter deeply. “The hardest part wasn’t the physio,” Karen recalled. “It was being away from her.”
Discovering Dr Tobinick’s Stroke TreatmentYears later, Karen heard about Dr Edward Tobinick in Florida and his off-label use of etanercept stroke treatment. The idea sparked hope but came with a heavy price tag — around $30,000 AUD. Determined, Karen sold her farm, booked the trip, and flew halfway across the world with her daughter.
In Dr Tobinick’s clinic, she was tested with tasks like drawing a clock, then received her first injection. At first, she noticed nothing until a mirror revealed the return of her dimple, a facial feature lost since her stroke.
Other changes soon followed:
- Normal sensation inside her mouth
- Relief from constant neck pain
- Clearer thinking and reduced brain fog
- A lighter feeling in her leg and improved mobility
By her third injection, improvements were undeniable. Karen described the difference as “going from kindergarten to grade two” in her ability to perform tasks.
Tools That Help Along the WayWhile Dr Tobinick’s stroke treatment gave her a breakthrough, Karen also credits ongoing rehab tools. She regularly uses the Syrebo Hanson rehab glove, distributed by Banksia Tech, to improve hand function.
“It opens and closes my hand, stretches it out, and makes a real difference,” she explained. “I use it every week.”
A New NormalKaren has reclaimed independence — even regaining her driver’s license. Now she can support her daughter at rodeos again, this time from the passenger seat or the sidelines.
Her biggest lesson? Recovery takes time, but progress never stops.
“Just keep going. There’s no date where you’ll suddenly be ‘back to normal.’ Recovery keeps unfolding in its own time.”
TakeawayKaren’s story shows how stroke recovery is rarely a straight line. For her, exploring new treatments like Dr Tobinick’s stroke treatment provided hope and tangible improvements. Combined with consistent therapy and the right rehab tools, she continues to move forward.
If you’re on this journey, remember: you’re not alone, and your story is still unfolding.
Get my book The Unexpected Way That a Stroke Became the Best Thing That HappenedSupport The Recovery After Stroke Podcast on Patreon
“Recovery has no deadline — but you’ll get there. Just keep going.” — Karen
DisclaimerThis blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
Karen’s Recovery Story of Hope and HealingAfter a dramatic stroke at 47, Karen found hope in Dr Tobinick’s treatment — and discovered recovery can keep moving forward.
Highlights:
00:00 Karen Quickenden’s Background and Lifestyle Before Stroke
07:18 The Day of the Stroke
13:56 Hospital Stay and Initial Rehabilitation
26:33 Discovery and Decision to Seek Treatment in Florida
35:32 Experience at Dr. Tobinick’s Clinic
43:23 Post-Treatment and Ongoing Recovery
55:01 Impact on Family and Daily Life
Transcript:
Karen Quickenden’s Background and Lifestyle Before Stroke
Bill Gasiamis 0:00
Hello and welcome to another episode of the recovery after stroke podcast. Before we dive in, I want to thank all the patreon supporters who make this possible. Your support helps cover the costs of hosting and producing this show, and after 10 years of doing it on my own, I can now keep creating content for stroke survivors who need hope.
Bill Gasiamis 0:20
Thank you also to those who buy my book, leave reviews on Apple podcasts and Spotify, and everyone on YouTube who comments and doesn’t skip the ads. You all make a massive difference. Today’s guest is Karen Quicken. Then she was just 47 when a hemorrhagic stroke struck while she was driving, leading to one of the most dramatic rescues I’ve ever heard.
Bill Gasiamis 0:44
Police, fire and an ambulance all working together. Her journey didn’t stop there, from months of rehab to selling her farm and traveling across the world to Dr. Tobinick’s clinic for three shots of etanercept. Karen’s story is one of courage, risk and surprising breakthroughs. And before we begin, a quick thank you to Banksiatech, distributors of the Hanson rehab glove by Syrebo.
Bill Gasiamis 1:11
The glove is designed to help stroke survivors improve hand function at home, whether you’re early in recovery or years into it, you’ll hear more about how Karen uses this exact glove later in the episode. Now sit back and relax and enjoy our conversation. Karen quickendon, welcome to the podcast. Thank you. Thanks for being here. What was life like for you before stroke? What did you do? How did you get it by your day? What you got all your hobbies.
Karen Quickenden 1:44
What did I do? I went to work Monday to Friday, and I spent the weekends at rodeos and barrel races and all that type of stuff. I did some split shifts, which allowed me to be home in the middle of the day. So there’d be a lot of dealing with horses then. And my daughter, at the time, is still at school, and she’d get home from school from for the day and have some to eat and then start working on horses.
Bill Gasiamis 2:22
Rodeos that’s a massive Northern Australian thing. We don’t have rodeos in Melbourne. I’ve never heard of a rodeo, I’ve never seen a rodeo, I never knew they existed in Australia. Where do they do rodeos, and how often do they do them? If you were there all the time.
Karen Quickenden 2:38
Probably about every second weekend, or every weekend they’re all over. They’re from Rourke right through to the top end.
Bill Gasiamis 2:52
Uh huh, and how did you participate? Did you just turn up and spectate? Or were you guys participating them?
Karen Quickenden 2:58
My daughter rides yeah. She rides in it. She does the barrel race, which is the three tins. And you go around the three of them in a.
Bill Gasiamis 3:11
Figure eight?
Karen Quickenden 3:11
Yeah, type of thing, yeah.
Bill Gasiamis 3:14
Okay. And then they’ve gotta do it the quickest, so it’s up, yeah, yeah.
Karen Quickenden 3:19
So she she does that, and she does steer and decorating, yep, and she does a broken tie.
Bill Gasiamis 3:29
So, you know, you know, when a horse doesn’t do well, or when the team doesn’t do well, do you sometimes get the riders going? Oh, the horse is terrible. This horse doesn’t know what to do. And then vice versa. Does the horse ever complain about the rider?
Karen Quickenden 3:43
No, the horse doesn’t complain. She’s really lucky. She’s got some really amazing horses, so she doesn’t really complain that much. She blames herself. So that’s good.
Bill Gasiamis 3:57
It’ll wait. She’s learning how to take responsibility.
Karen Quickenden 4:00
Yeah, yeah. She’s turning 19 on Sunday, so it’s been three, three and a half years of going out there and getting things for herself. Why I do rehab.
Bill Gasiamis 4:19
All kinds of rehab. So what was your kind of work? What work did you do through the week before the stroke?
Karen Quickenden 4:26
SB Care, which was South Burnett Care, so I’d care for all sorts of people.
Bill Gasiamis 4:35
like Disability Assistance, that type. And that meant that you spend time in people’s homes, go in check, in on them, etc. Yep, that’d be me, yeah. Fair enough. Your family. What’s that like? Is just you and your daughter, or is there others?
Karen Quickenden 4:52
No I’ve got two older daughters, Tamasha is 30. She. Runs vet clinics in Brisbane, and she’s doing her own thing. She’s a lovely girl, lovely. And Danica is 29 on the first of August, and she’s happily married, and three little girls.
Bill Gasiamis 5:19
So it’s lovely. So you got two that are totally independent out of the house, even become moms, and there’s grandkids running around and everything, and then you’re still caring for your daughter, you know, in her last sort of few teenage years, or she’s about to fly the coop.
Bill Gasiamis 5:41
Life’s pretty full on. It’s exciting, and it’s amazing, and you’re doing things that you love, and it’s a really active lifestyle, yes, yeah. And up in the Sunshine Coast, in the northern part of Australia, you know, there’s more sun, there’s more warmth, there’s a lot of outdoor stuff that’s happening.
Karen Quickenden 6:00
Yeah, there is.
Bill Gasiamis 6:03
Rodeo every second week.
Karen Quickenden 6:05
About every second week, yeah, yeah. Very cool. We go to barrel races midweek and, do all sorts.
Bill Gasiamis 6:16
Did you have a sense of the condition that your body was in? It with regards to your health. Did you? Would you have described yourself as somebody that was healthy, fit, and all that kind of stuff?
Karen Quickenden 6:26
Oh, yeah, healthy fit. I just did what I had to do.
Bill Gasiamis 6:30
Yeah. How old were you at the time?
Karen Quickenden 6:37
I was 47.
Bill Gasiamis 6:42
So you were a young mum, if you’re 47 at the time, and you’ve got kids that are near their 30s, you were a young mum.
Karen Quickenden 6:50
Yeah, yeah.
Bill Gasiamis 6:54
Wow, that’s so cool. So then I can imagine, at 40 ish, you’re still full of energy, real fit all over, running around, doing all sorts of things.
The Day of the StrokeKaren Quickenden 7:04
Yeah, yep, I get up from about six in the morning. And you know, there’ll be some days where I’ve finished work at seven o’clock and, you know, get home, find out which horse has done what. Yeah, it was good. It’s real good.
Bill Gasiamis 7:24
So what happened on the day of the stroke? Do you have any recollections of what that day was like?
Karen Quickenden 7:29
Yeah, it was like a normal day. And I’d been to two clients that morning and and I was driving back into town, and I thought, Oh, my stop. It will worse. And then I started feeling really funny, and I thought, no, blow it. I’ll just go home. And I started going home, and I pulled up that these set of lights, and I was looking around, trying to work out what, what was wrong, and I still didn’t get it.
Karen Quickenden 8:03
I drove forward and kept going, and then I went, something submits, something’s gone really funny. And I pulled over, and then I realized that my right hand wasn’t working. And I thought, what, what’s wrong? And then I thought, oh, righty, oh, keep going. I’ll, I’ll get home. Dad will know what’s wrong. And and I went down and went around a big roundabout, and I started heading out at an old Creek Road.
Karen Quickenden 8:40
And yeah, apparently the police had spotted me. It really like it’s funny for police to see me, and I was all over the road and and the police were behind me, and they come up beside me. And they thought, this girl, there’s something wrong, like she’s not just drink driving or anything like that. There’s something really wrong. She’s not seeing us.
Karen Quickenden 9:14
They got in front, and I sent him again, and I thought, Oh my God, what’s what’s wrong with me? I can’t stop the car and and then they stopped in front of me, and I went, boom, straight up the bathroom. And I thought, Oh my God, and he couldn’t get in the front of my car. And I thought, what’s going on? And then he got into the back of the car, and I just thought, oh, okay, well, I’m going to sleep.
Karen Quickenden 9:50
And then I don’t remember anything from then, apparently, the far. A was there, the ambulance, and everything was there. And I woke up in Kingaroy hospital, and I was just laying in the hospital, couldn’t speak, and I was laying there, and I looked around at everything, and I thought, What are they doing to me? Like and I looked over to the right, left hand side, and my daughter was standing there, and she was crying and crying, crying, and I couldn’t even ask, what’s wrong with me? What just happened? And yeah, it was, oh, big things from then on.
Bill Gasiamis 10:47
We’ll be back with more of Karen’s remarkable story in just a moment. But first, the sponsor of today’s show is Banksiatech.com.au, proudly distributing the Syrebo Hanson Rehab Glove, a soft, robotic love that helps stroke survivors exercise and improve hand mobility at home, whether you’re regaining function or preventing stiffness, it’s a practical tool that makes rehab accessible.
Bill Gasiamis 11:13
You can learn more and order even internationally. At Banksiatech.com.au, I love being able to share these kinds of solutions with my listeners. They are the perfect sponsor, because they’re real products. They can help stroke survivors keep moving forward.
Bill Gasiamis 11:31
Now, back to Karen’s story and her decision to travel overseas for Edward Tobinick’s etanercept stroke Treatment. My God, the cops are involved. The fire is involved, yeah, and bows are involved, yeah, that’s the most dramatic stroke experience that I’ve ever heard. I mean, yeah, all of them are ridiculous and shocking, but even that one, when you’re driving and people are trying to help you while you’re in a car, yeah, they’re trying to stop the car, and you run into the police car.
Bill Gasiamis 12:05
Oh, man, that is so dramatic. And I can’t believe like that would have been almost like one of those slow motion, hot pursuits, you know, where they’re chasing after a car, but, yeah, where they’re chasing after a car, and the person’s going really slow, but it’s like the most cute, high speed chase ever. Yeah, you’ve woken up in hospital. Paper are around you. You’re they’re everyone’s trying to work out what’s wrong. When’s the first time you’re noticing or you become aware that you’re unwell, it’s you that the problem is and you’ve had a stroke.
Karen Quickenden 12:41
Yeah, well, I still didn’t know what it was at Kingaroy. I knew that there was, it was me, and like, I went back out to her then, and then I woke up, and they were putting me in a helicopter, and I remember looking at the faces of the guys, and I’m thinking, Where am I going? But I couldn’t ask, so I couldn’t say anything. And I thought, alright, okay.
Karen Quickenden 13:11
So got in the helicopter and went back to sleep, and I woke up as well coming down in Brisbane, and I just remember going like this, and the guy grabbed me a vomit bag and everything, and because I hadn’t eaten all day, like, like, where’s the food? I’m hungry. And, but I couldn’t ask, and and I vomited, and had a look around, and I thought, oh God. And I went back to sleep, and I landed in the PA.
Hospital Stay and Initial Rehabilitation Before Dr. Tobinick stroke treatmentBill Gasiamis 13:57
Prince A. PA which hospital is that?
Karen Quickenden 14:00
Princess Alexandra? I think it is. And, yeah, they took me in there, and they opened my eyes, and I saw everyone around the room all in their whites, and I thought, Holy hell, this is real. What’s going on? And they gave me needles and all sorts. They took me into theater. They did what they had to do.
Karen Quickenden 14:28
And then I woke up in the room at midnight, and I looked and tamisha and Danica and Mitch with were there, and I looked at him, and I went. And they went, oh my god, Mom, you’re awake. You’re okay. And I said, like, but my voice wouldn’t let me talk. And and a nurse come in and said, Alright guys, it’s, it’s midnight, you know, let your mother sleep now.
Karen Quickenden 14:58
She’s awake, you know. She. Is okay, and I went back to sleep, and I woke up the next morning and my right arm and leg were just, just there, and I’m like, what has gone on? Oh, really. Like, this is not funny, and the doctors and that come around. And they started talking to me, and I said, book. And they said, Oh, that’s alright.
Karen Quickenden 15:30
And they went through and you, they’ve gone, Karen, you’ve had a stroke. And I went, me, and they’re going, Yes, you have and I said, No, I’m not like I think I got out old enough. And they said, Yes, you are. Everyone can have a stroke. It happens to everyone any age. And I’ve gone, whoa. And I asked six weeks, eight weeks, how they they said, Oh, you want to know how long it takes us. And they said, How long is the piece of string? And, oh, my God, I cried.
Bill Gasiamis 16:18
You’re hilarious. Oh, so even in that moment, you’re in denial. Firstly, day two, right? They tell you, you have a strike, fair enough. That’s, you know, I’m 47 I’m not old enough to have a stroke. That’s cool, denial. And then immediately, like, six weeks, eight weeks, 10 weeks, like it’s a broken bone, you they’ll give you a timeline you’ll work towards that you’ll be back on on board and, yep, back to normal, quote, unquote, normal life.
Bill Gasiamis 16:48
Yeah, yeah. That would have been hard to handle so that that’s day two. You’re already thinking about your recovery and how quickly you can go back to your yes, what? Yeah, it’s like already there. These guys are breaking your heart. Yeah, yep, spend in hospital.
Karen Quickenden 17:09
I spent three weeks in Brisbane, and I was getting cranky because you’re in a room, and there’s four beds, and, you know, it’s pretty disturbing. It’s, you know, like people in there for different things, stroke different, it’s all different. And everyone’s trying to, number one, realize what’s going on with them. And then you got the person in the next bed who’s tied down to the bed and trying to, like they’re filling him up with all sorts of medication and and then you got the guy across from me.
Karen Quickenden 18:08
And you know that there’s people, everyone’s got their own thing. And you know, you get woken up about three times a night because the guy crosses, having a medical episode, and, and you’re like, you just laying there, and you’re just thinking, oh my god, please do something, you Know, Like, so they, they organized my own room and, and that was heaven.
Karen Quickenden 18:44
That was the first night of sleep. And like it was just me. I could think. I could, you know, think about everything and, and it was just me in that little room. Didn’t have to worry about anyone else. And then they came in and said that the kiwana Hospital, which is University Hospital on the Sunshine Coast, is ready to have me. And I said, yeeha, so rehab hospital, yeah, it was the best.
Bill Gasiamis 19:27
So, you know, when originally you went to King ARoy, how close is that to your home?
Karen Quickenden 19:34
At the time I was living out there, it was about 15 minutes?
Bill Gasiamis 19:40
Okay, so king of Roy was the sort of small hospital out of in the middle of nowhere. You guys all lived on your farm and played on your horses. It wasn’t equipped to handle a stroke patient, so they flew you almost what, two hours away by car. You. About three hours to Brisbane, yeah, yeah. So they flew you to the nearest hospital that could handle your stroke, the situation that you were in, and then also, then you went to rehabilitation. Yeah, was that somewhere near Brisbane?
Karen Quickenden 20:18
It was, it’s about two hours, oh, about an hour and a half away from it. Yeah, closer to home. Yeah, well, it’s probably about the same distance. And, I mean, it was home for, what, three months, four months.
Bill Gasiamis 20:40
So you spent time there, and that’s what I’m trying to get my head around. Now you’re away from home, yep, family, yep. It’s really inconvenient, technically, to be where you are. Were they around? Were they able to be there for you?
Karen Quickenden 20:54
Well, Tamasha lived in Brisbane, so when I was in hospital in Brisbane, she was there every day. She’d bring a work with her, and I’d wake up and she’d be there and and we would start talking on a a blackboard. And I remember one day I was trying to say something, and and I and she said, What? And I said, No. And we started laughing.
Karen Quickenden 21:28
And we just like, come on, fix it. Like, start working. It’s only your voice. And then the day that I came back to Sunshine Coast was a Thursday night, and she was in there and got me organized, and the ambulance come and and brought me up to hospital. And then it was danica’s turn. She had two kids then, and they were wonderful.
Karen Quickenden 22:04
They would like, I’d have a a daily routine of what I had to do, and I was awake at eight o’clock ready to go down to the gym room, and I’d go all day. I’d get time off for lunch, and then they take me back down, and I’ll do something else, and like I will work in the gym from eight to 12 and then from one to three in a day. And I was had it. I couldn’t understand the the mental side of it, like it was like, I wanted to keep going, but the body was saying, I gotta stop, yeah. And I wasn’t used to that.
Bill Gasiamis 22:57
Fatigue and exhaustion right? Just gone, and no matter what you wanted to do, it was no doing it. That was it. It was just done. Yep, I know that feeling. It’s like you hit a brick wall. And lots of people have said that to me, I hit a brick wall today, but I’m like, feeling like I actually smacked into that thing at an hour, and it was solid, and it didn’t move an inch, and it just it put me on my and that was it.
Bill Gasiamis 23:24
And until I sit down and rest and recover, there is no getting back up and doing anything. Yep, yep. I know that. So in this three month like you seem very happy, go lucky, quite chirpy and cheerful. Did you have your downs as well?
Karen Quickenden 23:42
Yeah, I did.
Bill Gasiamis 23:43
What was that like? What were the parts that kind of upset you?
Karen Quickenden 23:48
Um, oh, God.
Bill Gasiamis 23:55
Like they still do, right? I understand.
Karen Quickenden 23:57
I think the biggest thing was my daughter being in home. And I couldn’t be there for her.
Bill Gasiamis 24:23
Yeah, the youngest, You’re home alone.
Karen Quickenden 24:29
She was at home with my dad. Yeah, she was.
Bill Gasiamis 24:40
She seems like, though, if she grew up around you and her sisters, that she would have been quite the independent kid, and nonetheless, you’re thinking about her going through it on her own, kind of without you and without anyone attending to her.
Karen Quickenden 25:02
Yeah, yeah. I mean, you know, my dad was always there, but you know what? That’s like? Dad’s a very, um, very different to mum,
Bill Gasiamis 25:24
supportive in a different way. Yes, yeah, they are not mum. And definitely she’s thinking about mum actually being unwell away, and you wanted to kind of prove to her that you’ll be right, that everything will get better, but you couldn’t do that because you were in a hospital elsewhere,
Karen Quickenden 25:45
fighting the battle.
Bill Gasiamis 25:47
So your rehab and your recovery, what were you trying to get back? Obviously, your voice and then, yeah, your right side of your body. What parts of the right side of your body were offline
Karen Quickenden 25:59
the lake and right up the, you know, my chest and right up to the shoulder, the neck, the arm, everything. Everything was down.
Bill Gasiamis 26:16
Where are they now, after nearly, what, three years,
Discovery and Decision to Seek Dr. Tobinick Stroke TreatmentKaren Quickenden 26:20
um, in three years. It’s come a long way, but it’s like anything, um, it would take time. Yeah, time I don’t have. Well, I do. I’ve lost the time. Um, I went over to Florida in
Bill Gasiamis 26:43
February. Yeah, tell me about that. Oh, what a
Karen Quickenden 26:48
magnificent if you look at my face, I have a dimple back.
Bill Gasiamis 26:54
Oh, my God, you went to Florida and you got a dimple.
Karen Quickenden 26:59
I couldn’t care about anything else, but he showed me a mirror, and I looked and I went, my God, I got a dimple.
Bill Gasiamis 27:10
So you’re talking about Doctor, tobernik, right? Yes, that’s him, okay, so this is interesting, right? We have mixed responses. People go to tobinick and they get no result because of the condition doesn’t support the medication, etanercept doesn’t help a particular person, and yeah, or that person ends up being disappointed and dealing with all sorts of things, right?
Bill Gasiamis 27:36
We totally get it, and then we get other people who just rave about it and think it’s amazing. And everyone hears those stories, and then goes there with hope that they will be one of the lucky ones, right? We’ll call it. So you went there, but it didn’t miraculously fix everything.
Bill Gasiamis 27:53
You’ve got your dimple back. I understand that that is really important. My wife has got one dimple. She’s always had one dimple, yeah. And I kind of always ask her, where did the other one go? Has it been relocated? Where is it? Anyhow? You obviously are attached to your dimples. You very fond of them, right? So when one disappears, you notice.
Karen Quickenden 28:16
I notice the dimple the inside of my mouth, which I didn’t think anything was wrong. There was cos I said to him, it’s gone. And he goes, what I said, thing in my mouth. And he said, What’s it feel like now? I said, normal. It feels normal. And he goes okay.
Bill Gasiamis 28:46
Inside your mouth as a as a result of the stroke, you had an strange feeling, yes, on the inside of your mouth, on the right side as well.
Karen Quickenden 28:54
And it was gone. I was like, Oh, thank God. I didn’t even know it was there. But after having the injection, I was like, wow, that’s that’s great, and I got no pain in my neck that’s all gone. I can lift my arm up. I’ve got no pain on my left side, in my ribs or anything like that. Down to my hip, my leg is getting stronger and stronger up the top, top of the leg, and yeah, it’s, it’s moving around. It’s still, to this day, I’m finding things are always getting better.
Bill Gasiamis 29:54
Alright, how long ago was this trip to in this February? Okay, yeah, so February. 2025 it’s been now, and now we’re recording in July, 2025 so it’s been about six months. Yeah, okay, and can you tell me a little bit about how you found out about it and what made you go? Let’s talk about the discovery of the etanercept treatment. For stroke survivors. How did you discover it?
Karen Quickenden 30:27
I had a worker out at Kingaroy, and she rang me and she said, I’ve got a stroke client. And I said, Oh, yeah. And she said, she only had her stroke six months ago or something, at the time of the phone call. And I said, Yeah, how’s she going? She goes, no good. She’s like a husband saying She must not get out of the chair. She must not do this, do that, so she doesn’t do anything.
Karen Quickenden 31:07
I said, Oh, that’s not good. And she said, yeah, she’s not you. And I said, Oh, okay. And she said, I want you to look this up for me and see what you think, because this lady is going for it, and I think you benefit from it. I said, okay, and she gave me his name and everything, and I had a look and recessed as much as I could. I went to my parents and told them about it, and and, of course, when it come down to the money side, they were just like, really? They didn’t know what to say.
Bill Gasiamis 31:48
Because it’s a lot of money, right? They’re thinking, yep, heaps of money. What are you going to do? You’re going to go over there, blah, blah, blah, the usual thing that people think of, right? What? What’s the money amount in Aussie dollars. What would it cost?
Karen Quickenden 32:01
I think it’s about 30,000 it’s a lot of money, yeah. And so I had to go through, selling the farm, selling everything, getting the money for it. And, you know, I I did all that, and we went around my oldest daughter, and I told her about it, and she goes, yep, so when are we going? I said, right, I’m going. You said you’re going, I’m gone.
Karen Quickenden 32:38
And I booked and we are up at three o’clock one one night, and had a phone call with him, and it was like, this isn’t happening. And I said, I can’t believe that I’m going like, I’ve got an opportunity here. It better work. So we booked a holiday as well. We booked we saw the Bahamas, all sorts. Okay, we did all sorts. While we were there, I tried to do everything or possibly could.
Bill Gasiamis 33:23
Why not? You may as well. You’ve gone so far. Yep, traveled halfway around the planet. You may as well. Now, in those initial conversations with Doctor Toby Nick, do you get a sense of you also might not get a result? Does he let you know that there is a possibility that it might not work? Yep, but he take that news like, if he’s upfront and says that, how do you take that news, knowing I’m going to go there, I’m going to drop 30 grand, and then it might not work. How do you deal with that?
Karen Quickenden 33:53
I don’t know. I didn’t think about it. I was on a high, I suppose. But I think planning as if we were going on holidays was probably a good thing because we were, you know, Tamesha has everything down to the tea. And I thought I don’t know if I’m going to follow your routine, but I’ll try.
Bill Gasiamis 34:38
Yeah, because you’re probably also thinking about being exhausted and all the stuff that you have to deal with. But you and her, I mean, at her, her age, like, you know, just before 30 and you at 47 you guys are like sisters more than anything. Yeah, all the time. So it’s very high energy, very full on.
Bill Gasiamis 34:58
And then you guys do the deal, so to speak. You know, you have your chat with Toby, Nick. Toby, Nick tells you all the pros and cons. You make an informed decision, and then you go, I’m off. You also book a holiday so you can make the most of it. But you get to Florida, and then you go to the clinic, yep. Tell me about how that goes for you. What is that like?
Experience at Dr. Tobinick Stroke Treatment And ClinicKaren Quickenden 35:20
It’s it was like, Well, this is my turn. And, you know, you, you go in there, and the staff are amazing. They’re really positive, nice, general people, you know, like, yeah, they were, they were great. And they took us into a room and did little tests on me. Like, the one that sticks to me is, can you draw a clock?
Karen Quickenden 35:56
Yeah, so do the outside you’re doing the numbers and and, can you place the hands at 10 to 11? I said, yep. And I did all that and everything else that they asked me, and I gave it to them, and they took me in, gave me the first needle, which you put your head down, puts the needle in, then swings the chair up, and you’re laying back for 10 minutes, I suppose, and they’re talking away, having their own conversation.
Karen Quickenden 36:32
And I’m laying there and I’m thinking, huh, what’s happening? Like, yeah, and if it’s flips me back up and says, Can you feel anything? And I said, No, it wasn’t until he put the mirror in front of me that I could see it all happening. And I went back for the second needle at a week’s time. They didn’t do much of investigation. Against me.
Karen Quickenden 37:03
Then it was sort of like, just let it do its thing and see in a week. I said, okay, and I go back for my last one. And they said, we’ll get you to do a a clock again. And I said, Yeah, no worries. And I did it. And I did it perfectly. And they showed me the one that they first got me to do. I went, Oh my God. I said, I didn’t do that, did I? And they said, Yes, you did. I went, Oh my god. It was like looking at a child in kindergarten doing a clock, and then looking at a now, she’s in gray too, looking at her clock. It’s so different.
Bill Gasiamis 38:00
You didn’t happen to take a photo of it. Did you?
Karen Quickenden 38:06
No, I didn’t
Bill Gasiamis 38:09
You know that first week, were you noticing things improving? Did the pain in your neck go and so you noticed the first lot of difference happened quickly, as well as the dimple?
Karen Quickenden 38:21
Yep. And even my leg felt lighter, because it feels quite heavy, yeah, it felt lighter. By the time I had the third needle, I noticed that my hands, I couldn’t touch it. I couldn’t do that. Everything is just improving all the time.
Bill Gasiamis 38:46
Yeah, that’s so good after the second needle. Was it more subtle the changes? Or did you have, like, big changes, big notice?
Karen Quickenden 38:58
Probably not. I don’t think. But there was nothing to really report, though, like it was just, I felt the same. Dimple was the same. It probably wasn’t till the third needle that I started to notice big changes, like, you know, the dimple was definitely there. It wasn’t going anywhere.
Bill Gasiamis 39:31
So the third needle happened a week after the second one?
Karen Quickenden 39:36
Yep, yep,
Bill Gasiamis 39:40
Wow. And then you started to feel even lighter. What happened?
Karen Quickenden 39:45
Yep, it was funny, because the hand, like the shoulder, everything feels really good, but I say, you know, why won’t it work? Okay, you know. And they’re like, well, it takes time, so keep working at it. And I said, Okay, I’ll keep going.
Bill Gasiamis 40:12
So you know, with with your stay, are you staying nearby, an accommodation near there the whole time,.
Karen Quickenden 40:22
Yeah, we stayed at.
Bill Gasiamis 40:27
And in that time, are you, do you have access to the to the clinic if you have any questions or any problems or challenges?
Karen Quickenden 40:34
Yeah, yeah, definitely.
Bill Gasiamis 40:35
And since then, has there been any follow up? Do you check in or touch base with anybody about anything
Karen Quickenden 40:43
They did. Four weeks after I got back, they sent me an email, and I sent back, and they said, well, good luck, and they’ll talk to me in February, see how I’m going.
Bill Gasiamis 40:58
So there’ll be a follow up at some point just to check in. Yeah. Do you think any of it has eased off? Any of the improvements have eased off, or they all still basically the way they were?
Karen Quickenden 41:12
No, like, even, like, my speech is a lot better. The brain fog is gone.
Bill Gasiamis 41:27
So sounds like looking back now, it sounds like your life has changed dramatically, physically, emotionally and mentally. It seems like there’s been a big shift.
Karen Quickenden 41:44
Yeah, a big shift.
Bill Gasiamis 41:46
Would you say is the biggest thing, the most important thing? I know there’s still things that need to come back, yeah, working on and that are not 100% where they you would might prefer. But what do you say is the biggest thing that is improved for you now.
Karen Quickenden 42:02
I think probably the brain and the the normality of the face And, you know, the leg and arm, whatever of I think to myself, well, it’ll get there one day, but at least, you know, to look at me, you you say, Yeah, I’ve had a stroke. Oh, have you Okay? Instead of, you know, them looking at me and going, Oh, she’s had a stroke. You know, blah, blah, blah.
Bill Gasiamis 42:44
So it’s obvious that you that you have had a stroke, if people just look at you and they’re not paying attention to you, yeah, yeah, fair enough, yeah. So what about you, though? Like, What have you discovered about yourself? Like, did you find new strength, or were you always kind of really able to get through difficult times and challenges, or what, how have you personally evolved and changed?
Post Dr. Tobinick Stroke Treatment and Ongoing RecoveryKaren Quickenden 43:14
Um, I suppose I haven’t changed that much. Probably, thinking more about me, and, you know, like, I’ve gotta go to the gym twice a week. I’ve gotta go, I’ve gotta go to this and that and whatever. And whereas before, that wouldn’t have been a choice to me, like going to work, getting home to my daughter, doing what has to be done is done. But nowadays it’s like go to the OT, go to this physio, go to that physio go to, you know, from Monday to Friday is everything about me, and that frees me up for the weekend.
Bill Gasiamis 44:10
But that seems to be a really important lesson that you learnt, that that time has come to make it about you. Yeah, everyone else can kind of fend for themselves, your older daughters, obviously, and your younger daughter’s old enough now she’s getting old enough where she’s becoming more independent. Yeah, yeah, you’ve laid the foundations for them already.
Bill Gasiamis 44:31
They know how to continue on with their life, what they’ve gotta get done. Yep, now you’ve got some space for you. Yeah, that’s right, that’s cool. And then, and then, what’s the idea behind coming on the podcast? What? What were your thoughts when you discovered there was a podcast in that you’d like to share your story? What was that for?
Karen Quickenden 44:59
My OT, Effie said to me, do you know Bill the podcaster? I said, Yeah, I’ve listened to him a few times. And she said, get him to contact you. I said, Oh, okay. That was it.
Bill Gasiamis 45:17
You seem really willing to share your story. Now, Effie is the sponsor of this episode, by the way, through one of their organizations that they do this glove. You might have seen this one. They supply the Syrebo hand glove to people. They use it every week. Okay, so this is not an ad for Effie and her organization, although they are the sponsor.
Bill Gasiamis 45:40
And whoever’s listening to this has already heard me mention them twice, yeah, in the intro and in the mid episode break. But that’s really cool that you use that glove that Effie suggested you should be on here. I really love that. I think it’s a really important part of the recovery is that sharing the story and getting off your chest and making it about somebody else.
Bill Gasiamis 46:05
Because people listening to you will get encouraged. They’ll relate to your story, perhaps, and they’ll relate to what you went through. They might even think about contacting Tobinick and all that kind of stuff. So that’s really cool, and I really appreciate you sharing your story in your own way. It is pretty dramatic. Your one I gotta say, ambos, helicopter, fire, cops. And you’re probably one of the few people who drove into the cop car and didn’t get arrested or didn’t end up in jail. That’s pretty cool. You can say you’ve done that.
Bill Gasiamis 46:45
It’s difficult, though I understand how difficult it can be, if you share one lesson from your experience with the people listening, or maybe people who are newly diagnosed, maybe even listening in hospital. Aanything you’d say?
Karen Quickenden 46:59
Just keep going. That’s all I can say, is keep going. One day we’ll all be back to, well, you could say normal. But what’s normal? Yeah, I think there’s never, like, there’s no date. You can’t put a date on it, like, by this date, it’ll be all over and you just get up and walk away. Well, hello, there’s no date.
Bill Gasiamis 46:59
Your six weeks has blown out a little.
Karen Quickenden 47:23
Yeah, way out. But you’ll get there. Everyone will get there. I know it’s horrible, and it’s, I tell you, the best thing I ever did was got my license. That was the first thing that I wanted to get, because my daughter got a learners, and I could sit next to her. I was allowed to do that. So we put the gooseneck on and and we go, and I say to her, I can’t wait to be driving this. She goes, just sit there, big Wyatt. And then I spoke to the girls from NDIS, and I said, right, how do I go about getting my license?
Bill Gasiamis 48:29
And they said, that’s a National Disability Insurance Scheme.
Karen Quickenden 48:44
Yes, I spoke with my ot at the time, who was out at King ARoy, and I said, I’m ready. I’ve gotta get my license. And yeah, so within a few months and some driving with a a guy in his car. And I was just like, Come on, give it to me. And then I got my license, and yeah, it was just.
Bill Gasiamis 49:17
So they initially took it off you after you became unwell. Yeah, license, yep, and then you had to resit the test and everything, right?
Karen Quickenden 49:26
No, I had to, had to drive. I had to go over to Toowoomba, and they had a lady over there. Had to sit with her one day and talk through it all. And I suppose she was checking that my mind was up to date with it all. And I remember saying to her, I might not sound as 100% but it’s all up here. And yeah. So went driving and NDIS pay for the the modifications, and went for a drive in it.
Karen Quickenden 50:14
And I was like, never, never again. Will you see me sitting still. I gotta be doing things. And even if I’m at home and I just go for a drive somewhere, look at the beaches. Drove out to Gatton, where Marley is living, and we’re going today, actually, um, today, she’s doing some roping training with a guy that does roping, and tomorrow she we go to a little town called Texas.
Bill Gasiamis 50:56
Texas, Australia, classic.
Karen Quickenden 51:00
Yeah. So that’ll be my weekend.
Bill Gasiamis 51:04
I love it. It’s so lovely to meet you. Thank you so much for joining me, willing. Oh, that’s alright. I really appreciate it. I’m just curious, actually, before we go, you know, that glove, how? How have you liked it? Does it work? Well, what’s the situation with it?
Karen Quickenden 51:22
Oh, it’s great. It puts your hand out and sucks back, out and in out and in. I do that for however long.
Bill Gasiamis 51:33
Is that your right hand? Can you bring it up? Okay, so it’s normally in that position, and then when you use this, it helps to straighten it?
Karen Quickenden 51:47
Yep, straightens it out.
Bill Gasiamis 51:49
And have you found that as a result of using this, your hand has improved?
Karen Quickenden 51:54
Yes, and they keep the second skin on it as well, and it sits probably like that. There’s skin on. When I don’t have the second skin on, it sits like that.
Bill Gasiamis 52:10
Okay, so that, so your hand with this opens up, and even though you’ve got that second skin on, this, can still go over the top.
Karen Quickenden 52:18
I take the second skin off and use it. And it’s great. It’s well, you couldn’t tell. It’s just fantastic.
Bill Gasiamis 52:36
Okay, and your hand hasn’t been like that since day one. Yeah. Yeah, okay. And have you found out that it’s more flexible and opens better and closes better since, yep, yep. Did that change with the etanercept injection as well? Did it improve?
Karen Quickenden 52:56
Probably a little bit, but not as much as the machine. I suppose you could put it as if it’s getting repaired. It’s like the shoulders working. It’s making its way down to the hand. It’s about elbow mark at the moment, it’s still got a fair bit to do, but.
Bill Gasiamis 53:23
So does the work at the other end?
Karen Quickenden 53:25
Yeah, it’s so good.
Bill Gasiamis 53:28
Alright, it’s good to know I haven’t met anyone who’s used it, so that was really cool to know that you use it. And also, yeah, the guys are sponsoring the episode, so that’s really cool. So honestly, thank you so much for joining me on the podcast, sharing your story. I wish you well in your recovery, and I hope everything goes well. Congratulations on all your achievements. Thanks for sharing your story about the etanercept, and it’s all been amazing. Thank you so much.
Karen Quickenden 53:55
Yeah, that’s alright.
Bill Gasiamis 53:58
That was Karen Quicken then sharing her incredible recovery journey from colliding with a police car on the day of her stroke to regaining independence and hope through Dr. Tobinick Stroke Treatment, her story is a powerful reminder that recovery is possible in ways we might not expect. Remember to subscribe to the recovery after stroke podcast so you never miss an episode.
Bill Gasiamis 54:21
And if you’ve found this conversation helpful, consider supporting the show through Patreon. Your support keeps this resource alive for stroke survivors worldwide. Finally, remember to check out my book, The Unexpected Way That a Stroke Became the Best Thing That Happened. It’s available at recoveryafterstroke.com/book, and it’s all about how to move from struggle toward post traumatic growth.
Bill Gasiamis 54:45
Thanks again to Banksiatech for supporting this show and episode and for helping stroke survivors improve hand function with the Syrebo Hanson rehab glove. I’m Bill Gasiamis. Thank you for joining me and remember. Remember, you’re not alone on this journey.
Impact on Family and Daily LifeIntro 55:02
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed.
Intro 55:18
All content on this website and any linked blog, podcast or video material controlled. This website or content is created and produced for informational purposes only, and is largely based on the personal experience of Bill Gasiamis. The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.
Intro 55:41
The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content.
Intro 56:03
If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional. If you are experiencing a health emergency or think you might be call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.
Intro 56:20
Medical information changes constantly. While we aim to provide current quality information in our content, we do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide, however, third party links from our website are followed at your own risk, and we are not responsible for any information you find there.
The post The Stroke Treatment That Worked For Karen Quigenden appeared first on Recovery After Stroke.
What would you do if your family was told you wouldn’t recover, and you lay unconscious for four months?
That was the reality for Mark Bragg, a Canadian musician whose life changed when an arteriovenous malformation (AVM) caused a devastating brain bleed. At just 48 years old, Mark’s love of music was replaced by survival, and the one thing that kept him alive was something most of us know little about: a brain shunt.
What Is a Brain Shunt?A brain shunt is a small medical device designed to redirect cerebrospinal fluid away from the brain into another part of the body, usually the abdomen. This prevents dangerous fluid build-up known as hydrocephalus, which can cause swelling, pressure, and further brain damage.
Brain shunts aren’t perfect — they can fail, get blocked, or even become infected. But for people like Mark, they’re often the only option to stay alive after a severe stroke or bleed.
Mark’s case shows just how fragile and life-saving a brain shunt operation can be. His first two shunts became infected. The third one finally worked, and it gave him a chance at recovery.
Four Months UnconsciousWhen Mark’s brain bleed struck, he collapsed at home with his child nearby. He was rushed to the hospital, and doctors placed an external ventricular (EV) drain to relieve pressure. His family was told not to expect a recovery.
He remained unconscious for four months.
During that time, his wife and parents became his advocates. They could tell when something wasn’t right, even when he couldn’t speak for himself. Twice, they noticed signs of infection in his brain shunt before doctors did. Those observations may well have saved his life.
It’s a reminder to every stroke survivor and caregiver: advocacy matters. Having someone by your side who speaks up when you can’t is critical.
Living With a ShuntWhen Mark finally woke up, the road ahead wasn’t easy. He had to relearn how to walk, how to use his left side, and how to speak clearly again. His brain with hydrocephalus was now supported by a shunt that kept fluid flowing.
But living with a shunt comes with its own challenges. Fatigue, the risk of infection, and constant monitoring are part of everyday life. For Mark, the shunt isn’t just a medical device; it’s a reminder of survival.
Yet, as he often jokes, it’s also part of his “sexy bald head.” That humor and the ability to see his scar as a badge of resilience help him keep going.
Music, Loss, and AdaptationBefore the stroke, Mark lived and breathed music. He wrote songs, performed live, and even scored films. After the stroke, he faced the painful reality that his voice and hands didn’t work the same way.
He mourned that loss, but he didn’t stop. With the help of speech therapy, he learned creative hacks like picturing words “on a string” to get them flowing again. With his father a hobby musician, he found new ways to play and create, forming a unique bond through music they never had before.
Even when you lose something you love, recovery offers the chance to discover something new.
The Power of SupportOne thing that stands out in Mark’s story is his support network. His parents, both in their 70s, stepped up daily to help with his rehab. His wife became his strongest advocate and found her own therapy in daily ocean swims — even in freezing Atlantic waters.
His local music community also rallied, hosting three sold-out fundraisers where fellow musicians performed his songs while he watched from his hospital bed.
Stroke recovery is never a solo effort. Family, friends, and community form the foundation for progress.
Lessons From Mark’s Brain Shunt StoryMark’s journey is more than a survival story. It’s a roadmap for others facing the uncertainty of a brain shunt for hydrocephalus or recovery after stroke:
- Advocacy saves lives. When shunts failed, his wife noticed before doctors. Caregivers are vital.
- Recovery is emotional as well as physical. Mourning what’s lost is part of the process — but so is finding new ways to live.
- Community matters. From fundraisers to family routines, support systems carry survivors through the hardest times.
- Resilience takes many forms. Humor, creativity, and acceptance turn fear into strength.
Could a Brain Shunt Help You Understand Stroke Recovery?If you’ve ever wondered “what is a brain shunt?” or what it’s like to live with one, Mark’s story shows the reality: it’s both a medical miracle and a daily challenge.
“I wasn’t supposed to wake up. But I did. And now, every day, I keep moving forward.” – Mark Bragg
Brain Shunt Recovery: 4 Months Unconscious and a Family’s Fight for HopeUnconscious 4 months after stroke, Mark’s brain shunt recovery shows how family, music, and resilience defy the odds.
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Highlights:
00:00 Mark Bragg’s Life Before the Stroke
04:50 First Seizure and Diagnosis
13:10 Experiencing Dissociation
19:30 The Day of The Stroke
29:15 Affected Speech Recovery
34:51 Inspiring Other People
44:35 Challenges and Support Systems
57:29 Psychological Counseling and Coping Mechanisms
1:08:38 Positive Impacts of The Stroke
Transcript:
Unconscious 4 Months – Mark Bragg’s Life Before the Stroke
Bill Gasiamis 0:00
Bill. Hey, there. It’s Bill Gasiamis, welcome to another episode of the Recovery After Stroke Podcast. Stroke Recovery is never easy, but sometimes the challenges are bigger than anyone can imagine. Imagine being unconscious for four months after a stroke while your family is told not to expect recovery.
Bill Gasiamis 0:19
That’s exactly what happened to today’s guest, Mark Bragg, a musician, a husband and a father. Mark’s life was saved by a brain shunt, and his story is about resilience, creativity and the power of family and community.
Bill Gasiamis 0:35
But before we dive in, I want to share something that could help in your own recovery. One of the biggest struggles after stroke is getting the hand working again, and stiffness and the loss of movement and the frustration of not being able to do simple things like holding a cup or writing.
Bill Gasiamis 0:53
That’s where the Hanson Rehab Glove by Syrebo comes in. It’s a smart glove that helps retrain your brain and hand together right from your home, whether you’re early in recovery or years down the track. It supports Neuroplasticity and hand function in a way that’s practical and motivating.
Bill Gasiamis 1:11
The glove is available to order right here in Australia and can be shipped internationally too. I love being able to bring solutions like this to my listeners, because having the right tools can make a huge difference. You’ll hear more about it later in the episode. Now let’s get into my conversation with Mark.
Bill Gasiamis 1:30
Mark Bragg, welcome to the podcast.
Mark Bragg 1:33
Happy to be here.
Bill Gasiamis 1:34
Happy to have you here, sir. Tell me what was life like before stroke, what did you do? How did you occupy time?
Mark Bragg 1:43
I’m a musician, and to occupy my time, I barely did anything, because as a musician, your time is very flexible. That’s not entirely true. I would write songs, and record, and tour as well. But since the stroke, currently I’m not cable and performing was my favorite thing, generally, performing like locally or outside town.
Bill Gasiamis 2:19
Was that your full time gig you performed. You were a musician full time?
Mark Bragg 2:25
Yeah, often writing like film scores and stuff like that for like that paid better than writing your own music and selling your own music. But that was the latter, was kind of my passion.
Bill Gasiamis 2:42
So you are fully embedded in all things lyrical, music, notes.
Mark Bragg 2:49
Yeah, well, not notes like, not dots.
Bill Gasiamis 2:53
No, but, but the whole thing, you know, from somebody who doesn’t understand music, you were into the whole entire thing, beginning to end, composing, getting it all finished. I would imagine editing it and then working out all the.
Mark Bragg 3:11
And being a band leader, that was a huge part of my gig as well, which was great. I had a lovely band.
Bill Gasiamis 3:24
Something wrong with your eye?
Mark Bragg 3:26
Yeah, just sometimes the eyes, like, I get watery eyes, but that’s about it.
Bill Gasiamis 3:37
Okay, so then, how old were you when the stroke happened?
Mark Bragg 3:46
48.
Bill Gasiamis 3:50
And would you say there was anything in your awareness that may have enabled you to see that things were not right, that there was something wrong.
Mark Bragg 4:03
Oh, yeah, I from all my seizures for the past few years. I was aware for all of them, and I was aware of what was happening in the stroke itself. I was certainly aware that was happening. I would lose consciousness at some point. But generally I always knew something was going on when either of these events took place.
Bill Gasiamis 4:35
Were seizures, something that happened to you, generally speaking, on a regular basis?
First Seizure and DiagnosisMark Bragg 4:41
The seizures were somewhat monthly at one point, but not really on a regular basis. But the stroke clearly was not on a regular basis. That was something that happened after my brain bleed.
Bill Gasiamis 5:03
When was the first time you had a seizure that you know about?
Mark Bragg 5:08
It was June 2019, and that’s when they discovered my AVM, because I was playing with my dog, and then I felt myself, you know, something not right. And then I collapsed and woke up in a hospital, and that was when I got my first scan.
Mark Bragg 5:32
And that’s when they discovered the AVM. And so at this point, that was my first seizure. So we did some consulting with my neurologist, and we decided, I decided I wanted this AVM out any way possible. So what we decided to do was go to Sony Brook that’s the hospital in Canada. So we went up there for a Gamma Knife radiation treatment.
Bill Gasiamis 6:10
And was that successful?
Mark Bragg 6:14
Yes and no. It seemed like, it seemed, at the time, that the that, after a year or so away, that it was looking like that, the AVM was stable, but hadn’t shrunk very much, so the next course of action would have been steroids, but that didn’t show any decline in the AVM.
Mark Bragg 6:46
So after that, I went into it for hyperbaric treatments, which is that is used to treat, you know, divers with the bands, for example. And I think it speeds up recovery from small tissue damage. So that’s as far as I know about it. And when we were deciding to do that, there was always a risk of radiation necrosis, which would be kind of scar tissue from the radiation.
Mark Bragg 7:30
But things were looking good, until about a year later, I was seizure free for about a year. But then another seizure happened, which was the result of that scar tissue, and from then on, there had been, like, various, you know, seizures and like, maybe around monthly and then now it’s always at risk for a brain bleed at that point because of the AVM. So not too long ago, I had my last CV release party, and two days after that, it’s when I had my stroke. And it’s been recovery since then.
Bill Gasiamis 8:21
What year was that?
Mark Bragg 8:25
That was in 23.
Bill Gasiamis 8:38
So approximately two years ago. Did you know the seizures were coming on? Did you have a feeling that the seizure was about to happen, or did they just catch you unawares?
Mark Bragg 8:56
They catch me unawares. But since I was so conscious through the whole business, it would just start happening, and I had no control, and I could still I can see myself doing the kind of shaking and that would be, even be conscious throughout the seizure itself.
Mark Bragg 9:19
I’d be on the ground, like shaking. I feel my legs start to shake, look down, and I’ll be like, when I start I’m having a seizure, like I might be trying to call out for some help, but the like, the words wouldn’t come out, the ones that I’d hoped for. So by after that point, it was kind of game on, and then I was deep into it, and it was terrifying.
Bill Gasiamis 9:50
Uh huh, terrifying, painful as well?
Mark Bragg 9:52
No, no pain. Just fear because you didn’t, you couldn’t control. Anything, and you didn’t know when or if you were going to come out of it, because you didn’t have control of your body, and so how could you know you can’t feel yourself like you got no sense of whether or not it’s going to come out, all you can do is try to convince yourself of the last time was I came out of it after a while. But that doesn’t mean that this time was going to be the same. So you had no way of knowing whether it would be the same.
Bill Gasiamis 10:38
Do they have a rough duration?
Mark Bragg 10:42
Yeah, I believe it was between three minutes and five minutes, but my first one, that was the one that took me into the hospital. I believe was certainly longer than that.
Bill Gasiamis 10:58
We’ll be back in just a moment with more of Mark’s remarkable story, from mourning the loss of his singing voice to rebuilding music and meaning in new ways. But first, I want to tell you more about the Hanson Rehab Glove by Syrebo. One of the toughest parts of recovery is when your hand just won’t cooperate.
Bill Gasiamis 11:17
The glove is designed to solve that problem, gently assisting your hand to open and close, helping your brain reconnect with those movements over time. It supports Neuroplasticity, the brain’s ability to rewrite itself after stroke, if you’re being stuck in your recovery and waiting for something to help at home, this might be it. The glove is available here in Australia, and can also be shipped internationally.
Bill Gasiamis 11:42
Check out the links in the episode description, or head to Banksiatech.com.au, for more details. Now, back to Mark. Okay, and then after the seizure passes, is, do you bounce back? Is there a recovery? How does that work?
Mark Bragg 12:01
Yeah, no, I bounced back, but I’m quite fatigued after the seizure and the following day, mostly just fatigue.
Bill Gasiamis 12:13
And in 2019 that’s taken quite a chunk up of your well, of your time, I imagine, and it’s interfering with the passion and the work that you do, which is your band and your daily life. Did it start to impact daily life? Regularly?
Mark Bragg 12:41
Not so much. My daily life kind of went down because the seizures wouldn’t take. It was like I said. It was only it would take. They would only last about three minutes. There would be around a day of recovery. I’ve never had a seizure on stage or anything like that.
Experiencing Dissociation After Being Unconscious 4 MonthsMark Bragg 13:10
But yes, it just occurred to me that the severe anxiety would certainly take a lot of like it made like everything almost next to impossible. I had a what was called dissociation from the severe anxiety, which, as far as I understand it, to be a protective mechanism, if for severe Have you heard of that before yourself?
Bill Gasiamis 13:44
Dissociation? Yeah, in my understanding of it is in extreme cases, people are not sort of attached to reality.
Mark Bragg 13:56
That’s right. So in terms of my understanding of it based on talking to my psychologist, it’s almost like protective mechanism from bygone days when we were a caveman, for example, and we were being eaten by a lion for example, not like not being chased by a lion, but, you know, being fucking eaten by a lion and and then you can’t be present for that, that’s not possible.
Mark Bragg 14:31
So that’s the way I understood it to be. And also, I suspect, shell shock if you’re in like, ran bombs and stuff and that kind of culture. I certainly know that for me, the dissociation would come on. Like every morning I wake up and think that, and feeling feeling okay, and then I tell myself, hmm. Maybe it’s not going to come on today, because it’s just a mental thing.
Mark Bragg 15:04
And then I go downstairs to put my shoes on, and then I realized that, oh, here we go. The shoes are on, and I’m going to open the door and then going to be this again. So I opened the door and I had that exact same feeling that you described, and but I’ve had to force myself to get through it, like to keep walking outdoors. And by this point, I came back to when I came back home, it’s still it was still happening.
Mark Bragg 15:39
And the funny thing about it is that it would continue up until myself and my wife picked out a touching movie to watch, like one that makes her cry, but not from sadness. It had to be touching. So for some reason that connected me back to myself, and then when I got back to bed. Things were things were fine by then.
Bill Gasiamis 16:05
Wow, man, that is such a cool hack that you even worked it out. How did you work out that the best medicine here is a soppy rom com?
Mark Bragg 16:15
It was bizarre. Yes, it was like a lot of Tom Hanks during those couple of months.
Bill Gasiamis 16:22
That’s enough to make anyone cry. I like it. Okay, so you didn’t watch Saving Private Ryan, for example?
Mark Bragg 16:32
No, I probably wouldn’t watch that anyway.
Bill Gasiamis 16:36
Yeah. Okay, good. I understand. So, what? Forrest Gump then?
Mark Bragg 16:45
Yeah, yes, that’s what we’re talking about.
Bill Gasiamis 16:48
I love it. Okay, I can manage Forrest Gump type of movies, that’d be awesome. Wow, man. So there’s a lot going on there. You’re having a physical experience, say, back then you could feel the actual the seizure. Then when you’re in the seizure, you have an awareness that you’re in a seizure and it’s happening, and you’re out of control of your body, but you’re in control of your mind, your thoughts.
Bill Gasiamis 17:23
And they’re kind of going, This could last forever. We don’t know how long we’re going to be here for panic. Be afraid, be all these things very normal, yeah. And then also after that, then you have to wake up in the morning, and then you have to go to your day, and then you have to overcome the thoughts of this might happen again in my day.
Mark Bragg 17:47
Not the seizure.
Bill Gasiamis 17:51
Yeah, not the seizure? You weren’t concerned about the seizure. You’re concerned about what is going to happen again?
Mark Bragg 17:58
The association. Like, I’d be walking out the door concerned that that would happen. It would happen because I made it happen myself based on it being a mental disorder.
Bill Gasiamis 18:18
But it’s sort of like instinctive at the same time, because you want to protect yourself from the lion.
Mark Bragg 18:26
Yeah, pretty much, because I was afraid that was, that it could happen at any point. So you’re trying to protect yourself from that.
Bill Gasiamis 18:37
Okay, so you’re trying to protect yourself or your mind? Because it seems like you’re protecting the way you’re thinking about that. It feels like you’re protecting the way you’re, you’re observing that somehow.
Mark Bragg 18:55
Yeah, I really have no idea that it was like protecting while it was happening, until it was explained to me by my psychologist, and she recommended that, or she suggested that that would be kind of a defense mechanism for the kind of things I was talking about. But it felt like a war zone when I was outside, because I could be attacked by my body at any second.
The Day of The StrokeBill Gasiamis 19:30
Okay, understood. So on the day of the stroke, was it a normal day? You’re just going about businesses per normal. And then what happened?
Mark Bragg 19:42
Then, I believe I was home with my kid at the at that very time, and I started to feel a very strange feeling come over me, and it wasn’t. It felt like it was a seizure, but it wasn’t so. So this was something very different, and so I had enough wherewithal to call my wife when this was happening, and she came home to see the like what I was at, basically because I was afraid, but that was I kind of went out thing, because that was the brain bleed. That was when it happened. So I believe we call we called them ambulance at that point and went to the hospital, and then they discovered that that was the case, so then they had to operate.
Bill Gasiamis 20:48
Okay? So you went into operate? Did they go in to remove the blood vessel, the faulty blood vessels, the AVM, is that what they went to do?
Mark Bragg 20:58
Just give me one second, my wife is
Bill Gasiamis 21:02
Your assistant.
Mark Bragg 21:09
Yeah, so then it was an EV drain that was kind of installed in my brain to drain out the blood here’s the scar from my EV train, yeah, it’s part of my sexy bald head. So that’s, yeah, that’s one of my scars.
Bill Gasiamis 21:30
That’s a really well shaped head.
Mark Bragg 21:33
Oh, my God, that’s why, that’s why I get away with all this. Those scars are our best kind, but my shunt itself is magic.
Bill Gasiamis 21:44
Yeah, so you’re in hospital, they’re draining the blood, and are you other than the initial bleed that issues that obviously blood in your head causes and the drain that they put on there? How long is the hospital stay. What is the prognosis? What happens after the bleed in the brain?
Mark Bragg 22:06
My prognosis was not good. I was told my family was told not to expect a recovery, and that I was unconscious for about four months.
Bill Gasiamis 22:25
Wow, yeah, was that a medical induced coma, or was it a Mark Bragg induced coma?
Mark Bragg 22:34
It was a mark Bragg induced coma.
Bill Gasiamis 22:36
Wow, man. So then, how do you come out of that? What happens at the four month mark that makes you wake up?
Mark Bragg 22:46
The third shunt took like the first two, they could tell or sorry, they became infected. But I was added with it anyway. But somehow I was noticed that I still wasn’t myself. It was kind of magic, like I was completely fucked up. But even while unconscious, the she could tell that at that point that it wasn’t me. So this was the first time my shunt became infected. So then the second one also became infected, and the third one took I get work.
Bill Gasiamis 23:33
Okay, so the idea of the shunt is to do what? What Is it meant to do?
Mark Bragg 23:39
It keeps things flowing. It basically sends it down, as opposed to getting caught up there.
Bill Gasiamis 23:56
Okay, allows the cerebrospinal fluid to continue to flow and not stay in the head, therefore causing additional pressure, and putting your brain at risk. Okay, so after surgery, the solution is to install a shunt, and then that shunt doesn’t take it gets infected in that time, even though you’re out cold, your wife is so great. She’s so amazing that she noticed that even in your comatose state, you were not yourself.
Mark Bragg 24:33
Like having an advocate.
Bill Gasiamis 24:38
And you think you are good, like, Oh, my God.
Mark Bragg 24:42
I’m good, not as good as her.
Bill Gasiamis 24:46
No chance. And then, it happens a second time. She again, and the doctors and everybody notices that the second shunt that they put in is not taking and is also infected. And I imagine, during. Infection that’s really impacting you negatively, personally, your body, your brain, your whole system, is absolutely coping with all of the all of the trauma plus the infection.
Mark Bragg 25:12
Yeah, there’s a lot going on there.
Bill Gasiamis 25:14
And then the third shunt takes, wow, isn’t it amazing that we are even here talking?
Mark Bragg 25:25
It is I was not meant to be here talking. No way.
Bill Gasiamis 25:30
I would say you were meant to be here talking.
Mark Bragg 25:33
If you say so.
Bill Gasiamis 25:34
Yeah, because all of the stuff they had to go through to get you over the line, these people who you’ve never met before, and not even the doctors and the medical guys, like even the person who invented the shunt, even that person, what the hell is that? Who does that?
Mark Bragg 25:54
I know I never thought about that myself, but you’re right.
Bill Gasiamis 26:02
Let’s just put something in the guy’s head and make it help things flow. Why not just it is just fascinating to me. I love that idea. I love the fact that that is even possible, and all these things conspired to get you here.
Mark Bragg 26:22
Yeah, it’s amazing.
Bill Gasiamis 26:25
That’s a good thing. That’s great. It’s a great outcome. I really love it. So then when you wake up after four months, do you have first thoughts? Do you have any idea what’s going on, what happened, what you’ve been through.
Mark Bragg 26:42
It was, it’s, funnily enough, I was still nice there messed up, but I had, I’m there were people coming and going and but there was an old friend of mine who said something like, the first thing that I remember and feeling like I was going to be okay was this friend of mine saying something ridiculous about an old girlfriend of his that he used to harp on.
Mark Bragg 27:06
And then I used to always give him piss over it. And then he said, so again. And then I was like, well, you thought fucking talking about Jane Scott, for example, and and then we started laughing at it. And at that point, I kind of realized that I was going to be okay.
Bill Gasiamis 27:41
How long did it take for you to get back on your feet? Because I imagine if you’re lying still in a bed for four months, everything gets weak, the muscles stop working and rehab.
Mark Bragg 27:56
There’s a lot of you know, trying to get the brain’s connection back to your ligaments, like trying to get, like I noticed. The first thing I noticed, like as I was coming back, like his hands, like scratching on the couch, and then somehow I managed to have somewhat of control over that. So that was after, after rehab, when I was home.
Mark Bragg 28:35
Of course, there was a lot of gains made in rehab as well, which were great, like we did tons of work in rehab, about mostly work on my left side, which was impacted more so than my right. But there were the phase heroes. There were amazing. So you can add those to your list of incredible people that get me here, and the OTs and all that stuff that was also huge part of the rehab and the recovery.
Affected Speech RecoveryBill Gasiamis 29:15
The team, the teams that get together To make somebody go back home is just unbelievable. So your speech was also affected?
Mark Bragg 29:32
Yes, it was that’s getting a lot better the more I use it. And funnily enough, it can almost sometimes get downright normal, unless I’m, you know, trying to talk loud or interject myself in a conversation, which I always had the skill to do with no problem at all. But now as I talk louder, it kind of comes back a little bit. And if I’m talking, you might even know it now that it becomes more halted, because I’m concentrating on it, which is a strange brain thing.
Bill Gasiamis 30:16
When you’re paying attention to it, it kind of gets a little more labored. But when you’re not aware of it flows better.
Mark Bragg 30:24
When I hear something hilarious that I learned in speech therapy. It was one of the things we were taught, was that if you’re having trouble with your words, picture them on a string and pretend there was make them one work. So one of the first things, one of the first videos I made when I got home was one of the things I stumbled over was some, for some reason, I was saying all this eggy shit when I was cooking something. And so what I did was I pictured it as one word, all this eggy shit.
Mark Bragg 31:04
So I practiced that as one word, all this hanky shit. And then that one came back to me. So anytime when I was going around chatting with people, and I’d get those halted things happening, I stopped trying to picture them as one word and be able to get, like, somewhat Get it together. Like, just say, I stumbled over that. For example, some might get it together, some might get it together, some might get it together. You might even hear that change as it goes, change as it goes. You might even hear that change as it goes. Change that’s cause. So I just picture them as one word, it’s fascinating.
Bill Gasiamis 31:50
It is fascinating. How do you who works, who worked that out? How do you work that out?
Mark Bragg 31:57
I kind of in some ways. It was a speech therapist who had the who demonstrated these kind of words on a string kind of thing. But it was when I got out of that therapy, I realized what she meant by that, and then when I started to interpret the meaning to be, create one word out of a bunch of ones that you stumbled over.
Mark Bragg 32:30
Create one word, create one word, over a bunch you stumbled over, over a bunch you stumbled over. So I practice them every time it would happen. And so I was able to interpret that words on a string and the kind of graphic she gave me, that that’s what she what she really meant, and to make it work for myself.
Bill Gasiamis 32:53
Profound, amazing. I love that. I love that that hack that way to solve that problem, right? Such a cool hack. You seem the really upbeat kind of guy, but this was really a tough time. It was there any moments where you thought, Oh, this is really terrible. I don’t want to be in this situation. I want my old life back. Did you have moments like that?
Mark Bragg 33:23
Yes and no, I was never, I kind of never lost my like, I didn’t change at all. But there would be, I’d certainly have hard moments where I felt like I didn’t like it was hard to be this way, but by and large, I was helped to, like I hit acceptance not didn’t take me as long as some some might, because I had had, I went through All of that stuff with the dissociation, and stuff had therapy through that, and I’ve learned all those skills prior to the brain bleed.
Mark Bragg 34:10
So I was able to use those skills after the brain bleed. And there was certainly a mourning process for the functionality that you have lost, but that after you mourn it, it’ll turn to acceptance, which I did, and I was able to kind of enjoy certain aspects of it, like the like putting out videos of my games and stuff like that and that, because I’m a little bit performative anyway, as was my career.
Inspiring Other People
Mark Bragg 34:51
So I did enjoy sharing videos about my rehab and people I think I. People would always share that it was helpful for them. Like, if I’ve taken a video of like me kind of trying to dance, for example, I get messages on Facebook about you just inspired this 90 year old woman to get up and dance for the first time in a long time, so I’d get a lot of that kind of feedback.
Bill Gasiamis 35:30
Wow, man, it’s interesting to to note what you just said about your crazy need, desire to perform in any way possible. But that’s very selfish, selfless. That’s about you more than anything. However, in that moment when you make it about you and you turn it into a performance, you involve the other person, but then what also happens is you inspire people you didn’t know you were going to inspire.
Bill Gasiamis 36:15
It is the classic musical experience. I go to a gig, you’re performing. You want to entertain your you want to perform. You want to be you want to do you. You want to express yourself in this way on stage. And then I get I somehow become part of the act. I couldn’t be part of the act on the stage. It wouldn’t work.
Bill Gasiamis 36:40
If I turned up to a gig and stood on the stage, I wouldn’t be able to create the loop that needs to occur for the entertainer and the audience to interact the way that we do. It’s huge, and you’re doing that somehow is seen by somebody who is 90 years old and thinks that I just needed to see Mark doing his stuff for me to feel inspired to do my own stuff like it’s very interesting that that happens.
Mark Bragg 37:13
I find it interesting. It’s it’s a bummer for me, only, mostly in the sense that it’s not a live audience, because you don’t get that same kind of energy, but in a way, saying that is kind of foolish, like I certainly wouldn’t want to go out and perform my recovery, because that’s not, that’s not what I do, but, but it’s, yeah, it’s kind of silly, but I do know what you’re saying, and I enjoy it.
Bill Gasiamis 37:47
Yeah, it’s not about performing your recovery. It’s just about performing in whatever way you can. And therefore, it’s all tied into your recovery just because you’re performing in your current with your current ability. Yeah, and then, because people know your story encourages another person to take a recovery of their own in some way, a little way, you know, even if it’s not a stroke recovery, but say it’s just an old person’s steady decline to get up, yeah, that and move at nine after whatever they’ve been through, that’s a huge step.
Mark Bragg 38:31
Yeah, I appreciated all the feedback I got with from that stuff. For sure, I didn’t set it to inspire by any means. It was just kind of a random, random thing that people seem to share with or want to share with me as an entertainer.
Bill Gasiamis 38:57
What do you set out to achieve, actually? So my son, I’ve noticed my son, I followed my son discover guitar and then go on to play in bands and perform and do all that kind of stuff. I’ve never asked him this question, but I think I will. He’s 29 I’m going to ask him next time I see him. But what do you set out to achieve when you pick up an instrument and then find yourself on a stage. What’s the purpose of it?
Mark Bragg 39:26
For me, mostly in terms of songs. I write fiction. It’s kind of narrative songwriting as opposed to confessional. So I want to get up on stage and kind of relay or evoke the feeling of the kind of characters from that song. Not it’s not like acting per se, but it’s like the energy that comes from that story is, I want to try to do it justice.
Mark Bragg 40:00
So it there’s a whole lot of bombing around stage, screaming and like, it’s generally a high impact show, and so it’s quite fun in that way. So a lot of this material, and I do intend to make another album. It’ll it won’t look like that, because that kind of show is kind of pre stroke show. I do write kind of softer material as well, well, and I’ll likely be focusing on that going forward.
Mark Bragg 40:42
Another strange thing that happened to break this stroke. I I always, I never, ever expected to lose my singing voice, because you can keep that up into your 80s. But, like I learned about both vocal tremor, so that kind of messed it up a lot. Let me just demonstrate, so it’s ease, and it’s a not weird, so I can’t see my E’s and my A’s anymore is totally weird, and I was very disappointed about that, not not even disappointed.
Mark Bragg 41:26
But I kind of had to mourn that, mourn the loss of my musicality. Wasn’t just singing, it was also being able to play piano and guitar. That, though that said, with the work I’ve been doing, that starting to come back to some degree, but I found it really strange that this step to lose that type my singing.
Bill Gasiamis 41:53
You have to recruit some other vowels into your notes so that you can can You do a track that excludes A’s and E’s.
Mark Bragg 42:03
Yeah, well, I thought about that, but I don’t think it’s going to be necessary. I think if I lower the pitch from some of these songs, I might be able to work around it.
Bill Gasiamis 42:16
You might be able to.
Mark Bragg 42:19
I might be able to present it in a way with the tools that I have, it’ll work.
Bill Gasiamis 42:26
Yeah, so it’s interesting that you say that you want to evoke a feeling in your audience, and what you’re doing is you’re using your voice, you’re using your body, you’re using movement, you’re using the whole lot and and then you get people like Adele, who just stands on the stage and just blows everyone, yeah, everyone’s mind, body and soul, by singing the way that she sings, without but now that I’m thinking about it, she is also using her body. She’s also, no doubt, taking doing almost exactly what you’re doing. It just looks different because, yeah, it seems like it’s more stable.
Mark Bragg 43:13
Yeah, different material. Her material likely calls for the kind of vibe that you just described.
Bill Gasiamis 43:30
Yeah, and it’s I imagine once you do that, once the first time in your life when you nail it, that first time in your life, you know what it feels like to have achieved that with your audience, and then that’s it.
Mark Bragg 43:49
I lost my mind. Yeah, there was no turning back. I lost it. It was so amazing, that little bar in Newfoundland,
Bill Gasiamis 43:59
You know where you were. You know when it was. You know what happened, yeah. So your wife is now your personal assistant helping you remember things that you need to know, to share in the interview. For example, that we’re having right now were there other people that came to your rescue, that helped you out, that supported you kind of overcome this, as well as your wife.
Unconscious 4 Months – Challenges and Support Systems
Mark Bragg 44:35
Let’s tell talk about my parents. They’re like in terms of the amount of support they gave. They’re both 70 plus, and now they’re taking care of their 40 plus year old son while raising his brother who has autism. So they are incredible.
Mark Bragg 44:59
My dad is here every evening doing the physical workouts, and my mother is here quite often to for sleepovers. So if, if my wife needs to get a night out, which she does quite often, because I’m up to piss about 20 times a night, so she doesn’t get any sleep. So once a week she’s able to get some sleep. And my mom comes down for that. She’s on hand, generally for most anything.
Bill Gasiamis 45:35
I love that you guys have worked that out that it’s really important for your wife to get out of the house.
Mark Bragg 45:40
Yeah, it certainly is she. She also swims in the ocean like every like, all throughout the year, so it’s ridiculous, like the freezing North Atlantic.
Bill Gasiamis 45:56
Yeah. How cold does it get?
Mark Bragg 46:01
Minus three.
Bill Gasiamis 46:02
Oh, my God. How long did she swim in the waterfall?
Mark Bragg 46:10
Five minutes. That’s when it’s that cold, but longer if it’s not.
Bill Gasiamis 46:16
Wow, that’s nuts. Congratulations.
Mark Bragg 46:20
Bill says congratulations, but yes, she comes back a different woman. So it’s something I encourage very greatly.
Bill Gasiamis 46:38
It’s therapeutic in many ways for a lot of people.
Mark Bragg 46:40
Yeah, that’s what they said. I won’t be doing it.
Bill Gasiamis 46:44
I won’t be doing anything. I couldn’t imagine anything worse. Ah, just forget about that. If I, if I get stuck in the wilderness, I want it to be hot and I want to die of dehydration, not the cold. I don’t want it to be in a I don’t want to get stuck in a an ice cap on some mountain that thaws out in 1000 years and they find my crinkly body. I don’t want to be that guy.
Mark Bragg 47:13
I want to be be floated out on an ice pan so that I go that way, either that or one of the other very fast ways and non magical, non romantic ways to die. I’ll take one of those.
Bill Gasiamis 47:30
Just switch the light off. I’m just thinking about that, and it really does evoke pain and suffering when I think about the cold and being in the cold. I just absolutely hate it. It’s cold here in Melbourne at the moment, and it gets down to about overnight, four minus, sorry, four or five degrees Celsius, so not quite freezing, but and some mornings, you know, might get down to zero, and I just can’t get going, like it just takes ages for me to warm up and get going, and my left side gets even colder, and I feel it at night.
Bill Gasiamis 48:05
The entire rest of my body is warm and normal and calm and relaxed, but my left side, which is my affected side, just feels colder, even though the heater is on, even though it’s set at a temperature that’s extremely comfortable inside the house. My left side still gets cold. So, no, it’s not purple or anything. It’s not a different color. It’s just colder.
Bill Gasiamis 48:37
I don’t know. I didn’t get it. Nobody’s been able to explain it. I’m not expecting them to, but it’s a bit, it’s a bit strange. So I, I take my hat off to people who do those cold plunges. You know that are becoming popular now, yeah, and Wim Hof how he’s made millions telling people to go into cold bathtubs and all that kind of stuff and whatever. Man, that’s not for me. I can’t do but I appreciate other people doing it. Take my hat off to them. So your dad comes every night to take you through your rehab.
Mark Bragg 49:15
He used to go to the Miller center. Watch what they were doing, take notes, and then it start. Once I got discharged, he started showing up every night to repeat or to interpret those notes. Funny, story about the first time we set up to do that is he set up when the first time I climbed the stairs in my house. He had rigged up a pulley system, much like the one that you have if.
Mark Bragg 49:59
You were painting on a roof, you picked up, hooked all that stuff up, and shot me in and had one spotter, and then I made it up through the top of the stairs on these pulleys for safety. And it was just way too hilarious, but it was also exhilarating at the same time, because I made it up those steps. But, you know, moving forward, we were able to repeat that, that stuff, without a need for all that stuff. But it was, it was pretty incredible.
Bill Gasiamis 50:38
Your mom and dad been looking after your autistic brother. Is your brother able to be independent in any way? No, okay, so they’ve been solving problems, difficult problems, for a long time. Anyway, they know all about it.
Mark Bragg 50:55
They’re not technically looking after him right now, because he has caregivers and but they’ll still like to ensure his quality of his life. They’ll still take him out on outings. Like to do things that he loves to do, like riding bikes and going to like, hit their out of town cabin and giving them meaningful tasks like moving rocks and stuff like that. That’s pretty, that’s pretty. Like, hats off to them. That’s amazing. So fortunately, we both basically had an amazing upbringing, and we’re lucky to have done so, and now we’re still two little kids being looked after by our parents as adults, and they’re way seniors.
Bill Gasiamis 51:53
Yeah, it’s just that’s so good that they’re able to be able to perform that function, you know, to be able to do it at their in the in their older age, there’ll come a time where they’ll need to step back more and more. But wow, what a job they’ve done so far.
Bill Gasiamis 52:15
I remember my parents as well. You know, I was 37 they were in their 70s, early 70s, when I went through my first, second and third bleed. And they Yeah, they were just all over, all over it. They were just rallying around and doing all the things to do. Luckily, we lived close to each other. Do you live close to your parents as
Mark Bragg 52:47
15 minute drive.
Bill Gasiamis 52:52
Okay, that is close. Okay. Should I believe anything you’ve said so far?
Mark Bragg 53:01
Mostly.
Bill Gasiamis 53:01
Yeah, because you’re very convincing. Even if they were all lies that you’ve said so far, it’s all convincing. So I’m good with that. Yeah. So what were some of the biggest challenges that you faced, some of the biggest things that tested Mark Bragg, you know that really kind of went after you.
Mark Bragg 53:25
I think I didn’t have a ton of anxiety, per se. I’m not quite sure if it’s because of the skills or if it’s because of the drugs, like, who knows, but hopefully it’s the skills I’m talking about post bleed now, but the like prior bleed, it certainly would have been that dissociation, which I’ve described already, but post bleed, there was occasional moments that were certainly emotional when when the healing would pause or when it would slow down.
Mark Bragg 54:13
And coming to the realization that your music career as it was, is gone, but you know, it might be back in some, some way, shape or form. Well, it certainly will be, but that was kind of an emotional thing to deal with. But I do believe that in a lot of ways, I’m luckier than most, because I’ve had a lot of support.
Mark Bragg 54:46
I don’t know. I’m quite sure there’s people out there who’ve experienced similar things, who don’t have the same level of support that I do the support network. Work which I think that that would be quite hard, but I’ve been really well taken care of by my family and the medical professionals. So I’ve gone, what was your question again?
Bill Gasiamis 55:18
That’s okay. It was, well, what were the things that tested you the most? You answered that and then, and then you kind of gave me a reason why you’ve been able to get through that. And the people who have been through something a little harder or had less support, etc, also report finding ways to get through, finding ways to overcome, and even though they may not have that type of support that you mentioned, with regards to the people that were around you.
Bill Gasiamis 55:50
They were still able to access somebody who stepped up for them, or they were still able to make meaningful relationships with people that turned up out of nowhere. That’s some of the really cool things you hear. Some stroke survivors who don’t have the type of family support that we might have experienced will say that out of nowhere came people that they never thought would or expected with food, you know, with can I help take you to one of your appointments or whatever.
Bill Gasiamis 56:23
So you do see these amazing things occur and people step up when you least expect them. Just it just says a lot about community, right? Being somewhere where you have embedded yourself, and you get to know people, and people get to know who you are and get to see you. And as a result of that, that that create, creates an opportunity for people to step up out of their usual routine and do something for somebody else. It inspires that.
Mark Bragg 57:00
Yes, I should also note that in my music community, they organized fundraiser for me with three sold out shows, and they were all people performing music from my catalog, and I was in the hospital, watching the live stream on my laptop, and that was pretty magical, too.
Psychological Counseling and Coping Mechanisms
Bill Gasiamis 57:27
Yeah, that would be amazing. That would be so inspiring, and also create a lot of hope. You’re in hospital, and the people are all these people around, rallying together for you. That would have been a real motivator. How has psychological counseling helped you? I’ve been to counseling from the age of about 2728 and I still go. How has it helped you?
Mark Bragg 57:56
Mostly skills, how to observe your thoughts and respond to them, as opposed to react. Those were the biggest takeaways, and they take it takes a lot of practice and learning that you have to practice that in order to use those skills, that was huge for me.
Bill Gasiamis 58:27
Yeah, how? How long have you been? Been going to counseling.
Mark Bragg 58:37
Four years, for roughly four years.
Bill Gasiamis 58:39
Okay, so the first time you started to encounter some of the challenges that you’ve been through, Exactly Okay, and they was that essential to help guide you through this difficult time.
Mark Bragg 58:55
It was essential.
Bill Gasiamis 58:59
What does the counselor offer that your spouse doesn’t?
Mark Bragg 59:04
Well, she’s professional, yeah, so that it’s nice to have a professional to talk to about your You know, what’s you know here? And funnily enough, this, this particular counselor that I had is specializes in medical trauma, so she really knows what she’s talking about when we’re talking about medical related, you know, trauma, traumatic events.
Bill Gasiamis 59:41
Yeah, I love that. And your wife is not it’s not her expertise, and that’s not your wife’s expertise. I’m trying to paint the picture as to why it’s necessary to see a counselor, as opposed to try and get all of that from a spouse. Because our spouses, my wife, she had no idea what stroke was. When I went through it, she had no idea how to care for somebody.
Bill Gasiamis 1:00:06
She had none of that stuff. We had never done that, um, caring for kids completely different to caring for your incapacitated adult husband and and and then if I had to lay on her all of the psychological stuff as well. It would have been a massive burden for her to have to shoulder and to try and navigate because she didn’t have the skills right.
Bill Gasiamis 1:00:35
And I found that the counselor, for me was able to do the same kind of thing, is give me tools and skills and help me have a perspective that I wasn’t able to have in the home. You know, while we’re all going through it, taken out of the home, in her office or in her practice, she’s able to allow me to observe our situation and have a greater, more broader perspective than one that was narrow.
Mark Bragg 1:01:06
Yeah, I like having my wife be my wife as much as I can, and caregivers and medical professionals to provide that kind of care, I’d sooner, I mean, because obviously this kind of injury impacts your marriage in a lot of ways, because you need, like, a lot of a different type of care and a lot more care, and Then you’re also not able to do a lot of things that you would have been able to that may have been your responsibility before, before just the medical event. So as much as I can, I mean, this can’t always be the case, but as much as I can, I try to separate the kind of professional care I got from anything going on at home, because I’d rather be a husband than a problem as much as possible.
Bill Gasiamis 1:02:17
Yeah, I totally relate to that you’d rather be in your normal interaction with your wife in the house, you know, for example, and then outsource the medical stuff to the medics, the psychological stuff to the psychology people and so on, so that everyone has the task that’s specific to their capabilities and skills.
Mark Bragg 1:02:42
Yeah, there’s certainly a lot of or crossover too, but by and large, exactly what you said.
Bill Gasiamis 1:02:52
Yeah, and the crossover is necessary. There’s no way you can navigate stroke at home with your wife without talking the medical stuff or without needing some kind of little support or intervention or whatever that’s medically related. There’s no way you can do that, but I totally get it so how, how mobile are you these days with your affected side is, are you up and about?
Mark Bragg 1:03:22
Yeah, somewhat, it’s getting better all the time. I very I haven’t touched a wheelchair in ages, which has been pretty great. I’ve I’ve somewhat graduated to a cane from the Walker, and then part of my exercise routine is hobbling around on my two feet with no devices, and that’s so fun.
Mark Bragg 1:03:49
It’s just like you’re like, you’re a little toddler again, and like, I used to call it like my little like dad’s little duckling, because the foolish rock you do while you’re learning how to walk again, there’s I was so surprised that, well, not surprised, actually, but I found it hilarious when I did an Instagram video of me and my Friend walking around to 500 miles by The Proclaimers, I would walk 500 miles like that, that song, and then, and that was great fun in and of itself.
Mark Bragg 1:04:31
But then, if you watch it, you get your algorithm gives you suggestions to search for more funny baby videos. I couldn’t believe it. I was way too good for dancing videos, because we were goofing around, dancing, in essence, and I looked like a toddler. So I found that one Hello. It is, but it was great.
Bill Gasiamis 1:05:02
So you’re learning how to walk all over again, yeah. And it’s improving.
Mark Bragg 1:05:09
It is, yeah.
Bill Gasiamis 1:05:13
Improving a lot. And you’ve been months out of a wheelchair, and you went, you started from the wheelchair onto the walker and now onto a cane.
Mark Bragg 1:05:24
Yeah, as much as I can sometimes, like, if I’m waking up in the morning, I’ll need the walker first, you know, until, well, actually, I’m using basically nothing, because I’m essentially in bed the first half of the day because of all the drugs I have to take. But that, by and large, that like drunk drugs aside, I’ve that is kind of a graduation, like the ones you mentioned, yeah, like Walker came, and then wheelchair Walker came, and then independently walking.
Bill Gasiamis 1:06:08
Yeah, very cool. Tell me about all the drugs that you take. How what for? How many of them are there? And why does it take so long to to have the whole to go through the routine?
Mark Bragg 1:06:19
I can’t remember the amount, but the cocktail is mostly anti seizure meds, and they seem to be working, because I haven’t had a seizure in little, little over a year, which is huge for me, but kind of at the expense of fatigue, like throughout the first half of my day. But that said, Where seizures beget seizures like no seizures also, the opposite is also true. So if I go a year without a seizure, it might my neuro might deem it safe to be to slowly start weaning me off some of the pills, and maybe some of the pills that create this kind of fatigue.
Bill Gasiamis 1:07:15
Okay, so the blood vessel, the IVM, has that been sorted now? Because when you were in hospital, they had the shunt in your head. Is the blood vessel after the radiotherapy gone? Or is it still there one second? Are you running out of battery?
Mark Bragg 1:07:36
Yeah, I’m just gonna get that sorted out here. Yeah. You go ahead and talk and I’ll get it sorted. Okay, yeah, she’s gonna throw it out behind the scenes. George, what was the question about the AVM?
Bill Gasiamis 1:07:53
Yeah, so the actual AVM is it still there? Has it been resolved? Is it being gotten rid of after the radiotherapy?
Mark Bragg 1:08:03
We haven’t looked out of it in a while, but it is still there. And after having one bleed, it actually puts you at more risk for a second. But that’s that’s all, that’s all you can do about it, not not safe to do anything further. So basically, it’s just, this is the way I’m living right now. It’s, you know, it’s a risk. There’s also a risk to cross the street. So there’s so many ways to look at that stuff.
Positive Impacts of The Stroke Despite Being Unconscious 4 MonthsBill Gasiamis 1:08:39
Absolutely, and it’s probably in a spot that’s too hard to get to or too hard to do anything about, so it’s better to leave it there and monitor it, rather than try and go in and take it out and potentially make things worse. Yeah, yeah. Understood. Do you see the stroke as something that has shaped you in a meaningful way?
Mark Bragg 1:09:10
It changed my relationships a lot with my loved ones, and that’s quite meaningful for sure. And of course, it taught me a lot of things. It also kind of puts you, makes you a part of another, another community that like those with epilepsy or stroke survivors or almost any kind of things like that. And especially meaningful have been that the fact that I never understood anxiety and panic attacks.
Mark Bragg 1:09:47
I basically thought anxiety was stress and panic attacks was not being able to handle stress, but I certainly learned that it’s way, way. A different thing than that. So part of these medical my medical events, like that kind of stuff, wouldn’t have happened without my current medical events for sure.
Bill Gasiamis 1:10:14
You’ve become more empathetic. That’s really cool. I mean, that happens habits a bit as well, and it’s interesting. I’ve seen people have panic attacks, and it is, yeah, so strange and bizarre, and they’re all consuming. And as an outsider, it’s just like, well, what’s going on? Calm, breathe. Try and get them through. Yeah, I still don’t understand it, because I’ve never had one. I can’t say a panic attack. Okay, so it has been meaningful in many ways, your relationships. How did they improve? What did Did you do something to improve that was there areas that were lacking and you needed to work on and it made you work on them. How did that happen?
Mark Bragg 1:11:01
It might be kind of funny and embarrassing at the same time. My relationship with the old man, my father, took a full 360 we all. We always had a good relationship, but I didn’t see much of them. But this like we hang out every night now, and in kind of a hilarious way, like, I’ve been a professional musician for over 20 years, and he’s, like, been a hobby musician for maybe little over five.
Mark Bragg 1:11:36
So I’m in a musical way, our paths didn’t quite pass, or sorry, paths didn’t quite cross, so but during baymon gym, oh yeah, I gotta point out that Jim does not mean J, I, M, it’s not a name is G, Y, M, as in gymnasium. I don’t want people to think I’m off calling my dad Jim, because I’m not. But so we can’t in certain avenues. We kind of met in the middle because I had the music knowledge.
Mark Bragg 1:12:15
But I couldn’t operate my left hand very well, so we wound up jamming on all these songs, whereas dad doesn’t have like he’s a hobby musician, so he doesn’t have the same kind of music acumen that I have, but my hand doesn’t move as well as it should. So we kind of learn from each other in that regard. I find that hilarious that I got, and a bit my it took a stroke for me to start a band with my old man.
Bill Gasiamis 1:12:48
That is a bit hilarious. So your dad has got the all the will and the enthusiasm, you’ve got the knowledge and the and the foundation and the fundamentals, your hand doesn’t quite do what it was doing beforehand, as far as you know, helping you deliver the notes, but your dad has got the ability to deliver the notes. So together, combine all your strengths, you get something pretty cool.
Mark Bragg 1:13:22
Yes, we get something. Let’s just say we get something.
Bill Gasiamis 1:13:26
I love it. I love it. So what? People who are listening, right? Do you have some words of wisdom, some, some philosophical genius that you can impart on our listeners, the people watching on YouTube about how to navigate this whole crazy thing that they might be experiencing?
Mark Bragg 1:14:01
God, no.
Bill Gasiamis 1:14:07
We should pause. That’s probably one of the most profound statements I’ve ever heard. Honestly.
Mark Bragg 1:14:17
I mean the like, I think people figured out, like, who might tell somebody how to like, you know what to do. One of the things I hate the most is anything you need. I’m here for you. Like, that kind of puts the onus upon you to find out what you might need, and makes the person you’re trying to help.
Mark Bragg 1:14:47
Like, think about it which it puts them, it gives them a task in a way, like, if you want to do something for somebody, just do it. Yeah, that’s something I found really helpful. And also I was surprised at when I was, like, in my recovery, the like people reaching out, who to, you know, connect and to get offer their support.
Mark Bragg 1:15:25
And because there was so much of that going on at that time, I found it kind of hard to part like I was curious as to why, you know, people I didn’t see on the day to day would be reaching out to do so, because I wanted to hear from, you know, my friends and family so and I had, there was a lot of people reaching out because they thought it was the right thing to do, but it was annoying.
Mark Bragg 1:15:58
Like you only have so much time to to kind of like, healthy time, like, there’s, there’s a lot going on around that, like a lot, so to put somebody in the driver’s seat and make them think about what they might be able to do or help or even to acknowledge their messages when you’re in a mess and all you want to do is see your loved ones and your very close friends for their support, and then you get a deluge of people reaching out who want to connect with you at the same time. It was hugely annoying.
Bill Gasiamis 1:16:46
Yeah, the the guilt and the I better call because I feel guilty because I haven’t called people difficult, people to to navigate. For sure, I have a friend of mine who has probably done the most for me, as far as my friends goes, probably not, not, not that he’s done the most he doesn’t, but he did something really amazing and unexpected, and it was great now, but for three years, he’s been saying we should catch up.
Bill Gasiamis 1:17:26
And I’m like, dude, Christine and I, we have adult children. We are free all the time with half a day’s notice. We could drop everything. We could change all our plans, and we could go wherever you needed to go. We could catch up. But you’ve been telling me that for three years.
Mark Bragg 1:17:45
We don’t need to catch up ever like if you’re if you were good buddies, you can pick right up where you left off as soon as you see the person.
Bill Gasiamis 1:17:56
Which we tend to do. The thing is, I can’t get him. He can’t. He can’t move beyond the thought of, we should do something, go somewhere, spend some time together. He can’t get past that and do the next stage, which is commit to a day and a time, etc. However, I guess, no, he’s a he’s a great guy. I don’t know what his bloody problem is, but this is what shits me the most.
Mark Bragg 1:18:21
He’s done all this stuff for it. I forgot about that. It didn’t mean to call him a dick but he’s clearly such a.
Bill Gasiamis 1:18:29
He’s very compassionate, very supportive, very helpful, and in his own way, he stepped up majorly, right? And I wasn’t expecting it, and I didn’t, and I’m really grateful for it. However, when he interacts with me, it’s always lovely, except it’s always on the phone and yeah, we both have a desire to catch up in person with our spouses, with the kid, with all that kind of stuff, but he can’t just commit to the date and time ever, and it’s bizarre and strange.
Bill Gasiamis 1:19:01
However, what shits me the most about him is that he’s turned up to a funeral of somebody in my family, which is mental that I in three years i i caught up with him at a funeral which shouldn’t be the place where we’re catching up with people. And then the other thing was, because I’ve painting company, he got me to go over to his house and paint some walls. Yeah, that’s not how I don’t want to catch up with you like that, man, get another painter and don’t come to the funeral.
Mark Bragg 1:19:39
That makes perfect sense. The way, some people kind of see the world, little bit creepy sometimes.
Bill Gasiamis 1:19:53
I think it’s a bit strange. Anyhow, how have you sort of reshaped your purpose in life. What’s life about now?
Mark Bragg 1:20:10
I don’t think it’s really changed.
Bill Gasiamis 1:20:12
Okay, good.
Mark Bragg 1:20:16
My work has changed, and family life has changed only in kind of a practical sense, because because of mobility and stuff like that, and a few of the things I used to really enjoy will not quite it’s much harder to get to them, but that’s which is a bummer.
Mark Bragg 1:20:45
But, you know, I never had problems making friends, and I’ve had a lovely love, lovely caregivers come and go, which has been great, like they’ve all been best kind so, so it’s fun. Yeah, I don’t have hasn’t changed greatly. I don’t get to hang out in coffee shops as much as I used to. That’s kind of my coffee shops and bars. I haven’t been able to do that as much. So I guess that’s mostly how life’s changed.
Bill Gasiamis 1:21:22
Yeah, I love coffee shops and bars. Yeah, works for me. I hear you. Man, Mark, I really appreciate you reaching out. It is so nice to get to meet you and get to learn a little bit about your story. Thank you for joining me on the podcast Man.
Mark Bragg 1:21:37
Same, appreciate it.
Bill Gasiamis 1:21:40
Well, that was Mark Bragg, a stroke survivor, musician and proof that recovery is still possible, even when the odds are stuck against you, four months unconscious, multiple failed shunts, and yet, here he is walking, talking and creating again. If you found this conversation helpful, remember to subscribe on YouTube Spotify or Apple podcasts, leave a review, share it with somebody who needs to hear it. And if you’d like to go deeper, grab a copy of my book.
Bill Gasiamis 1:22:09
The Unexpected Way That A Stroke Became The Best Thing That Happened. You can get it at recoveryafterstroke.com/book, and before we go, let me remind you about the Hanson rehab glove by Syrebo. It’s one of the most practical tools I’ve come across for stroke survivors, helping you practice movement at home, support Neuroplasticity and regain independence.
Bill Gasiamis 1:22:31
It’s available in Australia from Banksiatech.com.au, and can be shipped internationally. I love being able to bring you solutions like this, because your recovery is about more than surviving, it’s about finding the right tools and supporting you to keep moving forward until next time. I’m Bill Gasiamis, and I look forward to seeing you on the next episode.
Intro 1:22:53
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Symptoms of Ischemic Stroke: What You Need to KnowWhen a stroke strikes, every second counts. An ischemic stroke, the most common type, happens when a blood clot blocks blood flow to part of the brain. The faster you recognize the symptoms, the better the chances of limiting long-term damage and saving a life.
But stroke isn’t just a medical event. It’s also an emotional shockwave — for the survivor and for their family. Understanding the early symptoms of ischemic stroke doesn’t just prepare you to act quickly; it also helps you make sense of what comes after.
What Is an Ischemic Stroke?An ischemic stroke occurs when a blood clot or plaque build-up blocks an artery leading to the brain. This blockage cuts off oxygen and nutrients, causing brain cells to die within minutes.
Ischemic strokes account for around 87% of all strokes worldwide. They can happen suddenly, often without warning, and the results can be life-altering.
Common Symptoms of Ischemic StrokeThe key symptoms to watch for can be remembered with the acronym FAST:
- Face – One side of the face droops when smiling.
- Arms – Sudden weakness or numbness in one arm (or leg, especially on one side).
- Speech – Slurred speech, difficulty finding words, or trouble understanding.
- Time – Call emergency services immediately. Every minute matters.Other possible symptoms include:
- Sudden vision loss or blurred vision in one or both eyes
- Severe headache with no known cause
- Dizziness, loss of balance, or difficulty walking
- Confusion or difficulty understanding simple instructions
If you notice these symptoms in yourself or someone else, don’t wait. Call an ambulance right away.
Why Quick Action Is CriticalDuring an ischemic stroke, around 1.9 million brain cells die every minute the brain is deprived of oxygen. Early treatment, such as clot-busting medication (tPA) or a clot retrieval procedure, can dramatically improve recovery outcomes — but only if given within a narrow time window.
Acting fast can mean the difference between walking again… or not. Between speaking again… or not. Between life and death.
“Every stroke survivor I’ve spoken with remembers the moment when everything changed. Recognizing the symptoms early could change the outcome entirely.” – Bill Gasiamis
Life Beyond the SymptomsKnowing the symptoms of ischemic stroke is only the beginning. For many survivors, the real journey starts afterward — in rehabilitation, mindset shifts, and rediscovering identity.
Some may face:
- Physical challenges like weakness, numbness, or spasticity
- Communication difficulties (aphasia)
- Emotional changes such as anxiety, depression, or pseudobulbar affect
- Fatigue that lingers for months or years
While these are not “symptoms” in the medical sense, they are the lived reality of stroke recovery. Recognizing them helps survivors feel less alone — and helps caregivers understand what support looks like.
How to Support RecoveryIf you’re a caregiver or family member, here are a few ways to help beyond the emergency:
- Celebrate the small wins. Survivors often don’t notice their progress — pointing it out helps motivation.
- Encourage consistency. Recovery takes time, repetition, and patience.
- Learn together. Understanding stroke symptoms and after-effects can reduce frustration on both sides.
- Seek community. Support groups and survivor stories remind us that growth is possible after trauma.
Taking the Next StepIf you’ve recently experienced a stroke, or you’re supporting someone who has, know this: you are not alone.
- Discover stories of growth in my book, The Unexpected Way That a Stroke Became the Best Thing That Happened
- Support the show on Patreon: patreon.com/recoveryafterstroke
Recovery is not about going back to who you were. It’s about discovering who you can become — even after the hardest challenges.
Final ThoughtsThe symptoms of ischemic stroke are urgent signals. They tell us to act fast, to call for help, and to give the brain its best chance at healing. But beyond those first moments lies a longer journey — one of resilience, family, and finding hope again.
Life After Stroke: From Crisis to Recovery Beyond the Symptoms of Ischemic StrokeA stroke, a transplant, and a family’s resilience — Brian & Brittany share how recovery goes far beyond the symptoms.
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Highlights:
00:00 Introduction and Background
07:24 Bryan’s Medical Conditions and Recovery
14:27 Life Before the Stroke
21:06 Impact of the Stroke and Initial Challenges
28:35 Support Systems and Recovery Efforts
35:38 The Role of Neurotherapy and Emotional Support
43:00 Adjusting to New Normal and Personal Growth
49:44 The Impact of the Transplant and Ongoing Challenges
56:06 Reflections on the Journey and Future Goals
1:03:37 Recovery and Motivation After Stroke
1:11:08 Perspective on Life Post-Stroke
1:18:31 Closing Remarks and Acknowledgements
Transcript:
Bryan & Brittany: Introduction and Background
Bill Gasiamis 0:00
Before we dive in a half dollar. Thank you to everyone who supports this podcast, including those on Patreon. Your contribution helps make these stories free and accessible to stroke survivors and caregivers around the world, and a big thank you as well to Banksiatech distributors of the Hanson rehab glove by Syrebo. It’s a smart rehab tool that helps stroke survivors practice hand movement at home, whether you’re at the very start of your recovery or many years into it, this glove is designed to help retrain both brain and hand.
Bill Gasiamis 0:37
You’ll hear more about it later in this episode. Now imagine facing an ischemic stroke while already living with type one diabetes and end stage kidney failure. For Bryan Caldwell, that was the reality, and for his wife, Brittany, it meant carrying her family through one of the toughest chapters of their lives. This is a conversation about survival, resilience and the unexpected ways that life can be rebuilt. Brittany Logan and Bryan Caldwell, welcome back to the podcast.
Bryan Caldwell 1:09
Hello. How are you again?
Bill Gasiamis 1:12
Man, I’m fantastic. It’s so great to have you guys here. Last time we chatted, it was episode 189 we are fast approaching episode 370 it was time ago, but it feels like yesterday, because I remember your story, Bryan vividly, and then I remember what Brittany went through.
Bryan Caldwell 1:37
In that, it was a lot for sure. So, yeah, it was a tough time. We’re all still recovering from our different deficits. But, you know, things are a lot better these days.
Bill Gasiamis 1:49
Yeah, different ordeal. How long ago was that?
Bryan Caldwell 1:51
Now, looking at about a little over four years.
Bill Gasiamis 1:57
Okay, so quite some time. So Logan was seven. He was six at the time. Yeah, he was six, Logan, do you remember any of the dramas that happened at your house at that time when Bryan was unwell?
Brittany 2:16
No, not really. We just had to. We had to go to his parents house and live there while he was in the hospital.
Bill Gasiamis 2:25
What’s it like learning about the fact that someone that you love, your family member is unwell?
Brittany 2:37
It kind of scared me at first, and then, like, she, like, kind of explained it in, like, a kid way, so I, like, kind of knew what was happening.
Bill Gasiamis 2:51
Still a little hard to understand, right?
Brittany 2:55
Yeah.
Bill Gasiamis 2:57
What was the hardest part for you? What was the scariest part changing houses, or the fact that Bryan wasn’t with you guys. What was the hardest part?
Brittany 3:06
Probably that and he was in the hospital, and then I couldn’t go in and see him in that one when she could go in.
Bill Gasiamis 3:14
Why couldn’t you go?
Brittany 3:16
I don’t know. They never told me it was covid, and so they wouldn’t allow kids in the hospital. And so he wouldn’t he, he we tried to kind of sneak him in one time, but we were like, No, we’re having to do that. And so he didn’t see him for about three months.
Bill Gasiamis 3:33
Yeah, okay, that’s pretty hard, and it would have been hard for Bryan and everybody anyway. I mean, it’s hard already, and then you can’t see your loved ones, and covid hospitalizations and stroke survivors not did it harder than anybody, even though there’s no such thing as you know my strokes harder than yours or whatever, like, even though everyone’s stroke is, in their own way, difficult and challenging.
Bill Gasiamis 4:01
Dealing with it during covid was even harder, made it even more complicated and emotional and traumatic. But I remember the story because I think when Bryan had the stroke, you discovered that you’ve got a whole bunch of other medical conditions as well. Can you remind me about the medical conditions that you discovered at the time of the stroke?
Bryan Caldwell 4:27
Well, I had already lost vision from diabetes in my right eye, so that was a pre existing condition. Then I had also learned that I was in stage five kidney failure with 3% function left. And so it was a little bit of a fate for the most part. And then after some time had passed, they decided, you know, you’re a pretty great candidate to get a kidney, pancreas transplant. So a year and a half, two years went by, and I finally received the transplant. And that was, you know, obviously, after dialysis for a year and a half, and I finally got the transplant.
Bryan Caldwell 5:06
And since then, you know, it’s been full steam ahead. I’ve been being very as I mean, as much as active as I can be, you know, with my deficits and whatnot, but working out, getting my fitness back up, getting, you know, my endurance back up and, you know, right? You know, stroke takes a lot out of you when you’re trying to move around and be active or whatnot, but this was a whole another motivation for me, just to push harder and push forward.
Bryan Caldwell 5:33
Yeah, you know, it’s supposed to take a lot out of you and you’re supposed to be tired, but I put so much effort into working out and eating healthy and drinking lots of water, and that’s pretty much all I drink these days. But you know, other than that, like my fitness and my fatigue, my fatigue is almost non-existent.
Bill Gasiamis 5:53
So we’ll talk about that. Yeah, let’s see if we can get to the bottom of why that might be the case. But before we do that, so what was like for the life, like for the family, before all of the drama? Brittany, it was a different time, right? So you guys were just going through usual run of the mill, day to day stuff, maybe a couple of little conditions that Bryan had, medical conditions that Bryan was dealing with, the diabetes and all that kind of stuff. But generally speaking, what was life like before all of this?
Brittany 6:29
I mean, life was definitely different. Logan being six, we lived in Utah, and so there was trails everywhere. So we went biking all the time. There was a pond he would go fishing at. Bryan had just finished his off road truck, and so he was going to take that to the dunes and jump it, or whatever you want to call it, but never really had the chance to do that. Logan was playing ice hockey, so Bryan was his coach in ice hockey also, and so it was definitely a bit of a change.
Bill Gasiamis 7:07
Did you looking back now that some time has passed? Did you were there any warning signs that you might have missed just because you were unaware and you’d never been through these types of things before.
Bryan’s Medical Conditions and RecoveryBrittany 7:24
For the most part, he had no symptoms, like they have talked about. The doctors have talked about how kidney failure is like the silent killer, because you really don’t have any symptoms. I remember there was one night, and I don’t know if it was few weeks or few months before his stroke, but he was out in like our loft area, and he had a really bad calf cramp. And I was like, maybe she go to the doctors? And he’s like, no, what are the doctors gonna do for a cramp? But one of the signs of kidney failure is you get cramps in your legs. I think that would probably be the only sign.
Bill Gasiamis 8:00
But who’s going to know that? I mean, everyone gets, yeah, cramps. Every so often. I know I get cramps. I’ve never considered once that it might be my kidney not working.
Bryan Caldwell 8:10
Yeah, so that’s definitely a focus of staying hydrated these days.
Bill Gasiamis 8:14
Yeah, you know your type two diabetes. Logan, did you have something to say there were you going to say something? Oh, oh, sorry, mate, I thought you were gonna say something. That’s okay. I’ll keep going, Bryan, did you look after yourself even though you were diagnosed with type two diabetes? Or were you a little bit slack on the taking care of yourself?
Bryan Caldwell 8:37
I was actually type one, and I was definitely a little bit on taking care of myself. I think my early years, I didn’t really care a whole lot, kind of, you know, my my probability of living a long life is a lot lower than most people’s are kind of looking at the way, like, Hey, I better have fun now. So I had a lot of fun, no regrets, but definitely ate what I wanted to eat. Didn’t stay as active as I probably should have had. I had a really good time. But, you know, over the years, I’ve caught up, and the damage had already been done. So, you know, these days it’s a lot put life into perspective.
Bill Gasiamis 9:17
Yeah, type one diabetes, how do you have to look after yourself differently from somebody with type two diabetes? Now, I believe that type one is something developed early on in life. It’s usually called in Australia, juvenile diabetes. Is that right?
Bryan Caldwell 9:34
Correct. I was diagnosed when I was six years old, and, you know, had, you know, I was supposed to watch my intake of sugar and my exercise and making sure I’m drinking lots of water and carbohydrates and nutritional facts and and I paid attention to it a little bit at first, and then over the years, kind of faded away and didn’t focus so much on the things I should have been focusing on. So, you know, long-term damage. That happened then.
Bill Gasiamis 10:01
So type two diabetes is the one where there’s too much sugar the body can’t deal with the it’s having struggle with the insulin production. Type one diabetes is what exactly we’ll be back with more of Bryan and Brittany’s story in just a moment. First, I want to say thanks again to Banksiatech for supporting this show. They bring stroke survivors the Hansen rehab glove by Syrebo with six therapy modes, including stretching, grasping, releasing, and even a patented mirror function that helps retrain your brain alongside your hand.
Bill Gasiamis 10:38
It’s safe to use at home and available internationally. You’ll find links in the YouTube description and at recoveryafterstroke.com and while we’re on the subject of recovery, I want to remind you about my book, The Unexpected Way That a Stroke Became the Best Thing That Happened. Inside you’ll find real stories from survivors who found a way forward, not just to recover, but to grow. You can check it out at recoveryafterstroke.com/book. All right, let’s get back to Bryan and Brittany as they share how resilience, persistence and family, love kept them moving forward.
Bryan Caldwell 11:14
Basically almost zero production at all. So you’re, I mean, there’s sometimes in type two, where you might need to give yourself injections of insulin, but more than likely, it can be controlled with medication or exercise. For type one, usually it has to be highly, you know, adjusted with insulin and whatnot. So you’re taking a set dose every single day.
Bill Gasiamis 11:39
And is that the set dose that you were missing out on?
Bryan Caldwell 11:43
No, I was pretty up on top of it. But as far as, like, eating, overeating, eating sweets, yeah, drinking soda pops, you know, stuff like that, going out for dessert, doing things I probably shouldn’t be doing. So, yeah, definitely not, straight and narrow.
Bill Gasiamis 12:02
yeah, and type one diabetes. What does it cause if it’s not looked after? Now, there was blindness in one of the eyes. What other cause?
Bryan Caldwell 12:15
So that caused neuropathy in my eyes. I experienced neuropathy in my feet currently, and it doesn’t, although I received the pancreas kidney transplant, didn’t reverse it, I still feel it, you know, I, I mean, not necessarily feel it, because I feel a lot less in my my feet and toes. So if I, if I happen to cut it, or, you know, it’s a higher chance of infection, or I can’t really, you know, I don’t have a whole lot of temperature gauge, so I need to be careful about burning my feet and just if anything gets infected. I gotta be super careful and make sure it’s taken care of, or it could possibly be amputated.
Bill Gasiamis 12:56
And it’s the pancreas that is not working effectively in type one diabetes. Is that right?
Bryan Caldwell 13:02
Correct. And over time, if the sugar isn’t regulated, that’s why you have to test yourself so often. That’s what can cause the kidney damage.
Bill Gasiamis 13:13
So, my gosh, as a kid, as a six year old, get diagnosed with that stuff. I mean, it’s going to be hard to track. And then I imagine, at some point you just want to be quote, unquote normal. And then you do the dumb stuff that everyone does when they’re coming through the years. And then teenager, I imagine, and then drinking age, you hit that hard, I imagine, yep, that makes complete sense. So it’s really hard to opt out of that, though, to be that age and to opt out of it and not to do that, because everyone you know is doing all of that.
Bryan Caldwell 13:52
Yeah, it’s kind of hard to kick yourself in the butt a little bit and do what you’re supposed to do rather than going with the flow and having a good time, you know, like, I try to look at things in a positive light and not dwell on the past and what I have done, which what I could have done, you know, I look forward to the future all the time, no matter what.
Bill Gasiamis 14:12
Yeah. Can you, Brittany, can you describe the time when everything changed, that moment, like with a stroke, and what happened? Are you still comfortable talking about it?
Bryan & Brittany: Life Before the StrokeBrittany 14:27
Yeah, I mean, I think when he had a stroke, I would just, I was just in Go, go, go mode, and it didn’t feel real, like I would wake up and be like, it was just a dream, and then I would wake up and be at my mother-in-law’s house. I’m like, wait, this wasn’t a dream that I thought. And so it he had really bad pseudo-bulbar when he was in the hospital, and so his pseudo-bulbar in the hospital, at least, was he would cry all the time. Yeah, now it’s, he laughs all the time, which, it’s a good and a bad thing, but, you know, so he would be super upset all day.
Brittany 15:10
And then Logan would be super upset not being able to see him. So I would kind of have to, like, put my emotions aside. So it probably wasn’t for maybe six months to a year after, where that’s when I really started to struggle with, like, reality of the situation, because it was constant on the go, doctor’s appointments, therapy appointments, whatever he needed to do. And then when it kind of slowed down, when he was just doing dialysis every day, then it was like, Okay, well, like, this is actually real life.
Brittany 15:41
And that was more of the time that he was coming Bryan was coming around, and, like, more of his mental capacity, like his cognitive ability, was getting better at that time. So he was like, I’m just trying to be positive all the time, and you’re just crying every day. And I’m like, it’s hard.
Bryan Caldwell 15:57
It was definitely difficult for me to understand.
Bill Gasiamis 16:00
Yeah. And at the same time, you realize you had a stroke, but then you’re being also you were told that he had kidney failure.
Brittany 16:10
The doctors, I remember, when they first, the first doctor of the initial hospital, he almost got mad at me because he said, How long has he been in kidney failure? And I was like, what he said, we can’t even push contrast through to do a scan on his brain. And I said, Okay, well, I was completely unaware of that, and I don’t know that this is the best way to approach the wife of someone who just had a stroke, like, that’s insane to me. So, yeah, we had no idea. But, you know, when he got transferred to the other hospital, they all they immediately intubated him.
Brittany 16:39
They said he couldn’t protect his airways anymore. They took him up to, you know, the neuro ICU, and at that point it was covid. People were getting intubated. They weren’t coming out of intubation. And so I was freaking out that he may not come out of intubation. They didn’t know what was going to happen. And plus, you were him out of stay overnight, they ex bat even an ICU patient.
Brittany 17:02
So visiting hours were nine to nine, so I would have no clue what would happen after hours, and till I would get there, and then I would find out, okay, this, you know, there was nights that I wasn’t there, and he would pull out a speeding tube, and then they would have to replace it the next day when I was there. But I these are things that I wouldn’t know about.
Bill Gasiamis 17:22
Did you go into any moments of denial or this can’t be happening? This isn’t real. If I just pretend it’s not happening, it’s gonna go away.
Brittany 17:33
Yeah, I think so. But I was still there every day, and, you know, still tried to do the best that I could to advocate for him, because I felt like, you know, they had different doctors every day, and shift changes happened, and they didn’t fully read the charts, or didn’t know the full extent of what his health was. And so I would have to tell them, nope, that’s not what’s going on, nope. So I’d always have to be there whenever they were changing shifts just to make sure they didn’t miss anything.
Bill Gasiamis 18:03
So you I recall my wife kind of describing a similar situation. See what happened to my wife? Was it she her mum passed away, literally, I mean two, three weeks before my brain surgery, so we had to bury her. Then I had to go into brain surgery, and then I was in rehab because I couldn’t walk, and I had to learn how to walk again. So my wife didn’t have opportunity to bury her mum, mourn, do any of that stuff. Her dad was in a wheelchair, so he needed immediately 24 kind of on shift work, kind of rotation care from the three sisters.
Bill Gasiamis 18:52
And when I touch base with my wife about that now, because more than you know, 12 years has passed, and we can reflect on it. She said that she had to put everything on hold and then attend to herself kind of later. Did that time come for you? Did you find this yourself in a moment where you go, Oh, and it’s going to be about me for a little bit?
Brittany 19:18
I think it’s been about me for a little while now, when Bryan, like, I don’t want to say fully recovered, but when he recovered to the best of his ability, as of now, like, you know, he takes care of everything. He’ll clean the house, he’ll do the laundry. My gas is always full. I drive to work and I’m like, Oh, that’s interesting.
Brittany 19:38
I was on E yesterday, and all of a sudden I’m full, so now, yes, it’s to the point where I can, you know, worry about myself, if there was any, if there was anything to actually worry about. But I think he does such a good job of making sure I don’t worry, although I’m a worry wor about everything.
Bill Gasiamis 19:59
Yeah, less about worry, more about just attending to your needs, you know, like alone time, you know, time to do your thing, time to go where you need to go. More more about that than anything else. Yeah, and then how much of your time is is spent doing caring type of things for Bryan does. What type of support does he need from you?
Brittany 20:25
I mean, physically Now, none. He can do everything himself. I think the support that he needs, that I’m not always the best at, is probably more of like the emotional support or just, you know, giving him the daily compliments that he looks for. And I just, I struggle with that, but I think, you know, everything else, he worked really hard to gain a lot of his ability back so he didn’t have to rely on me. And I still worked full time regardless of him having a stroke. Like, I worked every day in the hospital. I worked when I came home.
Impact of the Stroke and Initial Challenges for Bryan & BrittanyBrittany 21:06
Luckily, the company that I worked for was out of state, so it was remote, so I did work full time, also while taking care of a child. And so now, like, I can just work and not have to worry about, really anything, versus Okay, I have to work. I have to do this, I have to do that. And when, you know, when he first came home, he was very it’s it’s noon, he would text me, it’s 12 o’clock, I need to eat lunch. It’s five o’clock, I need to eat lunch. It’s six o’clock. I have to set up for dialysis. And that would just drive me nuts, but he didn’t.
Brittany 21:42
He physically couldn’t do some of the things, whether it was hooking up his dialysis or cooking food. And then I think he just got so tired of it’s 1205 and I still wasn’t downstairs. So he’s like, Okay, I’m gonna force myself to do this and learn. And you know, he he made some mistakes along the way. But I think he just, he didn’t want to have to rely on me, is what it was, and I think that helped in his recovery.
Bill Gasiamis 22:09
My gosh, my wife looked after the kids. They were teenagers. My wife went to work. My wife looked after her dad. My wife did all those things that you just described as well. It’s just when I listen back at it, I cannot imagine myself being that busy for an extended period of time. Bryan, do you agree you’re nodding there?
Bryan Caldwell 22:33
Yep, definitely. I mean, these days it’s a little different. I’m the one that’s busy all the time, but back then, she was taking on so much, and I can’t even imagine the overwhelming sin like feeling for her. So I mean, it’s hard to make me overwhelmed as a man, but as a woman, I mean, she’s taking on work, taking on her husband that’s emotional, taking on her son that’s emotional, going to school, you know, taking care of bills and everything, just, I can’t fathom.
Bill Gasiamis 23:05
Yeah, it is. It’s kind of like just instinctive. Is it an instinctive? It’s just like, you don’t think about it and well, unless it’s being annoying a particular moment, but things gotta get done. You just get them done, right?
Brittany 23:22
Yeah? Right? Yeah. I mean, I didn’t really think in that moment now, like, I’m like, Oh, I have to get up and I have to do this, and I have to do that, and I think more about it, and then I don’t want to do it. But back then, it was like, Okay, we have an appointment at eight. We have therapy at night. We have to be here at 10. I have to go pick up, you know, Logan by 2pm at school, and so I was more structured in that sense, where I just got up and did it.
Bill Gasiamis 23:48
Yeah. It’s really fascinating. So Bryan, did you find yourself being afraid to take the next step in your recovery early on, and as a result, you were relying on Brittany because she was there. What was that like to finally go? I’ve had enough of waiting for her. I’m going to do it on my own. What did you discover about yourself at that time?
Bryan Caldwell 24:15
Well, we had gone into some arguments, and you know, while I’m sitting there doing nothing all day long, basically just watching TV. She’s taking care of everything for me. And, you know, I’m very, was on time for everything. Like, I’m very, you know, root, yeah, exactly routine. Like, I need that routine and to the to the second, like, I need to be on point. But she’s like, kind of like floating through life, do her thing whenever she needs to, whatever she wants to. And I’m like, No, I need you now. And you know how stroke makes you very impulsive?
Bryan Caldwell 24:55
And I was being impulsive and being rude, and I was and as an. Sitting there all day long watching TV, thinking to myself, you know, I hate the person I’m becoming. I don’t want to be this person. I want, you know, my motivation in the hospital to get better and get out of the hospital was Logan and Brittany and to be there as a dad and push forward. And here I am not doing exactly what motivated me in the first place. So I look back on that and a lot of thoughts went through my head, and, you know, typically, I don’t think those thoughts would be able to process as easy.
Bryan Caldwell 25:32
I had done neurotherapy early on, and that helped a lot. So that helped me, you know, develop my cognition a lot better and able to use my brain a lot more.
Bill Gasiamis 25:49
So what kind of neurotherapy?
Bryan Caldwell 25:52
So it was a new process where they hook different sensors on your scalp, onto the parts of the brain where they they pre previously do a scan on your brain at which parts of your brain aren’t working as well, or what it should be. So they attach these sensors on that brain part that’s not working. And you sit there, you pick whatever TV show you want to watch that keeps your interest, or if you want to focus on it, and you know, I picked something that’s really maybe true crime or something like that, right? I want to focus. I want to pay attention.
Bryan Caldwell 26:29
If you don’t pay attention, the TV goes dim. So if you pay attention, the TV stays lit. So if you’re not, you know, nodding off and paying attention. You can watch your whole episode, but every little tiny bit that’s where it notices you, nodding off or looking away or whatever it is, it’ll go down no matter what. So I did this for four months, three times a week. I want to say it was like 45 minutes to an hour a day.
Bill Gasiamis 27:02
Wow. So it’s kind of like training you to move beyond the threshold of fatigue that I’m going to nod off Have a rest. It’s kind of motivating you to to to do the reps, you know, like the next rep, and then just to sort of try and get yourself to the next level.
Bryan Caldwell 27:24
Exactly. And what turned us on to it in the first place was that it could in certain situations where they have provided proof has helped different stroke patients with any kind of function or movement. And that was kind of the excitement behind it. It didn’t really help me gain a whole lot of function back, but it just helped my brain a lot more to maybe learn a little bit easier, maybe a little bit better.
Bryan Caldwell 27:49
We heard that it helps with autism and different seizures and whatnot like that, so I just gave it a try. It wasn’t covered by insurance or insight, so it did come out of pocket, but it was definitely beneficial took away. I mean, I was very anxiety filled for the first few months. I mean, driving was like the worst. I was always in my head. I can feel like I’m not going to fall out of a car, but there’s always a feeling that you’re going to fall out of a car. I don’t know why. It just affected that part of your brain. So after the therapy, I mean, anxiety went away 90%
Bill Gasiamis 28:29
Wow, that’s so cool. So what extent are your deficits?
Support Systems and Recovery EffortsBryan Caldwell 28:35
So originally, it was the whole left side, but as a lot of work and a lot of rehab. This is like personal rehab, because I graduated medical rehab and did that, and they said, you know, you’re good to go. There’s not a whole lot more we can do. And I kind of took that and said, You know, I’m going to keep on doing my own thing. I’m going to get stronger. I’m going to be more functional. I want Brittany to feel supported. I want her to be able to go do things with me. I want to be able to go things, go do things with her. We can go out to to dinner, to lunch, whatever.
Bryan Caldwell 29:08
And I’m not such a big, you know, headache to her. It’s like, you know, if you’re taking someone that’s running into everything all over the place, you know, it’s, it gets kind of burnt out on taking your handicap husband everywhere. It’s kind of making a scene. So I wanted to be as normal as possible. I’m still not normal by any means, still impulsive, still have, you know, hardly any dexterity in my hand. I’m able to move my arm quite a bit more. I can walk. I just don’t walk normal. I don’t have any devices that help me walk or do anything i i manage everything on my own for the most part.
Bill Gasiamis 29:49
Brittany and Logan, obviously the big motivation. Will call them your team members, your supporters. Were there some other people that came up. That kind of mentored you, helped you. How did this?
Bryan Caldwell 30:06
I mean, I had some friends. I had a lot of a friend group, like, I would say, group, a lot of friends that were supporting, a few friends that were a lot closer than other friends. But for as as the main support, Brittany and Logan 100%
Bill Gasiamis 30:22
Yeah. And it was kind of like a a campaign that you guys all had at home.
Bryan Caldwell 30:29
Exactly. I mean, I would, you know, she explained to Logan that, like, hey, you know, Dad’s gonna be like this, and he you gotta be extra nice, because he’s, you know, you do these small things, he’s going to get really ticked off and probably yell at you, and he’s he doesn’t mean it the way it comes off, so he understands that aspect. So I mean, in all honesty, it’s kind of helped him mold who he is today, because he knows exactly what to do and what not to he has a really strong conscience, as far as you know, the right things to do.
Bill Gasiamis 31:02
Little kids just are so switched can be, so switched on if they want to be. And when they’re around adversity, they step up. You always see little kids step up and play a role that they’re not what they’re not meant to play. Sometimes even, you know, they just take on responsibility and they become stoic, and they become unbelievably good at sort of working out the emotional stuff that we might not be really good at working out. You know, they’re kind of able to tune in a little better than what we can.
Bryan Caldwell 31:39
I mean, Logan could have his own episode if he wanted to. He’s got such a deep, interesting story about the whole experience that I think people could listen to him for hours about his different experiences. Yeah, wow.
Bill Gasiamis 31:54
What motivated you guys to come on the first time? I can’t remember exactly how we connected and why you guys joined the podcast the first time. Brittany, do you recall?
Brittany 32:06
I don’t remember. I don’t know if maybe Bryan had reached out, I think, and I honestly don’t even remember what year we had spoken with you, if it was at the very beginning of the stroke, or maybe a year later, but I know it was pre transplant, so I think it’s really good to have his story, you know, from when it first happened and then to where he is today, because so much has changed.
Bryan Caldwell 32:34
Yeah, I actually do remember.
Brittany 32:38
I can’t remember.
Bill Gasiamis 32:40
So this word, I didn’t mean to ignore you. Sorry.
Bryan Caldwell 32:45
Hey, I’m still here. But anyway, you know, it’s perfectly fine. This was post rehab, so all the medical prescribed, you know, occupational and physical therapy had I had graduated from and while I was at the gym, on the treadmill or whatever, I’d listen to podcasts and anything that was motivational. And so I had researched, you know, recovery after stroke, and it had popped up, and I had gone through 100 different podcasts and listened to, you know, 100 episodes before I decided, you know, I should reach out to this guy, Bill.
Bryan Caldwell 33:19
And see, you know, if I could share my story, because I think in that time, I wanted to help others. I mean, I had gone through a period of time where I was lot more unfunctional than I am now, where I had gotten all my friends and rallied everyone up to donate money, and I had just joined all these different Facebook groups and would witness everyone’s story, whether they’re struggling with, you know, copays or just gasoline getting to different or maybe Ubers getting to their appointments.
Bryan Caldwell 33:54
And they were, you know, not so successful in doing that. And I said, Hey, like, I’d see a particular person and that’s struggling, and I’d reach out and say, Hey, like, what’s the issue? You know, I can’t pay my $50 in copay or my $20 in gas to get there. Well, hey, no strings attached. Here’s $500 and I had rallied all this money together to where I had a good amount of money. I’m just floating people. I didn’t care to keep any of the money, just was throwing it away, basically, just so I can help people, so that was just as something different that I could contribute was to reach out to you.
Bill Gasiamis 34:30
Yeah, look your contribution. People don’t realize what a difference it does make for stroke survivors. I receive messages every single day by people who are glad they found the podcast now people are finding it in hospital, which is something I just love to hear, because that means that we’re decreasing the time that it takes for them to go from stroke. Oh my God. Who am I? What am. What happened to me, all that kind of stuff, to overcoming that, recovering from it, seeing that other people have done it, you know, getting a tip or two from the person I’m interviewing.
Bill Gasiamis 35:12
And it’s just such an amazing thing. And it’s happening all the time. I receive messages all the time. And of course, as a result of the podcast, other stroke survivors reach out to each other through social media, or they contact me for an email address or whatever. And that’s brilliant. That is so so good, because I can bring people together who have had the same experience but are in completely different parts of the world.
The Role of Neurotherapy and Emotional SupportBill Gasiamis 35:38
And because they are so far away, they never would have been able to connect previously and share their similar experiences of their particular stroke or their particular deficit or their particular problem, even so much so to the point this is the one that freaked me out the most. I interviewed an amazing lady whose name I can’t remember right now who had decided to have her foot amputated because of the pain after her stroke, the neurological pain in her foot was unbearable.
Bill Gasiamis 36:13
She put up with it for so many years, and she decided to have a foot amputated. And I thought that was mental, amazing, mental, whatever she thought it was the best thing that ever happened to her, and she was just so overwhelmed that somebody was willing to help her in that way and do that for her. And then, of course, you wouldn’t. I mean, I never expected it, but somebody reached out to me to connect with her, to ask her about her procedure and who was that did it for her, etc.
Bill Gasiamis 36:43
So even in that extreme situation, to be able to connect two people is just mind blowing. Lee, amazing. It’s just fantastic. So that’s just to sort of paint a picture of how much you reaching out to be on the podcast to say maybe it’ll help somebody actually does. And then this one other story, where I’ve interviewed heaps of people that have had carotid artery dissections or a vertebral artery dissections, and in those conversations, I’ve spoken about the deficits. I’ve spoken about what it felt like, what the headache was like, what the stiffness in the neck was like.
Bill Gasiamis 37:24
And this lady who was not a stroke survivor, types in her problems, her pain or whatever, her neck issue. And one of my episodes came up, and she listened to the episode and realized that she had exactly the same problem that the person I was interviewing had, and she asked her husband to take her to the hospital and got the doctors to scan her neck and discover the dissection before a clot occurred.
Brittany 37:58
Wow, that’s crazy.
Bill Gasiamis 38:01
I’ve got no idea what you’ve typed. I mean, how can you possibly type the right thing to get the episode up, to find that stuff and answer your burning question, and then go to the hospital get it exactly, you know, the right outcome? I mean, that’s exactly what we do this for. This is, this is why. So it does help heaps.
Bryan Caldwell 38:22
Right to touch on your lady that you interviewed with an amputated foot, I had pain in my left hand, in my affected hand, that was a 20 out of 10 in pain for what, three weeks. Yeah. I mean, I said, Please, let’s just chop this off. It hurts so bad, and we were doing a bunch of different things to hopefully manage the pain. And what helped for me the most was the littlest things that I could do, if I was just consistent with those little things, you know, I just get a little bit more, a tiny bit more.
Bryan Caldwell 39:03
And within two weeks of just being consistent every single day, the pain disappeared, and I had no clue. No one gave me any idea that that would happen. Same with, you know, my rehab now just working out every day that I started with being able to, I mean, it’s basically getting up sitting out, getting up sitting down, start doing that. That’s very difficult at first. Now, then I went to squatting one pound.
Bryan Caldwell 39:33
And that was a an achievement for me at the time. You know, just a couple weeks ago, I squatted 160 pounds. Wow, which was a big achievement for me personally, just to look back at where I started, where I am now, it just, you know, I just, that’s why it makes me want to keep going. I just want to do a little bit more.
Bill Gasiamis 39:56
It’s consistency definitely is, and that’s the thing. Be that’s really hard, a hard picture to paint to stroke survivors who are early on in their journey. You know where you were during covid, at the first few weeks out of hospital and at home and driving Brittany mental that time. It’s a real hard time to say to somebody, this is what’s possible. I know because I’ve seen I’ve seen it in 360 stroke survivors who I’ve interviewed. So like, you just have to do the work. You can’t just accept it, to expect it to turn up on your door and be ready for you to get back to normal.
Bill Gasiamis 40:39
You have to work hard, harder than you’ve ever had to work, maybe, but you have to be consistent. You have to have habits that are good, habits that serve you, not habits that are bad habits that don’t serve you. And then things improve, and you can have a What’s that like? More quality of life, a greater quality of life. And I know everyone has a different version of stroke, and some people start off with a really way worse version of it than others. I know that doesn’t mean anything.
Bill Gasiamis 41:09
Everyone can improve their situation by making some positive changes to their lifestyle, nutrition, mindset, physical, how physical they are, etc. You’re a classic case of it, because not only did you have a stroke, you have a new pancreas, you have new kidneys. I mean, you’re a proper miracle person.
Bryan Caldwell 41:35
Yeah, it’s not necessarily even working hard. It’s just coming, showing up every day and just putting in the little bit of work, the consistent work. I mean, you can work hard, and I after over time, I wanted to work harder. I wanted to make those big jumps in a little bit, you know, maybe a big chunk of function, who knows, but it’s a you don’t even realize it’s happening.
Bryan Caldwell 41:59
But the little bit you’re doing, maybe a month or two goes by and you realize I wasn’t able to do that a month ago. Wow, this is working. But, I mean, you look at a year in, in, you know, the past, and you’re like, wow, it’s gotten a lot better than it used to be, no matter what. And you know, there’s lots of regression from time to time, and that’s just natural. But who cares? Keep going.
Bill Gasiamis 42:26
Yeah, Brittany, is this the same guy you met was just a completely different version of him, like, I know there’s things that are familiar, you’ll recognize about him, that you fell in love with and all that kind of stuff. But are there two different versions of him, or is it kind of all molded into one, and is this is an enhanced version? Or even though he has deficits.
Bryan Caldwell 42:52
I’m better looking now.
Bill Gasiamis 42:55
No doubt, man, a good bottle of wine.
Bryan & Brittany Adjusting to New Normal and Personal Growth
Brittany 43:00
After the stroke, I yeah, I had a hard time, because I’m like, where did that person go? You know that I fell in love with and what he did, a lot of off the wall stuff in the hospital, and he would always joke around, and it was always a joke that I said, if you ever lost your sense of humor, I would leave you. And so he always tries to be funny, sometimes too funny and not the right situations. It probably took, I want to say, a year and a half to two years it took him to come back to the person that he was before.
Brittany 43:42
But different at the same time, where I would say more so now, like years later, now he he recognizes, you know, I shouldn’t have done that before my stroke. Like, I’m going to do better now, and I’m going to change this. It’s more of, I think, the Near Death Experiences that he probably had where he looks at it in just a completely different way of life. So he tries to live the most positive way.
Brittany 44:11
We have neighbors, and the one of the very first things that they always say is he’s one. He’s just always out doing stuff and on the go all the time, and he’s just such a positive person for everything that he’s went through.
Bryan Caldwell 44:27
He actually, he actually mentioned that I’m the most energetic person that he’s ever met. He’s like, I can’t do this. I need a nap during the day. I need two naps during the day. And I just, in my mind, I have so much to do. I have so much to take care of. I’m not working, so that means I need to switch roles and take care of the things that I can take care of.
Bill Gasiamis 44:51
Yeah, I love that you’re not working in a traditional way, but you’re doing stuff that needs to be done. It’s no different to. A mum, right? Who’s at home looking after the kids, going, Oh, I don’t work. And everyone going, Oh, she doesn’t work. She mustn’t do anything. But no, there’s a ton of stuff that gets done, but it’s just hard to for people to wrap their head around what work looks like. And that’s an identity issue that people have, if I’m not going to an office or to work, or to getting in a car, having to be somewhere by nine and then home by, you know, 5:36, o’clock.
Bill Gasiamis 45:28
If I’m not doing that, that means I’m not being productive, constructive, or something like that. But it you can, you can be productive and constructive in many other ways. You can volunteer, if you can for half an hour, or even an hour a day, you can or even an hour a week. It doesn’t even have to be a day, but you can participate in different tasks to feel like you’re working and being productive and constructive. That’s what and that kind of helps change your identity to see opportunities of what work could look like.
Bill Gasiamis 46:09
It doesn’t have to be the traditional form where somebody else makes the rules about how you turn up or what you do or how many hours you have to work for. You could change that. There’s an opportunity there, but it takes a while for the adjustment to occur and and for people’s identities to expand beyond you know that question that we always answer when we meet people at a party, you know, what do you do? So and if you don’t do something that’s interesting to them, they move on to the next person.
Bill Gasiamis 46:39
The conversation ends, and then they just go, that’s really interesting. So what’s it like for you, Brittany, to observe the whole miracle of medicine from an outsider? Firstly, diagnose, fix up, work out a stroke, then deal with pancreas, kidney failure and all that kind of stuff the donor as well. Can we talk about the donor in a little while? In a minute, what’s it like for you to observe all of the stuff that he’s been through as his wife?
Brittany 47:19
I definitely have said plenty of times, if I was in that situation, I could not have done it, just because there was so much going on it. And I’ve seen stories where someone has a stroke, and you know, they’re in the hospital for a few days, and then they go off to rehab, but he was in the hospital for two months straight because he had complication after complication after complication. And so it was that it was rehab, then it was the kidney pancreas transplant, and he was no longer a diabetic.
Brittany 47:54
And one of the things that I guess I never really considered or thought about was what he had to deal with as a type one diabetic, with all of his highs and lows of his sugars, and how that also affects him. And you know, he would go really high, and then he would give himself maybe too much insulin, and then he would wake up in the middle of the night, and then he would be low, and then he would drink juice or eat something to bring his sugar up. And then sometimes it was too much, so then he would be high again.
Brittany 48:23
And it was a never ending cycle of constantly worrying about sugar levels and how that affects him, whether or not he’s tired, he’s grumpy, you know, in whatever, in whatever way. And then, you know, after the transplant, that was just something that was a miracle that he got it done so quickly. And getting a kidney, new kidney, and a pancreas that, you know, creates insulin.
Bryan Caldwell 48:50
May have changed both of our lives.
Brittany 48:53
I never thought about being a donor like I was never a donor on my license. And after that experience, we watched a few movies about transplants, and then just the after of like, what kind of life that donor gave someone, and I’m like, You know what? Like, I want to be able to help someone, you know, if I’m no longer here, and just knowing that there was also children on the pancreas and kidney list, that was also like, man, if you know my son was on that list. I would want someone to help him.
Bill Gasiamis 49:24
Yeah. Are you waiting for that transplant, contemplating your days may be numbered?
Bryan Caldwell 49:36
No, I had heard, I mean, people can live on dialysis for years. It was, was it up to 10-15, years?
The Impact of the Transplant and Ongoing ChallengesBrittany 49:44
There was one guy that our nurse was telling us that he was still on dialysis after 20 years, and he didn’t want a transplant. I think it’s just more of how you take care of yourself during that process. And he was super. Strict, like, I was super strict on what I cooked, you know, and they had said, if you eat too much phosphorus, which was too much cheese and nuts, you can turn parts of your skin black, and parts of your skin can start falling off. And I don’t know if that’s just an over consumption, overeating and over, like, a 10 year period.
Brittany 50:18
But we were both like, yeah, no, we’re not doing that. So he cut out cheese, he cut out nuts, he did whatever he could to follow the diet as closely as possible. He was, he had lost, I don’t know, 50 pounds. And I mean, he looked very skinny because he didn’t have too much muscle, but he also, at the same time, looked very healthy.
Bill Gasiamis 50:43
And then you get the phone call, do you? How does that work? How does that go? What is it like? We have a liver and we’re sorry, we have a kidney set and pancreas for you. But how does it work?
Bryan Caldwell 50:55
Yeah, they kind of, they give you a whole hoop to jump through, as far as, like, what you need to do, what you need to be prepared for you gotta, you gotta do a pre op of everything, like a pre visit for this pre visit, for that, make sure you’re cleared, ready to go, because they give you, what, a couple hours. I mean, depending where you’re located, sometimes a lot of people have to, like, either drive really far or fly really far, and you have to be there within a small amount of time before that those organs go bad.
Bryan Caldwell 51:26
So luckily, the hospital I was being treated at was only 30 minutes away, or even 20 minutes away, so they gave us a call. We’re ready. I mean, they say, pack a bag. Pack this pack that we didn’t really have to do all that stuff. We were never burdened with, like, being make sure we’re ready, make sure we’re there on the minute. And, like, we only had minutes to spare. You know, we have 30 minutes, and I think we have like, three whole hours to, like, play with because we’re so close to the hospital, thank goodness.
Brittany 51:59
Yeah, I learned a lot about that process. Like, I called probably every week. Hey, what number is he on the list? Because the kidney pancreas list, compared to just the kidney list, is so much shorter. There might be two to 300 people on just the kidney list, but when you get dual organs, you’re on a much shorter list. And I guess you get, like, preferred, like, if you have multiple organs. And so I called, and I’m like, what number is he on? And he finally was, like, at number two when I had called one week. And so I’m like, Okay, it’s, it’s getting close, like, but they did one year.
Brittany 52:33
I think, the first year that he was on the list, they only did one kidney, pancreas transplant that entire year, and then the next year they had done, you know, six or seven, which was the year that he got called. And they called at eight o’clock at night, and they said, we have, or we have organs ready for you. You need to be here by 11. And I was like, Okay, we’ll be there. We get there. They put him through pre op. He was in the or by 4am and they told me it was going to be a four or five hour surgery. And so I went home, because they were like, go home, go sleep.
Brittany 53:09
So I’m like, okay, by the time I got home, I laid down for probably 20 minutes, and they said that he was out of surgery already. So it was a very quick surgery. But I drove back down there, and then they started freaking me out, because, apparently, because he had type one diabetes for 30 years, he had a lot of this. So they attached his kidney into his left leg artery.
Brittany 53:33
But having type one diabetes for so long, I guess it, it creates a lot of calcification in your arteries. So every time they tried to attach the kidney, it was like the vein was disintegrating. So they were having a hard time doing I’m like, what does that mean? They said, I don’t know. We, we, at first couldn’t find a pulse on his left leg. I’m like, so he gets a new kidney and loses a leg. Like, what is going on?
Bryan Caldwell 53:56
That was a big iffy of if they could, you know, it’s going to heal a little bit overnight to where it’s going to develop some blood. Develop some blood flow, and they can feel a pulse, and they’re like, Well, I can hear, while I was, you know, coming out of anesthesia, that, you know, we got to make sure we talk to his wife and let her know the complications. He could be losing a leg right now, and, you know, we’re barely feeling this pulse, and it needs to get better within 12 hours, or it’s not looking good. And I mean fate, it all worked out. And it just, you know, no complaints.
Bill Gasiamis 54:30
The things that have to line up, the amount of things that have to line up. But it starts with somebody needed to pass away.
Bryan Caldwell 54:37
Yeah. Look, I am very thankful for the cadaver, not the cadaver, the person that passed away, he was a very healthy person, so I got some great organs.
Bill Gasiamis 54:51
Did you get to find out who that person is?
Bryan Caldwell 54:55
I’m not supposed to, but my nurse has a. Big blabber mouth, and she gave me some information, but we still don’t know exactly. We just know the situation. So he was in a car accident. He was 29 years old.
Brittany 55:10
Maybe it was early 30. She says 31 male. That was about it.
Bryan Caldwell 55:17
And typically you get 30 to 40% kidney function with whoever is donating. And as mine was in, I mean, the first few weeks after the post op was like 75 or so. And then after that, a lot of recovery, I had jumped up to like 9090, 500% almost. So I still am floating around 90, 95% still, wow.
Bill Gasiamis 55:50
You mustn’t recognize yourself as well how you feel in your body, even though you have neuropathy and deficits, there’s other parts of you that have never worked so well. What? What is that contrast?
Bryan & Brittany Reflecting on the Journey and Future GoalsBryan Caldwell 56:06
I mean, the only thing that I really noticed was, you know, with high blood sugar, your vision is off. It’s a little blurry sometimes. But after the the transplant, my vision cleared up for the most part. Like I felt like I was pretty close to 2020 vision. Wow. Although I had previously had, you know, it was like 10-20 in one eye. So I’m basically legally blind. But after the transplant, everything looked and, I mean, I just had so much more energy.
Bryan Caldwell 56:36
Not everything started working better, per se. But as far as, like, you know, I could eat different things now, and it took a long time for rehabilitation to, like, get everything to be working the way it’s supposed to be working. And then after that, like, I kind of just focus on doing the right things, and then as I did the right things, I just gained more and more energy.
Bill Gasiamis 57:00
And do you take anti rejection medication?
Bryan Caldwell 57:05
Yes, I there’s a few of them I take. And then as a whole, I probably take 20 different pills a day, maybe 25.
Bill Gasiamis 57:16
Yeah, spread throughout the day.
Bryan Caldwell 57:19
Along with my few stroke medications, and then all of the anti-rejection and sustaining medications.
Bill Gasiamis 57:28
Okay, so it’s still quite a regime of medications and things that you need to do to make sure things stay on point exactly.
Bryan Caldwell 57:39
It’s only day and night. There’s a few things here and there with typical transponders. Love UTI and you know, just little, little hiccups that you’re like. You better get that check out before it gets too serious. But other than that, you know, it’s life. Like said, the quality of life is much better. I’d rather take medicine and have to worry about my my organs all the time. So it’s life is so much more easier with this whole transplant.
Bill Gasiamis 58:10
Is the medication expensive to access?
Bryan Caldwell 58:14
I mean, if there’s no insurance involved, very much, I want to say it’s $10,000 a month, yeah, or more, luckily, we’re, we have great insurance, and I’m now under Medicare, being fully handicapped that, you know, I get that taken care of, and then I’m covered by her, her job also. So dual covered, you know, there’s small things we have to pay for here and there, but overall, it’s, it’s well covered, but in most situations, this isn’t what people experience.
Bill Gasiamis 58:45
Yeah, I remember guys an Instagram post where Bryan was talking about some modifications he was going to do to his car, and I think I encouraged it. Did they get done?
Brittany 58:59
Quite possibly. I mean, he’s tried. He’s told me, Hey, I think I want this. I’m like, No, we’re not doing that. He so when he first started driving in after his stroke, he was a little too worried about doing donuts in a field and ran into a pole. And he swears it wasn’t fast, but the second so that’s when his like brain switched from pseudobulbar crying to laughing all the time. So he pulls it up into the driveway, gets out, and just starts busting up laughing.
Brittany 59:34
And I’m like, What is going on? And what did you do? And I walk around the truck, and he had been in his bar, his fender was totally smashed. That was like a good $2,000 repair.
Brittany 59:45
So I’m like “No, it’s fine.”
Bill Gasiamis 59:51
Okay, so I see what you mean about like, it’s the suitable but maybe is taking away a little bit of. That caution as well. Perhaps it sounds like it’s taking away the the thinking part of the maybe I shouldn’t do this.
Bryan Caldwell 1:00:08
No, I think. It’s still there. It’s still impulsive. If I shouldn’t do it, I’m still going to do it.
Brittany 1:00:15
I think the pseudobulbar now is more of like, if he’s mad at me, or he thinks he’s mad at me. He can’t keep a straight face. And so I’ll be like, What are you laughing at? Or why are you doing that? And he’s like, stop. You know, I can’t help it. Just start laughing. And so then it kind of like eases the mood of like his frustration. And then he’s like, I’m laughing right now, but I’m really not inside. And I’m like, What are you?
Bill Gasiamis 1:00:39
Well, so the external, again, the external what’s what’s visible isn’t matching what’s internal. How?
Bryan Caldwell 1:00:51
So, yeah, but at the same time, it gets me thinking more, what am I a lot of times, what am I really mad at? Or, you know, it just helps me be more forgiving, well before, I was just so positive all the time and laughing and having fun to where now it’s like even more of my life to where I’m laughing having fun all the time, even the most unhealthy situations where I should be upset or mad or empathetic, but it’s always like making jokes, making jokes, making jokes. And I don’t know that maybe that has helped with my recovery. It’s just looking at the higher side of everything.
Bill Gasiamis 1:01:33
Look it’s definitely better than being angry for no for a reason or no reason, because the chemical structure in your body changes when you’re angry, it doesn’t become supportive of good health, cortisol, adrenaline, all that sort of stuff doesn’t help, especially if it’s on all the time. You know, these episodes help me be nicer too. I think because I remember, just last night, we had family over, about 20 of us. My my sons have their birthdays five days apart. One of them turned 25 yesterday, and the other one turned 29 five days ago.
Bill Gasiamis 1:02:16
And they both don’t live at home, but they kind of said, Should we get together for birthday? For our birthdays? I said, Yeah, we should get together and invited just the direct family, my wife’s sisters, my brother, my parents, and the kids from those families, like, it’s and the and girlfriends like, that’s 18 people, and it’s a Thursday night, so things get and it’s a bit hard. Everyone’s been at work all day. Everyone’s probably dead. I am. My wife’s at work, so I’m preparing everything, picking up, running around, doing all that stuff.
Bill Gasiamis 1:02:58
And then they all hang around and no one leaves. They’re still here at midnight, and I kind of want to send them off, but I didn’t say anything, because it’s a birthday party, right? What are you going to do? Just kick people out anyway. So I went to bed cranky, and my wife went to bed wiped out, like completely exhausted, and then I had three hours sleep, and then I woke up to go to the toilet, and I didn’t go back to sleep. So I am completely depleted. So then my wife, my wife wakes up at 5:30 or 5:40 in the morning to go for her morning walk.
Recovery and Motivation After StrokeBill Gasiamis 1:03:37
And then the cat won’t stop meowing. She just starts meowing and won’t shut up, which means that my alarm was supposed to go off at 630 so I do have some like in and out of consciousness for a couple of hours just before my alarm, and then the last 45 minutes, my cat ruins it by by meowing and being an idiot. So then I wake up and come and I’m completely grumpy, and I did not greet my wife appropriately in the morning when I woke up and when I left to go to set up my guys. I’ve got some guys doing some work nearby.
Bill Gasiamis 1:04:15
When I went to set him up for the day, meet, meet the client, etc, I left the house being a bit grumpier, or just, you know, sleep deprived, or all those things that happened. And I’m reflecting on it as you’re telling me your story about how you are, probably I don’t know what you said nicer, or something like that. And I reflect on how I behave based on how people tell me about their behavior and what’s appropriate and what’s not appropriate, and it allows me to be a better person. So this is like my therapy session as well.
Brittany 1:04:55
So speaking of animals, your cat, um. Ironically, after Bryan got his transplant, about six months later, we found out our 11 year old dog was diabetic, so Bryan got rid of his diabetes, and then we have a dog that has diabetes, so we had to manage her food. We have to give her insulin, but she knows her schedule. So if you’re not up at 6am she’s barking at you every single day for the last two years.
Bryan Caldwell 1:05:27
But that was part of what was part of my routine, was mentally to get up, feed the dog, and that’s usually when I would start my workout, get that dogs all taken care of, and go up there, lift, my two pound weights, my three pound weights, whatever, and just the routine. Do, do the work like you don’t want to work hard, just show up.
Bill Gasiamis 1:05:50
You and the dog on a similar routine.
Bryan Caldwell 1:05:56
No doubt. But I mean that in itself is just something that was something that I clicked with, and I’m I’m holding on to that. So every day still, until she passes, that’s my routine, to get up every single day, take care of the dogs, go do my workout, and then these days, it’s take care of the dogs, and then by that time, my son’s waking up for school, so I either have to go take him to school, go get her coffee, whatever I’m gonna do, because she’s not gonna wake up for another couple hours, but I’m taking my jobs to take care of everyone in the morning.
Bill Gasiamis 1:06:35
What a slacker. Couple of extra hours. Oh my gosh. Uh, you know, when I wasn’t working, when I wasn’t able to work after I got home, after brain surgery, it was really important for me to look after the family, make sure that the kids were ready to go to school. They had, you know, their little bits and pieces, whatever they needed. And then when my wife got up, had breakfast and all that kind of stuff, and then left, I tidied, vacuumed again, you know, I couldn’t walk properly as still, and I wasn’t that active, but I could do the chores as slowly as I needed to.
Bill Gasiamis 1:07:15
But I could get them done by the end of the day. And then it was really important for me to have the meal prepared when everyone came home from work now they didn’t appreciate it like I did. Now, don’t get me wrong, they appreciated the meal, saying, of course, but I made it such a massive value for me that they just took it as well. He’s at home, of course, he’s going to have a meal for us, you know, like, that’s what happens when you come home from school and when you come home from work, because you’ve worked all day, your partner makes a meal.
Bill Gasiamis 1:07:47
So I remember having some episodes of perhaps they didn’t like the kids, didn’t like exactly what I was feeding them, or with their friends, they went and got some takeout just before they got home, or whatever, and then they weren’t completely hungry, and then I would be I’ve just been slaving over the oven all day. I’ve been doing all the chores, and now you’re not even eating my food. And I went, I became that guy. I became the whinging parent partner who in my attempt to make it, you know, what I valued, you know, something, make them value.
Bryan Caldwell 1:08:32
The same thing that you value, yeah.
Bill Gasiamis 1:08:34
I made it about me. You stopped being about them. I made it about me, and then I was whinging because I wasn’t being valued. Where, of course, they went back to normal. They just wanted to be normal. They wanted to go to work, they wanted to go to school, they wanted to come home. They didn’t want drama, stroke, drama, and all this stuff. But I couldn’t, but I couldn’t see it. I couldn’t stand I used to get really upset if it wasn’t, you know, to if they didn’t acknowledge, sir Bill, you know and Ha, make a fuss.
Bryan Caldwell 1:09:10
How you said it was kind of like your therapy in this conversation. Well, this is kind of like my therapy also, because I experienced the same exact thing where I expected them to appreciate it same way I valued it. And it wasn’t like that at all. So now it’s more like, hey, like, don’t care about what they think, what they should be thinking, or whatever I’m doing this because these are the cards I was dealt. These are the things I have to do. This is my job now.
Bill Gasiamis 1:09:42
Yeah, it’s it becomes more of a responsibility.
Bryan Caldwell 1:09:47
Which everyone’s able to do their thing, whatever it’s work, school, whatever I have to be the grease that greases the gears.
Bill Gasiamis 1:09:58
Yeah, I love it. It’s, it’s finding your place again and then doing it wholeheartedly and not expecting all the fanfare afterwards, you know, just because you did your bit.
Bryan Caldwell 1:10:15
I never really breathed at the after my stroke, like everyone says I would be but that’s the one thing I struggled with, was seeing perspective of what I see compared I want people to understand what I see, and that’s just not the case. They’re never going to understand I mean, yeah, you can have similar stories of different stroke patients, and they’ll understand a lot better, but no one’s going to understand you exactly how you’re feeling.
Bill Gasiamis 1:10:43
Yeah, Brittany, from a partner’s perspective, there’ll be partners listening to this now probably, you know, with the stroke survivor caregivers partners, they’ll be listening to this. What would your advice be to someone who’s a partner who’s going through this right now?
Bryan & Brittany – Perspective on Life Post-StrokeBrittany 1:11:08
Man, that’s a tough one. I have really had to kind of try and understand from his perspective, because, like, we were just talking about, you know, being valued, and he would be so upset if I didn’t say, you know, thank you for doing the laundry today, or thank you for doing the dishes. And in my head, I’m like, You did an adult chore, like, Congratulations, you won a reward. Like, why are you wanting so much praise for that? But then at the same time, you know, for a long time I had to realize, like, okay, it takes me no effort, little to no effort, to do, do the dishes or cook dinner.
Brittany 1:11:47
But it takes him 10 times more effort than what it would have taken me. And so, I mean, I’ve struggled with that this entire time, where I don’t always see it from his perspective and what he’s trying to say. And, you know, understand from that, at least in my situation, it does get better, it as long as the recovery is still continuing and the person who had the stroke is still wanting to get better, you know, on a day to day basis, because that’s really what’s going to change the overall outcome of the situation.
Bill Gasiamis 1:12:23
It’s about both of you getting better, recovering, growing. Yeah, same time, isn’t it? Yeah, definitely. What about you, Bryan, all of the stuff that you’ve been through, you’ve probably got, I’m going to use a big word here for you. Maybe it’s not true, but we’re gonna apply it to each other. Wisdom. You got some wisdom about life now and about how to tackle these things. What wisdom would you like to impart on people that are going through it right now.
Bryan Caldwell 1:12:55
Not trying to drill into your partner or any kind of person’s head about seeing it from your perspective, that’s just one thing that’s separate. But the thing that really helped me the most was celebrating. I mean, you can’t celebrate physically or with your partner or whatever if something mentally you feel like you’re achieving or you’re you’ve had a win in any way, like you did the dishes for the first time, you vacuumed for the first time, you drove for the first time, whatever it may be, celebrate it mentally. If it pumped you up, like, let that keep you going.
Bill Gasiamis 1:13:36
Yeah, that’s really good advice, because you can celebrate little things. People will celebrate tying their shoelaces again for the first time, or putting a band, a hair, a hair band around, you know, the daughter’s hair, or whatever, or helping one of the kids do something that they haven’t been able to do for a while. They are such important things because it starts to sort of create a glimmer of hope, of well, if I’ve done that, what else can I do now?
Bill Gasiamis 1:14:10
And I think sometimes it’d be great if the caregiver had that awareness to sort of say, do you know that x time ago, you weren’t doing that, or you weren’t able to do that, or when you weren’t capable of that, I think that’s kind of how you can motivate somebody with very little effort, is just say, you know, three months ago, you weren’t doing any of that, now you’re doing all of that. Sometimes the stroke survivor doesn’t see it. I didn’t realize my speech was improving. Of course, my wife did, but she didn’t say, by the way, your speech is much, much better.
Bill Gasiamis 1:14:49
My psychologist did, though she said to be oh my gosh, since the last time I’ve seen you, you’re speaking much better, more clearly. You’re finishing. Of sentences you seem to get it be getting stuck less in your thoughts before the sentence comes out. And that was really helpful. That was really something that made a big difference, just bringing people, bringing into my awareness what I didn’t notice. I think that’s what you’re saying, and then celebrating it.
Brittany 1:15:22
I think, as a caregiver, sometimes when you’re in that situation day to day, you don’t necessarily recognize it, where someone who doesn’t see you as often might recognize it quicker. It’s kind of like Logan, if someone doesn’t see him for a year and they see him, they’re like, Wow, you’ve grown so tall, whereas there’s a lot of stuff happening that he was doing that probably should have been, you know, celebrated. But looking back now, it’s like, yeah, there was a lot of he got on a dirt bike when he probably shouldn’t have.
Brittany 1:15:56
He rode a bicycle fairly quickly. He laced up, you know, Logan’s shoes. There was just a bunch of little things over time that he probably mentally took a note of and celebrated, whereas I watched him do all of it. It just, I don’t know, it just almost sometimes didn’t seem like reality, like he didn’t know how to do it and was relearning all of it.
Bill Gasiamis 1:16:20
Yeah, everyone’s gonna observe it very, very differently, and that’s really the important thing. And I suppose what we’re saying is just bringing attention to how helpful it is when you notice something in yourself as the stroke survivor, and then the caregiver in the stroke survivor by being able to just motivate, I think it’s a I think it does a lot of motivational good to say, X months ago, you weren’t doing that, even though you’re doing it badly. You don’t know what I mean, like writing, even if your writing is terrible. X months ago, you weren’t even doing that.
Bill Gasiamis 1:17:00
So now it’s improved out of sight, you know. So I really appreciate the update on this. I just love good story, a good kind of not end, but a continuation, like a chapter two, or what episode two of, well, it’s exactly what it is, right? Episode Two, yeah. So I just love that you guys are here, that you’re I get to see you again. I get to experience how far you’ve both grown, how much recovery has happened, how much you guys have been able to be the recipients of good fortune.
Bill Gasiamis 1:17:40
Because I think, I think part of it is you, like it’s it’s good fortune, but it’s also you, you seem to be able to find the things that you need to find just at the right time to benefit from.
Bryan Caldwell 1:18:01
It’s energy is attracted to different positive energies. So maybe, I don’t know if it’s fate, maybe it could be science. Who knows? But overall, energy was connected at the right spots of good energy, and all in all, I mean, I’m not going to say great experience, but, like, it’s a great experience.
Bill Gasiamis 1:18:27
That’s weird to hear, though, isn’t it? It’s weird to say even.
Closing Remarks and AcknowledgementsBrittany 1:18:31
Yeah, definitely. I Yeah. I think when you when we talk about the stroke and how it happened, and he always talks about fate. He had the same kidney doctor in the hospital that he did outpatient during dialysis, and I didn’t, I guess, recognize how bad it was. And she saw him for one of the first times that he was out of the hospital, and she goes, Wow, you look so good. And she had basically said we were waiting for you to just die in the hospital because your kidney function was so bad, and so she goes to see you walking today is a miracle.
Brittany 1:19:05
And so fate, like again, they had said, if he didn’t have the stroke, he would have died in his sleep, fairly it would have been quick, like within the next few weeks or the few months, he would have died.
Bill Gasiamis 1:19:17
These are the dumb reasons why people say stroke is the best thing that happened to them. I mean, it’s just, do you know, like, that’s I say that stroke is the best thing that happened to me. When I first said, I thought, What a dumb thing to say. And when I’ve shared that with some people, some people have taken that really badly. And it’s not that I am encouraging people to have a stroke, and the only way to discover your kidney failure is through stroke.
Bill Gasiamis 1:19:45
And you know, like, clearly, look after yourself, go to the doctor, get your regular checkups, do all of that all the time. But I don’t know, like, I wouldn’t, oh, my God. I. Wouldn’t change it. I don’t know if I would. It’s weird. It’s weird to say.
Bryan Caldwell 1:20:05
A perspective on life is totally different. It was before my stroke, and I’m sure a lot of different survivor strokes, that I couldn’t look at life the same way as I did 1020, years ago, like I just went day to day, did my routine of work nine to five, basically, and not trying to be or do more, just kind of being complacent. And now I’m not complacent. I want to do the most. I want to make most of not my life, but my situation.
Bryan Caldwell 1:20:40
And I’m not just, you know, my goal isn’t just to motivate people. It’s to make a better situation for my family, for myself, like I don’t really focus on anyone else when I have extra time, I love to focus on other people and give them my attention. Do what makes me feel good? As you know that makes you feel fulfilled to do that type of stuff, but overall, it’s for me and my family. That’s all I really focus on.
Bill Gasiamis 1:21:08
I love it. And you know what it is, Bryan, it’s a great example. So when Logan goes through his own life and has adversity, and he can sort of go, Well, how am I supposed to tackle this? He’s got one, well, two amazing examples of how to tackle a terrible time in your life. You know it’s he’s lived it both with you and both with and with Brittany. And you can go, oh, yeah, I know. I know one way that they did it and it led to good outcomes, so maybe I could start there. And I think that is such an amazing gift to give to somebody.
Brittany 1:21:51
Yeah. And I think he even recognizes, like a lot of you know, what we all went through to just probably last year, the year before, I remember him coming home from school, and he goes, this girl, she she went in the corner because she was having anxiety because she didn’t get to see her mom all day or something like that. And he goes, Do they not realize I didn’t see my dad for three months? And I was like, that’s not an everyday thing that people go through, but you went through it and you got through it. Look at it from that kind of perspective.
Bill Gasiamis 1:22:27
It’s completely different perspective for a kid that age, isn’t it? For an 11 year old.
Bryan Caldwell 1:22:32
Yeah, it’s amazing right now. I think the only focus for him that he’s back to normal life, he’s he’s a much more critical thinker than he was back then. I mean, he’s only 11, so right now it’s, you know, I can’t afford this Pokemon card, so I gotta figure out a way to make enough money to buy this Pokemon card. So those he likes to find different ways to motivate himself, which I can only imagine he can receive from our experience.
Bill Gasiamis 1:23:00
Yeah, problem solving. I love it. Hey guys, thank you so much for joining me on the podcast. I really appreciate it getting to chat to you again and hearing the follow up and seeing how amazing you’re doing. And I wish you both, all three amazing health continued from here on.
Bryan Caldwell 1:23:23
Well, nice talking to you, Bill. Good to see you. It was nice to chat with you again.
Bill Gasiamis 1:23:29
Well, that brings us to the end of this episode. I want to thank you for being here, whether you’ve subscribed on YouTube, left a review on Spotify or Apple podcasts, brought a copy of my book or simply chosen not to skip the ads. Every bit of support helps this podcast reach survivors who need it most. And a special thanks to my Patreon supporters. You’re helping me keep this work going one conversation at a time.
Bill Gasiamis 1:23:53
If you’d like to join us there, you can find the link at patreon.com/recoveryafterstroke, remember, recovery isn’t about going back to who you were. It’s about discovering who you can become. Keep enduring, keep becoming and I’ll see you in the next episode.
Intro 1:24:09
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed all content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis.
Intro 1:24:39
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Intro 1:25:04
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Intro 1:25:30
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Stroke Symptoms for Men: What You Need to KnowWhen you hear the word “stroke,” the first thing that comes to mind might be the FAST checklist: Facial droop, Arm weakness, Speech difficulty, and Time to call emergency services.
While these are critical warning signs, they’re not the whole picture, especially for men. Stroke symptoms for men can sometimes be subtle, misleading, or even mistaken for other health issues. Knowing what to look for can mean the difference between life and death, or between a long recovery and a shorter one.
Why Stroke Symptoms Can Look Different in MenThe biological and lifestyle factors that influence stroke risk can also influence how symptoms show up.
Men may:
- Experience sudden weakness or numbness without noticeable facial droop
- Mistake early symptoms for fatigue, stress, or muscle strain
- Ignore warning signs because they don’t feel “serious enough.”
- Present with cardiac-like symptoms such as arm pain or chest discomfort
This makes awareness and action absolutely essential.
Common Stroke Symptoms in MenWhile everyone should know the FAST signs, men should also be aware of these additional symptoms:
- Sudden loss of balance or coordination
- Vision changes in one or both eyes
- Sudden confusion or trouble understanding speech
- Severe, unexplained headache (often described as “the worst ever”)
- Sensation changes such as tingling or numbness in the limbs
- Sudden weakness in an arm or leg, especially on one side of the body
- Feeling unusually hot or sweaty without cause
- Rapid spike in blood pressure
If any of these appear suddenly, treat them as a medical emergency. Even if the symptoms fade quickly, it could be a transient ischemic attack (TIA) — a serious warning sign for a future stroke.
What Is an Ischemic Stroke?An ischemic stroke occurs when a blood clot blocks blood flow to part of the brain. This is the most common type of stroke, making up about 87% of all cases.
Two main types are:
- Thrombotic stroke: A clot forms in a blood vessel supplying the brain.
- Embolic stroke: A clot forms elsewhere in the body and travels to the brain.
In both cases, brain cells begin to die within minutes. Quick treatment can save brain tissue and improve recovery outcomes.
Why Men Sometimes Delay TreatmentMen are statistically more likely to delay seeking help when symptoms are mild, intermittent, or don’t match their idea of what a stroke looks like. Common reasons include:
- Believing it’s “just stress” or fatigue
- Not wanting to “bother” anyone
- Thinking symptoms will go away on their own
- Prioritising work or family commitments over immediate care
Unfortunately, every minute counts during a stroke. The sooner treatment begins, the better the chances of minimizing long-term damage.
What to Do If You Suspect a Stroke* Call emergency services immediately — don’t drive yourself. * Note the time symptoms began — this affects treatment options. * Stay as still and calm as possible until help arrives. * Do not eat or drink; you may need urgent surgery or medication.
Life After Stroke: A Lifelong Recovery JourneyFor many men, stroke recovery is not a “three-month sprint” but a lifelong process. The early days often bring the biggest visible improvements, but smaller gains can still happen months or even years later.
Recovery may include:
- Physiotherapy to regain strength and mobility
- Occupational therapy to improve daily function
- Speech therapy if communication has been affected
- Ongoing management of blood pressure, cholesterol, and lifestyle factors
The key is consistent effort and a positive mindset, even when progress feels slow.
Preventing a First or Second StrokeMen can lower their stroke risk — or prevent a recurrence by:
- Taking prescribed medication consistently
- Monitoring blood pressure regularly
- Eating a balanced diet low in processed foods
- Staying physically active within personal limits
- Avoiding smoking and limiting alcohol
- Keeping follow-up appointments with healthcare providers
Final WordStroke symptoms for men aren’t always obvious. You might feel “off” without knowing why, or experience symptoms that seem unrelated to the brain. That’s why awareness is so important and why taking action immediately is the best decision you can make for your future self.
Frequently Asked Questions1. What are the first stroke symptoms in men? The most common early stroke symptoms for men include sudden weakness or numbness on one side of the body, facial droop, difficulty speaking, loss of balance, vision changes, and severe headache. However, some men experience subtler signs such as arm pain, feeling unusually hot, or sudden confusion. 2. Can stroke symptoms in men be different from women? Yes. While many symptoms overlap, men may be more likely to present with weakness, numbness, or trouble walking, while women sometimes experience additional symptoms like nausea, hiccups, or chest pain. 3. What is the difference between an ischemic stroke and other types of stroke? An ischemic stroke happens when a blood clot blocks blood flow to the brain. This is different from a hemorrhagic stroke, which occurs when a blood vessel in the brain ruptures. Ischemic strokes are the most common type, accounting for around 87% of all strokes. 4. How quickly should you get medical help if you notice symptoms? Immediately. Every minute counts during a stroke. Prompt medical treatment can limit brain damage and improve recovery chances. Even if symptoms fade quickly, it could be a transient ischemic attack (TIA), which is a major warning sign for a future stroke. 5. What is the best treatment for an ischemic stroke? Treatment often includes clot-busting medication (tPA) if given within a certain time window, or mechanical thrombectomy to physically remove the clot. The choice depends on how quickly you get to hospital, the stroke’s location, and your overall health. 6. Can men fully recover after an ischemic stroke? Many men make significant recoveries, but outcomes vary depending on the severity of the stroke, how quickly treatment began, and commitment to rehabilitation. Recovery may be a lifelong process, with gains possible months or years later.
DisclaimerThis blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
Stroke Symptoms for Men: Kevin Nakawatase’s Ischemic Stroke StoryKevin’s ischemic stroke began with symptoms most men overlook — his recovery shows why awareness and action matter.
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Highlights:
00:00 Kevin Nakawatase’s Stroke Symptoms and Initial Reactions
05:18 Kevin’s Initial Stroke Symptoms
13:01 Accepting The Reality of Stroke
16:46 Dealing With Post-Stroke Paralysis
21:10 Having a Recovery Mindset
30:35 The Small Changes After The Stroke
38:14 Stroke Recovery During COVID
45:05 Advocacy and Community Involvement
50:16 Sharing Different Versions of Stroke
Transcript:
Introduction – Stroke Symptoms For Men: Kevin Nakawatase’s Initial Reactions
Bill Gasiamis 0:00
Before we dive in, a big thank you to Banksia Tech for supporting this episode, proud distributors of the Hanson rehab glove by Syrebo. It’s designed to help stroke survivors improve hand function at home, whether you’re early in recovery or years into it, you’ll hear more about it later in this episode.
Bill Gasiamis 0:20
Links are in the YouTube description and at recoveryafterstroke.com What if the signs of stroke didn’t match the fast checklist at all? No facial droop, no slurred speech, no obvious weakness, just a sore shoulder, a strange heat in your body and a gut feeling something wasn’t right.
Bill Gasiamis 0:40
That’s how it started for Kevin nakawatasi On Christmas Eve, within hours, the celebration turning into a medical emergency, and Kevin was facing complete paralysis on his left side. But this is not just a story about symptoms and hospital stays. It’s about the quiet discipline it takes to keep showing up for recovery even years later, it’s about finding purpose through advocacy and community, and learning that the plateau is just another phase to push through.
Bill Gasiamis 1:11
If you’ve ever been told you’ll never get that back, if you felt your progress was slow and wondered if it’s worth the effort, if you want proof that more recovery is possible long after the early months, then this episode is for you. Let’s dive in. Kevin Nakawatase, welcome to the podcast.
Kevin Nakawatase 1:31
Thanks for having me.
Bill Gasiamis 1:32
Thank you for being here. Tell me a little bit about if you can remember, because it was a while ago what life was generally like for you before the stroke.
Kevin Nakawatase 1:44
Oh, my life was fairly active. I played sports year round, ice, hockey, golf for the main things, and baseball, they’re the three. I played year round. Well, hockey year round, because we can play year round because of the weather. Baseball and golf for more seasonal so from April till about October, and then that’s been basically I spent my life, and then I work for an events company.
Kevin Nakawatase 2:11
I’ve been doing that for over 30 years, and married, no kids, and just living life vicariously through. I guess what we’re supposed to do when we get, you know, as we were taught by our parents, that, you know, get married and have a good life and things like that, save your money all those different things, right? So that was the standard fare.
Kevin Nakawatase 2:35
That was things, you know, I was working at the church and stuff. When I was more in the youth age, I wanted to be a Olympic coach was sort of my ambitious goal when I was trying to when I was going to school, I took I graduated through that degree in in Toronto, and the plan was to go to teach at a high school and then, and then end up in the Olympics.
Kevin Nakawatase 3:00
But some things changed during my like course of doing something like that, so I got into the events game, really enjoy it, and I’m still teaching people, because, you know, you manage people. I worked in retail as well for a while, so all these different things came at me where I continue worked with people, and that’s basically what I wanted to do my whole life, is work with people. So I’ve run camps, you know? I’ve coached teams, and even after the stroke, it continues on right now as as we speak.
Bill Gasiamis 3:33
Yeah, in 2014 How old were you?
Kevin Nakawatase 3:36
I was 54 when this all happened, so I am 10 years along now.
Bill Gasiamis 3:42
Did you have a sense of your health back then? How it was? Did you consider yourself healthy, unfit, any of that kind of stuff?
Kevin Nakawatase 3:51
Yeah, I was on blood medication, pills. Did I take it regularly? No, was I should I’ve been in better shape? Yes, but I wasn’t Should I’ve taken care of my health? Yeah, I think I took my health for granted, like most people do, and then, little did I know, until my mother, just before a passing we found out my mom had many TIAs, so she had two of them in her lifetime, and we had no my brother and I, my our family had no idea this was going on.
Kevin Nakawatase 4:22
The only thing we kind of knew was mom kind of we thought she was getting lazy, in terms of, like, she was starting to use a walker more. She wouldn’t walk. She needed help. We she wasn’t that old, like at the time, she’s, like, in her late 70s. And we didn’t really think, you know, she seemed really good, but then with the walker we bought, we almost as a mistake, because we thought, because she had the walker, she wanted us to push.
Kevin Nakawatase 4:48
But little did we realize that she actually was having strokes and that caused her to stop walking. So after you hear all that, you know the hereditary and getting a stroke and all that. You know, part of the gene the gene pool, I guess, led to what’s happened, what happened to me on Christmas Eve is when I had mine.
Bill Gasiamis 5:12
Do you recall that day? Was it normal? Was it any sense that there was anything wrong?
Kevin’s Initial Stroke SymptomsKevin Nakawatase 5:18
No, um, so what happened was, I was wrapping gifts. We’re going to go to our in laws, my Greek in laws, by the way, we’re going to go to their place for Christmas Eve. I had a sore shoulder, so my left shoulder is really sore, and I kind of got up and I was sitting on the floor wrapping. I got up and I kind of lost my balance a little bit, but I just attributed to I’ve been sitting for a couple hours wrapping gifts and that. So, you know, nothing special.
Kevin Nakawatase 5:44
So I got ready to go out, we ended up at my in laws place, but once I got to my in laws place, I didn’t feel good. I felt really off. We were talking about winters. So it was really cold. It was like minus 20 out. But I had my jacket off, like I was standing with a shirt on that was it, because it was so hot. So my in laws saw me, and they said, you should go to the hospital just get looked at.
Kevin Nakawatase 6:08
Thank God, I took their advice. Went down to the hospital, and the thing they were doing was checking me for heart attack because I had a sore arm, sore left arm, which is the proverbial sign, you know, we have FAST for stroke, but you know, with heart attack, it’s usually sore arm. And you know, chest pains, obviously. But I had no chest pains, so we did the ECG, everything.
Kevin Nakawatase 6:33
So I missed the opportunity to get the medication as well. But we did all the ECG, nothing. My doctor was going to send me home that night. He just said, look, we can’t find nothing. You seem fine. I said, I could have told you I have a, you know, my arm. And then all of a sudden, before I was leaving the hospital, my blood pressure went up to 220, over 120 which at the time is then now you’ve got some issues. There’s something going on to have your blood pressure that high.
Kevin Nakawatase 7:04
So he did some more tests, and he found out. He did MRI or a CT scan, and they found the block at the back of my right side. And so he said, You’re having a stroke. So I said, Oh, okay, now what? And that was the beginning of my next life. What now? What is sort of the whole, you know, like everyone that’s had a stroke, what now?
Bill Gasiamis 7:31
Yeah, so then you’re having a stroke, you get admitted, they intervened. How did they intervene? What happens with the clot in the back of the neck?
Kevin Nakawatase 7:42
So I’m assuming they were going to, they didn’t go in and take it out or anything, nothing, because they’ve seen it. I saw the the X ray or CT scan, and saw the lump, and I guess they filled me up with or give me medication intravenously for about probably close to a week, I had it from the day went in and then until I got moved over three days later, yeah, so roughly, for about almost a week, about five days, I was on some kind of intravenous.
Kevin Nakawatase 8:16
So I guess the medication they gave me was to, I guess, eliminate the the clot as it was going, I guess it did or whatever. Because even when I moved to my rehab hospital, doctor didn’t understand why I was still my blood pressure was still so high. But the doctor at my first place, he’s a neurosurgeon, said we’re going to keep you on a higher level that way, as you decline down, your body won’t get into a shock of having a stroke.
Kevin Nakawatase 8:48
So I did have a typical stroke, like most people were. I didn’t have FAST. If you had to talk to me, fast would have been way online, because I didn’t have, you know, droopy face. I wasn’t slurring my words. I had nothing like, you know, that was it, was just all physical inside, nothing outside that people would have recognized.
Bill Gasiamis 9:12
Same here. But you seem nonchalant about it now. We’re chatting about it like it’s something that happened in the past. And it definitely is right. But what was it like to receive that news? How did you respond at that moment?
Kevin Nakawatase 9:30
So the day I found out, it was like midnight, Christmas Eve, they had a transfer in by ambulance. And you know, it’s Christmas morning, there’s nothing going on, no traffic. So they transferred me from a hospital over to another hospital, which is happened to be about five minutes away. So I get in there, and I start talking to the I had a nurse, a male nurse, who was in my I was in ICU, and for 48 hours he’s he was talking. You mean all that I made my peace with God.
Kevin Nakawatase 10:03
I know it sounds weird, I got mad at him, I basically told him I used the four letter word in my head. I didn’t yell in the hospital, but I kind of said to God. I just said, look, I have no idea what the hell’s going on, but if you’re going to give me this, if this is what you want from me, this is, you know, I’m religious, but you know, I don’t, I don’t practice. And I just said, look, if you want me to work hard to get better, and this is your sign, then, you know, let me get better.
Kevin Nakawatase 10:36
But do me one favor, I’ll work hard to recover. I will do whatever it takes, whatever direction you send me. But don’t you dare give me a second stroke, because I’ve heard stroke, you know, from other people. You know, secondary. I had a lot of people have secondary. I don’t know about yourself, but I did heard that people do get it a lot of times like it’s, I don’t know the numbers are big. You know, 70%, 80% people can get a reoccurrence.
Kevin Nakawatase 11:06
And I made my peace. That was the only time I ever got angry. That one moment lying in bed, and it’s like one or two in the morning. I’m lying there waiting, and I’m I know I’ve effed up if you, if you looked at because if I take it like you asked me a question, if you’re taking care of yourself, I probably may not have been in that position. You know, if I’d taken my meds, worked out, got better, health wise, ate better. I probably would be in a better position.
Bill Gasiamis 11:33
But if you’re working on hand recovery after stroke, there’s a tool worth knowing about, the Hanson rehab glove by Syrebo is available through Banksia Tech. It’s safe to use at home even years after stroke, with six therapy modes, including stretch, grasping, release and a patented mirror function, it helps retrain your brain and hand together.
Bill Gasiamis 11:55
Banksia tech ships internationally, and it qualifies as a low cost assistive technology. Visit Banksiatech.com.au or check out the links in the YouTube description and show notes at recoveryaftstroke.com to learn more. Now let’s pause. You’ve just heard Kevin describe the moments his stroke symptoms defied the fast checklist, and how in just a few days, his left side stopped responding entirely. He could have given into the fear, the statistics, that this is as good as it gets, mindset.
Bill Gasiamis 12:29
But he didn’t. He pushed harder. He made rehab his full time job, even after the formal therapy ended. If you’re in that place where your progress feels slow, where it’s tempting to ease off. Let Kevin story remind you, the plateau is not a full stop. Gains can still come years later. Effort compounds over time. Let’s get back to Kevin and how he turned personal recovery into public advocacy. Was that your acceptance moment? Did you accept that right there and then?
Stroke Symptoms for Men: Accepting The Reality of StrokeKevin Nakawatase 13:01
Yeah, I did. I said, what am I going to do? Like, it’s sort of like I play poker, you know, not for a living, but, you know, when you play cards, you play sports, you can’t change the moment that passed once it’s happened. If you’re playing cards, you’re dealt the hand. Play the hand. That’s just the way guards are played in sports. If they score a goal on you, or hit a home run, or whatever sport you’re playing, that moment’s done. You have to accept the fact that your team played lousy that game, and you move on.
Kevin Nakawatase 13:32
And I coached for years, and you can’t dwell on the past. So I couldn’t dwell on it. And you know, I had no excuses. I blame myself for the stroke. I mean, I know a lot of people don’t, because there’s different. You know, I met a lot of people that were healthy and in great shape, and things just went awry. Yeah, for me, was okay. Kevin could have taken care of better care of himself, he should have, and he didn’t, and these are things so and answer your question, Bill, yeah, I made my peace with myself.
Kevin Nakawatase 14:06
That was the fine moon right there. And then the moment I found out what was going to happen, the doctor came in the next morning. I didn’t know I was going to be paralyzed. I thought it was just going to be okay, you know, I’m going to have a stroke, and then I’m just going to get better in three months, and I’ll just get back to normal, but I’ll take care of myself.
Kevin Nakawatase 14:27
And I was wishful thinking, because the doctor came in the next morning said, this is going to get worse before it gets better. And I go, how can it get worse? I’m lying here on Christmas morning in a hospital. He goes, you’re going to become paralyzed. And I had no idea there was paralysis in stroke. I’ve seen stroke people, a lot of them have disabilities with walking their hand. What I didn’t know paralysis was part of the numbers.
Bill Gasiamis 14:53
How did he predict that?
Kevin Nakawatase 14:55
He I guess he knew because of where my blockage was and. The was going to be because it was at the very back, and I think he knew, based on what was the communication line from my right side to my left side was going to be non-existent, which is so true because within the day by Christmas, Boxing Day. We call Boxing Day here the day after Christmas, and I was in a chair, and I couldn’t use my left hand, I couldn’t stand all those things were gone. It’s like, I was, like, devastated, but I knew they told me this is what to expect. So, you know, I’ve always trusted doctors to the point.
Bill Gasiamis 15:38
Yeah, and you’re watching your ability on your left side decline. Devastated, yeah, but then, how do you deal with that, like are you watching it? Are you going, Oh, my God, it’s going. Are you looking at it? Are you feeling it? Are you trying to walk? I would have been. I was kind of when I started noticing after the brain surgery that I couldn’t feel my left side properly, and I couldn’t walk, when I got out the bed for the first time and fell over because my left side wasn’t working.
Bill Gasiamis 16:14
And they pulled me into rehab like I was kind of looking at it, willing It, telling it, making it, doing everything I could to just, I don’t know, coach it back to better, which was not going to be the way that it was going to work out. But I kind of got there. It took a lot longer than I imagined as well. But I woke up from surgery and it wasn’t there, but you were seeing it decline.
Dealing With Post-Stroke ParalysisKevin Nakawatase 16:46
Yeah, I didn’t go into surgery, like a lot of people. I just went to bed. So what had happened was the nurse that was there, I had he, I talked to him a lot because there’s no doctors around, and he I had a night nurse, and he kept talking to me, and I was looking at my hand. I really noticed when the paralyzation was setting in. It was I looking at my aunt.
Kevin Nakawatase 17:07
Well, my hand was underneath the cover of the blanket, and I’m trying to tap, I’m trying to tap my leg like just like that, and it felt like I was tapping my I was felt like my hand was moving, but it wasn’t because it couldn’t move. And like, I’m thinking, like, I’m going, like this now, and it’s like, okay, my hands moving, and I can see my hand move under the blanket. I didn’t want to look. It was kind of like, I hit it.
Kevin Nakawatase 17:32
And I said, Okay, let me see what’s going to happen. And then I had to start helping my hand out because we couldn’t move it. And I looked at my hand, I asked the guy, go, what the hell is going on like? Why is my hand? He goes, that’s the paralysis. Your whole body shutting down. The other thing too is I had a lot of spasticity in my left leg at the beginning, before the paralyzation sank in, and my leg kept going up and down every five minutes.
Kevin Nakawatase 17:59
So I look like a kicker, like from rugby or soccer or something. So my leg kept going like this, and I kept looking at the guy, and I go, what the hell he just goes. Your body’s spasming out right now, and you’re going to have a problem with that for who knows how long, but for the next while. And I just felt like I was playing a soccer game, like I was like those 20 men, you just kick it and you will, and you look at it, or if you play foosball, like the thing’s just doing that that drove me crazy, like it was just like, what the hell? My leg just keeps moving and wouldn’t stop. So, you know the term Happy Feet.
Bill Gasiamis 18:33
Yes. So there was acceptance of what happened. But what about what was happening? Were you able to kind of get your head around that and go, Okay, whatever this is, we’ll work it out. Or was it more challenging?
Kevin Nakawatase 18:48
No, I’ve always been and you asked me a question back, like all of my life, like I’ve always lived, I’m not a panicky kind of guy, and I think, you know, my wife sometimes doesn’t like that, because I seem very calm when things happen around us with friends. I don’t panic. I know things can be done, but panicking, even when I coached, wasn’t my style, because if you panic and the kids see you’re out of control, the kids are going to get out of control.
Kevin Nakawatase 19:13
So you have to stay in the moment, and you have to kind of stay forward. And I try to implement, some of the things I taught kids when I was coaching the same thing I was teaching myself. I said, Look, you’re going to go through hell for a while, and I’m sure you’re going to get the best care possible. And all you gotta do is you gotta deal with it as it comes and you’re talking to a guy like you know, moving forward is I never went to the gym, I didn’t work out, I didn’t do yoga, I didn’t do anything.
Kevin Nakawatase 19:47
So my life was just sports, like playing. That’s where a lot, that’s where all my exercise was. So it was like, it’s a reversal of fortune, because I couldn’t play sports anymore. And then. And I tried, but I couldn’t play like I used to. And then working out, working with trainer and all that after the fact, was something I had to implement, because I was the only one who’s going to get better.
Bill Gasiamis 20:12
Yeah, how long did you spend in that acute phase where just diagnosed your, your left side’s not working, you’re still in hospital in the early days. How long did that last? And then how long after that, did you end up in rehab?
Kevin Nakawatase 20:28
Three days? So I went in boxing day, and then, because of the holiday, it was very skeletal. So they put a request, I guess after the doctor saw me, and a physiotherapist came in on Boxing Day and was working with me, they did. They determined I needed to get out of there fast and get to a rehab center. So I went in on Thursday, I think, and I was in a rehab facility, my new facility, on Monday morning they, they ambulance me out there Monday morning, I was starting physio Monday afternoon, because, I think with the paralysis, it was only going to be temporary.
Stroke Symptoms for Men And Having a Recovery MindsetKevin Nakawatase 21:10
The doctor knew that, and I think he wanted me to keep my joints moving and keep them active so they didn’t get atrophy. And that’s one of the things I preach a lot to people, like right now, even in support groups nowadays, you know, even though your hand seemed like it’s pretty bad, just try to move it. Do small things, you know, I discuss that with people, just that, you know, people think, because it’s kind of dead right now, I look at it like a plant. You can re water plants and get back to normal, same thing.
Kevin Nakawatase 21:44
And that was sort of how I had to anticipate everything is. I was determined to be back on the baseball diamond and play hockey in the summer, within three months, like so in December, I wanted to make it to baseball in April. So three to four months, I wanted to be back to normal.
Bill Gasiamis 22:06
Did you get back?
Kevin Nakawatase 22:07
No, because it was kind of funny. My occupational therapist, Stephanie, I remember her name. She was, we’re going through all the stuff. I worked with her for four weeks, and just before they’re gonna discharge me as an outpatient, I said to her, well, okay, I want to go, I’m I’m ready to go play ball soon. How long is it going to take me to get better?
Kevin Nakawatase 22:31
And she just looked at me, and she did it with a very straight face, but she respected me enough to be honest with me, and said, look, Kevin, I don’t want you to get your hopes up too high, because you don’t know how serious your stroke has been. And I would suggest you just work through the summer. And this summer is not going to be fun and games. You’re just going to be trying to get better.
Kevin Nakawatase 22:52
And she gave me a weight like just before we left. She says, Here, I’ll prove something to you as well. She put a weight down on the table. Had no idea what weight it was. She was pick that up and try to lift it. And I said, Are you kidding me? How big is this weight? Well, I looked at it was really tiny, right? I go, so, okay, this is nothing. So I try to pick it up. I couldn’t even lift it.
Kevin Nakawatase 23:14
And I said to her, how much is this 10 pounds? She goes, No, it’s one. And I go one pound? She was that’s what I wanted you to understand how serious your situation is, and if you don’t get better, you have to work harder to get better. And that helped me too, like it pushed my boundaries of, you know, working out and, you know, getting instructions, which I took forward after the fact.
Kevin Nakawatase 23:42
Because how can I, you know, how am I going to get better sitting around and I know that is one of the things that I know, you and I and all the people we sit with trying to get better has been the hardest thing for everybody, because unless you’re financially rich, unless you’ve got good health care, or you’ve got a good health system within your country, a lot of people just stay home, and then they just and you know, and then you know, covid came along, and all these different things, and that really upset the apple cart in terms of how Recovery went.
Bill Gasiamis 24:19
Man, covid came along six years later, so this is interesting. We’ll delve into that in a minute. So you’ve gone. So this lady who helped you at rehab gave you, kind of one of the biggest lessons, or one of the biggest eye opening experiences, just proving to you that you might be ahead of your mind, might be ahead of the game, like where you’re at right now is recovery, overcoming, regaining your strength, etcetera. It’s not go back to the diamond and start smashing balls.
Kevin Nakawatase 24:59
I tried. So I did go back to the team, it was horrible. It was like, I was like a little kid. I tried skating the next in September of the next after try skating again. And I was like, starting all over because my left leg was so badly damaged, like the hamstrings and everything. So yeah, if it wasn’t for Stephanie and her talking to me and all my therapists, like I had four or five at the hospital, because I went back as an outpatient to the same place.
Kevin Nakawatase 25:37
And one of the great things that I found is when I was there, everybody wanted to work with me, and it’s not because, you know, Kevin’s this nice guy and all that. It had nothing to do with that. It’s just that most of people, when I was in the hospital were in their 70s and 80s, and recovery is going to be very thin and they had no enthusiasm.
Kevin Nakawatase 25:59
A lot of them had cognitive issues, so they couldn’t comprehend so it’s like, if you have a mother in their 70s right now, tell her to go, you know, walk up and down the stairs like it’s something they can’t do that even when they’re normal. So a lot of them are therapists. You know, their frustration is they want to help people, and it’s sort of hard if the people aren’t responding, it’s like you’re talking to yourself.
Kevin Nakawatase 26:24
And whenever I had an empty moment because I wanted five hours a day in Canada, they just implemented three hours a day, cuz it used to be one to two. And then in January of the year I was I was in there. They, they did three. They the man, my minimum was supposed to be three hours. So I begged them. I just said, Give me anybody, and you don’t even have to work me. Give me a task. I’ll do it. So if you The Karate Kid, one was my favorite because they did the wax on, wax off. You ever saw the movie?
Kevin Nakawatase 26:57
So we did a lot of that. And I said, Here, just put me in front of the board. I’ll wax on, wax off by myself. And then all the therapists had to do was sit near me and just keep an eye on me, but didn’t have to work with me. And they loved that, because at the same time, it gave them a chance to see my progression, and they’re also willing to try different new skills to see if, you know, they learn, to see if it can help me, which, you know, I appreciate it immensely that I started getting a lot of this attention to do therapy, and that that really helped in my recovery, and why I got kicked out in 30 days, as opposed to maybe three months.
Bill Gasiamis 27:40
Yes. So interestingly, I had been booked in for two months. And I remember those conversations specifically about, you’re young, and you’re going to get results, whether they knew it or not. I don’t know what it was, but you’re young, you’re going to get results. And they put in the effort, and they were encouraged, and they were encouraged by my attitude, and I was encouraged by their attitude, like it was a loop of amazingness, you know, without their words, it would have been, you know, more for me to work out, more for me to contemplate and understand.
Bill Gasiamis 28:19
But I went in there pretty motivated anyway, you know, I was 40 years old, you know, needed to get out of there. I needed to go home be the kids, work all the usual stuff. But they did use those words. They did allude to the fact that I was 40, and that was a real benefit, you know, in the whole process.
Kevin Nakawatase 28:39
It’s sad, but I’m 54 and I’m the youngest guy in the place, in our wing, in our ward. Because if you look at 54 now, it’s old like in in the terms of, you know how things are, but it’s just the way it is.
Bill Gasiamis 28:56
I was similar one of the youngest people in there as well. And I don’t know it’s good not to see other younger people in there, which means hopefully they’re not being injured by something in the brain. So that whole experience was pretty cool. And I would say, when people asked me, when I got released from rehab, how far along are you? I would say 95% and it’s stayed at 95% since then for 10 years now, when people ask me how far firstly, I tell people I’m fully recovered, I’m fully healed.
Bill Gasiamis 28:56
But I still have all the deficits so but my physical capacity is nowhere near 95% like I can’t run like I used to. I can’t play soccer, I can’t run around with a football or anything like that, but, I can go to the gym, push weights, walk, you know, do that type of stuff, be physical at work, all that type of thing. And when people ask me. How, far along I’m recovered now it’s still 95.
Bill Gasiamis 29:32
What I didn’t realize was what 95 was back then to what 95 is now is a completely different thing, because I was nowhere near 95 I would judge myself by my ability to stand up and look at myself in the mirror, touch my nose, pick up a pen, that kind of stuff. But that was so fleeting. Those wins, those gains, they weren’t massive gains, they were little gains. And if I didn’t focus and concentrate on them for the next 10 years, I’d lose that that would go, it would be so quick.
Stroke Symptoms for Men And The Small Changes After The Stroke
Kevin Nakawatase 30:36
Absolutely, one of the things Stephanie had told me as well too, where her or one of my other therapists, they said, look, in the first six months, you’re going to notice a lot of different changes in your body as you recover. You’ll see the big changes, because in the first six months to a year, the biggest gains in recovery are during that time. And they said to me, do not get sad in the next year, if you’re not recovering, and you don’t think you’re recovering because you are.
Kevin Nakawatase 31:05
And I said, What do you mean? Well, you’re not going to notice as much, because the stuffs are going to be small, like, you know, walking. You don’t watch yourself walk. You can feel yourself walking. You don’t watch yourself, but your wife or your friends are going to make comments to you and say, well, you’re walking better.
Kevin Nakawatase 31:22
Take that as a grain of salt. Take that with, you know, with a lot of enthusiasm, because they’re the ones that don’t see you every day, and they’re the ones that notice these smaller changes in you. But I think that’s when, when I was leaving rehab as an out into outpatient, I took that so wholeheartedly that all my recovery was going to be small down the road, and I’m going to have to accept that. And I my story to everybody is, if a person broke their leg, just broke their leg, they would never recover to 100% they would get back to about 95 and I kind of look at that was the attitude I’m going to have to take.
Kevin Nakawatase 32:02
It’s like, oh, my body’s broken, okay, but I’m going to recover, and I’ll try to recover as much as I can. Like, I don’t know about you right now, but I still stretch a lot. I do a lot of exercises in the house just to keep my just to keep the body from stiffing up, because I didn’t at the beginning, and then I worked with a trainer, like I got right out, and then I start working a trainer. And one of the trainers had pushed me to just continue to work at home, and, you know, just do stretching exercises and do all the small things that keeps your body active, like, keeps the mind telling the body what to do.
Bill Gasiamis 32:43
Yeah. So I would encourage that. It sounds like that therapist was telling you about the plateau, without using the words you’re going to plateau and all that kind of stuff. It sounds like she said, like, when you get there, don’t worry about it, recognize it and then just keep going.
Kevin Nakawatase 33:02
That was her word plateau. That was the word she used.
Bill Gasiamis 33:06
Yeah, brilliant. And that means that at least you’re aware of it and using it as a way to kind of say you’re going to get there. And this is the positive part about it, instead of how a lot of people receive that information from doctors, which is you’re going to reach a plateau and we’re going to kick you out of therapy, because that means you’re not recovering anymore.
Kevin Nakawatase 33:27
Yeah, I’ve heard that a lot, and I’ve heard people. I’ve heard different people. I met some young people because I ran a couple events last year in the States, and I met two people in LA. One was now 32 the other one was 29. They’ve had a stroke at three and seven. The the guy was seven, he was now 29 his parents was told they’re going to let him die in the hospital, and within 24 hours, he had a turnaround in recovery from the stroke not the stroke itself, he has a stroke, but his body got better, and he was able to, you know, not do big therapy like we do, but as a kid, he got to become a kid again.
Kevin Nakawatase 34:11
He still has some after effects. But to hear those stories, I met a guy in Germany last November. I had gone out for a project, and he was told he had a stroke two years ago, and he thought he wasn’t going to speak ever again. And then here he is, two years later, he’s speaking, not well, but he’s speaking, and I just don’t like that kind of stuff. When people are told never, you’re not going to that’s just wrong.
Bill Gasiamis 34:38
I agree. It’s the one of the worst words that people can use, therapists, doctors. It kind of undoes the good work they’ve done. You’ve done all this good work. We’ve spent millions of dollars in medical miracles, machines, training university students. And then you’re going to send the guy home and say you’re never going to do that again. Oh, what’s the point of that?
Kevin Nakawatase 35:03
Yeah, what’s the point doing therapy in the first place? And now just let the guy you know just throw and bury him six feet under, but that’s when you ask the question mentally, that’s where I knew I wasn’t going to let this define me. And you know, maybe you and I are in that small percentage of, you know, we’re not going to let the stroke define us.
Kevin Nakawatase 35:26
It’s not going to, you know, it’s going to make us different in some aspects, but we’re going to be the same people we were, you know, before the stroke. And that’s all I’ve done, is just try to be the guy that people knew me as before, and then, you know, I won’t let the stroke define me. I mean, I never got into the stroke world for first eight years.
Kevin Nakawatase 35:48
You talking to me now is only because in the last two years I decided to do something about it, because I met a girl online, and that’s how we formed our events last year. Is because it just I heard all the stories. There are a lot of horror stories of how healthcare is not here, only in Canada, globally, you know, Australia, Asia. So that really made me sad.
Bill Gasiamis 36:13
We’ll talk about what you’re doing in a moment as well. But I want to go back to the covid days, right? So six years after your stroke, I would imagine recovery is going forward. Everything’s sort of tracking along, and you’re overcoming all your obstacles. You’re getting stronger and physically fitter and healthier as much as you can so how does covid get in the way of your recovery? Because when I got to covid, I was like, you two, two years extra of recovery, by the way.
Bill Gasiamis 36:36
But when I got to covid, it was like, in Melbourne, we had the long lockdowns and all that kind of stuff. And I took it as a time. Oh, well, it was annoying, frustrating, all that kind of stuff. But I’ll occupy myself in another way. And I didn’t feel like I was missing out on the physical part or the other therapies. Do you know what I mean? Like I had moved on from that stage of it? What happened with you?
Kevin Nakawatase 37:16
So prior to I was working with train different trainers. So I hired private trainers. I went to the gym for the first time. I signed up for a gym for the first time in my life, 56 almost 60 years old, I finally signed up for a gym. Kevin’s on a gym guy, he liked I, you know, he’ll do his exercises on the ice and all that. And I signed up for the gym. And during the time of covid, I wasn’t allowed in the gym where, you know, everyone was banned from going in.
Kevin Nakawatase 37:45
That kind of put a damper on the next part of my recovery, because I, as you said, like a plateau, and I was getting into walking better. I was working with a treadmill. I had a trainer that I worked with. Had two or three different trainers that I was working with. My one left, they went to another one of them, and it was kind of sucked, but it was actually that time too that I, you know, my trainers are saying, Look, you can’t go out. You’re going to have to do a lot in-house.
Stroke Recovery During COVIDKevin Nakawatase 38:14
And not that I wasn’t before. I bought a yoga mat, I got weights, I got bands, I got all these things, so I started doing in house, and I quit the gym like I got rid of my membership after the covid was over, because it just felt the money wasn’t needed. The only thing that they had there that might have helped me was the treadmill, because my gait was so off, I wanted to keep working on it.
Kevin Nakawatase 38:39
But now covid Didn’t have the big, big impact, but I’ve met a lot of people that got it during covid, and I’m telling you, man, I have a friend still in the hospital right now, he got it during covid, and his recovery has been so slow because he didn’t get any recovery during covid, and for me, it’s just watching him wilt away as, you know, with no help. And he’s so depressed his mental health is, you know, through the roof because of all this. And covid just didn’t help people in that normal, you know, hopefully would have better recovery.
Kevin Nakawatase 39:16
And I am. I thank God that you know, like you and I, we didn’t have it during I don’t know what would have happened. I honestly try to believe that it wasn’t going to impact me to a level, that I’m still going to be the strong guy and work out and do something. But I don’t know. I can’t, you know, I’m thank God I don’t have to figure that part out. But I just can’t imagine anyone having a having a stroke from night 2019 to now. Like, how devastating the whole process has been.
Bill Gasiamis 39:50
Yeah, even worse than you normally have to deal with, like, you’d have to deal with all the stroke stuff, and then all of the non, non access. Services, and then all of the difficulty with people coming to see you, and all that type of it was just it would have been difficult for a lot of people, way more difficult than it needed to be, yeah, but absolutely, what’s interesting is you’re still doing all the recovery stuff.
Bill Gasiamis 40:15
Six years later, you know, you’re still at the gym, you’re still going for, you know, personal bests, you’re still trying to overcome. You’re still trying to get fitter and stronger. Your your gait is still on your mind. You need to work it out. You need to fix things more. That’s, the interesting part, to see, that even six years later, you’re still going for improvement.
Kevin Nakawatase 40:40
Yeah, I think it’s one of the things that I think if I could, you know, if you really could stand up in front of stroke recovery and caregivers, that’s the message is, you can’t give up, no matter, we’re going to be recovering for life. That’s just the whole thing. It’s this is not like short, you know, when you break your leg, like I said, before it might take three months do the rehab get recovered and you’re back out playing hockey again, or whatever sport you want to play.
Kevin Nakawatase 41:07
For us, it’s always going to be, you know, you’re worried about having a secondary stroke. And then secondly, you know your body, you don’t know what it’s going to do, if it’s going to break down, if, if you keep working out, is it going to be preventive? Nobody knows. There’s no real solution to it. So you gotta hope that all the hard work you put in is going to be worth all the time and effort that you’ve lost to make yourself better as you move forward.
Kevin Nakawatase 41:35
And that’s I think, you know, that’s my only message, is, that’s it. You just want to keep pushing yourself to get better, stay stronger. I think the only the positives I got out of the stroke. I mean, there’s a lot of positives for my body wise, I had two torn meniscus in my knees, and with all the work I’ve been doing on walking and weights and stuff on my legs, my meniscus don’t bother me anymore, but they’re still torn, but I’ll deal with that down the road, you know, because you can get arthritic. But it’s kind of a weird thing that something like that has changed through the fact that I had to work out and do all these exercises.
Kevin Nakawatase 41:35
Yeah, you improved it. That’s awesome. You’re very matter of fact, right now, you’re very logical. But did you have some tough times emotionally and mentally at all?
Bill Gasiamis 42:22
I don’t. Did I have mental health problems? I don’t know, I’m not trying to brag about it.
Bill Gasiamis 42:39
That’s alright, it’s not essential.
Kevin Nakawatase 42:43
I know. I don’t want to sound like that. You know, I’m a tough guy and all that. I think internally, I had my moment. My defining moment was this Christmas Eve. Every Christmas Eve that comes by, every the last thing, Christmas Eve and Christmas have come by, you know, I thank God that I’m not in bed, and things are good. And I thank God for all the work I put in 10 years ago to now has paid off for me being, you know, normal.
Kevin Nakawatase 43:14
And when I say normal, I don’t know about you and your friends and your family, if they treat you like normal, like you never had a stroke before people see you and say, Hey, Bill, you you had a stroke. Like you, come on. No, there’s no way in hell, right? When you get those kind of things, because people have seen people with strokes. And all the commercials that are out there on the television, you know, globally, aren’t pretty. We’re, you know, it’s not a pretty thing.
Kevin Nakawatase 43:38
So I take it is a tribute that people don’t come up to me and say, well, what happened to you? You know, if they ask, Oh, sure, I’ll tell the story. I’m not ashamed of what’s happened. It’s happened, but I tried to put some of it behind me, and hence why I didn’t get really involved in the community earlier until now.
Kevin Nakawatase 43:56
Because now I feel the story needs to be told how to to keep pushing, because I see so many people having, you know, issues, just trying to recover, mental health obviously, we talked about covid. Since covid has become a very big, big thing. I mean, it was there before, but we really hear about it now, because being alone can really cause a lot of depression, sadness and there are people that you know haven’t had the support to recover, like me, and you have probably.
Bill Gasiamis 44:32
Yeah, absolutely, The spectrum is wide, right? So everyone, not everyone, falls in the same part of the spectrum, and it gets different, hard, differently for everybody. So that brings me to the work that you’re doing now, so the community that you’re talking about, and the support groups, etc. So tell me what you’ve set up in Canada. And how people access it, who accesses it, and what you guys do?
Advocacy and Community Involvement
Kevin Nakawatase 45:05
So right now, what had happened last year is that I met a girl in New York. We partnered to do couple of American events for stroke, because she had a lot of connections, so I wanted to build off of that we have since kind of parted. She’s now kind of dealing with her mom, and that’s fine. I’m, you know, she’s still doing it. I support her immensely. I think it, you know, I think it’s great that we’re doing it.
Kevin Nakawatase 45:27
Well, I focus more on Canada. The second part of it is, I want to run the events again, but now I want to get the health care people involved. I want to get insurance government. Because I really don’t think that community, all these people, understand what we’re going through, the cost associated all these things. I think there needs to be a different, a better definition.
Kevin Nakawatase 45:49
When I hear people go three months and they know they’re going to get cut off from their, financing, and needs to be they need to understand, but there’s not a timeline in recovery. Recovery recovery is different. You and I have taken different timelines, but they all think it’s three months. It’s like, okay, that’s not right. So the events are going to be I’m trying to get these started in Canada.
Kevin Nakawatase 46:12
The hard part is all the medical companies that need to get out in the forefront to, you know, the products that they don’t have the money. And this is where I’m trying to find entrepreneurs, some kind of rich person that’s going to support and put the money in. That’s still my angle I’m trying to work on. So I’m trying to do these events to bring everybody together so we can talk about and discuss how we get better.
Kevin Nakawatase 46:37
My whole objective is not just in Canada. I want to do it globally. You know, talk to people in Australia, do it there. Do it in Asia, do it in Europe and and just make it something. I mean, there’s lot of stroke events, yeah, but it’s all on neurology, and it’s all for doctors, the stroke people and caregivers need just as much information to do better. I wrote a book. I’m just trying to get it published. I’m working. I’m trying to get it published.
Kevin Nakawatase 47:07
It’s, it’s called The Stroke Road Map, and that’s more for caregivers and what you need to do, what you need to you know, I don’t know who your support was when it happened to you, but the person who supported you has no idea what’s up. This is not like, and there’s no guidebooks out there. I mean, you get, you go online and read all the stuff, but I put a whole kind of package together from things like, you know, getting insurance, talking to doctors, what’s the plan?
Kevin Nakawatase 47:35
What’s the future going to be like? What are you going to need? What is as friends? What should you do? What shouldn’t you do? You know, because I had a lot of people call me and their friends had strokes, they go, what do we do? And I said, Well, here’s what you should do, and here’s what we want. Because we don’t want, you know, we don’t want empathy and sympathy. That’s it. Well, I didn’t, and I can’t speak for you, yeah, but what I want is support.
Kevin Nakawatase 48:00
And you know, if you need something, sure, you know, we’ll take that support. But try to help us be better or not, try to help us, baby us. I don’t want to be baby right? And that was the whole thing. So that’s part of the whole package I’ve done. And the other thing I just came back from Germany in November, and bear is now doing a look at secondary stroke, and so I’m on the campaign of that with them.
Kevin Nakawatase 48:26
They filmed my wife and myself. They took six of us from Europe and North America, two from North America, and we told our stories, just like I’m doing with you today. And they filmed it. And bears running campaigns now on secondary stroke, it’s noted too, is the campaign. So the whole idea is, how do we prevent it? And so I continue to work with them.
Kevin Nakawatase 48:50
Now we’re doing more segments, and they’re, they soft launched it just in May, and they’re going to fully launch it in October in Spain, and then North America is going to get launched next February at the Heart and Stroke. So that’s been another part of this stuff. And I’m also doing support groups. I’m actually jumping on one after we speak later, and that’s been with the March of Dimes in Canada.
Kevin Nakawatase 49:17
And it’s been quite how do I say it? It’s, it’s been a learning experience, not for me, but learning about others and what they’ve gone through. You and I, you know, you seem like me. We’ve gotten through it, you know, we’ve we’ve done well, and we’ve kind of grown with it. You know, they’re sure we saw our mental health issues, but not like some of the other people I met. It is like, I feel like just jumping through the computer, go sit down with them and say, Look, I know this is rough, but you can get through this.
Kevin Nakawatase 49:57
And you know, being a cheerleader is great. But then. And I get sometimes when people see you, and I don’t know if you get this, but you’ve recovered quite well, as I can see. And there are others you’ve met that haven’t quite recovered. And I’m sometimes wondering if people are thinking, why is he so good, and why am I like.
Sharing Different Versions of StrokeBill Gasiamis 50:15
A lot of stroke survivors reach out to me to be on the podcast like you, you know, nearly 360 episodes, and that means a lot of different versions of recovery or not recovery. And that’s the challenge. It’s like, I can’t represent everybody, so what I try and do is bring a whole bunch of diverse versions of stroke on my conversations, so that I can then at least close the gap between my awareness of what it’s like and the reality, because my awareness my version, is not the reality for everybody.
Bill Gasiamis 50:53
So just try and close the gap, and then make those stories available. If I get to 1000 podcast episodes, I think I will have achieved that. I’ll have, you know, very broad range of different experiences, and then at least I can connect all the different people who need different versions of stroke together. Yeah, because my version might not resonate with somebody, and that person might not resonate with me and whatever. So I have the same concern.
Bill Gasiamis 51:24
The good thing about is my concern and your concern is, even though we’re doing, you know, like our version of it, I think it’s important without it. I think there’s going to be more of a gap, and it’s necessary for us to push on, push forward in the only way we know how our version of it and yeah, just accept other people as being, just accept other people as being in a different part of their journey.
Bill Gasiamis 51:57
And that if one word that we say in our conversation helps just about mindset, or just about what plateau means, or just about what exercise, how much exercise is necessary, like just one word, I’m done, I’m happy. They don’t have to resonate with me in any other way. Just one word. I’ll take that to the bank. You know, I don’t mind at all.
Kevin Nakawatase 52:23
I agree. I totally agree with you saying I think, I don’t think twice about it, and I don’t shy away from, you know, telling people how I’ve done it. That’s why I keep saying to people, I’m not here. I’ve worked hard to get where I am. This is not like some when some fairy dust came on top of you and I, and we got the the longer end of the stick, not at all. I know, you know, I see stroke survivors, and I can tell how people have done and how well they’re doing based on the conversation and how they how they look.
Kevin Nakawatase 52:56
Because I if my favorite lines always just gotta keep pushing yourself, you know, it’s the only way you’re going to get better and you get stronger. And, you know, some people take it on, and then some people can’t. And I get it because cognitively, sometimes it’s not the easiest thing. And and I think like you, like me, we both didn’t get a lot of cognitive.
Kevin Nakawatase 53:19
I had no cognitive and based on my conversation with you right now, and we just met for the first time, I would think if you had any you’ve gotten through it, or you had very little at all, and you were able to recover to a point to make yourself better, because obviously thinking and a lot of the energy from the mind has to tell the body what to do.
Bill Gasiamis 53:42
eah, I had cognitive issues. They were short-term over probably six months. Couldn’t remember who saw me. Still today, people tell me I came and saw you, and I don’t remember that they did at all.
Kevin Nakawatase 53:57
Long term memory is still up and down.
Bill Gasiamis 54:00
Just in that period of time, yeah, in that six month period of time, I couldn’t type an email, I couldn’t read a book, I couldn’t start and finish a sentence. I would forget mid sentence, what I was talking about, what the topic was, all all these things that happened for a short amount of time. I was in a wheelchair for a short amount of time, probably about six weeks all up, I had four weeks, you know?
Bill Gasiamis 54:24
So I’ve had, I have some spasticity. Everything that stroke survivors say has happened to them has happened to me, but in other areas, like in a small, short version of that. So I have a taste, a glimpse of it, but I don’t have the full life experience of it, you know, it’s, yeah, I’m not living with a wheelchair or anything like that.
Kevin Nakawatase 54:44
So were you, were you dominant side or non dominant? Non dominant? Yeah, yeah, me too. So we’re you and I are very lucky, because I keep telling people, is there, if it’s your dominant side, you actually have to learn it double time, yeah, because you’re teaching your bad hand. How to be good, and you have to teach your good hand how to be better, and that’s double it’s really hard.
Bill Gasiamis 55:07
That’s heaps of work, right? So I totally get it, and I think that it doesn’t matter how you step up with what you’re what. And I’m talking to stroke survivors, watching and listening now, it doesn’t matter how you step up. But what I love is stroke survivors who want to help other. Stroke survivors often reach out to me and say, I just want to be on your podcast if I share my story, and that helps somebody.
Bill Gasiamis 55:33
Job done, and that’s it. See, like helping other people can be just as simple as that. Just share one story that goes out to a global audience. Somebody gets a word out of that, or one idea out of that, and it’s job done. This is what I mean about everyone can support each other in their own unique way with the resources they have and with the amount of time they want to allocate it, allocate to it. Somebody allocates one hour in the next 10 years to helping stroke survivors. Man, that is awesome. I mean, honestly, that’s all we need. We don’t need, yeah, more than that.
Kevin Nakawatase 56:13
If the message gets out of one person hears it and it helps them, that’s all it takes. It’s that one person.
Bill Gasiamis 56:21
I love what you’re doing. I love how you got Bayer, the pharmaceutical company, involved. Like, that’s brilliant.
Kevin Nakawatase 56:29
Well, they came chasing me. I didn’t go to them, though I would have loved to, when I was looking for sponsors. Yes, I reached out to them in Canada. But, yeah, it’s been more and more I’ve been, you know, on my website and everything. I’ve got everything up there uploaded, anything they talk about I like in LinkedIn and and Facebook and stuff.
Kevin Nakawatase 56:50
The whole idealism too is, is that there’s so many people. For me, the message is so many companies, so many people that are getting involved in stroke, myself included, and I’m glad that people are and I just hope that people understand you’re not alone. This is a community. It’s not one that people want to sign up for. Let’s put it that way.
Kevin Nakawatase 57:15
This is not like everyone’s going to want to come to this group. But at the same time, the groups out there, and there are so many people that I’ve talked to that, you know, they’ve all got advice, and that’s good. I think the advice is important. What you do with is up to you. And you know, your journey is going to be different than mine, Bill and and then different from the other people.
Kevin Nakawatase 57:35
But are all we all have one common goal, and that’s to get as healthy as possible, to what we are. Don’t expect yourself to be back to, you know, like I said, the broken leg theory, if it’s broken, you’re never going to be 100 that’s just the way it is. But don’t ever give up. You always can strive for 100, and the closer you get, the better. That’s all you want. If you hit the 100, good for you. I’m not trying to downplay not to be I just think you gotta have the acceptance of small things may not just always work perfectly for you.
Kevin Nakawatase 58:08
But I’m only one person. There’s so many others I’ve seen, prime example in the NHL, Chris Letang plays for Pittsburgh Penguins. He’s had two strokes. He’s still playing in NHL now, what he goes through, I have no idea. You know, there are a lot of other people have had strokes, you know, entertainers and people like that, and they’re still living their lives. And, you know, that’s why.
Bill Gasiamis 58:37
Where would people go if they wanted to connect with you might be Canadian listeners here going on. I need to connect.
Kevin Nakawatase 58:44
Go to my website. It’s K as in, Kevin N as in, Nancy S and Sam C as in, Charlie T as in Tom .com so knsct.com, my, all my details in there, all my events that I’ve done are in there, my bear videos in there, I have actually did another podcast with a gentleman from Oregon I met in LA, and he’s got, it’s called stroke warriors, stroke warrior radio, and he’s doing exactly like you, but in the American version, yeah.
Kevin Nakawatase 59:17
So I’ve been on that one as well. And, you know, good on you guys for, you know, putting this together. I’m not tech savvy, so it’s, you know, I get my niece doing all my work for me. My two nieces are doing my website, my prints and everything. All I do is just feed it out. So, you know, I appreciate the family. But this is, you know, this is sort of thing that, you know, it’s my expertise in terms of what I’ve done for work and, you know, reaching out to people. I just want to continue to help the community.
Kevin Nakawatase 59:46
Everyone goes, you know, what’s your goal out of this? I said, you know, probably like you, if you win the Nobel Peace Prize, it ain’t what I want the Nobel Peace Prize, but it does mean that we’ve done something good, and people recognize. You globally for doing something well. And that’s, you know, the whole idea is to make people understand that stroke survivors need tension and need to get fixed. Because I always, you know, I don’t like comparing apples to oranges heart attack, you know, they go and they can fix it. You get a bypass pretty much normal. They can’t, can’t go in our head and start fixing and playing with it. We have to live with this disability and things like that. So I said, you know, we have to work harder to get to get to some normality. So
Bill Gasiamis 1:00:35
I agree. If anyone wants to nominate me for the Nobel Peace Prize or something like that. Please do.
Kevin Nakawatase 1:00:42
I will. Yeah.
Bill Gasiamis 1:00:44
If I get it, if I get it means that we bring to light more of these issues. That’s all the the only reason I want to get it, my ego’s got nothing to do with it, but if you want to give me the Nobel Peace Prize or any other prize that allows me to get in front of 1000s of people and give my acceptance speech or anything like that, and talk about stroke, start nominating me. Just do it everywhere.
Kevin Nakawatase 1:01:09
Yep, I agree. I totally agree. I’ll be the first. I’ll be first in line with the nomination forms come up. I know you laugh when I said that, but when I was saying it and you’re going, but I tell my friends the same thing, and see they go, Noble Peace. What’s the biggest globally? It’s the biggest award worldwide. I mean, we can’t win an Oscar. You know, that’s, that’s total different thing.
Bill Gasiamis 1:01:30
I’m going to have the links in the show notes, so anyone wants to reach out, they can. And I really appreciate your time. Kevin, great to meet you.
Kevin Nakawatase 1:01:42
I appreciate it. I’d love to get together. And if you’re ever thinking of doing an event in Australia, I’d come down like I absolutely would love to help you guys out out in Australia. And vice versa on, once I get stuff here, I’ll invite you down. And for me, it’s just a matter of Bill, just trying to pass the message on, trying to people, make people understand, you know, we’re going through a disability, but it can be worked out. And you know, it’s, it’s your life’s not over because of something like this. Yes, you’re going to have to work harder, smarter, but those are things we have to work on in real life, whether we’re sick or not?
Bill Gasiamis 1:02:21
Yeah, 100% man. Thank you so much for joining me and being on the podcast.
Kevin Nakawatase 1:02:25
Thank you for having me, Bill and wish you guys a happy winter while you’re you’re down there. We’re enjoying the heat right now, but yeah, let’s stay in touch, and we’ll, we’ll keep connecting and trying to make this world a better place for stroke survivors.
Bill Gasiamis 1:02:40
Before we wrap up another thank you to Banksia Tech for supporting this episode and making stroke rehab tools like the hands and rehab glove accessible to more survivors. If hand movement is part of your recovery, this glove might help visit banksiatech.com.au, or use the links in the show notes and in the YouTube description.
Bill Gasiamis 1:03:02
Now, let’s reflect, Kevin didn’t just experience a stroke with no fast signs. He didn’t just survive paralysis and months of uncertainty. He built a recovery lifestyle. He worked past a plateau. He kept training. Years down the track, he stepped into advocacy, partnering on awareness campaigns, hosting survivor events and joining support groups, because for Kevin, recovery isn’t a deadline, it’s a way of living. If this episode resonated with you and you’d like to help me reach 1000 stroke survivor interviews, please consider supporting the podcast on Patreon.
Bill Gasiamis 1:03:38
Your support covers, editing, publishing and sharing real recovery stories like Kevin’s. And if you want more stories of post stroke growth, check out my book, The Unexpected Way The Stroke Became The Best Thing That Happened, written by a survivor for survivors. Links are in the show notes and Youtube description until next time. Keep going, keep showing up and remember, recovery is for life.
Intro 1:04:03
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed.
Intro 1:04:20
All content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis. The content is intended to complement your medical treatment and support healing.
Intro 1:04:37
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Intro 1:05:05
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Internal Carotid Artery Dissection – How Lara Found Purpose After StrokeA family ski day. A split-second movement. And life as she knew it would never be the same.
Lara Kaufman was a 41-year-old mother of three and a former chartered accountant living a full, busy life. On a ski hill just outside Toronto, she swung her arm with a ski pole to regain balance, and accidentally struck her neck with enough force to cause an internal carotid artery dissection.
It wasn’t long before she collapsed at the top of the hill, right eye blurry, dizzy, and disoriented. Paramedics initially didn’t recognize her symptoms as stroke. But by the time Lara reached a hospital that could scan her brain, she had suffered a massive ischemic stroke. She would soon need a craniotomy to relieve swelling. Her recovery had just begun.
“I was completely paralyzed on the left side of my body. My brain didn’t even recognize the left side existed.”
From ICU to InsightFor weeks, Lara couldn’t walk, go to the bathroom on her own, or sit up without falling over. The left side of her body didn’t respond. Her midline had shifted. She couldn’t even tolerate having her photo taken because her face had swollen shut after surgery.
But through months of rehab, she began to reclaim movement. “I felt like recovery was slow. But looking back now, 15 years later, it was actually pretty fast.”
“I’ve learned to do most things with one hand. I’ve got use of my right side, and I walk up to 6 kilometers. I’m independent again.”
Cryoneurolysis: A Game-Changing TreatmentFor years, Lara battled painful post-stroke spasticity. Botox injections offered minimal relief. But in 2023, she traveled to Victoria, BC to undergo cryoneurolysis a novel treatment developed by Dr. Paul Winston.
This technique involves inserting a -88°C needle into spastic muscles to temporarily disrupt the nerve signal, giving stroke survivors a 6 to 9-month window to rehabilitate without stiffness. The results for Lara were immediate.
“After 14 years of no movement in my left arm, I can now do a bicep curl. That was impossible before.”
Redefining Success After StrokeIn the early days, Lara thought she’d be “back to normal” in two years. But normal changed.
She began volunteering with March of Dimes Canada, mentoring stroke survivors in rehab and later co-facilitating support groups. Every February 13th, the anniversary of her stroke, her family buys a cake and chooses one word to reflect her journey that year. “Accomplishment.” “Gratitude.” “Purpose.”
“If I could be successful in my recovery, I believed others could too. That’s why I keep sharing.”
Stroke Recovery That Keeps EvolvingLara’s story isn’t one of overnight transformation — it’s one of dedication, community, and purpose.
Even 15 years post-stroke, she continues daily rehab, refuses to give up on using her left arm, and serves as an example of post-traumatic growth. Her recovery didn’t stop at walking again. It evolved into mentoring, speaking, and giving others hope.
Want to create your own recovery milestone? Get the Book – The Unexpected Way That a Stroke Became the Best Thing That Happened Join the Patreon Community
Listen to the podcast for more real stories of stroke recovery.
Disclaimer: This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
Lara Kaufman’s Internal Carotid Artery DissectionA ski accident led to a stroke, but what followed was resilience, reinvention, and a surprising new purpose in life.
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Highlights:
00:00 Lara Kaufman’s Introduction and Background
03:56 Medical Journey and Initial Treatment
17:34 Rehabilitation and Early Recovery
19:08 Discovery of Purpose and Helping Others
22:27 Advancements in Stroke Recovery and Technology
25:10 Challenges and Setbacks in Recovery
32:04 Lara Kaufman’s Journey and Tradition
1:17:20 Reflecting on Lara’s Achievements
Transcript:
Internal Carotid Artery Dissection – Lara Kaufman’s Introduction and BackgroundBill Gasiamis 0:00
Before we dive in. A big thank you to Banksia Tech for supporting this episode, proud distributors of the Hanson rehab glove by Syrebo. It’s designed to help the stroke survivor improve hand function at home, whether you’re early in recovery or years into it, you’ll hear more about it later in this episode.
Bill Gasiamis 0:20
Links are in the YouTube description and at recoveryafterstroke.com. Now what if a split second movement during a ski trip was all it took to change everything? That’s what happened to Lara Kaufman, a 41 year old mother of three from Canada, one moment she was gliding off a chairlift the next a jolt to her neck caused an internal carotid artery dissection and a massive ischemic stroke.
Bill Gasiamis 0:48
Within hours, Lara was fighting for her life, complete left side paralysis, a craniotomy, months in hospital, years of uncertainty. But she didn’t stop at survival. She kept going long after the statistics said she should have plateaued.
Bill Gasiamis 1:04
If you’ve ever wondered whether recovery is still possible years down the track, if you’ve struggled with spasticity or been told you’ll never by a doctor, if you’re searching for purpose beyond the pain, this episode is for you, let’s dive in. Lara Kaufman, welcome to the podcast. \
Lara Kaufman 1:23
Thank you.
Bill Gasiamis 1:23
Thank you for being here. Tell me a little bit about what life was like before stroke.
Lara Kaufman 1:32
Before stroke, I have three children, I have twin daughters and a son. My twin daughters were 10 and a half. My son was eight and a half. I was a full time working super mom. I’m a chartered accountant, so I was working, and actually at the time I wasn’t in public practice anymore. I was working with my husband in the pet food business and working quite long hours.
Lara Kaufman 2:05
And then on February 13, 2010, we took a trip to Collingwood, Ontario, which is about two hours outside of Toronto, for a ski day. And we after a few runs up and down the hill, we I got off the chair lift, and I was walking toward the descent, and it’s flat, and I don’t know if you ski, but when you walk on a flat surface, you walk with your skis out like this, and you use your poles.
Bill Gasiamis 2:38
You drag yourself along with the poles.
Lara Kaufman 2:42
And the basket of my pole got stuck under my right ski. Instead of going like this, to yank to remove it the basket from the pole, I went like this, really hard, really fast, with the blunt end and punched myself in my carotid artery. That caused a carotid artery dissection, which then caused a blood clot, which then caused a massive stroke at the top of the hill.
Lara Kaufman 3:06
And all I know is my right eye was blurry. I was dizzy, and I felt okay. I don’t think I should ski down this hill. And my husband was on the chairlift behind me, so when he saw me, he said I was foaming at the mouth, and eventually I collapsed onto my knees, and, you know, I said, I think you should ski down the hill. And goes, okay, it’s okay, you know.
Lara Kaufman 3:26
And he kept saying, I kept hearing, stay with me. Stay with me. The kids were screaming. And, you know, from your children’s cries, you know, there’s a hungry cry, they’re they, they’re older, but there’s a hungry cry that there’s a scared cry, you know, and a tired cry. This was a scared cry, and something I’d never heard before. And I didn’t pass out. I was very awake, but not alert, just awake.
Medical Journey and Initial Internal Carotid Artery Dissection TreatmentLara Kaufman 3:50
And then eventually, my husband called for speed patrol, who then came, and they called 911, and the paramedics came, they said they didn’t see stroke right away, for some reason, I don’t know why, but they did take me to the hospital and then, but that that hospital, because it’s a small town, for whatever reason, there was no CAT scan machine there.
Lara Kaufman 4:12
They have one now, but time they didn’t. And then they took me to another hospital, and there they diagnosed with a carotid artery dissection, and I need a neurosurgeon. There wasn’t one there, so they might, fortunately, my aunt’s brother is one. It was one of the top neurosurgers in the country, and so my dad called him. He’s also a friend of my father.
Lara Kaufman 4:38
So my father called him, told him what had transpired, and he say, said they want to take her to Toronto, which is where I live, and large city, and they back in the ambulance. I went because apparently there were two snowflakes in the air, so the helicopters couldn’t. Had to wait a half an hour to fly. And you know, as you know, with stroke, it’s time.
Lara Kaufman 5:01
So they back in the ambulance, another hour back to Toronto. When we got to the hospital, my husband said they were like 40 people waiting in the bay for me, he’s he’s thinking, what great service you know, not realizing you only get that service when there’s something you know terribly wrong. They had at this point, he hadn’t heard the word stroke or brain damage, so he didn’t know what was what.
Lara Kaufman 5:26
And they go into the hospital, and the chaplains pulling my husband aside, and my husband’s like, No, I’m going with my wife. And he still had his ski boots on because he didn’t think. He figured we’d go get checked out and then go back to the ski hill, and then the the doctor came over. My parents met, met my husband and I there, and they took my parents and my husband to the quiet room.
Lara Kaufman 5:53
This is where they give you, you know, the bad news, saying that I had a stroke and there was significant brain damage, and the next 48 hours would be critical. Wow. And this point, I was oblivious to everything going on.
Bill Gasiamis 6:11
Did you did you have a realization at the time that you injured yourself? Did you connect?
Lara Kaufman 6:17
I knew something was wrong. I didn’t know what. I didn’t know stroke. I just knew something was wrong. I felt dizzy. I visited my right eye. Was it? Oh no, I did something very bad. Something’s wrong. I didn’t know what, I didn’t know how serious. I just knew something was wrong, right? And then I shouldn’t ski down the hill, because I don’t think it’s safe. That’s all I could think about.
Bill Gasiamis 6:40
Yeah, so you made, but I got a couple of decisions that were critical to making the outcome even better than what it was that was a really good result from what happened you you hit yourself with the blunt part of the handle.
Lara Kaufman 6:58
Yeah and I went like this, really hard, but it was like this, like jerked, yeah, you know, because I was pulling it up instead of going like this one, like this, really hard, really fast, and it was a puff. I’d hit my chin. Maybe I would have fractured my chin, yeah, and had surgery, and it would have been the end of it, but because I happened to hit my carotid artery, yeah, you know the then the the effects of that, you know, if I’d hadn’t hit so hard, maybe I would have bruised it. There was no mark on my neck, there was nothing. There was no cut, there was no mark, nothing.
Bill Gasiamis 7:33
So, from the injury, from the injury to hospital, how long passed? How much time?
Lara Kaufman 7:38
So injury to the first hospital, I’m probably going to say, about half an hour, and then probably it was probably about three or four after four, four hours time I got to the hospital in in Toronto. But apparently, because the it was a bunch of bund forest trauma, I wouldn’t have qualified for the TPA drug. No, no, because my husband did inquire about that. Yeah, um, if, if they did, if it did, if they could have taken the helicopter, would I? Could I have they? Could they have given me this drug? And they said, No, I wouldn’t. Didn’t qualify.
Bill Gasiamis 8:18
Yeah, time, the amount of the time had elapsed as well. So how long before you came kind of back into the land of the living? Were you aware? Was there a moment where you went from being kind of oblivious to then into awareness?
Lara Kaufman 8:33
Yeah. So some later, sometime later, that day they I when I was told that I had a stroke. Now, my grandfather, who I never met, who I’m named after, in 1964 I think it was or 65 for I was born, had a stroke. He had heart disease, and there was no blood thinners back then, and so I thought, I didn’t know this at the time. I thought my grandfather died of a stroke. In fact, he survived the stroke, but he died a year and a half later of a heart attack.
Lara Kaufman 9:04
So my first, my thinking, because I didn’t know that he, I thought he, I said, I, you know, I don’t want to die. I don’t want to die. I don’t want to die. That’s, you know, I have to be around for my kids like I don’t want to die. That’s all I could think about, is I don’t want to die. And I was scared, okay, it was. And you know, my husband was saying, You’re not going to die, you’re going to be okay, you’re going to be okay, even though he didn’t know that or not. He just he lied.
Bill Gasiamis 9:32
A little white lie. That’s a good lie.
Lara Kaufman 9:35
Yeah. And then I probably, I just remember getting they kept giving me CAT scans, like every office, every four hours, every eight hours, and the bed was very cold, and I was freezing. And so those are the things. It was the little things that I remember, not so much the big picture, because I was not told about the big picture.
Lara Kaufman 10:00
And then, and then they were monitoring me to see if I needed a craniotomy because my brain was swelling. Uh, okay. Had us the surgery four days later, and I remember I had to sign something to to to allow me to to authorize the surgery. My husband had to sign too, because they knew that I wasn’t up to it wasn’t 100% there.
Bill Gasiamis 10:25
Yeah. So you had a craniotomy, yeah? How much of the skull did they remove?
Lara Kaufman 10:32
Like the whole scar, this big. And they took it out for so February, February, 17, 18th, whatever that day was, they took it out and they put it back at the end of April.
Bill Gasiamis 10:47
Now, if you’re working on hand recovery after stroke, there’s a tool worth knowing about, the Hanson glove by Syrebo, available through Banksia Tech. It’s safe to use at home even years after stroke, with six therapy modes, including stretch, grasp and release and a patented mirror function, it helps retrain your brain and hand together.
Bill Gasiamis 11:12
Banksia Tech ships internationally, and it qualifies as low cost assistive technology. Visit Banksiatech.com.au, or check out the links in the YouTube description and show notes are recoveryafterstroke.com to learn more. Now, let’s take a moment. You’ve just heard Lara describe the surreal moment she hit her carotid artery and how within hours, her world collapsed into chaos, paralysis and silence.
Bill Gasiamis 11:39
She lost her ability to walk, to sit, to move, and yet she found a way forward. If you’re in that in between place, not where you were, not where you want to be, just know this, the plateau is not the end. Healing does not follow a schedule. Hope is still on the table. Let’s get back to Lara and what happened when she started helping others, February, March, April, so about three months in total.
Lara Kaufman 12:06
Yeah. They kept it out, and then I had to wear a hockey helmet, not in the hospital, but when I went to the rehab hospital, I had to wear a hockey helmet, because the only thing separating my brain from the outside world was my skin. So if I hit it, if I fell and hit my head, it’s game over.
Bill Gasiamis 12:23
How do you deal with that? So I a few months earlier, you were running around the business the kids being usual, normal, healthy person. You go skiing, have an you get an injury, you wake up in hospital. You’ve had a stroke, now your brain’s swelling, and then one day, you wake up after a craniotomy with half of your skull missing, parked in a box somewhere in a refrigerator.
Lara Kaufman 12:53
I don’t think I really understood what was going on. It’s like you get this information. You’re like, okay, okay, you know, like, you just, you just kind of go with it, and you don’t really understand the ramifications of what’s really going on, you know, I thought this was February. We were supposed to go to Florida in March, and I thought I was going, you know, I didn’t. And my husband says, you know, you’re not going to Florida. Go, yeah, here we are going, don’t worry, it’s okay. We’ll go, you know.
Bill Gasiamis 13:23
Delusions was huge. That’s okay, I understand that as well. Now, did you catch yourself in the mirror? Did you have a look and go, what on earth is going on here? What am I looking at here?
Lara Kaufman 13:37
No, I did not look. After the craniotomy, my eyes were swollen shut, like I could see cracks, and so I knew I there’s no way I look good, and because of that, I didn’t want anybody taking my picture. I regret it now, because I would love to see what I look like, then it would also help, you know, see how far I’ve come, even though I know I’ve come a long way. Yeah, I wish I had pictures from back then, but I I didn’t want anybody taking my picture, so.
Bill Gasiamis 14:04
Yeah, fair enough. And then what about the part of the surgery when they put it back? What is that like? What is that experience?
Lara Kaufman 14:14
I remember that more because I had been in rehab for six weeks, maybe longer. And so I, like, you know, in the there were little things like in the re in the rehab hospital, the nurses transfer you from wheelchair to bed, you know, and back. Whereas in the hospital, you in order to get to wheelchair, they gotta, they gotta lift you in this, I call it the elephant lift, you know, with the parachute.
Lara Kaufman 14:47
And then they bring you down, they put you, and you feel like you’re this, like this elephant in a zoo, being lifted up and putting it because the nurses aren’t trained to transfer you, which was such a simple thing. You. So there were and I was more aware when I was in the hospital the second time than I was the first time, much more aware of my surroundings, the people, the nurses, everything.
Bill Gasiamis 15:12
Sounds like the the healing of the brain had started to happen already. The swelling had gone down. Things started to come back online, and you gave you the opportunity to be more with it.
Lara Kaufman 15:23
Yeah, exactly. And I was, I mean, at least I feel I was.
Bill Gasiamis 15:29
You know that part where you forbid images, photos, that type of thing. Do you think it was part of the not having accepted what happened? Or was it actually just because of the way that you looked?
Lara Kaufman 15:47
I thought all this was temporary. I really thought this was all temporary, and this was a blip in this, you know, in the scheme of things, and that’s just not having a full grasp of what, really happened.
Bill Gasiamis 16:00
Just being ignorant about stroke, which is normal, at your age.
Lara Kaufman 16:04
Ignorant about stroke, ignorant about my situation, you know, the doctor said, you know, to you, you know, it’ll take you two years to recover. You’ll be back. They didn’t say back to normal. But when they said it’ll be about a two year recovery, in my mind, you know, in two years, I’ll be back to normal.
Bill Gasiamis 16:28
I know it’s, it’s an interesting statement, because everyone who’s been through stroke kind of has a moment like that. They have the back to normal moment, and then then they have the, there is no back to normal. And then that’s the moment as well, and that’s pretty dramatic, but, yeah, craniotomy tends to be a bit more dramatic, and therefore more recovery, more healing, more areas that have been impacted, interacted with, touched.
Bill Gasiamis 16:55
You know, there’s so much to comprehend, you know, for the body to comprehend and realign and readjust, not to mention the possibility that you’ve got deficits from the actual stroke. You know, the part of the injury which shut down your brain, some of your brain cells. So where is that? What type of injuries did you end up with after the stroke?
Rehabilitation and Early Recovery From The Internal Carotid Artery DissectionLara Kaufman 17:20
So when I had my stroke, I was completely paralyzed on the entire left side of my body. Couldn’t feel a thing, and my brain didn’t recognize the left side at all. So my midline, which used to be center, was now moved, you know, to the right side, and I couldn’t even sit in a wheelchair because I kept falling over because I had no trunk support at all.
Lara Kaufman 17:43
And I went from that to, you know, the recovery was, I felt was slow, you know, and nobody feels it’s fast, but in hindsight, was actually pretty quick, looking back now that it’s been 15 and a half years, you know, I can now walk five kilometers, maybe six at one time, and I’m fairly independent.
Lara Kaufman 18:15
My left arm is still partially paralyzed, so I don’t have a lot of use of it, but I’ve learned to do most things with my right hand, so I’ve just kind of made do with what I have, and I’ve always had a positive outlook on things. I really just believe that, you know, this was there’s a higher reason for all this. I read a book many, many years ago called why bad things happen to good people.
Lara Kaufman 18:43
And although I don’t remember the details of the book, I remember, you know the title, it’s in the title. You know that there’s, you know, why bad, but the good things come from it, you know? And so I said to my husband, there’s gotta be silver linings here. This is, this is so bad, there’s gotta be silver linings. And I kept looking. I was like this for the first two years, looking for where you know, where are they.
Discovery of Purpose and Helping Others
Lara Kaufman 19:06
And then someone told me, when you’re meant to find them, you will. And then I would say, about six months after that conversation, I was approached by March of Dimes Canada, which is a disability charity organization helping people with disability, empowering people with disabilities in Canada. And I got involved with them, with their they had a stroke program looking they were looking for stroke survivors to peer Council stroke survivors that were in the hospital.
Lara Kaufman 19:39
And my doctor thought I’d be a great person to do it. And I said, Okay, here’s my here’s my reason like here’s and I started doing I went to the rehab hospital every week for two hours from 2013 until 2020 till covid. And then started doing it online, having one. To one calls, and really helped me, you know, talk to people, meet people from all over with all walks of life, and listen to their stories. And it helped me in my journey as well.
Lara Kaufman 20:13
And I would go and I’d, you know, they were so thankful that I used to come home feeling very selfish for I’d get some such good feedback from it that I’m thinking of what I’m such a selfish, selfish person, because I’m getting the rewards, you know, when I know, in fact, it’s the opposite, and I’m helping them and but it’s just the way I really enjoyed it, and I still do it to this day. And you describe, whenever they ask me to do something, I I just don’t say no. So I’m now, now co facilitating a peer support group, a new pilot project.
Bill Gasiamis 20:46
Weird. Isn’t it like you’re describing me exactly. It’s exactly what happened to me, is I went to the Stroke Foundation. They put me in touch with stroke survivors. We started to share. And I feel a little bit more like understanding and, you know, empathy and support.
Bill Gasiamis 21:04
And then from there, I volunteered. So I started coaching, telling people about stroke, raising awareness in the community, what to what the signs are, what to do if you think somebody’s having a stroke, that kind of stuff. Amazing, awesome. And I was saying I was coming home going, Oh, this is really cool. I’m getting a lot of a lot out of this.
Bill Gasiamis 21:23
And then I thought, I need more than that. I need, I think I need to create a community online. All these seeds were planted by other people, by the way, the word, it wasn’t me that came up with them. And then I just found myself doing the podcast. And then, you know, being 30, 40, 50 episodes in and going, Oh, this is really cool. I’m getting so much out of this.
Bill Gasiamis 21:46
I didn’t know that the stroke survivors on the other end of the Zoom call were getting something out of it as well, which was just my naivety, you know. Just thought it’s a good thing I’m getting something out of it. Bonus. And then I started to really get excited when people started sharing that they were needing that episode, thank you for that episode, it’s great that I found this person, I connected with this person, I reached out to this doctor because of what you interviewed them about.
Advancements in Stroke Recovery and TechnologyBill Gasiamis 22:16
And that was mind blowing. And then it was around episode 40 when I said stroke was the best thing that happened to me. And that’s the thing is, how do you describe that to somebody who’s so early on that you have the opportunity to get there? It might. It’s not the best physical experience, health experience. It’s not that part that’s good. It’s what comes of it later.
Bill Gasiamis 22:39
And I was looking for a word to describe it. I didn’t know, how do you package all of those amazingness and then just say it in one sentence so somebody knows what the heck you’re on about, right? And I stumbled across the work of Richard Tedeschi and Lawrence Calhoun, two researchers in the United States that coined the term post traumatic growth.
Bill Gasiamis 23:03
And that’s me to a T, right? And my book is called The unexpected way that stroke became the best thing that happened. And in there are the 10 steps to get somebody to experience post traumatic growth. They’re the things that I did and all the things that the other people did that said that they had that stroke was the best thing that happened to them.
Bill Gasiamis 23:25
Do you know? It’s so weird, but that is the opportunity that arises and and just for the people listening and everyone know what Post Traumatic Growth means, it’s something that happens after a trauma. The trauma doesn’t have to be a stroke or death of a loved one, trauma is on a spectrum, and it’s different for everybody. So it doesn’t matter what the trauma is.
Bill Gasiamis 23:47
And basically, if you experience after that particular incident, spiritual development, a sense of new personal strength, you improve your relationships, a greater appreciation for life, and you have taken action of or you’ve seen new possibilities you’re experiencing post traumatic growth. That’s what I love it I love come after all of the trauma that you went through and, yeah, that’s what it’s about. It’s about and it comes. It came to me more than anything, after I did things for other people, stopped making about me and started making about other people.
Lara Kaufman 24:36
Yeah, and for me, like one of the first people that I went and I went to the hospital, one of the first patients that I had visited, she said to me, you know, I’ve read about stroke in a book, but I didn’t know what it looked like until you walked in the room, and I was, like, blown away. Like, wow. Like, the impact that I could have. You know, as as a mother, you just want to have an impact on your kids, right? I don’t think beyond that, but to have this kind of impact, like you’re doing as well, it’s quite remarkable.
Internal Carotid Artery Dissection Challenges and Setbacks in RecoveryBill Gasiamis 25:06
It expands your horizons. You know, you go from your identity being I’m a father, I’m a husband, I’m a dad, I’m a I work, I’ve got a job, I’ve got I run a business, to something more than that. I don’t know what those other things are for other people, but for me, it’s somebody you know, who has a community, who helps people, who people help me, who on a connector, I can connect people from all over the world, like now, Stroke Foundation, call me, you know, ridiculously, almost every second day.
Bill Gasiamis 25:39
Can you do this? Can you help out with that? Can you, of course, like you, it’s a yes. So there is something, there is something about it where you don’t realize the benefits for the greater community and yourself, and therefore how you turn up at home, how your example, the example you’re setting for your kids, what happens after a diversity you go through a really tough time, but how can you behave, regardless of what your deficits are, what your problems are, how do you respond? And then you give them a a sense of if if you guys ever find yourself in a terrible situation, here’s one example of how you can tackle it.
Lara Kaufman 26:26
It’s exactly what. So in grade 12, one of my daughters, it was a little thing, but one of your daughters was having a difficult difficulty with her, one of her teachers, and her teacher, I don’t know, just, it’s just, there’s issues. And I said to her, you know, she’s I said, you can give up, or you can, or you can, you know, persevere.
Lara Kaufman 26:47
And I said, Look what I’ve done. You’ve seen me persevere. You know, you can persevere too. Because one thing that’s for sure, guaranteed that shit’s going to happen in life. You know, it happens to everybody in different forms. Sometimes it’s financial, sometimes it’s emotional, sometimes it’s, it’s, it’s, you know, family problems, like, but stuff’s going to happen everybody.
Lara Kaufman 27:13
I believe everybody gets hit with something. So it’s not what you can’t control. What you can control is how you react to those things that happen. Yeah, that’s the one thing we still have, is the control of how to how to respond to that.
Lara Kaufman 27:25
And so you can curl up in a ball and cry and live your life that way, and you know, and your community and friends are probably going to drift off because people don’t want to be, people aren’t don’t want to be around that. Or you can stand up straight, you know, and, you know, dust, you know, brush the dust off and get to work and do what you have to do and what you don’t have to go and volunteer. You don’t have to, just have to get yourself just get back up and and do what you gotta do.
Bill Gasiamis 27:59
Yeah. I think you have to learn, don’t? You have to learn about yourself, about the situation, about how you can heal, how you can overcome. You have to backfill those skills that you didn’t get along the way, that are going to be necessary for you to use to get you to the next stage.
Lara Kaufman 28:16
And what I found is you have to accept. You have to accept what happened soon as you accept what happened that Okay, now what do I have to do? Yes, what do I want to do?
Bill Gasiamis 28:29
Again it opens up more opportunities acceptance. I feel like it just opens up solutions, rather than problems.
Lara Kaufman 28:35
Exactly you go right to the solutions, as opposed to, you know, woe is me, and you know why me? And this is, yes, it sucks. You know, it’s not a picnic, it’s, it’s not a walk, it’s a mountain climb, it’s not a walk in the park, and it’s challenging, and it’s, you’re gonna cry and you’re gonna scream and yell and go through all the emotions, but go through them.
Bill Gasiamis 29:03
Yeah, go through them. Was this someone that you bumped into or that sort of turned up out of nowhere that you thought, Oh, well, and kind of helped you take the next step. Did you have a did somebody? I had a couple of people who sort of turned up out of nowhere, stepped up, became my mentors, people I didn’t expect and and they kind of had, they created a, like a shift in my trajectory.
Lara Kaufman 29:34
I can’t say that new people, per se, my husband was my wasn’t, is my rock. And he, you know, Google spoke to everybody, anybody possibly could, about stroke recovery and where to go. And so he laid the groundwork and found all the right, you know, people to contact, and helped me take those first steps. You know, when I came home.
Lara Kaufman 29:56
You know, the after outpatient. You know, the right, private therapy/therapists and social worker, physio, occupational therapists and all that, and and this, it was all about recovery at the beginning, and then, and then, my doctor was very for my physiatrist at my hospital was also a huge help. She sort of became an unofficial quarterback, and I say unofficial because it was not her role.
Lara Kaufman 30:27
She just, she’s the one who introduced me to the March of Dimes Canada program and said, you know, this is the person, this is the contact person you call, you know, if you want to do this. And so I, I called, you know, got involved, and then from there, got involved in lots of other things afterwards.
Bill Gasiamis 30:49
Did you have moments? Go ahead. What were you going to say?
Lara Kaufman 30:55
My friends rallied around us. Our friends and family were huge. Was very lucky to have a massive support system.
Bill Gasiamis 31:03
Yeah, yeah, it’s really important.
Lara Kaufman 31:07
Cousins drove me to my feet to my therapy appointments, and when my mother couldn’t do it. So it was very fortunate to have that support system. Not everybody has, and everyone rallied around us and brought dinners to my home, for my family, um, picked up my kids, took my kids, my best friend, organized like a grocery list, grocery shopping every week. People would sign up to do groceries for the every week for my family, um, and and organize pickups for my kids play dates and people’s and other after school programs. So I was really lucky to have that.
Bill Gasiamis 31:49
Yeah, wow. What a community. That’s awesome.
Lara Kaufman 31:52
And people who I wasn’t friends with, would, like, call my friends and say, you know, how can I help? I want to do something. So it was, it was amazing.
Lara Kaufman’s Journey and TraditionBill Gasiamis 32:02
Yeah, you do find people come out of nowhere all of a sudden, yes, family and friends, they’re obliged to an extent. But then there’s also, there’s, I’d say, some people, random people who I knew, but yeah, really know who did so much. And it’s and it was like, and then they did their job, and then they kind of went off and disappeared again.
Bill Gasiamis 32:24
I was like, Well, what’s all that about? I mean, I’m grateful for the way that it happened, whatever. I don’t have any expectations beyond that, but it was just amazing. They’ve just rocked up, done the they put the cape on, they did their thing, and then they just slowly, kind of, you know, went back to the place where they were when we knew eachother.
Lara Kaufman 32:49
And I was okay. I was very grateful for what I got. I never really questioned or said, yeah, oh, you should have done more. You should have done this. I was just very grateful for what I got. Yeah, not a lot. It was very grateful.
Bill Gasiamis 33:01
Yeah. Did you have surely, there were times when you had doubts and concerns and worries about everything you’re going through, what the future looks like. Are you that?
Lara Kaufman 33:13
At the two and a half year mark when the doctor said in the hospital, it’s going to take two, three year to recover. So I get to two and a half years, and I’m like, This is it? Like, seriously, after everything I have done for the past two and a half years, this is all I got. And I was like, and my physiotherapist said, it’s not true. It’s not true. You, you stop recovering when you, when you, when you just when you give up. If you don’t give up, you’ll still, you’ll always recover.
Lara Kaufman 33:45
He goes, you’ll plateau. Your recovery will be your your your prove your plateau. You’ll improve plateau. You’ll you’ll do this. And he said, so don’t listen to that. And he was right. And I have five plateaued many times over the 15 and a half years, and sometimes I taught for six to seven months where I’ve just been the same, but then I keep going, and then I start to see improvement, and so on and so forth. So my biggest pet peeve is when is is hearing people say the doctor said I’d never do dot, dot, dot. Because then a lot of people sit say, Well, then why should I even try? And that is, I get very angry.
Bill Gasiamis 34:28
I don’t understand why a doctor would say, you’ll never and then make a statement about it.
Lara Kaufman 34:35
They don’t know the doctors that save your life in the hospital, they’re not involved in the recovery. The physiotherapists that are, but even, like I’ve spoken, I do a lot of public speaking at universities and speak at like physiotherapy conferences and stuff, and I’ve said, you know, if you never use the word never, because you don’t know.
Lara Kaufman 34:59
Unless you’ve got, unless you’ve got a crystal ball, you don’t know, yeah, yes, you know what science can tell tells you. But science is improving every day. There’s new technologies and therapies being developed every year. And one of the things I did was, in addition to my husband, is I’ve researched the stroke recovery industry to see what’s new in the industry.
Lara Kaufman 35:22
And I see these new, new technologies and therapies being developed all over the world, and they’re coming to all, you know, in Australia, I’ve heard things, I’ve seen things in out of the United States and Canada and Israel, Germany, you know. And new things are coming out all the time, and so never and I actually, last year, I went to town called Victoria, British Columbia in Canada.
Lara Kaufman 35:53
It’s in the West Coast, and a doctor developed, I have had a lot of spasticity, and this doctor developed this new therapy treatment called cryoneurolysis. And basically what they do is they inject a very cold needle of minus 88 degrees into your spastic muscles and nerves, and it with the with the water in your muscle, it creates an ice ball.
Lara Kaufman 36:21
That ice ball effectively destroys the nerve, and the destruction of the nerve, then you basically it’s like the middle man between the brain and the muscle, takes away the spasticity and just and for minimum of six to nine months, so sometimes even longer, and I went last June, and it was brilliant, and it was a game changer.
Lara Kaufman 36:45
I had no movement in my arm. I couldn’t my tricep was so tight that you I was like straight was my right arm, but it was straight. And now I can, with with assistance of the back of the with my shoulder stabilization. I can do a bicep curl. You know, I may go back in September for my fingers, my fingers, I still can’t open them. I can make a fist, but I can’t open them. So he said, he would consider maybe doing some different muscles this time, but it was a huge thing.
Bill Gasiamis 37:23
Can you ask him for me if he would be on the podcast? I’d love to interview him.
Lara Kaufman 37:27
Oh, he probably would in a heartbeat. Yeah, please. He’s the nicest man, and he actually went to Europe, I don’t know how long ago, and he saw they were doing some things like this in Europe, and then he with, with no money, he started this clinic in Victoria, British Columbia, and he’s now training doctors from all over the world to learn this treatment.
Lara Kaufman 37:57
You know of a physiatrist in in Melbourne who would be interested in, like, who’d be interested in learning this? He can go to he or she can go to Victoria and train.
Bill Gasiamis 38:09
Well, I’d be up for looking into that, learning more about it, and then going from there. It’s the kind of information that people with spasticity, who stroke survivors are so many of, oh yeah, would love to hear about. And if it’s that, if it’s it doesn’t seem that invasive.
Lara Kaufman 38:28
It’s painful, but it’s not invasive. There’s no drugs, and they’re not injecting anything into just putting a very cold needle into you. So it’s, you know, using the water and, like, it’s, yeah, it was amazing.
Bill Gasiamis 38:47
And then pain, decreases your pain, and all that type of stuff?
Lara Kaufman 38:52
It decreased my pain, my discomfort. And, you know, I was able to, like, lift my arm all the way back this, whereas before I could get to here, now I can go all the way back, and the spasticity has returned. It has not, not as bad as it was before, but it has returned.
Bill Gasiamis 39:15
And then do they know why it returns?
Lara Kaufman 39:20
Because your nerves grow back. The nerves get destroyed, but they do grow back, but it takes six to nine months. So what it does is it gives you a six to nine month window to do rehab, whereas, I’m sure you’re familiar with Botox treatments, Botox gives you a three to five week window. You know, three to four times a year. This gives you a six to nine month window to gain movement, instead of that three to five week window, which is tiny, yeah, and I did Botox for 14 years and got that much improvement.
Bill Gasiamis 39:57
Zero, yeah, I know some people have it’s very hit and miss for a lot of people, what was that treatment called again?
Lara Kaufman 40:04
Cryoneurolysis.
Bill Gasiamis 40:06
Alright, everyone Google the heck out of that.
Lara Kaufman 40:08
If you Google cryoneurolysis spasticity, I don’t know I could spell it. There’s a YouTube video of doctor Paul Winston.
Bill Gasiamis 40:29
We’re going to find it. We’ll have the link in the show notes. We’ll make sure people can watch it, and then I’ll have, I’m going to reach out. I’d love to interview the doctor about that.
Lara Kaufman 40:38
Dr. Paul Winston out of Victoria, British Columbia.
Bill Gasiamis 40:42
Yeah. Okay, excellent. So that’s the thing, right? 15 years ago that wasn’t on the on the horizon.
Lara Kaufman 40:53
Exactly, that’s even 10 years ago. So that’s why I’m saying, like, new things are coming out all the time, you know? So you know, the best time to have a stroke is 20 years from now. Apart from that, it’s today.
Bill Gasiamis 41:06
I read the book Think and Grow richer by Napoleon Hill. I think I read it about 30 years ago and in and the book was written in, I think, the 1920s and you know, Napoleon Hill has a reputation for being a bit of a kind of like a capitalist, you know, the worst kind of capitalist, I think there’s a lot has a bit of a reputation for that.
Bill Gasiamis 41:29
But what he was doing was sharing stories about how you think, how you put your mind, into work, and the results that it gives you, you know what you think is perhaps what you’re going to get anyhow, one of the passages I specifically remember was that his son was born deaf, I believe, either in one year or in both years.
Bill Gasiamis 41:55
And the doctors back then said that he’ll never be able to hear anything, because he’s been he has been born deaf, and then, sure enough, the first iteration of hearing, surgeries or devices to help people hear start to come, start to be invented around 20 or 30 years after his son’s born, and Sure enough, his son gets to be able to hear and it’s the story that you read 100 years after it has been written, and you go, Oh man, like the thinking hasn’t changed, the way you approach life hasn’t changed, the way you talk about problems hasn’t changed.
Bill Gasiamis 42:42
Everything is basically the same. We’re the same as we were back then. The times and circumstances and some things might be different, but general ways to go about life are never, are never, never different. They’re always the same. You always have to have the same philosophies that people have used for 1000s of years. That’s why we get so much when we learn from the ancient Greeks, it was 2000 years ago, and we pick up those books, and we read about them, and we hear about them, and we apply them to our lives, and we say, wow, that’s transformative.
Bill Gasiamis 43:14
Well, it’s not it’s just humans. It’s just what humans do, and certain things impact you in a negative way, and certain things impact you in a positive way. And if you’re a doctor, and you go through all the study, all of the cost, all of the effort, all of the hours at the hospital, all of these things, years and years and years, 1000s and 1000s of dollars, hours and hours and hours, you get a patient, they have a stroke, you patch them up, and just before you send them home, you finish with you’ll never do that again. What’s the point of it all?
Lara Kaufman 43:53
Yeah, my my doctor actually said to me, you know, after I says, After telling me, you’ll never do blah, blah, blah, you’ll never play piano. You’ll never, you know, type, use your use your left hand to type on a computer. And I looked at him, and he’s like, prove me wrong. Now, I haven’t been able to do that yet, but I say yet. I always say, yet, yeah.
Lara Kaufman 44:16
But then, you know, years later, when I saw him at one of my appointments, he goes, You know, I have he goes. He goes, I have to, I have to learn more about the human will, because I’m seeing that the human will plays a huge role, you know. And I really believe that attitude is everything, yeah. And the best part about it positive attitude and gratitude, that it’s free, doesn’t cost anything to be grateful, and yet it can actually help. It can actually improve your recovery.
Bill Gasiamis 44:45
Absolutely, there’s a chapter in my book about it. It’s the it’s your mindset. It’s the first chapter in my book. If you’ve got the wrong mindset, all the rest can forget about it. Yeah, have the right mindset, you have to apply a recovery mindset.
Lara Kaufman 44:59
There was a study. In the US, of on US war vets who suffered traumatic brain injuries, and it proved that the ones who are more resilient recovered better and faster and stronger than once someone’s who didn’t. And resilience is like a muscle. The more you use it, the stronger it gets. So, yeah, you know, tap into you can tap into your resilience, which you have. Everybody has. You know, you can actually recover better, stronger and faster.
Bill Gasiamis 45:27
I have a little bit as well. I have a theory about my my guests on my podcast compared to the people who are not on my podcast, not saying that everyone has to be on my podcast to have the why? Not? They do. They do. I need to get to 1000 episodes. But that’s not the point. The point is like people who are sharing on the episode are demonstrating something every single episode, and every person is different, but they are all demonstrating something.
Bill Gasiamis 45:59
And that’s something to me, is like the willingness to talk about, learn from expand your mind, your horizons, share information that you’ve gained and learned, and those things come together and are a very important part of your healing and your recovery.
Bill Gasiamis 46:18
The the willingness to want to turn up to a podcast and share your story in the hope that it might help other people, says something about how far your recovery has come. And that doesn’t mean that the amazing people who leave comments, who subscribe, who help me with Patreon, who watch the YouTube ads. It doesn’t mean that they’re not doing that.
Bill Gasiamis 46:42
What I’m sort of saying is, is that I think that sharing on a podcast, regardless of whose it is, is like shows you’ve arrived. It’s the next level, the thing that you what else can I do to improve my recovery? I’ve done nutrition. I’m sleeping better, I’m exercising more. I’m more grateful I have good I’ve improved my relationships.
Bill Gasiamis 47:04
Like, what’s next? Well, now it’s about other people. It’s how do I impart my wisdom, my knowledge, the things that I’ve gained, onto other people? That whole thing sort of suggests that you’ve arrived not at the very end of the whole thing, but at a next stage, at the next level, I’ll call it the next kind of like, well, we’ll just call it a stage. You know, you’ve arrived.
Lara Kaufman 47:31
The Gasiamis effect.
Bill Gasiamis 47:32
Yeah whatever, we’ll give him my one, yeah, we’ll give him my Gasiamis. You’ve arrived to stage Gasiamis or something I don’t know, not at all doesn’t have to be on my podcast. But you know what I’m saying? It’s about that you’ve made it about others. It’s not about you anymore. Even though the podcast sharing is about you, it’s also not about you.
Bill Gasiamis 48:01
And, I think that would be lovely if people said, I’ve been listening for three years, and now I finally decided to reach out to be on the show. I mean, that would be great, because they perhaps gained courage, they perhaps confidence. That perhaps gained wisdom, knowledge, you know, is Yeah, stage you have somewhere, yeah.
Bill Gasiamis 48:26
So I love what you’re saying there. And you know, the statistics are statistics for a reason. They they are just there to inform a way forward from a certain situation out of a hospital, just for the time being. As statistics never stay the same. They always change as the population changes, as our abilities change, as our technology changes, statistics always move.
Bill Gasiamis 48:55
And you can’t take one snapshot in history and go, I’m going to apply that to every single stroke survivor I meet afterwards for the next 15 years, it’s just not it’s not smart. That’s not what you do. You use it to inform your decision at the time, but then at some point, those statistics are no longer relevant because things are completely different.
Bill Gasiamis 49:16
And anecdotal evidence should inform you enough to say, Okay, I have, I’ve told 10 strokes survivors they’re never going to do X again. And I never followed up to find out if they did do X. And that’s the that’s my biggest challenge, is they make a statement, they send you on the way, and they never call you up and say, by the way, did you ever walk again or whatever, again, and it frustrates me no end. It’s one of the my biggest pet peeves. Don’t believe him.
Lara Kaufman 49:51
And the thing is, like, you know, like I was talking with my physiotherapist a couple weeks ago about, you know, recovering my arm, and I’m putting in, you know, three. To three, three to four hours a day of rehab, just in my arm, you know, for the for the past year, and, you know, in hopes that it’s going, I’m going to get the use of my arm back. Yeah, I have no guarantee.
Lara Kaufman 50:12
There’s zero guarantee is there’s hope, and that’s what I’m, that’s and that’s what I’m, what’s what I have hope that it will, you know, make a difference. And he said to me that the reason that there’s no there’s just, you know, there isn’t documentation for somebody 15 years post stroke, who’s putting in this many hours a day, you know, to the statistics aren’t there. So then it’s just all on me. So you’ll get it. You’ll get these. You get partial use of your arm, all of it, you know, or you won’t get any. Well, I already have some. I can already, you know, do some things with it, but.
Bill Gasiamis 50:51
One guarantee is that if you do nothing, you’ll definitely get nothing.
Lara Kaufman 50:56
That’s my saying. I my I have a quote. There’s two guaranteed things in life, death and taxes. I have found a third do nothing and nothing will happen. Do something, and you can get this much, this much or that you don’t know, but you don’t know if you don’t try.
Bill Gasiamis 51:14
You have to go after it. I completely agree. So looking back on your journey, 15 year journey. How have you changed, physically, emotionally and or mentally? Are you a more expanded version of yourself? What are the what are the biggest lessons been?
Lara Kaufman 51:38
Oh, that’s a big question. Um, physically, I’m like, I’m able to, I’m just, I’m independent, I’m I drive a car, I do my grocery shopping. I’d run errands. I, you know, able to. I’m physically active, not like I was before, obviously, but I am physically active. Um, you know, my husband, are traveling the world.
Lara Kaufman 52:04
Something that we really want to do, coming to Australia is going to be a is a big trip. It’s, you know, we’re going to be doing a lot, and I didn’t want to give it up. And I, you know, I didn’t want to give up something that I love to do.
Lara Kaufman 52:20
So I’m doing it. It’s a challenge. There are some we’ve had some interesting challenges, but we just kind of, I suck it up and do whatever, just do the best that I can do, you know, given the situation, and that’s so I’ve, I’ve, I’ve learned to be more accepting of myself and learn to give up, not give up things that I want, but except in a different way.
Lara Kaufman 52:51
I believe I’m more grateful for what I have than, probably what I, you know, prior to more accepting of people, other people as well. It’s, it’s so hard to say because I don’t remember exact I never asked myself, like, what was I like before? Like, I don’t remember sponka. You know, I was 41 years old when this happened, you know, so I don’t remember like, I and I think, you know, what’s interesting is that you know, right right after the stroke, I could remember everything.
Lara Kaufman 53:37
You know exactly the way I was and how I am, how I was, post and pre. And you know what I felt when I when I had a bad day? It felt like it was like a really bad day, even though, you know people, you can have strokes of hours. Have bad days. Normal people, regular people, have bad days.
Lara Kaufman 53:57
And what I didn’t realize, what my social worker points out to me, she’s like a lot of people put their pre stroke life on a pedestal, and they think that they were here when they probably were here, wow, and now here. So they would, they think that, that they fall in, you know, so much further than they actually did, because pre stroke was, that was this glorious life where you never broke a nail and nothing bad ever happened, you know, and we all know that that’s just not true, right?
Lara Kaufman 54:29
So when she said that to me, I realized that the fall, yes, I fell, but I didn’t fall as far, the drop wasn’t as big as I thought may, and how that me kind of put things to perspective. But now that it’s been so many years, I don’t remember, yeah, I think I was as good of a person as thin as I am now.
Bill Gasiamis 54:52
I love it. I love it. The Fall, how far you’ve fallen. That’s really amazing, isn’t it? That’s all tied to identity. I think if you identify it as somebody who, if your identity was shallow or or confined to some small number of things, I am a office worker or I’m a gym junkie, I am a whatever I am, and there wasn’t a larger version of that, and now you’re not those things, then you could see the fall from grace, supposedly could be, yeah, appear more dramatic than it is.
Bill Gasiamis 55:31
And then the idea is to expand your identity. Is to find, even though I’ve had a stroke, what what can I become? It’s not about what I was and and why can’t you be a gym junkie that has left side deficits? I mean, I’ve interviewed stroke survivors who were power lifters. One particular lady was a parallel power lifter. Her left side, I think, was the of a scrawny little kid. Her right side was the size of a power lifter.
Bill Gasiamis 56:04
She was completely but she was a power lifter, and that’s the thing we haven’t you’ve got the opportunity to redefine your identity and to start moving in directions you’d never done before. I mean, there’s so many stroke survivors who have probably won gold medals at the Paralympics and on all sorts of world stages that weren’t in that space before stroke, and never occurred to them to do or to compete in that kind of way until after they had this stroke.
Bill Gasiamis 56:36
So you that it’s just imaginary. The whole pedestal that we fall off of is imaginary 100% and if you are, and if you sort of associate your success with I achieved X, Y and Z, or I had this much money, or I worked that many hours, or then again, you’re limiting yourself based on what you do, not who you are as a human person, you know, like, what you do.
Lara Kaufman 57:09
That’s what I mean. What was I before my stroke, I was a full time working supermom, yeah, you know, who would try to do, you know, kill, multitask as much as possible, you know. So when my kids went to karate, I went grocery shopping and, you know, at the same time, because God forbid, I should spend the 45 minutes watching them do karate. You know, I had to go do an errand because I was working during the day.
Lara Kaufman 57:39
And, you know, try and kill as many birds with one stone kind of thing is as possible. Was Michael, after my stroke, I couldn’t read a magazine and eat breakfast at the same time because, like, if I would read and forget to eat, or eat and forget to read. So I couldn’t multi, like, that’s considered multitasking. I couldn’t do that. And, you know, as a point, you know, once I was able to do it. Now I read during breakfast every day as kind of as a screw you stroke thing.
Bill Gasiamis 58:11
That’s training as well. It’s multitasking, and it’s helping Neuroplasticity and all sorts of things. Yeah, yeah, yeah. I love it. So you you probably see stroke as something that shaped you in a very meaningful way.
Lara Kaufman 58:25
Yes, it’s given me a purpose, for sure, to help, to to help others. And it’s really given me, you know, I went from accounting, which is great, you know, but it’s a job, you know, to, you know, actually helping people with their law, helping people get their lives back.
Bill Gasiamis 58:46
Yeah, and it’s it gave you meaning, not like you didn’t have meaning before you had children and, yeah, family, but it’s expanded it, right? So that’s the thing, that’s another thing that people don’t seem to realize early days of stroke, is that meaning doesn’t have to end because you had a stroke and now you’re not doing all the things you did before, your meaning can can also be expanded. You can be a parent, even though you’re not the karate going parent anymore, you can still parent in a different way.
Lara Kaufman 59:18
In fact, actually, right after my stroke, when I couldn’t do anything except for sit on a couch basically, and watch TV all day. You know, I felt like I had lost my identity and and somebody said to me, you know, you’re still a wife, a mother, a daughter, a sister and a friend, and so I could be all these people from the from the spot on the couch, yeah, right. I could play all these like it’s still, you know, nag my husband. I could still, you know, give him crap when he did something.
Lara Kaufman 59:51
I could still tell my children what to do. I could still do all those things. Still, you know, have lunch with my sister or my friends. They could. Still do all these things from the very comfort of my couch. Yeah, you know, being unable to walk, being unable to move to to drive a car, to do to work, to do all these things. And so when I realized I had, I could, I could wear all these raw wear all these caps in the comfort of my house, the comfort of my couch that helped me, that gave me hope that I I’m not useless, because I did feel useless at the beginning. Yeah. What good am I? I can’t do anything. I can’t do anything.
Bill Gasiamis 1:00:37
Well, it’s such a big shift in a very quick shift from being super mum to being couch mum.
Lara Kaufman 1:00:44
Not even nailed a little, big bathroom by myself.
Bill Gasiamis 1:00:47
It’s so dramatic. And it completely makes sense people find themselves there. The idea is, okay, it’s temporary. It is. It might seem like forever when you’re going through it, and it might feel like never ending, but it is temporary. Now on this in the span of a lifetime, it’s temporary in in the span of the two months since the stroke and since you found yourself on the couch not being able to do anything.
Bill Gasiamis 1:01:15
Okay, it seems like forever, but it’s gonna go, it’ll it’ll pass. You’ll look back and you’ll go, my gosh, it was five years ago. I had this struggle. It was 10 years ago I had this stroke. I can’t believe how quickly it has gone for me and seemed slow at the same time too. I’m experiencing, you know, two versions of time all at the same time, quickness and slow. Yeah, exactly. So I don’t know how I got here that quickly, and it took so long. Does that make sense?
Lara Kaufman 1:01:50
So true, and I was in the hospital for four months, yeah. So this was, you know, I didn’t get home till four months post stroke, and then I could, I still couldn’t go to the bathroom on my own. But because, but I, but, you know, as a 41 year old mother who toilet trained three children, you know, I was determined. So the first thing I learned to do when I came home from the hospital was teach myself to go to the bathroom by myself. And was the first thing I did. And I did it pretty quickly. I think, you know, I don’t remember how many weeks it took, but look, I just want to close the bathroom, close the door, not if somebody’s standing next to me.
Bill Gasiamis 1:02:34
That’s a fair, a fair request.
Lara Kaufman 1:02:37
Yeah, you literally take your dignity and leave it somewhere else after a after a stroke, for many people.
Bill Gasiamis 1:02:45
Yeah, that’s a very, very, very important milestone in anyone’s recovery, to be able to toilet themselves.
Lara Kaufman 1:02:53
Did you have physical deficits after your stroke?
Bill Gasiamis 1:02:55
Yeah, so physically I was all good until surgery, and then after surgery, one of the complications was I woke up with left side deficits, couldn’t feel my left side, couldn’t walk, couldn’t use my left arm a whole lot, and had sensory issues, still have numbness and little bit of spasticity. It doesn’t close any of my fingers up, but I feel it in my muscles, the way that they open and expand and contract, they get painful.
Bill Gasiamis 1:03:30
It puts me out of balance on my leg, so my leg is a little bit weaker, my left leg, so I tend to sway a little bit when I walk. I bump into my wife all the time and walk next to each other, and she’s always complaining, why do you keep bumping into me? It’s like I become magnetic.
Lara Kaufman 1:03:52
Love, touch, love, touches.
Bill Gasiamis 1:03:57
Yeah, I’ll rename him actually, yeah. I love that. And what happened after surgery was I found myself day day one out of surgery, nurse came to me and my bed said, have been to the toilet yet? I said, No. Said, Okay, let me help you go to the toilet. She was on my left side. I reached off the left side of the bed, put my left leg down, and I’m not I’m like hours out of surgery, collapsed in in intensive care, or wherever I was, whichever unit I was in, I don’t think it was intensive care.
Bill Gasiamis 1:04:31
It might have been high dependency, and I’m on my ass hours after surgery, first fall after surgery, what with a nurse standing next to me, she was tiny. I’m I’m not quite six, or I’m probably about 5859, and she was tiny compared to me, and she probably went, half what I weigh, and she goes, I’ll help you. And put your arm around to be well, it made no difference. I’ve put my arm around her, and I was just bang straight on. The ground, and screamed my lungs out, and then realized, okay, I cannot walk.
Bill Gasiamis 1:05:06
Then they put me back into the bed, and my surgeon comes along, and she goes, What’s going on here? And I said, Well, I can’t, can’t walk. I fell out of my bed. And she said, Okay, I’ll put you into rehab. In rehab, I got to rehab seven days later. By the time I went through all the after surgery staff, and they were trying to suss out my situation, where I was at, and I remember being in the ward now waiting day two, I’d say, being in the ward, waiting for the nurse to come after I press the buzzer to go to the toilet knowing I can’t walk.
Bill Gasiamis 1:05:44
And they’ve put me on laxatives, slow release laxatives for two days so that their bowels can move, because they hadn’t moved yet, and then they kicked in. And then I’m at I’m on in my bed. The nurses aren’t coming back after I’ve pressed the buzzer, and there’s a wheelchair next to my bed, and I lean forward with my right side, I grab the wheelchair, and I drag myself off the bed, and I end up in the wheelchair.
Bill Gasiamis 1:06:11
And I can’t push it much, but I’m pushing it as much as I can to get to the door of the toilet, which is at the end of my bed. It’s literally three meters away, four meters away, to get to the end of my bed. And I get into the toilet. I open the door, get into the toilet door, and the nurse turns up. He said, What are you doing? I said, I’m trying to go to the toilet.
Bill Gasiamis 1:06:30
She goes, you’re supposed to wait for us. I said, I’ve been waiting for ages, and I’ve gotta go I’m busting, I’ve gotta go. Please get me onto the toilet. They get me onto the toilet, and then they’re not leaving. And I said, okay, yeah, go now. She’s like, I can’t leave you in here alone. You’re a high risk of falls, all that kind of stuff. Have to stay with you.
Bill Gasiamis 1:06:55
I said, there is no way I’m going to let you stay there. You have to please close the door. Just go to the other side of the door. Please do not stay in here with me. We argued for what seemed like forever. We didn’t really argue, right? I was just being begging her, basically, I got to begging, and she finally said, Okay, I’m gonna go behind the door. Do not get up. Do not move. I said, I swear to God, I’m not going to move or do anything.
Bill Gasiamis 1:07:22
I’m just going to do what I have to do, and I’ll call you as soon as I’m done. And sure enough, we went through that process and we got done. But that was my first experience, you know, my realization that things are not well and things are not going exactly as I planned or thought they would, and I’ve got to have to challenge myself to overcome some more of these issues that I never experienced for three years of brain hemorrhages, because I had my brain hemorrhaging three times over almost three years.
Bill Gasiamis 1:07:52
So I had deficits. I had memory issues and cognitive issues and speech issues and fatigue and every kind of issue you can possibly imagine, uh, after the bleeds, but never anything physical. And this was the first time. So it was quite a, it was quite a, quite a drama. But like you, I don’t know what it was. I just had this weird kind of calm amongst all the chaos, because there was also chaotic moments, etc.
Bill Gasiamis 1:08:26
I had this weird calm, oh, you can’t walk. Oh, all right, well, we’re gonna have to learn how to walk again. I wasn’t quite concerned that I’ve got to walk. I was just concerned that I couldn’t go to the toilet on my own and and I didn’t know if that would come back or not, but it was a big drama right there. After the moment passed, I went back to regular chill, relaxed bill in the in the bed, just waiting for things to happen, you know.
Bill Gasiamis 1:08:53
So I had this under I had this calm about all the obstacles that were in front of me, I just figured they were obstacles. It may have helped that I did a lot of counseling and coaching beforehand. It may have helped that I had already started to kind of reach out to medical professionals and learn about Neuroplasticity and all that type of stuff. But I didn’t take any of the setbacks as permanent. I just took them as stuff I’ve got to overcome. I didn’t know, how.
Lara Kaufman 1:09:26
Yeah me too, I think for me, it was just delusional, or just not. I didn’t understand the gravity of what had happened. Yeah, okay, this is what this is. I can’t walk right now. I can’t do this. Okay? Well, I will, you know, it’s gonna take, I’ll rehab, yeah, like, I’ll rehab. Just like, Yeah, I’ll just rehab. We have my way back.
Bill Gasiamis 1:09:48
And I had this bigger picture understanding, you know, where I and I love to throw in this example every time I remember in the podcast. Last episode. It’s like Stephen Hawking, the great physicist you know, who was at the top of his field and had zero ability to move a single muscle in his body for the majority of his adult life. And it’s like, if that’s the if that’s what’s possible, well then, you know, I don’t need to get overwhelmed or over, uh, overly concerned about all the challenges that I might face that I don’t know about, because that’s what it was possible for this, you know.
Bill Gasiamis 1:10:37
So once you sort of expand your thoughts about like what people are achieving in life, and who is the most limited person in the world and achieving the most in the world. Stephen Hawking, well, then I don’t know what’s what? What’s the excuse to focus on all of the problems and all of the deficits and all of the obstacles? What’s the what’s the excuse? There’s there’s no credible reason to be focusing on all the things that we can’t do.
Lara Kaufman 1:11:07
That’s actually a really good way. They never thought of that. But you’re 100% right.
Bill Gasiamis 1:11:13
Once you start at the at that level, it’s like, okay, all the rest is in the mind, it’s all arguably, it’s all bullshit. It’s all just shit you come up coming up with to limit yourself because you’re afraid or something.
Lara Kaufman 1:11:26
And for me also, like I also learned 10% of people who have a stroke die, yeah, and I didn’t. And so there’s just based on the fact that I’m alive, there’s a greater purpose for me, there’s, I didn’t survive. Just, is it just luck? I didn’t buy it, you know? Yeah, I there’s, there’s a reason, yeah, um, also my, in addition to what I said, best thing I said earlier.
Lara Kaufman 1:11:59
So when I had my twin daughters were born via gestational surrogate, um, with three years of infertility, and then we they were born, and then they were 14 months old. I got pregnant. We call it Immaculate Conceptions. We have no idea. We had two. We had 214 month old babies, you know, walking around, crawling around, and so we weren’t looking for a third, or wasn’t planned.
Lara Kaufman 1:12:31
And, you know, so when something good happens, you call it a blessing. So what? What do you see? You call it a curse when something bad happens. I don’t believe it. I don’t believe in curses. So I remember, I remember when I got pregnant with my son, I remember thinking how the stars had to been lined up, just so for me to get pregnant with all the issues that I had, and so it was meant to be.
Lara Kaufman 1:12:58
So my my because my ski accident was also a freak accident. The stars were lined up, just so, for this to have happened, it was, it’s meant to be. So if it’s meant to be, then there’s going to be something. There’s good. Good has to come from this. And so then I said I was like, looking for it for a while, and then eventually, you know, I found, I found the good and helping other people, and it made me feel good, and I was helping other people as well, and just gave me a sense of purpose. Yeah, the greater than more beyond being an accountant.
Bill Gasiamis 1:13:40
Did you put away your skivvy and your blouse and all that kind of stuff?
Lara Kaufman 1:13:48
We don’t have that, never did accounts, those for lawyers, not accountants for accountants. Get a calculator. I love it. But actually, my son is, is actually in the school to become an accountant, and my father was an accountant, so he, if he, when he, if he passes his exams this September, he’ll be the third generation in our family, so, and I’m helping him along.
Bill Gasiamis 1:14:16
There’s a history there. That’s great. There’s nothing wrong with that. It’s a great profession. Of course, we’re just playing around. If anyone is an accountant, don’t get offended. We love accountants. They keep us probably paying less tax or something and out of jail, yeah, for sure, it’s been a real pleasure getting to know you and chatting to you.
Bill Gasiamis 1:14:36
Thank you so much for joining the podcast. I’ve got one question that kind of comes up every so often, is, why after 15 years, is it necessary for you to join me on the podcast? Like, do you know what I mean? I always think about me as being strange and bizarre that I’m 12 years out and I’m still thinking about stroke, and talking about it every day, like, why do you feel the need to still share about it on the podcast?
Lara Kaufman 1:15:07
Because I feel like I’ve been successful, not 100% but I feel like I’ve been successful. And so if I can do it, I think other people can too, and as long as they I believe that, you know, we would joke, because when my speaking, I my husband refers to me as the goat of stroke survivors, you know, and so and, you know, maybe he refers to me as that. But I think that I’m just one of you know, 1000s of other people just like me, who, if you get the right maybe navigation, you know, tools. You can be just like me too, and have success.
Bill Gasiamis 1:15:48
I love it. I love that you have success and it’s despite what you didn’t get back, or what you potentially supposedly lost.
Lara Kaufman 1:16:02
I’m grateful. I have a good life.
Bill Gasiamis 1:16:06
I love that. That’s a great way to frame it, is, even after all this time you’ve had success. And that is what I hope for every stroke survivor listening, is that they can get to that stage where they can feel like they’ve had success, a small one, a little one, a big one.
Lara Kaufman 1:16:22
Yeah. And what we do? I should have mentioned this earlier. What we do in our family. My husband started this four years post stroke. Is every year on the anniversary of the accident, we celebrate with a cake, and we put a word on the cake. So the first year was my husband and daughter were talking the day before, like on February 12, 2014 he goes, do you know tomorrow? She goes, yes, the day Mommy had her accident, and he said, how should we celebrate it? She goes, we should buy a cake.
Lara Kaufman 1:16:49
And he goes, Okay, let’s put a word on the cake. What word should be? She goes, accomplishment. And then every year, you know, my other daughter picked the word. The following year, my son, then it was my husband’s turn, and then it was my like, you know, so every so we have, every year I’ve got, like, I don’t know, it’s 12 years now, 12 years of 12 cakes and every one there’s a word.
Lara Kaufman 1:17:12
So now I look every February 13, we look forward to what’s the word going to be. We figure out who’s going to pick it, whether it’s someone in the family or a close friend. And, and, you know, I look forward to, the anniversary to see what word is going to be chosen.
Reflecting on Lara’s Achievements
Bill Gasiamis 1:17:27
Yeah, that’s a great way to reframe it, and an amazing tradition. I love it. On that note, Lara Kaufman, the goat of stroke recovery. Thank you so much for joining me on the podcast.
Lara Kaufman 1:17:40
Thank you. Thank you.
Bill Gasiamis 1:17:43
Before we wrap up another thank you to Banksia Tech for supporting this episode and making stroke rehabilitation tools like the Hanson rehab glove accessible to more stroke survivors. If hand movement is part of your recovery, this glove might help visit Banksiatech.com.au, or use the links in the show notes and the YouTube description.
Bill Gasiamis 1:18:05
Now, let’s pause and reflect. Lara Kaufman didn’t just endure a massive ischemic stroke caused by an internal carotid artery dissection. She didn’t just survive paralysis, craniotomy and years of uncertainty. She went further. She mentored other survivors. She co-facilitated support groups. She even tried a cutting-edge treatment, cryo neurosis, and saw breakthrough results.
Bill Gasiamis 1:18:34
And every year, she celebrates her stroke anniversary with her family by choosing a word and putting it on a cake a word like accomplishment, gratitude, purpose. But she’s not just recovering. She’s redefining success, one word, one step, one story at a time. If this episode resonated with you and you’d like to help me reach 1000 stroke survivor interviews, consider supporting the podcast on Patreon, your support covers the editing, publishing and sharing of real recovery stories like Lara’s.
Bill Gasiamis 1:19:08
Just go to patreon.com/recoveryafterstroke, and if you want more stories of post-traumatic growth, check out my book, The Unexpected Way That a Stroke Became The Best Thing That Happened. Written by a survivor for survivors. Links are in the show notes and Youtube description until next time, keep enduring, keep redefining, and remember you’re not just relearning your rebuilding. See you on the next one.
Intro 1:19:35
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed all content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only, and is largely based on the personal experience of Bill Gasiamis.
Intro 1:20:05
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Intro 1:20:30
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Intro 1:20:54
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The post From Stroke to Service: Lara’s Unlikely Recovery Journey appeared first on Recovery After Stroke.
What Every Woman Needs to Know About Stroke Symptoms: Chanell’s Story of Recovery and IdentityWhen you think of stroke, you might imagine it’s something that happens to older men. But the reality is far more complex, and far more urgent for women to understand.
Stroke is one of the leading causes of disability and death in women, and yet many women still don’t recognize the early warning signs, or they dismiss them as stress, migraines, or fatigue.
This is why stories like Chanell Havenga’s matter so much.
A Stroke at 35, During a Routine ProcedureChanell, an adventurous and high-achieving 35-year-old industrial psychologist from South Africa, went into a hospital for a 15-minute cortisone injection to relieve years of debilitating headaches. She never expected it would be the beginning of a long fight for her life.
What was supposed to be a simple medical procedure resulted in a massive ischemic stroke, which left her unresponsive for hours. An MRI later revealed that large areas of her brain had been affected. Doctors told her family she might not survive the night, and if she did, she might never walk, speak, or function again.
Women Stroke Symptoms Aren’t Always What You ExpectMany of the women stroke warning signs Chanell experienced before her event had been dismissed by her and others as “just headaches.” But stroke symptoms in women can present differently, and they’re often overlooked or misunderstood.
Some of the most common women signs of stroke include:
- Sudden and severe headaches
- Nausea or fatigue
- Confusion or memory loss
- Loss of balance or dizziness
- Difficulty speaking or understanding language
- Blurred or double vision
If you’ve been experiencing symptoms like these, don’t wait. Stroke in women is often underdiagnosed simply because it looks different from the “classic” signs most of us hear about.
Relearning Everything After StrokeAfter waking from her coma, Chanell couldn’t walk, talk, or even swallow. She spent six weeks in a rehabilitation hospital learning how to be human again, learning how to sit, eat, and stand. During COVID, visitor rules meant she had to fight for the right to see her support system daily, and she did, advocating for herself even when she had very little voice.
And that’s what makes her story so powerful. It’s not just about surviving a stroke—it’s about fighting for who you get to become after one.
The Post-Stroke Identity Crisis“I remember waking up and thinking, ‘Who the hell am I now?’” Chanell said.
That question haunted her. Before the stroke, she had built her identity around being driven, competent, and full of energy. Suddenly, she was navigating life with neurofatigue, slurred speech, vision problems, memory loss, and hypersensitivity to noise.
What do you do when you can’t go back to who you were, and you’re not yet who you’re going to be?
For many stroke survivors, especially women, this post-stroke identity crisis can be just as hard as the physical recovery. Society often defines us by what we do, but what happens when you can’t do those things anymore?
Turning Pain into Purpose: My Stroke of LuckIn the quiet moments of rehab, Chanell began journaling. She captured her rawest thoughts, fears, and even her sense of humor as she stumbled her way forward, page by page. Those journal entries eventually became her published book:
My Stroke of Luck
Her book isn’t a “pity party.” It’s an unfiltered, honest, and even funny account of stroke recovery from a woman’s perspective. And it’s exactly the kind of support she wishes she had when she needed it most.
“It was the diary I wish someone had handed me in the hospital. Something that said: ‘You’re not crazy. This is just what healing looks like.’”
Why Women Need to Know ThisToo many women ignore the early signs of stroke. Too many doctors misdiagnose them. Too many workplaces and families aren’t prepared to support them when it happens.
If you’ve ever searched for stroke for women, women stroke symptoms, or stroke in women, you know how scattered the information can be. Chanell’s story cuts through the noise. It reminds us that:
- A stroke can happen to younger women.
- Stroke symptoms in women may not follow the “typical” pattern.
- Full recovery isn’t just physical, it’s emotional, mental, and existential.
- Finding purpose post-stroke isn’t only possible, it’s powerful.
Chanell TodayFour years later, Chanell is using her background in psychology and her personal experience to help others. She’s:
- Volunteering at a stroke rehab hospital
- Raising awareness on the radio and in hospitals
- Exploring a podcast for stroke survivors in South Africa
- Offering psychometric coaching to help others rediscover who they are
She turned a life-altering stroke into an opportunity to reconnect with her values, use her voice, and become the guide she wished she had.
Final WordIf you’re a woman, or you love one, take a moment to understand the unique way stroke presents in women. Don’t brush off the headaches, the fatigue, or the “weird feeling” you can’t explain.
And if you’re already walking the post-stroke path, know this: you are not alone, you are not broken, and your story isn’t over.
Sometimes, the most powerful version of you is the one who emerged after everything changed.
Women Stroke Symptoms Often Go Unseen — Here’s What Saved My Life and Changed It ForeverChanell’s stroke at 35 stole her words, but gave her a new voice. Her story is a roadmap for any survivor seeking strength, purpose, and healing.
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Support The Recovery After Stroke Podcast on Patreon
Highlights:
00:00 Chanell Havenga’s Background and Early Life
09:23 Chanell’s Stroke and Initial Recovery
11:28 Identity and Existential Crisis Post-Stroke
27:29 Advocating for Oneself and Overcoming Obstacles
54:33 Chanel’s Journey to Publication and Advocacy
1:14:44 Emotional and Mental Recovery Post-Stroke
1:23:44 Adjusting to a New Normal and Finding Purpose
1:24:43 Reflecting on Personal Growth and Change
Transcript:
Introduction Women Stroke – Channel’s Story
Bill Gasiamis 0:00
Before we dive in. A big thank you to Banksia Tech for supporting this episode, proud distributors of the Hanson rehab glove by Syrebo. It’s designed to help stroke survivors improve hand function at home, whether you’re early in recovery or years into it, and you’ll hear more about it later in the episode.
Bill Gasiamis 0:22
Links are in the YouTube description and at recoveryafterstroke.com. Now, what if the thing that was meant to help you nearly ended your life? That’s what happened to Chanell Havenga, a 35 year old industrial psychologist from South Africa.
Bill Gasiamis 0:39
For years, she battled debilitating headaches. Eventually, she agreed to a cortisone infiltration, a 15 minute procedure she never woke up from. Chanel had suffered a massive ischemic stroke. She was placed in a coma. Doctors told her family that she would likely not make her through the night, but she did, and what followed was a journey of rediscovery, from diapers, silence, and double vision to publishing her own stroke recovery book.
Bill Gasiamis 1:11
Volunteering in rehab centers and helping others find meaning in their mess. If you’ve ever felt like your identity disappeared after stroke, if you’re still struggling with neurofatigue, memory loss or emotional overload, if you’ve been dismissed, unseen or misunderstood, especially as a woman, this episode is your mirror, your map, your reminder. You are more than what you lost. You’re becoming something new. Let’s dive in. Chanell Havenga, welcome to the podcast.
Chanell Havenga 1:46
Thank you, Bill, thank you for having me.
Bill Gasiamis 1:49
Tell me a little bit about what life was like before stroke. For you, what did you do? How did you get around? What were your days like? What was family life like?
Chanell Havenga 2:02
Okay, so I was a working student. So I’ve always studied and worked to pay my studies. And I think you can imagine that’s quite hectic, keeping you busy. I was very adventurous, uh, absolute adrenaline junkie. I loved roller coasters and arts and photography, and I basically spent my life studying. So I eventually graduated my master’s degree, and I’m so happy that happened, and we finally got there, and family life was absolute fantastic.
Chanell Havenga 2:59
Absolutely fantastic. I have such a great family and support system, so everything was just really very compassionate in that aspect. Sport wise, I’ve not, I haven’t really warmed up to sports all my life, but I did find things that gave me joy, such as belly dancing, if you can believe that. And I did compete in South Africa’s. Ms. Billy Dawn South Africa. I really, really enjoyed that so much. There is something about being on stage and the adrenaline pumping. I think this is adjacent to that adrenaline junkie side of me. That is me in a nutshell.
Bill Gasiamis 4:05
Amazing. So what did you get your Masters in?
Chanell Havenga 4:09
I did my masters in industrial psychology.
Bill Gasiamis 4:13
Wow. Okay, that’s a pretty cool field, industrial psychology. How is that different from, say, General Psychology.
Speaker 1 4:22
So clinical psychology works with individuals who are going through things with trauma, basically, and you counsel and you psychologize those individuals. But industrial psychology is about working with individuals in the workspace, so everything around the workspace, how they fit in, how this is going to make the organization better, how you’re going to find a good fit between themselves and the job. So you’re not looking at those individual aspects, personal aspects. You are looking at the job itself and that person and how they fit into that.
Bill Gasiamis 5:12
I love it. Would there be a behavioral aspect to it as well, how they present in their behaviors, there is suitability for a particular role, how they engage with a team and clients, I imagine, and customers, etc.
Speaker 1 5:31
Spot on Bill. So basically, an aspect of the job that I currently have is psychometrics. So what we do is we assess candidates, or people inside the organization who are already employed and need to be developed further. So we assess them on integrity, personality, cognitive ability, and then we give feedback to them, as well as their line managers, as to the way forward, or whether they have made the cut for selection, etc.
Bill Gasiamis 6:11
I love it. I’m not a psychologist by any means, but we have a couple things in common. We’ve had a stroke each, and I’ve just recently completed a training to deliver psychometric testing for a new product, a psychometric that’s been developed by an amazing friend of mine based In the UK, and it’s about behavioral psychometric testing, and it kind of takes away from the idea of putting people in that group, where some psychometric tests do.
Bill Gasiamis 6:50
Which is, you are this, or you are that, or you are that, and then therefore labeling people and Giving them parameters, I suppose, for which they are supposed to or do behave in. So this particular psychometric we’ll talk about it at the end as well, because it’s probably not relevant to this determines how people behave, and it’s about just educating the person about their particular behavior to make them aware of particular traits that they may not have had.
Bill Gasiamis 7:24
And how those traits affect the environment they work in, either positively or negatively, and then how they interact with people, either whether there’s a positive aspects to it or some negative aspects to it. And what’s cool about it is, I did the test recently and and it’s, you know, that journey that all stroke survivors go on, especially the ones that have been on my podcast, which is to kind of develop an idea of themselves from the stroke as being kind of like the line in the sand.
Bill Gasiamis 7:55
And then I’m going to move forward and change some things improve, some things that psychometric kind of allowed me to look at it and go, Well, that is amazing to know. I now understand why certain interactions go the wrong way, and why and which part of that interaction I might be responsible for, and how I can adjust my behavior so that I behave the way I intend, which is with courage, with compassion, you know, with non judgment and a really open conversation, rather than a conversation that gets people on the wrong side of a conversation.
Bill Gasiamis 8:43
And the reason I mentioned it, I think, is because it’s relevant to how I dealt with my medical professionals and my doctors. And often we find stroke survivors will talk about how medical professionals and their behavior sometimes leaves a lot to be desired. So the more we can learn about ourselves, the better. And I just love that you do, that you’re a psychologist and you have this industrial psychological background, because that is such an amazing tool to help you with stroke recovery, I believe.
Women Stroke and Chanell’s Initial RecoveryChanell Havenga 9:23
Yes. And just like you’ve said, Bill, the psychometric aspect of it is actually all about it’s rooted in bringing self awareness. So once you become aware of those things that might limit you or hold you back, you can make the choice to whether you want to remain as is. Are you content with life as it is and with how things pan out when you behave? Or do you want to make a conscious change? But. Can’t do so we cannot address that which we are not aware of. So we need to become aware first.
Bill Gasiamis 10:07
Guys, if you’re working on hand recovery after stroke, there’s a tool worth knowing about, the Hansen Rehab Glove by Syrebo, available through Banksia tech. It’s safe to use at home, even if your years into recovery with six therapy modes, including stretching, grasping and release and a patented mirror function, it helps retrain your brain and hands together.
Bill Gasiamis 10:32
It’s also available as a low cost assistive tech and Banksia tech ships internationally. Visit Banksiatech.com.au or check out the YouTube description and show notes at recoveryafterstroke.com to learn more. Now, let’s take a breath. You’ve just heard Chanell describe waking up and unable to speak, walk or move, completely unaware of the stroke that had just shattered her life, alone, confused, stripped of identity, and yet she chose to fight.
Bill Gasiamis 11:05
She cried for three days, and then she decided, I’m not going to feel sorry for myself. I’m going to try. If that’s where you are, somewhere between despair and decision, just know you’re not weak for feeling broken. You are strong for showing up. Let’s get back to Chanell as she reclaims her power, rewrites her story and begins again.
Identity and Existential Crisis Post-StrokeBill Gasiamis 11:26
Yeah, I love that. I call them blind spots. I went to counseling as soon as I I think I was maybe 10 days out of hospital, the first time I had a brain hemorrhage, I was at counseling immediately to try and wrap my head around what a happened to me, what this from an existential space? What does this all mean for my life? And then also, what can I do?
Bill Gasiamis 11:50
How do I need to change and adapt so that I can move into a space where I am taking responsibility for the things that I can and then outsourcing the skills and the responsibility for the things that I can’t to people, the professionals who I choose, and so that they can do their bit, which is keep me healthy, remove the reason for the stroke, keep me alive, send me home, so I can become wiser and a better person and better adjusted and all that kind of stuff.
Speaker 1 12:29
Well, you were very brave going 10 days post stroke to a counselor already. I didn’t have that. Yeah, that takes guts, and I commend you for that. Wow.
Bill Gasiamis 12:43
Yeah, it was the only way I could see forward. Christine and I, my wife, we had never dealt with anything like this before, so there’s no, there’s no way to wrap your head around it when you don’t have the experience and also the medical background we Christine and I were not doctors, so we don’t know anything about anything. And now you’re dealing with existential crisis, and it’s just turned up on your lap, and you didn’t have a say in it. And now you have to navigate it with a family, with children, with elderly parents that need looking after, with all sorts of things. And how do you supposed to do it on your own?
Speaker 1 13:25
Exactly as you would know your whole life turns on its head, right? Because life as you know it ceases to exist. It’s it’s basically replaced with brand spanking new everything, new perspectives, new priorities. And I don’t know if this was like it for you, but at first, I refuse to believe that anything had changed. You know that that I really wanted to believe that I was still the same person, so I pushed myself.
Chanell Havenga 14:04
Don’t know if this happened to you. You push yourself, push yourself, and you know to show and to comfort everyone and yourself even that you are still you, that you’re okay, everything’s going to be okay. And it’s like you’re trying to convince yourself and others that look, it’s still me, but I ended up learning the hard way that when you burn the candle at both ends, it’s not worth the burns that follow.
Bill Gasiamis 14:36
Yeah, it’s really tough to deal with all of the aftermath of that so it’s the identity gets impacted immediately. But we’re not used to dealing with instant identity changes. If you if I remember my time as a stroke survivor, by the time I became a podcaster, I think I had been about. So 2012 was the first incident.
Bill Gasiamis 15:02
My podcast started around 2015 somewhere like that, and I was so unwell that I wasn’t putting out too many episodes. I was just trying to squeeze them in when I could. And people would ask me, What do I do? And I would say, I do my work, and I do this and I do that. But I never said, I’m a podcaster. I only ever said sometimes I interview stroke survivors and we put it out.
Bill Gasiamis 15:25
And there has to be an amount of time and certain milestones or goals or achievements that I had ticked off before I could say I’m a podcaster, because before that, I was a painter, I was a husband, I was a dad, and I wasn’t a podcaster, and my identity I didn’t do the first episode, record it, put it live, and go, I’m a podcaster now, like it just doesn’t seem like that’s the right way to describe myself.
Bill Gasiamis 15:55
So identity takes a little bit of time to shift, and for me it took maybe 60 episodes or something before I said, I’m a podcaster. There was a body of there was a body of work. There was lots of interviews. People were interacting with them, they were helping. People were sharing them. And therefore it met the criteria that I had for when I listened to one of my favorite podcasts, and I could then relate to that favorite podcast and go, Okay, I fit all the criteria. So stroke survivors wake up in the morning after after the stroke, there’s so much to do and overcome. Identity takes a big hit and then takes a while to recover.
Speaker 1 16:42
Definitely, definitely. I think, I think that being waking up post stroke was probably and just realizing the weight of of it all and what it all means, was probably the hardest Hello that I’ve ever had to fake. I didn’t want to get to know the new me, because, according to me, I already did, or at least I thought I did, the me I’ve known for 35 years no longer existed.
Chanell Havenga 17:24
I’m sure. You know, there were tiny little fragments of me that still lingered. But have I really accepted this new version of me? And as with you, you know, have I really do. I really resonate with this new version of Chanell, and I think that is about the identity, as you’ve said, Bill our identity, you know, the who I was before, it is so closely tied to what I did, that now that I cannot do what I did at the same pace or intensity.
Chanell Havenga 18:09
I’ve I found, and I still find myself smack, bam, in the middle of an existential crisis. You know, because who the hell am I outside of what I can do? I still feel ambitious and driven. I still want to see the world on Aladdin’s magic carpet. You know, I still have those same dreams. I still want the same things, but now I have to grapple with trading in my stallion steed for Shrek’s donkey if I can put it like that.
Bill Gasiamis 18:52
I love it. Donkey is a lovable character. He does get the job done in a different way.
Speaker 1 19:01
He might go about an angle, but he gets it done, right?
Bill Gasiamis 19:05
And he’s, you know, obnoxious and, you know, he’s in your face, but he gets the job done, you know. And I love that. It’s about identifying how we can still get the job done in this different way and on a path we never chose, but now that we’re on it, we’ve got to make the most of it.
Bill Gasiamis 19:25
I love what you said, who I am, other than what I do, which is such an important question to ask, because we as at the at the party or at the pub or at the nightclub, people don’t ask you about who you are. They ask you what you do, and we identify with what we do. And then when that is not able to be done, we can’t do that anymore. Then who are we exactly? And the dive. It has to be deep.
Speaker 1 20:03
We are human beings. Bill, we are not human doings. Yeah. So you know, when people ask you, what do you? You know who you are and or you, you automatically almost jump into what you do and that doesn’t define you. And it took me probably two and a half years post stroke to realize that and to come to the conclusion of I am not what I do, if all of this is stripped away as it was, what is left of Chanell, you know, what? What meaningful contribution can I still offer the world?
Chanell Havenga 20:51
Because I wish, I really wish, sometimes I was just a lazy person content to just veg around and, you know, not worry about anything. Oh my gosh, my life would be so much easier. But I’m not. I want to always improve and be better, and then then my past version, or who I was yesterday. So I’m, always setting little goals for myself, but everything now is it’s adjusted. It looks different. And you can fight it all you want, but eventually you’ve got to come to terms with this is how it is now. And I do realize, yes, Bill, you know, it is what it is, but I’ve also come to realize that it will become what we make of it.
Bill Gasiamis 21:51
it. I love that. I love that so much. And this is what 13 years post stroke, gives you the opportunity to see what became of it, and for me, it was a podcast, a book, a massive community conversation with stroke survivors all around the world that’s incredible, right? Coaching and guiding and information, and therefore the bigger picture, which I didn’t know, which emerged from what action I took, from what behavior I took, or I attended to what behaviors I altered.
Bill Gasiamis 22:34
Well, then that’s what’s possible. And when I say that, that’s what’s possible, I Shrek. Shrek survivors will come onto the podcast. Before we get recording, they’ll say, I’m a little bit nervous about meeting you, and it’s, you know, this full on, far out thing. And it’s like, gosh, you don’t know who I am. Like, I’m just the guy who used to paint people’s houses all the time, every day, and nothing else in my life, and was cranky and angry.
Bill Gasiamis 23:00
I was just a normal guy who I just decided that it was interesting and exciting to engage with people in this way, not just at the painting of their home stage. And because I got more out of it, I did more of it, and as I did more of it, I got more out of it. And the cycle continued, and all of a sudden these things have appeared.
Bill Gasiamis 23:24
And what I did, more than anything, was I didn’t concede to my head telling me you shouldn’t do this, or the fear of, what if I do this, and somebody says we don’t like your book or your podcast is no good or and I thought, Well, I’m not going to listen to that voice anymore, which is a voice that used to run my life, and it’s probably why I became a painter, because I didn’t do the hard, the hard tasks early on that I needed to do to get me where I wanted to be.
Bill Gasiamis 24:01
That was the easy way out, and it was still a great it’s still a great way to raise a family, to create wealth, to pay your mortgage, to have a car, to go on a holiday. It does all of that, but it’s not it’s not personally fulfilling. When I paint somebody’s wall, and I walk away and they say, Thanks for painting my wall. This is me, this is purpose.
Chanell Havenga 24:29
Yes, absolutely. Um, Bill, I don’t know many people who get to start completely over. You know, like us post stroke, and yes, we may not fully recognize our reflection when we look in the mirror, but we do get to reinvent ourselves, and we do get to redesign our lives with our. Health and our health as top priority, because, as you’ve as you’ve mentioned, you know, things will probably never be the same again. Go never, ever go exactly back to before.
Chanell Havenga 25:15
But, and we don’t know this at the time, but the thing is, we will be okay. It’s just, it’s just kind of sad how we spend our lives at jobs willing to replace us in a heartbeat, right? And we bully our dreams into nothingness. But where in all of this is our own voice, where, if ever, do we stop to consider ourselves so that is so amazing that you were actually able to hush those in a you know, those inner critics that all of us have to say, You know what?
Chanell Havenga 26:06
I’m going to feel the fear and do it anyway and just look, just look at all of this incredible mess. I know that’s not a word, but it’s all of this incredibleness that you have created and that you share with like minded people. It really makes a massive difference.
Bill Gasiamis 26:31
Incredible-ing it is ongoing and continue, and continues to be, right? And it’s just simply because you know, I had, I think, you know what happened to me? I think I got lucky in the stroke, in that my mind switched off. It stopped working, that part of me, that scared guy who always listened to his negative inner voice that just switched off. I couldn’t actually access it for a while.
Chanell Havenga 27:09
Okay, okay, that is wow.
Women Stroke – Advocating for Oneself and Overcoming Obstacles
Bill Gasiamis 27:14
And then that opened the door, a door that wouldn’t have opened before, because I wouldn’t have even contemplated opening that door, because my mind would have said, No, don’t do that. We don’t do that. That’s not who you are. That’s not where you weirdos go there, or people that you don’t associate with go there, or people who are better than you go there. And that all went away. So because I couldn’t access that part of my brain, all I saw was opportunities.
Bill Gasiamis 27:40
Oh, my God, here’s another opportunity. And what I had was an amazing friend of mine who wrote the forward in my book, Michael Wilkinson. And he’s just a seed setter. He just plants seeds all day, every time you meet him, and he just plants seeds. And he was the one that planted the idea that if I’m going to help people.
Bill Gasiamis 28:01
I should do it beyond the suburb that I live in. And he said, you should do it on the internet. Online. There’s, you know, this thing called the internet. And I just looked at him and thought, Well, why would I do that? I can just go down the road and meet some people. And he says, Yeah, but how many people are you going to meet there? I said, I don’t know. There might be one or two or three. He goes, but this could get to 1000s of people, and then he stopped, and then he stopped speaking, and then he just let it marinate.
Chanell Havenga 28:31
Oh, that’s fantastic.I think we all need friends like that in our lives. Really, we do.
Bill Gasiamis 28:40
Yeah. And I lucked out. So what I’m hoping that people are getting out of this is that I am just an ordinary person. Forget about who the roles I play and the position I hold and the things that I’ve done, I am still an ordinary person, and lots of ordinary people have written books, lots of ordinary people have done amazing things, because it’s the ordinary people that we put on a pedestal and call extra ordinary, but they’re just doing things that we haven’t done, therefore we consider them better or more capable or somehow gifted to be able to do that. But it’s not about that. It they were just ordinary people, and they still are.
Speaker 1 29:35
They were brave enough to do the things we only dreamed of.
Bill Gasiamis 29:40
Perhaps, yeah, yeah, perhaps on the day of the stroke, what happened? How did you end up having a stroke?
Speaker 1 29:51
Okay, so little bit of context during my 20s, throughout my 20s. Yes, I was plagued with headaches five to seven times a week, which seriously imposed on the quality of my life. I can’t imagine that it was good for my kidneys as well having to process and break down all of the pain tablets that I was drinking at the rate that the headaches were occurring after I’ve completed my Masters, I then decided, You know what, let’s give this the much needed attention it deserves.
Chanell Havenga 30:36
So I booked an appointment and I did a few trial runs on different types of medications to see if that would work. First, absolutely no impact. And then I was booked for a 15 minute infiltration medical procedure. So this is where they would inject cortisone into the back of your neck. And the reason why they decided to do this was because they they thought that the headaches were triggered or stemmed from muscle spasms, so the cortisone would then relax the muscles.
Chanell Havenga 31:30
I did not wake up after those 15 minutes, though, and when I remained unresponsive. Hours later, and I was still in hospital, in the bed, remained unresponsive. They did. They They then made the call to send me for an MRI, and it was on the scans of the MRI that the severe ischemic stroke that I had was was discovered because my my brain, you know, when you look at the scan, the whole brain was white, so it had showed that everything had died.
Chanell Havenga 32:15
And basically the prognosis that was shared with my mom and my partner was that I was unlikely to make it through the night, and if I did, I would probably be declared brain dead. So yes, imagine being a mother and a husband and you you’re hearing the news. I can’t even Yes, I can’t even imagine that. So that is how the struggle occurred, yeah.
Bill Gasiamis 32:51
So you were going in to solve one problem, and you came out with a whole bunch of other problems.
Speaker 1 32:58
With multiple Yes.
Bill Gasiamis 33:05
So okay. Now what’s cool is that, with regards to the scan you just described, you’re sitting in front of me, and we’re having a conversation about a pot, about a a stroke, which means that, okay, so, like, the scan wasn’t as bad as it seemed to be, or it was.
Speaker 1 33:29
It was really bad. I was in a coma. I was wearing diapers at age 35 and that’s not a pretty picture. I couldn’t speak, swallow, sit, stand, walk. I had to relearn all of those things. There’s quite a few deficits that I’ve kept over from the stroke, but I believe that it really is a miracle that I am sitting here talking with you this morning or evening, and I believe that this all would not have been possible without the hand of God interfering and just saving me, and also without my support system, my incredible support system that I’m blessed with, I think things would have taken a far worse turn.
Bill Gasiamis 34:46
How many years ago was that?
Speaker 1 34:51
In August this year? It would have been it would be four years. Yes.
Bill Gasiamis 34:55
Okay, that’s amazing. Do you recall having any first thoughts? Do you recall waking up and going, what is going on? What was that like?
Speaker 1 35:09
Yes, it was. It was quite hilarious. I remember waking up and thinking to myself, I was feeling very groggy and out of it, and I remember thinking, wow. You know, no one told me that it would be like this. I never imagined the downtime for a 15 minute procedure would feel like this, and there was just nurses scurrying about, and no one made eye contact with me. I don’t know if if you also experience this, but it’s like you’re invisible the ICU, and it was also during one of the more serious waves of COVID.
Chanell Havenga 36:01
So, you know, everyone was so busy saving people, and you literally just become a number. And I think it’s also a defense mechanism on the on the part of the nurses, because they cannot really care for anyone or get attached, because so many people were dying during that time. So basically, I’m lying there. I realized, oh my gosh, I can’t speak.
Chanell Havenga 36:33
And why am I seeing double? My vision was just double. My eyes were completely squinted. And no one was telling me what was going on. And also my parents, my mom, anyone I knew, they were not able to visit me because it was COVID, and my mom works at the hospital, so she was able, thank goodness, to pull some strings and get to see me for five minutes every day.
Chanell Havenga 37:11
So that was at least, thank goodness something. But yes, only after about a few days, my mom told me, Chanel, you’ve had a stroke, and I remember feeling what like I just was in complete disbelief. I couldn’t I couldn’t believe it was just horrific.
Bill Gasiamis 37:37
It’s beyond acceptance. It’s like disbelief.
Speaker 1 37:41
Yes, absolutely, absolutely, yeah.
Bill Gasiamis 37:45
And, wow. I mean, so then what happened? How do you go through the next period of time? So you’ve discovered you’ve had a stroke. Your mum told you that, and then you’re in recovery, and we’re trying to get you back into the living world. How did that go? What was that like?
Speaker 1 38:11
So first, there was a turning point for me in rehab. So I was, I was admitted to high care for two weeks, and then I was admitted to a rehab hospital for six weeks, where I then relearned how to do everything. And I think that’s when reality finally dawned on me. You know, I wasn’t just going to get up and stroll out of rehab. This dead weight is basically what I am right now. So I cried for three days straight. Bill. I was completely inconsolable.
Chanell Havenga 38:57
No one could comfort me. I felt like a really big baby for crying. And also in rehab, they had this rule that I had to I had to choose, and you would know, you’re not really able to problem solve at that stage, I had to choose who would come to see me, my partner or my mom, because they were only allowed to see me once a week during COVID, and I threw the biggest tantrum ever and the most passive aggressive manner I could muster.
Chanell Havenga 39:46
And I threw a bit of rank, and I told them in a very groggy, throaty voice that, listen here, I am a industrial psychologist, and I could tell you, right now that it is in the best interest of the patient to have their family with them and support system. How do you expect people to recover anyway? That eventually my tantrum got escalated and escalated to, I don’t know who else, but it reached the right ears, and thankfully, my family was able to see me every day for one hour.
Chanell Havenga 40:30
So yes, I’m very thankful for that. But in those three days that I was just crying, I then realized that occasional you can go about this and make your life utter how and misery for the next six weeks, or you can just try To make the best of a very bad situation. So I refused to feel sorry for myself, and I couldn’t breathe because my nose was so blocked and red.
Chanell Havenga 41:11
You know, it wasn’t Christmas, but I was Rudolph, and with three tiny letters having a massive impact, I simply decided to try, wow, and that is where things took off. And I changed the narrative in my head, and I decided to fight back, because you cannot be released from rehab, unless you’ve met certain goals. And the goals given to me was I needed to go to the bathroom by myself.
Chanell Havenga 41:49
I needed to be able to shower myself, and I had to walk, I think it was 90 meters. And for me, those 90 meters felt like an absolute sprint at the time. However, I think that I was more like a snail, but yes, I put my head down and I focused on that, and I had a new purpose.
Bill Gasiamis 42:17
Oh, wow, I love that you did that so early on, and that you were able to advocate for yourself and be able to pull rank like that. You did that. Yes, yeah, every once in a while you have to be able to do that. Most of the time you end up part of my French when you when people pull rank, they end up looking like a dick, right? But that was the most appropriate time to do it.
Bill Gasiamis 42:42
I love it, and to have the knowledge that you had, which is really speaks then to the nurses. And I imagine one of those nurses decided, You know what? That makes complete sense. I’m going to advocate for this person. And do you know who that was? Was it somebody that that you remember, who advocated for you and did that.
Speaker 1 43:05
I have no idea. This is one of the lovely benefits of the stroke, is memory loss. So I can’t remember things before the stroke and my past, and I can’t remember certain things that happened during the stroke, it would just be blank in my mind. When I’m tired. I can’t even remember what I had for breakfast the same day. So yeah, unfortunately, not but I do remember there being a nurse, and she was a complete Angel, because she was doing a job out of compassion. You know, when you when you get people who just work for a salary, that was not her. She was different, and I was so grateful to have had her by my side.
Bill Gasiamis 44:07
Yeah, I remember there was nurses in the rehab hospital I was at, and then there was also occupational therapists and physical therapists, and the nurses were had those. You know how you said earlier that they wouldn’t even make contact, eye contact with you, etc. So, so you can imagine all the various the different spectrum of people who attend a physical rehabilitation hospital, right? There’s such a spectrum.
Bill Gasiamis 44:39
And one of the ladies, there was probably, who knows what she experienced, but she was in a diaper, and she was the lady opposite me, so when, when she had to move her bowels, everybody on the floor knew about it. But that wasn’t the worst part. That. That’s That’s probably terrible for her. It wasn’t the worst part for me.
Bill Gasiamis 45:03
The worst part for me was that they relocated the bin that held those soiled diapers in the hallway outside my door, and I was meant to eat dinner and lunch in that room, oh no, and it would smell the entire day. And I had, I had to have a number of conversations with the people who were caring for that lady, the nurses, and then escalate that to, you know, the head nurse or the manager.
Bill Gasiamis 45:39
I’m not sure who it was, but I’m in there now trying to recover from all the stuff that I got. To recover from my left side deficits. I can’t walk with my left hand properly, etc, and it’s very early days in my recovery. I’ve got a fresh scar on my head.
Bill Gasiamis 45:56
And I thought that all I had to do was say, Would it be possible to move the bins away from my from the hallway, just take them elsewhere, down the outside, down the hall or something where it’s not in the way of anybody, not next door, just out of the area. And they said no. And then I said, Well, but, but it’s uncomfortable. It’s unpleasant.
Bill Gasiamis 46:24
And then they played the but that lady is really unwell. I’m not complaining about the lady and the condition that she’s in and what she has to do and what she’s going through. What I’m all I’m asking is that bin just, can please be relocated 100 meters that way. Just get it out of the doorway. I understand your job and understand everything that you’re doing.
Bill Gasiamis 46:47
I don’t have an issue with that, but I am meant to eat here. That fell on deaf ears for a number of days, and I remember after about the third day or something like that, lunch was delivered. I wasn’t. So I would go to do my exercises, my rehab, and then I’d come back into the room to rest, have lunch, and then more rehab, and then that cycle would repeat, lunch.
Bill Gasiamis 47:12
Lunch came, and I put myself in my wheelchair, I rolled myself to the front desk, and I invited the nurses to come to my room with me, to have lunch with me. And they looked at me and they said, why? I said, just, just come. Just bring your lunch and just come and have lunch with me. You know you’ll just say you can experience what I experience, exactly.
Bill Gasiamis 47:39
And then they were like, What are you experiencing? I’ve been complaining about it for three days, and I understand the difficulty of the nature of the situation and the job. I totally get that, but that is not the right place to store that kind of waste. I’m sure there are rules around that, and the rules are not to store that waste in any public space where people can access it, infections, all that kind of stuff, I’m sure.
Bill Gasiamis 48:06
So, yeah, eventually I won that little battle, and they moved it down the road and the the and then there was one less drama for everyone to have to deal with. But that thing does happen, and I, I was like, You, I was pulling rank because I did the victim. I’m the victim here, and you have to make my life comfortable here to help me heal. My recovery goes well, and then I get out of here. That’s the whole reason why I’m here.
Speaker 1 48:40
Yes, it’s but being, being the victim, being in such a position, almost by default, we are overlooked, you know? So it’s like your voice doesn’t really matter. And the first thing I thought of, and then you said, You’ve done it was, I would, in that situation, I would, I think what you did was genius. Invite them, you know, come just, just experience it.
Chanell Havenga 49:20
Because people who are not in your shoes, yeah, it’s so difficult for them to really walk in your shoes and experience what you’re experiencing. I would have probably said, Would you like to go have your lunch next to the bin? Then you you get to see what, what, what it is all about. But I like the strategy that you employed.
Chanell Havenga 49:45
I think that was far more effective at getting them to play along. But isn’t that, what is the word? Isn’t that almost kind. Characteristic of of being a stroke survivor is that no one really gets it unless you’ve lived it. No one really knows what you’re going through. You can explain it until you’re blue in your face, but it’s it’s not the same for someone who has not survived the stroke.
Bill Gasiamis 50:26
Yeah, it is. And also it’s a blessing that I don’t know what’s going on, and the only thing I hope is that people who have going through a stroke have enough presence. Of their mind to be able to advocate for themselves, even in small ways, if it’s just for something minor or major that they can do that that’s really if you can, if they have to lose everything else, but not that thing, that that would be amazing.
Bill Gasiamis 51:01
When I was first diagnosed, I was in the hospital, and the doctors would come to the end of my bed in a team talk about me and then leave, yes, never talk to me. And I had a friend of mine who was at another hospital as a radiographer, and I said to him, you need to get me out of here. These people are not including me in the conversation.
Bill Gasiamis 51:22
I can’t be passive in this conversation. You need to find, yeah, you need to find me a a team of doctors that will listen. And of course, he found me the most amazing team. And basically did the deal before I even had to do anything. And then when I went there, all I did was meet the new team, the new doctor, and she’s an amazing lady, and now she’s the head of neuro neurosurgery in the Royal Melbourne Hospital, Kate professor, Kate Drummond.
Bill Gasiamis 51:53
And if it wasn’t, if it wasn’t for that, you know, I didn’t need the addition. You don’t need the additional aggravation in in that condition. When you’re in that condition, you need things to go if, if they’ve never gone smoothly for you up until that day, you need them to go smoothly from here on and and I’m just glad that, you know, we get opportunity to talk about this and raise awareness for people so that they can feel comfortable to advocate for themselves every step of the way.
Speaker 1 52:29
Absolutely. Bill, you also asked me, How is life now? You know, how was it during, during the stroke and the recovery? And I’m, I don’t want to assume things, but I’m, I’m probably gaging that you went through similar motions and one of, one of those things that rears its very ugly head is guilt.
Chanell Havenga 53:05
So yes, you know it’s like there’s a fine balance between advocating for yourself, standing up for yourself, and then feeling that guilt, because nothing can prepare you for the guilt. You know no one tells you that you are going to cry buckets full of crushing pressure. You know the guilt of being too slow, the guilt of holding other people back, the guilt of being a burden.
Chanel’s Journey to Publication and Advocacy
Chanell Havenga 53:36
You have to kind of juggle that, but then you also have to juggle that with having grace with yourself, right, and being kind to yourself. And I would, when told this news, I would usually roll my eyes, because what is there to be kind about? I just want to get back to normal or the normal that I knew, but it’s tough to it’s tough to say these words when the recipient is you.
Chanell Havenga 54:11
You know, we are our own best critics. But I, I believe that if if I had only known the sooner, you know, I might have applied it sooner. And I believe you need to start with you. You need to forgive you. You know, I’m sorry that I don’t feel like adulting today. I’m sorry for being mean to me, you know, I’m sorry. I’m so tired all the time, and I’m sorry that I feel like I’ve stopped being a person and started becoming a problem, you know.
Chanell Havenga 54:56
So it’s such a delicate little balance and dance between. In guilt and being mean to yourself and not having grace with yourself, that’s what I experienced, and then the deficits that I kept over from the stroke the biggest one bill would be neurofatigue, because it it infiltrates into every little aspect of your life, literally, it impacts on every single thing I now also have extreme auditory sensitivity, so I have noise canceling headphones at work.
Chanell Havenga 55:50
I have little I actually heard you interview another podcast person, a stroke survivor, and you were talking about little earplugs, and I went and googled them, and I ordered them immediately. And I’m so thankful, because they work like a dream.
Chanell Havenga 56:14
It just takes the edge off, you know, just the noise. And yes, so I have that. I have my noise canceling headphones. I wear permanent glasses with special prism lenses to help with my balance. So no Unfortunately, I cannot do belly dance at the same level that I used to, because I cannot turn my head and we, you know, there would be a lot of head spins.
Chanell Havenga 56:46
I can’t turn around at the same pace, because then I’d look like a little baby elephant. You know, not having balance, I have difficulty regulating my body temperature on the left side of my body, so weird, my foot and my leg is always cold, always memory loss, as You know, sleep apnea, because apparently your throat muscles become lazy.
Chanell Havenga 57:24
They relax when you’ve had a stroke, so it’s like a straw that you bend and the air can’t flow through. So sleep apnea, basically no oxygen to the brain. Then also, I’m only able to work until 2pm in the afternoon because my productivity and accuracy nose dives after after that time, you can’t get anything out of me, which is so impressive that you are having this podcast at that time of day, that that you are having it, um, because I was working out the time difference from South African Australian like, Oh my gosh. How are you even still awake?
Bill Gasiamis 58:17
I’ll tell you, it’s early in the morning here, so you may have worked that out incorrectly. So it’s just shifted over, it’s just shifted over to mid day where it’s 1:30pm so that’s okay, however I everything you described. I’ve been through exactly all those things, stopping work at a given time. That was not my choice.
Bill Gasiamis 58:47
Was a common thing. My left side deficits are the same cold, much colder than my right side. I even sweat less on my left side compared to my right side. Wow. So that was weird one day to go and wipe my forehead of sweat and to realize that there was no sweat on this side of my forehead, just on this side. That was so bizarre.
Speaker 1 59:15
Do you also experience aphasia and slurring of your speech when you get tired.
Bill Gasiamis 59:25
I don’t, but my wife will sometimes, I’ll start a sentence, and she’ll sometimes wait for the answer, and she’ll be going spit it out, you know. And I’ll be like, don’t rush me, you know, be nice, don’t tell me to spit it out. Yeah, and it’s sometimes the cogs turn a little slower, but it’s not a big challenge. People don’t really notice it if I do it in the right context, if I’m on stage and doing it, people think I’m just a deep thinker.
Chanell Havenga 59:56
Yes, it’s intentional.
Bill Gasiamis 59:59
Yeah. Yeah, so I just play. I play the game.
Speaker 1 1:00:05
So I literally look like a inebriated, drunk person when I get tired, because my speech starts slurring. I don’t talk any sense. I actually start bumping into things.
Bill Gasiamis 1:00:25
Especially my left side. If I’m walking next to somebody, I tend to run into them all the time. I’m not sure why. They just become magnetic.
Chanell Havenga 1:00:34
Yeah, exactly. I like that. They become magnetic.
Bill Gasiamis 1:00:40
So it’s their fault, not mine. And then what has happened is, they have all got better. The cognitive fatigue has improved. The ability to focus on a screen for longer has improved. My productivity has improved, but I’ve but I’ve made a lot of changes. I don’t smoke, I don’t drink, I don’t eat barely any carbs, so I don’t do the things that are a high load on the brain and its energy levels.
Bill Gasiamis 1:01:08
And I try to make sure that I’m supplementing with things that I need to supplement. I’ve got a couple of other issues. I have a thyroid issue. Just a few days ago, I was diagnosed with high blood pressure, so there’s a lot of things that you can do to support the brain to heal further and become more efficient, but you just have to do it regularly now, but you you committed to your recovery in therapy. So tell me about that. What does that look like four years later, this commitment to recovering, and what have you changed? Or what are you doing, and what have you stopped doing?
Chanell Havenga 1:01:49
Wow, I have really started living like I don’t want to die almost again. I’ve prioritized my health because I figured, you know, you’ve been given a second chance at life, and I have scaled down significantly bill with most things you know, at first you you just push yourself and you want to convince yourself that you still can and it’s still you and you haven’t lost yourself or your identity.
Chanell Havenga 1:02:35
And then you burn out multiple times until you realize, okay, this is just a never ending loop. It’s not going to end unless you end it. So I’ve decided to really stop literally and smile the roses, to pace myself. You know, fatigue isn’t it isn’t only triggered physically so too much stimulation and mental those things are hot on its heels.
Chanell Havenga 1:03:14
Also, I’ve realized that the brain cannot cope when it has too many tabs open, too many distractions and things happening, stress, especially also it takes the brain away from recovery, because now it’s busy with coping with that stress. So yes, i and i also something that really helped me, Bill is the occupational therapy homework that I got. It has helped me immensely, and it was journaling, and that is how I I wrote and published a book called My Stroke of Luck.
Bill Gasiamis 1:04:04
Yes, you have a copy of it there?
Speaker 1 1:04:20
This is my book, and it it has really helped me bill, because I was able to put to paper what was going on. And the reason you know what sparked this is I was journaling just during my recovery early days, though, and I happened to read an entry to my partner, and he said to me, You know what? You should really do something with this, because it’s not like a pity party.
Chanell Havenga 1:04:56
You write humorously, but you don’t. You know, an Afrikaans, we have a saying that we say, you get drawing in a dukies Omni so basically, I’m not Willy Wonka. I don’t sugarcoat things, so I tell it as it is, but I do so in a in a humorous way. And that’s when I decided to really go for it and write this book I also, which also helps me is I volunteer at a stroke rehabilitation hospital.
Chanell Havenga 1:05:44
And the whole thing about the book is I want to raise and apply funds to assist stroke survivors in any way my capacity allows, because I believe that too many people are suffering silence, and too few are aware of this, and I believe it can be changed. So I felt like my book is deemed for a cause. It’s it’s, my book is for a cause deemed worthy of trying, and this is what I want to achieve.
Chanell Havenga 1:06:30
I also rose Stroke Awareness on radio, and I shared my story and how book readings at hospitals. So in terms of what I’m doing now is I really want to make a difference in Stroke Awareness, and in that regard, I think Bill, you are my idol and my hero, because you have done what I think has brought such a massive difference to so many people’s lives. And you know, that is the goal that I would love to to reach as well.
Bill Gasiamis 1:07:26
I love it. Yeah, so one of the the last chapter of my book, is stumbling into purpose, and it starts off. And the reason I it’s called that, is because I didn’t set out to find my purpose and meaning. It’s not what I did, but I volunteered. I volunteered in 2013, a year after my first and second bleed, and I still wasn’t well.
Bill Gasiamis 1:07:58
You know, had another bleed to come, and I had brain surgery to come. I still wasn’t well, and I volunteered to the Stroke Foundation, and I went to the community, and I spoke about stroke and I raised awareness. Recently, I became the voice of a Stroke campaign here in Australia. Previously, I’ve lent my face to the I don’t know why they chose my face, but they chose my face, and they used it on their pamphlets and on some of their social media.
Bill Gasiamis 1:08:25
And what that was, was the beginning of the podcast, because the podcast was a volunteer kind of role. It was free. You didn’t have to pay for it or anything like that. In fact, it cost me money to put out. Yeah, and what happened was, it was during the podcast interview, I think around episode 40, when I said to another stroke survivor, I think I’ve found my purpose, and that came to me. It wasn’t what I set out to do, but it came from helping others.
Bill Gasiamis 1:08:59
And if you want your life to improve dramatically, even though you can’t walk move, your identity has changed, and all those things happen, even all of that stuff has happened. If you want your chat, your life to improve dramatically, help somebody else, beautiful, that’s it, and that helping somebody else can start simply by sharing a book, a podcast, a story, by reaching out to responding to their Facebook post and saying, I hear you, I see you, I understand you.
Bill Gasiamis 1:09:37
You don’t have to attend a particular location or anything like that. You just have to make it about I’m going to improve the life of the lives of other people. And your husband, he planted the seed. Your partner planted the seed, like my friend Michael, and that was all that it needed. And wouldn’t you believe it like that little seed sprouted and it became this thing, and that is.
Bill Gasiamis 1:09:59
So that’s the gift of of stroke. Like I know people who are early on, perhaps, and doing it a lot tougher than we did, might not see it right now, right yet, but if you can find the way to ask yourself, what is good about this? Well, let me tell you, if you don’t know anything, that’s good about anything is that, if you survived a stroke in 2025 that’s what’s good about it, because 50 years ago, that stroke that you experienced, that you survived, may not have been a survivable one. And then go from there.
Speaker 1 1:10:45
I remember being in rehab and just wishing that, you know, I had some sort of guidance, something to just guide me and to tell me how things might be, what I might expect, you know, what is the forecast, you know, for the future? Is it normal for me to feel like this is Is there something wrong with me, other than, you know, not being able to walk and and so forth.
Chanell Havenga 1:11:23
And that would that’s another reason why I wrote my book, is because it, it was essentially the diary I had wished I had, and I wanted, I wanted to have other stroke survivors feel less alone in in all of, all of everything that’s just going on in their lives right now, because it’s no one tells you, it’s a mental struggle as well. You know, you you think, Okay, let me.
Chanell Havenga 1:11:58
Let me just get through these physical deficits, let me just do physio and biokinetics and and all of those things and tick, tick, tick it off my list. But no one tells you that when, when you focus on that actually on the back burner. You really need to look at your emotions. You cannot defer that. It’s it’s creeping up there, and it’s going to come and you’re going to have to deal with that.
Chanell Havenga 1:12:36
But that was the that was the furthest thing from my mind. Um, so it’s not all sunshine and roses, you know, sometimes it’s just thorns, and you have to, you have to be prepared for that, and that is why I wanted to put my book out there. Um, because it’s literally diary entries of me during my recovery. And at the end, I also thought, you know, this might actually not be a bad idea, because my attention span in the beginning was zero.
Chanell Havenga 1:13:22
I wasn’t able to read more than one or two pages at a time, and the diary entries that I have is literally a page, you know. So. And I also want to actually start a an audio book for stroke survivors, because of of my book, because when I was in hospital, I was also going blind, and stroke survivors might find it difficult to read um, but Then at least they could listen.
Bill Gasiamis 1:14:02
That’s some of the feedback I’ve had. And I tell you what guys the hardest thing to do for me is sit down and read a script of a book and make it sound something worth listening to. It is so difficult to to gain the skill to read something and then make it sound conversational and flow. I can have a conversation forever, but reading the book is really hard, and I’ve had it requested, but I can’t seem to get it out.
Emotional and Mental Recovery Post-Stroke
Bill Gasiamis 1:14:37
Now. I will one day, but I can’t at the moment, but I would encourage you, if you can, to find, find a way to get that done, because people are missing out, because I haven’t got a an audio version, but they have the podcast, and pretty much everything that the book shares, the podcast pretty much does share. We talk about all those topics all the time. I’m thankful for that.
Bill Gasiamis 1:15:03
I wanted to as we start to wrap up, but before we do, I want to ask you a little bit about psychology. Now, you mentioned that you cannot go about your recovery with the physical only. There’s, I have like a triangle of stroke recovery, physical, emotional, and I’m going to call it mental. Now, emotional is the psychology part, and I’ll tell you why.
Bill Gasiamis 1:15:31
And mental is the the cognitive behavioral therapy part, and physical is the obvious physical part. One of the things that I think is occurring in the field of psychology. The counseling side of psychology is the word is associated with the head and the actual word, the etymology of the word is, psychology is, see here is Psych and lawyer is logic, the logos and I feel like the counselors and the psychologists that I’ve been to amazing as they are, and they’re both women, by the way, the ones that I had chosen.
Bill Gasiamis 1:16:11
They do the emotional part really, really well. But I feel there’s a little bit of a disconnect between the actual meaning of the word psychology and how it’s applied, because I feel like it’s applied only and the majority of the time consciously to the head and not enough of the emotional, heart based psych type of stuff is occurring. Now. Is that just me? Or would you agree with that statement? Or do you think it’s not like that?
Speaker 1 1:16:48
I do hear what you’re saying. Bill, I haven’t had that experience. I also had to see psychologists and counselors, and it would almost seem the inverse of what you’re saying, so they focus mostly on emotion and what you’re going through. So it was almost never for me about cognitive things, unless I wanted to go there okay and discuss those things, but then they would always turn it back to Okay. But you know, at the risk of sounding like a cliche, how does that make you feel?
Chanell Havenga 1:17:42
You know, so it would always, it would always go back to the emotion and what it stirs inside of you. And you know, we, we often try and rationalize things and think about things, and this is why it’s not cognitive. So whenever you say, I think, I think I feel like this and this, no, no, no, no, don’t think. Just feel. You know what you feel. So, um, yes, I I do hear what you’re saying, but I myself haven’t had that experience. I wish maybe a little bit more of thinking and less of feeling, because I think I’m tired of talking about my feelings by now, but yes.
Bill Gasiamis 1:18:44
I love what you just said. I think I’m tired about talking about my feelings, the feelings. Though, talking about your feelings brings much more relief than thinking that I’m tired about talking the feelings. So there is a thing as cognitive behavioral therapy, but there isn’t a thing as emotional behavioral therapy. Or is there?
Chanell Havenga 1:19:02
Not, that I know of emotional behavioral therapy would be trauma counseling, um, sessions, you know, if you, if you want to box it like that, it’s, it would, it would be looking at specific traumas and all that that entails.
Bill Gasiamis 1:19:20
Yeah, but if you think about, if we do think about behavioral, cognitive behavioral therapy, it is a field that teaches you how your thinking may be flawed and how you might be able to adjust it so that it is less flawed, and it helps you meet the outcomes of your life, whatever they are, or the outcome of the session, the outcome of the interaction with the human being that you’re having trouble with, whatever it is, right?
Bill Gasiamis 1:19:47
Well, emotional behavioral therapy would be something similar. You would attend to the behavior of your to the outcome of your emotional behavior, and you could then attend to how to adjust it. Alter it, comprehend it in a way which would support a better relationship, a better job environment, a better a better experience with yourself, a better way to deal with your stroke experience and not that, how you’re dealing with it is not okay, or it’s not right.
Bill Gasiamis 1:20:20
It is perfectly okay let me tell you that right now, if that’s what you’re going through, but it’s always about kind of saying, okay, is this serving me or not? My thinking wasn’t serving me. That’s why I went to counseling, and what it was doing to me. It was causing emotional turmoil, and my emotions were the were the symptom, and people would see my emotions, but it was the thinking that was triggering the incorrect path to that emotion.
Bill Gasiamis 1:20:50
And then once I altered my thinking and realized what I’m doing is I’m because my biggest challenge when I was in my mid 20s was that all my problems, where everybody else is doing and making had problems with my parents, it was them. I had problems with my brother, it was him. I had problems with my partner. It was her.
Bill Gasiamis 1:21:10
And then what happened was I started to learn that my thinking might have been out of whack, and as a result, all my emotional experiences, the bad ones lessen than the good ones heightened. I got less emotional about stuff, and therefore my outbursts were less ridiculous and and there was no unnecessary ones. And then I started to be able to connect with people a little better and not judge them for their lack.
Chanell Havenga 1:21:42
Yes, yes. I think that is why cognitive behavioral therapy people is is so emphasized, because our thoughts inform our behaviors, right? So you have this stimulus and response and something happens and you react, you respond immediately.
Chanell Havenga 1:22:05
But if you think about intentionally, think about adding a filter, a pause in between, you’re going to have your stimulus and you’re going to change your course of action by just responding, you’re going to just add a brief pause there and a filter through which you can see, okay, this is not going to help me. It’s not going to be productive in any way. Let me choose a different course of action. And I think that is why the focus is so much on the cognitive behavioral therapy, because our thoughts literally shape how we act.
Bill Gasiamis 1:22:52
I love that, it’s a question I’ve been keen to ask for a long time because, because it’s kind of because I just thought I think about things a little bit more deeply these days. I was just trying to get my head around it and understand, at the same time why there is a bit of a neglect of the emotional recovery in stroke, why people seem to omit it.
Bill Gasiamis 1:23:19
And even if you’re going to omit it during physical therapy or even counseling at the moment, at the time, there should be just somebody saying, by the way, once we’ve done dealing with that, let’s also there’s this other area we need to consider. So at some point when that comes up, just know that maybe you haven’t dealt with it yet, or we need to deal with it, or wanted to discuss it.
Adjusting to a New Normal and Finding Purpose
Chanell Havenga 1:23:45
Exactly. I have always been into fantasy books, Harry Potter and and so forth, and I remember being in rehab and thinking about Alice in Wonderland, and she once said that she couldn’t return to yesterday because she was a different person back then, and it really resonated with me. Had such a big impact, because I try to convince myself that I’m okay and that things will go back to exactly the way they were before.
Chanell Havenga 1:24:33
You know you you kind of lie to yourself because you’re denying what has happened. But the truth is, Bill, there is pre stroke and there is post stroke, and we are never going back to before, so maybe Alice was onto something. After all, you know, I still love fantasy. Books, but I also have more of an affinity for practical documentaries, you know, things like that. So in that sense, my my tastes have changed in terms of literature.
Reflecting on Personal Growth and ChangeBill Gasiamis 1:25:21
Are you thinking about practical application of the things that you’re learning, how they are applicable in life, or just as a general concept, practical?
Chanell Havenga 1:25:33
I think both Yes, probably the former more.
Bill Gasiamis 1:25:39
Are you finding yourself like seeking, requiring, having more of a need for that type of information now?
Chanell Havenga 1:25:53
Yes, yes. I think it depends on the mindset that I’m in, because sometimes you you have a need to escape and to just, you know, jump into this fantasy world and just forget about things for a while. But I think, like I always had this amazing dream to go to the Harry Potter world Universal Studios, and it’s been on my bucket list since probably 20.
Chanell Havenga 1:26:31
I’ve been 20, and I’ve saved up to go to exactly that. But after the stroke, things changed for me, and I don’t know, I think, I think I almost felt like, you can do number one, you can do so much more to help stroke survivors with that money, it almost seems foolish to go and, you know, do something silly on the side. And number two, that that didn’t it no longer really interested me.
Chanell Havenga 1:27:15
And I don’t know if you can see my my bookcase behind me, it is full of Harry Potter things. So to say that I was an avid fan would be an understatement, but that literally changed like this. It just wasn’t a priority for me to go anymore. And I, I’m not, I’m not even watching the films anymore. I did try after the stroke, but I got bored, weirdly, weirdly enough I would never say this out loud.
Bill Gasiamis 1:28:02
It sounds like you’ve just changed, you know, from your that’s a new it’s a different season, you know. So, yes, your willingness to be, to escape, to be into something that got you out of the situation that you found yourself in, at work, at home, in life, has lessened. It seems like you have grown accustomed to being a little braver, focusing on what you’re challenged by, learning how to overcome that, how to share and support other people going through that.
Bill Gasiamis 1:28:41
Which means you can’t be disconnected from you can’t have cognitive dissonance from your situation, because things wouldn’t wouldn’t improve for you, and it wouldn’t allow you to help improve other people. So I found myself in a similar way. I spent a lot of time. I did a massive deep dive for almost a decade into all the things that I could do to help people myself overcome stroke, be better, etc, the book happened.
Bill Gasiamis 1:29:11
And then once the book happened, my desire to learn more and more and more has kind of eased, and it only picked up when other people who watch the podcast and listen to the podcast sent a message saying, Can you comment on this intervention? Can you comment on this supplement? Because now I have a reason to comment on something medical or a supplement or an intervention, and I can study it for a little bit, make a video about it seven to 10 minutes.
Bill Gasiamis 1:29:45
It’s done, and then I’m done with needing to know that. And what I found myself doing recently is sitting in front of the TV in one of the many subscription TV movie subscription things, and looking for old movies. I grew up with, and that made me feel in awe of a situation. So firstly, if you want to experience Awe, I highly suggest doing it in nature, going into a temple or an amazing cathedral, and go there and become awe inspired.
Bill Gasiamis 1:30:16
But the things that gave me awe as a child, like, you know, from a 10-year-old, were movies like Raiders of the Lost Ark, you know, Harrison Ford, and those types of movies which were just epic and just the most amazing adventures. And I see those, and I and, and it’s, you know, obviously, very Hollywood, but it’s a different kind of it’s not a shoot ’em up action, just the ridiculous amount of guns flying. It’s a hero’s journey.
Bill Gasiamis 1:30:47
It is a story about somebody who’s going through tough times. They they find themselves with all these obstacles. They overcome them, they find the solution, they implement it, and then they they live happily ever after, so to speak.
Bill Gasiamis 1:31:04
Yes, I find myself going back to those types of movies to try and relate to or associate as that type of character, a character who goes through what they’ve been through, but regardless of what’s coming up, high blood pressure, whatever the next thing is, it’s like, okay, well, we’ll tackle that as well. We’ll work it out, and we’ll, we’ll overcome and we’ll, we’ll rise again, and until we can no longer. And then, and then the job’s done.
Speaker 1 1:31:39
Yes, and to, just to add to what you’ve said, Bill, I think this quote, My favorite quote is, so it’s so fitting to what you’ve just said, and it is my favorite quote is, make like a lighthouse and shine. So yes, I believe that you know, we do adjust to our situation as you’ve adjusted and you find comfort in and that story where this character is evolving, you know, and going through all of these trials and tribulations and coming out on the other side, and he’s okay, and you are able to resonate with that.
Chanell Havenga 1:32:35
And I think it’s important for us to find comfort in in those little things. And haven’t you noticed? It’s, it’s also a bit like the little things in life that we, you know, you read about it. Oh, it’s the little things in life that are actually the big things. But I feel like we as stroke survivors get to live that, you know, because it actually is the little things once, once all of the other things that are basic have been taken away from you, then you realize how massively big those little things actually are.
Bill Gasiamis 1:33:18
Yeah, thank you so much for joining me on the podcast and reaching out. I really appreciate it. And at the end of the in the show notes will be links to all your social media, your book, etc. And I’ll encourage people to go along and have a look at those and reach out to you as well. It’s lovely to meet you. Thank you so much.
Speaker 1 1:33:45
It’s been so so great to meet you, Bill. And I’m so thankful for this opportunity. I really am. You are so inspiring. You really, really are and I want to encourage you to please keep doing what you’re doing. I don’t think, I mean, I think you can, but I don’t think you can even fathom the difference this really makes. So thank you for having me.
Bill Gasiamis 1:34:15
My pleasure, I really cannot fathom the difference that it makes, I cannot grapple, I cannot wrap my head around it. It’s I just cannot, and I don’t want to. I don’t need to. All I know is I am on a mission to get to 1000 episodes. Thank you for being one of them.
Chanell Havenga 1:34:36
You are most welcome. Thank you, Bill.
Bill Gasiamis 1:34:40
Before we wrap up another thank you to Banksia Tech for supporting this episode and making stroke rehab tools like the Hanson Rehab Glove by Syrebo accessible for more stroke survivors. If hand movement is part of your recovery, this glove might help visit banksiatech.com.au, or use the links in the show notes and. YouTube description. Now let’s reflect on what we just heard.
Bill Gasiamis 1:35:04
Chanell didn’t just survive a massive stroke. She lived through a complete identity collapse and started over. She turned her journals into a published book. She helped other stroke survivors in South Africa find hope, and she’s reminding us that, and she’s reminding us all that even when your body feels foreign and your mind feels lost, there is a new version of you waiting to be born.
Bill Gasiamis 1:35:29
Healing isn’t just physical, it’s emotional, mental and existential. And while this path isn’t easy, you don’t have to walk it alone. If this podcast has supported you in any way, and you’d like to help me reach 1000 stroke survivor interviews. Please consider supporting the show on Patreon. Your support helps keep this project alive, covering the cost of editing publishing and continuing to amplify real recovery stories like Chanel’s.
Bill Gasiamis 1:35:57
And if you’d like to explore more stories of transformation. Check out my book, The unexpected way that a stroke became the best thing that happened, written by a survivor. For survivors, you’ll find the link in the show notes and the YouTube description, until next time, keep enduring, keep becoming and remember you’re not just recovering, you’re rebuilding.
Intro 1:36:20
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed all.
Intro 1:36:37
Content on this website and any linked blog podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis. The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.
Intro 1:36:59
The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.
Intro 1:37:14
Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content, if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional. If you are experiencing a health emergency or think you might be, call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.
Intro 1:37:39
Medical information changes constantly. While we aim to provide current quality information in our content, we do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide, however, third party links from our website are followed at your own risk, and we are not responsible for any information you find there.
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Emily had a stroke while pregnant at 26. 17 years later, she opens up about healing, motherhood, and how she found strength after the chaos.
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Emily and I recorded this episode while feeling the weight of our deficits — what followed was one of the rawest conversations on stroke recovery.
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At 66, Thomas Graham faced a sudden pons stroke. Discover how he rebuilt his life through mindset, rehab, emotional work, and poetry.
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Dr. Lisa Murphy, CEO of the Stroke Foundation, discusses stroke recovery, advocacy, and the support services stroke survivors need now more than ever.
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From musician to stroke survivor, Lorenzo Price shares his powerful AVM of the brain recovery story and how he rebuilt life after loss.
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Her stroke was missed for 12 days. What followed was fatigue, guilt, advocacy, and a powerful return to purpose. A must-hear for stroke survivors.
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Mike's story of stroke, diabetes, and burnout shows how recovery, resilience, and emotional healing can lead to a stronger, healthier future.
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UCLA stroke drug study gives stroke survivors fresh hope for recovery. Discover how this breakthrough compares to treatments like etanercept and HBOT.
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Carotid artery dissection survival story inspiring stroke survivors to keep going, seek rehab, and embrace hope even in the hardest times.
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Helius PoNS Device brings new hope to stroke survivors by rewiring the brain with neuroplastic therapy and real-world recovery results.
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Doug’s invisible stroke left him cognitively fatigued—but his powerful story shows that healing, support, and meaning are still possible.
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A stroke survivor’s raw and inspiring story of healing, resilience, and discovering purpose after three brain bleeds and brain surgery.
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Diabetic Stroke: Tyrone Brown’s Journey of Resilience and Recovery A Stroke Survivor’s Wake-Up Call At 47, Tyrone Brown was living life at full speed—running businesses, serving his community, and enjoying time with his family. But one day, while out with his wife, something strange happened. He dropped a bag. Then, he dropped it again. What […]
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Living with invisible stroke deficits means fighting unseen battles daily. Learn how I manage stroke fatigue, spasticity, and mental challenges.
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After his stroke, musician Graham Hall struggled with speech. In this inspiring story, he shares his journey through Aphasia and recovery.
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Have you been told your stroke recovery has plateaued? Dr. Matthew J. Ashley explains why that’s a myth and how you can keep progressing.
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Types of stroke impact recovery in unique ways. Adam Jackson shares how adaptive sports helped him reclaim his strength after two strokes.
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One month after ischemic stroke: Tony’s journey reveals real recovery challenges, inspiring rehab tips, and key support for true healing progress!
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From stroke to cancer to MND, Clive Branson’s journey proves that resilience and mindset can redefine recovery. Watch his inspiring story now.
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Recovery from small stroke: John Wagner’s story of surviving 3 strokes, 2 Brain surgeries, and reclaiming his life will inspire your journey.
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Mark Vega shares his inspiring journey of resilience, recovery, and hope after an embolic stroke. A must-hear story for stroke survivors!
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Discover how Dr. Shai Efrati’s hyperbaric oxygen therapy (HBOT) is revolutionizing stroke recovery and offering hope for brain regeneration.
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Carmen’s Journey of Physical Therapy After Stroke: A Path of Resilience and Advocacy Introduction: Stroke recovery is often a long and challenging journey, especially when it comes to regaining mobility and independence. One of the most critical components of recovery is physical therapy after a stroke. Whether you’ve recently experienced a stroke or have been in recovery for some time, physical therapy plays a vital role in helping you rebuild strength, coordination, and confidence in your daily activities.
In this blog post, we’ll explore why physical therapy is essential after a stroke, the different approaches that can be taken, and how survivors can maintain progress over time.
The Importance of Physical Therapy After StrokeWhen a stroke occurs, it can lead to significant physical impairments. These may include difficulty walking, using your arms, or maintaining balance. Physical therapy focuses on helping survivors regain these motor functions and improve their quality of life.
After a stroke, the brain undergoes a process called neuroplasticity, which means it can rewire itself to compensate for damaged areas. Physical therapy after stroke is designed to take advantage of this neuroplasticity by engaging the body in repetitive movements and exercises that encourage the brain to form new neural pathways. Over time, survivors may regain lost skills and improve their overall mobility.
Types of Physical Therapy for Stroke Survivors1. Motor-Skill Exercises: These exercises are designed to improve coordination and strength in the muscles affected by the stroke. They often involve repetitive movements, such as lifting the arms or legs, that can help the brain relearn how to control these muscles. 2. Mobility Training: Stroke survivors may experience difficulty walking or balancing. Physical therapists use specific exercises and techniques, such as gait training and balance exercises, to help survivors regain their ability to walk independently. 3. Range-of-Motion Therapy: Stiffness and tightness in the muscles can occur after a stroke, limiting movement in the arms and legs. Stretching exercises and passive movement therapy are used to improve flexibility and prevent long-term immobility. 4. Strength Training: Physical therapists often introduce strength training exercises that focus on building muscle mass in weakened areas of the body. These exercises can include weight-bearing movements or resistance training. 5. Functional Electrical Stimulation (FES): In some cases, physical therapists may use FES to stimulate weak muscles through electrical impulses. This can help stroke survivors regain control of their muscles, improve movement, and prevent muscle atrophy. 6. Balance Training: Stroke survivors commonly struggle with balance and stability. Physical therapy often includes exercises to improve balance, which reduces the risk of falls and helps survivors feel more confident in their movements.
How Physical Therapy After Stroke Helps With Long-Term RecoveryRecovery from stroke doesn’t end once you leave the hospital or rehabilitation center. For many survivors, physical therapy becomes a lifelong process that helps maintain and further improve their abilities.
Some benefits of long-term physical therapy after stroke include:
- Preventing muscle atrophy: Ongoing physical therapy helps keep muscles active and strong, reducing the risk of muscle atrophy, especially in areas that have been weakened by the stroke.
- Improving independence: As survivors regain strength and mobility, they become more independent in their daily lives, needing less help from caregivers.
- Reducing the risk of future strokes: Regular physical activity, guided by a physical therapist, can improve overall health by lowering blood pressure, maintaining a healthy weight, and improving cardiovascular fitness—factors that reduce the risk of a future stroke.
- Boosting mental health: Physical therapy can also improve a stroke survivor’s mental health. As mobility and independence increase, survivors often experience less anxiety and depression, which are common after a stroke.
How to Continue Progress After Initial Physical TherapyOnce formal physical therapy sessions end, it’s important for stroke survivors to maintain their progress at home. Here are some ways to continue the recovery journey:
- Home Exercise Programs: Many physical therapists provide customized exercise routines that survivors can do at home. These exercises are designed to strengthen weakened muscles, improve balance, and maintain flexibility.
- Joining Support Groups: Connecting with others who are also recovering from a stroke can provide motivation and encouragement to continue working on physical recovery.
- Engaging in Alternative Therapies: Yoga, swimming, and tai chi are great examples of low-impact exercises that can complement traditional physical therapy and help stroke survivors continue to improve their flexibility and balance.
Conclusion: Why Physical Therapy After Stroke is EssentialPhysical therapy after stroke is one of the most effective ways to regain strength, mobility, and independence. Through targeted exercises, survivors can rebuild their physical abilities and improve their overall quality of life. The journey may be long, but with persistence and the right support, recovery is always possible.
If you or a loved one is recovering from a stroke, physical therapy offers a pathway to a better and more independent future. By sticking to your therapy plan and continuing with exercises at home, you can continue making progress long after the initial rehabilitation phase.
Transcript Will Be Available Soon…The post Carmen’s Journey of Physical Therapy After Stroke: Strength and Advocacy appeared first on Recovery After Stroke.
Discover harmful phrases stroke survivors often hear from medical professionals and learn how encouragement, not limitations, fosters true recovery.
Support The Recovery After Stroke Patreon Page
Bill’s Book: The Unexpected Way That A Stroke Became The Best Thing That Happened
Highlights:
01:27 Stroke Recovery Timelines
02:01 Never Say Never
02:40 You Look Great
03:06 Just A Little Stroke
03:38 What Are The Chances
04:11 Too Young For Stroke
04:36 This Is As Good As It Gets
Transcript:
Bill Gasiamis 0:01
Hello, everyone. Some time ago, I asked the stroke survivors who follow me on Instagram, what should a medical professional never say to a stroke survivor. And today, I wanted to share what they had to say. But before I get started, if you’re enjoying the podcast and want to support the work that we are doing. Consider joining the recovery after stroke Patreon page.
Bill Gasiamis 0:25
By becoming a Patreon, you’ll gain exclusive access to exclusive content and behind-the-scenes updates, all while helping us continue to bring inspiring stories and valuable resources to stroke survivors worldwide. Your support truly goes a long way in making a difference in the stroke recovery community.
Bill Gasiamis 0:46
Visit patreon.com/recoveryafterstroke for more details on how you can get involved. Now let’s dive into the topic. If you’ve ever been through the journey of stroke recovery or supported someone who has, you’ll know that one of the most difficult parts of the process is hearing limiting, or discouraging comments from medical professionals.
Bill Gasiamis 1:10
Stroke Survivors have shared their stories, revealing the harmful things medical professionals should never say during such a critical time. Today, I want to highlight some of those comments and explain why they should never be said to a stroke survivor.
Stroke Recovery TimelinesBill Gasiamis 1:27
One of the most frustrating phrases stroke survivors hear is about timelines. Medical professionals often say things like, you might not improve much after the first six months, which puts unnecessary pressure on the person recovering. Every stroke is different. To suggest that there’s a universal timeline for recovery is misleading and can diminish hope. Giving rigid recovery expectations can be damaging, especially when those expectations aren’t met within the given time frame.
Never Say NeverBill Gasiamis 2:01
Another damaging statement that came up repeatedly was that medical professionals kept telling survivors what they would never do again. You’ll never be able to do that again, or you’ll never walk again were common phrases reported by survivors, these kinds of comments can strip away hope and lead to giving up before they even try. The truth is, that many people defy these expectations. Stroke survivors shouldn’t be told what they can’t do. They should be encouraged to push their limits with support from those around them.
You Look GreatBill Gasiamis 2:40
Another harmful comment that came up was the assumption that because somebody looks fine on the outside, they are fully recovered, “You look great” seems like a compliment, but for a stroke survivor dealing with invisible disabilities, it’s anything but. It’s important for medical professionals to understand that recovery isn’t just about appearances, it’s about what’s happening on the inside too.
Just A Little StrokeBill Gasiamis 3:06
Then there’s the issue of medical professionals undermining the severity of a stroke. It was just a little stroke. Is something many stroke survivors hear this trivializes the life-changing effects a stroke can have regardless of its size, stroke survivors face monumental challenges no matter how little their stroke might have been. These kinds of comments can leave survivors and their families feeling abandoned and hopeless at a time when they most need support.
What Are The ChancesBill Gasiamis 3:38
Perhaps one of the most heartbreaking experiences came from a stroke survivor who was told that they had just a one to 2% chance of regaining function in their left arm and hand after a hemorrhagic stroke, yet they defied the odds and regained some function, even walking again. This highlights how important it is for medical professionals to avoid giving definitive outcomes based solely on statistics. Every stroke survivor is different, and every recovery is often unpredictable.
Too Young For StrokeBill Gasiamis 4:11
You’re too young to have a stroke. Is another common phrase. This statement dismisses the reality that strokes can happen at any age. It’s especially frustrating for young survivors, who are already dealing with the shock of having such a life-altering event at a time when society expects them to be in their prime. They need understanding and support, not disbelief.
This Is As Good As It GetsBill Gasiamis 4:36
One final damaging comment survivors mentioned was being told that they had plateaued or reached the limit in recovery. This is as good as it gets. It is something many hear, often within the first year of recovery. But recovery doesn’t stop after one year, two years, or even five years, stroke survivors continue to improve every day the five. Applying the limitations placed on them by well-meaning but misguided medical professionals.
Bill Gasiamis 5:06
In summary, what stroke survivors need most from medical professionals is support, encouragement, and belief in their potential for recovery, instead of hearing what they will never do again or being given arbitrary timelines, survivors need to be reminded that progress is possible and that recovery is unique to each individual. As many stroke survivors have proven, the only limits are the ones we place on ourselves, and with the right mindset and support, those limits can be shattered.
Bill Gasiamis 5:40
If you’re looking for more inspirational and practical advice on stroke recovery, check out my book, The Unexpected Way That A Stroke Became The Best Thing That Happened. In it, I share my story and the stories of nine other stroke survivors who discovered post-traumatic growth and found meaning in their recovery journeys.
Bill Gasiamis 5:58
This book will help you understand how to transform a challenging experience like stroke into an opportunity for growth, and it offers valuable insights for stroke survivors, their families, and healthcare professionals. You can find it at recoveryafterstroke.com/book, and I truly believe it will help you discover a deeper sense of purpose and meaning in your own recovery. Thanks for watching and remember your recovery is your journey. No one can define its limits, but you.
The post What Medical Professionals Should Never Say to Stroke Survivors appeared first on Recovery After Stroke.
Fred shares his story of surviving an ischemic stroke, heart attacks, and arthritis, focusing on resilience, recovery, and overcoming adversity.
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Support The Recovery After Stroke Patreon Page
Highlights:
00:00 Introduction
01:39 Surviving Ischemic Stroke
02:13 The Cause Of Heart Attacks
06:45 Mental and Physical Coping with Health Challenges
09:39 Daily Life Adjustments After Surviving Ischemic Stroke
24:47 Managing Aphasia and Daily Activities
36:10 Medical Appointments and Health Monitoring
42:11 Reflecting on Life and Gratitude
56:35 Advice for Stroke Survivors
Transcript:
Introduction – Surviving Ischemic StrokeBill Gasiamis 0:00
Welcome to episode 321, of the Recovery after stroke podcast. In this episode, I’m excited to introduce Fred Reader, a remarkable stroke survivor of not only an ischemic stroke, but also multiple heart attacks and long-standing battle with rheumatoid arthritis.
Bill Gasiamis 0:19
Fred’s journey of recovery is nothing short of inspiring, as he opens up about the challenges he faced from his stroke, including aphasia, fatigue and relearning to walk, and how he’s managed to rebuild his life despite the odds, Fred also shares his experiences with heart surgeries and living with a defibrillator, all while maintaining an optimistic outlook on life, his determination, resilience and practical approach to recovery will resonate with anyone who’s faced a health crisis.
Bill Gasiamis 0:51
This is an episode packed with hope, wisdom and insight for anyone navigating life after stroke. Just before we dive into Fred’s story, I’d like to take a moment to talk about how you can support the podcast. If you find these episodes helpful, inspiring or insightful, please consider supporting the show through Patreon, at patreon.com/recoveryafterstroke, Your support helps keep the podcast going and allows me to continue sharing powerful stories like Fred’s providing hope and practical advice to stroke survivors and their families.
Bill Gasiamis 1:28
Fred Reader, Welcome to the podcast.
Fred Reader 1:31
Thanks, Bill, good to be here.
Bill Gasiamis 1:34
Great to have you here. Tell me a little bit about what happened to you.
Surviving Ischemic StrokeFred Reader 1:39
On the eighth of January, 2020, I suffered a stroke. It was an ischemic stroke on the left-hand side, so I would suffer a little bit from aphasia. But prior to that, I’d had two heart attacks about five years before, and my mother had rheumatoid arthritis, and I got that almost 20 years ago. So had a little bit of an interesting time.
The Cause Of Heart AttacksBill Gasiamis 2:13
What was behind the heart attacks? Did you know how you came to be in that situation?
Fred Reader 2:20
My father’s father died at 48 from a heart attack. My father smoked heavily, drank pretty much like the drink, but yeah, so it was almost going to come to fruition just because of his lifestyle and the fact that his father had a heart problem.
Bill Gasiamis 2:47
Did you have a similar lifestyle smoking and that type of thing?
Fred Reader 2:51
Yeah, yeah. I smoked, I drank, enjoyed it. Enjoyed both of them, far too much, the truth be known.
Bill Gasiamis 3:00
It is a weird thing smoking. I know it’s not good for you, but I miss it, and I used to enjoy it as well, and I still enjoy the smell of other people smoking near me or around me. It’s some weird thing that happens.
Fred Reader 3:16
Yeah, so I understand that totally. I really enjoyed, enjoyed it, but yeah, these I gathered away probably six years before I had my heart attack, just because the rhematoid arthritis was starting and to to help alleviate the rheumatoid arthritis, they give you a thing called methotrexate, which is a drug which has bad effects on your liver. So I decided if I was going to be able to cope with the rheumatoid arthritis, the smoking had to go. So one of those things.
Bill Gasiamis 4:05
And then you had a heart attack six years after you gave up the smoking roughly, and then you had a second one. So what was the reason for the second heart attack?
Fred Reader 4:16
They didn’t find the first one. I had that. I might have felt-illish, whatever the second one I knew about. Second one, it was December, probably two days after my mother in law’s, you know, funeral, and I’ve had a heart attack, and it was pretty, pretty bad, because the right slow to my heart’s damaged the bottom end of its death, so it was a pretty major heart attack.
Bill Gasiamis 5:07
So how old were you when that happened?
Fred Reader 5:09
53.
Bill Gasiamis 5:11
Okay, and then a few years later, you have a stroke, an ischemic stroke. Now, how many years later, and how old were you then?
Fred Reader 5:22
I was 58 and it was in the January. I turned 59 in March. So it’s getting towards the end of the big behavior.
Bill Gasiamis 5:35
And what was the cause of the ischemic stroke? Do they know?
Fred Reader 5:39
No, the best they can work out is that my heart missed a beat, caused us, caused a clot, and it ended up in my brain, and that’s the best I can work out.
Bill Gasiamis 5:55
So you’ve been through a bit of a rough patch, like, how do you how do you mentally cope with all of that stuff that you’ve been through, especially when you got to the stroke right? Are you looking back and going, Why me? Are you looking back and going, I dodged another bullet. Like, how do you mentally work through all of the stuff that you’ve been through?
Fred Reader 6:21
Basically it’s I’ve missed the bullet again, and I’m alive, so you just move forward. Yeah, I’m not real worried about what could have happened if it happens, then you deal with it.
Mental and Physical Coping with Health ChallengesBill Gasiamis 6:45
Yeah, that’s fair enough. That’s a good attitude when you had the heart attack. The second one, that major one, how did it impact your physical part of your life? So I know with stroke, you’ve got some deficits, we’ll talk about those in a minute, but how does a heart attack impact people in their daily lives?
Fred Reader 7:08
Well, one was pretty severe, so I went and had a quadruple bypass in the January. So they opened me up, did for the four of the veins in the arteries, and then I spent six months recuperating, and you basically got to start learning not to walk, but how to walk regularly again, things like that, so you start off with a you start off walking two minutes and five minutes and 10 minutes and 15-20 to get your body back to moving again.
Fred Reader 7:57
Plus I give you a lot of other different exercises. So it was quite an interesting part. And then in the May I went in and got a defibrillator put into my defibrillator put into my left side, and they run to join, to do leads, and they stick into my heart, so they can monitor my heart, so if anything goes wrong with it, I know, or they know.
Bill Gasiamis 8:36
Okay, so you’ve been through all of that stuff early on, and then you have the stroke at around 59 the stuff that you went through and you learnt with after the quadruple bypass, did that help you get through whatever you are facing after the stroke?
Fred Reader 8:58
I believe it did. I recently got, a few years ago, got asked by a friend of mine’s father, you know, what do I think of what what my parents bought home to my life, I turned around thought, about it, and I thought there was nothing wrong with what happened? Because I saw The Good, the Bad and the Ugly, about facing randomized and surviving it, so I had a pretty good idea of how to survive it before it actually happened to me.
Daily Life Adjustments After Surviving Ischemic StrokeBill Gasiamis 9:39
Right, how to survive it mentally and emotionally, because the doctors did their bit. They get you home and all that type of stuff, and now you’ve got to deal with the aftermath. So is it that emotional and mental survival? What specifically do you mean about that?
Fred Reader 9:58
It’s the motion on the. Mental it’s I learnt from my father how to listen to the doctors and how to work out what what will be good for me and what may not be so good for me. So I learned to work out very quickly what they were telling me if it was good or bad and whether it will work for me.
Bill Gasiamis 10:24
So you were kind of in control of your own destiny, informed, and then with the information that you had felt like you could make a decent decision on how you wanted to go about things.
Fred Reader 10:37
Yes.
Bill Gasiamis 10:41
Yeah, and is that important? Does that give you a sense of control in your destiny? How? How is that important?
Intro 10:47
If you’ve had a stroke and you’re in recovery, you’ll know what a scary and confusing time it can be. You’re likely to have a lot of questions going through your mind, like, how long will it take to recover? Will I actually recover. What things should I avoid in case I make matters worse? Doctors will explain things, but obviously you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery.
Intro 11:17
If you’re finding yourself in that situation, stop worrying and head to recoveryafterstroke.com, where you can download a guide that will help you. It’s called ‘Seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website now recoveryafterstroke.com, and download the guide. It’s free.
Fred Reader 11:50
I think it’s the I think least I know what what I should be doing, and it gives me the control that I need make sure I live the lifestyle that I want to live.
Bill Gasiamis 12:07
After the heart attack. The second one, that major one, did you? Were you working? Did you manage to get yourself back to work?
Fred Reader 12:15
I had basically about six months off, without pay, and then I went back to I actually went and got a forward job in Parramatta three days a week, just to see if I could do it. After the first week, I knew I was fine. Then, then my ex boss rang me up and said, Can you come do a couple of days for me? I said, Sure, I can do that. And three and a half years later, I finished up.
Bill Gasiamis 12:56
Okay, so did you go back in a full time capacity, or was it just part time.
Fred Reader 13:01
It was full time, basically. But like, if I needed time off, I just could do with it the way I needed to.
Bill Gasiamis 13:13
And then what happened three years later? How come you decided to give it up?
Fred Reader 13:17
I well, I was, you know, as a contractor, and the business and the organization has was having a lot of changes, and so, yeah, I look at it, and I got rid of all the contractors. So then I went and worked here. And there were just, yeah, month, couple of months, just doing contract work up until I had the stroke.
Bill Gasiamis 13:52
So you’re doing contract work up until you had the stroke. Okay, so then you’ve got the then, then you have a stroke, you end up in hospital, they discover there’s a clot. How long do you spend in hospital?
Fred Reader 14:08
I spent a week in North Shore Hospital. I was taken to West Benita originally, but I ended up in rural North Shore because they’re looking for a surgeon to remove the clot. So they took me when the surgeon was in West we moved. So my wife drove from Royal Shore Hospital, West moved and back to Royal Shore, where she worked.
Fred Reader 14:36
So I ended up in Royal Shore Hospital, and the first thing I knew about it was I woke up in this hospital bed with my wife and son, one of my daughters, her boyfriend, and myself, and like saying ‘Well, you had a stroke. Now, can you give us a 10 words that start with him.
Fred Reader 15:03
Our wife, because I tried to work out with my aphasia, so that was basically the first I knew about it. But from 8:30 onwards. I had no idea what went on during the day.
Bill Gasiamis 15:25
So what was it like experiencing the stroke? Were you aware that you were having a stroke? Was this something that happened? How did, how did it come about?
Fred Reader 15:35
I really don’t know. I came home, I took my car and get service I got home or put the kettle on to make cups in now, whether I actually made the tea or not, I have no idea. I remember I was on the couch and fell off the couch, and the son came down and said, Dad, you’re right. He’s running his mother, she told him to ring an ambulance. He rang the ambulance, and I was taken to Westmead Hospital.
Bill Gasiamis 16:13
Pretty instantaneously. So he’s heard the thud, ran down to inspect and see what happened, and then noticed you were on the ground acting weird.
Fred Reader 16:24
In Cal here, it was probably better description of it.
Bill Gasiamis 16:28
Yeah, right. And your wife, she’s a, Is she a nurse? What role does the hospital?
Fred Reader 16:34
She’s a retired pathology tech, so she worked in the hospital, in a lab, which does all sorts of things are coming up eithers, basically.
Bill Gasiamis 16:48
Okay, so she’s fairly aware of what unwell people look like, or what might be going wrong. She would have come across people who’ve had strokes before, but she knew enough over the phone, simply by what your son said, that you guys weren’t going to work it out between the two of you.
Fred Reader 17:10
No, so immediately rung the ambulance, and they were already within 20 minutes.
Bill Gasiamis 17:19
And then when you’ve come home, what are you dealing with, well? Or did you come home? Did you end up in therapy first?
Fred Reader 17:25
I ended up in Royal White Hospital for about two weeks, and they started therapy. Get learn how to, I had a lot of speech therapy with them, and physical therapy, which I actually probably enjoyed more than most people, which I did enjoy.
Bill Gasiamis 17:58
Why did you enjoy it though that’s the interesting part.
Fred Reader 18:02
I think, because I always played sport, I always trained, even though I smoked like a chicken. But, yeah, I always enjoyed the training part of it, so that so I was just kept telling myself, I’m just going to train and goodbye.
Bill Gasiamis 18:21
Right? So it’s all about really, you felt like it was a bit of a, not a competition, but a challenge that you needed to go after.
Fred Reader 18:33
Yes, yeah, basically.
Bill Gasiamis 18:39
Was it frustrating not being able to talk.
Fred Reader 18:43
Yes, it was, I like a chat. And, yeah, I found it very difficult. You know, I think within the Sunday after I had, this was a Wednesday when I had an Australia, the Sunday friends of ours came, and I spent the whole time being absolutely scared shitless that if I opened my mouth, I had nothing to say and just look like a minute. And that that that was one of the big problems I suffered with my stroke, not being able to communicate quickly and smartly, so that was a real challenge for them.
Bill Gasiamis 19:29
So you had a pretty quick tongue before that, and now you’re in a situation where the words aren’t coming the aphasia. So what happens with the Aphasia for you? What’s it like? Is it that you can’t think of the word, or you can’t get it out.
Fred Reader 19:44
It’s a combination of both. It’s combination of both. Sometimes I can’t think of the word, and then I’ve gotta quickly find a new word. Or sometimes I just have that it’s like a starter type of thing, because I know. What I’m trying to say, I’m probably trying to get it done quickly, so don’t forget it.
Bill Gasiamis 20:05
Okay, so it’s catch 22 or in one instance, you might be not being able to remember the word. And then when you remember it, you just want to spit it out. And then by the time you spit it out, you’re afraid that you might forget it if it doesn’t come out quick enough.
Fred Reader 20:20
Yeah, basically, that’s it, yeah. So it’s a real good, real good pandemic at the moment.
Bill Gasiamis 20:27
Yeah, right. It seems like you’re fairly good though. I mean, as far as your presentation here, it seems like you’ve come quite a long way when you compare yourself to what you were like at the beginning. Did you see a massive difference?
Fred Reader 20:45
Yes, I do. My wife does, there are times when I frustrated because especially as the the fatigue kicks in mid afternoon sometimes, and I probably know they have a bit of a rest, and I’m not doing whatever reason. I do actually get her, she gets a bit come on, get it said quickly. Let’s go on with get on with it. So it can be still frustrating.
Bill Gasiamis 21:18
Yeah, so in the evening, you find yourself sort of running out of battery, and then the delay between the word and the speech increasing.
Fred Reader 21:32
That’s basically, yes.
Bill Gasiamis 21:36
Yeah, do you find that you’re good in the mornings?
Fred Reader 21:41
Yeah, I’m pretty, really good in the mornings. And as as they get goes on, it can get worse. But I’ve got been out at night with friends and found it, you know, have a rest during the day, and I’ve, you know, been good up until say 11:00 – 11:30, and then I’m ready to go home and rest up.
Bill Gasiamis 22:09
So during the day, if you get a recharge in, then you can go for a little bit longer, and you can be your your speech can flow a little easier.
Fred Reader 22:19
Yes, yes, so I try to have a break. You know, snooze in the afternoons, that’s not all, all times when I remember.
Bill Gasiamis 22:32
Yeah, fair enough. I mean, it’s probably when you feel most need, I would imagine, right?
Fred Reader 22:39
Yes, yes, that’s right, yes.
Bill Gasiamis 22:43
How long does a recharge need to take? Is it an hour? Is it less?
Fred Reader 22:48
Sometimes it can be 20 minutes, if it’s good, sometimes it can be an hour. It just depends on the day, the time, the place, yeah, when, whether I’m wanting to do something more.
Bill Gasiamis 23:06
So depending on the agenda, whatever you’ve got going for the day. So if there’s something coming up, it’s probably a good idea to get that rest in early on so that you can actually get to that particular event and not miss out.
Fred Reader 23:19
That’s usually the way I work it, yes.
Bill Gasiamis 23:27
So what’s it like now that you’re at home after the stroke? I imagine that you haven’t returned back to work? Is that something that’s not happening now.
Fred Reader 23:38
I retire basically the day of the stroke, one of my daughters grabbed my phone and went through and it’s going through every name that she knew and every name she didn’t. She’d ask me, who’s this person? And I’m going, then, what are you looking for? He said, Your finance bloke. Turned around said, Yeah, I know who he is.
Fred Reader 24:06
She said, Well, tell me who he is, so grab the phone, gave her the number. She rang him, and she turned around said, well, got him called to him, and he said, Well, you’ve got enough money to retire, so yeah, why? Why? Wouldn’t bother going back for work? But basically, it just made sense for me to retire.
Bill Gasiamis 24:34
What kind of work were you doing?
Fred Reader 24:36
I was an accountant. So basically sitting in an office and work, work, work on a computer.
Fred Reader 24:45
Dealing with numbers all day, how is dealing with numbers these days? And what is that like for you?
Surviving Ischemic Stroke Managing Aphasia and Daily ActivitiesFred Reader 24:47
I try not to deal too much with numbers these days. Yeah, my wife pays all the bills just because it’s easier.
Bill Gasiamis 25:09
So the impact of the stroke has definitely sort of messed up with that, that part of the your your skills, it was it a does it feel like the skill is still there, or have you lost the brain energy that’s needed to focus on numbers for a period of time?
Fred Reader 25:34
I can, I can do numbers, but like, half an hour to 40 minutes, I started tire from it. I was doing some I was treasurer of a couple of small organizations, which I gave away just because I didn’t really want to, need to, you know, do it two three hours every other day to keep these things running. So I decided it was time to retire from them and find some let somebody else have the joy.
Bill Gasiamis 26:11
The joy?
Fred Reader 26:15
Or the problems.
Bill Gasiamis 26:16
Yeah right, or the problems, yeah, okay. So I understand what you mean about that fatigue and the tiring, it was definitely like that for me. You know, looking at a computer screen after brain surgery and trying to recover from that was such a challenge. I mean, it was such a brain drain, and then I never felt confident that I was doing anything that was I never felt that I was it was accurate.
Bill Gasiamis 26:47
You know, there was mistakes that I wasn’t aware of, that I was happening. People would have to go over it and double check everything, and it was really frustrating and annoying. But I’m not in the position to retire, and, you know, I had to kind of persevere and push on, and it’s improved over time. I know that you don’t do that now for a living, and you’re not a treasure anymore, but have you also seen an improvement in your ability to concentrate on things like that for a little bit longer than you initially were able to.
Fred Reader 27:23
Yes, yeah, I can up. I still read a lot, but like I read in 20 minutes, 20 minutes sessions I do, 20 minutes in the morning, 20 minutes in the afternoon, 20 minutes before I go to bed. Just so I think my ability to read going I find that I always enjoyed reading, and I used to read three books a month. These days, I’m lucky to do a book and a half.
Bill Gasiamis 28:01
Right? Okay, so you still managed to find a way to squeeze in an hour, but you just break it up over the course of the day instead of doing all at one block.
Fred Reader 28:10
Yeah, that’s basically it.
Bill Gasiamis 28:13
So if you’re getting through three or four books a month previously, you’re doing several hours a day of reading.
Fred Reader 28:21
Oh, yeah, yeah. Like, I used to, like, I I’d start 10:30 and read until Yeah, one, yeah, 12:30 and then go to bed.
Bill Gasiamis 28:36
Right? That’s such a session of reading. You’re talking about 10:30 in the morning?
Fred Reader 28:41
In the evening.
Bill Gasiamis 28:43
I Was going to say, okay, so you do a couple of hours of reading solid previously.
Fred Reader 28:53
My father used to do that. And I think I that’s where I got the I got the want to do it.
Bill Gasiamis 29:02
And with aphasia. Now, because I know anything about aphasia, really, does that impact your reading as well? Is it, or is that not an issue with aphasia.
Fred Reader 29:15
I find it a lot harder to read constantly these days, partly, partly seen fatigue, but the Aphasia I found more in the writing, writing reports and things like that. I’m glad I don’t have to worry about these dances. There’s all there’s a lot of reports that sometimes you have to write in accounting, and that’s the part that I really would struggle with. Days writing emails. Sometimes I think to myself, Do I really have to do this? And I know I have so. And you do it, but it takes a lot longer to write them now than it used to.
Bill Gasiamis 30:07
So not only is the speech getting the words out of your mouth, like with your tongue, a problem, is it also an issue when you’re putting the words on the paper or on the keyboard? Is it that the words, again, aren’t coming to you, or when they are coming to you, they’re difficult to extract and place on the keyboard?
Fred Reader 30:32
Yeah, it’s that. It’s that whole, it’s the whole thing. Yeah, it it’s finding the word, it’s writing the word, it’s speaking the Word. So yeah, that’s and that sometimes does frustrate. I was trying to write something which I finally just about finished. I’ll go and have another look at it later today for for a piece I’m going to put out on my website about aphasia, and that’s taken called, lot of work to actually do. I’ve actually then I’ll send it to a friend of mine who usually reads these things form, and just to make sure I have that in facility.
Bill Gasiamis 31:14
Let’s take a quick pause here, but we’ll be right back with Fred’s story shortly before we continue, I want to remind you about my book ‘The unexpected way that a stroke became the best thing that happened. It’s not just a memoir, it’s a guide on how to achieve post traumatic growth after stroke.
Bill Gasiamis 31:32
In this book, I share not only my own story, but those of other stroke survivors who turned their trauma into an opportunity for growth. If you’re seeking hope, resilience and practical steps to improve your life after stroke, this book is for you. You can find it on Amazon by searching for my name, Bill Gasiamis, or by heading over to recoveryafterstroke.com/book.
Bill Gasiamis 31:57
Right? Just to check over it, just just to edit it.
Fred Reader 32:00
Yeah, that’s it.
Bill Gasiamis 32:02
Wow, It really gives you a real kind of what you’re described, a deeper understanding of what people experienced with aphasia and how challenging it is, and then there’s the other side of it, is that people who don’t understand what you’re going through, they probably also get frustrated, or think, why is this guy not finishing his sentences?
Bill Gasiamis 32:29
Do you have that experience as well where people kind of look at you and misunderstand not only what you’re saying, but why you’re speaking the way that you’re speaking.
Fred Reader 32:42
Yeah, normally, if I’m reading people, I tell them I’ve got aphasia. I used to be very worried about that from long time. And then I realized, if you actually explained to people what aphasia is and why you have trouble speaking with them, they tend to understand, or least give you a little bit of leeway with them. So it was very difficult in the start to explain to people that I have aphasia and give them a quick, brief, quick, brief talk about it, because I don’t want to bore them. So yeah, basically, I just tell them that aphasia affects your ability to speak and communicate in general.
Bill Gasiamis 33:33
Yeah, and they give you a little bit of grace. So it seems like you’re coming along quite well, you’ve previously said that you were physical, quite physical. You didn’t mind a little bit of physical activity, that type of thing. Where are you now? With physical activity, what do you are you able to do?
Fred Reader 33:55
I walk a lot. Walk up 6k most days. Except occasionally my right knee blows up, and I slow that down, and what I do is I do one day walk. The next day I do exercises from the knees, and then the following day I walk again, so I’m basically just about to start that up again. My right knee’s blowing up a bit at the moment.
Bill Gasiamis 34:29
Are they just all sports injuries?
Fred Reader 34:33
It’s that and rheumatoid arthritis, a bit of osteoarthritis in my right knee, so it’s the combination of the two of them are pretty, pretty severe sometimes
Bill Gasiamis 34:46
I hear you Okay, so they get swollen and inflamed. Yes, okay, alright, understand. So exercise, though, is really important when you have rheumatoid arthritis, if I understand correctly, it’s encouraged, isn’t it very much? And do you find that that creates a lot of pain, and therefore, do you have to medicate that pain?
Fred Reader 35:15
I try not to use anything other than the drugs that I’m on or the rheumatoid arthritis, no heart problems and stroke. I don’t tend to use any other medication. If I can avoid it occasionally, I’ll get a couple of Panadol Osteo or something like that, just to remove the pain if it’s really bad, but I try to work way through it.
Bill Gasiamis 35:49
Okay? And it does, it, does the pain? Did the pain improve? Decrease? Get worse? Did it change after the stroke? Did you notice a difference in the way that you experienced the pain? Or has it kind of remained as it was?
Medical Appointments and Health MonitoringFred Reader 36:10
It’s It’s remained pretty constant, because I was very lucky with my arthritis, that medication had actually stopped it a lot, or made it go into like, reduced a lot. I don’t get a lot of pain these days, and I hope to continue on with that, but it’s all on the luck of the gods, I’ll go back to see my rheumatologist on Wednesday. They have a look at my knee, so wait and see.
Bill Gasiamis 36:42
So you’re dealing with the aftermath of the heart, rheumatologists, because of the arthritis, and neurologists, I imagine, or doctors regarding your brain. What’s your your calendar look like as far as doctor’s appointments go?
Fred Reader 36:59
Sometimes it’s just nothing. Yeah, there’s a few. I’m coming up to the 10 year of my defibrillator, and the battery’s about to run out. So I’ll see one of my cardiologists every three months, at the moment, just to work out when he’s going to take me in and put the new battery in. But other than that, I see the rheumatologist three times a year, the cardiologist most of the time, once a year, and when I need the neurologist, I see them.
Bill Gasiamis 37:42
Okay? So it’s not too overwhelming. There’s not too much to.
Fred Reader 37:46
Not at the moment, but there was times it felt like every other day I was younger, doctor’s appointment.
Bill Gasiamis 37:54
So with regards to the battery that you’re talking about, where does that particular defibrillator sit is it also known as a pacemaker?
Fred Reader 38:03
No. Pacemaker is different. It’s basically just about there.
Bill Gasiamis 38:10
Just beneath the shoulder kind of.
Fred Reader 38:12
Yes, just below the shoulder, just underneath the shoulder.
Bill Gasiamis 38:19
And how big would you say it is? Can you feel it?
Fred Reader 38:22
Oh, yeah, yeah, it’s about that big.
Bill Gasiamis 38:25
Okay, so a couple of inches?
Fred Reader 38:27
Yep, and it’s, yeah, they, they kept me open, and I was awake the whole time, and you had this bloke there, cutting away, putting it in, checking it out, really quite interesting.
Bill Gasiamis 38:47
Was he chatting about anything, or was he just focused on his job?
Fred Reader 38:51
I was talking with the anesthetist most of the time, at the occasion, he said, could you simply quite I’ve got to get this bit right. Yeah, so I got to know my cardiologist very well over the years.
Bill Gasiamis 39:09
So you’ve got this thing, and now you’re probably going to go in similar procedure. You’ll be awake, they’ll take it out, replace the battery, and then pop it back in, and is it just a little incision that they make.
Fred Reader 39:21
Yeah, it’s two inches wide, two inches long, maybe three.
Bill Gasiamis 39:28
And then you’re off home, or you’re recovering at hospital.
Fred Reader 39:33
The first one, I spent a night in the hospital as I had no idea what it’s going to be like this time. I presume we’ll probably be a night.
Bill Gasiamis 39:43
Yeah, that’s pretty cool Fred, I mean, I everything that the medical people do these days is really cool. Like, don’t get me wrong, everything but the free. A defibrillator as well in that chest that’s that small, that’s two inches or so big, just is unbelievable, when you think about where technology is and how far it’s come, and how that thing operates, and then they can just pop up, pop it in and take it out and change a battery and keep you going. Do you ever think about all of that stuff and just get blown away? How do you deal with all of that?
Fred Reader 40:34
Absolutely, when they told me I was going to have one, I thought what I understood the reason why, because my heart doesn’t beat well, and it’s important for me to understand that something goes wrong, this will pick it up, and every night, there’s a box in my next to my bed, which actually transfers it from from a defibrillator to a computer in North Ryde.
Bill Gasiamis 41:15
So it goes from your house, it downloads and sends that information to the medical team in the hospital in North Ryde.
Fred Reader 41:22
No, it’s a company, and they’ll what the they let the doctor know if there’s a problem.
Bill Gasiamis 41:36
Okay, so the private company has that system set up, downloads data, and then they report on anything strange or abnormal or something that they need to know about so that they can act when it’s happening.
Fred Reader 41:51
Yes, basically yes. That’s quite an quote and yeah, and a pacemaker, all that does just my father had one of them before he passed away.
Bill Gasiamis 42:04
This is far better than a pacemaker.
Fred Reader 42:08
Well, yeah, hopefully.
Reflecting on Life and Gratitude After Surviving Ischemic StrokeBill Gasiamis 42:11
Yeah, sounds like it. Are you aware of it? Does it sort of slip out of your mind sometimes? Or are you always aware that it’s sitting there and doing its thing?
Fred Reader 42:20
I think most of the time, I don’t, I forget it’s there until I have a shower and I doubt, oh, what’s that overlap? Oh, yeah, that’s still there, yeah, it’s that type of thing. You know, it’s there, but, and it’s doing whatever it’s doing, and it doesn’t you you notice it, if I’ve gotten no shirt on not doing that now, but yeah, that’s about the only time you notice it.
Bill Gasiamis 42:53
Right, so does it give you information, any information at home that you need to know of does it beep or make any noises? Or did you notice anything? I imagine with the pacemaker, people would notice that it’s kicked in and shocked the heart, right? So is this also doing that job, or is it just doing that?
Fred Reader 43:16
Let you know if there is a problem, had a couple beeps go off and and just on the hospital down, that was just something gone, going a little higher wire. But they reckon if it needs to kick in, you’ll know, know about it, because it’s like, been hit, hidden your chest by a bloke about 20 stone. That’s quite a large bud, and it makes a large beat, so you really do know what’s there.
Bill Gasiamis 43:52
That it’s been activated as well, you’re 100% aware of it.
Fred Reader 43:55
Yes, yes.
Bill Gasiamis 43:59
Is this thing that you’ve gone through with your heart is that, so if you if you could kind of put them in order of, kind of, what’s the hardest thing to deal with or the most challenging, what order would you put these things in? Because you’ve got rheumatoid arthritis, you’ve got stroke, you’ve got heart attack. Like, is there an order? Like, am I even making sense?
Fred Reader 44:25
Like, I always think that the strokes probably the bigger one because of the effect the mind, it stopped me from working full time, and it made my life very interesting, say my least.
Bill Gasiamis 44:47
Is that code for harder or more difficult? What is very, very interesting code for.
Fred Reader 44:53
Probably, probably, yes, it is harder, but I. I I still find great enjoyment from the fact that I’m still alive. Yeah, my fellows have a child, so I’m still around to see that. You know something, yeah, my grandfather didn’t do. So those type of things I’m very, I feel very grateful for that are still around to be involved.
Bill Gasiamis 45:26
Yeah, how? How heavy of a smoker were you?
Fred Reader 45:34
Well, minimum 40 a day.
Bill Gasiamis 45:38
Yeah, that’s heavy. Was it easy to quit? Did you go through withdrawals, or any of those types of challenges?
Fred Reader 45:48
No, I basically bought some of that gum stuck baby. After about two weeks, I was pretty much fine, but I knew I had to give it up. And something my father said to me, being able to give it up before you have to give it up is a lot easier than you’ve gotta give it up.
Bill Gasiamis 46:15
Yeah, so you were ready to give it up, you’d made the decision, and you reckon a couple of weeks of chewing gum was enough. It just kind of so it was more about the, was it more about the nicotine or the chemical addiction, rather than the, you know, for me, it was also that, but more importantly, it was kind of the, where do I put my hand for the rest of the day, you know kind of thing.
Fred Reader 46:39
That was a that was a problem for a while. I must admit that too, because, yeah, Once upon time I was really doing this, yeah. And, I mean, yeah, there were times when I finished one cigarette and what the next one type of thing. Yeah, it happened, but yeah, it was one of those things, I enjoyed it a lot. Still miss it yeah.
Bill Gasiamis 47:05
And now with your walking, do you find yourself extremely exhausted at the end of that walk? What’s the routine after the walk? Because I remember when I was first sort of getting physical again and learning how to walk again, and maybe I wasn’t doing six kilometers at the beginning, but I used to go to the gym and do some light sessions, and then I’d be like wasted for the entire day. How do you recover after you’ve done your your six kilometers?
Fred Reader 47:39
Pretty good, because I’ve been doing it for a long time. I basically I because of the room to an arthritis I stopped running, but I started walking, and I try to walk 6k in 72 minutes. So I’m trying to do it like I raced with myself, just to keep it interesting, like, but when I, when I first had my heart attack, I’d do 2k and I’d be buggered for the hours. But as I continue to work at it, I become a lot better.
Fred Reader 48:24
I can come home, sit down, do whatever I need to do, and then move on again. Yeah, and I like to get that done somewhere. Yeah, 7:30 in the morning. It’s the latest I want to start the walk. Now I like to get it done early. A, it’s still foolish, and B, it works in with my lifestyle.
Bill Gasiamis 48:54
Yeah, right. So is it easier to do in summer or in winter? Does the weather affect you?
Fred Reader 49:02
I’d much rather it in the winter than the summer. The summer, it’s very hot, and I end up pretty much needing a shower by the time I get back.
Bill Gasiamis 49:13
You end up cooking. Do you live near the seaside?
Fred Reader 49:19
Now I’m about 25k-35k from the seaside, but I live by a river.
Bill Gasiamis 49:30
Okay. Yeah, I understand what you mean about the weather. Now, for me, I much prefer, as well, being out of the sun as much as I can during the afternoon, and that’s the kind of time where you hear everyone sort of say, you know, between 11:00 and 3:00, keep on the retreat. We had that song that we used to get sung to us about being sun safe. You know about over exposing ourselves our skin to UV rays, right for skin cancer risk.
Bill Gasiamis 50:14
But I find, like in summer, if I’m out and about, and it’s kind of those mid day hours afternoon, it’s really difficult to deal with the intensity of the sun, especially on a hot day, and I’d be inclined to just sit under the shade for three or four hours in the one spot, and not move and do anything, just so that I could avoid being exposed like that. And it makes going to the beach kind of interesting, because you see all these people sunbathing and being completely, totally exposed.
Bill Gasiamis 50:51
If I haven’t got a beach umbrella, I won’t go to the sun. You know, to the beach in summer at all. There’s no point being there because it’s not enjoyable, and I actually can’t cope with being that hot and over exposing myself. And that’s got worse after the stroke for me.
Fred Reader 51:14
Yeah, I find the same and also just some of the drugs that I’m on, getting sunburned is not a good idea, so I tend to stay away from the sun. Yeah, and I still love the beach. Yeah. And my daughter, Bill’s daughter bought a place in Port Macquarie, which is a beach house place, beautiful, and we end their 15 minute walk from the beach.
Bill Gasiamis 51:49
So what are your meds? Why do your meds make getting sunburnt worse? Not that it’s not bad enough. You’re already getting sunburnt. But why is it even worse with those meds?
Fred Reader 51:58
It’s got to do with something that my first rheumatologist just told ‘Don’t get into the sun’. It’s got to do with the methotrexate. It’s just one of those byproducts of it, cos it was an old cancer drug in the 50’s, which I found helped people with rheumatoid arthritis. Now, it’s one of those things they get, they tell you, I’m not going to and it doesn’t greatly borrow me these days.
Bill Gasiamis 52:32
Yeah. What’s very interesting, I’ve never heard of it before, but that is interesting. So with regards to your stroke, like, what’s the hardest thing about stroke for you?
Fred Reader 52:42
I think it was the fact that I didn’t know what had happened, and it was a major thing that happened, and I didn’t actually really know what happened. And the aphasia, and the fatigue. Yes, I understood fatigue from before, because the arthritis and the heart problems gives you fatigue, but the neurofatigue is a lot worse.
Bill Gasiamis 53:19
Yeah. What has stroke taught you?
Fred Reader 53:23
Well, be grateful that you’re still alive, you know, and that I can still enjoy my life. Yeah, one of my daughters got married after we had this stroke and the first one got married just before I had the stroke, so yeah, and I’m still able to go out, be with friends, enjoy my life, although occasionally have trouble talking to people.
Bill Gasiamis 54:00
Did you not okay? This is going to sound weird, I know you’re grateful, right? But with your heart attack, did you not have that? I’m grateful to be alive moment. Or what was that like? Was that a similar experience?
Fred Reader 54:15
I think, remember actually talking to a friend of mine said, What do you think I turn around? Said ‘To be perfectly honest with us, quite grateful that it happened now I can get on with the rest of my life’, because I always had this great fear that I could die, die because I smoke like a chimney, and you know, if it happened earlier, probably could have, and it was something my father, when my father was had his his heart attack.
Fred Reader 54:51
His cardiologist turned around and said, for a bloke who smoked more than 60 a day, which is probably the better when I can work out for you, and you’ve suffered a heart attack and still alive, I’d go and buy yourself a lottery ticket, and that that basically was that stuck with me for a long, long time, didn’t make me stop smoking.
Bill Gasiamis 55:18
But you had even like you still had that monkey on your back. You still thought that this is probably going to happen to me, and then you were relieved that it was out of the way?
Fred Reader 55:29
Yeah, yeah, because my family was smoked heavily, and three, my father had four, and three other siblings, two of them had heart attacks, and they all had it at 54.
Bill Gasiamis 55:55
Okay, so this might sound weird, right? Didn’t you think that maybe it’s a good idea to stop that lifestyle way before any of the trouble, so that you don’t have what happened to the others? I know you probably think that that’s the right way to go now, but back then, it never occurred to you that I could change my lifestyle do something different?
Fred Reader 56:23
No, yeah. No. Like, look, I started smoking at 14. I was going to do it to the day I died. Thankfully I didn’t.
Advice for Stroke SurvivorsBill Gasiamis 56:35
Yeah, again, now, with regards to stroke, there’s people listening to the podcast. They’ve been around for a while, perhaps they just started their recovery. What do you want to tell somebody about stroke recovery? What wisdom would you like to impart on them?
Fred Reader 56:56
Listen to what the doctors tell you. Work out, what will work for you, and remember, you’re the only person who can make your recovery what it is, so you’ve actually got to do all the work.
Bill Gasiamis 57:13
Thanks so much for that, Fred. On that note, I really appreciate you joining me on the podcast.
Fred Reader 57:18
Thank you, Bill. It’s been wonderful.
Bill Gasiamis 57:20
Well, that brings us to the end of another episode. I hope. Fred’s incredible journey of surviving an ischemic stroke, heart attacks and managing rheumatoid arthritis provided you with hope and valuable insight. His strength in the face of multiple health challenges and his determination to live a full life despite aphasia and other deficits is truly inspiring. Thank you to everyone who has already left a review. It helps others find the show and provides much needed encouragement to stroke survivors.
Bill Gasiamis 57:52
If you haven’t already, please consider leaving a five-star rating and sharing your thoughts on iTunes and Spotify and for those watching on YouTube, remember to like, comment and subscribe to the show to stay updated on future episodes. If you’d like to further support the podcast, you can do so by subscribing to our Patreon page at patreon.com/recoveryafterstroke.
Bill Gasiamis 58:18
Every contribution helps bring stories like Fred’s to more people who need encouragement and advice on their stroke recovery journey. And if you know a stroke survivor or you are one yourself and you have a story to share, I’d love to hear from you. My interviews are relaxed and unscripted, just come as you are. Lastly, if you have a product or a service related to stroke recovery, consider sponsoring an episode. Visit recoveryafterstroke.com/contact to get in touch. Thanks again for joining me today, and I look forward to seeing you on the next episode.
Intro 58:53
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals, opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol. Discussed all content on this website and any linked blog podcast or video material controlled this website or content is created and produced for information or purposes only and is largely based on the personal experience of Bill Gasiamis.
Intro 59:23
The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.
Intro 59:48
Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content. If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be called triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department. Medical information changes constantly.
Intro 1:00:15
While we aim to provide current quality information in our content, we do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide, however, third-party links from our website are followed at your own risk, and we are not responsible for any information you find there.
The post Surviving Ischemic Stroke, Heart Attacks, and Arthritis: Fred’s Story of Resilience and Recovery appeared first on Recovery After Stroke.
10 Things Stroke Survivors Should Know After They Have Had a StrokeHey everyone, Bill Gasiamis here. If you’re navigating stroke recovery, you’re likely searching for guidance and support. That’s why today, I want to share 10 things stroke survivors should know after they have had a stroke. These insights, gathered from survivors who have walked this path, will provide valuable information to help you or a loved one in recovery. Let’s dive in.
1. Grieving Your Old Self is Part of the ProcessOne of the most important things stroke survivors should know after they have had a stroke is that emotional recovery is just as crucial as physical healing. Many survivors aren’t prepared for the grief that comes with losing their pre-stroke self. It’s common to feel a sense of loss for the abilities and lifestyle you once had. Understanding that this grief is a normal part of the recovery journey can make it easier to accept and process these feelings.
2. Fatigue is Normal, and Rest is EssentialAnother critical point in the list of things stroke survivors should know after they have had a stroke is that fatigue is a common and expected part of recovery. Many people aren’t told about the extreme tiredness they might experience, which leads to frustration when they push themselves too hard, too fast. Resting doesn’t mean you’re weak—it’s an important part of rebuilding strength and healing after a stroke.
3. Stroke Can Change Your Personality and Mental HealthOne of the 10 things stroke survivors should know after they have had a stroke is that a stroke can significantly impact your personality and mental state. PTSD, anxiety, and depression are common, and these mental health changes can be just as challenging as physical limitations. It’s crucial to seek help early for these issues and understand that personality changes after a stroke are normal, even if they are unexpected.
4. A Supportive Community Can Make All the DifferenceAmong the 10 things stroke survivors should know after they have had a stroke, finding a supportive community stands out as one of the most valuable. Connecting with others who understand your experiences can provide emotional validation and motivation. Whether it’s an online support group or in-person meetings, surrounding yourself with people who “get it” can be transformative during your recovery.
5. Recovery is an Ongoing ProcessAnother important aspect of the 10 things stroke survivors should know after they have had a stroke is that recovery doesn’t have a fixed endpoint. It’s a journey that continues long after you leave the hospital. Progress may be slow at times, but it is ongoing. Survivors often find that even years after their stroke, they’re still making improvements, sometimes in small but meaningful ways.
6. Physical Therapy Focuses on Rewiring the BrainA key point on the list of things stroke survivors should know after they have had a stroke is that recovery is about retraining the brain, not just building muscle strength. Many survivors wished they had understood this sooner. Techniques like biofeedback, neuroplasticity exercises, and electrostimulation focus on helping the brain reconnect with your body, rather than just strengthening muscles.
7. Patience and Self-Acceptance are VitalIf there’s one message to take away from these 10 things stroke survivors should know after they have had a stroke, it’s the importance of patience and self-acceptance. Recovery takes time, and it’s crucial to accept that you may not return to exactly who you were before the stroke. However, that doesn’t mean you won’t improve. Embrace the new version of yourself and focus on what you can achieve moving forward.
8. Diet and Lifestyle Have a Big Impact on RecoveryOne of the more practical items on the list of things stroke survivors should know after they have had a stroke is the impact of diet and lifestyle changes. Proper nutrition, hydration, and a healthy lifestyle can significantly aid your recovery. However, many survivors shared that they didn’t receive much guidance in this area early on. Taking the initiative to improve your diet and overall health can make a big difference in your long-term recovery.
9. Emotional and Social Support is EssentialWhile finding a stroke survivor community is important, another of the 10 things stroke survivors should know after they have had a stroke is that emotional support from friends and family is equally crucial. Unfortunately, some survivors experience distancing from loved ones, which can feel isolating. Focus on those who stick by you and seek emotional support through counseling or therapy if needed.
10. Recovery is Possible, Even When It Feels SlowLastly, one of the most encouraging things stroke survivors should know after they have had a stroke is that recovery is possible, even when it feels painfully slow. Many survivors wish they had known just how much improvement could happen, even years after their stroke. Don’t be discouraged by setbacks or slow progress—keep pushing forward, and celebrate every small victory.
Conclusion: The 10 Things Stroke Survivors Should Know After They Have Had a Stroke
I hope these 10 things stroke survivors should know after they have had a stroke provide some valuable insights and encouragement for your journey. Stroke recovery is challenging, but with patience, support, and the right mindset, progress is possible. Remember, you’re not alone, and every step you take is a step forward.
Thank you for reading. If this post has helped you, feel free to share it with others who might benefit. Let’s keep supporting each other through recovery.
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The post 10 Things Stroke Survivors Should Know After They Have Had a Stroke appeared first on Recovery After Stroke.
Perispinal Etanercept: A Breakthrough in Stroke Recovery?
Stroke recovery is often a long and arduous journey, particularly for individuals suffering from chronic post-stroke symptoms. In recent years, etanercept, an anti-inflammatory biologic typically used for rheumatoid arthritis, has gained attention for its potential in treating neurological deficits related to stroke when administered via the perispinal route. This novel treatment approach is led by Dr. Edward Tobinick and has shown remarkable outcomes in post-stroke recovery, even in patients whose stroke occurred years earlier.
What is Perispinal Etanercept?Etanercept is a TNF-alpha inhibitor, which blocks a protein called tumor necrosis factor (TNF). TNF is known to contribute to inflammation and has been linked to many chronic conditions. In stroke survivors, the brain’s prolonged inflammatory response can prevent full neurological recovery, leading to lingering symptoms such as chronic pain, mobility issues, cognitive dysfunction, and aphasia.
Perispinal administration of etanercept is unique because it bypasses the blood-brain barrier. Typically, large molecules like etanercept can’t easily cross this barrier, but perispinal delivery—combined with head-down positioning for a short period after the injection—enhances the drug’s access to the cerebrospinal fluid, allowing it to reach areas of the brain affected by the stroke.
How Does Perispinal Etanercept Work?The procedure begins with a small dose of etanercept (25 mg) injected near the spine. Afterward, the patient lies in the Trendelenburg position (head below feet) for a few minutes. This positioning allows the drug to move through the cerebrospinal fluid and reach the brain more effectively. Once there, etanercept works to neutralize TNF-alpha, reducing inflammation and calming overactive neural pathways that may be responsible for ongoing stroke symptoms.
Clinical Outcomes and BenefitsStudies and anecdotal reports from patients who have undergone this procedure show that improvements can happen rapidly, sometimes within minutes. Patients have reported significant gains in motor function, cognitive clarity, and pain reduction. In some cases, survivors who struggled with basic tasks regained abilities such as walking unaided or speaking more fluently.
These clinical outcomes have been particularly notable in the treatment of central post-stroke pain (CPSP), a notoriously difficult condition to manage. The most recent randomized controlled trials have validated that perispinal etanercept can offer relief to patients suffering from CPSP and other chronic deficits(Drugs.com)(Stroke America).
Controversy and ChallengesDespite the promising results, the use of etanercept for stroke recovery is still mired in controversy. The American Academy of Neurology (AAN) has expressed concerns about the lack of large-scale, placebo-controlled trials and the potential for adverse outcomes. Nonetheless, small-scale studies and patient testimonies continue to build a case for its effectiveness (Drugs.com).
Furthermore, the high cost of the procedure—ranging from $4,800 to $6,000—places it out of reach for many stroke survivors. Currently, perispinal etanercept treatment is not widely available in the U.S., but it has gained popularity in other parts of the world, particularly in Australia, where recent trials have been conducted (Drugs.com)(SpringerLink).
The Future of Perispinal Etanercept in Stroke RecoveryThe potential for perispinal etanercept to revolutionize stroke recovery is undeniable. Its ability to restore lost neurological functions and reduce chronic pain has given new hope to stroke survivors and their families. With ongoing research and increasing demand for effective post-stroke treatments, it is possible that we will see broader acceptance of this approach in the coming years.
For stroke survivors seeking alternative treatments, perispinal etanercept may offer a new avenue of hope. However, as with any medical treatment, it’s essential to consult with healthcare providers to understand the potential benefits and risks fully.
ConclusionPerispinal etanercept is emerging as a groundbreaking intervention for stroke survivors suffering from chronic post-stroke symptoms. Though it has yet to become a mainstream treatment, the science behind it and the promising patient outcomes indicate that it could play a significant role in the future of stroke recovery. As research progresses, more individuals may benefit from this innovative therapy and regain crucial aspects of their lives long after their initial stroke.
Perispinal Etanercept Experience With Dwayne SempleDiscover how paramedic Dwayne overcame some stroke challenges with Perispinal Etanercept. His inspiring journey offers insights for stroke survivors.
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Highlights:
00:00 Introduction
01:45 Basal Ganglia Stroke
04:34 Getting A Perispinal Etanercept Treatment
07:33 Life Before The Stroke
12:03 Dealing With Post-Stroke Deficits
17:44 Getting Back Into Cycling Again After A Stroke
23:59 Perispinal Etanercept Treatment Expectations
37:12 Perispinal Etanercept Treatment Initial Results
44:41 The Cost Of The Treatment
56:27 Perispinal Etanercept Treatment Honest Feedback
1:02:26 Possible Cause Of The Stroke
1:13:43 The Hardest Thing About The Stroke
1:15:52 Lessons From The Stroke
1:19:45 Being A Coach Recovery Coach
1:25:28 The Pseudobulbar Affect
Transcript:
Introduction – Perispinal Etanercept
Bill Gasiamis 0:00
Welcome to episode 320, of the Recovery After Stroke podcast. In this episode, I’m thrilled to introduce Dwayne Semple, who shares his incredible story of recovery after a basal ganglia stroke as a paramedic, Dwayne’s life was turned upside down when he experienced a stroke that left him unable to walk or move his left side. Through his determination, he’s found innovative ways to regain his independence, from local rehab to unconventional treatments like etanercept injections administered by Dr Tobinick.
Bill Gasiamis 0:36
Join us as Dwayne reflects on the challenges of stroke recovery, navigating life on a recumbent trike, and the hope he found through these therapies. This is a must-listen for anyone in recovery, offering insight, inspiration, and practical advice from Dwayne’s journey.
Bill Gasiamis 0:55
Before we dive into Dwayne’s story, I’d like to take a moment to talk about how you can support the podcast if you find these episodes helpful, inspiring or insightful, consider supporting the show through Patreon at patreon.com/recoveryafterstroke.
Bill Gasiamis 1:12
Your support helps keep the podcast going, allowing me to continue sharing these powerful stories that provide hope and practical advice for stroke survivors and their families, whether it’s covering production costs or helping spread the word to a wider audience, your contribution makes a difference, and I truly appreciate your support. Thank you for your consideration.
Bill Gasiamis 1:34
Dwayne Semple, Welcome to the podcast.
Dwayne Semple 1:37
Hi. Thanks for having me.
Bill Gasiamis 1:40
Pleasure. Thanks for being here. Tell me a little bit about what happened to you?
Basal Ganglia StrokeDwayne Semple 1:45
Two years ago, in August, August 28 I had a basal ganglia stroke, right-sided and it put me out of commission for a few weeks, To say the least. Went to the local hospital, spent seven weeks there, started a rehab program there. We have a central rehab hospital in Halifax, Nova Scotia, which is about an hour from me. I was unable to get in to the seventh floor, which is the stroke and head injury unit at the time because of covid. So staff and patients were developing covid fairly quickly. They’d shut down the unit and we couldn’t get in.
Dwayne Semple 2:33
So I started my therapy through the local OT and physio works at the at the local at the local hospital, so my left side was affected, unable to move my arm, basically at the time, unable to sit up. So I had to be very careful. You know that I wasn’t tipping over on. You still there? Sorry, okay, no, my screen went all blown here, and I apologize. Yeah, so left side affected, unable to walk, unable to to move my left side vision was a little bit blurry, nothing too bad, but I still maintained my ability to speak, much to some people chagrin.
Dwayne Semple 3:28
Because I’m a talker by nature, and so, you know, I have two older brothers, and they said, you know, we tried for 55 years to get you to shut up, but we are so glad you can speak so that, I guess that was a bit of a testament. Anyway, following the seven weeks in the local stroke unit, I got moved to rehab. I spent another eight weeks in the rehab hospital, learning to walk, learning to, you know, do what I could with my arm, and then I was released just prior to Christmas 2022.
Dwayne Semple 4:03
Since then, it’s been home therapy and a bit of work with occupational therapy, physio is kind of let me go now, because my walkings, you know, not great. I’m still walking a bit stiff legged, but, but still, you know, moving on. Things have been, things have been pretty good, recently, I guess if that’s where I should go now, on the 25th of June sorry no it was before that, It was, that was my last injection.
Getting A Perispinal Etanercept Treatment
Dwayne Semple 4:34
But I went to Boca, Raton, Florida, as you know, to see Dr. Tobinick about the perispinal etanercept injections, which I had heard from, you know, every source after you have a stroke. Whether it’s I have new tongue of bat or whatever, you know, urban remedy, people will start sending you saying, This is great for stroke.
Dwayne Semple 5:00
Yes, and this video did capture me a bit, and I know that it’s been, been widely viewed in other parts of the country, as well as, you know, across the world, because he has patients going there, from everywhere. I was a little bit, you know, concerned that it was snake oil sales when I started the research, and I spent, you know, a great amount of time thinking about it and researching it. And I’m a paramedic by trade, so I’m in medicine.
Dwayne Semple 5:33
And when we’re doing research, we always go to the in North America, at least, go to our our best sources, which are the New England Journal of Medicine, the Journal of American Medical Associates, and on and on. And that treatment is not something that, you know, highly recognized in any of these, in any of these journals. So I read the documents that I could find, which were, you know, the the manufacturers of etanercept, and, of course, Dr Tobernick studies that he had done himself, but that was about all.
Dwayne Semple 6:10
So that left me even less impressed. So I looked at both sides, the people that I could follow, who had success or felt they had success, and the folks that were dead against it, who said, you know that it is snake oil sales. And this guy just, you know, just doing whatever. And it was really one of the selling features was, I was watching one of your podcasts, and there was a gentleman, I forget if he was from Tasmania or somewhere, who had flown to the US.
Bill Gasiamis 6:40
New Zealand, Andrew Stopps.
Dwayne Semple 6:43
Yes and I was, you know, his account was honest, and so on, and I had researched it to that point where I was at the point of making the checkbox and saying yes. So I reached out, got, you know, an appointment for two injections and and from there I went. So it was, it was kind of your show that helped put me, put me over the edge a bit to go do it.
Bill Gasiamis 7:13
Before we talk about that other side of it. So I want to get a sense of the kind of work that you did beforehand. And you know your life and all the things that you were doing before stroke that were interrupted, and then, then we’ll talk about where you’re at now.
Life Before The Stroke And Perispinal Etanercept Treatment
Dwayne Semple 7:33
Sure so I’m a lifelong cyclist, so I would put on a number of kilometers every week. I enjoyed riding for charity and so on and so forth. So I spent some time, you know, mountain biking and and road cycling. As I said, I’m a paramedic by trade. I’m a paramedic manager, so I’d been working, you know, a fair amount through the summer. We’re short handed. We have offload delays and hospitals and all that sort of thing. And so, you know, there was some extra work going on, but, you know, fairly fit, felt great most of the most of the time.
Dwayne Semple 8:14
And, you know, have a property that I love. It’s like living at your cottage where I live, and I’ve been, you know, we’re enjoying life. And following, following the stroke. Of course, I’m ‘Oh, yeah’ the other thing I guess I should say, is that that to get away from work along with the cycling, I have a little mechanic shop in the back, so I do bike repair as well. So that’s my that’s my stress relief and my get away from work as well. So when I had the had the stroke, the one number, number, one thing I was thinking about was, oh my gosh, I’m not going to be able to do any of that.
Dwayne Semple 8:48
I’m not going to be able to go in and wrench anymore. I can’t ride two wheels. What am I going to do? So, you know, following therapy and getting out of the hospital and rehab and returning home, getting through Christmas, I started watching videos and and I had a number of people who were inspiring me along the way. You know, different, different folks who were checking in on me or or calling.
Dwayne Semple 9:10
There’s another cyclist friend who winter winter cycles, and he gravel bikes and all sorts of things. And he would send me little videos of places he was going. And I thought that was amazing.
Dwayne Semple 9:19
And just recently, I met him on the trail, and I had to get a picture with him and post it on we have an Instagram account, of course, and as soon as I saw my I wanted to post that, because he really kept me, my tires pumped up and kept me moving anyway.
Dwayne Semple 9:34
I couldn’t, I couldn’t imagine what life was going to be like, not being able to to ride and work, for that matter, like right up until now, and I’m coming to the decision, actually in the next few days, or whether I’m going to be able to really return to work doing what I was doing.
Dwayne Semple 9:50
So that’s another chapter we’ll have to talk about another time. But I was coming into spring. Last year to 2023 with, you know, trying to figure out what it was going to be like. And all of a sudden I realized that I could still, I think I could still cycle if I used maybe a recumbent bike.
Bill Gasiamis 10:16
Let’s take a quick pause here, but we’ll be right back with Dwayne’s inspiring story in a moment before I continue, I wanted to remind you about my book The Unexpected Way That A Stroke Became The Best Thing That Happened. It’s not just a memoir, it’s a guide on how to achieve post traumatic growth after stroke. In this book, I share not only my own story, but also those of other stroke survivors who turned their trauma into an opportunity for growth.
Bill Gasiamis 10:44
If you’re seeking hope, resilience and practical steps to improve your life after stroke, this book is for you. You can find it on Amazon by searching my name, Bill Gasiamis, or by heading over to recoveryafterstroke.com/book.
Dwayne Semple 10:59
I was watching I’m not sure if you know of Paul Pritchett or not, he’s a climber from your area who fell and had was head injured, and he’s been his story is very inspiring as well, and I noticed he was on a recumbent cycle at one point in time, so I started researching. Anyway, there was a local gentleman eight kilometers from my house. There’s very few recumbent trikes in the area, and all of a sudden this appears on on a buy and sell, you know? So I went out, gave it a try and bought it anyway.
Dwayne Semple 11:35
Just to make my long story longer, I ended up on three wheels. And I’ve been, I’ve been having a hell of a time ripping around on this trike, trying to inspire, you know, some other, some other stroke folks as well, but, but more so for me, because it’s my, it’s it’s been my thing, and it’s been my release for many years. So the ability to get back out on the on the road, even on three wheels, not two, but three. I’m enjoying it yeah.
Dealing With Post-Stroke DeficitsBill Gasiamis 12:03
Yeah so the deficit that you have, what does it stop you from doing? So how does it impact your body, and what does it stop you from being able to do, specifically?
Dwayne Semple 12:16
Well, when it comes to cycling, my my leg is weak. There are muscles that aren’t activated, and so my heel turns in and touches a crank arm on a bike, and I can’t pedal it without being clipped in now, having left sided stroke and being weak in my right arm, I can’t grip the hand grips of the bike. If I do grip them, I’m scared that I won’t be able to let go if I dump it on the other hand when I when I try, I can’t hang on for any length of time. My hand sort of just opens up and falls off.
Dwayne Semple 12:47
Now I haven’t tried it in a while, because I’m so used to doing the the trike thing. Now, my walking is limited the bit of the balance issue, and I don’t know it’s it’s not as much balance as it is. I don’t trust my left side and my my because I had been walking for the last two years with my knee locked. Basically I was walking and using my leg as a splint.
Dwayne Semple 13:13
As you know that that happens with those of us that that can get up and walk when we do start walking, that that becomes an issue. So I can talk about that piece later, but I’ve built up some great strength in cycling on that side. So walking, getting around isn’t an issue.
Dwayne Semple 13:32
I won’t say walking is an issue, but getting around isn’t an issue. I lost strength, of course, in my my left arm, so I’m very limited in what I can do. And I was, and I’m left handed, so I am not writing with my right hand. It’s, it’s hen scratch at best. Well, my left hand was pretty much hen scratch too. But if you ask any of my colleagues, but I, you know I’ve done, I’ve done pretty well with the exception of that. So everything I did, including brush my teeth, eat and write, everything was with my my left hand.
Dwayne Semple 14:02
Now, if I was playing ice hockey or throwing a ball or whatever, that’s all right handed, so none of that stuff was affected, not that I play a whole lot of ball and not that I’m playing ice hockey, but those are the those things I do, did with my right hand anyway.
Bill Gasiamis 14:18
So you’re fairly.
Dwayne Semple 14:19
Oh yes, yeah, no, go ahead
Bill Gasiamis 14:23
You’re fairly active. You were out on the bike, balance is a big deal, walking is an issue. Everything that makes you kind of comfortable being in the spaces that you’ve been in before is a little bit altered, a little bit not right. So it’s a little bit you have to find a new way to go about things.
Bill Gasiamis 14:46
Now, I love the fact that you found the three wheeler. Reason being is because when I have left side deficits as well. So when I first started riding my bike again after many years, after brain surgery, my left leg needed to be clipped in. Well, not necessarily clipped, but I could do okay with the stirrup on the pedal.
Bill Gasiamis 15:08
And then what was happening was I’d get to a stop where I’d need to put my foot out, and I’d go to put my left foot out and forget that it was in the stirrup because I couldn’t feel it. And then instead of putting my leg down, I would fall over, come to a stop and fall over. And then that happened about that happened once. And then one time, riding the bike in our central business district, there was some construction work happening in that.
Bill Gasiamis 15:45
We call them lollipop guy with the stop sign road stopped me and said, Get off the bike. You’re going to have to walk it, just for here, because the roads closed. And exactly the same thing happened. I went to put my foot down, and it didn’t come out of the stirrup, and I fell again. And then I got sick of it, because what was happening is my foot was fatiguing very my left leg was fatiguing very, very quickly.
Bill Gasiamis 16:16
Even though it could sit on the pedal, it could do the movement. And sometimes my left arm, my left hand, would let go of the handlebars as well, and I’d find myself, you know, kind of in the worst scenario, letting go of the handlebars because my hand didn’t realize that it needed to continue holding on.
Bill Gasiamis 16:40
It would just kind of forget to so it was by chance, somebody mentioned that an older guy who was riding a bike mentioned that he had bought an electric battery operated bike that supports the pedaling. It doesn’t pedal for you. It just gives you a little bit of sort of, what does it give you, gives you a little bit of a support in that peddling motion.
Dwayne Semple 17:08
It’s an assistant. It is yeah.
Bill Gasiamis 17:09
Yeah, assistant, and then the foot wasn’t fatiguing. When I was doing that pedaling, my left foot wasn’t fatiguing. And I could ride for an hour. And therefore, because I wasn’t putting in so much effort, peddling, my left arm was also not fatiguing, and I could stay on the bike for longer, and I didn’t need a stirrup, which meant that when I needed to stop and put my foot down, it would work as per normal. And it was such a relief to be able to get back on on a bike and get moving.
Bill Gasiamis 17:11
And I know there’s a lot of stroke survivors who have found the three wheeled bikes, and that has enabled them to feel like it felt to be out and about, even though you’re sitting on your butt and you’re kind of reclined rather than upright in a bike, it’s they get the same sense of satisfaction being out there.
Getting Back Into Cycling Again After A Stroke
Dwayne Semple 18:06
It’s actually a better sense of satisfaction in some ways, because I see a lot more now sitting back and I’m able to look around. I don’t have to worry about potholes while I still have to worry about potholes, but I don’t have to worry about getting chucked off my my bike as easy and to I guess I should also preface this with the discussion around how I last year, I was in a ride with a group of people, and I was riding with a doctor friend of mine, and we were riding a recumbent trike, and we were kicking ass, if you will.
Dwayne Semple 18:38
When we were climbing hills, we were passing all our counterparts on on bikes, on bicycles. And they had, you know, 29 inch wheels, 2700 C wheels, and we were traveling on these 20 inch wheels, like is on my track. And you know, Mike would reach back, and I’d High Five him, and we would pass all these folks. And what I found out was he had a hub motor in the back. It was so quiet I didn’t even know it was there.
Dwayne Semple 18:59
And so he would turn it on as we were going uphill. So when I get home, I bought one, so I put a hub motor on mine. The thing will do 60-65, kilometers an hour. Now, don’t tell anybody, it’ll go really fast, but I don’t use it.
Dwayne Semple 19:13
I’m only using it for hills. And so I’ve had a lot, you know, I’ve done some charity rides already this year, and and, you know, I’m doing, you know, 80 100k a day kind of thing. I’m not peddling that every day, but when I do the rides, I’m doing that, and the electric assist has been such a great help. And I’m able, you know, to feel like I’m still part of the team and part of the game, because I can keep up and and I can ride along people, and I can assist the people who are slow, like, kind of one of my jobs was always sweet.
Dwayne Semple 19:40
I always want to take care of everybody and make sure they’re going to make it. Because everybody, everybody finishes right and, and so every hill that people need assistance climbing, and that sort of thing, I was always involved in that, and, and now I can do it again. I didn’t want to feel like I was the one they were helping. And this has allowed me to allowed me to do that. So.
Dwayne Semple 19:59
So this weekend, coming up next, Saturday, Sunday and Monday, we have a paramedic ride in Bridgewater, Nova Scotia, which is about two hours from here, and we’re going to Cloverleaf, and do probably read around 100k a day for the three days. And so I’m really looking forward to to getting together with my with my colleagues to do that.
Bill Gasiamis 20:19
Sensational, I love it now with the etanercept, the snake oil salesman stuff is interesting. I just watched the interview yesterday. The very first interview that I ever saw about it was done about nine years ago with a reporter from 60 minutes Australia. He traveled up to Dr Tobinick’s practice, he met some stroke survivors.
Bill Gasiamis 20:45
They had conversations before, they had conversations after, and they reported on two good outcomes during that particular 60 minutes episode. And then they’re interviewing Dr Tobinick, and Dr Tobinick is giving his feedback on what he’s able to achieve and the things that people have experienced. And then at the same time, he’s speaking to stroke survivors, and they are reporting back amazing outcomes.
Bill Gasiamis 21:15
And then he goes to a neurologist who is the opposing view, and he does talk about it as being snake oil salesman kind of things. And the reason he does that is not because there hasn’t been results, is because there hasn’t been studies done that he can refer to where he doesn’t have to take the word of Dr Tobinick for it. And it’s not that etarnercept isn’t something that hasn’t been around forever.
Bill Gasiamis 21:49
It’s off label, which means that it’s not patented anymore. And as a result of that, there isn’t an ability for anybody, as a pharmaceutical organization, for example, to own the rights to etanercept on their own. And as a result of that, nobody’s spending any money so that they can flog etanercept to the rest of the world and say ‘Hey, use this product for everything, like they do with other medications that are brand new, for example, that they invented.
Bill Gasiamis 22:20
So I think it’s a little bit dishonest when somebody does a negative version of about a product where there’s no evidence, because nobody will fund the evidence. I think it’s a little dishonest, like until somebody has funded the study, and that has been proven one way or another. I don’t think anybody should have the right to call out somebody no when the proof should be in the pudding.
Bill Gasiamis 22:58
To an extent, you know, evidence of somebody actually using it and walking is evidence like it’s legitimate, even though it hasn’t been written down and put in, put into a study. And when you’re a stroke survivor, and regardless of what you’re recovering from, some people need hope instead of having that hope diminished. And that’s the part that isn’t spoken about enough.
Bill Gasiamis 23:30
The ‘Why is this thing considered by some to be snake oil? That’s the part that isn’t spoken enough. It’s not because it hasn’t worked for some people, it also hasn’t worked for some for some other people. So that’s important to note. It doesn’t work for everybody, and it’s usually the type of stroke and the deficits and whether or not that person has any recoverable areas in the brain.
Perispinal Etanercept Treatment ExpectationsDwayne Semple 23:59
That’s correct. And Dr Tobinick is really good about when you have your first conversation with him, he is very upfront. He doesn’t say this is going to work for you. I’m selling you this wonderful product, and I’m going to stick a needle in your neck and you’re going to walk again. He by no means does he do that. He gets your medical record ahead of time, and he tells you that, you know, he said, Okay, where your stroke is? We’ve had some luck there. We’ve had some we’ve had some good luck.
Dwayne Semple 24:23
He said, I would expect this is what’s going to happen. You’re probably, you know, going to get, you know, sensation back and you know in your limbs, potentially, if you don’t have it, you’re going to your stroke, pains are going to go away, hopefully your your specificity lessens or goes away. We would hope. But I’m going to tell you that probably whatever you’ve gained in the use of your arm and shoulder right now, you’re probably only going to gain 40% of what you’ve already gotten, and you’re probably, you know, so he was, I felt very it was very honest.
Dwayne Semple 24:55
He didn’t give me any high hopes. He just gave me some stuff to think about. He said I was young, I was a good candidate, and I didn’t see any song and dance about it. He talked about him that he didn’t talk about it the patient specifically, but he talked about a patient who was from the area that lived in, in a place that was, you know, nearby me.
Dwayne Semple 25:18
And he and I are the only two so far that have from our, you know, from the province of Nova Scotia, that have gone now, there is, I know that you’ve talked with a friend of mine, Steve, who is, who is on his way this weekend or next weekend.
Bill Gasiamis 25:31
Steve Lawrence.
Dwayne Semple 25:32
Steve Lawrence yeah.
Bill Gasiamis 25:33
He’s going live on Monday, like in couple of days.
Dwayne Semple 25:38
Awesome, I will, I will certainly tune in. He’s got a great story. And he saw a comment I made, and it was probably your podcast that I had made a comment on. And he must research everybody, because he tracked me down. And I was just on my I was actually at the airport on my way home from Florida at the time, and so he came to see me. He does. He lives about an hour away from me. So he came and we met at a park and had a great walk with his dog and his wife, and had a great chat about it.
Dwayne Semple 26:14
And you know, I was very honest about what happened for me and I told a little story that I’ll tell you about another gentleman as well. But Tobinick is very it. Was very honest about it. And he also said, you know, 2% of the people that we have have zero effect. There’s there’s absolutely nothing. He said it goes from something very minimal, like numbness and tingling going away, to people that get up and walk more steps than they’ve ever walked and and so, you know, all of that combined was really ‘the Okay, Sign me up.
Dwayne Semple 26:46
So we reached out in February. I hoping, hoping that we would get to go to Florida in February, because it would be nice and warm there. And it was cold here at the time, but we went there. It was 30 degrees here. It was 42 there for a week, so it was very warm. We we went to Tobernick’s office for the first assessment. And they do, you know, the here, I’m not sure what they do in other countries, I really don’t know, but they do, you know, the Mocha test and a bunch of different things they do, balance tests. They get you to walk, and time you’re walking, and that sort of thing?
Intro 28:57
If you’ve had a stroke and you’re in recovery, you’ll know what a scary and confusing time it can be. You’re likely to have a lot of questions going through your mind, like, how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse? Doctors will explain things, but obviously, you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery.
Intro 29:26
If you’re finding yourself in that situation, stop worrying and head to recoveryafterstroke.com. Where you can download a guide that will help you. It’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website now recoveryafterstroke.com, and download the guide. It’s free.
Dwayne Semple 29:59
And then following the injection when you go for your second assessment. So I went for a second assessment, and they checked to see what your improvement is, and and they do some of those measurements again now, because cognitively, I was pretty good. As you can see, I was, you know, I don’t speak terribly. I had no real deficits that way, so it was hard to gauge a lot. But there were some things when I went for the second assessment.
Dwayne Semple 30:30
But anyway, following the first assessment, I went the next the next day, and had the had the injection. I’m I’m sure you know all about the injection. They do a paraspinal injection between the fifth and sixth vertebrae, and then they tip you upside down for seven minutes.
Dwayne Semple 30:48
I’ll tell you in seven seconds after I had the first injection, I had numbness that you know, started my set and it went left to my earlobe, and it only moved an inch, but it moved enough so that it cleared my tongue so I can taste again on the on the left side of my tongue, except in the very rim of it, because I was biting it all the time.
Dwayne Semple 31:11
And that got better, I could taste again. I knew that sensation when it changed. It was just like this warm feeling in my tongue. My tongue sort of got got better. I didn’t really notice anything. He said, can you put your arm up? Well, I said, That’s unfair, because I’m laying upside down. If I pick my arm off, it’s going to fall over my head, and you’re going to take credit for that where it’s where it’s gravity.
Dwayne Semple 31:34
And he kind of laughed, and they sat me back up again, and instead of having 50 pounds of weight in my arm, I had 25 now I still wasn’t moving at any, better the pins and wasn’t pins and needles that I had, I was a bit hypersensitive, and I the only explanation I can give you that would make you understand is that instead of, you know, when I when you touch Velcro, it felt more like thistles and thorns.
Dwayne Semple 32:02
It was a lot sharper, so the feeling was more intense, or it was a bit hypersensitive. If it was hot, it was fairly like, really hot, reasonably hot would be really hot, and cool would be cold, but ice didn’t, you know, I could tell the difference in temperatures, but so now it’s just numb, It’s not hypersensitive like that, the sole of my foot. By that night, the sole of my foot, I became ticklish again. So I’m, I’m jumping again. I was a ticklish dude to start with.
Dwayne Semple 32:20
So if I fell asleep with my hands on my abdomen and I twitched in the night, you’d have to peel me off the ceiling fan because I jump. So that might not be a good thing, but it’s a, it seemed like a positive sign, right? So we said, How about your stroke pain? And I guess I should mention that my trapezius muscle into my deltoid, down my my lats, down my back and around my shoulder blade. I had this two or three out of 10 achy nai stroke pain, and a lot of people have it.
Dwayne Semple 33:10
I didn’t realize that’s gone, there’s none. And so I was quite excited about that when I realized it was gone, because that was a little something like throughout the day, if I had a long, hard day doing something or doing nothing, and that was achy. It would make me a bit irritable, and I didn’t care much for that. I like to be irritable. I like to be a happy guy, and, you know, doing my doing my thing, but that and that, and that’s maintained since the very first injection.
Dwayne Semple 33:39
Anyway. What else so my my gait changed, I felt something activate differently in my I guess my lower back, or into my glutes. And the the walking stiff legged had changed to me being able to to kind of walk normally again. Now I’m still walking a little bit stiff legged, but I but I’m able to maintain an almost normal walk.
Dwayne Semple 34:06
It feels like I’m walking like a chimpanzee when I’m doing it, but my wife videoed me in a mall the next I don’t know if it was the same day or the next day after the first injection, and she posted it on on Facebook or Instagram and send it to family, just to say, hey, look what’s happened here, where I’d been, where I’d been walking, totally different.
Dwayne Semple 34:28
So that had changed. My gait is shorter, but I’m walking faster, so it feels better. What else? She says, my face looks better. I knew I noticed a facial droop on this side, but it’s not as pronounced now. And I was always rubbing the side of my face because I didn’t know if I was drooling or I felt like I was. I’m not. I’m hardly doing that at all anyway.
Dwayne Semple 34:55
And the other thing, these damn things so my readers. I seldom put those on now, I used to have them on all the time, if I pulled my phone out, or if I looked at a meal, if I was reading a magazine or reading whatever I needed to have these right beside me.
Dwayne Semple 35:11
And I put them away. And I have a little a little bag that I carry with my wallet and stuff in it, and I tucked my glasses in it now, and I forget sometimes to even take them out when I’m reading. And so I didn’t even realize that was a thing that.
Bill Gasiamis 35:30
And that was not related to the stroke. That was just eyesight.
Dwayne Semple 35:33
No, that was eyesight, I had started wearing readers probably a year before I went to my Eye-Doc, and she said, She said ‘Your vision is 20/20, what you need is more light. And I said, No, what I need is glasses. So she said, I’ll write your script for readers, that’s all you need. So I went to one of the local shops and just bought some readers, and now I have them laying everywhere. But I did find that once I had light, it made a big difference, but after the stroke, being in hospital, as long as I was, I always had these glasses on because I was always reading.
Dwayne Semple 36:10
I was always doing trying to keep my brain occupied. And the unfortunate thing is, always spent a lot of time on my phone too. And I, you know, criticize people for spending way too much time on their tablets and their phones. But here I here I am doing it. But anyway, that seems to be another, another benefit I had. I had a number of benefits, so the fatigue is the other thing.
Dwayne Semple 36:32
So I still get fatigue, but not like I did before. I would go out to my my bike shop and tinker around in the mornings until noon, 1230 come in, make lunch for my wife and I, and then I’d rest until, say, two, and go back out for another hour or two, and then come in and be in, be fatigued at dinner time.
Dwayne Semple 36:54
Now, I don’t spend the hour at noon doing anything. I barely even come in to make lunch. I just I’m there, you know, morning until evening and and we do dinner and and watch a little TV and go to bed. So my my stamina seems to be a little better that way. So I’m appreciating that as well.
Perispinal Etanercept Treatment Initial ResultsBill Gasiamis 37:12
Fantastic. So how many injections did you have?
Dwayne Semple 37:16
I had two. As I said, I went back in for a second assessment. Five days later, after the first injection, my scores had improved. My times were faster, my speed was faster, walking now this is them timing it. So if you want to be, you know, pessimistic and say, Well, you know, they, you really, you know, they just compare the times and add a couple of seconds, or take a couple of seconds off whatever. I don’t know, but it all seemed on the up and up to me.
Dwayne Semple 37:46
And I mean, and if I go back and talk about Steve again for a second, Steve was very, very critical about he wanted to be very critical about it, because he wanted to make sure he’s doing the right thing. And I’m like, I can’t tell you. I can tell you, you know, here’s what I what I did, and what I’ve been doing, and how this is how this has affected me.
Dwayne Semple 38:05
So following the second assessment, I went in for my injection. Now, if I may, I want to tell a bit of a side story, because while we were waiting to go in on the second day, or sorry for the second assessment, they wheeled a gentleman out who was in a wheelchair, who was atrophied on his right side in his wheelchair, head down, a facial droop, you know, obviously a stroke. I know the signs very well from my from my experience, of course, now, but for my profession as well.
Dwayne Semple 38:40
I speak to everyone. So I spoke to the gentleman, and he he was telling how he had had his stroke eight years before, how he was hoping that he could, he could he could walk, because all he could do is take a couple of steps to get, you know, to the commode, to the bed, to whatever he had moved from a Minnesota, to to Phoenix, Arizona, because he was so cold the last eight years following the stroke and so on. But anyway, he said, ‘Oh yes, we he wasn’t able to really use his arm a whole lot, because when he would move, it going to spasm, and he basically did it there, and it spasmed.
Dwayne Semple 39:21
So fast forward to the next day, when I was going in for my second injection, and he would have been there for his first his wife wheeled him out while she was waiting for their cab to come and pick them up. And he is his hand in the air, doing this the right hand touching one finger.
Dwayne Semple 39:38
He was he was doing that and I was amazed. So I said, did you get up and walk? And he said, I took about four steps. And so I was really terribly impressed with with that. And so happy for him, because he was elated. His face was like mine, like he was just smiling, and His face looked normal, and and so on. And his wife was was ecstatic. So hopefully that’s all gone well for. Him, but if that is what I saw like, I shouldn’t put it like that, because that is what I saw.
Dwayne Semple 40:06
But if, but if he was in as bad a shape as he was to start out with, and had all of those deficits and that happened, that’s, you know, that’s miraculous at eight years, but that’s fantastic for him and and you know that that was a bit more proof for me that things, things were, you know, going in the right direction, and that this wasn’t just, you know, just some voodoo medicine that was happening.
Dwayne Semple 40:35
Following that sort I digressed there, but I wanted to tell that story because that, of all things, even for the great things that had happened to me while I was there, that was a great thing for that gentleman. And I was, I was really impressed by that.
Dwayne Semple 40:49
Anyway, we went into the second injection. There was another gentleman there from New Zealand, I think, at that day, ahead of me, and they were making a lot of him because of the distance he had traveled. And so we waited a little bit, we went in and they, I talked with, with the doc again, about how things are going. And he did, he did the videos that he does I and so I’m online now. I’m youtube famous, my few minutes of fame on Tobinick’s office. But he, he asked a number of questions and did the second injection.
Dwayne Semple 41:30
And I didn’t feel anything, I didn’t feel a damn thing, and I was a little bit disappointed, but as a as I sat there talking to him, I could feel something that there was like something happening in my shoulder, and I wanted to play around with it and see what it was, right? So there’s a movement that I couldn’t do before, and that’s going from from my arm being up lateral and moving it straight out, that I couldn’t do, and now I can do it. So there’s a muscle that was activated but, but that was kind of the only thing following the second injection. And so, you know, for me, I feel, you know, very lucky.
Dwayne Semple 42:09
I’ve had some great support. I’ve had some fantastic, you know, fantastic support from friends and family. My wife is absolutely wonderful. I can’t say enough about all of the all of the hard work that she’s done. And she she sat by my side 12 hours a day for seven weeks while I was in one hospital, and was there for me the whole time. And was, you know, the biggest inspiration for me to keep to keep moving forward. And she keeps pushing me. And I’m, you know, I’m feeling great right now.
Dwayne Semple 42:39
If someone were to ask me if, if this was the thing they needed to do, I would say, I don’t know you need to do what’s right for you. Here’s what it did for me. And you know, I spent a lot of time trying to make up my mind, and I studied every little bit. I read some stuff that was negative, that made me feel bad about it, and there are things that I watched that I think are miracles, because I’m not sure that it actually, it was the power of the human body. I think that did it for some folks.
Bill Gasiamis 43:11
You think it was the power of the human body that did it for some you think it was a little bit of a placebo, perhaps for some people.
Dwayne Semple 43:18
Some people placebo effect, I’ve, I mean, I’ve, again, in different studies and different issues in medicine that I’ve seen over the years, I’ve seen people, you know, cured by placebo. You know, people who were thinking they were getting pain medication that we’re getting, you know, saline.
Bill Gasiamis 43:39
But in this case, there’s no placebo, there’s the actual injection. The placebo doesn’t really apply surely.
Dwayne Semple 43:47
No, no, but that’s the thing. And I’m a believer. They convinced me, but they also convinced me that it doesn’t work in everybody, so. You know the potential was there, so I’m and I went fully expecting to be disappointed. I know I shouldn’t say it like that. I was prepared to be disappointed, let me put it that way, that I wasn’t going to be I was willing to take the risk. So, yeah, I’m glad I did. I can’t say that I’m unhappy in any way, shape or form, other than it was 40 degree weather, and it was a hot 10 days while we were there.
Bill Gasiamis 44:28
40 degrees celsius?
Dwayne Semple 44:30
Yes, yeah.
Bill Gasiamis 44:31
My gosh, over 100 Fahrenheit. And what did it cost you?
The Cost Of Perispinal Etanercept TreatmentDwayne Semple 44:41
It was $8,400 US currency for each shot. So Canadian, the trip cost me 30,000. That would have cost me $30,000 Canadian, so that’s, you know, that’s my hotels rent, you know, we had an Airbnb, so place to stay, food to eat, transportation for my wife and I, and then the two injections. So it would have been about $12,200 per injection, Canadian, I think, is how it worked out, somewhere in that vicinity.
Bill Gasiamis 45:17
Right, It’s a lot of money, in your case, money well spent. And that’s the challenge that other people sort of go through, is that, you know that, why is this guy charging so much for an injection that’s off label and blah, blah, blah, you know, there’s a lot of conversation about that, and I’m not sure whether that is, whether there’s any reason to have that conversation or not. The guy is doing amazing things, He’s has to be able to charge an amount of money that’s going to make it worthwhile.
Bill Gasiamis 45:59
That is why nobody else is doing it? Because perhaps they don’t see there as being any money in it. He is improving people’s lives. And I imagine he would have a lot of people who haven’t had a good result struggle with that, and I imagine that he’s struggling with, not struggling, but he would have people that are going after him, you know, at risk of people going after him legally and all that kind of stuff. So there has to be a buck in it, otherwise nobody.
Dwayne Semple 46:35
Wouldn’t be worth it. And he has, you know, he has a number of staff. So he is, he has probably three or four people that that are office staff, and then he has another half a dozen, at least, assistants that do the assessments and things for him. So, you know, he has to have, I would say they’re now, I didn’t ask everybody what their their jobs were, but there were occupation I know that there were two occupational therapy folks there, as well as as well as sort of residents that were working with him.
Dwayne Semple 47:06
One girl who had been working with him for a while that was going off to back to school to get her doctorate. And there was a another girl who had just come in from Brazil, who was had studied as a nurse, nurse practitioner. So those were the, you know, kind of the limited number of people that I talked to while I was there, but I pretty much had the same, the same team that worked with me, excuse me, during the two injections.
Bill Gasiamis 47:34
Yeah. So it’s not one guy on his own in a clinic just taking people in and injecting them, and then out of there.
Dwayne Semple 47:43
Sending them on their way. Yeah, no, excuse me. It does feel kind of assembly line like, but he only hit yes. He has six people a day, excuse me, and it takes about an hour, like we were there, probably two hours the second day and the second injection.
Dwayne Semple 47:59
But he wanted to talk about where I lived in Canada, like because his other patient, that was from Nova Scotia, lived lives only 20 minutes for me. And so he has a world map that sits behind you, and he has pins in it. And the pin, each pin is one person, but if there’s a cluster people come from a certain area, he puts more than one big pin.
Dwayne Semple 48:20
It puts a bigger pin in to demonstrate, you know, 10 people or whatever. And so we were talking about the area that we live in, because this area, we have the highest tides in the world in this area called the Bay of Fundy and and they it’s kind of like white water rafting on it when the tide comes in in this in the summer, from, you know, the end of May, until September, into September, people ride these waves when they come in.
Dwayne Semple 48:45
So they go right from right from sea level, right from the ground, as the water’s coming in, picks these rafts up and things, anyway, we had this great conversation about about the about the the title, or rafting and things that happened here. And he’s very interested, you know, and in the the seafood that they they get out of that area, you know, the clams and oysters and mussels and that sort of thing.
Dwayne Semple 49:08
So we had a great conversation, at one point, I’m thinking, this guy just wants to talk about where I’m from. He’s not interested in sticking a needle in my neck at all, right, so, but he was, he’s very personable, and he was really quick down to earth.
Dwayne Semple 49:22
You know, he’s even even dug out a few of the studies and, you know, pictures of things when they did, when they were testing into intercept on lab rats and things and the folks that were trying to disprove his his theories, and actually proved him correct by making their own mistakes, according to him, in the videos and things that he was showing me. So I thought that was, you know, there was, it was.
Bill Gasiamis 49:47
In the 60 Minutes interview they do a functional MRI, I believe, of one of the patients who has the injection before and then one of the patients after the injection, the same patient after the injection. Action. I’m not exactly sure how far down, but they do see a larger amount of activity in the brain after the injection, and it’s not immediately after, it might be a few days later that the person has the injection.
Bill Gasiamis 50:18
So they they have got a lot of evidence to show positive outcomes, not to mention the hundreds of videos on the Institute of neurological recovery YouTube channel now, which are pretty compelling as it is, so, I would encourage people who are listening and watching to do their own research and make up their own Absolutely, and reach out to people who have been been there before, and get some feedback. And also see, I’m struggling to find people who haven’t had a good result so I can interview somebody like that as well.
Bill Gasiamis 51:10
They’re probably I know them, they may not be as enthusiastic to talk about their experience. So that would be good if I could find somebody in that situation that would like to talk about it so I could also pull forward a balanced view of this, but at the same time, I’m not going to hesitate interviewing anybody who has had a tennis set, because the whole purpose of this podcast is to bring people to solutions, amongst other things.
Bill Gasiamis 51:38
And that’s what I want. I wanted. I wanted people to come to me and go, Hey, there’s this thing, and you should look into it, because somebody else has had a good result and somebody else hasn’t had a good result. But some, there might be some hope there.
Bill Gasiamis 51:53
That’s it. That’s what we want to do now. I appreciate the difficulty in funding such trip, $30,000 Canadian dollars is a lot of money, you know, to come by. And I would say that if somebody is very committed to doing that, there’s funds. There’s way to to raise funds as well. You know, there’s the, what do they call them these days, those GoFundMe campaigns.
Dwayne Semple 52:26
Oh, GoFundMe pages yep yeah.
Bill Gasiamis 52:27
Yeah, etc. so there are ways that you can raise the money and you can get creative. And if you really want to go and and try it out, I should, I would encourage you to do the work and find out for yourself. And you know, ring the office, go and see Tobinick, have the initial assessment, do whatever you need to do to feel convinced one way or another, whether you should go after it or not. So I’m really glad to speak to you Dwayne.
Dwayne Semple 52:56
I went to the YouTube channel, and I went through a number of videos, and I looked for anything, and I know that they could control it as well. They could, probably snip out anything that that people put in that’s negative. But I found nothing and the one there was one person that had a very inquisitive question, and I thought maybe they were being backhanded.
Dwayne Semple 53:19
So I reached out to them to see and they were like, No, my question was, and I said, well, I want to do the proper research, and I want to find out if, you know, if someone has had a bad experience, what it is, because there’s no risk like there.
Dwayne Semple 53:37
I’ve not heard of anyone who’s, you know, had a seizure while they were on the table or had another stroke, or anything of this nature, because that was a concern. And when I talked to him, he said, No, we’ve had nothing like that here. And so everything seemed very risk free. And so I went, you know, when I went to my physiatrist, when I talked to my occupational therapist, when I talked to my own physician, they all looked at me like I had two heads.
Dwayne Semple 54:00
But when I gave them my compelling evidence, which was what I did, I studied it, they didn’t all that they they basically kind of heard about it, but never really did anything of, you know, like never, looked into it, a whole lot themselves. They all said, Is there a risk? And I said, No. And so the I said, the only risk is losing my money by going and not getting, not getting anything out of it. And so at the end of the day, I did. I made the risk, I got some benefit, and I feel good.
Dwayne Semple 54:36
So, you know, I win in that case. However, you know, maybe the next person that goes and doesn’t get as much of an effect, or no effect, or yet, maybe they get up and walk again and, you know, and if that’s the case, then, then I am absolutely all for it. I you know, I said everybody. Was, reaching out with all their home remedies and so on.
Dwayne Semple 55:04
You know, using psilocybin, like eating mushroom gummies, eating cannabis products, you know, all of those things are, are shown to help people in some way, shape or form, different herbal teas, and all these other things that people were pushing, but none of that stuff, any of the stuff that I tried, didn’t help me nearly as much as this did And would I pay, you know, would I pay $30,000 for some magic mushrooms to help me concentrate better.
Dwayne Semple 55:44
I don’t think so, but I certainly paid 30 grand to do this. So, you know, I but again, I did that with a lot of support. The money was mine. I’m a bit of a proud guy, and I didn’t put my hand out at all, but I did also I had some acute illness insurance that paid out when I had the stroke, and this was, this was what it was for. So I’m happy that I had that. If I hadn’t, I might have second guessed how this all went. But even even my financial people were like, there’s no risk to your health. It’s only money man, go do it.
Perispinal Etanercept Treatment Honest FeedbackBill Gasiamis 56:27
You only live once. Man, I completely agree with you. Tell me about like, on a scale of one to 10. If one is zero, nothing happened. It’s terrible, and 10 is amazing. The most amazing things happened, and it’s fantastic. Go for it. On what’s your experience? What would you say your experience of the positive outcome? How would you rate the positive outcome, from one to 10?
Dwayne Semple 56:54
Well, if, if you were to say, nothing happened and obviously, 10, I’m cured. This would have been maybe a five, but the but the experience itself, for getting rid of the pain and changing some of the things and making what I’ve got left for life, which is hopefully another 40 years bearable, right? I’ve got a better quality of life because of it. You know, it that that ranks a little higher, that ranks, you know, that ranks up in in a 9 or 10.
Dwayne Semple 57:25
But that’s a personal view, not, you know, from from where I was to where I am, knowing that, you know, I had no, I had no expectation that I was going to start throwing a baseball or something with my left hand or playing the piano.
Dwayne Semple 57:37
Oh, wait, I never played the piano to start with. But that would have been really amazing. However, I, you know, I’m really happy with what, with, with how it went. I could I, you know, I could be walking normal, and I could be, I could be, you know, have all my movements. I could be back on my two wheels and, and, you know, living life carefree, that wasn’t what I expected. That wasn’t what I had studied that would happen and and, you know, you know, there were some small miracles that happened, and I certainly appreciate it.
Dwayne Semple 58:09
I appreciated the candid, the candidacy that that he had, Dr tobernick with me about what, what potentially could happen and what may not happen, and and you know, here I am happy, happy and willing to to support others, and I’m doing this. I’m doing that every day, so.
Bill Gasiamis 58:33
Yeah, and you’re willing to talk about it and share your story. And that says a lot as well. So what about how long has it been since the injections? Now, what’s the time that’s elapsed?
Dwayne Semple 58:45
25th of July. So, you know, we’re, we’re about a month and a half now-ish, kinda, yeah, I guess about a month and a half.
Bill Gasiamis 58:55
Is there any discussion or understanding about whether or not the the the results that you got wear off or continue to improve over time. What’s the longs of crisis?
Dwayne Semple 59:10
I certainly asked that question. And, you know, they say some folks that had their injections 12 years ago have not had any fallback. There was, there’s no returning symptoms. Others had, you know, fall a month following, we’re back for a second injection or, you know, had issues pop up. But on the most part, a lot of people have, have had no, you know, that had positive results, have had no recourse, like, nothing’s come back.
Dwayne Semple 59:43
Although some people, you know, of course, have secondary strokes and that sort of thing following. So again, they were pretty honest about all of that as well. They, they, you know, they, they basically tell you, now you need to, you need to this, this, you’ve had positive results now. It’s up to you to maintain your health, right?
Dwayne Semple 1:00:02
So don’t start smoking again. Don’t like, I wasn’t a smoker at the time, for sure. But you know they’re like, because, because you had a stroke and you haven’t smoked in six years now that you can, you know, move your arms again. Don’t start putting cigarettes to your mouth. You know that that’s sort of the thing, that they’re that they’re that they’re they’re telling you, you know, take your medicines, stay healthy, eat good food, right?
Bill Gasiamis 1:00:25
Personal Responsibility. It’s really, definitely, absolutely necessary for somebody to take action to prevent themselves from having another stroke and also to keep the gains that they have received achieved. It would be terrible for somebody to go through all of the trouble that stroke has created, have an injection, recover, and then start in bad habits again.
Dwayne Semple 1:00:56
I’ve never, you know, I I’ve been a paramedic almost well, I have been a paramedic for 40 years. I started when I was young, back in the days when funeral homes and it ran ambulance services, I never once had a patient say to me, geez, I wish I had to work harder. You know, I’ve always had a lot of people say to me ‘Boy, I wish I had taken better care of my health.
Dwayne Semple 1:01:17
Right? You hear that all the time. And so for those that don’t, and I was one of them. I mean, you know, when I went into management, I was eating, eating, you know, fast food for meals and things at meetings and whatever, not exercising, stressed out, go home and go to bed instead of going for a walk or whatever. I gained a lot of weight. And I had comorbidities. Both my mom and dad had comorbidities, you know, heart and heart disease, strokes.
Dwayne Semple 1:01:44
My mom was a brittle diabetic, and so I developed diabetes in 2020 during covid, I was taking oral medications and trying to keep my sugar down with diet and high blood pressure had set in.
Dwayne Semple 1:01:58
I never had a high blood pressure reading in my entire life until 2020, and so there’s two, two big risk factors right there. And no doubt in my mind that that those were certainly the major contributing factors. You know, the the diabetes and the high blood pressure and my stress level. Of course, working in emergency health services. Is a big thing. So.
Possible Cause Of The StrokeBill Gasiamis 1:02:26
What was the underlying cause of the stroke?
Dwayne Semple 1:02:31
They didn’t really say a whole lot about what it you know, there’s a lot of what could be’s, but I will tell you that my physiatrist and my OT my occupational therapist are both. I go in. I just had a meeting on Friday with my, my physiatrist and I meet with my occupational therapist this coming Monday, and we’re going to discuss my return to work. And they don’t want me to go back to work.
Dwayne Semple 1:03:01
They want me to finish out on my long-term until my retirement, and go that way. They figure if I go back with the high pressure that I have in the particular job I have, that chances are I’ll probably have another stroke. And they don’t want that.
Dwayne Semple 1:03:20
They said, I’ve done a lot of work to get back on my feet and and, you know, try and inspire others to do the same. And I feel really good about that. But, you know, I also want to feel as and I’m sure you know what I’m talking about, you want to feel like you’re a productive member of society.
Dwayne Semple 1:03:40
You don’t want to lay down and die, and I don’t want to be a guy who gets up in the morning and, you know, goes to the coffee shop and sits around with a bunch of guys 10 years older than me who’ve all retired or whatever, and and have my coffee and tell my lies and go back home and read the newspaper like I want to be productive.
Dwayne Semple 1:03:57
I really, really do. So I’ve, you know, I volunteer with a number of groups right now, and I’m still writing, and I have another young chap who was a bit of a superstar here, and he was in a bad accident a number of years ago in 2020, I guess it was. And then while he was in when he had his accident and was unresponsive, he had a stroke. And so he and I walk and talk and move very, very similarly.
Dwayne Semple 1:04:31
And so his friends were a little concerned about him, because, you know, this is a guy that’s been famous since he was 16 years old. He only lives a few kilometers from me, so I go pick him up and take him out for coffee now, because they were concerned.
Dwayne Semple 1:04:46
So we go do coffee and things and exercise together and whatever. So that’s given me a bit of a purpose, right to to kind of help him along. So maybe someday you’ll get to interview him. That would be, that would be quite amazing. He’s an interesting character.
Bill Gasiamis 1:04:59
Yeah. Why not? So what’s it like being the patient instead of the support?
Dwayne Semple 1:05:05
For the first for the first time? Right? So I was 55 years old when I had my stroke. It always talked about retiring at 55 but that’s not the way to go out, and I had never been admitted in hospital myself, ever. I’d been in for stitches. I’d been in for coughs, colds and that sort of thing, you know, X rays, ECGs, you know, health checks and that sort of thing.
Dwayne Semple 1:05:34
Never been a patient. And I was told I was the best patient they ever had in the stroke unit, because I did not want to bother them. I would not ring the bell, I would not like I only rang the bell twice in seven weeks while I was there. But of course, I had my wife who sat beside me for seven weeks too, so that was the bell ringer through the day. But I certainly I I didn’t want to inconvenience anybody at all. Again, I had, I had, you know, a pretty good grasp on things. I was able to, you know, move, reach the things I needed to reach, and get where I needed to go. I could get to the washroom.
Dwayne Semple 1:06:14
You know, they had me up showering the next day, and I basically learned how to shower with one arm and one leg on a commode and that sort of thing and and so I wanted to to get back to whatever the normal was going to be, I wanted to get there quick. And so I they tell me again, I was a good patient, but I certainly didn’t think I was, because for me to be a patient was a bad thing, right? I was always trying to help the guy in the bed next to me or whatever, right? So, unfortunate trait I think I got from my dad.
Bill Gasiamis 1:06:50
Yeah, that’s pretty cool. Though, you still have a lot of insights, you’re a paramedic. Somebody needs help next to you, well, you can shed some light on that. You’re not taking their blood pressure, you’re not injecting them with anything. You might just chat to them. There’s nothing wrong with that.
Dwayne Semple 1:07:08
Well, I tell another quick story. So when I went in by ambulance, and of course, it’s my own cruise, right? It’s people I know that come to pick me up the night I had the stroke, I had numbness in my hand, and my wife had her hand on my chest, I guess she was asleep, and I kind of wiggled to get her off me, because I just felt like it was the weight of that, her, her shoulder, whatever that caused that. So then I realized my leg was feeling the same. So I got up and took a step, and what I found was that that my step was funny, and my foot felt funny. I took the second step down and went.
Dwayne Semple 1:07:45
So anyway, I hollered. She called 911, paramedics came and took me into the hospital. And when I get there, of course, there’s some of my old staff who work as paramedics in the ER, are there, and they’re like, Oh, my heavens, what happened to you? And oh, you seem good. You know, your grips are good, and so on. So at that time, I was using both both hands. I could touch my nose and touch the doc finger both arms, and things were coming back. It felt a little weird, but things were coming back.
Dwayne Semple 1:08:13
So it was kind of like it was transient. And so I thought, wow, I’ve had a TIA. That’s really bad, right? I needed to go to the washroom. So I begged the nurse, please don’t let me bring a commodity and let me go to the washroom. So I walked down to the paramedic washroom, which is at the end of the hallway, and she came with me to make sure I didn’t fall so I felt good about that.
Dwayne Semple 1:08:32
When I got back, they had my I guess they were prepped to send me for CT scan. My wife has an autoimmune condition, and she had an attack while I was there, and it mimics heart attack in a way. She has chest pain, but it’s called Hae.
Dwayne Semple 1:08:48
It’s hereditary angioedema. So she had an attack while I was down having my CT scan. So I get back, and the doctors says, says ‘Dwayne, now I need to tell you, Roz has developed some chest pain, and I’m like, okay, so she it’s an Hae attack. Here’s what you need to do. You need to get the large bore IV, and you need to start giving your fluid. If you give her a bit of morphine, that’ll make the pain go away. And she takes a c1 esterase inhibitor called Baronet.
Dwayne Semple 1:09:14
If you give her that, okay, IV, she needs 4500 units. And she also should take her auto or, it’s not an auto injector, but her preload injection of fears there, which is called a catamaran.
Dwayne Semple 1:09:26
So it’s a it’s kind of like the epinephrine to a bee sting or an anaphylactic reaction. And the doc’s looking at me like, I have two heads. And he said, Dude, you’re having a stroke, and you’re telling me how to do this. And I’m like, I’m sorry, that’s who I am. So anyway, when the medication came down, they didn’t know how to mix it, because it’s if they mix a liquid, like a little vial of saline into a dry, a dry medicine and makes a sort of a viscous stuff, anyway, so I get up and I mixed it for them.
Dwayne Semple 1:09:55
They were, like, totally lost at how to mix it. So he’s, like, you mix that for them, like, anyway. Right? So he came in and said, You know, I think probably when she’s done and your, your your symptoms are going away, we’re probably going to send you home. So I said, Okay, great. He said, you just rest and and have a nap. And when we go to do shift change, I’ll wake you up and test again.
Dwayne Semple 1:10:19
So he woke me up again at five o’clock at shift change, and I felt a little bit weird. I put my hand up over my head, and it would fall my left hand and and he said ‘That’s interesting, but still good. I’d kind of equal grips at that time.
Dwayne Semple 1:10:37
He said, Roz is still sleeping, but when she wakes up, I’ll probably send you home. So anyway, I did. I just fell asleep again. One of my colleagues came in to check on me, to ask if I needed anything else. And I he. He didn’t turn the light on. He just opened the door. So the light came in through the door, and I reached up to pull myself up in the cot, and I couldn’t move my left arm. And so of course, then he hit the emergency bell, and that’s where it all started.
Dwayne Semple 1:11:00
So I went down for my second CT, and they still didn’t see anything in the CT, and they didn’t get an MRI for another two days. Well, another, yeah, it was over 24 hours before I had the next before I got the MRI, and that’s when they found the where the stroke was. But they found the clock. Was it a clock? Yes, yeah, yeah. It wasn’t a bleed. It was a quad. However, I had had symptoms and and I’m going to forewarn anybody that may be listening to this or watching this, that if you have the slightest symptom that may seem like a stroke, for God’s sakes, go get checked.
Dwayne Semple 1:11:34
Because what happened to me on Thursday prior to that was we had taken our grandkids to the exhibition, I had left work early to go with them. And of course, following covid, this is a an agricultural exhibition. So they have, you know, farm animals and barns and that kind of stuff. So, so I went to go with them, and I went a bit later, and as I’m walking across the parking lot. I have this what, what now is dropped foot. But I have a I had my toe on my left foot kept dropping to the to the ground.
Dwayne Semple 1:12:09
Didn’t happen all the time. It was a couple of times during the steps in that walk for probably 150 meters, I went into one of the exhibits, and they were selling tickets on a handmade quilt or something. So I bought tickets, and when I went to write, and again, left handed, when I went to write my name, the pen felt funny in my hand, and I was a little bit, I was a little bit seven years old again, just for a few seconds.
Dwayne Semple 1:12:34
I had no idea. Now, I’ve been dealing with strokes 40 years right? I’ve seen the best and the worst in symptoms in people. And I know the symptoms off by heart. However, for myself, I was like, I never even gave it a second thought.
Dwayne Semple 1:12:51
But when I when I would, when I went down that night, when I had, when I had the actual, the actual stroke itself on the Saturday night, I knew damn well what it was, right? And that came back to me that two days before, and I’m like, Damn I wish I had done something about it. And I think that had a lot to do with why I didn’t get thrombolytics.
Dwayne Semple 1:13:10
They didn’t give me thrombolytics, and I told them upfront, you know, I had this and didn’t realize, and I’m not sure why I didn’t get, didn’t get, didn’t get the thrombolytics at the hospital, really, other than neuro wasn’t really willing to do it, knowing I had symptoms a couple of days before, because we still give TNK for heart attacks, even if they had symptoms two days before. Right? So, but maybe there’s something neuro.
The Hardest Thing About The StrokeBill Gasiamis 1:13:42
Yeah, maybe neurologically, it’s a different risk, interesting. So what would you say was the hardest thing about stroke for you?
Dwayne Semple 1:14:04
Right now, playing with my small grandchildren is the hardest thing that I can’t do, not thinking about myself, thinking about them, but I, you know, I can’t crawl around on the floor and I can’t chase them. I’ve got a I’ve got a four I have a four year old granddaughter. I’ve got, we have eight grandkids. So they range in age from nine years, 10 years old to just around two months old, and all sizes, all sizes in that category. But the four year old, she comes here, I can’t keep up whether she exhausts me in an hour.
Dwayne Semple 1:14:40
Doesn’t but I think if I was healthy, hadn’t had the stroke, she’d still do that to me. But that’s the one thing that I’m real that’s really bothers me is the ability to play with these kids, because that’s what I did prior to right? I love playing with the grandkids and stuff. However, it doesn’t. It limits me. It doesn’t, but that, if you’re just say, what’s the one thing that bothers me the most?
Dwayne Semple 1:15:03
That’s the thing that’s on my mind, like, it’s kind of like I’m not the same, and I can’t do what the other grandparents and their parents can do with them and and for whatever reason, psychologically that I struggle with that, probably the knowing that potentially, very soon, I’m going to find it that I can’t go back to work and do my craft is going to be tough as well. But I’ve also come to the realization that my health is far more important than a stupid job, right?
Dwayne Semple 1:15:34
So, and I’ve, I’ve I’ve stuck all the needles and people, and put all the airways and people’s, you know, I’ve saved all the, all the lives that I think I needed to in order to make myself good and be right with the world. But I certainly, I certainly am going to miss that.
Lessons From The StrokeBill Gasiamis 1:15:52
Fair enough. What has stroke taught you?
Dwayne Semple 1:15:57
Wow, In watching some of the other people that I’ve encountered in stroke units, throughout rehabilitation and and, you know, just in sitting in waiting rooms, I’ve learned so much. And I I’ve looked the big thing I’ve learned is that I’m probably one of the luckiest guys in the face of the earth with it, in the amount of friends and support that I have that poured out for me. But I’ve also learned that there are there are folks, and I think it’s probably due to the stroke that they struggle with, the ability to to navigate and be positive about it.
Dwayne Semple 1:16:42
They feel they’ve lost everything. And I had one gentleman that was in a ward I was in for a short period of time who was a big deal in his day. He was responsible for some pretty cool stuff, and I didn’t know that at the time, but he wouldn’t go to his appointments and things. And he was, you know, but the guy could get up and walk with a walker and wheel a wheelchair like crazy. But he his bout. His balance was his issue. He couldn’t, you know, he could use all his limbs and walk and talk and whatever, but balance was his issue.
Dwayne Semple 1:17:15
Now, we couldn’t climb stairs, or fast enough he needed to be able to climb 15 stairs to get to his apartment. And so they took him home to do that. And when he when he was exhausted, when he got to the top, of course, following the stroke and the fatigue, all the all the factors that factor in, he was like, they’re gonna have to put me in a home. And I was like, No, man, you don’t have to go to a home. So anyway, I found out about what he did, and I said, Wow, that’s amazing stuff. You need to tell me more about that.
Dwayne Semple 1:17:43
So I was trying to inspire him a little bit to to think about those days and think about who he actually is and and the fact that if he, you know, if he goes to his therapy, like classes and things, goes to the goes to his sessions, he’s going to get stronger. He’s going to be able to do it anyway. I had to go to my oldest son’s wedding in Ontario. I came back with covid, so they isolated me for 11 days, and I couldn’t get near this guy for 11 days, and when I did, he was gone. He had checked himself into another into another hospital, a medical unit waiting for placement in a nursing home.
Dwayne Semple 1:18:18
The guy’s 66 years old, like he’s young, and he should have been, you know, he’s got such great knowledge and and stuff. But anyway, you know, my education, in in what I how I feel. I think I always think everybody thinks the same way I do, right? And so I wasn’t affected, you know, by the stroke the same way, obviously, that he was. And so my ambitions, and I still have ambitions and goals and things.
Dwayne Semple 1:18:33
And I think he potentially felt that he couldn’t go any further and and that was a struggle for me that bothered me worse than anything, you know, watching some of the other, some of the other folks that that weren’t inspired to do anything.
Dwayne Semple 1:19:06
Lot, a lot of lessons, If I were to do anything over again, well, if I were to do it all over again, when I was in therapy, I had to work a hell of a lot harder. Not not that I didn’t while I was there, but I I I, I want more now, because I’ve gotten some I’ve gotten that, you know, I’ve gotten some distance, and I feel good, and I think if I had had worked harder, I would feel better. Potentially, that’s all wrong. That may be in my head, right? so.
Being A Coach Recovery CoachBill Gasiamis 1:19:45
Yeah, distance is important, though. You mentioned distance from the incident, as it does like time apparently heals all, all wounds. Distance does allow people to recover, come to terms with things, adapt, change, overcome. It does allow people to do that. And you can look back in 12 months, 18 months, 24 months, and things can change. I coach stroke survivors privately, and all the people I coach are on Zoom.
Bill Gasiamis 1:20:25
And what does a stroke recovery coach do? Not much. I just listen and tell them that we’re going to check back in six months, 12 months from now, and we’re going to see how far you’ve come. And my job is to remember where they were and to report back on how far they’ve come, because often stroke survivors don’t remember how bad they were, they remember, they focus on what they can’t do, and they get sort of stuck there.
Bill Gasiamis 1:20:53
And the two people who I spoke to yesterday, both of them were one of them was 18 months post stroke, and the other one was 12 months post stroke, and I hadn’t seen them because it’s up to the client to choose their next coaching session. So, I don’t force it upon them or anything like that.
Bill Gasiamis 1:21:18
They come when they’re ready, and the person who’s 18 months out had aphasia, and I had never had a conversation with them in the 12 months in the in the nearly 18 months that we’ve been discussing with his partner, stroke recovery and all that kind of stuff. And I had a discussion with him directly, and even though he was stuck with some words and some challenges about expressing himself, we actually had a conversation. And I had to remind him that you and I, my friend, I said to him, have never spoken before together.
Bill Gasiamis 1:21:59
It’s always been done on your behalf, and even then, we didn’t actually know what you were saying, that your wife was passing information on that she assumed you were saying. And I could say that that was totally frustrating for you, because it was she was never right, and I never knew exactly what what was happening a so he was like ‘Hmm, okay, you know, he took that as a as reality, as truth.
Dwayne Semple 1:22:28
Yes, yeah. And then it’s amazing.
Bill Gasiamis 1:22:31
Yeah, and then the lady I spoke to is 12 months out, and she’s worried about her memory and all that kind of stuff, and she was a completely different person this time after a couple of months of not seeing each other, and I said to you, have forgotten how far you’ve come, because we couldn’t have this type of free flowing conversation. You were far more anxious, concerned, all that kind of stuff.
Bill Gasiamis 1:22:54
And now you’re talking to me about she’s almost she’s 78 years old. I said, at 78 years old, you are looking for your next business deal, and you’re negotiating with clients, and you’re putting presentations together. You weren’t doing that six months ago. So it’s really difficult, I’m able to notice how far they’ve come, and they need to be reminded ‘that it’s great.
Dwayne Semple 1:23:22
I do too, I think that, you know, I my, my personality changed a bit. I was, I was using a lot of four letter words, F sharps in particular. I was injecting them between syllables, and I’m sure that, you know, that a lot of people do, and people on chemo will tell you the same thing, that word, or a similar word, will be the a word that they use a lot.
Dwayne Semple 1:23:52
I looked it up, and there’s I forget where I found it, I copied it and put it, I took a picture of it, and it’s in my phone, and it explains that that people who have, who have had strokes, head injuries, concussions, that are on certain medical treatments, there were a number of things, will use the most.
Dwayne Semple 1:24:16
They’ll use a profound a word of profanity to be their most explicit word. And whatever their most explicit word, it could be fuddled, It could be, you know, ice cream, but they will use that, and they’ll use it between syllables sometimes. And that’s certainly what I was doing. But the progress even in that, because I knew I was doing it and I couldn’t control it, and so I was trying harder to control it.
Dwayne Semple 1:24:43
The other thing I was trying to control was emotion. I my tears would turn on just in a second. I would get so emotional about stuff. I did it once while we were talking, actually, and I didn’t know where it came from, but I did it again today. I, and it’s, it doesn’t happen as frequent as it did, because, you know, my my niece would call, and I’d see your face and I’d tear up, but I’ve got really good control over that now.
Dwayne Semple 1:25:10
And so that was a small thing that I recognized that had changed about me. You know, I was always kind of a heart on the sleeve type of person anyway, but that’s that’s come, you know, back to to the place where it was before the other thing.
The Pseudobulbar AffectBill Gasiamis 1:25:28
So there’s a term for that, that’s a Pseudobulbar affect.
Dwayne Semple 1:25:33
Okay, didn’t know that. Thank you.
Bill Gasiamis 1:25:34
Yeah, You need to look that up. Pseudobulbar affect, and is very common that people experience, some people experience uncontrollable laughing, and sometimes at inappropriate moments, instead of the crying and the emotion they get laughing. So I get that. I get the pseudobulbar affect response as well. And I’m 12 years post stroke, and I did a presentation on my book to a room of about 40 people recently when I launched my book and I cried.
Bill Gasiamis 1:25:46
I was supposed to speak for 20 minutes. I cried about four times during the presentation when I never expected that it was going to happen again, but I couldn’t rein it in. It just kept happening, and then I ran with it. I just kept going.
Dwayne Semple 1:26:25
Interesting theory on that. I must look at that, because folks with PTSD exactly the same thing, right? So I do peer referral work, or I did do peer referral work. I spent a number of years working with PTSD, mostly critical incident stress and that sort of thing, trying to get to it before it became PTSD, or here we call it, OSI – Operational Stress Injury and and, yeah, the tears come readily, and you know, people that are healed, who have who have come through, have come through on the other side who are talking about PTSD.
Dwayne Semple 1:27:03
They’ll openly burst into tears, and they’ll say, I’m okay. I’m okay, you know, I’m still a good policeman, I’m still a good firearm. And I just burst into tears, and I have no idea why. You know, don’t feel sorry for me. And so my son’s, my son’s a wedding I was talking about, it was just post stroke, about two months, and I had to get up and give a little speech.
Dwayne Semple 1:27:21
So my disclaimer I was, you know, that number one, I might throw the odd F sharp out, or maybe a whole lot of them. And then the other thing was that I might, I might burst into tears and, and please don’t feel bad about it. You know, they’re tears of joy at this point, but it’s just part of the stroke.
Bill Gasiamis 1:27:38
So my client, who I coach with aphasia, he could throw out an F sharp for every expression that he had. So I’m going to do it, and we can swear a little bit on this podcast, it was a ‘fucking fucking fucking fuck. I was like, wow, and every and he was so good at saying it, you actually had a sense of his emotion, what he was feeling, what he was trying to express. He was so good at changing the annunciation and the tone and the length and the sharpness of it that you could actually totally get, what, where he was coming from, even though you didn’t know the sentence.
Dwayne Semple 1:28:29
I’ve had patient I’ve had patients like that. And I remember an older gentleman one time we had taken into hospital, and nurse nurses were flabbergasted that that’s all this man could say. And this nurse kept saying to him, you can’t use this profanity here, you know. And he was ‘gibberish’ like he just kept at it. And he was, he was laughing at her, and that was, you know, he was making fun of that he knew damn well. He couldn’t get anything else out. That was all that was coming. And it was kind of, he was lashing it out just to see what she would do. Oh, yeah, you’re absolutely correct.
Dwayne Semple 1:29:00
I look back now. So I kept a file of photos and videos and things. So when I started going into physio, my wife would come in, the staff would allow her to video or take pictures or whatever she wanted, as long as they weren’t in them kind of things they didn’t want to be put on Facebook, and we never did, but I have a file of those photos of me, you know, in hospital, unable to move my left side from the time I got up and started walking.
Dwayne Semple 1:29:33
When I started walking with a parallel bars, when I went to a Hemi walker, when I went to a big cane, when I went to a smaller cane, when I went to a single cane, when I was walking on my own.
Dwayne Semple 1:29:45
I have videos of me the day that I decided that we were going to get on that trike and give it a try. I have the tears of elation when I rode the first kilometer on it like I was so elated that I could do it like you. I. I don’t know if you hit any of those milestones, but I hit a number of them and and I’m so proud of that, but I’ve it’s certainly been an interesting journey.
Dwayne Semple 1:30:12
And when I realized that this was the journey I was taking, and I didn’t have to worry about, you know, work and other people at this time, I just had to worry about me, I made it about me, although, like I said, I can’t take, I can’t take other people out of my, out of my, my script sort of thing. So when I see somebody that’s struggling, or whatever, I’m, unfortunately for me, I’m a helper, and I feel like I need to get my nose into it and help them out. Yeah, and I don’t know if that’s a it certainly helped me along. Let me tell you that it’s right, helps it’s made me purpose.
Bill Gasiamis 1:30:48
Yeah, it helps me, mate, let me tell you that I found my purpose doing the podcast and writing a book about “The Unexpected way that a stroke became the best thing that happened. You know, because there is so much positive feedback coming back my way. My YouTube channel is full of positive feedback for what the episode that the particular person listened to has done for them, or how it has helped them. My email inbox get I get 2-3-4 emails a week, people telling me about what a fantastic job I’m doing for them.
Bill Gasiamis 1:31:24
And it’s like, wow, I this is a selfish pursuit, I started it for me. I didn’t start it for them, but I’m but it’s such a what an amazing benefit, you know, to have a selfish pursuit that gives so much and helping is one of the key ingredients to post traumatic growth. So there, my book is a basically a book about post traumatic growth that I didn’t know the term when I wrote the book, so I didn’t put that information in there.
Bill Gasiamis 1:31:56
But since I’ve presented on the book a couple of times and spoken about it and looked into the research of post traumatic growth, one of the key essential ingredients is doing something for somebody else, volunteering or helping other people. And a lot of stroke survivors who I’ve interviewed will say that they immediately found a way to help other people, and if they haven’t done it yet, they’re saying, I want to help other people.
Dwayne Semple 1:32:23
So I had Rec. therapy, Recreation Therapy, they didn’t know I was in the facility until two weeks before I left, and they’d been there eight weeks. I play a drum, a Celtic drum called the Bodhran, and so it’s just a single drum that you hold and. Hold on one second
Bill Gasiamis 1:32:43
We’re good.
Dwayne Semple 1:32:48
There we go. No, it was somebody calling me on, not on Zoom, but on another medium there, anyway. So they found out about this drum, and there was a guy upstairs had played one. So he brought it down. We tried to harness it to me and tried to figure out how we could play. It wasn’t working out so well. So he said, Okay, you need to get a hold of the Tetra Society.
Dwayne Semple 1:33:10
And the Tetra Society is a group of engineers and and volunteers that come together and and they they build adjunctive equipment for people so that they can do the things they love to do, you know, when they have a disability. So in my case, you know, they would build me an adjunct so that I could put pressure on the back of the goat skin to change the tone of the drum. And I was like, okay, so they filled out the form, sent it to the Tetra Society.
Dwayne Semple 1:33:34
So the guy from Tetra called and wanted to talk about it. So he said, So what do you know? What do you like to do? And I said, Well, I take her with bicycles. You know, I’m a bike mechanic, and I do this sort of, Oh, really. Well, we have a client who’s this, would you be interested in helping us out? So now I’m a member of the Tetris society. I help them out with a couple of things.
Dwayne Semple 1:33:54
Actually, I’m helping a gentleman who’s got a very rare disease build a flying shuttle for his loom so that he can weave. And currently, and it’s been a long process, but anyway, they still haven’t helped me with the damn drum, but I’ve been building bicycles and come up with inventions and ideas help them out. So I’m hoping that someday that I can go back to playing my drum again. But that is one of the things it does. It gives me pleasure, right to help out.
Bill Gasiamis 1:34:25
Why not? As we wrap up, the last question I’d like to ask you is, there’s people listening, the on our journey, the have a similar path or a different path after stroke, what would you like to tell those people?
Dwayne Semple 1:34:40
I think the best thing is to stay positive regardless. And I’m not sure how you do that. I’ve done that, but I found something every damn day to get up for and be thankful for. You know, express your gratitude, find the people that find the people that feel your best. Basket. So you were talking about the fact that you were filling your own basket, trying to fill your own basket, and have filled other people’s basket. So that’s a movement that started, I think it was in the US.
Dwayne Semple 1:35:11
There’s a kids book that was written. It’s called, have you filled a basket today? And I suggest every adult read that. But it’s all about, you know, by you sharing and doing good things for other people, your basket will get filled automatically. Don’t let the basket stealers, the people taking stuff out of your basket, ruin your day. You need to be you need to be positive, and you need to look for those little things, and you have to set some goals for yourself.
Dwayne Semple 1:35:37
I don’t mean things that are unattainable, like, you know, I am going to go win the million dollars in the lottery. You’re not going to do that. But tomorrow, I’m going to walk a little further than I walk today, I’m going to walk a few steps without my cane. I’m going to, you know, I’m going to, so you want to soar just a little bit higher.
Dwayne Semple 1:35:57
You just want to take, you know, step up one more rung, or take one more stare. You know, you need to. You need to do that in order to progress. You know, to feel fulfilled. John Wooden was a UCLA basketball coach, and he was one of the most amazing coaches, and one of the most, one of the one of the coaches that I follow. So one of the one of my, one of my things was I taught leadership. And I love leadership because there’s so many different things, and not every, not every great leader has all the things it takes.
Dwayne Semple 1:36:35
I followed John Wooden because one of the things he would do is take the basketball players out into the forest, and he’d get them to find a tree, and he’d say, Okay, you’re ready to climb a tree, and I want you to go as high as you can. Some people go up, you know, 2 branches, some would go right to the top, as far as they could go. And he’d say, Okay, what I want you to do is, I want you to go one more. Just take one more branch, just go one more, and then you can come right down.
Dwayne Semple 1:36:58
And they all did. And why did he do that? He just wanted them to step out of their comfort zone. So if you step out of your comfort zone, if it’s only one step or one inch every day, that’ll make a huge difference. That’ll make a huge difference. And that’s what’s kept me going, and I you know, I preached this stuff for a long time, and I did it. I tricked myself into doing all the right things. Had, did I have some down times? kind of, but I always tried to stay positive, because I always had something to look forward to, right? I had, as I said, I got eight grandkids now.
Dwayne Semple 1:37:34
I two of them have come along since the stroke, but so I had six at that point, but I had, you know, I had them to look forward to seeing all the time. And all I wanted to do was get out of the hospital and get some hugs and things and and I still feel like I’ve got some, I’ve got some good left in me to try and help. And I want to feel, as I said before, I want to feel productive. So, yep, moving forward, what you need to do is you need to, you know, stay positive and and take that one extra step every day.
Bill Gasiamis 1:38:10
And on that note, thank you so much for joining me on the podcast.
Dwayne Semple 1:38:15
Thanks for having me. It’s pleasure.
Bill Gasiamis 1:38:17
Well, that brings us to the end of another episode, I hope Dwayne’s story of recovery and the exploration of treatments like etanercept through the expertise of Dr. Tobinick provided you with hope and valuable insight. His determination to adapt and thrive despite the challenges of his stroke is truly inspiring. Thank you to everyone who has left a review. It helps others find the show, and it gives much needed encouragement to stroke survivors.
Bill Gasiamis 1:38:47
If you haven’t already, please consider leaving a five star rating and sharing your thoughts on iTunes and Spotify for those watching on YouTube, remember to like, comment and subscribe to stay updated on future episodes. If you’d like to further support the podcast, you can do so by subscribing to our Patreon page at patreon.com/recoveryafterstroke.
Bill Gasiamis 1:39:10
Your support helps us continue to bring these important stories and maintain the podcasts production. Every contribution, no matter the size, goes a long way in allowing me to share stories like Dwayne’s and reach stroke survivors who need the encouragement.
Intro 1:39:27
And if you’re a stroke survivor or know someone with a story to share, I’d love to hear from you. My interviews are unscripted and casual, so just come as you are. Lastly, if you have a product or a service related to stroke recovery, consider sponsoring an episode, visit recoveryafterstroke.com/contact, to get in touch. Thanks for joining me today, and I can’t wait to see you in the next episode.
The post Perispinal Etanercept Experience: A Paramedic’s Stroke Recovery Story appeared first on Recovery After Stroke.
Stroke Recovery After 2 Years: Overcoming Hemorrhagic Stroke, High Blood Pressure, and Sensory OverloadRecovering from a stroke is a long and often challenging journey, especially when it involves a hemorrhagic stroke, high blood pressure, and the complications of sensory overload. Two years post-stroke is a significant milestone where survivors reflect on their progress while continuing to adapt to new challenges. In this post, we will explore the journey of stroke recovery after 2 years, focusing on the key areas of overcoming hemorrhagic stroke, managing high blood pressure, and dealing with sensory overload.
Hemorrhagic Stroke Recovery: A Two-Year MilestoneA hemorrhagic stroke occurs when a blood vessel in the brain ruptures, causing bleeding that damages brain tissue. Unlike ischemic strokes, which are caused by a blockage, hemorrhagic strokes are often more severe and can lead to long-term physical and cognitive challenges.
The first two years post-stroke are critical for recovery, as this is when the brain is most capable of neuroplasticity—its ability to form new connections. While the initial stages focus on regaining basic motor skills, survivors often continue to face issues such as weakness, fatigue, and cognitive problems even two years later. Despite these ongoing challenges, many stroke survivors celebrate the progress they’ve made and look forward to continued recovery.
Managing High Blood Pressure After StrokeHigh blood pressure is a leading cause of strokes, and for many survivors, it remains a key factor in preventing future strokes. Managing high blood pressure is crucial to maintaining health and avoiding additional medical issues.
Two years after a stroke, lifestyle changes such as adopting a healthy diet, regular exercise, and medication are essential in keeping blood pressure under control. Survivors must continue monitoring their blood pressure and make it a regular part of their health routine to prevent future strokes.
Sensory Overload: A Persistent ChallengeMany stroke survivors deal with sensory overload, a condition where the brain has difficulty processing and filtering sensory information. After two years, survivors may still struggle with environments that feel chaotic or overwhelming, especially in noisy or bright spaces.
To cope with sensory overload, stroke survivors often learn techniques such as mindfulness and deep breathing. Occupational therapy can also help survivors manage these challenges, making daily life more manageable as they continue their stroke recovery journey.
The Importance of Community Support in Stroke RecoveryCommunity support plays a critical role in stroke recovery, especially after the two-year mark. Connecting with other survivors, whether in-person or online, can provide emotional support and practical advice. Many stroke survivors find that sharing their experiences with others who understand their journey helps them feel less isolated.
Support groups, both in hospitals and online communities, become essential lifelines for those facing the ongoing challenges of stroke recovery. These groups offer encouragement, tips, and inspiration, allowing survivors to feel empowered in their recovery.
Stroke Recovery and Post-Traumatic GrowthTwo years after a stroke, many survivors begin to experience post-traumatic growth—a phenomenon where individuals find personal growth and new meaning after a traumatic event. Survivors may find themselves more resilient, empathetic, and grateful for life’s small victories.
At this point, many stroke survivors also take on new roles, such as becoming advocates for stroke awareness or offering support to others going through the early stages of recovery. Finding purpose and hope is essential to long-term recovery, and the two-year mark is often when survivors start to redefine their lives beyond the stroke.
Conclusion: Thriving After 2 Years of Stroke RecoveryReaching the two-year milestone in stroke recovery is a significant achievement. While challenges like high blood pressure, sensory overload, and lingering physical or cognitive deficits may persist, the progress made in those two years is remarkable. Survivors continue to adapt, learn new coping strategies, and find ways to live fulfilling lives after a stroke.
Stroke recovery is a long-term process, but with the right support, mindset, and management of health issues, life after a stroke can be rich with growth and meaning. Whether you are a stroke survivor or caregiver, the journey of recovery is one of resilience, hope, and continuous progress.
2 Years Post-Stroke Interview With Steve LawrenceJoin Steve as he shares his inspiring 2-year recovery journey after a hemorrhagic stroke. Learn how he battled high blood pressure and sensory overload, and find hope in his resilience.
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Highlights:
00:00 Introduction
12:08 Hospital Admission and Initial Diagnosis
16:46 Stroke Caused By High Blood Pressure
33:26 Sensory Overload and Hospital Challenges
40:49 Transition to Rehabilitation
47:46 Challenges with Pain Management
1:10:28 Preparation for Etanercept Treatment
1:15:03 Lifestyle Changes and Support 2 Years Post-Stroke
Transcript:
Introduction – 2 Years Post-Stroke
Bill Gasiamis 0:00
Steve, hello everybody, and welcome to episode 319, of the recovery after stroke podcast. In this episode, I’m honored to share the extraordinary journey of Steve Lawrence, who, alongside his wife Donna, has faced the incredible challenges of stroke recovery after experiencing a hemorrhagic stroke. Steve, a drone pilot, was suddenly struck with paralysis and high blood pressure while on the job, which completely altered his life.
Bill Gasiamis 0:29
Two years into his recovery, Steve and Donna reflect on the trials they faced from managing sensory overload in hospital to navigating rehab during the pandemic. Join us as we delve into their powerful story of resilience, the importance of partnership in recovery, and the insights they’ve gained over the last two years. This is an episode you won’t want to miss.
Bill Gasiamis 0:55
Steve and Donna Lawrence, Welcome to the podcast.
Donna Lawrence 0:59
Thank you.
Steve Lawrence 0:59
Hi Bill, thank you.
Bill Gasiamis 1:01
Thanks for being here, guys. I really appreciate it. Let’s start off with Steve. Tell us a little bit about what happened to you.
Steve Lawrence 1:10
Okay, back on June 29th, 2022 I was at work. I work for a television broadcaster in Canada called CBC, and we were doing a national event, and my role as a videographer, camera person was, I’m also a drone pilot, and I was doing the aerials for the event. Unfortunately, the event was very sad occasion. It was a RCMP, which is our national police force. The member was killed back in 2020. I think, 2020 during a massacre that happened here in Nova Scotia. And they were finally getting around to having her funeral. And so it was nationally broadcast, and my role was to to get the aerials for the broadcast and feed it into the program. It was around noon. It was a warm day.
Steve Lawrence 2:16
It was probably 25 Celsius, Sunny and I was I got up from sitting down. When I was tired sitting in a chair, and then when I got up to to move, to get into position where I could see the drone, I noticed my finger didn’t work on the buttons, but I need to control the drone with and then my hand went, and I thought I was having a heat stroke. So I thought, that’ll go away.
Bill Gasiamis 2:52
Sorry, just a sec. Apologies for what I’m about to say. It was 25 degrees you thought you were having a heat stroke?
Steve Lawrence 3:01
Yeah, 25 degrees Celsius.
Bill Gasiamis 3:05
Well, 25 degrees Celsius, where I come from, is barely t shirt and shorts weather. Do you know it’s, it’s kind of warm, but not really. Do you know what? Right?
Steve Lawrence 3:15
Yeah, we’re in Canada. Today was a warm day. We’re like, upper mid 30s. It was really hot today. This is approaching our into summer starts in June here, and it was one of our first really warm days. So I wasn’t really getting used, like we can get pretty warm here, where we live on the east coast, but this was one of our first real warm days it was 25, 26.
Bill Gasiamis 3:44
It’s 77 Fahrenheit.
Steve Lawrence 3:47
Before I go any further, Donna is used to the heat. She’s from the southern part of the United States, so everything I say in Celsius is Greek to her. She has no translation, Donna. She’s used to need degrees, 100 degrees, with humidity, right?
Bill Gasiamis 4:06
I’m going to check in with Donna as well, right? Because 77 Fahrenheit in Melbourne, Australia, that’s like nothing, right? Is it the same down in the southern United States?
Donna Lawrence 4:19
77 yeah, it’s nice.
Bill Gasiamis 4:21
Yeah, it’s just okay.
Donna Lawrence 4:23
It’s like you could get by with long sleeves.
Bill Gasiamis 4:27
Yeah if you had to.
Donna Lawrence 4:29
If you had to, yeah.
Bill Gasiamis 4:32
It’s interesting.
Steve Lawrence 4:33
So for us going through a cold, long winter, it was our first kind of warm week, and so I thought it was heat stroke or something, and I wasn’t sweating or anything, but everything just started to not work. And it started with my finger, in my hand, in my arm, and then I started to walk about 10 steps, and then down I went, and I remember seeing a few things, because I was very aware of what was happening.
Steve Lawrence 5:07
I was flying a drone, and all I was thinking about was, Oh, my God, the drones in the sky. And is there anybody around now, with the drone, we have buttons that we can push that will bring it back to its location. And I couldn’t activate it with my left hand, because that’s the side that had the paralysis, and I was holding the unit with my right hand.
Steve Lawrence 5:36
So how am I going to, I couldn’t get my hand over to it, so I collapsed. And before I fell down, I remember seeing my surroundings, and there was a man coming towards me, and we were in a big open area, like a football field, and but it was like a silhouette approaching me. And I passed out, and I woke up. I don’t know how long I was out, maybe a couple seconds, and he was cradling me in his like he had me. My head was in his arm, and he said, You’re having a stroke.
Steve Lawrence 6:17
And I said, Oh, I couldn’t speak or anything. And I realized, okay, this is not what I thought it was. And he said his name was Bill. And I remember this clearly. He said, My name is Bill. You’re having a stroke. I work for 911, which is our probably the same as you have there. And I’m not calling them. I’m calling the guy on the hill in the ambulance, because I know who that is.
Steve Lawrence 6:46
So he eliminated the whole system of calling through the dispatch. He just called the guy in the ambulance on the hill, and within a minute, they were outside of the event they were covering and brought me into the ambulance, but I was in and out of consciousness for some of that time, and when I came to I still didn’t realize what was happening. The event was a parade of RCMP officers who were in their uniforms. And I don’t know if you ever saw.
Bill Gasiamis 7:24
CMP, tell me about I think I might have, but just tell me what that stands for.
Steve Lawrence 7:29
Well, they’re, they’re called the Canadian Royal, Royal Canadian Mounted Police, so back in the day, they used to be on horses, yeah. And they wear red uniforms, and they’re very distinguishable, if you see one little that’s what their CMP. Some of them, though, were dressed in military fatigues camouflage, and were carrying their weapons. And these weapons were used for some of this, this story that we were covering, that was the funeral fair.
Steve Lawrence 8:07
This was a situation that involved police action with these military weapons. And when I woke up, I thought I got shot by one of these guys. Oh, that was my first instinct, because they were reaching down to pick me up, and I said, was I shot? And they they were laughing, and they go, no, no. And someone tried to offer me a bottle of water, and Bill swatted it away, and he said, No, no, he’s having a stroke. You can’t give him anything, because he could aspirate worse things could happen. So I was very, very lucky that, that had happened to me, but I still wasn’t processing what was happening to me.
Bill Gasiamis 8:50
When you would dealt with after Bill managed to get the right guys over from the hill, you woke up in hospital. Did you end up in hospital after that? Very quickly.
Steve Lawrence 9:05
I did a couple things before that. I started getting sick. And before that, though they were taking my clothes off, and I said, get my phone. But I had to land the drone. Right? I still had that in my head. I had to land the drone, and I remember taking the controller and pushing the button with my face along like that. And I guess it landed because someone on my crew retrieved it. Part of my crew also was listening to me.
Steve Lawrence 9:35
I had a headset on so I could speak to my spotter, and I was speaking to somebody in the satellite truck, and Emma, who was in the satellite truck, came out, and I handed her my phone, and I said, Call Donna. And I don’t know Donna’s phone number. Donna’s got an American phone number that I always just push one. It’s automatic and but I remembered it. I went 423, and I couldn’t like I don’t know how I knew that having a stroke and all this happening, it just came out of me. She called Donna. Donna was home watching the program, and she knew, and she can tell you that this part.
Intro 10:17
If you’ve had a stroke and you’re in recovery, you’ll know what a scary and confusing time it can be. You’re likely to have a lot of questions going through your mind, like, how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse? Doctors will explain things, but obviously, you’ve never had a stroke before. You probably don’t know what questions to ask? If this is you, you may be missing out on doing things that could help speed up your recovery.
Intro 10:47
If you’re finding yourself in that situation, stop worrying and head to recoveryafterstroke.com. Where you can download a guide that will help you. It’s called ‘Seven questions to ask your doctor about your stroke’. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website now recoveryafterstroke.com, and download the guide. It’s free.
Donna Lawrence 11:20
Okay, I was watching, they were doing a live on it on Facebook, and I was sitting there, and I was watching it, and I can tell that the drone wasn’t quite angled, right? I’m a photographer too, so I kind of know those angles. So I was like, put it down. Lower it down. You know, you’re not, you’re not doing it right. And I was talking to the phone like he was hearing me, but I thought, something’s not right. That’s not it just didn’t look right. You know, that’s not his shooting.
Steve Lawrence 11:55
And then the phone rang, and it was Emma calling her.
Bill Gasiamis 12:02
How does that phone call go? Donna, how does that phone call go? You answer the phone. It’s Steve’s number.
Hospital Admission and Initial DiagnosisDonna Lawrence 12:08
Yeah, well, I was already kind of a little flustered that the angle of the camera, and I thought maybe something’s happened to the drone. Maybe it’s having, you know, problems with it, but, she called and she said, there’s been an incident. Steve is okay, but we’re going to put him in an ambulance. He’s going to go to the hospital. And I said, What do you mean he’s okay, but you’re taking him to the hospital? It just didn’t make sense. So then I was like, okay, you know? And then the adrenaline started, and so I started packing a little bag, like a little overnight bag, because I said something may not be right.
Bill Gasiamis 12:54
And then, did you shoot off to meet him at the hospital? Is that the intention of the phone call was it to get you to go there?
Donna Lawrence 13:01
Yeah, at that particular day the car, he had taken the car to work. So I didn’t have a car, and it was probably about 20 minutes into the city. So they had made some phone calls. Emma did. Had made some phone calls back to the station, which the station got the anchor to come to the house to pick me up, because he knew where we lived, and he drove me over to the hospital, and we had gotten there probably about 10 minutes after they had arrived with Steve.
Bill Gasiamis 13:33
What kind of person are you when there’s an emergency? I know there’s certain people I wouldn’t call in an emergency. It’s like, all right, call that person. Don’t call that person. Call that person, avoid that person. Are you cool, calm and collected when it comes to that kind of stuff, or are you do you take things difficult? Is it hard for you to sort of over, overthink about what’s happening?
Donna Lawrence 13:57
No. I was just okay. I gotta get the bag. I gotta get a purse. I gotta do something with the dog. It was just like I knew that things had to be done and not to jump to conclusions, because I didn’t know what was happening. So that was pretty looking back on it now I took it very calmly. You know.
Bill Gasiamis 14:19
You’re on my call list then.
Steve Lawrence 14:22
Yeah, because of that, it saved me. Because when I got in the hospital, I still had no idea what was happening to me, until I got through the main doors and there was a neurologist there, and he was doing this. How many fingers do I have? And can you see me over here? Can you see over here?
Steve Lawrence 14:39
And somewhere in the mix, Donna was standing off to the side, and I saw her, and she was not freaking out, and they had told her that he had a stroke. We didn’t, I don’t know at the time, did we know it was hemorrhagic? We did. So they were kind of narrowing it down to where it was, what kind of stroke it was. But when I saw Donna I just I went, Oh, I’ll be fine. I’ll be okay. She was fine as kind.
Bill Gasiamis 15:06
So she’s calm, you’re calm, and then that that’s a good kind of patient to be it’s good to be calm, because then the doctors can deal with the situation, not with somebody who’s freaking out as well as the situation.
Steve Lawrence 15:19
Right? And I didn’t really worry, because I never had any health problems in the past, other than self inflicted pain from breaking bones and wiping out. And I don’t have any. I didn’t know.
Bill Gasiamis 15:34
Was there any now reflecting back, was there any signs that you think, oh, maybe that was the issue giving me some warning signs. Was there anything like that?
Steve Lawrence 15:47
Yeah, there was times when we were doing things that I would get really sharp pains in my head, and I would mention it to Donna, I say Oh, that was weird. It was just like someone took a hammer to a metal plate. Ding, you know, zingers. And it was always on that side. It was on this side my head, yeah, the stroke happened. It was inter cerebral hemorrhage happened on the right, but everything on my left pretty much went paralyzed.
Steve Lawrence 16:17
And so if I was to look back and see if there were any signs that might have been something that was saying, hey, but it was all during this pandemic, and we didn’t have doctors to go to. It was just phone calls. I never was hooked up to a blood pressure machine in years. I didn’t have someone checking me other than a phone call. And I was, well, try taking the Tylenol a stuff like that.
Stroke Caused By High Blood Pressure
Bill Gasiamis 16:47
Yeah. So what was the underlying cause? Steve, what did they discover caused the bleed?
Steve Lawrence 16:53
It was high blood pressure. In my case, it was extremely high. It was I broke down because of 212 over 105 so all I knew before strokes at 120 is the number you’re supposed to be in and around. If you get too low, then you could faint. If you get a little higher than that, you might whatever, but 212 sounds like a really, really high number. And in my case, it was. How long has it been going that way? Could have been years. I don’t know. I never knew, but high blood pressure does run in my family. This came out afterwards that I found out that my mom and my brothers have it, but it wasn’t something that they didn’t have a stroke, it was just take pills and manage it.
Bill Gasiamis 17:43
It’s often made worse by smoking or drinking. Were you a smoker or a drinker or anything like that? Overweight?
Steve Lawrence 17:50
I’d have the odd beer, like once a week with my buddies, but it would that would be at just one or two. No smoking, never.
Bill Gasiamis 17:59
I know how I had the bleed. How old were you when that happened?
Steve Lawrence 18:05
I was 56 and that was when it happened.
Bill Gasiamis 18:10
And as far as you knew, and everybody else knew looking at you, everything looked and seemed okay, and you didn’t have any concerns about your health prior to that say and and have regular contact with doctors or GPS or anybody,
Steve Lawrence 18:27
Nope and even when I did go to the doctor before the pandemic, things kind of changed. The hands on stuff wasn’t the same. It was kind of, you go in, you spend 10 minutes in the office, and then next, I had did some injuries to myself from work with my back and my shoulder. I had broken that and then that was just referred off to a specialist, so, but as far as.
Bill Gasiamis 19:03
Blood pressure or any of that stuff.
Steve Lawrence 19:05
No, no, nothing like that. So when I heard that I had a stroke, it was like now my grandmother, she was 100 she almost made it to 102. and she was having TIAs, but she’d go to the hospital and be back home for supper, and I thought, okay, that’s what’s going to happen to me. And then one of the funny things that comes out of this is the doctor, neurologist asked me as he was leaving, he said, Is there anything you want to know? Do you have any questions? And I said, Yeah, Donna and I are planning to go down to Tennessee in August or September, so a couple more months, will I be able to drive down there? And he just looked at me and said. You, young man, are not going to be driving from many calendars.
Steve Lawrence 20:05
That, if that didn’t give me a stroke, then it was, it was like, what does that even mean? They’re not going to be driving from many calendars. So I went back and then tried to process that, like, Is this really going to be that bad? And it wasn’t really until later. I think that week I was or maybe that day, I was laying in bed in the emergency and it must have been that day, and I kicked my left leg. And I didn’t know it was me kicking my left leg. I couldn’t feel it. And I said, who’s in bed with me? This that sounds funny.
Donna Lawrence 20:46
Because your right leg knew that you hit something, but your left leg wasn’t talking back.
Steve Lawrence 20:50
But I was looking around saying, who’s in bed with me. Now, I didn’t lose any perception of vision or speaking. It was mostly just physical, very like limp, no feeling at all. So when I kicked it, didn’t know it was my leg I was kicking it.
Bill Gasiamis 21:09
I can relate to that. I’ve still have that issue 12 years later. It’s not, it’s not like I completely don’t know. It’s like there’s not enough information coming back to my brain to say your leg is in the wrong position. So often, if we go out to dinner, and you know, you sit on those tables with lots of people, and sometimes there’s a table leg in the middle of where you are, because you’re at the table leg part of the seat.
Bill Gasiamis 21:41
And then I’ll go to shift over to the left to get out of the table or to the right, and my leg will be stuck where the leg, my leg will be stuck at the table leg, and I’ll be trying to move, and I won’t know that my leg is there, and I won’t be I won’t be able to take to slide, and I’m just trying to work out. Oh, why am I not sliding? Ah, okay, I look down and my leg is stuck behind the table leg. So it still happens, and it’s very weird. It’s still something I haven’t completely gotten used to. I still go into automatic mode when I think about trying to get up from the table and walk away.
Bill Gasiamis 22:22
Donna, what’s it like when you go to the hospital and you receive the news that your husband has had a stroke? Like, what’s it like to be a spouse and receive that information? And when I say spouse, what I mean is like to see the person that you love on the other side of the bed in that state, what was that experience like?
Donna Lawrence 22:47
It was so funny, because I guess the adrenaline at that point had went away and strength came, and I knew that I had to be the pillow of, and I say the pillow because he had to lean on me. I mean, I had to be that person for him that was going to keep him happy, keep him smiling, keep him lifted, not worry about anything, take one day at a time.
Bill Gasiamis 23:15
The role, I think, that the caregivers play, is really important, like Steph said earlier, a it’s important to become it’s important to be able to step up and say, you know, I’ve we’ve got this. You can lean on me. I’m going to be able to help you through this, even if it’s not true, even if you don’t know that you can do it.
Bill Gasiamis 23:37
It’s important to be able to at least say it in that time. And then if you can pull it off, that’s great. If you can’t pull it off, then it’s important to get the resources around you guys to support each other, so that you both have support in that situation. And as far as you had known, had you ever dealt with anybody? Had had a stroke before, or known anybody, or met anybody?
Donna Lawrence 24:00
Yeah, probably, I don’t know, maybe 25 years ago, my dad had two strokes, two ischemic strokes, his affected his speech, but with rehab, within a few months, he was okay. So his was not severe, but it was, you know, it was severe at the time, but it he got through it. So that was the only person that I knew of that had had strokes. And I had never really heard of anybody having a hemorrhagic stroke. I mean, like, Tell me more. What does this mean, you know, and it was the big brain bleed in the center of the brain that they couldn’t do anything. They just kind of just let it go, yeah, let it heal itself, right?
Bill Gasiamis 24:51
Okay, so obviously, they medicated Steve. They’ve given you the blood pressure medication. They’ve realized that it was high. They would have brought your blood pressure down. At some point and stabilized it, and then they just let it heal and monitored it. Steve.
Steve Lawrence 25:05
Yeah, there was no snow going in and stopping it, which was kind of scary when you I thought about it, they didn’t. I remember say, if we go in, it’ll do worse damage by cutting your head open and going in and trying to clamp it off or whatever.
Steve Lawrence 25:21
There was no drug that they could give us, whatever that drug got a shot that would these, that’s for clots, they said, nothing that they could do, so we’re going to let it bleed out. And so I remember there was a number that I heard later that I had a 30% chance of making it 33 or 30% something like that. So I it didn’t hit me. I didn’t go, oh my god, this is my last moments. I didn’t, didn’t clue in. But looking back on it, I’m like, wow, like I was close to the end, and I didn’t know it.
Donna Lawrence 26:07
It too is. It’s kind of like the old saying you gotta be in the right place the right time, if he had been on a shoot, say, three hours from here, which that’s a common occurrence, maybe on the coast, and and two to three hours away from a hospital, yeah, much less than ambulance. I mean, the outcome would have been a lot worse.
Steve Lawrence 26:36
Yeah, the job I had, I was never in the city, usually I’m in the sky, I’m on the water, I’m in the woods and far away from my base, traveling.
Bill Gasiamis 26:50
This clearly, is not around paramedics who are on standby just over the hill.
Steve Lawrence 26:55
No, and to be scooped up by the guy who knows 911, and it’s all like intervention stepped in, and I never really looked at it like that until afterwards, like the blessings in life that kept us alive, kept kept me alive, and having Donna in my life, Donna was Not working. She moved up from the United States. Her family’s still down there, and she moved here for me, and she was a homemaker, and we were able to live on my income, and I would come home every day, and everything was perfect. Now I’m in the hospital, and she was able to come in every day before I woke up. She was there when I went to sleep. She was there every day.
Bill Gasiamis 27:50
Yeah, that’s very useful, isn’t it? It’s very helpful when somebody, when you wake up and things are weird and scary and you don’t know what’s happening, and then there’s a calming voice in the room with you, just checking in, making sure that everything is okay. How, how did you play that role? Donna, what did you feel like your role was?
Donna Lawrence 28:11
Oh, my role is just to be like, I’ve always been to him, but kind of amped up the little volume a little bit, because I had to do everything. I mean, I was for weeks. I had to feed him. He couldn’t, he couldn’t function, you know, so it’s, I took the role of a lot, a lot, and the nurses saw me come in, and there it was almost like a calming effect to him. They’re like, oh god, dude, she’s here. She’s like, there’s one patient that I don’t have to do everything for because she’s here.
Bill Gasiamis 28:46
Right? Okay, so he couldn’t eat. He couldn’t eat at that stage. Couldn’t get up, couldn’t move any of the left side.
Donna Lawrence 28:55
They had to hoist him. They’ve got one of these things. And I wish I knew the crane part. They they would, they would scoop this little thing under him, and they would hoist him up and bring him over and dropped him in, not drop, but placed him in a wheelchair, and then I took the role of pushing it. You know, we would go on walks and things. We didn’t get to stay out very long because it then was hot, and then he just was very fatigued, very fatigued.
Steve Lawrence 29:29
And I wasn’t walking. I was in the chair, yeah, but I was a bit bigger than I am now. I’m down to what I should have been, I guess, in weight. But I was 222 pounds, 511 and a bit. So now I’m down to 180 I just checked before I came in, and that’s where I was most my life. But I think as when I turned 50, I started putting on a little more weight and wasn’t paying attention.
Steve Lawrence 30:03
Diet was a big thing. Eating on the road, a lot of work, you don’t sitting, you’re not coming home, you’re traveling, you’re just going to eat where you can eat at your desk, inhaling whatever you can get. So and a lot of things work was, my work was very stressful, but I didn’t really pay attention to it being stressful.
Bill Gasiamis 30:28
Just a quick break, and we’ll be right back with Steve’s remarkable journey. But before we continue, I wanted to remind you about my book “The unexpected way that a stroke became the best thing that happened”. It’s not just a collection of stories. It’s a guide on how to achieve post traumatic growth after stroke. The concept of post traumatic growth, or PTG, was first coined by Dr Richard Tedeschi and Dr Lawrence Calhoun in the in 1995 and my book builds on the groundbreaking work.
Bill Gasiamis 31:00
In it, I share my own recovery journey and those of others who turn their challenges into powerful opportunities for growth. If you’re looking for practical science backed steps to move forward after stroke, this book is for you. You can grab your copy on Amazon by typing my name, Bill Gasiamis, into the search bar or head over to recoveryafterstroke.com/book.
Bill Gasiamis 31:26
So it’s high intensity, right? Because it’s about getting the right shot, the right time, being at the right place, all that stuff. It’s all about getting it back to the station as quickly as possible. It’s forever changing, especially in a scene like that, where there’s people everywhere and a parade to focus on, it’s just constant, and it’s not about you, really, it’s about footage. So everyone puts a lot of effort in. I interviewed a reporter a few years ago, Mike Smith, and he was telling me that his hours were just ridiculous. As a reporter, he was working all hours in every hour of the day, and he had no life other than work because it was so consuming, so over the top consuming.
Steve Lawrence 32:19
That’s what was happening to me, and I didn’t realize it until after I had my stroke, and look back and say, but I was working eight to 10 hours a day at work, and then I was coming home. Donna’s been sitting here patiently all day waiting for me. She’s got supper ready. She’s taking care of the house and taking care of all of our affairs. And she just wants to have a conversation, how was your day? And I take out the laptop and I continue working.
Steve Lawrence 32:50
I mean, taking in stuff I wasn’t able to finish at work, yeah, and doing it at home, so making sure everybody at work has got all the stuff they need. And I never stopped, I never turned it off. And there are a lot of people at work that are still like that, and it was a wake up call. A few of my friends that have are in similar situations with workflow, and they went, Whoa, it’s bundle Facebook, and they drink and they live different lives. Work was a big thing.
Sensory Overload and Hospital ChallengesBill Gasiamis 33:26
Yeah, so when you woke up with all of the deficits, you can’t eat, you can’t walk, what was the rest of the process like? Did you do rehab? How long was that for? And where was that?
Steve Lawrence 33:41
Okay, so the hospital I was in was in the city, and for Donna, every day she would come in, and she had to learn how to drive my car, because my car was a annual standard. We call them six speed. And she did that. She did pretty good. My hospital stay was five weeks, I think, but it was hell on earth, to be blunt. I like I thought it was going to die there because of the noise, all the confusion going on, and there was a man that died next to me the night after I got in, he had passed away from a stroke, and was still there the next morning when Donna walked in and all the commotion of everything going on, the beeps, the buzzers, the noises, the smells, I didn’t think I was going to make it.
Bill Gasiamis 34:37
And wow. So it was that intense, the sensory overload was that intensive? You felt really unwell about it. That’s so interesting, because obviously lots of stroke survivors, brain injury survivors comment about the sensory overload from light, sound and all that kind of stuff. And you’re in a hospital where you’re meant to be cared for and looked after. Nobody’s considering a. That side of it for you at all are they? They’re just not tuned into how much harder it is to experience all that sensor sensation with an injured brain.
Steve Lawrence 35:13
No, they would come in in the morning, and it was a routine, but they turned the lights on and the buzzers all night long, people are moaning and groaning, and some were in different for different reasons, and but I found out that I was going to go to rehab, which was another building down about five minutes away from the hospital, and it was just like waiting for to get that call. Let’s say we got a bed, and once that day happened, it was like I won the law.
Bill Gasiamis 35:48
They were out of there.
Steve Lawrence 35:51
I was out of there. It wasn’t that easy, but I’ll get to that instead.
Donna Lawrence 35:55
They, he typically when, or typically when they have a stroke at this particular hospital, they’ll bring them from the ER straight up to a certain floor that’s called the stroke floor, because that is the unit that they particularly are just fully involved in strokes. So there’s, there was a lot of patients, and at that time, even that was kind of mid covid, I would say there was a lot of covid patients in there that also had had a stroke, and it was just, it was kind of scary, because you seen all these signs saying, covid Dress up, you know.
Donna Lawrence 36:38
You had to put on all The little mask and the, what do they call it? The gams and things that that doctors had to put on to go into the room. So that was scary, because I thought I’m going to come out of here with covid, and then I won’t be able to see him.
Bill Gasiamis 36:56
Yes, she goes out to all the covid era patients of any illness, because I heard so many of those stories where people had their stroke, condition, situation made even worse by all of the challenges that were related to that. I can’t imagine what that would have been like. We went through a lot of tough times for over three brain brain hemorrhages, brain surgery. My mother in law passed away at the a week or two before my brain surgery, so we had to have the funeral, and then brain surgery and throwing a pandemic into the mix, I can’t imagine like how much harder that would have made the whole situation which was already terribly hard.
Donna Lawrence 37:44
Right? I mean, a stroke is a new thing, you know, especially if you’ve never had one, or had any, any person around you that had one. So going through that and learning how to cope with that, and then, plus the pandemic that that was totally what do you do? You know, it was just a lot of scary things, a lot of scary things.
Steve Lawrence 38:04
And Donna was the only person I had a connection with, but the doctors and stuff were just so overwhelming. But without Donna there, every day.
Donna Lawrence 38:13
I had to be the advocate.
Steve Lawrence 38:15
Yeah, she really did have to do things for me.
Bill Gasiamis 38:18
Yes, the advocate is important role under normal circumstances, but when the doctors and the nurses are run off their feet, even more so than they normally are, because of the stuff they got to deal with with the pandemic, then Steve’s easy, forgotten, like.
Donna Lawrence 38:37
And you have to and it would still be if something happened today in the pandemic was not going on. I mean, it’s still a little bit, but you gotta be on top of what the doctors or the nurses are telling you. You got to either take notes or try to remember it. Because I caught two or three nurse practitioners and nurses that told us one thing, and then the next day told us another. And I’m like, No, you told me that the numbers are. You told me this medicine was for the you know? And so it was like, I wasn’t trying to correct them, but correct me if I’m wrong, what I need to believe. You know?
Bill Gasiamis 39:19
Yeah, it’s really important, Steve, you finally get out of the hospital ward, and then you’re going into rehab. Tell me about the rehab experience. What was it like to really first, for the first time in a long time, like not be able to use any of your left side?
Steve Lawrence 39:39
Yeah, So it was during the hospital stay that I realized that I can’t stand up by myself, that I had to get the crane pick me out of bed, put me down, and then they tried to do some rehab in the hospital, when I went out in the hallway to walk. Collapsed, but they caught me. I was it, but what I found out, I did was, what’s that nerve, the vagus nerve? Is that something you ever heard of?
Bill Gasiamis 40:09
Yeah, the wandering nerve. It’s the nerve that connects all your organs. Every single part of your body is connected to the vagus nerve.
Steve Lawrence 40:17
Well, I triggered that, and boom, down I went. They were there to hold me, but it was, it’s, I had that happen to me a couple times, and I thought, Oh, my God, if every time I stand up, this is going to happen, it can’t go on.
Bill Gasiamis 40:30
And what happened? What did you feel?
Steve Lawrence 40:32
You just all, you just lose all control. Everybody switches off your bodily functions, your muscle tone.
Donna Lawrence 40:41
It’s like you faint, yeah.
Steve Lawrence 40:42
It’s like a faint, yeah.
Bill Gasiamis 40:45
Right, okay, switches off, yeah.
Transition to Rehabilitation Before 2 Years Post-StrokeSteve Lawrence 40:49
So I get the word that I’m going to the rehab yay. It packed me up, and that took about a day to get everything coordinated. And we go over there and the rehab building, I’ve been in it before for doing stories that I have done in the past about people who’ve had injuries that needed rehab. And I knew it was a really good place, but where I was going to be in a room it was institutional, like I felt like I was coming from one bad place and going into another. And I got in a room with four guys, and there’s, there was no quiet.
Steve Lawrence 41:31
I was thinking this is where I gonna get some rest and this is what I need for my head, and the guy next to me from middle east, I was think he was from Afghanistan and the guy on the another side is local and the guy next to me was dying of something but I dont know if he survived, he was moaning and groaning and I don’t know if he had a stroke if he had something up, but there’s a guy next to me on the side who was calling his family in the middle east, at 3 o’clock in the morning which supposed to be I’m dead asleep, and he was yelling and because I thought he had it as scream, that made them hear the connection out of work.
Bill Gasiamis 41:34
That’s just, just so, you know. But when my family talk to people overseas, they do talk a bit louder. It’s just to make their voice travel somewhere quick or something. I made like it’s to hit the satellite better. I don’t know why, but the voice goes up. And also, if you’re from one of those kind of backgrounds, you’re born with a voice that’s louder, just by default, you’re about, you know, 20% louder than the normal person, right? And you, and often, Steve, you piss people off, right? So I do that like I have a normal conversation with my wife then she says, why are you yelling, dude, we’re just talking. I haven’t yelled yet. And that’s, that’s all he was doing. He was just being normal, yeah.
Steve Lawrence 43:06
I realized that.
Bill Gasiamis 43:07
But at three in the morning, it’s tough.
Steve Lawrence 43:10
Yeah my brain was having a hard time with all the different noises and sensations, and he couldn’t speak english very well and so when he wasn’t talking to them he was on his iPad or tablet, listening to children’s programing like Dora The Explorer. It was a riot when you think about it, but he was learning how to speak english through these children’s programs.
Steve Lawrence 43:36
And so I hear in the morning, Teletubies, or whatever it was or Dora he was repeating it so I’m like oh good God help me, take me out of here. And my work plant that I have pays for a semi-private room so Donna was right on that and she’s like why is he in here with four people, you’re lucky you got a bed. True we were lucky we got a bed and they get me down to the gym that they have there and I meet the lady that would teach me how to walk again, and she’s been at it for some years, she’s about 5 foot zero and I thought there’s no way she can hold me up, there’s no way.
Steve Lawrence 44:17
And they did a video it was incredible like to see me in my first steps again with her right behind me every bit of the way but the rehab I started to make gains and I with physical stuff. And my left leg, I can’t move arm quiet a long time.
Bill Gasiamis 44:22
Your left leg is what situation now?
Steve Lawrence 45:07
My arm, oh, I can walk, it’s but I worked really hard to get my mobility back, and I thought I was doing it too fast, because I was getting a lot of pain. And I was saying to them, is this what I never had stroke before? So I don’t know. Is this is normal to have this pain? And they’re like, then they start poking me with different things and thinking, it’ll go away.
Steve Lawrence 45:38
We’ll give you some pills. And so they loaded me up with, I had to write it down, amitriptyline, Gabby penaltra, simple Cymbalta, and that was the worst one that this made me a zombie. It was bad, and the pain didn’t go away. Wiped you out. Yeah, pain didn’t go away at all. But I still had the pain and taking all this medicine, and I’m just, I wake up after sleeping and I want to go back to bed again. Fatigue was huge, but the rehab I ended up getting, I don’t know if Donna was behind this, but she kept saying, like, he gets a private or gets a semi private room.
Donna Lawrence 46:26
Have to talk to a Head guy.
Steve Lawrence 46:28
The head dude. And one day a nurse came in, and she just started grabbing all my stuff out of the room. And I thought, Oh, we pissed somebody off, like, I’m going back to the hospital. And they, they literally wheeled me out of the room in my bed, like I’m still laying in bed waking up, like, what’s going on? And she puts me into this, I thought was a closet, and it was my own bed, my own room, my and she said, No, you’re going to have this now and I didn’t care how big it was, but I could close the door, and I could shut everything else. And so the last five weeks of rehab, I had a private room that’s and it was good, because Donna could come into the room where, when at the hospital, she could come in, but at rehab she couldn’t, because it was shared.
Bill Gasiamis 47:19
Yeah, too many people. That’s so good. I remember also having all of those troubles in the hospital ward and then going into rehab and having my own room in rehab. It was such a relief. It’s where I actually rested. It took, you know, a good two or three weeks to actually rest, and I was in rehab for four weeks, so even though they were fatiguing me when I was trying to learn how to walk again and all that stuff.
Challenges with Pain Management: 2 Years Post-StrokeBill Gasiamis 47:46
At least I could go into my room and there was no buzzers and there was no people whinging and moaning and talking to Afghanistan at three in the morning. It was just me, and it was so good to have that space. It’s where I think why most of my recovery was possible? Definitely. Why? Tell me about the Michael Jackson glove that you’re wearing?
Steve Lawrence 48:11
Yeah, really. Well, this is back to the pain. They still haven’t gotten to the bottom of it, and it wasn’t until about a couple months ago, they thought, because most of the pain I have is in my butt, right in my butt, kind of deep in the cheek, and then down behind my leg, in my calf, and then right into my foot. And they thought it’s your sciatic nerve. And then why is this hurt shoulder, my shoulder and my arm. And it wasn’t until I went to an orthopedic surgeon who was a second opinion, they were going to cut me open and do a dissectomy in my spine.
Steve Lawrence 48:55
Because I do have, Well, where your vertebraes are in between you have bulging discs. They take the take the vertebrae and take it out and put an artificial one in, and then hopefully takes the pressure off of the nerve that the bulging part of the nerve. Yeah, I do have that based on an MRI. It’s very slight, but one doctor said it could be really slight, and it’s like a hangnail on your hand that it feels like your fingers amputated if you it gets too bad, but it could be really bad, and you don’t notice it, so I’m going to get you a second opinion.
Steve Lawrence 49:43
And the second opinion orthopedic guy said, You know what? He said, have you talked to your neurologist about this? And I said, neurologist, I haven’t seen a neurologist since the moment I walked in the hospital. He said, What? And I said, No. He said. Wrote a referral right away. He said, I’m going to get you to see her. You need to see a neurologist. He said, what the pain you have is nothing to do with this. It’s see central post stroke, stroke pain.
Steve Lawrence 50:14
That’s what he thought of. And so that’s when I started looking into that more, and that’s how I come across your videos, and other people, I’m like, What is this thing called central post stroke pain? I saw that 60 minutes in Australia, did a feature on a woman. And so then I really started digging deeper. And I’ve I’ve found you, I’ve found other people. I’ve talked to people that have had the treatment in Florida for different things.
Bill Gasiamis 50:46
We’ll talk about a tennercept in a second. Post stroke, pain is so common. I’ve met people on the podcast who have opted to have a foot amputated to get rid of the pain. It’s that, that’s what I it’s dramatic. Sarah Curley, that interview was stunning, because I just couldn’t believe who I was going to interview and why I was going to interview her. And then, if you watched that interview, or if you heard Sarah talk about it.
Bill Gasiamis 51:23
There has been no better decision that she has made in her life than to remove her foot, and the pain went away, and she’s just, uh, massive advocate for it. And I was like, I can’t I can’t wrap my head around it still, but I also have never been in the amount of pain that Sarah must have been in. Now I get left-side pain, and my foot is always kind of stiff and tight. The ball of the foot kind of always aches. My left hand aches. But I’ve never had to take painkillers. I can almost ignore it if I focus on something else, it kind of, it’s not in my mind.
Bill Gasiamis 52:05
And then I’ve had people reach out to me because they heard Sarah’s interview and said, Can you put me in touch with Sarah? Because I think I need to go after that particular solution as well. So I end up, I don’t know what it’s like, but I can appreciate that people after stroke do experience pain. A friend of mine has a daughter who experienced a stroke when she was 17, Brain Hemorrhage as well, and everything was going well, and her recovery was doing great. And then at around about the seven or eight month mark, she started to feel pain.
Bill Gasiamis 52:45
And what they were saying was, as the brain started to heal and started to come back online, things were settling down, but one of the things that was triggered for her to feel as other things started to settle down was the pain that was there, and it’s kind of and it’s not. It’s not. This is the hard part about it. It’s actually not real, because it’s not the pain is not saying, warning you have done something to injure yourself.
Bill Gasiamis 53:18
Do something about it. It’s just like a an incorrectly wired part of the brain now that’s triggering the pain mechanism for no reason that’s urgent that you need to take care of. It’s just accidentally kind of switched on, and now it’s a case of, how do they switch it off? So I can appreciate it, and I’m really surprised. Well, I’m not during covid. I’m not surprised that you didn’t end up seeing a neurologist during that era, but it’s often I speak to stroke survivors who have not seen Well, I didn’t see many people even during my visits to the hospital over the three years that I was going through it, because my incidents were on again, off again.
Bill Gasiamis 54:09
There wasn’t, there was too many people involved in my in my acute presentation. So when I was there experiencing the bleed, I would get treated, etc, and then they’ll be like, Okay, we’re going to monitor you, catch you later, see you later.
But they never said, What are your deficits, or what are your cognitive issues, or any of that stuff. They just treated the bleed and then sent me home. So we had to do the same thing. We had to find out, who else do we need to speak to? Like, what else can I do to make this better? Who asked? I have to follow up with we were just it was just missed. It was just one of those things, you know. And it wasn’t even during a crazy pandemic period.
Bill Gasiamis 54:54
It was, I would say, in one of the best times to be unwell in. Hospital in Melbourne, things were great but, but it’s good that you guys have worked it out, and you’ve continued to advocate and get second opinions and keep asking questions and being curious, searching for more information online. That’s the reason why the podcast exists, because I was lacking a lot of the information that stroke survivors still lack. So it was like, what, how do how do I do that is, I put it out there caregivers.
Bill Gasiamis 55:27
It’s important for caregivers as well, so that they can navigate how to support their loved one and how to advocate on their behalf in the hospital when their loved one can’t advocate. Yes, so the way I came across a tannercept was in the very early years of my recovery, and immediately it’s it triggered that hope, that spark for hope. Ah, okay, so I haven’t been there yet, and I really would love to go and see Dr tobinick.
Bill Gasiamis 56:09
And first what I had to get out of my head was whether or not it was legitimate or not, because there was a lot of terrible talk about what he does over there, even after the 60 Minutes interview that was done now, I’m pretty sure it was done around nine years ago here in Australia about his particular treatment. And I, I am not in a position to raise the money to travel from Australia to Florida to get the injections, to come back to all of that. I’m not in that position yet, and I am not in the kind of pain where I have to 100% try and get it sorted.
Bill Gasiamis 56:55
Because, like I said, sometimes I can not notice how my left side feels if I’m distracted enough by the tasks that I’m doing, whatever. So when you found the interview, how did you react? What did you think about that when you see something like that, when you’re experiencing the kind of challenges that you are?
Steve Lawrence 57:17
Well, the part journalist in me needed to know more, and I did the research. And first person I would talk to about was Donna. I said, Let’s watch this. Look at this, this might be what I need.
Donna Lawrence 57:32
It’s about what three months, four months ago.
Steve Lawrence 57:34
Could have been. Yeah, Donna didn’t really she’s she’s more familiar with how things go on in the United States with the healthcare system, and she had a lot more skeptical moments about it. She’s but it wasn’t until the last couple months, I’ve actually been in contact with people who’ve had the treatment, the lady that had aphasia. She was on the 60 minute story. I tracked her down, and she called me. She called me, and we had a talk with her about two a month ago for a good hour. And she said, not the same thing.
Steve Lawrence 58:18
She said, I was skeptical. I thought that was the way my life was going to be, but they had the means to be able to travel down and try it and, well, you see the result. It worked in the video. Then you go online and read a little more, and there’s a lot of skeptical, like, oh, that’s just witchcraft, or those people are actors or, and I’m like, No, this is real. I know the pain. And when they were getting down to like, the details of like my teeth hurt on my left side, like when I chew, how would they know that in your taste, the taste, the detail of my fingernails feel like they’ve been all chopped off like that, that detail of pain. How can someone else know that.
Steve Lawrence 59:00
And they’ve had this treatment. And one of the guys that just came back last week from there, he, I think he was commenting on in your group, on your podcast and on YouTube, and he said, I’m going down in July. And I replied, Let us know how it goes, because at that point I was really looking into it. And the end of July happened last week, and I sent him a note underneath his comment, I’m going down in July, and he said, I’m just on my way back. I have lots to say about it. And I went, Oh, right on, this is what I want to I want to hear this. Found out the guy lives an hour away from me, and we talked on the phone.
Steve Lawrence 59:51
Yeah, the other day, this guy is done his homework. He’s a. High Level paramedic who’s researched everything. He’d studied, all the journals, all the medical stuff, had the discussions with his family and people, and said, we’ve got the means. Let’s, let’s make it, see if it works. And he’s, he’s noticed a difference, and like we all have different deficits.
Steve Lawrence 1:00:22
Mine, people look at me and go, wow, you had hemorrhagic stroke and you’re walking and you’re moving. And I’m like, but I wasn’t two years ago. But I have a lot of residual issues, the pain. You can’t explain that to somebody no like Donna sees it in me. She sees the fatigue, but I still cannot. And so you asked about the glove earlier. This is maybe it’s in my head, but it’s a compression glove, and it’s, it’s helping with the nerves.
Bill Gasiamis 1:00:56
It’s not in your head. No, it’s legitimate.
Steve Lawrence 1:00:59
It really is, and sometimes I wear the sleeves that goes right up here, and it helps. And I have one for my leg. It knocks it down a bit. So back to the intercept. Katanas up. I’ve talked to these people. I talked to Linda, I talked to the 60 minutes producer. I’ve talked to other people who been there. Met the doctor. I talked to the doctor. We had a conversation with him for an hour a couple weeks ago. I’m scheduled now to go down in September. I have one more thing to do, a test to make sure that I’m they have to do a TB test tuberculosis.
Steve Lawrence 1:01:36
I have that on Monday or Tuesday, and if I if I’m good with that, then we’re going to make a trip down. My goal is to take what pain I have I can function like on about a six or seven pain. Some days I’m at an eight, especially with the weather, I’ve noticed, yeah, we have different climate here in the weather.
Bill Gasiamis 1:02:04
Okay, so the cold. How does the cold effect? Because I hate the cold. We get quite cold here in in Melbourne. So the last few weeks, wake up in the morning, it’s one degree Celsius or two or three, and through the day, I might get to 13 or 12 or whatever, and I feel way more pain and way more kind of irritation on my left side than I would in summer. I love summer. It could be 37 degrees, and I’m loving it, you know, there’s no problem. So how is that dealing with the temperature fluctuation for you? Because you guys get really cold up there. We do. Yeah.
Steve Lawrence 1:02:41
We get really cold in the winter, minus 20 to Celsius. That’s not as bad as when it’s around zero, it’s more there’s more moisture in the air, then when it’s really, really cold, it’s dry, the humidity is not high, but when it’s around zero, there’s a lot we’re right on the ocean. So there’s more humidity with the fog and the dampness that I can feel the weather before it hits the weather comes, or if it’s raining, yeah. So the other day, it was raining, and it was, it was quite sore. So if, I can get pain knocked down from an eight to a five or a four, I can probably live fine with that like you are.
Bill Gasiamis 1:03:24
That’s a win.
Steve Lawrence 1:03:25
You know you’re you’re managing, and so we have the resources. We’ve got a family in the States, we can go down and make a vacation out of it and see her, her family. And things just came together in the last last year, my mom passed away during all of this. And I know my mom would want me to have this done, because every day I saw her, she was always like, Steve, how’s your pain today, dear? And I’m like, you know, it’s alright, mom.
Steve Lawrence 1:03:55
She got it. She ended up dying of brain cancer suddenly, like it was, within months she was diagnosed and and she died very peacefully. She didn’t suffer. She was able to talk to us and live comfortable life right up to the very end. And she knew and she would want me to do this.
Bill Gasiamis 1:04:19
I feel like everybody says, what I’d like to encourage everybody to do is, I know that’s not within everyone’s means to go and get $19,000 worth of etanocept shots, you know, at Doctor Tobik. So I get that. And that being said, like, I still think everybody should go after every single bit of recovery they can get from wherever they can get it and do anything they have to do to get it.
Bill Gasiamis 1:04:44
That’s why I like talking about a tennis set, because the podcast, previously to this, shares stories. It’s amazing, like it does give a lot of hope and support to people who have had a stroke and are learning about their condition and how people deal with it and how they might overcome it. Uh, but the really, the real thing I want to do is I want to be able to say, here’s a potential solution for you. Or some people go and check that out, and that’s what that interview that I did with Andrew, or I spoke to him too.
Bill Gasiamis 1:05:16
Yeah, Andrew’s awesome that I that I did, like episode, oh, man, I forget what it was now, but it’s easy to find. If anyone wants to know what it is, they can just, they can just look at the show notes. So the so the idea is, like to help people actually solve their problems. That’s the whole point. And the thing about etanercept, the issues with it. You know about this by now, but for people who are listening, who might have just come across a toner sept and are curious about it, is that it’s out of patent.
Bill Gasiamis 1:05:53
So it’s been used for decades, literally decades, to help people treat rheumatoid arthritis and decrease the inflammation. It’s extremely well tested, but for people who are using it for rheumatoid arthritis for many, many decades, there’s a low risk of causing bleeds in the brain. I’m pretty sure, because of the use of it and the continuous use of it, it does have a negative effect after many, many years, and the doses that rheumatoid arthritis people get are so much higher than the doses that stroke survivors get and they get over a prolonged period of time. So there’s a little bit of concern about that.
Bill Gasiamis 1:06:33
And there’s no research being done, I know Dr. Tobinick is involved in doing a study and reporting back on the findings that he’s been able to achieve through the injections that he’s given so far to his private patients. But there’s not enough people funding studies for stroke, and there is one study in Australia that I’ve heard of that’s being done at the moment. I’m not sure what phase it’s at, and whether or not they’ve been able to report positively on the outcomes yet. So that’s the that’s the challenge with it. And for some people, it won’t work. And I think I understand why it won’t work, right?
Bill Gasiamis 1:07:17
So a little while ago, I did an awesome interview about hyperbaric oxygen therapy with a gentleman who is a doctor who His name is Amir Hadani, and the organization he works for have, they have therapy centers in the United States, in Israel, and I think In one other part of the world, I’m not exactly sure now, but the difference between Dr. Amir’s procedure and process, as opposed to Dr. Tobinick is the hyperbaric oxygen therapy center does a whole bunch of neurological scans to determine whether or not you are a candidate by looking for what they call penumbras.
Bill Gasiamis 1:08:07
Penumbras are areas of the brain that are kind of switched off as a result of the injury, but are likely to switch back on once the therapy is provided. And what you do is say you wanted to go and get hyperbaric oxygen therapy. It’s a two month course. I’m pretty sure it’s a two month course, daily oxygen therapy. And if you qualify, they know that you are likely to get a positive outcome before you start the procedure. So if you think about it like it makes it kind of a little more a little more legitimate in that I’m going there, they are going to know whether I’m a candidate for a positive outcome, and then I’m going to do the procedure.
Bill Gasiamis 1:08:58
Whereas with Dr. Tobinick, he doesn’t have those facilities. They’re not neurologists, they are general practitioners who give an injection like the general practitioner would to a rheumatoid arthritis patient, and then they hope for the best, and they hope that you were a candidate, and that you get a result. So one other thing that people can consider, seriously consider, is hyperbaric oxygen therapy under a very controlled environment, not the kind of therapy where you can go down to the local place that’s got a hyperbaric oxygen therapy tank in their clinic, right? And then you just go there, and you sit there for an hour, and you pay your 80 or 100 bucks, and then you leave.
Bill Gasiamis 1:09:44
Not one of those where it’s not monitored by doctors. This one in particular, they seem to target the same things that etanercepts target at tennis targets, although Dr. Tobinick maybe doesn’t include that you. The way that he describes the the patients who are eligible, because he doesn’t have that data. So this is how I’ve kind of understood what Dr. Tobinick is targeting, but hasn’t got the data to confirm whether you’re a whether you’re a, not a true candidate, but somebody who’s going to likely to get good results.
Preparation for Etanercept TreatmentBill Gasiamis 1:10:28
So basically, what I’m trying to get at is the more information about your brain that you’ve got about the possibility of having those penumbras that are revivable, the more information you have, the better the decision that you’re going to be able to make about going to Dr. Tobinick and getting Etanercept done. What I love about Dr. Tobinick is that he’s doing the things that we are. Some people are begging the medical community to do for stroke survivors that they, for some reason, almost refuse not to do like it’s so silly that there is this massive amount of data that Dr. Tobinick has been able to gain over at least nine years that I know of that has been doing these procedures.
Bill Gasiamis 1:11:25
He’s got YouTube videos of hundreds of people who have had positive outcomes, and for some reason, somebody else on the planet hasn’t decided to hook up with this guy and go, How can we help stroke survivors get better outcomes, like, it’s so ridiculous I cannot understand that for the life of me.
Steve Lawrence 1:11:46
No. And it was the 60 minutes crew that got involved that made me kind of think, Okay, this might get some traction and might give some legitimate See to it.
Bill Gasiamis 1:12:01
Usually 60 minute cruise are trying to find, you know, the snake oil cells. When they’re trying to show you that these guys are scammers. Don’t go and spend your money there. These guys are doing the exact opposite in this particular case, you know, and the person who’s on the video has a perfect, you know, result as a as a result of the injection, within minutes on TV, and nobody else has gone, oh my god. Like, why don’t we work with this guy and help him get more results, more outcomes? Dumb.
Steve Lawrence 1:12:38
Yeah, that’s a conversation that I’d love to get answers for but it’s, it’s crazy, it you hear the that it’s the FDA, it’s big pharma, it’s all this stuff.
Bill Gasiamis 1:12:51
Look, it’s probably big pharma in that if it was patented and they had and they owned the rights to it, they would fund it no end because then they’d be able to sell it all around the world for stroke. But the fact that they’re not, I don’t know. I’m just glad we’re talking about it again, because this continues the conversation.
Bill Gasiamis 1:13:13
This gets more people curious, and maybe somewhere we can start, you know, chipping away at the things we need to chip away at to get the result and to get the procedure made available for more people and at a cheaper price, right? That’s really the most important thing, and hopefully even get it covered by medical insurance or something.
Steve Lawrence 1:13:35
Yeah, that’s the thing, if, if more people are aware of it, and it gets into the right ears, and people go, ding, these people are having strokes every day.
Bill Gasiamis 1:13:46
And, yeah, they’re not going to start.
Donna Lawrence 1:13:49
No, they’re not, since they found all the information about Dr. Tobinick, day in and day out, he’s watching a reading day in and day he passes it to me, or we watch it together. And yeah, at first I was like, Yeah, I don’t know about this. Yeah, I just don’t know about this. But sounds too good to be true, probably. And just like everybody on the internet, then I’m the type person started reading myself.
Donna Lawrence 1:14:18
But after we spoke to all these people that had good outcomes, and God bless the ones that has not but the ones that had good outcomes, it gave me more encouragement that this is really what we need to do, you know. And after we spoke to Dr. Tobinick with the first consultation over the phone. I was sold. I was sold. He wasn’t hiding any.
Steve Lawrence 1:14:48
He was he was very blunt about your chances. He said, I’ve dealt with what you’ve experienced and what you’re experiencing. He said, I’m not going to cure it, it may reduce it maybe. An 80% chance it works, a 20% chance it doesn’t.
Lifestyle Changes and Support 2 Years Post-Stroke
Donna Lawrence 1:15:03
Yeah, and there was quite a few times in the hour conversation, he says, We hope it works. We hope it gets you some satisfaction and some pain relief, but there’s no guarantees. You know, he kept saying there’s no guarantees. So he’s not hiding anything.
Donna Lawrence 1:15:25
He’s very he wants to get he wants, I think, if somebody came in and said, look, let’s work in partnership and get this done.
Donna Lawrence 1:15:31
he wants to help this meeting.
Steve Lawrence 1:15:33
He’ll, he’ll hand over. He’s showing the videos every, every week.
Bill Gasiamis 1:15:37
That’s the part that is interesting, is that there’s plenty of data, plenty of information. What would be good to hear from is people who didn’t get the result, and to get like somebody like that on a podcast interview and find out from them, you know, how it was for them not to get the result? I imagine some people are very disappointed when they go there. I’m sure pay the money and then get the result.
Donna Lawrence 1:16:07
It’s like I told Steve, we’re going to have to get the mindset that we’re going to go we’re going to hope and pray for the best, that that’s our thing. We’re going to hope and pray for any improvement. And if not, then at least he gave it his best shot.
Steve Lawrence 1:16:24
Yeah, I wouldn’t know unless I take the shot.
Bill Gasiamis 1:16:29
You gotta do it.
Steve Lawrence 1:16:30
I wonder if it’ll work. Well, that’s not going to fix it. I won’t know unless I take it. If it doesn’t work, it doesn’t work, I go on to the next hope.
Bill Gasiamis 1:16:43
Yeah, hyperbaric oxygen therapy man, no worries. Definitely there’s, yeah, it’s really good. Do you know why? Because it’s not invasive at all, and it and hyperbaric oxygen therapy, when it’s not done even clinically, has positive outcomes for people in their brain, because the brain gets more oxygen. So your brain, brain lights up. Your knees hurt less. Your back hurts less, like it fixes all these other things that are peripherally, kind of causing dramas. And then it said it it may also support that other part of the brain, and it’s non invasive, but I imagine it’s expensive.
Bill Gasiamis 1:17:17
I can’t imagine it’s cheap, especially, especially Doctor Amir’s process, because they are very rigorous in the way that a they treat you beforehand, and then also in the way that they administer the therapy and right you. But the thing about it is, you know if it’s going to work for you beforehand. Of the in the video, you see scans. He shows scans of a brain that looks like it’s going to be able to be rehabilitated. And then he shows the after, after the therapy and how it works like so it’s not all. Hope is not lost. If a tennercept doesn’t work, is basically what I’m trying to get out there.
Bill Gasiamis 1:17:58
You know, there’s more to it, and it’s just keep going after it. That’s That’s all I want to encourage people to do. And even if hyperbaric oxygen therapy is out of your budget, like even that, if you become a deep meditator and you learn how to breathe and do exercises with breathing, you know, Wim, Hof breathing and that kind of stuff, you can improve the circulation and the blood flow and the healing in your body.
Bill Gasiamis 1:18:25
So even that is not out of the question, and you can do that for free. You don’t have to go anywhere. Just jump on YouTube, click Wim, Hof, breathing, breathing method, and get somebody to take you through that exercise for free on YouTube, and you’ll get outcomes. You really will. So I just want to encourage everybody to just go after all the recovery they possibly can, you know.
Speaker 1 1:18:52
There’s no dead ends. It’s, there’s always something to try. Yeah.
Bill Gasiamis 1:18:57
Don’t die wondering. And be wary. And you need a donor in your life to be wary and go hang on a sec. What’s that junk? You know? What are you talking about? Let’s look at that deeper. You know, we can’t just jump into everything without looking at it.
Speaker 1 1:19:15
Well, we changed our lifestyle a bit. We used to be very outgoing and active outside, very physically active. We want to get back into that. That’s important. Our diets have changed. We’ve watched a lot of what we’re putting into us now, the stress is huge. I’ve let that go. I’m not going back to work if, if everything works out I was this close to the retirement, I’m not going to, you know, I’m going to not let that take me down beacuse I know.
Bill Gasiamis 1:19:49
You haven’t worked.
Speaker 1 1:19:51
No, no, it’s too physical of a job. I’ve been written off by the doctors saying, you know, the pain and they would. Expect me to go 100 miles an hour again. Yeah, back again.
Donna Lawrence 1:20:03
Mentally, mentally with deadlines, like five minute deadlines before it goes to air.
Steve Lawrence 1:20:08
Yeah, there was a lot of that. But physically, it wasn’t that bad, but it was all in that in the head that you get this done every day. So I’ve eliminated that limited, yeah, watch the diet. Watch, you know, just start putting stress. That’s the beginning. One thing I did find out, though I have in my head, is something called small vessel disease. Have you ever heard of that?
Steve Lawrence 1:20:30
No, tell me about it.
Steve Lawrence 1:20:32
It’s well, I don’t know much other than that’s what happened to one of the vessels in my brain when they did the MRI, it was a small vessel that burst and the blood bleed leaked into the areas that caused the deficits that I have, and with a blood pressure of 212 that would do it.
Donna Lawrence 1:20:55
And the other in the hospital, we found out that he has a slight aneurysm in his.
Steve Lawrence 1:21:05
Lower descending aorta.
Donna Lawrence 1:21:10
40 millimeters, and which our cardiologist said that if it got to 60, that that would be a little love. We will need to do something, but they’re monitoring it. They weren’t doing it every six months now, he said, we’re going to stretch you. Since we didn’t see any growth in it, we’ll stretch you to a year before we you know.
Speaker 1 1:21:31
So the good thing of having a stroke is now I’m taking care of myself better. I didn’t know this thing about my heart. Now I can get that checked. Other things that are going on in my head, managing that.
Donna Lawrence 1:21:47
But it’s everybody that our story has touched, that that’s now either on high blood pressure medicine or they have a machine.
Speaker 1 1:22:00
Everybody in my family went out bought a blood pressure machine, because the only other time you can get your blood pressure is at the doctor and the pharmacy. Everybody, all my friends, are interested for knowing, like, what happened, and we’re all on the same page, doing the same thing. Why did it happen to you and not me. So they’re watching their lifestyles and how they do things differently. That’s good, man. One other thing I’ve started to do is give back. So I found some people that and this happened to me when I was in rehab.
Steve Lawrence 1:22:34
Part of the OT was people who have had strokes and have recovered and wanted to come back and talk about like, this is me five years out when I was like, you you know you’re thinking, you’re in the hospital. Oh god, you know, I’m not going to ever be able to do this or that. Well, these guys gave you hope, and maybe it would work. Maybe it didn’t. Depends on how you interpret it.
Steve Lawrence 1:23:03
One of those gentlemen and his wife were here two days after I got home from the hospital to talk to Donna about what she can expect to help you know me get around during my stay in the hospital, we actually moved that was planned, and we’re in a place now where everything there’s no stairs or obstacles. So that was just another blessing that happened. But I’m giving back to people who want to talk about it like it’s, it’s hard on the head, like emotionally, oh my god, my life, especially younger people.
Steve Lawrence 1:23:44
One of the guys I’ve reached out to, I talked to once a month or so, and he he’s having a rough go with, you know, his physicalness, he used to be outside doing everything and but he realizes it’s, it’s a day by day thing, and it’s going to take time, and if you got a good, positive brain set and good people around you, hopefully you can put this all behind you someday, and you’re not going to be perfect and you’re hard to accept that.
Bill Gasiamis 1:24:17
You mentioned two chapters of my book, chapter one, mindset, and I think chapter eight is community building the right community around you. And it’s so important your mindset needs to be able to focus the majority of the time on the positives and where you’re heading and where you want to be and where you want to go. And it’s allowed also to, every once in a while get negative and think about the terrible things and all that kind of stuff, you know, because it’s part of the cycle, and it’s part of the ups and downs.
Bill Gasiamis 1:24:50
But if you spend some time there, but then spend the majority of your time focusing on your goal and not not the timeline to get to your goal. Just the goal where it is, then you’re likely to move closer toward it. And also, if you surround yourself with encouraging people and people who are going to support your desire to overcome things and be better, then you’re more likely to get there as well. Because if you got those, those negative nancies around you, oh my gosh, that’s even harder.
Donna Lawrence 1:25:26
I know, and the internet’s horrible.
Steve Lawrence 1:25:30
Parts of it is there. There are, there are good resources out there.
Bill Gasiamis 1:25:34
But Instagram, recovery after stroke on Instagram, I mean, you come to my podcast. There’s no negative answers there. They’re not allowed. But also, isn’t that amazing? I’m followed by about five and a half 1000 people, I think something like that. And I put a post up, and all you get is amazing responses about where they’re at, where they’re going, how they’re coming along. Sure, you also get the people going. I never got a good result out of that, or never. But nobody comes on there and gives anybody a hard time or calls us, you know, crazy, or anything like that.
Bill Gasiamis 1:26:10
It’s all positive. It’s all about trying to put the information out there and get people over the line in something that’s a difficult time, and all the questions that I ask are questions that I was curious about, or somebody has contacted me and said, Can you ask the community this? Because I want to see what happens. And we’ve answered questions like, do you hear voices in your ear after after the stroke, you know? And I thought, There’s no way that’s related to the stroke. And of course, on the stroke side.
Bill Gasiamis 1:26:40
Some people hear voices in their ear that aren’t really there, and at the beginning, it was driving them crazy, and now they’re just getting to understand it and used to it, and they kind of ignore it like that’s what that’s what I was looking for. I’m glad that that community kind of thing exists, and that the podcast exists, and people like you reach out to share. And what’s really cool is that you’re doing what a lot of other stroke survivors do instinctively, is immediately think about helping other people.
Bill Gasiamis 1:27:14
That’s just brilliant to me, like that’s so great that we do that. I i Even catch myself out doing it, and every once in a while ago, you never would have done that stuff before. Like, what are you doing? Who are you? Who is this person? You know, it’s really awesome.
Donna Lawrence 1:27:32
I think it everything that happens to you, happens for reasons, but I think it changes the perspective that you have in life. But I know even like, you’ve probably got people that don’t have caregivers or that do have caregivers and and that’s another aspect that it’s it’s hard. There are days that, mentally, it’s hard at first for god, the first year was just like, whoa, you know, how am I going to you?
Steve Lawrence 1:28:10
Do need that community? Yeah, without her, like, I wouldn’t have been able to talk to you today, or think about would have jumped out the window or cut my leg off.
Bill Gasiamis 1:28:21
Yeah, don’t go there yet. No, follow all those other paths. Look, guys, it’s been a real pleasure to chat to you both. Thank you so much for being on the podcast. I really wish you well with your upcoming procedure. Please let me know how it goes. I just fingers crossed that it goes well for you. And yeah, thanks for reaching out. I really appreciate you sharing your story.
Steve Lawrence 1:28:46
Thanks. Yeah, we will. Thanks for having your podcast and and helping people with this is great. Lot of people are going to get better with the community.
Donna Lawrence 1:28:56
Yeah, and information.
Steve Lawrence 1:28:59
Thanks, buddy.
Bill Gasiamis 1:29:00
Well, that’s it for another episode. I hope you found Steve and Donner’s story of stroke recovery after two years as insightful and as inspiring as I did, their perseverance through challenges like sensory overload and rehab shows the importance of support and resilience. A huge thank you to everyone who has left a review. It helps others find the podcast, and it provides vital support for stroke survivors in need. If you haven’t yet, please consider leaving a five star review and sharing what the show means to you on iTunes and Spotify.
Bill Gasiamis 1:29:36
The more people interact with iTunes and Spotify, the more Spotify and iTunes will make the podcast viewable and put it in front of people who need it. For those watching on YouTube, remember to leave a comment. I love receiving your comments, and I will respond to all of them, like the episode and subscribe to the. Channel to get notification of future episodes. If you’d like to support the podcast further, you can do so by subscribing to our Patreon page at patreon.com/recoveryafterstroke, your support keeps this podcast going and helps us continue sharing these powerful stories.
Bill Gasiamis 1:30:20
If you’re a stroke survivor with a story to share, come and join me on the show. It’s a great time to join me. The interviews are not scripted. You do not have to plan for them. Just come as you are and share your experience. If you have a commercial product or a service that supports stroke recovery, consider being a part of a sponsored episode. Visit recoveryafterstroke.com/contact, fill out the form and we’ll connect via zoom. Thanks so much for tuning in. Your support means the world to me, and I look forward to seeing you in the next episode.
Intro 1:30:55
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals, opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed all content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for information or purposes only, and is largely based on the personal experience of Bill Gasiamis.
Intro 1:31:25
The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.
Intro 1:31:49
Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content. If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be call triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.
Intro 1:32:14
Medical information changes constantly. While we aim to provide current quality information in our content, we do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency, or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide, however, third-party links from our website are followed at your own risk, and we are not responsible for any information you find there.
The post 2 Years Post-Stroke: Steve Lawrence’s Inspiring Story of Recovery, High Blood Pressure, and Sensory Overload appeared first on Recovery After Stroke.
Overcoming a Cavernoma and Hemorrhagic Stroke: Rachel Paverman’s Inspiring JourneyWhen it comes to medical conditions that are both rare and life-altering, few people are familiar with the term “cavernoma.” Even fewer have experienced the terrifying ordeal of a hemorrhagic stroke caused by this condition. Rachel Paverman is one such individual. Her journey from diagnosis to recovery offers a powerful story of resilience, determination, and hope that is both inspiring and informative for anyone navigating similar challenges.
What is a Cavernoma?A cavernoma, also known as a cavernous malformation, is a cluster of abnormal blood vessels, typically found in the brain or spinal cord. These vessels can be prone to leaking blood, leading to various neurological symptoms, including seizures, headaches, and in severe cases, hemorrhagic strokes. Unlike more common stroke causes, cavernomas are often congenital, meaning that individuals can live with them for years before any symptoms appear.
Rachel’s Diagnosis: From Cavernoma to Hemorrhagic StrokeRachel Paverman’s story began in June 2019 when she started experiencing troubling symptoms, including difficulty swallowing and neurological issues. After an initial misdiagnosis of an aneurysm, further tests revealed that Rachel had a brainstem cavernoma—a condition that would soon lead to a series of life-threatening events.
In September 2019, Rachel underwent her first surgery to address the cavernoma. However, her battle was far from over. Just a few months later, in December 2019, she experienced a hemorrhagic stroke due to a second bleed from the cavernoma. This event necessitated a second surgery, which unfortunately did not fully resolve the issue. Rachel’s condition worsened, leading to a third surgery later that same month.
The third surgery, which took place at the end of December 2019, involved a different approach and successfully removed the cavernoma. However, the damage caused by the hemorrhagic stroke left Rachel with significant challenges, including paralysis on her right side and hearing loss in her left ear.
The Road to Recovery After a Hemorrhagic StrokeRecovering from a hemorrhagic stroke is a long and arduous process, and Rachel’s journey was no exception. After spending over two months in rehabilitation, she faced the reality of living with the lasting effects of the stroke. Her right-side paralysis required ongoing physical therapy, and her hearing loss made social interactions more challenging.
Despite these obstacles, Rachel has embraced her new reality with resilience and positivity. She continues to work on her recovery, participating in physical and occupational therapy multiple times a week. Her story is a testament to the importance of perseverance and the power of maintaining a positive mindset, even in the face of seemingly insurmountable challenges.
Sharing Her Story: From “To the Abyss” to AdvocacyRachel’s experience with a cavernoma and hemorrhagic stroke inspired her to share her journey with the world. In her memoir, “To the Abyss,” she chronicles her experiences, offering readers an intimate look at the physical, emotional, and psychological challenges she faced. Her book has become a source of inspiration for others dealing with similar conditions, providing hope and encouragement for those navigating their own recovery journeys.
In addition to her writing, Rachel volunteers with the Alliance to Cure Cavernous Malformation, an organization dedicated to supporting those affected by cavernomas. Through her advocacy work, Rachel continues to raise awareness about cavernomas and hemorrhagic strokes, helping others find the resources and support they need.
Lessons from Rachel’s JourneyRachel Paverman’s story offers valuable insights for anyone dealing with a cavernoma, hemorrhagic stroke, or other serious medical conditions. Some key takeaways from her journey include:
- Early Detection is Crucial: Cavernomas can be present from birth but remain undetected until symptoms arise. Regular medical check-ups and paying attention to unusual symptoms can lead to earlier diagnosis and treatment.
- Patience and Positivity in Recovery: Recovery from a hemorrhagic stroke, especially when caused by a condition like a cavernoma, is a slow and challenging process. Rachel emphasizes the importance of being patient with oneself and maintaining a positive outlook, even when progress seems slow.
- Support Systems Matter: Rachel’s recovery was supported by her family, healthcare professionals, and the broader community. Having a strong support system can make a significant difference in the recovery process.
- Advocacy and Awareness: Sharing her story through her memoir and volunteer work has allowed Rachel to help others and raise awareness about cavernomas and hemorrhagic strokes. Advocacy can be a powerful tool for healing and for supporting others who are going through similar experiences.
Conclusion: A Journey of Resilience and HopeRachel Paverman’s journey from diagnosis to recovery after a cavernoma and hemorrhagic stroke is a story of resilience, hope, and the power of the human spirit. Her experience serves as a reminder that even in the face of severe medical challenges, it is possible to find strength and make a meaningful recovery. For those affected by cavernomas or hemorrhagic strokes, Rachel’s story offers a beacon of hope and a roadmap for navigating the difficult road to recovery.
As Rachel continues her journey, she remains committed to helping others by sharing her story and advocating for awareness and support. Her message is clear: no matter how challenging the circumstances, with determination, patience, and support, it is possible to overcome the obstacles that life presents.
Rachel Paverman’s Recovery from Stroke, Cavernoma & Hemorrhagic StrokeDiscover Rachel Paverman’s inspiring journey from cavernoma to hemorrhagic stroke recovery. A story of resilience, hope, and determination.
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Support The Recovery After Stroke Patreon PageHighlights:
00:00 Introduction
01:03 Cavernoma And Early Symptoms Of A Stroke
07:01 Life After Surgery and Early Recovery From Cavernoma
13:03 Current Life and Adaptations
25:30 Writing A Book
32:39 Emotional And Mental Recovery
43:28 Dealing With Tarsorrhaphy
50:13 Hearing Issues After The Surgery
1:03:52 Lessons From The Stroke
Transcript:
Introduction Cavernoma – Rachel Paverman
Bill Gasiamis 0:00
Hello everybody, and welcome to episode 318 of the recovery after stroke podcast. In this episode, I’m honored to share the extraordinary journey of Rachel Paverman, who faced a cavernoma and multiple brain hemorrhages turned her life upside down.
Bill Gasiamis 0:18
At just 25 years old, Rachel underwent three brain surgeries, each more challenging than the last, leaving her with significant physical and neurological deficits. But Rachel’s story is not just about survival, it’s about resilience, finding purpose and redefining life after a traumatic brain event.
Bill Gasiamis 0:39
Join us as we explore Rachel’s path to recovery, the lessons she learned and the hope she offers to others facing similar battles. This is an episode that will leave you inspired and uplifted.
Bill Gasiamis 0:52
Rachel paverman, Welcome to the podcast.
Rachel Paverman 0:55
Thank you so much for having me. I’m so happy to be here.
Bill Gasiamis 1:00
Thank you for being here. Tell me a little bit about what happened to you.
Cavernoma And Early Symptoms Of A Stroke
Rachel Paverman 1:03
Yeah so back in 2019 when I was 25 years old, I was traveling for work a healthy 25 year old just started having her career. At this time, I live with my boyfriend, I was working a full-time advanced position where I traveled internationally as well as domestically, and I was doing really well at the start of my young career.
Rachel Paverman 1:31
I also worked in sports too, so I had a really great time doing that, and then one morning I woke up and I was having trouble swallowing, and I was having other weird neurological symptoms. I couldn’t hold my pen as tight or do my makeup in the morning, and I would get dizzy at random times, and I couldn’t really put my finger on like, what exactly was happening.
Rachel Paverman 2:00
So I think it took about two months. So this started in June, and in September of 2019, I had a MRI, which showed they thought at the time that it was an aneurysm, but what it actually was something called a cavernous malformation, and i t was on my brain stem, and it was about three centimeters.
Rachel Paverman 2:30
So I did have my first operation an open brain surgery on September 26 of 2019 to remove it. From there, I went to rehab, and I was doing better, and then in December of 2019, early December, I had another bleed. So the cavernoma was still in fact in my brain, and they had not realized that.
Rachel Paverman 3:00
So I did have a second lead at that time, which then led me to have a second surgery on December 10 to remove it. My neurosurgeon was out of the country at that time, so one of his colleagues performed the surgery, and then in the next couple of weeks, when I was in rehab, I had further decline, to the point where I wasn’t able to talk or sit up on my own or walk or hear or see anything.
Rachel Paverman 3:34
So I was in the process of having a feeding tube put in, and they called for an emergency surgery for me, I was just declining so quickly, and at that time, they went through a different site, so they went through the back of my brain, and from that they realized that the cavernoma was still there, and It had exploded in my brain stem, so I had hydrocephalus and all these other things going on, and I was left with a multitude of deficits.
Rachel Paverman 4:10
But on December 30, that was my third surgery, and I spent about two months in rehab, but I had my third surgery at that point, and at that point it was fully removed. So I’m not left with a cavernoma any longer, but I’m left with a a bunch of deficits.
Bill Gasiamis 4:35
The obvious question is, how did they miss it two times? What Is that even a thing like, what, what went on there? Do you, I don’t even know how to say it, like I have. They’ve been able to explain that?
Rachel Paverman 4:50
Yeah. So the thing is, like with cavernomas, we I was afraid at the time to do research, which is kind of stupid on my part. I was really distrusting my surgeon, who was the chief of Neurosurgery at the hospital that I was at, so I knew that he was a great surgeon, but what I didn’t realize was that he wasn’t a CCM cavernoma specialist who was just a great neurosurgeon.
Rachel Paverman 5:20
So I think, like, what really had happened was the brain stem is such a delicate area that he had explained to me that you can’t just move things around and try to find what you’re looking for, because it’s so sensitive. So they took out what they thought was all of it, and they just kept missing the whole thing.
Bill Gasiamis 5:43
Right, okay, so they kept missing the whole thing, and then they were reporting that they had done the job.
Rachel Paverman 5:56
I’m sorry?
Bill Gasiamis 5:57
Were they reporting that they had done the job? it was successful.
Rachel Paverman 6:01
We believed that they had got the whole thing. But I think what happened was, after my second surgery, my surgeon was out of the country, so I think that they were trying to stabilize me and hope that they would have gotten it all, but the guy that was really supposed to be devoted, it wasn’t around. So I think if he was around, and might have avoided a third surgery, but he was actually out of the country speaking at a conference about my case, ironically. So he wasn’t there, and I think I could have avoided a third surgery, if it was but I’m not really sure.
Bill Gasiamis 6:46
Yeah. So now you’re dealing with what the outcome of the third surgery was. So did you have deficits when you woke up from the second surgery, or did they come on as the cavernoma started to play up.
Life After Surgery and Early Recovery From Cavernoma
Rachel Paverman 7:01
Yeah, so I did have some deficits, but nothing to the extent of what I currently have. So what led me to have my second surgery, I had a bleed, and the bleed happened overnight, and what happened where I woke up was I was completely paralyzed on my right side, so I wasn’t able to move my arm and my leg. To this day, I’m still not able to have feeling like on that side or anything.
Rachel Paverman 7:36
So that was kind of the alarm that went off and made everyone realized, I think you need another surgery. And, yeah, I mean, it was definitely I was having some issues swallowing as well. But I think the main thing was the fact that I had lost, like all abilitlies, to move half of my body.
Bill Gasiamis 8:02
How long did you spend in hospital after that third surgery? Rachel.
Rachel Paverman 8:06
So after the third surgery, I would say I spent about eight to 10 days in the ICU, and then I was moved to a step down unit, and then from there, I was transferred to an inpatient rehab facility, and I spent about a month and a half there. So I was in the hospital until the end of February.
Bill Gasiamis 8:34
And then when you went home, what challenges did you experience physically?
Rachel Paverman 8:40
Yeah, so I was released from the hospital on February 22nd and the covid pandemic started on March 16th or 17th. So I had just started in rehab, and I was so early on in my recovery that I really didn’t know what to do on my own, and shortly after I started at therapy, my therapy had shut down because of the pandemic, so I was really left on my own with my mom and my stepdad, and we’re kind of just figuring it out on our own.
Rachel Paverman 9:20
At this time. I lived with my boyfriend at the time, but I moved out and moved in with my mom because he was still working, and I was really afraid, so fresh out of surgery, to be exposed to covid at the time, it was so such a scary thing, so.
Bill Gasiamis 9:46
Yeah, you’ve just had all these interventions, and then you’ve come home and you need to repair and recover and heal and you’re hearing about covid and we don’t know anything about it, and it’s pretty dramatic.
Rachel Paverman 9:59
Yeah, yeah. You know, it’s funny. I actually thought, like, it was so crazy to me that I had brain surgery, and then it was so crazy to me that covid shut the whole world down that I got out of the hospital and I’m like, Is this real life? Like, am I dreaming? Like, this is so crazy, like everything was just so bizarre to me, like I couldn’t wrap my head around it.
Intro 10:28
If you’ve had a stroke and you’re in recovery, you’ll know what a scary and confusing time it can be. You’re likely to have a lot of questions going through your mind, like, how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse? Doctors will explain things, but obviously, you’ve never had a stroke before. You probably don’t know what questions to ask. If this is you? you may be missing out on doing things that could help speed up your recovery.
Intro 10:58
If you’re finding yourself in that situation, stop worrying and head to recoveryafterstroke.com, where you can download a guide that will help you. It’s called “Seven questions to ask your doctor about your stroke”. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website now recoveryafterstroke.com, and download the guide. It’s free.
Bill Gasiamis 11:28
Your 25 year old self has kind of crossed that threshold where you realized you were unwell and you’re going through all this stuff to try and heal your brain and trying to get that particular blood vessel, the cavernous malformation, out of there. Before that event, what was life like? How did you go about day to day life, and were there anything? Any signs or symptoms that you look back on now and think or maybe that was giving me some information about something I didn’t know was in my head.
Rachel Paverman 12:15
Yeah, definitely. So I all my life, I was always told my doctors that I was in the gray area. I was told I have Crohn’s disease, I didn’t have it. I was told I had Fibromyalgia, I was told I had like Hypothyroidism, and I all my life I was just always in the gray area, and I never could figure out what was the root cause of me not feeling well. So for me, a lot of the symptoms that I had were gastrointestinal. I had so many issues with my stomach, and I don’t know if it’s because I was anxious, because my brain wasn’t right and something was off in my brain.
Current Life And Adaptations After Cavernoma
Rachel Paverman 13:03
But I also remember, like over the years. So for as long as I can remember, I would always have like, these random disease spells, and I’ve had them forever. So for me, I didn’t know that it wasn’t normal to in fact, until the cavernoma was taken out, and I realized, like, okay, that’s not really something that should have been happening, but I didn’t really know any different.
Rachel Paverman 13:32
And then my surgeon also told me that it’s something that I was born with, and then it was likely just growing over the years, and then when I did finally get to figure out what it was and that I had this in my brain, I had already experienced like two, I think it was two bleeds at that time. So my surgeon said that he can tell by the color of blood to see how many bleeds that I have experienced. And by this time it was removed, I think they said that I have total of like five fleets.
Rachel Paverman 14:14
So yeah, so I definitely had some prior to discovering it, which I think that might have an idea as to when those happened. And I think that one of them was when I woke up and had issues swallowing, but I’m not quite sure when the other one was.
Bill Gasiamis 14:34
Right, okay, that’s interesting, right? So waking up and not being able to swallow. What did you think that you just forgot to swallow, or you didn’t know how, or there was something wrong with your throat?
Rachel Paverman 14:49
Yeah, it was. It’s the craziest. I can’t even explain like, it’s like, it’s not that I couldn’t swallow. I knew how to swallow. I just like my brain wasn’t communicating with my body to tell me to swallow. So I know, I knew I had water right now, I knew how to swallow it, but when I went to swallow it, my brain just like they felt like it was just a block on my brain that wouldn’t let me do it. It was, it was really scary, and I was brushed off by a lot of people who thought, Oh you’re fine, It’s just your anxiety, like you should go see a therapist.
Rachel Paverman 15:33
So I started doing therapy. I went to my primary care physician, and she told me that she would do scans on my throat to see if maybe I had something going on in my throat or something. So nobody was looking at my brain as a cause. They were looking at everything else.
Bill Gasiamis 15:58
Yeah, which kind of makes sense that they wouldn’t think of the brain, because it could be another a number of other issues. You know that your your age is an issue. They look at you and they say, well, she’s very young. Uh, she’s probably doing something crazy, or, who knows what? How long did it last for the not being able to swallow, though, and also, did that mean that you didn’t eat food as well?
Rachel Paverman 16:29
So it started in June, and then I didn’t get my diagnosis until September, so it wasn’t too, too long, but I didn’t ever have an issue where I wasn’t able to eat, but I would cough a lot when I was trying to, like, sip on water, it would just, like, slip down my throat before I could swallow it, and then with food, I just had to eat very slow, because I it took a while for my brain to connect to understand that I needed to swallow it.
Bill Gasiamis 17:07
Yeah. So what’s life like now? What? How do you go about life? How to how have you adjusted to your body? What are the things that you do to occupy time with.
Rachel Paverman 17:24
Of course. So I’m almost five years out. In September, it will be five years. So I’m currently still doing physical therapy three days a week, occupational therapy two days a week, and I published a memoir. So a couple years out, I have, I wrote down all the memories that I have of my surgery during covid, and then I spent a lot of time editing it and just going through that and creating journal entries to add on, and I published a memoir in 2022 some of the things that I love enjoying now.
Rachel Paverman 18:09
Which are a little bit different from what I was able to do in the past, but I always love working out, so I have a bike at home, So I do that, and I do adaptive CrossFit. I love listening to audiobooks and podcasts. I love going to parks and cooking. And then something else that I’ve been doing is the organization that works closely with cavernous malformation is called Alliance to care Cavernous Malformation. So I’ve been volunteering with them, and it’s changed my life, to say the least.
Rachel Paverman 18:47
It’s it’s been absolutely amazing to me. It’s an organization that’s for that is for those that are affected by cavernous malformation, and they just bring research community support and multiple resources for the community and everyone affected by CCM. So it’s a cause that’s very close to my heart, and although I don’t have a capitalist malformation in my brain anymore, I think that it’s so important to just create a future that could be CCM free for the future generations that are dealing with the genetic type, or if they have a type like I have, that’s sporadic, that wasn’t able to be operated on.
Rachel Paverman 19:37
So my mission in myself, I should just make sure that the there’s hope for the future, and make people see that meeting positive can really affect like the way they recover and the way that they see things, and also the alliance structure is the. They introduced me to the company that I now work for. So I work for a company called Avid Therapeutics, and they are a bio pharmaceutical company, and what they’re doing is looking to find a cure for CCM. And they took me on early in the year, and I’ve been working with them doing a lot of like social media, internal events as well as branding.
Rachel Paverman 20:28
And I’m just so happy to be a part of the team and kind of just work closely with them to help them meet their goals, and my goals are aligning with their goals, so it’s really just a great master. I’m so happy to be working there and kind of back in the workforce again.
Bill Gasiamis 20:47
Just a quick break, and we’ll be right back with Sonny’s incredible journey. But first, I wanted to take a moment to talk about something that’s been a big part of my own recovery journey, and that is my book, The Unexpected Way That A Stroke Became The Best Thing That Happened. In it, I share my personal story and that of nine other stroke survivors who have turned their challenges into opportunities for growth. If you’re looking for inspiration and guidance on your path to recovery, this book is for you to get your copy, just visit Amazon or visit recoveryafterstroke.com/book.
Bill Gasiamis 21:22
What was it about volunteering that was important before you knew all the benefits of it, you decided that you’ll volunteer. Why did you make that decision?
Rachel Paverman 21:35
So, I made that decision because I hadn’t. I’ve been I was always so interested in my job and what I did my career, and I spent a few years trying to figure out what my purpose was, and I was really focused on recovering, and I’m at the point now where I wanted to get back into the workforce slowly. So they really helped me integrate back into the workforce and use my brain in different ways than I was used to working. So it was a really great stepping stone for me, and I’m so grateful that I had the opportunity, and do still have the opportunity to do that.
Bill Gasiamis 22:21
Yeah. So I volunteered as well. About a year after I became unwell, I still had the arteriovenous malformation in my head for a few more years after that, at the Stroke Foundation, and it was really good to volunteer to do something for somebody else, and then I met other people there that were like me, and that’s kind of the first time I started to get involved with a community around stroke. And everyone was injured in their own unique way from stroke, and it didn’t, and it kind of, I met people that I felt like knew what it was like to be me and vice versa.
Rachel Paverman 23:14
Yeah, it’s so important in the community.
Bill Gasiamis 23:17
And it was something,. It’s the it’s a really cool place to find community. And immediately people know, understand you. Immediately people know what you’re going through, what’s happened. And it’s a very interesting, unique experience to co to go from nobody knows what I’m going through. I don’t know how to explain it to people. Nobody gets me. Everyone misunderstands me to immediately being understood and immediately people empathizing with your situation.
Rachel Paverman 23:47
So I totally understand that. Yeah, I totally agree with you. I think that the community is such a important part of recovery and just having people that relate to you. It’s just like an indescribable bond that you can’t really experience withpeople that you’ve known your whole life, that that might not know like what you’re going through. So I totally agree with that
Bill Gasiamis 24:18
You seem like you’ve taken all of this stuff in your stride, just by the short conversation that we’ve had so far. But was it really hard to wake up and discover that a lot of your body has been impacted negatively?
Rachel Paverman 24:33
It was definitely a tough pill to swallow at first, and I think that there are days that I still do struggle with that I think that it’s only normal to have, like, good days and bad days. I just try to stay as positive as I can be, because I feel like that’s the only thing I can do, like, there’s only so much that you have control over. Here, and I think that if that’s something that I can control, I want to control that.
Rachel Paverman 25:06
And yes, it’s tough that, you know, I was 25 and active and traveling and hiking and snowboarding and stuff, and I can’t do that now, but I’m just very grateful to be alive, because it could have ended a very different way, and I just have to remember to be grateful for that every day.
Writing A Book: To The Abyss
Bill Gasiamis 25:30
Let’s talk about your memoir a little, do you have a copy there by any chance?
Rachel Paverman 25:35
I do, yes.
Bill Gasiamis 25:37
Just hold it up to the camera.
Rachel Paverman 25:40
This is my memoir. It’s called To The Abyss.
Bill Gasiamis 25:45
Yep, and give me an idea of what the chapters are about. What’s in there?
Rachel Paverman 25:52
Yeah. So it’s really a book that’s it’s very heavy content, but I try to make it as light as that can be.
Bill Gasiamis 26:01
That’s quite the task is that your first book?
Rachel Paverman 26:06
It is, yeah. I’ve never written.
Bill Gasiamis 26:11
So, not only are you not a writer and it’s your first book, you also have to write about some of the heaviest content that you could possibly write about, and your thoughts are on the reader, it’s to kind of try and make it easy for them to read yeah.
Rachel Paverman 26:27
Yeah. I mean, I’ve gotten a lot of feedback that says that I did a good job at trying to make it easy for people to read. A lot of people have told me, like, it’s a book they just couldn’t put down because they just want to know, like, what happened next.
Rachel Paverman 26:43
So it’s basically just a recollection of what I remembered from life prior to my cavernoma, life during, the discovery of my cavernoma and my surgeries, because I do even when I was at the point where I wasn’t able to talk, I still have very vivid memories of what went on that part of my brain wasn’t affected.
Rachel Paverman 27:11
So there would be times where I wasn’t able to speak, but I knew exactly what was happening, so I wrote that all down, and then the end of the book is just turned on trees for about a year. So I did that, and it’s just documenting like what the early stages of life are like for me after I had all the surgeries and stuff.
Bill Gasiamis 27:37
Why did you decide to write the book?
Rachel Paverman 27:40
So what really inspired me to write a book is that my mom used to sit with me in ICU, and I used to not be able to see anything, so she would get memoirs from other people who had brain injuries and just read them to me. So that’s really what inspired me. There was one specific author that, had her surgery somewhere close to where I lived, and then she had her rehab experience at the same hospital that I have it at. So I was really inspired by her story.
Bill Gasiamis 28:23
Why is it important to read other people’s books and to get an understanding of other stories about stroke recovery? Now you’re, you’re reading the book X amount of years out after the stroke, right? What are you trying to do, what? How are you trying to use that book? What’s the point of it?
Rachel Paverman 28:44
The point of my book is to really just inspire other people and show other people, especially the CCM community, that anything is possible, and just be positive and try to put your best foot forward every day, and what we’re going through is definitely difficult, and you know, I I can understand that, and I just want other people to know that it’s okay and that I understand there’s other people that understand, and there’s something good on the other side of it.
Bill Gasiamis 29:22
But some people, so you may know that I’ve written a book The Unexpected Way That A Stroke Became The Best Thing That Happened. It’s basically describing that there’s some good things that come at the end of it afterwards, and it comes through personal growth and by doing certain things that help improve your condition. Don’t matter how bad your situation is, you can always improve your condition somehow.
Bill Gasiamis 29:48
And it’s really that. It’s about telling people that down the road, when you reflect back, there might be some personal growth, there’s some opportunities that came up as a result of your. Or experience that you never imagined were possible, is that your experience all these are there, are there things that you reflect on that seemed really terrible at the time, but looking back, there are some silver linings and some awesome opportunities that have appeared.
Rachel Paverman 30:20
Definitely. I mean, I was just saying to someone yesterday, obviously, what happened to me was very terrible, but I lost my ability to drive. And the silver lining is that I see my parents a lot more now. I wasn’t I was never not close with them, but I see that a lot more frequently now than I used to, and it’s made us closer. I’ve also got closer with my sister, and I’ve also been, you know, just I’ve been given opportunities that have only come about because I’ve I’ve went through what I’ve went through and I experienced sort of experience, and I just life is just like different for me now.
Bill Gasiamis 31:10
Yeah, what are the some of the major challenges that still trying to overcome right now?
Rachel Paverman 31:19
For me, I would say the biggest challenge is accessibility. So I use a walker, and I also use a wheelchair depending on what I’m doing or where I am. And I think, like I actually listened to a podcast recently, and someone made a very good point that if you’re disabled, like we’re not living in a disabled world. So we’re trying to navigate in a world of people who aren’t really, I mean, the world isn’t accommodating always to people with disabilities.
Rachel Paverman 31:58
If you never experience that, I don’t think you’d like realize it, but because I I don’t think I did. But now that I’m living in that world, I see, you know, is there a push place to get in, all the doors? Is there ramps? Is there grab bars in the bathrooms? And I’m finding that there’s really, there are in some places, but overall, I would say no, and it’s it’s really unfortunate, and I think that maybe it’s something that eventually the world can change in the future, but as of right now, that’s something I really struggle with.
Emotional And Mental Recovery After CavernomaBill Gasiamis 32:39
You struggle with it, physically, obviously, navigating the obstacles, but you also struggle with it, emotionally and mentally.
Rachel Paverman 32:48
I do, so I see therapist, and he’s definitely helped me a lot. But I think, like, the one thing that I really struggled to move past is the fact that, like, my life is so different now, and I just, I think that, like, my life before, I always say, like, I don’t know who that version of Rachel is anymore. I don’t even remember, like, what it’s like to get in my car and go get a cup of coffee or just be able to do like what I want on my own time. I depend on a lot of other people for things that I used to be able to do on my own. So that’s something I think mentally, that I struggle with the most.
Bill Gasiamis 33:43
Where do you live? Which part of the United States.
Rachel Paverman 33:48
I live in New Jersey.
Bill Gasiamis 33:51
And what’s it like navigating the sidewalks and the roads and all that kind of stuff with a wheelchair?
Rachel Paverman 33:56
So it really depends on the town and I think for the most part, I have no key time doing that. But I said earlier, I like to go to parks, and the issue with that is that there aren’t a lot of accessible parks, and there I found a few, and those are the ones that I frequent and visit most often. But I struggle with like, I guess, you know, like, I’ve had surgeries in New York City, and there’s no way that I could live in New York City.
Rachel Paverman 34:35
I feel like the roads there and the sidewalks are so difficult and uneven and but here in New Jersey, I think, like the parks and stuff, and trying to find places where I can go to enjoy I struggle with more so than I guess, like the sidewalk scenario.
Bill Gasiamis 34:57
Yeah, many years ago we traveled to. Athens in Greece, and it was just after my first brain bleed, when I say just after, it was about nine months, 10 months after my first brain bleed, and my condition still wasn’t resolved. But of course, I had the opportunity to understand what it was like to have a brain injury and a condition that made life quite difficult at the time, and I remember trying to walk on their particular footpaths, what we call footpaths, you guys call sidewalks. And they don’t really have anything that’s useful to actually walk on.
Bill Gasiamis 35:50
I mean, it’s so terrible the condition of the paths in the city of Athens most normal, able bodied people wouldn’t be able to navigate them properly because they’re so narrow, they don’t fit a number of people in there. Some of them have steps from the buildings, decreasing the space that people have to walk on. Some of them have trees in the middle of the path, and they’re made out of what is now very shiny marble that maybe wasn’t very shiny back in the day when they first built it. So they’re very slippery, so in the rain, they’re really treacherous to navigate.
Bill Gasiamis 36:34
And when we were there in 2013 my cousin has an injury to one of her legs, and as a result, she can’t walk the way that able bodied people can walk. She really relies on steady ground, a good surface, with grip, etc. And she took us out into the city, and just helping her get to and from the car and the destination that we were going to was quite a task, because she was, you could tell she was concerned about finding her feet the entire time, like every step was a safe step for her to take, and then at one point, she slipped and fell and she broke her other she fractured her other leg, and it was such a terrible example of how inaccessible a lot of places are now.
Bill Gasiamis 37:35
Where we live in Melbourne, in Australia, it’s very accessible in that they’ve taken. They’ve put a lot of time and thought into the roads and the paths and how people might navigate a path. Most paths are quite wide, two people could easily walk on a path going either direction or even next to each other, and then they’ve got those little in the curbs, they’ve got those little ramps that go down one curb and up the other curb. So if you had a wheelchair, you could easily roll down the curb and then you can go up the next one. And they’re not they’re not that steep at all.
Bill Gasiamis 38:14
They’re very well maintained. And one of the things that they’re trying to do now is make public transport more accessible. So when you go to a train station, anybody in a wheelchair should be able to just drive straight into the train and park in a spot that’s been allocated for people with wheelchairs. And also, we’ve got a tram system here, and the sort of lagging behind in that area of getting the trams to the right state where people can also drive up and enter the tram in exactly the same way that they would have trained.
Bill Gasiamis 38:56
So there’s only in the particular area that we live the the tram line is missing some platforms at certain stops, and even that, when I look at it, and I think about somebody in a wheelchair trying to get say to the central business district from our area, and if they can’t get to the train station, and they go by tram. They have to get to a tram that’s to stop, that’s further away, perhaps from where they live or where they want to go, and if you have to do that in the rain, that’s really uncomfortable.
Bill Gasiamis 39:34
If you have to do it in cold weather, it’s uncomfortable. In hot weather, it’s really uncomfortable. It makes the effort that somebody in a wheelchair has to put in way more effort they require way more effort to get the same outcome that other people would have. You ever found yourself in a situation where you’re in the wheelchair and you’re stranded or you’re impacted by the weather, and then that’s kind of ruined your intention to go to a particular place.
Rachel Paverman 40:09
Well, it’s not weather related, but something comes to mind that actually happened yesterday, I was at a venue for a sporting event, and there was supposed to be a ramp that or a lift that brought you up the steps, you go on the wheelchair, and then it brings you up the steps. It’s like automatic, and it wasn’t working. So it wasn’t available for me to use with a wheelchair.
Rachel Paverman 40:45
So the security guard was like, oh, you know, can you walk like, are you able to walk like, I mean, yeah, but I can walk, but do I have to? And it was only a few steps up, which was fine, and I had no problem doing it, because I’m able to, but I really felt for people who could have been there that day, that were in a wheelchair, that weren’t able to walk, and what would happen then, you know, so It’s just interesting to see, like, when you’re when you’re somebody that’s in a wheelchair that needs that type of health.
Rachel Paverman 41:28
It’s hard for people who don’t understand that to like, relate to it and understand like, why those things are so important. And yeah, I think too. I went to a wedding a few months ago, and the vet like, it’s, you know, the venue was not very accessible, and the reasoning behind that was because they said it was a historical venue, so that way they were grandfathered in. And I had a family member that was in a wheelchair, and she really struggled to get around also.
Rachel Paverman 42:10
So for me, I was in a wheelchair, but I’m able to walk and get around and get through those difficult situations, but there are people that can’t, and it’s just really sad sometimes to see like how the world is, and people don’t always understand that, and they’re not always empathetic to that.
Bill Gasiamis 42:33
Yeah, they’re not willing to help out, because they don’t understand how important it is to go down that path and help somebody in a situation like that, when a historical building is the excuse, does that mean that they are not allowed to interfere with that historical building, or they are or they have an exemption from making it accessible?
Rachel Paverman 43:00
I’m not actually sure, but I think when we were told that, I believe that it was because they were grandfathered in, so that way they didn’t feel like they needed to make it accessible, because they had gotten away with it not being accessible, and they wouldn’t get in trouble for that. But I can’t really speak on it, because I’m not exactly sure, but that’s kind of what I was taking away from it.
Dealing With TarsorrhaphyBill Gasiamis 43:28
Yep. Fair enough. I also noticed your one of your lenses on your glasses is, what do we call it?
Rachel Paverman 43:38
It’s fogged out yeah.
Bill Gasiamis 43:40
Fogged out. So what does that help you deal with?
Rachel Paverman 43:45
So after my surgeries, I had a Tarsorrhaphy So they had essentially stitched my eyes shut because I wasn’t I don’t produce tears and I don’t blink. So on there to protect it, and then I had that on for about two years, and they opened my eye up, but I now experience double vision. So when I blur out one side of my glasses, it helps relieve the double vision and rest my eyes a little bit.
Rachel Paverman 44:22
Because I also have nystagmus, so my eyes are also bouncing up and down like a basketball all the time. So that mixed with seeing double of everything is very exhausting, so I use these when I’m on the computer or on my sunglasses to kind of help make it a little bit easier on my eyes.
Bill Gasiamis 44:50
When you say it’s exhausting, is it physically exhausting?
Rachel Paverman 44:54
I honestly, I think it’s mentally exhausting. I will, It’s so hard for me, like, when I’m having a conversation with somebody, to focus on their eyes, and there’s right legs and my my eyes are moving around. So there’s just a lot going on in my head. So when my eyes aren’t right, it kind of just, like, adds to that. So for me, I think it’s more mentally exhausting, but it’s also physically exhausting at the end of the day.
Bill Gasiamis 45:29
Yeah, when you say mentally exhausting, it’s not psychologically exhausting, although that would also impact people. I get that like it, it exhausts your brain, right? Does that tell that what you mean? Yeah.
Rachel Paverman 45:42
I think too, I was telling someone recently at supermarkets, I don’t know if you experience this, the lights are just so bright fluorescent. And I actually just heard that the reason behind that is because it makes the all the fruits and vegetables look fresher. So because wherever I’m in, like Walmart or food shopping, I have to wear sunglasses because it’s so bright, and it really just like hurts my head, and there’s just so much like stimulation happening between that and trying to look at the shelves and everything on the shelves.
Bill Gasiamis 46:27
I’m sitting here in front of a light that’s right there, and one to the left of me, and they’re fluorescent in color. They’re sort of bright white, and it’s important for having a decent image when I record, and it’s so tiring, like the one hour podcast episode that I sit here, I get through them, and I’m kind of used to it, and as soon as it’s done, the lights are off and I’m outside trying to recover, but it is so tiring, And I would love to use sunglasses on a podcast interview.
Bill Gasiamis 47:03
If I could. I never have, but it would be great, but I do, yeah, I should, but it doesn’t make a for a good visual. And it’s only an hour, it’s only an hour like it’s temporary, and it’s not every day. But I do also struggle with lights that are fluorescent in shopping centers or stores or offices or anywhere where I go. And at our house, the lights go off. There’s no lights on above my head. So if I’m sitting, unless we’re sitting and eating dinner, which is necessary to have some lighting above the head, that’s all good.
Bill Gasiamis 47:49
But if we’re sitting down, just chilling out watching TV, the lights might be on other parts of the room, further away, but next to me, there’ll be a lamp that’s got a really warm glow light globe so that I don’t have to deal with lights like that. And in our bedroom, I’ve got this little battery operated string lights, and then they’ve got little LEDs on them. You can buy them at the hardware store, and they’re really designed for they’re called, like, fairy lights.
Bill Gasiamis 48:25
They’re really designed for events. You know, you put them in the back yard when you’re having a nighttime event, and they make pretty little light features. And I use those as my night light so that it’s nice and dim. It just creates enough light so it’s not dark, but it doesn’t stimulate my head just before I go to bed, and in the in the evenings, if I wake up and go to the toilet, I try and do it in the dark. I try not to switch on any lights, because.
Rachel Paverman 48:59
Me too, I do the same thing. That’s so funny.
Bill Gasiamis 49:01
Yeah, right, okay, so that’s gotta be a thing that heaps of people do, because if I open the lights, I switch the lights on, then I wake up, and then it’s impossible to get back to bed, and then I’m not rested. Same issue. Yeah. So I’ve really got good at navigating my my house at night in the dark, and getting little jobs like that done in the middle of the night, and even getting some water. I try to make sure that I don’t switch on any of the lights. It’s just not worth it, right? Have a really massive impact on the brain.
Rachel Paverman 49:40
The same thing. The only problem is that the lights are off and I’m on the toilet or something, and my vision is so bad that I think, like, there’s someone from like, the corner of my eye on my paranoid I’m like, Oh my God. I think someone’s like, in my apartment. Like every night, and it’s obviously never the case, but my eyes are so bad, ours my brain, and it’s like tricking me into thinking something’s there when it’s not.
Hearing Issues After The Cavernoma SurgeryBill Gasiamis 50:13
Yeah, you have to rely on your ears for that then? Did you get any impact on your ear on that side as well?
Rachel Paverman 50:25
Oh, yeah. So actually, I forgot to mention, after my first surgery, to access the cavernoma, they had to cut through the surgical site is behind my left ear, and to access my brainstem, they had to cut my hearing nerve. So I have total hearing loss in my left ear, and that was a result of my surgery, rather than the fleet.
Bill Gasiamis 50:57
Okay, so that’s why is definitely impacted really heavily, and perhaps part of the reason why your book is so heavy. Do you go into detail describing the kind of challenges that you are facing with regards to your body in the book?
Rachel Paverman 51:16
Well, the problem is that, like early on in my recovery, I was very like sheltered, and because covid was happening, I wasn’t in the community so much, but I didn’t write about that in my book so much. But as I’m back in the world now and experiencing life every day, I’m realizing how much of an issue having no hearing really is and I don’t know if it’s because I have trauma to my brain and I have trouble processing sounds, or if it’s because I truly, like can’t hear.
Rachel Paverman 51:58
But if I’m in a setting where there’s multiple conversations happening at once, like there is absolutely no shot that I would be able to hear you, and it’s something that I’ve struggled with, like, almost more so than some of the other deficits, just because it’s, it’s it’s really hard to be social and to be myself when I’m not able to hear and I’m embarrassed that I’m going to say something that’s not the correct answer because I didn’t hear correctly. So I tend to stay quiet when I’m out, and that’s mostly due to the fact that I have trouble hearing.
Bill Gasiamis 52:43
Okay, so that’s a common thing. Like I hear about a lot of strokes of overs who say that they struggle with conversations even if they haven’t got hearing loss. The multiple streams of information makes it really tiring for the brain and really hard for them to keep track of multiple conversations, and they often take a step back in those situations.
Bill Gasiamis 53:12
Do you feel like you take a step back? Because what is it like? It wouldn’t be embarrassing, would it if you said the wrong thing or gave the wrong answer to a question that you didn’t hear properly? People mostly understand, don’t they? Isn’t it kind of okay or like they just what is it? Is a confidence thing? Is it a?
Rachel Paverman 53:38
I’m not exactly sure, like what it is, but I think part of it is the fact that, like, I don’t always speak up for myself, and I don’t always tell people hey, I don’t have hearing in this eye. So like, I might not always understand you, and it’s really hard sometimes to be so I have, I have a boyfriend now, and we go out a lot, and if we’re trying to be social around other people, I’m very particular about like, where I feel comfortable being and who I’m comfortable being around.
Rachel Paverman 54:14
Like, if I’m meeting new people, I would much rather meet them in the quiet of my house, rather than out at like a loud restaurant in the evening. But if I do know you, and you know my situation, and you know that it’s hard for me to hear, then I’m totally fine with being in a loud setting. But if I’m first meeting you, I’d really like to make like an impression for people to see, like the real me and not the me be out and not able to hear much.
Bill Gasiamis 54:50
I hear you. Okay, so that’s that’s pretty smart, actually. That gets you kind of gets you feeling good about. The encounter in the first place, you can build rapport with that person. You can get to know them. They can get to know you. Instead of being in a public place where you’ve met somebody and then having to tell them, I can’t say probably from this eye, or I can’t hear from this ear, and go through all of the rundown on all of the things that you can’t do, most people wouldn’t know how to react to all of that anyway, but I like that picking your location, that’s a really good way to overcome some of that.
Rachel Paverman 55:30
I just. I just want people to see my personality and see who I am as a person. Like I would like to say that I’m pretty outgoing, but if I’m in a public setting, like there’s a lot of times when I don’t show that I’m outgoing because I’m just so timid, because I’m afraid of what to say, or not being able to hear or having offered this when I say what, 10 times in a row, I don’t know. I just, I don’t know. It’s created a lot of, like, social anxiety for me. I think, like, part of it is covid, but also part of it is the fact that I have trouble hearing it.
Bill Gasiamis 56:14
Yeah. Look, I think you’re overthinking it, but it’s also good to protect yourself in that way. If you feel like you need to kind of step back. There’s nothing wrong with that as well. You don’t always have to be outgoing. You don’t always have to be the life of the party. You can take a step back and be somebody who just sort of observes and listens rather than totally gets involved.
Bill Gasiamis 56:37
There’s no issue with that. But if it’s a but if you’re overthinking it, and you’re kind of getting in your own way, that’s something to consider as well, like, if most people aren’t, if you’re in a place where you know most people, no one’s going to really take it the wrong way. If you have to say, what, what did you say? Or what was that about? But I get you trying to avoid the difficulty of a conversation that normally would flow, and then it kind of gets interrupted by all of the the Watts and the I didn’t hear that. Or can you repeat that?
Rachel Paverman 57:14
Right, It’s, it’s, actually, it’s very interesting that you say that you know people who don’t have hearing loss, but they have trauma to their brain and they have issues with processing. I always thought that it was just my hearing, but I recently started thinking that it might be like my processing as well. I had Neuropsychology testing done, and it showed that I have trouble processing. So I think that’s just exactly what it is, is that it’s hard for my brain to decipher, like one sound from another and process it, to hear it.
Bill Gasiamis 57:55
Yeah, I remember going to parties when I was first diagnosed, and had a whole bunch of neurological issues. I remember going to parties and telling my wife, like, we need to go home. It’s 930 I need to get out of here. I can’t be here anymore. It’s I’m struggling. And I was struggling with the music, the lights, the multiple people talking to me. It was physically and emotionally exhausting, and the best place for me was to not be there. So I would just go in, apologize or thank the person for the invitation and for having me there, etc. And then I would just get out of there.
Bill Gasiamis 58:35
And it was self preservation. So it’s really important to do that and not feel bad about it, if, if you have to get out of a a difficult situation when your senses are overwhelmed. I mean, it’s really important to just go I’ve had enough, or to do what you did, which is what I started doing later, which was you just turn up, and then you don’t participate too much, but you’re there, and you’re experiencing the party, and you’re with the people, but you’re kind of sitting in the dark corner where not too many people are around you, on a chair, where no one else is going to sit next to you.
Bill Gasiamis 59:17
Like I did that a lot as well, and that got me past 9:30 so that might have got me to 10:30 or 11:00, which meant that the my my wife, could appreciate being out and about and catching up with people, but also I didn’t have to run out of battery by 9:30.
Rachel Paverman 59:33
Right? Yeah, I think that’s something I struggle with too. My social battery it drains so fast, like maybe an hour, and I’m just I’m so tired. So I definitely understand that also, and I think that I used to do a better job myself, of like listening to my body sometimes, and not always being. A people pleaser, which I tend to do that a lot, and not be like, not be selfish, but be selfish and listen to my body more.
Bill Gasiamis 1:00:11
It’s important. What’s the hardest thing about this whole situation for you? What do you feel like has been the hardest thing that you’ve had to navigate?
Rachel Paverman 1:00:21
Definitely the fact that I, I’m just, I lost the old version of me. I lost my own life. And not to say that’s not, it’s my life is right now, and I love everything that I’m doing in my life. I love where I am in my life right now. But it’s just really sad sometimes to, like, look back at old photos of myself or I used to play soccer, so thinking about me playing soccer and reminiscing with my friends, and just knowing that, like, I will never be able to play soccer again or do some of things that I used to do. So for me, that’s the hardest. And I know that my life is great now, and it’s just different, but it’s it can definitely be hard to deal with that sometimes.
Bill Gasiamis 1:01:15
Yeah, have you seen some of those Paralympians that play those crazy wheelchair sports.
Rachel Paverman 1:01:25
I have seen that actually. My prospect coach also told me about they have like adaptive skiing, and she went to Colorado, and she was, she volunteered to life health with that so and I, I’ve seen like adaptive, like ice hockey and other things like that, which is so awesome.
Bill Gasiamis 1:01:47
Adaptive Ice Hockey would be good. You could still go onto the ice, have a fight with everybody, and feel quite normal. You know, skate on and straight off, however they do it. It would be really cool.
Rachel Paverman 1:02:00
Yeah, yeah. I will say, like, the world, as much as I said before that it’s not accessible. They’re also, like, super inclusive with some of the programs that they have out there for the disabled community.
Bill Gasiamis 1:02:17
Yeah, it’s getting better. I know it’s there’s a lot of work to do, but it is getting better. I see it every day because, like you, I pay attention to these things, and it’s always awesome to see people participating in well, you know, those really competitive people that they need to win and succeed at everything that they do. It doesn’t matter whether they’re missing legs or or arms or whatever, you know, but they just need to be in competition somewhere.
Bill Gasiamis 1:02:46
And I feel like there’s a lot more opportunities for people like that to find leagues where they can be competitive and get that out of their system at least, and feel accomplished or get rid defeated really badly, and then get back up and play the next game and see what they can do. And that helps create a community as well, right, a sporting community that is about sport and their passion.
Bill Gasiamis 1:03:12
But that allows for people with other conditions to attend and to get all the benefits from it right. It’s really important to get to to get the benefits from being able to attend to things. So I am liking where things are heading. But of course, there is a long, a long, long way to go in most countries. Most definitely. What is something that this whole experience has taught you?
Lessons From The StrokeRachel Paverman 1:03:52
I think it’s taught me to be grateful and to appreciate the little things in life, because for a while I wasn’t able to hold a fork or brush my teeth, or I’m still learning how to write, because the right side of my body was what was affected, and I was a variety. So I’m now learning how to live life with my left hand, so just little things like being grateful to shower and but I used to have to have health in the shower, and now I’m able to stand with the grab bar.
Rachel Paverman 1:04:35
But those are things that I now appreciate So much more, and just like being able to take a beautiful day for what it is and enjoy the sunshine, and be able to go on my like stationary bike and just like live a somewhat independent life and just have so much appreciation for it.
Bill Gasiamis 1:05:00
There are people listening that are on similar journeys to you and I going through their own stuff. What is something that you would like to tell them about this time and the challenges that they have?
Rachel Paverman 1:05:17
I think that what I would tell them is to just be patient with your body, and it doesn’t happen overnight, like we all know for an injuries take forever. I’m five years out, and I’m still seeing improvements every day, and sometimes I plateau, but I always continue, like moving forward and just be positive, because I know the vagus nerve connects the mind and the body, and it’s so important to have good mindset when you’re physically recovering.
Rachel Paverman 1:05:57
And just like taking care of yourself and eating good foods and really just being patient with yourself is the main thing. Because it’s a slow process, but it’s a process that always, well, you’ll always be improving. You know, for whether it’s a slow improvement or a fast improvement, or if you plateau a little bit you’re always going to be improving.
Bill Gasiamis 1:06:24
Your book is called?
Rachel Paverman 1:06:28
My book is called “To the Abyss”. It’s available on Amazon. And then I also have a website.
Bill Gasiamis 1:06:39
Yep, Tell us. Tell us about the website. By the way, anyone watching and listening, they’ll be able to go to the show notes to get links to Rachel’s socials and the website and the Amazon book just go to recoveryafterstroke.com/episodes and you’ll find Rachel’s episode there. But anyhow, tell us the website link.
Rachel Paverman 1:07:02
Yeah, so my website is just my first and last name. So www.rachelpaverman.com, and on there is just a little, a little bit about my story, and then I’ll link to purchase the book, as well as some photos of while I was like in the hospital and early on in my recovery, when I was writing the book, as well as I have a tab called in the media and in the alliance as well. So it gives a little information about the organization that’s very close to my heart, and then in the media is just some of the stuff that I’ve done and other podcasts and like folks chats and stuff.
Bill Gasiamis 1:07:52
Excellent. Rachel, I really appreciate you reaching out. Thank you so much for being on the podcast and sharing your story. Congratulations on your recovery so far, you’re doing an awesome job. I love the way you’re going about it. I look forward to hearing about all the amazing things that you continue to achieve down the track.
Rachel Paverman 1:08:12
Thank you so much. It was so great to meet you.
Bill Gasiamis 1:08:16
That’s a wrap for another episode. I hope you found Rachel Paverman’s journey through cavernoma and brain hemorrhage as powerful and as barring as I did. A huge thank you to everyone who has already left the review, It does mean the world to me. Your feedback is crucial for the podcast success, helping others discover this valuable content, and making their stroke recovery journey a bit easier.
Bill Gasiamis 1:08:40
If you haven’t left a review, please consider giving a five-star rating and sharing what the show means to you on iTunes and Spotify for those of you watching on YouTube, remember to leave a comment below, like the episode and subscribe to the show to get notifications of future episodes. If you enjoyed this episode, please consider supporting the podcast by subscribing to our Patreon Page at patreon.com/recoveryafterstroke, your support allows us to continue sharing these vital stories and keep the podcast available to all stroke survivors. If you are a stroke survivor with a story to share. Now is the perfect time to join me on the show.
Bill Gasiamis 1:09:23
The interviews are unscripted, and you do not need to prepare for them. Just be yourself and share your experience to help others in similar situations. If you have a commercial product that supports stroke survivors in their recovery, you can join me on a sponsored episode of the show. Simply visit recoveryafterstroke.com/contact, fill out the contact form with your category, and I’ll get back to you with details on how we can connect via Zoom. Thanks again for being here and listening. I deeply appreciate you. Your support means everything to me. See you on the next episode.
Intro 1:09:59
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed all content on this website and any linked blog podcast or video material controlled this website, or content, is created and produced for information or purposes only, and is largely based on the personal experience of Bill Gasiamis. The content is intended to complement your medical treatment and support healing.
Intro 1:10:33
It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content, if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional.
Intro 1:11:07
If you are experiencing a health emergency or think you might be call triple Zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department. Medical information changes constantly, while we aim to provide current quality information in our content, we do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk.
Intro 1:11:36
We are careful with links we provide, however, third party links from our website are followed at your own risk, and we are not responsible for any information you find there.
The post How Rachel Paverman Overcame a Cavernoma and Hemorrhagic Stroke: A Story of Resilience and Hope appeared first on Recovery After Stroke.
A Stroke Survivor’s Journey: From High Blood Pressure to Personal TransformationIntroduction
The journey of a stroke survivor is often marked by a profound transformation—one that encompasses not only physical recovery but also emotional and spiritual growth. For many, this journey begins unexpectedly, as was the case for Sunny Kakaiya, whose life took a dramatic turn after suffering an ischemic stroke caused by high blood pressure. In this blog post, we explore the various facets of a stroke survivor’s experience, from the initial shock to the ongoing process of recovery and personal transformation.
The Stroke Survivor Experience
Sunny’s stroke recovery journey began on January 4th, 2021, when a blood clot disrupted the flow of blood to his brain. This event not only threatened his physical health but also challenged his identity and sense of self. For stroke survivors, the sudden onset of symptoms—whether it’s loss of movement, speech difficulties, or cognitive impairments—can be disorienting and frightening. The experience often forces individuals to confront their own mortality and the fragility of life.
High Blood Pressure and Stroke
Sunny’s stroke was directly linked to his high blood pressure, a common yet often overlooked risk factor for stroke. Like many others, Sunny was hesitant to take prescribed medications due to concerns about their long-term effects on his body. Unfortunately, this decision contributed to the severity of his stroke. High blood pressure is one of the most significant risk factors for stroke, and managing it is crucial for both prevention and recovery.
The Emotional Challenges of Stroke Recovery
Beyond the physical impact, stroke survivors face significant emotional challenges. Sunny’s journey was no different. He grappled with feelings of frustration, fear, and grief—especially after the loss of his mother, who had been a pillar of support during his recovery. Coping with stroke-related identity changes can be particularly difficult, as survivors often feel like a shadow of their former selves. The emotional toll of navigating these changes can be just as challenging as the physical recovery process.
Meditation for Stroke Recovery
In the midst of these challenges, Sunny turned to meditation as a tool for healing and personal growth. Meditation has been shown to have numerous benefits for stroke survivors, including reducing stress, improving mental clarity, and aiding in the recovery of cognitive and physical functions. Sunny practiced meditation daily, using techniques such as pranayam and the Wim Hof method, which helped him regain control over his body and mind. For stroke survivors, meditation can be a powerful way to reconnect with oneself and foster a sense of inner peace.
Personal Transformation After Stroke
Sunny’s stroke marked the beginning of a profound personal transformation. Before his stroke, he often postponed pursuing his dreams and goals, but the experience of nearly losing his life inspired him to live with greater urgency and purpose. Sunny’s determination to walk again—despite being told it would take two years—exemplifies the resilience and strength that many stroke survivors discover within themselves. His journey is a testament to the idea that a stroke, while devastating, can also be a catalyst for personal growth and self-discovery.
Coping with Grief and Identity Change
One of the most difficult aspects of Sunny’s recovery was coping with the grief of losing his mother, who passed away during his recovery. This loss compounded the emotional challenges he was already facing, as he navigated the identity changes brought on by his stroke. Through counseling and spiritual practices, Sunny learned to honor his mother’s memory while continuing to move forward in his recovery. For stroke survivors, coping with grief and identity change requires patience, support, and a willingness to embrace a new sense of self.
Conclusion
Sunny Kakaiya’s story is one of courage, resilience, and transformation. His stroke recovery journey highlights the complexities of being a stroke survivor—balancing physical recovery with emotional healing, managing the impact of high blood pressure, and ultimately embracing a new identity. For those on a similar path, Sunny’s experience offers hope and inspiration, showing that even in the face of adversity, it is possible to find strength, purpose, and personal growth.
If you or a loved one is navigating the challenges of stroke recovery, remember that you’re not alone. Whether through meditation, counseling, or connecting with other survivors, there are many ways to support your journey toward healing and transformation.
Inspiring Stroke Survivor Story With Sunny KakaiyaSunny Kakaiya shares his inspiring stroke recovery journey, from high blood pressure to transformation, resilience, and regained independence.
Highlights:
00:00 Recovery After Stroke Patreon Page
02:05 Stroke At New Year
05:08 Trying To Avoid Taking Medicines
12:52 Stroke Caused By High Blood Pressure
16:04 Waking Up After A Coma
19:42 The Physical Deficits
22:46 Losing Weight And Regaining Speech
31:00 Taking Courses For Stroke Recovery
42:12 The Impact Of Words In Stroke Recovery
48:16 Dealing With Pseudobulbar Affect
1:00:08 Plans For The Future
1:10:47 Lessons From The Stroke
Transcript:
Recovery After Stroke Patreon PageBill Gasiamis 0:00
Hey, there, everyone. I’ve got a little bit of news to share with you. For those who have found relief or encouragement or simply benefited from the recovery after stroke podcast, I’ve recently set up a Patreon page to help keep the podcast running since 2017 I’ve been covering all the costs myself, but now I’m reaching out to our amazing community for a little bit of support.
Bill Gasiamis 0:23
If this podcast has helped you on your recovery journey, joining our Patreon is a way to give back and ensure it stays available for others who need it. Your support will help cover the costs of recording, editing, and hosting, so that we can keep bringing you the content that’s made a difference in your life.
Bill Gasiamis 0:23
It also supports the transcription of episodes into subtitles on YouTube, making the podcast accessible to listeners with hearing challenges. For those of you who appreciate that, this podcast exists for stroke survivors everywhere, Your support helps with web hosting, and maintenance, keeping everything running smoothly and ensuring the podcast remains a resource for everyone.
Bill Gasiamis 0:42
Membership starts at just $5 a month, and every little bit helps. If you’d like to support the podcast, head over to patreon.com/recoveryafterstroke. Your help makes a big difference, and I’m so grateful for your support. Thank you.
Introduction – Stroke Survivor Story With Sunny Kakaiya
Bill Gasiamis 1:23
This is episode 317 and today I’m thrilled to bring you the inspiring story of Sunny Kakaiya, a stroke survivor who has turned his life around in remarkable ways after suffering a stroke due to high blood pressure, Sunny faced immense physical and emotional challenges, but through determination, meditation and sheer willpower, he not only regained his independence, but also transformed his life. Join us as we dive into Sonny’s incredible journey of recovery and personal growth. This is one episode you will want to listen to.
Bill Gasiamis 2:01
Sunny Kakaiya. Welcome to the podcast.
Sunny Kakaiya 2:05
Thank you, Bill. It is an honor to join you and talk to you. I see every video you posted on YouTube, and it’s really motivating for me, also, from that standpoint, to see the journey of people who have gone through and how they overcome, and that has actually given me a hope that I will be soon completely fine like so I’m very positive about that. It’s been three years when the stroke has happened, exactly Jan 4, 2021, first working day of the year.
Sunny Kakaiya 2:56
So we celebrated and everything was there with friends. And on January 4, I started my business, and the stroke happened. So I still remember that day, very, very evident. It is still in the front of my eyes. I actually visualized what actually happened. I do some meditation techniques. So I go back in that period and see what happened to me, how I reacted, how my mom reacted, my neighbors. So everything I see, I try to heal myself from that standpoint.
Bill Gasiamis 3:47
So what exactly happened to you? Tell me, like, did you notice something wasn’t going well? There was some issues with your health. What did you notice?
Sunny Kakaiya 4:00
There was a history that six months back from the time the stroke happened, I was at a business trip to Hyderabad, and when I entered the office, I started sweating and I was feeling uncomfortable. I immediately raised it to the medical assistant, and they took me to the hospital, and then I was admitted in ICU.
Sunny Kakaiya 4:02
They monitored my heart and stuff, later on the doctor told me that you have a high blood pressure because of that, you are experiencing this uneasiness and drowsiness, and so he told me to take medicines, and later on, I was back to my home location at Mumbai.
Trying To Avoid Taking MedicinesSunny Kakaiya 5:08
I will tell you that I was little bit hesitant, hesitant to take a medicine, because putting a chemical in my body, that was something my past memory, my father had cancer, and the cancer was developed because of consuming medicine. He was have. He was having acidity issue, and for that reason, he was consuming one medicine continuously in the morning and the in the evening.
Sunny Kakaiya 5:43
So from that standpoint, I had in my mind that I should not put medicine in the body which will harm my body in long run, because I’ve seen my father’s journey, because cancer is painful, six chemotherapies, and then the operation, the esophagus was stretched and removed.
Sunny Kakaiya 6:08
So everything I have seen it. So from that, I was scared to put medicine in my body. Then I decided not to take blood pressure medicine. And that was a fault. And I would say, whoever has a blood pressure, we have to take medicines, or we have to take alternative things where we can do, maybe prana, maybe meditations or exercise or yoga or something with that.
Sunny Kakaiya 6:44
So it doesn’t impact our lifestyle from that standpoint. And it was a period of covid when this happened, so it was second lockdown in India, and we, we were not allowed to go out. But that period, for that specific one, two weeks, there was some ease. So I went to bank and I came, came from bank around 12 o’clock.
Sunny Kakaiya 7:21
I My mom was cooking food for a for the afternoon, and I went on a business call because my call was scheduled. The moment happened that. 10 minutes after that, I just lurched on the right hand side, and I completely lost in that pattern. Then I kept the call, I called mom, mom didn’t understood what has happened to me.
Sunny Kakaiya 7:54
Then neighbor was called off. They took me here, then for 15 minutes, I regained my movements again, because of someone had given a massage of red chili powder on my legs, because they said, on your feet if you scrap the red chili powder with the water, this will regain.
Sunny Kakaiya 8:32
And actually it regained, and I was able to walk and go down I stay on the 4th floor. So I went till second floor, and again I lost my connection to the brain, and I was not able to so I my friend, school friend who was with me. He supported me, and then all the neighbors came to help, and it took me to the hospital.
Sunny Kakaiya 9:07
But that journey to the hospital was from 12 o’clock. It almost took one and a half hour I reached off hospital. One and a half after once I reached hospital, they started giving me an injection. They knew that I got stroke after examining me, and they started giving the injection which will break the clot.
Sunny Kakaiya 9:40
So from that time, they waited till eight o’clock. Twice, they gave me the injection. I was having some movements of my hand and legs, but it was, it was. Not that frequent, like a normal person, but they said to you, they sent me to relax, and then still started giving the injections. Once that was done, eight o’clock, they told my wife and my mom that we have to operate.
Sunny Kakaiya 10:22
And then they took me to the operation theater at around 12 o’clock in the night, and they started me so I just remember I was on an operation theater, and they gave me the anesthesia they counted from 10, 9, 8, and I went off, and then the operations happened. The strange thing is that when I woke up, I asked my wife what day it is.
Sunny Kakaiya 10:57
Because I went on Monday, I thought today is a Tuesday, but my wife told me it is a Friday. So on four days I was on ventilator. Doctor told my family and my friends that there is a 50-50, chance that he would survive until he comes conscious. So from that period when I came conscious, I asked my wife, mom, and family members at what day it is and where I am, right?
Bill Gasiamis 11:41
I was going to ask youdo they know why you had high blood pressure?
Intro 11:47
If you’ve had a stroke and you’re in recovery, you’ll know what a scary and confusing time it can be. You’re likely to have a lot of questions going through your mind, like, how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse? Doctors will explain things, but obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 12:12
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying and head to recovery after stroke.com. Where you can download a guide that will help you. It’s called seven questions to ask your doctor about your stroke.
Intro 12:31
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website now recoveryafterstroke.com, and download the guide. It’s free.
Stroke Caused By High Blood PressureSunny Kakaiya 12:47
Yes, I had a high blood pressure because we were in covid times, we were not having much of activity to the to be done. We were sitting at home, and for that reason, I developed high blood pressure.
Bill Gasiamis 13:14
Okay, so you’ve got high blood pressure, the high blood pressure caused the clot, the clot went into your head, yeah, and then to remove the clot, they tried to give you the clot busting medication, TPA, that didn’t do the job 100% and then they went and operated. Did they go in from your groin, in your up into your arteries? How did they operate?
Sunny Kakaiya 13:41
They inserted the catheter in thighs, from thighs they it gave me till here. I still feel something when there is winter or rainy season, I can feel the pain over here, because still, right now, it is rainy season in India. So whenever it happens, it happens that I feel that there’s something which is pricking me, or something that sensation is there.
Bill Gasiamis 14:19
What kind of work were you doing? What type of employment did you have?
Sunny Kakaiya 14:26
I was a consultant. I work for Accenture at that time. So I was a learning management consultant. Specifically, I lead finance and accounting learning management. So that was catering for Mumbai and across India.
Bill Gasiamis 14:48
And you say you’re in Mumbai, you live in Mumbai, but were you one hour and a half from a hospital? So were you in a distant area away from the hospital?
Sunny Kakaiya 15:00
No the problem was at the covid time the there was no ambulance available to get me to the hospital, so my friends, had to call multiple times to different ambulances, and that ambulance took time to come to my place, and I waited downstairs for a while, so that was also an issue.
Bill Gasiamis 15:39
So you guys had to make your own plans and your own trip to get to the hospital, because the ambulance may have taken too long to get there. It’s such an interesting thing because it’s common everywhere. It doesn’t matter who I’ve spoken to about their stroke, if it happened during covid, it was chaos. Doesn’t matter what the scenario was.
Waking Up After A ComaBill Gasiamis 16:04
Stroke patients weren’t able to get to hospital quickly enough, they weren’t able to be seen quickly enough, they weren’t able to access medical care, ambulances. It was such a difficult time for everybody, the whole world, but a lot of stroke survivors that I’ve interviewed have reported something very similar. So when you woke up after the four days, it’s Friday, when you woke up, what did you discover about yourself?
Sunny Kakaiya 16:36
When I woke up, I felt that my right side was missing. I was not able to feel my right side. I was not able to move my hand and my legs. My speech was completely gone. I was like (stuttering) I was being like that so that that was a period. But then I was in a hospital. I was for 15 days, I and then I was discharged, and I came home.
Bill Gasiamis 17:13
And when, when you were discharged, yeah, what was your left like? What was your body like? How were you able to experience your body? Was there deficits that you had to deal with?
Sunny Kakaiya 17:28
To be very frank, I was not thinking from that standpoint. I was in a fight mode with my brain that how can I improvise myself from this situation? So when I woke up, Doctor told me a doctor asked me about my memory. So he just parted a joke that you have taken a gold for your wife, but you are not taken a gold for your mom and just joke for but I said, No, that’s wrong.
Sunny Kakaiya 18:12
Actually, I bought a gold jewelry for my mom, and I specifically that I mentioned that gold jewelry, and after that, they asked me about your Do you remember your email ID? Do you remember your passwords? Do you remember your credit card passwords and everything? So I recollected everything, and I said, Yes, I remember everything. I have not forgotten all those stuff.
Bill Gasiamis 18:45
You didn’t give them your password details did you? They weren’t trying to scam you were they?
Sunny Kakaiya 18:50
No, they were just checking my memories, because these are the immediate thing which you do in day to day life, right? He asked me, did I remember my Facebook password? Then I remembered everything. I remembered all the conversation I had so it was just four days. Four days is still missing in my life. I meditate every day. I try to go in that four day period, but it is blank.
Bill Gasiamis 19:33
Did you so you had your memory that was still there, what about your physical body?
Stroke Survivor Story And The Physical DeficitsSunny Kakaiya 19:40
My physical body. It was still. I was not able to make movement. I tried to get up by my own. My doctor and told me that, don’t try. Experimentation right now, because your back has been very much stiff from last 14, 15, days you are in a hospital and your back has completely frozen that will regain a little bit. So just allow some time to regain yourself, and you will be okay. But he told me that two years, you will not be getting up from the bed. So that was a trigger point.
Bill Gasiamis 20:34
Because you didn’t want to believe him.
Sunny Kakaiya 20:37
Yes, he told me, when I woke up and in the evening, he said to me in briefing that it will take two years to you get up from the bed. So that hit me to the core. I told him, Doctor, you are telling two years I will give you example that I will within one and a half, I will get up and I will try to walk I said to him. He said, that’s impossible, because what we have operated, and I know the medical conditions from medical terms, I don’t see that you will get up very soon. So that hit me, that really hit me to the core. He actually challenged me. You will not do it.
Bill Gasiamis 21:38
Did you prove him wrong?
Sunny Kakaiya 21:40
Yes. Within one month I actually started walking with the help of stick.
Bill Gasiamis 21:50
That is fantastic. So why do you think he was telling you that you’re not going to walk for two years? What do you think is going on in their mind? Are they trying to protect you? What are they trying to do?
Sunny Kakaiya 22:06
Yes, from the precautions perspective, they were very much that I should not get a stroke again in the midst of this, and I was really bulky at that time. That’s the reason he said this that.
Bill Gasiamis 22:29
You’re much heavier, how heavy were you?
Sunny Kakaiya 22:36
Around 120kg.
Bill Gasiamis 22:40
120 kg. And how tall are you?
Sunny Kakaiya 22:44
I’m 5.5
Losing Weight And Regaining SpeechBill Gasiamis 22:46
Okay, so for somebody who’s five inches, yeah, 120 kilogram is very heavy, okay, and I just want to see what it is in pounds, because a lot of our listeners would be listening in pounds. It’s 264 pounds, and then how much weight have you lost? Have you lost some weight?
Sunny Kakaiya 23:14
Yes, over a period of time of six months, I have lost weight down to75kg.
Bill Gasiamis 23:27
So you’re down to 75kg from 120 kg, 75kg is 165 pounds. What a difference. Okay, so, and have you found that that has helped improve your recovery after the stroke? Has that made things easier for you?
Sunny Kakaiya 23:54
Yes, it has done good to me. I altered all my diets. I started consuming raw foods. I started consuming proteins, maximum proteins. So from that time, I very much I was on a diet perspective. It was planned, and from that way I have reduced over a period of time. And there were some exercise which is given to me. I do squats every day. Then I do, I do cycling, which was a part of regime physiotherapy, you should tell me.
Sunny Kakaiya 24:41
So there were lunges also I was to do, then bridges I need to create. So all the type of exercise I was performing at that time. So in that six months period, I was able to lose it and to be very frank, I regain my speech first. That was 100% within one month, I regained my speech. I went to another doctor, which is Ayurvedic medicines. He mentioned me, if you want to regain your speech, you have to utter a word in some particular format.
Sunny Kakaiya 25:30
So I will let you know what was that I was doing it. Aah, Ee, Ooh, so, this muscles will get stretched and it will get activated and that I have to do it continuously. So I was seated in a room, and I was continuously uttering that word, continuously. I was doing this, and that’s the reason I regain this 100% so I didn’t, get a stammer. I don’t have any issues right now. I can speak easily.
Bill Gasiamis 26:23
So you regained your speech, and then with your you got up within a month, you proved the doctor wrong. Yeah, but were you able to walk successfully on your own after the first month, or did you still need some support? Whether it’s some other things that you use to support you.
Bill Gasiamis 26:41
Just a quick break, and we’ll be right back with Sunny’s incredible journey. But first I wanted to take a moment to talk about something that’s been a big part of my own recovery journey. That’s my book, The unexpected Way That A Stroke Became The Best Thing That Happened.
Bill Gasiamis 26:57
In it, I share my personal story and that of nine other stroke survivors who have turned their challenges into opportunities for growth. If you are looking for inspiration and guidance on your path to recovery, this book is for you. Get a copy on Amazon or visit recoveryafterstroke.com/book now, let’s get back to Sunny’s story and continue to be inspired.
Sunny Kakaiya 27:21
I needed, needed a stick to walk, and there was a wife and my brother beside me, because I need to make a balance between right inside and left hand side. I need to, again, teach my brain that you have to walk a walk this way. So I was a body of 37 year old. But I was again a kid of two, three years I was back to that zone. So doctor explained me very diligently.
Sunny Kakaiya 27:58
He said that right now you your one side is 37 year old, but your ones the one side is almost a kid. So you are to train that it from the kid perspective again. You have to grab things again. You need to try everything. What you have done in your kid, Kid time in your child time. So that’s the reason he, he taught. Told, taught me everything from that standpoint.
Bill Gasiamis 28:30
And what happened with work? Did you notify work? Did you spend some time away from work? How did that go?
Sunny Kakaiya 28:39
Yes, that’s something very interesting. I took a break of six months, but my director and my team helped me out financially. They gave me advanced salary of six months and to do my treatment, I’m really thankful to them at that time when they provided the advanced salary.
Sunny Kakaiya 29:14
There are many good thing has happened with me. At that time, I had taken a home loan, and I’ve taken the insurance also from that my home loan was completely waived off, around 40 lakhs. It was completely waived off. So all financial liabilities were reduced to the core, and slowly and steadily, my mental piece was there, okay, and I don’t have to worry much about my financials, because the aid was given to me.
Sunny Kakaiya 29:55
And within six months, , I started walking. But before that, I started my left hand to train to type, to write. So I started writing, 1 to 100 I started a to z, then I started with the words. Then I started eating from the left hand, everything from the left hand. I started typing. It was 17 words for a minute. I made it very true.
Sunny Kakaiya 30:26
So once now, if I type now, you will not feel it that I am work typing from one hand only. It is, it is normal. So I made equip myself that I have to work. From that standpoint, I have to do something. And I invested in that way. Other thing doctor told me that you want to challenge your brain. Right now, your brain is dormant. You have to challenge so what I did, I started pursuing LinkedIn courses.
Stroke Survivor Story: Taking Courses For Stroke RecoverySunny Kakaiya 31:00
I was doing LinkedIn courses, and I was getting some knowledge every day, because I was seated for six months, seated idle. So he said, Don’t get into idle mode. Start in utilizing because you are a busy person. You are giving time to your work, your family and everything, and right now your idle, the bad thought should not enter your head, that nothing will happen. Yeah, so I did 66 courses from LinkedIn in that period, and I regained my enthusiasm.
Bill Gasiamis 31:43
Was it difficult at the beginning to do those courses and to concentrate? How difficult was it? Tell me about that.
Sunny Kakaiya 31:52
So I started with one to three minutes of watching videos, and the video when I see it, I was not able to understand what is saying. Again I have to pause it, going back and again I do start the video and understand so slowly and steadily, I was starting understanding the of the video so that that was there, and then a half an hour, then one hour. So every one hour, I used to regain it again. I used to see the video to gain the knowledge.
Bill Gasiamis 32:33
So you had to repeat it multiple times.
Sunny Kakaiya 32:37
Yes, yes. And that has strained my brain very much.
Bill Gasiamis 32:41
And that strained your brain, was that fatiguing? Does that mean that you have to rest afterwards?
Sunny Kakaiya 32:48
Yes, but it has given me an advantage. After six months, I enrolled for the post-graduation course, and that was a challenge for me. I told them that I will be enrolling. So I told the university that I am a person with disability and I want to pursue this course, they examined me and told me, okay, you can do it.
Sunny Kakaiya 33:17
And then I joined Accelera and I completed HR transformation and people analytics. So I took the different subject altogether. I’m a finance guy, but I took a different subject so that I should, I understand it properly or not from that perspective. And I learned a new stream altogether.
Bill Gasiamis 33:43
What subject did you take?
Sunny Kakaiya 33:45
HR transformation, human resource transformation.
Bill Gasiamis 33:51
And did you take that because you had an interest in that, or did you take it simply just because you thought you wanted to try something else?
Sunny Kakaiya 34:00
No, I was part of learning management system as a consultant, so I thought I should pursue this course so it will give me an edge and more learnings and implement things in the business. So I did that.
Bill Gasiamis 34:20
It’s still relevant in your particular field, in the work that you do. It was very relevant and are you still doing that particular course, or have you completed that?
Sunny Kakaiya 34:37
I completed that within 10 months. It was 10 months course, and again, have enrolled for new course from I am Mumbai, advanced project management and analytics. So the next month it is going to get communicated and. And course will be completed. So the second challenge, I took it after I took a break of one one year, and then this happened in 2022 2023 I took a break, and again, I took a course in 2024 and started doing that.
Bill Gasiamis 35:22
So are you back at work? Have you been able to go back to work? Or has that not happened yet?
Sunny Kakaiya 35:31
I went to work within six months.
Bill Gasiamis 35:35
Okay, so you went back to work full time, the normal hours you’re doing before?
Sunny Kakaiya 35:43
Full time, yeah, full time.
Bill Gasiamis 35:46
And was it difficult getting back to work? How did you navigate that? Because Are you walking properly after six months, you still have some mobility issues. So how did you navigate?
Sunny Kakaiya 35:57
No, that was different. I was giving work from home setup so I don’t have to go to office very frequently in a month once, I used to visit the office. So that that leverage was given to me being a disabled person, and the projects also were aligned to me in that person that I don’t have to go to office every day. So that was very good. My mentors and my directors helped me in that way.
Bill Gasiamis 36:38
And then the days that you did have to go to the office. How did you navigate that? Was it easy to get to the office?
Sunny Kakaiya 36:46
Yeah, I get CAB services from the office. They used to take me, but I have to go down with the help of my wife or mom, and when I came back home, they used to fetch me up to the building. So that was there when, slowly and steadily, when I regain the confidence I asked that I will go by myself only because someday I have to take that step independently. I have to walk independently.
Sunny Kakaiya 37:21
I have to go outside meet friends, to take in the groceries, or something like that. I have to do myself. So I started those so first time, when I went, I went for a haircut independent. So for that reason, I got a confidence, okay, I can walk now by myself, but I was lurching on the right side, but it’s there.
Bill Gasiamis 37:52
It looks different, but it’s walking, I understand. So that must have been a big moment for you, that first moment of new independence again.
Sunny Kakaiya 38:05
Yes, yes, I literally cried. It is a moment of freedom. It is the guy who doesn’t sit at home for a moment also he’s been seated for from last year, last three years. It is very much painful, because I used to play cricket every weekend, Saturday and Sunday. I was very active. I used to go outside with the friends. I used to go out with my wife, Mom, I used to party also, so not a single day I was at home, and the life suddenly changed. Completely changed,
Bill Gasiamis 38:53
yeah, big adjustment, big adjustment from your physical adjustment, your mental adjustment, your your speech had to adjust. Then you also had to your work situation, and then also your after hours situation, how you spent your time on the weekends. Everything’s changing. It’s very dramatic, and it’s very sudden, and you’re not prepared for it. What were some of the things that you struggled with the most. What were the things that were the hardest for you to deal with?
Bill Gasiamis 39:30
I’ll ask that question again. You seem very motivated, very upbeat. You seem like the glass is always half full, not half empty. However, stroke is a very difficult time, so there must have been some things that made you upset, emotional, perhaps, or, you know, worry.
Sunny Kakaiya 39:56
The only thing I was worried about, people used to see me from a different angle altogether, in in a moment, six months back, I was something else. I was very much different person, and now they empathy me, sympathize with me. Okay, this has happened. You will do it good. You will so they thought I will be, I will not be doing or I will not be pursuing my dreams, which I had it, because now life has stopped.
Sunny Kakaiya 40:41
You in some sense, you don’t have to worry much, you relax and you you don’t think about anything. And they used to just give me a weird empathy that now it is stopped. You can’t do anything else. That is, there’s a that was a direct message given by many people to me, that this is this is it.
Sunny Kakaiya 41:07
Now you will be a disable, and you will be dependent on your wife and mom for everything, right from getting a bath or eating a food so that that actually hit me very much, that why people are thinking that I’m I have a same brain with the enhanced version of the brain. I have developed everything again. I started with the left hand. I regained all the moments which I need to do it. I used to eat it. I used to take a bath. Myself, not, not a single time. I means, after six months, I did everything by myself.
Bill Gasiamis 41:54
Yeah. So instead of encouraging you, they were saying you just have to give up. Now. You don’t have to worry about doing anything. You have to expect somebody else to look after you and help you out. And then that’s not encouraging at all. That’s really difficult.
The Impact Of Words On Stroke RecoverySunny Kakaiya 42:13
That means people don’t have a idea about this thing I think that everyone has some kind of disability. Even when I see everyone, there is some disability which are visible. There are some disability of there are not visible. So from that perspective, I can’t judge you from that day. You cannot do this. That is something. If you give me a challenge, I will definitely prove you wrong.
Bill Gasiamis 42:49
Yeah, and do you think they’re not doing it because they’re terrible people? They’re doing it because they don’t know any better, and they actually don’t know how to be encouraging. And maybe they’re again, maybe, like you said, they’re trying to protect you or something, it’s interesting, like, how people think about that.
Bill Gasiamis 43:12
I know maybe I was not exactly like that. I was kind of the opposite. When I was before stroke I would tell people who thought that they something was difficult, that they could do it. I used to encourage people ways to make sure that they knew that all you have to do is keep going and keep trying and all that type of thing.
Bill Gasiamis 43:35
But then I found that a lot of people don’t know how to deal with stroke survivors, they don’t know how to have a conversation about all of the changes that have occurred, all of the problems that that person has now, all of the physical challenges that they have. So they say the worst thing that they can possibly say, trying to make things better, but they say the worst thing, and they don’t realize the impact that it’s having on the other person.
Bill Gasiamis 44:04
And it’s a little bit it’s a little bit sad that that happens, but it’s really important for the stroke survivor to understand that it’s actually not about them, the person who is saying those words. It’s more about that person. It’s about that person’s thoughts and approach to life, and that approach to life doesn’t have to apply to the stroke survivor.
Bill Gasiamis 44:29
You can listen to that person just say whatever they want to say and let it go past to the wicket keeper and forget about it, and then just do your own thing, follow your own routine. Do your own encourage yourself. If you haven’t got the right type of encouragement, fight for your recovery. Don’t accept what other people who have not been in your shoes are going to say.
Sunny Kakaiya 44:54
Yeah. Absolutely, absolutely. I actually never thought of that. I was a different person altogether. So before that, before stroke, my personality was that I will be doing things later that was my notion.
Sunny Kakaiya 44:55
What kind of things would you be doing later?
Sunny Kakaiya 44:59
I will tell you that I was trying to pursue a course for a while. So I was thinking that I will do it, do it, do it. I will. But I never took an an admission, and I never went for it. But as soon as I got a stroke, and when I identified my strength, I felt my strength, the yes, this is sunny and sunny can do many things. From that standpoint, I started figuring out that this, you can get it and conquer it.
Sunny Kakaiya 46:00
There is nothing impossible in in this world which you cannot do it. So from that perspective, I was a changed person. So somewhere down the line, I feel the stroke happened to me, but I see it in a very positive way, then I’m a changed person. I’m literally a change person.
Bill Gasiamis 46:26
Do you feel like before you thought that life was long, and then after the stroke, perhaps, do you think, okay, life’s short, I better do something now. I better not wait until later, because later might not happen is that something that you relate to?
Sunny Kakaiya 46:47
No, I don’t see that way also that life is short. I have a desire to live. I have a desire to fulfill my dreams. This is just one incident in my life which taught me many things, let me know who are my nears and dears one. And it has filtered out people also and things also in my life. So I see it in that way, very much, and I’m very positive with that.
Bill Gasiamis 47:24
So it’s so it’s this really serious situation. You really unwell. You know you might not recover properly. You have all these concerns. Yet, when you have had a chance to reflect back three years now, three and a half years, you see that there’s been a lot of personal growth and a lot of personal development, and your yourself, but you’re an enhanced version of yourself, even though you have the deficits that you have.
Sunny Kakaiya 47:55
Yes, yes, definitely, when I say, if I have, I’ve grown, I’ve grown in this three to four years.
Bill Gasiamis 48:09
Like it sounds like it’s been an intense growing as well. So you’ve had a lot of growing that you’ve squeezed into those last three years.
Stroke Survivor Story: Dealing With Pseudobulbar AffectSunny Kakaiya 48:16
Correct. It’s very much intense because I started meditations, I started inquiring about that, why stroke happens? What was the reason? What stroke has happened to me? I had a side effect of pseudobulbar affect. It is a effect in the brain.
Speaker 1 48:36
Pseudo bulbar affect.
Sunny Kakaiya 48:47
So you don’t have a emotions control. So that is a part. So I’m talking to you right now, and if I if some thought pops up in my mind, which is emotional, I will start crying. And if I some jokes happen to me in my head. So whenever I go to my meeting or a client meeting or director meeting, I tell them that I’m a stroke patient, I might have a pseudobulbar affect. So if some thought pops up, I might cry, or I might laugh. So please don’t mind it.
Bill Gasiamis 49:25
In the wrong moment, we’re in the middle of a meeting and I’m laughing or crying. It’s not about you, it’s my stroke condition, doing it.
Sunny Kakaiya 49:32
Yes, I have mentioned that very specifically.
Bill Gasiamis 49:36
Yeah, it’s a very common thing, pseudobulbar affect. I had a similar situation, and every once in a while, it just catches up with me and I cry. So a little while ago, I was presenting about my book. So I’m not sure if you’ve heard about the book, but yeah, I did. I did. I wrote a book. It took four years, and it’s about all those things that you’ve spoken about, sonny, it’s about how it’s possible to go through the process of having tremendous personal growth during the recovery phase from stroke.
Bill Gasiamis 50:08
And the book is called The Unexpected Way That A Stroke Became The Best Thing That Happened. Now it became that it wasn’t the best thing that happened at the beginning, but it became that later on, because in the last for me, in the last 12 years, I have squeezed in so many things that the previous Bill doesn’t do. You know, the previous Bill doesn’t have a podcast, doesn’t write a book, it doesn’t talk public speaking, he doesn’t do meditation, he doesn’t learn about nutrition, you know, he’s smoking, he’s drinking, he’s doing all these things that are harmful to the body.
Bill Gasiamis 50:48
I’m talking with my family different, you know, I’m nicer to my kids, I’m more emotional. And I remembered all these things, and I remembered that I’ve had, I had pseudo Bulba affect. At the beginning, I was crying all the time for nothing, but, but it hasn’t happened for a long time. That emotional side, it settles down after 10 years, you know, eight years, nine years, it settles down a little bit, and it doesn’t happen so often.
Bill Gasiamis 51:17
So I went to the book launch to present about my book. There was about 40 people in the room, and the first moment I stood up and went to give the presentation, I cried. And then I had to stop. I had to calm down. Then I had to continue with the conversation. And then sure enough, a few minutes later, I cried again. I cried about four times during that presentation.
Bill Gasiamis 51:42
So it’s very interesting to observe myself, even after 12 years, going through that and being triggered by something completely unexpected. And I don’t know why. So in the room, I think what made it a little bit harder to get through in the room was a lot of my family and friends, the ones that really helped me, that were close to me, some of them I’ve written a little bit about in the book.
Bill Gasiamis 52:10
So it’s a very interesting thing to still experience pseudobulbar affect. But a lot of people who know me now, they know that that happens, and it’s not a big deal anymore, whereas before, when you’re 37 because I was 37 when I had the first bleed in my head, and you’ve never cried in public before, and nobody see you cry. They don’t know how to react. They don’t know what to say. But now they’re used to it, and they know that in a few minutes, I’ll be fine, and I’ll just keep going.
Sunny Kakaiya 52:42
Yeah, the same thing I when my dad passed away. I was strong as a stone. I didn’t cry, I didn’t cry, and I was after that. After this stroke, I realized that where the difference in me, that the sunny before and sunny now is very different altogether, but this, this is a much better version from that I see. I can see that, because when you cry, you let out your emotions, and it is good to be good to get out the from that emotions.
Sunny Kakaiya 53:34
I believe in that way, because when you don’t let out that emotions, it stays somewhere in your heart or brain, and it really impacts our health. It’s okay to cry. We there is a notion that men don’t cry. It’s not true.
Bill Gasiamis 53:56
Real men cry Sunny.
Sunny Kakaiya 53:59
Yeah, definitely, definitely.
Bill Gasiamis 54:02
So how about your family who lives with you now? What sort of living arrangements do you have?
Sunny Kakaiya 54:11
I stay with my mom and my wife, but this year, on February 29 my mom passed away. Yeah, that’s an emotional setback to me, because she has, again, raised me like a kid in this three years very much. So it’s a very emotional setback right now. I’m going through some counseling also, because I’m, I want to overcome from that, because I have some dreams to complete, which my mom has seen it.
Sunny Kakaiya 54:52
I have to do that, and I’m much capable from that point of view. So I’m I’m getting better day by day, but missing mom like anything, because she used to be here only 24 by seven, so see her. So that’s really missing for me and my wife. I have no kids yet, but we’ll think to plan in future.
Bill Gasiamis 55:23
What about the counseling side of it? How has that been helpful? Why is it important to do counseling for yourself? Why do you feel it’s really important?
Sunny Kakaiya 55:34
It is a fine tuning your brain and accepting a fact that the person is physically not with you, but from mentally, you should be very positive that from the astral plane, they will be with You only, and they will be giving you the blessings required, and you never think that you are alone from that perspective. So just one example that counsel told me.
Sunny Kakaiya 56:16
Do something which your mom used to do every day like a routine. Start performing those at what your mom used to do in the morning, evening or afternoon. You will not feel that she’s gone away. She is with you only. So that has helped me of very much I should, I should perform few activities which mom used to do. It, like watering the plants. And then she used to prepare a tea.
Sunny Kakaiya 56:58
I prepare a tea with that specific style than doing a rituals from the God that she used to do every day. So all those things I started performing, she used to go out and get something for me, my wife, so I have started doing that, also what she should bring for us. So I feel that she is with me, and that is a very positive one. It does. The physical form is not there, but she is with me mentally all the time.
Bill Gasiamis 57:41
Do you feel like the counseling has reminded you of some things that you already knew from, say, your your spiritual beliefs or your religious beliefs? Has it just reminded you about the fact that your mom is physically not there, but she’s living in your heart, you know, and she’s spiritually still with you, and she’s always going to be a part of you.
Sunny Kakaiya 58:07
Yes, yes. That has helped me a lot.
Bill Gasiamis 58:11
Yeah, your dad. How long ago did your dad pass?
Sunny Kakaiya 58:19
Seven years back.
Bill Gasiamis 58:22
So seven years ago, that was before the stroke, before you had an understanding of emotions and the type of level of what’s the word, like wisdom that you have now very different kind of experience. And did you find yourself being affected by your dad’s passing as much as you were affected by your mom’s passing? Or was it sort of had similarities, but very different? You experienced it differently?
Sunny Kakaiya 58:58
Yeah, I would say it was different when my dad passed away, I was I was more. I was like a person who will be leading the family, a man of the family. So from that point, I was being very strong from that way, and I have to lead the family. But when my mom passed away, I cried like two year old. I still cried like Kid, because it’s the it’s emotions.
Bill Gasiamis 59:41
It’s a very different Yeah, so what you’re saying is, with your dad, it’s kind of like the life, your life then took another turn, where not only did his passing happen, but also you, your responsibility increased, so you became the man of the house, so to speak. And. The head of the house, not the man the head of the house. And it’s a different kind of transition of relationships.
Plans For The FutureBill Gasiamis 9:00:08
So it’s like your dad passed on something to you that you needed to accept and then move forward with. But as with your mum, it was a very more, it probably always was, a more emotional relationship with your mum, because she’s your mom. She gave birth to you, and, yeah, she nursed you, and she did all those things.
Bill Gasiamis 9:00:31
So it was a and as well that you had a stroke, and she cared for you in a deep way like she did when you were a baby. So very different kind of experience. Correct? Yep. Mm, well, it seems like you’re doing a great job at keeping their traditions alive and keeping you know their memory alive within you and your family. You’re doing a great job. Do you have siblings?
Sunny Kakaiya 9:01:01
I’m the only child.
Bill Gasiamis 9:01:03
Ok only child. So it’s you and your wife. And what are your thoughts about the next six months? What are you planning to do to achieve what’s on the to do list?
Sunny Kakaiya 9:01:19
So next six months, I saw your video of etanercept, so that has triggered my interest, so I contacted INR Stroke Recovery Center in it was Philadelphia, right? No, Florida, yeah, Tampa, Florida, yeah. I my wife’s brother is in Florida. So I contacted the center, and I asked everything in that format, they told me that around $16,000 the cost will be there, and sudden test before that will be performed.
Sunny Kakaiya 9:02:16
So right now, I am collecting those money, from that standpoint, to go over there, and there is a waiting period of five to six months down the line if I take a appointment now, my turn will be after five months or six Months. So I’m, I’m very positive at that once I have that money, I will, I’ll start raising it, and I will go over there and get completely healed. And that’s a positive.
Bill Gasiamis 9:02:56
Okay, so you’ve spoken to the clinic, they’ve told you you need to do some blood tests. You need to get some results done. Do you do all those before you arrive to Tampa, Florida? You don’t do that when you get there, correct?
Sunny Kakaiya 9:03:13
Right?
Bill Gasiamis 9:03:15
So you do all that stuff in India, you send them the results, they will determine whether you are eligible, yeah. And then, if you are eligible, then you can make the appointment, raise the money, and then, and then go, got it. Got it, yeah, yeah. Well, that’s good. I’m glad because, as so many people have heard about etern because of the interview that I did, and it’s really encouraging, because it offers hope.
Bill Gasiamis 9:03:44
I know it offers hope for some people. It doesn’t work. So it may not work for everybody, but if you can manage the money side of it, and you don’t mind going through all of that to get a result, maybe I think it’s worth it. I think it’s worth going after every possible improvement that you can get. And it’s great that you you found out on the podcast. I’m very happy about that.
Sunny Kakaiya 9:04:14
I would like to tell you one thing, I believe in the higher self. So when I saw your video at that time, I understood that God is giving me a sign that Sunny you have to do this and you will be completely fine, because I wish God I actually meditate. I told them that the day I got a stroke and I got like this, you only have a power to do that you can do in one day where you can make me proper, like a normal person. And after one week, I saw your video and when I saw the video, I cried I saw I told my wife to sit with me, and I saw it again, and we both cried. That was the emotion all together.
Bill Gasiamis 9:05:18
Wow, so I’m so happy about that.
Sunny Kakaiya 9:05:22
Thank you so much for that, doing that thing, because God gave me the message that you need to do it, and yes, you will get better.
Bill Gasiamis 9:05:33
I’m so glad about that. You know, we are, I’m in Australia. You’re the way. You’re all the way over there in India, as a cricket supporter, I never want India to beat Australia ever again in the cricket but as a human being and a fellow stroke survivor, My wish is that People find my videos and they have fantastic results, fantastic outcomes.
Bill Gasiamis 9:06:04
Do you know? And the fact that you found that in India and other people have found that in all these other parts of the world, it’s so encouraging to me as well. It’s what makes me keep doing these interviews, and it’s what makes me keep doing this. So it’s such a fantastic thing. And now what’s even better is that I’m in Australia. You’re in India, you’ve got family in Florida, exactly where you need them to be.
Bill Gasiamis 9:06:29
You can fly into Florida, stay with them for a few days, got it, visit your family, go and get the procedure done, and then, you know, you can really appreciate the whole experience. It’s just like from one end of the world to the other triangle, part of the triangle, and then to this other part of the triangle. It’s just crazy. How how small the world has become, and how, how fascinating it is that you and I, we can connect, and then you can end up somewhere else simply because of one video. It’s just ridiculous. I can’t get my head around it.
Sunny Kakaiya 9:07:04
Definitely. And if something gets possible, I’ll meet you in Australia.
Bill Gasiamis 9:07:10
Sunny. Come to Australia for sure. Come to the Australia for the for you know, one of the cricket matches, maybe the the.
Sunny Kakaiya 9:07:19
II want to visit MCG.
Bill Gasiamis 9:07:21
Yeah, the MCG, yeah, come to the MCG. I live near the MCG, not far from the MCG, so we’ll go there. We’ll, go and see the test match or something, you know, it’ll be fantastic.
Sunny Kakaiya 9:07:33
Yeah, surely, definitely, we have a same interest.
Bill Gasiamis 9:07:37
First stop, Florida once you work out Florida, then you can come to Australia. Also, I just wanted to ask you, like, What’s the hardest thing about stroke for you?
Sunny Kakaiya 9:07:54
I don’t see anything hard just from physical perspective? Muscles get fatigued very frequently. You have to do a regular massages, keep oiling, because it doesn’t get fatigue, yeah, to continuously do exercise. That’s, the one thing, if you miss what, two or three days, also you will start contracting your muscles, and you will feel that you will start the pain in that. So if I take a break, if I don’t do exercise for two or three days, it immediately gets impacted. I feel that.
Bill Gasiamis 9:08:52
So the hardest thing for you is the way your body feels physically?
Sunny Kakaiya 9:08:57
Yeah, okay, so at least I do a squats. If I do don’t do anything now, I will do 40 or 50 squats in a day. That will suffice for a day. So if I take a break, I will only do squats. I will not do anything else.
Bill Gasiamis 9:09:22
What’s something that stroke has taught you?
Sunny Kakaiya 9:09:28
Stroke has taken my ego, it made me humble. It showed me the reality of life, you’re living in the cloud. You see the reality and start enacting on the things you want to do. Don’t do it later, later, later. So. Those things are very much impactful.
Sunny Kakaiya 9:10:04
Gave me courage to do many things like, if I have to walk again, I would take a step without asking anyone else I need to do it, I be little bit hesitant to go out alone, but I would take a step that should go out and do it. I need to, again, play a cricket that’s a dream. So I always tried to grab a bat, but I’m not able to do it. But very soon, I know I will be fine. So very positive with that.
Lessons From The Stroke Survivor StoryBill Gasiamis 9:10:47
So it’s given you a lot of new lessons. It sounds like you’ve gained a lot. Okay, there’s people listening now going through what you’re going through? Maybe they’ve just started their stroke recovery journey. Tell me about like, what kind of advice or encouragement would you like to give somebody who’s struggling at the moment with their recovery?
Sunny Kakaiya 9:11:15
Yes, I want to give advice to do a breathing exercise, a pranayama. And if you can do the pranayama for one hour or two hours, or maximum three hours, that is fantastic, because you are seated idle, you’re doing nothing, but if you do practice a breathing technique, you will actually activate the lost arm and the leg, and it will help in your spasticity and regain the neural networks again in the brain, so that actually helped me a lot of breathing technique.
Sunny Kakaiya 9:12:06
Right now, in recent times, I started doing Wim Hof breathing technique, which my friend introduced to me. So that is, like very much beneficial. You don’t get ill from that standpoint. So if you want to do this thing every day, you want to improve it. Start with five minutes, which you do, then you increase 10 minutes and get it till two hours or three hours. So you will see the difference in you within six months.
Sunny Kakaiya 9:12:45
And second thing, I would say, meditate. When you go inside the journey, you will find yourself, we’ve we’ve go outside and look some for everything, but real journey is inside. If you start seeing that, you will be, you will not be getting anywhere outside, or you distracted. You will not be distracted. So you have to see inside. That’s, that’s two thing I want to tell the world that breathing technique and the meditation is utmost. I currently one hour meditation, easy going every day I do it, nothing, no problem into into that.
Bill Gasiamis 9:13:40
I love what you said. That’s a such a profound statement, that the real journey is the internal journey, yep, yep, yep. That’s so true man, I practiced early on meditation and breathing very, very regularly, and it made a massive difference in my recovery. And what’s the best part about it is it doesn’t cost any extra. You don’t have to go anywhere to do it.
Bill Gasiamis 9:14:05
You can do it from your bed, you can do it from your kitchen, you can do it from your couch, you can do it from any location. And the benefits are so dramatic. The benefits are so good that it’s the biggest return what your time invested than anything else that you can do. And it’s still important to do all those other things, but meditation and breathing exercises give you such a return on your time invested that it’s just everybody 100% should be doing that.
Sunny Kakaiya 9:14:43
I believe in past life, also from a religious angle. So if we see of being a Hindu from that standpoint, we believe that we take 84 lakhs life before we take a human form. So currently, I’m learning something new into that, the past life regression therapy, in which I go into my past and see that why this has happened to me, stroke from that point of view. So that is something which is very focused. I’m still learning now. It is just one session done.
Bill Gasiamis 9:15:36
So when you say, why it has happened to you, what you mean is, what the purpose of stroke was?
Sunny Kakaiya 9:15:49
Correct. So in my past life, something, I would have wished it that I should be having this it has happened in this life. Maybe I’m just guessing it, but I’m figuring out so that theory is there that if we go and in the past and settle our karma, this thing will go away in this life. So I’m I’m just believing that that will happen. I’m very positive with that. Let’s see and life is to explore new things, so I’m exploring it right now.
Bill Gasiamis 9:16:32
I wish you all the best on your journey. Thank you so much for reaching out and being on the podcast. I really appreciate it. Thank you for sharing your lovely stories about how the podcast has been important for you. That’s really great to hear as well. And I look forward to hearing your update after you go to Florida. I would love to hear.
Sunny Kakaiya 9:16:57
Yeah, surely. And thank you so much, Bill. Lots of blessing to you, I would say. And you actually gave me the path from Gods will. So it’s, it’s very nice to connect with you, and it has been very good talking to you. It’s like a brother. Thank you so much.
Bill Gasiamis 9:17:23
Thank you, Sunny. I appreciate it. Well, that’s another episode wrapped up. I hope you found Sunny’s story inspiring, as I did. If you enjoyed this episode, please consider supporting the podcast by subscribing to our Patreon page at patreon.com/recoveryafterstroke.
Bill Gasiamis 9:17:43
Your support helps us keep bringing you these valuable stories and ensures that the podcast remains accessible to all those survivors. Remember to check out the show notes for details of our guests and links to their social media for full interview transcripts and more. If you haven’t left a review yet, please do it really helps others discover the show, and thanks so much for being here, and I’ll see you on the next episode.
Intro 9:18:13
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals, opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed all content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for information or purposes only and is largely based on the personal experience of Bill Gasiamis.
Intro 9:18:43
The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.
Intro 9:19:07
Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content, if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be, call 000 in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.
Intro 9:19:32
Medical information changes constantly. While we aim to provide current quality information in our content, we do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide. However, third-party links from our website are followed at your own risk, and we are not responsible for any information you find there.
The post Sunny’s Inspiring Stroke Survivor Story: A Journey of Recovery and Transformation appeared first on Recovery After Stroke.
Cerebral Venous Sinus Thrombosis: Symptoms and CausesCerebral venous sinus thrombosis (CVST) is a rare but serious condition characterized by the formation of a blood clot in the dural venous sinuses, which drain blood from the brain. Understanding the symptoms and causes of CVST is crucial for timely diagnosis and treatment.
Understanding Cerebral Venous Sinus ThrombosisCerebral venous sinus thrombosis occurs when a blood clot forms in the venous sinuses, preventing blood from draining out of the brain. This blockage can cause blood cells to break and leak into brain tissues, leading to hemorrhage. CVST can affect adults and children alike, with varying symptoms and causes.
Symptoms of Cerebral Venous Sinus ThrombosisHeadachesHeadaches are the most common symptom of CVST, occurring in 90% of cases. These headaches are often severe and persistent, differing from typical migraines or tension headaches.
Neurological SymptomsDepending on the location and size of the clot, CVST can lead to various neurological symptoms:
- Seizures: Sudden, uncontrollable electrical disturbances in the brain can occur, presenting as convulsions or other types of seizures.
- Focal Neurological Deficits: These may include weakness, numbness, or vision problems, often affecting one side of the body.
- Altered Mental Status: Patients may experience confusion, lethargy, or coma in severe cases.
Other SymptomsOther less common symptoms include:
- Nausea and Vomiting: Often associated with increased intracranial pressure.
- Papilledema: Swelling of the optic disc, visible during an eye examination.
- Difficulty Speaking or Understanding Speech: This can occur if the clot affects the areas of the brain responsible for language.
Causes of Cerebral Venous Sinus ThrombosisHypercoagulable StatesSeveral conditions can increase the tendency for blood to clot, leading to CVST:
- Genetic Disorders: Conditions such as Factor V Leiden mutation and prothrombin gene mutation.
- Acquired Conditions: Antiphospholipid syndrome, a disorder in which the immune system mistakenly attacks normal proteins in the blood.
InfectionsCertain infections can cause inflammation of the veins, leading to clot formation:
- Sinusitis: An infection of the sinus cavities.
- Meningitis: An infection of the membranes covering the brain and spinal cord.
Hormonal FactorsHormonal changes can influence blood clotting:
- Pregnancy and Postpartum Period: The body’s clotting mechanism is naturally increased during and after pregnancy.
- Oral Contraceptives and Hormone Replacement Therapy: These can increase the risk of clot formation.
Medical ConditionsCertain medical conditions are associated with a higher risk of CVST:
- Cancer: Particularly hematological malignancies.
- Inflammatory Bowel Disease: Conditions like Crohn’s disease and ulcerative colitis.
Trauma and SurgeryTrauma to the head or neurosurgical procedures can also lead to CVST due to direct injury to the veins or secondary to inflammation and increased intracranial pressure.
Diagnosis and TreatmentDiagnostic MethodsAccurate diagnosis of CVST involves a combination of clinical evaluation and imaging studies:
- Magnetic Resonance Imaging (MRI): Often combined with Magnetic Resonance Venography (MRV) to visualize blood flow in the brain’s veins.
- Computed Tomography (CT) Scan: Useful in identifying brain hemorrhages and other abnormalities.
Treatment OptionsTreatment aims to stop the clot from growing, reduce swelling, and prevent complications:
- Anticoagulant Therapy: Heparin or warfarin to prevent further clotting.
- Thrombolytic Therapy: Medications to dissolve clots in severe cases.
- Symptomatic Treatment: Managing seizures, headaches, and other symptoms.
- Surgical Intervention: Rarely, surgery may be needed to remove the clot or relieve pressure on the brain.
Prognosis and Long-term ManagementRecovery and Follow-upThe prognosis for CVST varies depending on the size and location of the clot and the underlying cause. Many patients recover fully with appropriate treatment, but some may experience long-term neurological deficits. Regular follow-up is essential to monitor for recurrence and manage any ongoing symptoms.
Preventive MeasuresPreventive measures include:
- Managing Risk Factors: Controlling conditions like hypertension, diabetes, and hyperlipidemia.
- Lifestyle Modifications: Regular exercise, a healthy diet, and avoiding smoking and excessive alcohol consumption.
ConclusionCerebral venous sinus thrombosis is a complex condition with a range of symptoms and causes. Early recognition and treatment are crucial to improving outcomes. Awareness of the risk factors and preventive measures can help in reducing the incidence of this potentially life-threatening condition.
Episode 316 Interview With Jenna MuscatJenna shares her personal journey of having an ischemic stroke due to Cerebral Venous Sinus Thrombosis at a young age.
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Highlights:
00:00 Recovery After Stroke Patreon Page
02:05 Introduction
03:38 The Early Symptoms of Cerebral Venous Sinus Thrombosis
08:17 Birth Control Pill As A Possible Cause Of The Stroke
11:59 Prematurely Discharged From The Hospital
16:19 Dealing With The Emotional Recovery
27:01 Four Years After The Stroke
33:23 Stroke Being The Worst And The Best Thing That Happened
40:00 Moving Forward After A Stroke
47:13 Taking Chances
53:49 Making A Difference In The World Of Stroke Recovery
59:07 The Hardest Thing About Stroke
1:03:23 The Lessons From The Stroke
1:09:23 Finding A Therapist
Transcript:
Recovery After Stroke Patreon PageBill Gasiamis 0:00
Hello everyone. I thought it would be a good time to let you know that recently, I set up a Patreon page. The purpose was to get some support to help cover some of the costs of the recovery after stroke podcast. Since 2017 I’ve been covering all the costs to keep this podcast running, but now I’m reaching out to our amazing community for a little help.
Bill Gasiamis 0:24
By subscribing to our Patreon, you’re directly supporting the ongoing production of the podcast. Your contribution helps cover essential costs related to recording, editing and hosting, ensuring the podcast remains available to every stroke survivor who needs it.
Bill Gasiamis 0:43
Your support will help us continue to transcribe each episode into subtitles for the YouTube version of the show, ensuring accessibility for listeners with hearing challenges. Our dedicated virtual assistant in the Philippines spends around four hours transcribing each episode and handles various behind-the-scenes tasks that keep the podcast running smoothly.
Bill Gasiamis 1:08
Your contribution will also cover the ongoing costs of monthly website hosting regular maintenance and storage for new episodes. This ensures that the podcast continues to operate smoothly and remains accessible to everyone in the community, as well as helping me with my goal to build the largest database of interviews with stroke survivors in the world, so no stroke survivor ever has to think that they are alone on the recovery journey.
Bill Gasiamis 1:38
Membership starts at $5 a month, and you can join our Patreon community by going to www.patreon.com/recoveryafterstroke today and help us continue providing valuable content for stroke survivors and their families. Your support makes a world of difference. Thank you for your generosity.
Introduction – Cerebral Venous Sinus Thrombosis
Bill Gasiamis 2:05
This is episode 316 of the recovery after stroke podcast today, we have an extraordinary story of resilience and transformation as we chat with Jenna Muscat. At just 22 years old. Jenna experienced an ischemic stroke due to a cerebral venous sinus thrombosis, a life-altering event that reshaped her future.
Bill Gasiamis 2:30
Join us as Jenna shares her remarkable journey of overcoming this challenge, navigating the complexities of stroke recovery and addressing mental health struggles, from facing intense fear and anxiety to finding strength in vulnerability and advocacy.
Bill Gasiamis 2:46
Jenna’s story is a testament to the power of perseverance and community support. Let’s dive into Jenna’s inspiring recovery story and learn how she continues to thrive and inspire others in their path to stroke recovery. Jenna Muscat, welcome to the podcast.
Jenna Muscat 3:05
Thank you. Thanks for having me.
Bill Gasiamis 3:08
My pleasure. Thanks for being here. Tell me a little bit about what happened to you.
Jenna Muscat 3:12
So I was 24 when I had my stroke. I’m 28 now, so it was almost four years ago. It’ll be four years in late August, early September. But essentially, I was just a very happy 24-year-old. I was a month away from graduating with my master’s from Pepperdine in behavioral psychology, I had a great job, I was just doing really well in life, and everything was going fine for me.
The Early Symptoms of Cerebral Venous Sinus Thrombosis
Jenna Muscat 3:38
And then one day I woke up with a headache. And I kind of got headaches a lot, so it wasn’t out of the ordinary for me, but this headache was very different, and it didn’t respond to, you know, any kind of medication. I went to the emergency room. They gave me a pain shot, sent me home, took the edge off, just the slightest bit, went back the next day, and the headaches just increasing during this time.
Jenna Muscat 4:04
They do the same thing, give me a pain shot, send me home, I sleep, I wake up, same thing, but now I have just extreme nausea, just throwing absolutely everything up. So I go back to the emergency room, and they do a braid scan on me, just a CT scan, no scans of contrast or anything. It comes back fine. They say, like, look, at this point, you just have a migraine and you’re really anxious. So here is some valium, and they send me home. And then some other really scary symptoms started showing up, just like a loss of balance. I couldn’t really walk.
Jenna Muscat 4:48
My hearing started to go out, I had really bad tinnitus in my ears, my vision started to go out. My peripheral vision was almost completely gone, and I would move my head in any position, if I would stand up, sit down. It would go completely dark for, you know, 10 seconds.
Jenna Muscat 5:05
I couldn’t figure out how to do things such as open doors. I would go up to a door and feel all over it and have no idea what to do to open it. But I couldn’t even connect the dots in my mind that I didn’t know what to do. So at this point, my dad said, I’m taking you back to the hospital. And I was in my room at the time, and he said, wait here, I’m going to go get my keys and we’ll take you to the hospital.
Jenna Muscat 5:30
And during that time, I guess I thought I could go to the bathroom by myself. And I don’t really know what happened after that, but I woke up on the floor in the bathroom, and my dad was like, trying to shake me to get me to wake up. So, not really sure what happened there. But after that, took me to the emergency room, they still didn’t really want to admit me honestly, because I had just had a clean brain scan the night before.
Jenna Muscat 5:57
And they were pretty certain at this point that it was anxiety. Because I will say, like at this point, my anxiety was super bad with the symptoms I was having, and everyone telling me I was fine, but they did agree to admit me, and then the next morning, they ran just a whole battery of tests. The first scan they did was a CTA angiogram with contrast, and about five minutes after that scan was done, I had multiple doctors rush into my room, and I knew as soon as that happened, like something’s not right.
Jenna Muscat 6:34
And the doctor that came in looked at me, and she goes, are you on birth control pills? And I was really confused. I was like, yeah, why? Like, they were actually sitting on my hospital table because I had been so sick the days before, I had forgotten to take them. And she goes, you can never take them again in your life. And I was just so confused. I had no idea what she was talking about.
Jenna Muscat 6:54
And I remember looking at my dad, my dad, looking at me, us looking at her. She was like, your brain is full of massive blood clots, you’re having a stroke, she said, the scan of your head also picked up the top parts of your lungs. And you’re also having a pulmonary embolism. They said, we need to get you to the ICU right now to start treatment, and from there, it was just kind of a blur.
Jenna Muscat 7:18
I was in the hospital for about a week on anti-coagulation treatment, IV Heparin, trying to break up some of the clot in my brain. And I had to go through a bunch of blood tests before I could transition to oral blood thinners and go home. But it was a lot. And then when I was in the hospital, they did an additional scan of my entire lungs and found an additional pulmonary embolism. But, yeah, that’s kind of my stroke and what happened to me.
Bill Gasiamis 7:51
Oh my gosh, yeah, that’s intense. I’m just listening to it and thinking, surely they checked her, surely they did this, surely they did that. But what they did is they judged you on your external appearance. They said she’s young, she looks fine, she doesn’t have slurring, she doesn’t have a droopy face, you know, so it’s probably nothing.
Birth Control Pill As A Possible Cause Of Cerebral Venous Sinus ThrombosisJenna Muscat 8:16
Yeah, and I think that’s been like, kind of the hardest part for me is just, I’ll never be able to wrap my head around like how me going to the emergency room with these symptoms and then having my medication list knowing I’m on hormonal birth control pills, how no one thought maybe we should check to make sure it’s not a stroke.
Bill Gasiamis 8:38
I think one of the reasons is because of the hormonal birth control pill is very rarely connected to stroke. So on the back of the pack, it says all the different side effects, and you know, stroke is one of them, but nobody really has that conversation and actually talks about it. It’s so commonly used by so many women that nobody really thinks about it like that. And most women haven’t had a stroke.
Jenna Muscat 9:06
Yeah, and if you do, you know, know about it, you never think it’s going to happen to you. Every pill has a side effect, anywhere from rash to like, of course, that’s not going to happen to you, but it’s going to happen to someone, and it could be you, and it was me.
Bill Gasiamis 9:19
I’ve been doing these interviews now for about 312 episodes, something like that. And the amount of women that I’ve spoken to who have had a stroke, who were around your age, and say, up until their mid 30s, because, well, nobody said it was because of the birth control pill, but who were on a birth control pill.
Jenna Muscat 9:41
Yeah you can’t definitively say so I’ve learned this. You can’t definitively say because there’s obviously no test to confirm it. It’s just a process of elimination from things you can test for, which I think also makes people downplay the role of birth control because there is no test to confirm it.
Jenna Muscat 9:59
So, you know, people will speculate, well, you can’t prove that, but you know, I had every blood test in the book trying to identify why this happened to me, from, you know, genetic factors to autoimmune disorders to cancer. I had every test in the book, none of it was flagged, like my only risk factor was hormonal birth control pills. But I think because you can’t put a definitive, you know, diagnosis on that, like people just downplay it, and no one takes it seriously.
Bill Gasiamis 10:31
And also, what they don’t do is, when they prescribe the birth control pill, is they don’t do genetic testing to see if the person has a blood clotting disorder, and therefore, if that person does and they’re on birth control pill, the risk of having clots occur because of the fact that they are both genetically predispositioned to it, and also then on the birth control pill, then the chances of having blood clots goes through the roof. So did you have an underlying physical reason as to the potential for blood clots?
Jenna Muscat 11:12
When I had my stroke? No, not to my knowledge, I did not have any kind of underlying clotting disorders. After my stroke, I had a whole hematology panel done by a hematologist testing for, you know, just like what we’re talking about, any kind of genetic factor, anything about me that would make me more prone to blood clotting, and all of those tests came back normal. So I’m just one of the very unlucky people.
Bill Gasiamis 11:36
Yeah, indeed. How long did you spend in the hospital?
Jenna Muscat 11:41
I was in the hospital in the ICU for about a week, but the onset of my symptoms from when they started to when I got in the hospital and they finally agreed to admit me was about a week as well.
Bill Gasiamis 11:55
And then you went straight home, or did you have to deal with some deficits that you had to overcome?
Prematurely Discharged From The Hospital
Jenna Muscat 12:00
I went straight home, I will say I was very lucky in my physical recovery from my stroke. There really was no lasting physical or cognitive impairments, which I am eternally grateful for, obviously. So after I was able to transition to Eliquis, which is a blood thinner in pill form, I was able to go home, and I kind of thought that once they sent me home, that meant that I was fine and I wasn’t fine.
Jenna Muscat 12:30
And I think that’s kind of where my mental battles started, is they sent me home, and I was still in an extraordinary amount of pain. I still had the same symptoms I had when I was in the hospital, because at the end of the day, I still had something in my brain that wasn’t supposed to be there, that clot didn’t just magically go away, it was still there, so all my symptoms were also still there, and it was honestly terrifying.
Bill Gasiamis 12:53
So you’re thinking, this is how I felt when I went to hospital. Now I’m at home, and I’m feeling the same, and it’s supposedly everything’s going to be better, and I also got these plots within me, and you’re probably wondering, what does that mean for my future?
Jenna Muscat 13:11
Yeah, I kind of felt like I was made of glass. I just thought, you know, at any point, I was just going to drop dead, and it was like this massive weight on me that I’ll never be able to put into words. But throughout my whole recovery, and, you know, honestly, almost four years later, even now, I still struggle with just feeling like the sky is about to fall on top of me, because that’s what happened before.
Intro 13:38
If you’ve had a stroke and you’re in recovery, you’ll know what a scary and confusing time it can be. You’re likely to have a lot of questions going through your mind, like, how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse? Doctors will explain things, but obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 14:02
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying and head to recoveryafterstroke.com. Where you can download a guide that will help you. It’s called seven questions to ask your doctor about your stroke.
Intro 14:22
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website now recoveryafterstroke.com, and download the guide. It’s free.
Jenna Muscat 14:40
And everyone told me I was fine, and every medical test said I was fine, and all of those people and tests were wrong. So now it’s like, I don’t trust myself, I don’t trust my body, and I certainly don’t trust doctors.
Bill Gasiamis 14:55
Yeah, that’s a shame. Your education and the particular field that you were studying in, was it psychology?
Jenna Muscat 15:10
Behavioral psychology.
Bill Gasiamis 15:13
So now you kind of have an insight, or you have an understanding of kind of how people go about behaving, making decisions, all that kind of stuff. Are you using what you learned in the past to kind of get your head around, to wrap your head around all the decisions that were made at the hospital? Are you overthinking that part of it? Where are you at with that whole experience?
Jenna Muscat 15:36
So basically, my job in behavioral psychology is I kind of decide for why people do what they do, because there’s always a reason or a function for our behavior, and it’ll always haunt me looking back like, what is it about me that made these doctors not care about my life? What did I say? What did I look like what was it that made it not worth it to them? And it’s definitely something that’s haunted me and that I’ve thought on a lot, you know, over these past four years. And you’d think that those feelings and, you know, wonders in your head would eventually subside, but they don’t.
Dealing With Emotional Recovery After Cerebral Venous Sinus ThrombosisBill Gasiamis 16:20
Yeah, it’s not you, so it sounds like you’ve taken it personally.
Jenna Muscat 16:27
You know, at first I did, I will say, like, when my stroke first happened to me, I didn’t know anything about strokes. I didn’t know anything. And so I thought that, you know, in the way I was diagnosed, the way I was kind of treated initially in the hospital, I thought I had a really bad experience, so I was like, you know, it’s fine. These things happen, like I just had a bad experience, and that’s okay I can take that and I’ll be fine.
Jenna Muscat 16:51
But after I started recovering, I joined support groups, I started advocating on social media and connecting with other survivors, and very quickly, I learned that I didn’t have a bad experience. I had a very normal experience, especially for young women. And I think I kind of thought there would be some sort of closure in that, like, I’m not the only one that dealt with it, but it almost was worse, because I was like, this is just how it is like, how do we fix this?
Jenna Muscat 17:21
So if this happened to me and all of these other people, it’s gonna keep happening, and not everyone’s gonna have as good of an outcome as I did, and it just honestly was very heavy because I didn’t know what to do to fix it. It’s like when it’s a problem that’s this big and this systematic, you know, it’s the systematic failure of our healthcare system. How, how do you fix a problem that big, like, I’m one person whose voice didn’t matter when I was in the hospital, you know, how do I fix it?
Bill Gasiamis 17:55
And you’d think that your voice would matter when you go into hospital, say, I’m feeling this, and I’m feeling that, and I’m experiencing this.
Jenna Muscat 18:00
When you go to the hospital, you expect the doctors to do their job. You expect them to take you seriously. And I felt like because I was a young woman complaining of head pain that had a seemingly clear CT scan, she must be fine. She must just be anxious. And I was brushed aside, and that sucked, honestly.
Bill Gasiamis 18:31
Big time, your experience is not uncommon. For women, probably, my experience as far as a man that goes right. I can only speak about that, but also anecdotally, what people have told me who I’ve interviewed, it’s been a cross section of the community, be it males, females, white, black, Asian, doesn’t matter. Like there’s been lots of people who I’ve interviewed who said I went to the hospital, I told them what I was feeling, and they said you’ve got a migraine.
Bill Gasiamis 18:59
Or at your age, they said you were drunk, or you’re taking some drugs. You know, what drugs have you taken that kind of stuff, and people were made to wait, etc. To be as lucky to be able to go back time and time again. You know, that should have been a red flag for them. But I think one of the challenges is that at the medical systems, all of them, doesn’t matter who I speak to, doesn’t matter what country they’re in, are all under pressure.
Bill Gasiamis 19:29
They’re all lacking funding, they’re all dealing with too many people, they’re all overworked. You know, they’re all stressed. They all got those things, and what they would prefer is to have one less patient. And if you know, they see X amount of patients that come in that fit your description, that have had a headache, and it kind of wasn’t nothing, and they managed to give you some painkillers and send you away and got you off their books, so to speak.
Bill Gasiamis 19:55
That made their work day a little bit easier. And it’s not personal obviously, and it’s probably not malpractice or anything like that, but it is probably an attempt to decrease their workload and just deal with supposedly, “people who are worse off” than you or need more help than you, right? So then it’s about patient advocacy, right?
Bill Gasiamis 20:26
It’s, how does a patient go into the hospital and know that they have to advocate for themselves? So you know, you’re in your 20s, you’ve never had a stroke before, you’ve never been unwell before, and how are you possibly going to know that what you need to do is go back and insist, no, there’s something that is wrong with me.
Jenna Muscat 20:46
I think that’s my biggest thing now, is, had I had the knowledge then that I have now about strokes and about, you know, the risk of birth controls, it wouldn’t have changed anything. I would have still gone on birth control. Everything has side effects, but I would have been able to better advocate for myself and get myself treatment faster. I would have known the things to say, I would have known the test to ask for.
Jenna Muscat 21:08
You assume that the doctors will do that for you. But, you know, obviously that’s not always the case, and so my biggest thing is just increasing awareness and helping educate people that that this can happen. You know, none of the advocacy work I do is to stray people away from birth control pills. I think it’s a great resource for so many women, but I think you know, knowledge is power, and it can save your life, and I want everyone else to have the knowledge that I didn’t have when it happened to me, because it would have really changed things.
Bill Gasiamis 21:38
Do you have other people that you know in your circle that are on the birth control pill? And have you guys had a chat about that, or has it not been appropriate?
Jenna Muscat 21:52
I mean, I talk with anyone about my experience, and I will never, you know, still to this day, I don’t think birth control is evil. I think it’s a great resource for so many women. I think there needs to be more conversations around the risks and the side effects. Think there needs to be more education on that. And that’s my biggest thing. I never want to tell people it’s bad or it’s wrong, but I want to tell people that this can happen to you.
Jenna Muscat 22:14
This is how to recognize it, and this is what you do about it. So that’s my biggest thing. And I think that’s a big misconception people have, is that, you know, I just think it’s this evil, horrible thing that everyone should get off of. And that’s very much not true. I just wish that everyone had the education that I wish I had back then, so that everyone can make the decisions that are right for them.
Bill Gasiamis 22:37
And also, I think it’s important if somebody’s going to go down that path is that they understand that perhaps they need to do some testing to see whether or not they have a blood clotting disorder to ensure that they are.
Jenna Muscat 22:53
Most of the you know, people I’ve connected with that have had strokes. A lot of them have had these underlying genetic conditions, or, you know, autoimmune disorders that increase their risk of clotting, and they didn’t know it till something bad happened. So I’m like, Okay, well, do we need to test everyone for these disorders, you know, before we put them on hormonal birth control pills. Like, maybe, let’s have a conversation about that. Because even though that wasn’t the case for me, that’s the case for a lot of people.
Bill Gasiamis 23:22
Yeah, I think it needs to be part of the “Here’s the prescription, and also here’s some information about other conditions that you need to be aware of, that you need to take some action on. Perhaps you need to investigate the possibility that you need to learn about yourself, your body, and what is happening in your body before you go down the path of adding a complication to it while you’re trying to do this good thing, you’re trying to be proactive and prevent unnecessary or unwanted pregnancy.
Bill Gasiamis 24:04
So you want to do the right thing, you’re taking the right steps, you’re doing all the right things. And then yet, I feel like missing a key bit of information for somebody who’s about doing the right thing, who’s trying to make the right choice. And that’s really the part that frustrates me when I speak to women who’ve had a stroke and they were in the birth control pill, and there’s also that whole, “we don’t really think it was that, and it probably wasn’t that”.
Bill Gasiamis 24:39
And it’s a real challenging scenario like I find it very difficult to hear. Just a quick break, and we’ll be right back to the interview. Now just imagine a life where the impossible becomes possible, where the challenges of stroke recovery transform into a story of triumph and growth. Well, this is my story, and I’ve captured it all in my new book, The Unexpected Way That A Stroke Became The Best Thing That Happened.
Bill Gasiamis 25:07
I know firsthand the emotional roller coaster of stroke recovery, the fear, the uncertainty, the frustration. I’ve been there and through my journey, I discovered that a stroke, while devastating, could become a catalyst for profound personal growth and positive change. In this book, I share my deeply personal story and that of another nine stroke survivors, offering you a road map to not only navigate your recovery, but to thrive in ways you never thought possible.
Bill Gasiamis 25:38
Are you ready to turn your challenges into opportunities? To find strength in your struggles? The unexpected way that a stroke became the best thing that happened is more than a book. It’s your companion on this journey, a source of inspiration and a testament to the power of the human spirit. To get your copy from Amazon today, follow the links in the YouTube description, or visit recoveryafterstroke.com/book and embark on a transformative journey towards a brighter, more empowered future, because the best chapters of your life are yet to be written.
Jenna Muscat 26:18
It is. And I mean, even you know, I dealt with that. I went to a cardiologist maybe six months after my stroke to, you know, dive a bit deeper into my pulmonary embolisms I had, and he was very adamant, like, I just don’t believe this was cause for birth control pills. And, you know, he had all my medical tests and it was, you know, the proof was there. Like, I have nothing else going on, but he still just would not admit that that was the issue.
Jenna Muscat 26:18
And that also was hard for me, because it was like, well, is there something else wrong with me? You know, I’m already dealing with this insane amount of health anxiety, and now I have this other doctor in my ear telling me again, not to trust these other tests, that there’s probably something else going on. And it’s hard.
Four Years After The Cerebral Venous Sinus ThrombosisBill Gasiamis 27:01
Yeah, you’re four years out. How is your health now? Like, where are you actually at with your health? Is there any more blood clots in there? Have they been gone? Are they gone? Where are you at?
Jenna Muscat 27:15
So I was getting regular brain scans for about a year after my stroke every couple months to check in on the status of the clots in my head. From the beginning, my neurologist told me that there’s a high likelihood they’re never fully going away, going to go away, because he said what happens is blood clots will calcify, and basically your body will form new blood vessels around it, and at that point, it’s pretty clinically insignificant, but they’re still there.
Jenna Muscat 27:40
And that’s what ended up happening for me, is my clots did calcify in my brain. Some of them did go away, but my main one is still there. And about a year after my stroke, I had already gotten off blood thinners, because at that point it was clear it wasn’t going to break it up any farther, and the risk of staying on them outweighed the risk of coming off, especially since I was found to have no other clotting conditions, I was given the green light to come off blood thinners, being that I was no longer on hormonal birth control pills, obviously.
Jenna Muscat 28:15
But I will say, you know, my mental health really took a big hit with all of this, and my health anxiety was crippling and paralyzing and horrible, and I thought every time I got one of my brain scans that it was going to tell me if I was going to live or die. There was absolutely no relief that came with good news, because I didn’t believe it, because my scans were wrong the first time.
Jenna Muscat 28:39
So I, you know, made the decision with my doctor to forego any additional scans unless something you know changed, if I had new symptoms come up. So per my last scan, my clots still there, I have new blood vessels around it with great blood flow. So that’s good. Besides that, my health is pretty good. I will say the kind of health anxiety from this and my just aversion to doctors and hospitals has made me skip a lot of doctors appointments.
Jenna Muscat 29:10
And things that I should be keeping up with to check on my health. So that’s something I’m still really working through. My mental health is an ongoing battle. You know, the PTSD from a stroke is very, very real. And I don’t think enough people, talk about it.
Bill Gasiamis 29:31
No, they certainly do not. It’s the thing about stroke, like it’s the gift that keeps on giving. It’s just so ongoing. It’s not funny. You know, I’m 12 years out, and a few months ago I did my book launch, about six weeks ago, I did my book launch, and I had this speech prepared, and this presentation and everything, I got up there, literally within about three minutes, I was crying in front of all the people who I was doing this presentation to.
Bill Gasiamis 30:02
Just the discussion of the process, the thing that I went through at the very beginning, 12 years ago, triggered this emotion that I thought kind of was not really there, not in that way, you know, like not that raw, and I couldn’t control it. And anyway, I took a few deep breaths, and I kept going. And then, sure enough, you know, few minutes in further down into the presentation, you know, it happened again, and it happened again.
Bill Gasiamis 30:34
And I just couldn’t understand, no, I can understand it, but I I thought that I had moved beyond that phase of my mental health recovery, and I have a long way, like I’ve come a long way, like heaps, but still, it could be the right day in the right place and the right audience, and it’s just sets me off. And then, I’m wondering, like how did I get here? And then, and then I realized, Okay, well, I’ve got more work to do. There’s way more work to do.
Jenna Muscat 31:16
Yeah, I think I’ve learned at this point that, you know, I always told myself when I was recovering from my stroke, I was like, if I can just get, like, the green light for the doctor to come off blood thinners, if I can just get a good brain scan. Like, I kept telling myself these milestones, like, if I can do this, then I’ll feel better. And then one by one, I hit all those milestones and I had never felt worse.
Jenna Muscat 31:36
And I think it was that realization like, this is never going to go away, and this is just going to be a part of me, and I have to accept that and learn, how am I going to take this thing that has seemingly like destroyed my life and broken me down, and how am I going to make it the thing that makes me stronger? And yeah, it’s hard.
Bill Gasiamis 32:01
Being so young. And I’m only saying this because I remember how thick I was when I was around 21, 22 years old. Like being so young and having just sort of finished school and all the things that you do when you’re coming into adulthood, do you feel like you are under equipped to deal with that kind of a situation just because of your lack of life experience?
Jenna Muscat 32:30
I don’t know that. Under equipped is what I would say, unprepared. I think when you’re young, you feel invincible. I know for me, like I know bad things happen. I’ve seen them happen to people around me. You never think they’re going to happen to you, and then it does, and you very quickly realize that life is just incredibly unpredictable and like the most heartbreaking way, like you can be fine one second and got the neck gone the next.
Jenna Muscat 32:57
Like I remember when I lost consciousness in my bathroom before my dad found me like, I just remember everything going black, like I so just, like it was just I was there, and then nothing. And that could have been where that could have been where it ended. And I think facing death so young is, I think it’s a good and a bad thing. It’s a situation that I think altered my life in such a, you know, such a massive way.
Stroke Being The Worst And The Best Thing That Happened
Jenna Muscat 33:23
I’ll always say, like, my stroke is the worst thing that ever happened to me, and it’s the best. I wouldn’t take it back. It was hell. But I think I’m a better person because of it. I think I live my life in a much better way now. It affects every decision I make now, because it’s like, I know what it’s like to lay in a hospital bed and to have like, these end-of-life regrets, almost thinking that you’re going to die.
Jenna Muscat 33:48
Like I so distinctly remember lying in the emergency room. My dad was there. He was talking to the doctors, and I so distinctly remember thinking like, oh my god, I’m going to ruin my family’s life. Like I remember thinking that I was just this, like a cannonball that was just going to implode and just hurt everyone around me. And I remember going through my family and thinking, what is my brother going to do when I’m gone? What about my mom? What about my dad? Like, are they ever going to be okay again?
Jenna Muscat 34:19
And that is something like that honestly haunts me a lot, like having those thoughts, but I think it’s also just changed me in such a good way. So I’m never one to to like to sugar coat things, or I don’t like just like toxic positivity, but I think if you can take something really bad that happened, you would find the good in it, then there’s nothing toxic about it. I think that’s just making the most of it. So
Bill Gasiamis 34:45
I love your concern about other people, like in the worst time of your life, you’re concerned about other people, and it reminds me.
Jenna Muscat 34:56
I so distinctly remember it too, like I just remember the chaos ensuing around me at this point, like, honestly, I had accepted that I was going to die, like it wasn’t a question, like I thought I was going to die. And I just remember thinking like, my dad, he had just bought a piece of land in Utah to build his dream house that he had talked about our whole life, that he had worked so hard for.
Jenna Muscat 35:16
He had just bought a piece of land three weeks earlier. And I remember thinking like, is he still going to build the house once I’m gone? I remember thinking like, I hope he still builds it. And I think that was the hardest thing, is just thinking that I was just going to ruin the people around me, and I wouldn’t be here to pick up the pieces. And that was hard.
Bill Gasiamis 35:36
I can’t imagine how hard it is. My particular experience was similar. So I’m sitting there lying in the hospital, and, you know, we’ve got a large Greek family. Everyone loses their shit as soon as something’s wrong with somebody, right? And then what happened was, for me, they had to tell the parents and the grandparents and sorry, my parents and the extended family, my in laws and all that kind of stuff.
Bill Gasiamis 36:04
And they all, you know, just panicked, and they all go nuts. And then I remember thinking like, I’ve gotta pretend that I’m better than I am, because if I appear to be better than I am, then hopefully they can all remain calm, and the more calm they are, the more calm I can be, and then we can have a better, more calmer approach to the whole what the hell’s going on, you know, situation in those very early days.
Bill Gasiamis 36:36
And the thing about me is they thought nothing of it initially, because I played it down as much as I possibly could. But then six weeks later, when I had another bleed, well, then that kind of threw a spanner in the works. And then my plan to stay calm and pretend that I’m okay, and all that kind of stuff went out the window. And then when it happened again, almost two and a half, three years later for the third time, then it was like, sorry guys, like, I’ve let you down.
Bill Gasiamis 37:05
I’ve pretended that everything’s okay, but it’s probably not. And then we had to do brain surgery, and then it’s like throwing them again into the deep end of crazy emotions, like, what’s going on? Where are we at with this thing, and why you still unwell, and how serious is this? And then waking up from brain surgery, not being able to walk again, it not being able to walk initially, and then learning to walk again, and all that kind of stuff.
Bill Gasiamis 37:33
And I feel like, the whole thing was about how do I keep them not being traumatized by this while I’m being traumatized by it the whole time? And then I thought about my kids and my wife, and it was ridiculous that I would even be doing that. I should be focusing on myself, but I couldn’t help it like you.
Jenna Muscat 38:02
It’s a lot, and I think a lot, you know, I think there’s such a negative connotation with being selfish, like we always just need to put other people first, but I think sometimes you have to put you first. And I think, you know, obviously, for me and you that’s something we struggle with, even if you know we’re the ones suffering from it, but at least in my perspective, I would rather myself suffer because I can control that. I don’t want someone else to suffer because I can’t control that.
Bill Gasiamis 38:31
I also love what you said a bit earlier about the fact that it’s the worst thing that happened to you and the best thing that happened to you, right? So I’m not sure if you know about my book.
Jenna Muscat 38:41
I did, and I caught the, what’s the book title? Again, something along those lines. The Unexpected Way That The Stroke Became The Best Thing That Happened. I mean, I completely agree. I completely agree not to take away from how horrible it was, because it was horrible, and it was awful and it was traumatizing, and I’ll live with it for the rest of my life, but I wouldn’t take it back.
Bill Gasiamis 39:04
It’s from a personal growth perspective, that it’s the best thing that happened to you, right? It’s clearly not from a medical perspective, right? No one’s saying, Yeah, let’s have a stroke, you know, like it’s going to be fun.
Jenna Muscat 39:15
Yeah I know, I would not recommend. But I mean, I think if you’re able to take that perspective and use it to your advantage, like your stroke can either make you or break you. You can let it be the anchor that sinks you, or you can let it be the thing that makes you better than you were before. And I don’t think it’s always that black and white, like I’m not saying this, as if I have this, you know, philosophical approach to everything, and I don’t still have hard days, like I’m on so many anxiety medications trying to control my health anxiety, I cry about my stroke, I have nightmares where I wake up and dripping sweat feeling like I’m paralyzed again. But you know, still, we persist and we move forward, because what else are you going to do?
Moving Forward After The Cerebral Venous Sinus Thrombosis
Bill Gasiamis 40:00
Absolutely nothing. You can’t curl up in a ball and capitulate. You definitely can’t do that. There is no point in that. That whole thing we spoke about that’s going to make your family even more uncomfortable and feel bad about the whole situation and not know what to do and be worried about you. So I think learning about what you can do to get better and overcome the things that you need to overcome, and then accepting the things that you can’t overcome.
Bill Gasiamis 40:31
You know, that’s really what the game is about. It’s about what do you do to take the next step forward, even though you’ve had a number of setbacks, and you’re taking those knocks, and then you’re end up 10 steps back, or 50 steps back, and then you gotta go forward. It’s like, I’m always what can I do to take me the next step forward? The podcast was that first, it wasn’t the first thing.
Bill Gasiamis 40:55
The first thing I did to take a step forward was get up and talk on behalf of the Stroke Foundation and do stroke prevention talks I did that year one after that, I used to do, I used to I went and got personal development courses that I attended so that I could develop my skills and work on my emotions and find new ways to navigate my daily life, right?
Bill Gasiamis 40:55
And to achieve some of my goals. Then somebody gave me a challenge and said to me, maybe you want to share what you’ve been learning. How do you want to share that? And I thought, I’ll just do that in my local community. I’ll do some talks or whatever. And then they gave me the challenge of, well, there’s this thing called the internet, you know, so why don’t you share it on the internet, right? And then I thought, Okay, I’ll do that. And I started the podcast, and then I wrote the book.
Bill Gasiamis 41:45
Like all the things that I’ve done are all about me looking for the next thing to help me get to the next thing that’s going to make me feel better, deal with this better, feel like it was, what’s the word? Like, uh, like, it was a thing that happened to me so that it could kick my butt, so that I could move, get on with things right, so I could take some positive steps in the right direction.
Bill Gasiamis 42:13
Not that I wasn’t. But want to compare myself today to the guy that I was before, like, a pretty mundane kind of boring kind of guy still doing all the amazing things like raising a family and working and meeting with friends and all that kind of stuff, but there was no real substance.
Jenna Muscat 42:33
I’m definitely the same way I look at myself before and I was such a wallflower, I walked into a room, and almost apologized for being there. I saw great things happen to my friends. I never thought they were going to happen for me. I never put myself out there. I was scared of failure, rejection, and those are all still things I struggle with. But now I just do everything scared, and I do it anyway, because it’s like I’d rather do that than do nothing.
Jenna Muscat 43:02
I think, you know, after I had my stroke in the hospital, you know, you think on your life, right? You think of these like end of life regrets, almost, and like almost everything I regretted was things I hadn’t done, things I was too scared to do. And so now I try to use that to change how I live my life now. And it doesn’t always abide by that I still struggle with being scared of you know, so many things, but you know, you try your best to work through it and to not make the same mistakes you made before.
Bill Gasiamis 43:28
I love the fact that you said that like you do it scared anyway.
Jenna Muscat 43:34
Do it scared. I mean, do it scared or don’t do it at all. What are you going to regret more?
Bill Gasiamis 43:40
And what have you learned like about fear?
Jenna Muscat 43:44
I’ve learned that fear. I think a lot of people don’t truly understand what fear is right, because we always think, Oh, I’m scared to do this. I’m scared to do that. But then something that happens in your life that shows you what fear really is right, like nearly dying, and then you realize that that kind of fear is, you know, the fear of rejection is nothing compared to that.
Jenna Muscat 44:05
Like, you know, you think about it and like it’s also insignificant, like we’re literally, like, on a floating rock in the middle of space, like it’s not that serious. And I think, you know, this sounds also philosophical, and I promise, I’m not always like that, and I still struggle immensely with putting myself out there and taking risks and chances, but I’m working on it.
Bill Gasiamis 44:29
Yeah, it’s good to have bouts of philosophy to stuff everything up right, and to like, test you, and to make you make a choice and make a decision that you struggled to make for such a long time.
Jenna Muscat 44:43
Like pushing the baby bird out of the nest and saying fly, I’ll probably hit the ground, but that’s fine. I’ll try again. Or, you know, I’ll get up tomorrow, you know, I’ll have an hour, and I’ll cry about it, but then we’ll move on. I think that’s my biggest thing now, is whenever I do something. I’m like, well, this could go horribly, this could blow up in my face. And before, I would have just not done it. But now I’m like, well, I’ll do it. And if it does blow up in my face, then I will deal with that then. I’m very much so now I will cross that bridge when I get there, instead of just being scared to cross it at all. That’s a gift that I’m so thankful for.
Bill Gasiamis 45:25
It’s way better to be that way instead of kind of being worried and concerned about what might happen that may never happen, right? You worry about all these things. For example, I’m doing a presentation in about a month at a Stroke Conference, and it’s about my book, but I have to deliver it kind of in a scientific way they don’t want me to go there and talk about my book. I’ve got 12 minutes, that’s all.
Bill Gasiamis 45:51
And you know, when I signed up for that, I hadn’t done the book launch yet, and as a result of that, after I cried at the book launch, I figured, oh my god, I’m going to be in a room in front of clinicians and all these people, and the last thing I want to be doing is crying. But I’ve accepted the fact that I’ve got to do the presentation regardless. I’ve signed up for I’ve been accepted, and I’ve got to accept the fact that I might cry, and I don’t know if it’s going to be a good day or not a good day, and I don’t know, but I’ve got to go for it. And what I found is crying in front of an audience anyway, that it sucks them in even further, like you don’t lose audience members when you cry. They empathize with you way, way more.
Jenna Muscat 46:44
You should never apologize for feeling your feelings, you know? Nothing good has ever come from suppressing them.
Bill Gasiamis 46:55
No, absolutely not, right. So that’s the thing, and it’s like, oh, well, I’ve already signed up, they’ve already accepted me. You know, what am I going to do? I’m not going to go and present on my book because there’s a slight chance I might cry, and the male ego in me doesn’t want to go down that path, you know, whatever.
Taking ChancesJenna Muscat 47:12
But imagine yourself, you know, back in the hospital right after your stroke, knowing that years from now, you’re going to be worried about crying on a stage to give a presentation about what you’ve survived, and it doesn’t seem that heavy anymore. That’s actually pretty cool.
Bill Gasiamis 47:28
It doesn’t indeed, exactly. And then I do go back, and I do have those conversations with myself about end of life regrets, and they do come up those, if I don’t do this, this is going to be an end of life regret, like, what are you talking about? You’re not going to do it. And that’s kind of the good part about being in hospital with all the machines attached to me after having a blackout, after not knowing my name, not recognizing my wife.
Bill Gasiamis 47:55
You know that’s the good thing about it, is it’s like I got past that and for the time being, I’m going to make the most of the amount of time that I’ve got left. And everything I procrastinate doing before, procrastination used to win. Now procrastination doesn’t win. Everything I am afraid or procrastinate about doing, I find myself kind of in this weird mode that I get into.
Bill Gasiamis 47:55
Like, when I applied to do this, to present at this particular conference, it was just at a moment’s ridiculous time, like, I think I was watching TV. It was about nine o’clock in the evening, and I knew about this Stroke Conference that it was happening. I said to my wife, I’m just going to jump online for a second and go and apply for this particular presentation. It was like one of those types of moments in about 25 minutes after worrying about it or mulling it over in my head for a few weeks.
Bill Gasiamis 48:21
It was done and it was sent across, and then I forgot about it, and then I received an email X amount of weeks later, which said, Oh, by the way, you’ve been accepted. Please complete this form. And it’s like I have these crazy kind of moments where my head kind of switches off. Everything goes away, all the worrying parts of me kind of just they have a moment of quiet, and then the true me goes, alright, now’s the time pounce.
Bill Gasiamis 49:20
Go and fill out that form and apply for this thing and get it done. That’s how the book launch happened as well. The book launch happened because the lady whose Cafe it was and the guy who runs the cafe, they said to me, why don’t you do a book launch at our cafe? You know, we’ll give you the venue. You know, you can bring some people there, etc. I said, All right, that’s cool.
Bill Gasiamis 49:41
And I never thought anything of it. And then she booked it. She just said, we’re going to do this, and started promoting it. And then I was kind of like, oh, okay, all right. Then, yeah, thank you. I’ll make sure I turn up. So. So that’s kind of how it happens for me now. And I look back, what’s cool about that, Jenny, is I look back and I go, Oh my gosh, like you did that. Well done. You know, I really do pat myself on the back.
Jenna Muscat 50:11
Yeah, I get what you were saying about procrastination earlier. I mean, I think my biggest thing now is again, this sounds so philosophical, but like life is unpredictable. Don’t wait around to take the trips. Don’t wait around to tell the people you love that you love them. Don’t wait around for these perfect opportunities. Just do it now, life is short. It’s unpredictable. So if you have the opportunity and you can do the things you want now make it happen.
Bill Gasiamis 50:43
Yeah, 100% agree with you. Tell me about your Tiktok account. There’s almost 10,000 followers there. What kind of posts do you put up there? How has that helped you with your recovery? How has it helped when you found people that are like you?
Jenna Muscat 50:58
So I started making tiktoks about, maybe a year and a half, two years after my stroke, I started just making silly little tiktoks about my stroke, and it kind of just took off. And from there, I started answering people’s questions about strokes, and it turned into me just advocating about strokes, advocating about the risk of hormonal birth control pills, advocating for, you know, speaking up for yourself in a hospital, and how to advocate for yourself in a hospital.
Jenna Muscat 51:30
And I have connected with so many amazing people, and so many people that unfortunately have stories, you know, very similar to mine, or you know, they have family members who had, you know, stories similar to mine, but they didn’t have the outcome that I had, and I’ve been able to connect with some really great people that I still keep in touch with to this day.
Jenna Muscat 51:53
I think, I found a lot of comfort, it feels like that. If I’m making tiktoks and I’m educating people that I’m making a positive impact and taking this thing that happened to me, and even though I feel like the problem is so big, maybe I’m, you know, helping one person, and it’ll save one person’s life, or and my biggest thing is It keeps me up, and it haunts me that this is just going to keep happening to people. So if I can help raise awareness and give someone that knowledge, that I wish I had, then I can sleep a little better at night, and it makes me feel a little better about the whole situation.
Bill Gasiamis 52:35
You really are making a difference, and I know that because I’ve been doing this now since about 2017 but I’ve been doing it seriously, probably for the last three or four years, where I’m putting one episode a week out. And it was about six months ago, somebody reached out to me and said, credit where credit’s due. Because of one of your interviews, I avoided a stroke.
Bill Gasiamis 53:04
And I was like, tell me more, what happened. And she she had a vertebral artery dissection. Anyhow, she had a dissection in one of her arteries, and it caused a headache, a certain headache, and I don’t know what keyword she typed into Google search, but she typed the particular keyword that brought up a video that I did with another stroke survivor who had the exact same condition, and the interview was with a lady who was describing her symptoms, and this person found that video, listened to it and thought, oh, that’s kind of like me, but not similar, not exactly the same.
Making A Difference In The World Of Stroke RecoveryBill Gasiamis 53:49
And then she went on to my YouTube channel and did a search for the particular videos in that playlist and found another one that was exactly like her symptoms. And then she told her husband to take her to the hospital. And they specifically told the doctors exactly what her condition was, what I’m experiencing, and I have a vertebral artery dissection. And of course, they would have thought that she was mad, but they scanned her head, and they found the dissection, and she completely avoided a blood clot forming and causing a stroke.
Jenna Muscat 54:31
That shows the importance of, you know, using your voice and your situation to advocate, because it does make a difference. That’s that’s what I hope comes from my situation, is I just, I don’t want anyone else to have to go through this.
Bill Gasiamis 54:49
It makes a difference. You may not know about it, because in the hundreds of 1000s of downloads that my podcast has had, that’s one person who’s actually reached out to say something I know a lot of people don’t reach out to say something, even though they might be having a positive experience, from watching a Tiktok or listening to a video, etc.
Bill Gasiamis 55:08
And that’s the cool thing about it, right? It really does make a difference. You may not have the evidence because somebody didn’t contact you, but 100% is, I know it makes people feel better, and that’s the good thing about socials and YouTube and all that kind of stuff. You know, people do get all upset and annoyed about some of the things that happen because of social media, but really, so many good things that come out of it. You’re using it for the perfect reason.
Jenna Muscat 55:38
I’ve had several people reach out to me and say, you know, since I’ve been on Tiktok, I think more young people are having strokes. And I was like, I don’t know that it’s more young people are having strokes, as if more young people are able to tell their stories now. Now you’re hearing about it, and I think that’s kind of the beauty of, you know, platforms such as Tiktok is you don’t just see posts from your friends. You see posts from strangers. You see the things that happen to them, and you’re able to learn about just people’s lives and the things they’ve gone through. And I think that that’s a really cool side of social media.
Bill Gasiamis 56:12
See, and there’s no other way that you could get in front of 934,000 other people when you wanted to share about the side effects of the hormonal birth control pill, like that video reached nearly a million views that’s so phenomenal, that is such a great thing, you know? And that’s potentially people in that group that are going to experience something and go, I think I remember hearing something about that somewhere, I better do something about this.
Jenna Muscat 56:46
That’s my biggest hope. Because I remember being in the hospital, and at the time, I had no idea what was happening to me, and it was terrifying. If I was able to think back to a Tiktok that I had seen that said, Oh, this one girl said this happened to her. Maybe that’s it. I could have said it to doctors. Maybe they would have been like, You’re crazy. You don’t know what you’re talking about, but let’s run that test to get her to shut up. That would have saved me a lot of time and a lot of trauma.
Bill Gasiamis 57:13
Yeah and then there’s that other video, women deserve better, right? Women’s Health is the hashtag that I’m seeing on that particular post, 2.3 million views on the fact that you’re saying I went to the hospital. I said this, and I said that, and they brushed it off, and they gave me valium instead of looking at my head and trying to work out what was going on. I mean, that is so powerful, because what that’s doing is telling people to trust their gut instincts that’s telling them to, you know, persist when they go to the doctor, to not just allow somebody to convince you that there’s nothing wrong with you when there in fact is.
Jenna Muscat 57:51
Exactly, I mean, I think the biggest thing is, like all you have in life is your voice and all you that’s all you have to advocate for yourself. And it’s really hard when you use that and it still doesn’t seem to do anything. And so I think that’s where we all just need to learn to advocate for ourselves and also, like, you know, maybe someone that works in a hospital will see my videos, and next time someone comes in complaining of a headache, they’ll think twice on it, you know, I I just hope something positive comes from it in whatever shape or form that might be.
Bill Gasiamis 58:28
I know it will. I definitely know it will. And then you’ve got another video there, 1.8 million views, like just those videos, 6 million views combined between those three videos where you’re talking about going to the ER doctor and the doctor again, you know, dismisses what you said. It’s just, it’s a great thing that you’re doing, and it is going to make a difference, and it is going to empower, give people, like an insight into what happens when they have a condition and they go to the hospital and something goes wrong.
The Hardest Thing About Cerebral Venous Sinus ThrombosisBill Gasiamis 59:07
It’s an awesome little Tiktok page there. And people who are listening and watching, there’ll be links in the show notes that you’ll be able to go to and connect with Jenna there and follow that Tiktok account. I think it’s really important that we follow it and then share, share those videos in our own communities to raise awareness. Tell me what was the hardest thing about stroke for you?
Jenna Muscat 59:34
The mental recovery, 100% I just, you know, always thought that once I was fine physically, that I would just be fine, and it was like, the healthier I got, the worse my mental health got. I mean, no one talks about that part of stroke recovery at all, but like I felt like I had survived a stroke just to have PTSD nearly killed me, like I felt just paralyzed by fear.
Jenna Muscat 1:00:01
I could not be by myself, I could not go to work, I thought the second that I stood up I was going to drop dead. There was no amount of doctor’s reassurance scans, reassurance tests, reassurance that convinced me otherwise. I was passing out in the MRI scanner machine getting my scans, because my anxiety was so bad, it was horrible, and I felt so alone.
Jenna Muscat 1:00:28
And it’s not that I didn’t have a great support system, because I had the best support system. My family and my friends were amazing, but I think at the end of the day, they just didn’t get it. Because I feel like to other people, it’s like, almost like you’re being dramatic, like you survived this, you’re fine, move on with your life, and it’s like, I would love to move on with my life, but I have never felt more, not fine before.
Jenna Muscat 1:00:54
And it was incredibly hard. It’s something I still deal with. Just about a year ago, it got really bad again, and it’s like, you know, it’s like, at this point, like, haven’t I given enough? Like, hasn’t this thing taken enough from me? And, you know, I have learned that this isn’t the last time I’m going to have hard days, I’m there’s going to be another point in my life where this health anxiety and the PTSD comes back and kicks me down.
Jenna Muscat 1:01:24
But I think what you know makes it a little easier each time is knowing that I’ve gotten through it before. It’s like when it’s bad every day is a bad day, and then slowly but surely, you start to have better days, until you don’t remember your last bad day, and then inevitably, you have another one. Because I’m certain at this point that healing isn’t this, you know, destination where you’re just fine.
Jenna Muscat 1:01:48
Like, I don’t think that that exists. I’m going to deal with this the rest of my life, and in some ways, that sucks, but you know, like, that’s okay. This is, you know, these are the cards that I was dealt, and I’m just going to make the best of it, and I’ll deal with those hard days when they come, and I’ll get through them.
Bill Gasiamis 1:02:06
You will. And as time goes, you’ll get better at dealing with them, and you’ll get more resilient, and you’ll grow a thicker armor, and you know, you’ll be able to really look back on it like I do, even though I have these, you know, bouts where it gets me, I look back on it as such a thing that happened so far away, like such a distance away that I almost can’t connect it to me anymore, because it’s so far away. I have all this proof that it happened, you know, scar on my head, a book, a podcast and all, but it happened so long ago, I can talk about it as if I’m sharing a story rather than something that happened to me. So it’s not re traumatizing me.
Jenna Muscat 1:02:54
When I think about it, it’s almost like it feels like a movie I watched or a book that I read, because I feel so different from that person that I was then that it almost just feels like a lifetime away, yet at the same time, still just like yesterday, but I just feel like I’m such a different person now, it’s like that couldn’t have happened to me but it did, and it’s weird, because you get in this weird place of having just such a distinct perspective about it.
The Lessons From The StrokeBill Gasiamis 1:03:25
And that’s the power in talking about it and connecting with other people. That’s the power, that’s not what you get from doing that. It might feel difficult at the time when you’re trying to go to those emotional spots and, you know, battle them and tackle them and talk about them. But eventually, what it turns into, it turns into like this distant memory that you reflect on, rather than re traumatizing yourself every time you speak about it. That’s kind of what I’ve got after 312 episodes or so. Tell me about what stroke has taught you.
Jenna Muscat 1:04:00
I think it’s taught me that life is very short, it’s very unpredictable. Just to cherish the now as as much as I you can and you could, that sounds so philosophical, but, yeah, life, life is very short. If you want to do something, do it now, you know, tell the people you love that you love them, and treat them like it, and do all the fun things you want to do, because you know, nothing’s guaranteed.
Jenna Muscat 1:04:31
It’s taught me that you know, as far as you know, health care has come. You still have a long way to go. I think, you know, it’s a whole another conversation about the side effects of birth control and why we aren’t doing more about that. But, yeah, I think, I think the biggest thing I’ve learned is just, life is short. It’s, painfully short and unpredictable. So. To do all the things you love and love the people you love, and enjoy it while you can, which sounds a little bit slower, but I don’t mean it in a morbid way like you’re going to die someday, but.
Bill Gasiamis 1:05:13
True, it’s still all true. What about there’s some people listening who are just on their journey. They’re starting out now, right? They’re looking for advice. Give them, you know, share some advice with somebody who might be going through something similar to what you’re going through.
Jenna Muscat 1:05:33
I wish that I had known that my mental health was going to suffer. I wish that I had known that post stroke, PTSD depression was something that most stroke survivors will deal with. I would say, get ahead of it. You’ve been through something very traumatic, maybe check out therapy like just get ahead of it and figure out what those supports are that you need, take care of your health, figure out what you need to do for yourself.
Jenna Muscat 1:06:02
You know, we talked earlier about, you know, worrying about how other people would react, like, figure out how what you need for yourself. And just know that, like, if you choose to, this can be the thing that makes you better. It can also be the thing that breaks you, and it will try to break you time and time again, but you’ve had the power to survive this, you also have the power to survive the aftermath.
Bill Gasiamis 1:06:30
Yeah, I love that part. That’s awesome, right? So I go to counseling irregularly now, but for many years, I went regularly once a month for many, many years, and now I just go kind of whenever I’m feeling like I need a bit of a top up. How are you dealing with all of that stuff, the PTSD and all that? Are you seeing somebody that is supporting you with that, other than the medication?
Jenna Muscat 1:06:57
Yeah so I’ve been in therapy. I started going to therapy about a year after my stroke, when my PTSD, really, you know, got really bad, and I think that was really important. I love to read couple books that I’ve read that are really good. What is it called the body keep score. Is one of the best books that I have ever read. It really helped me understand why it was my PTSD was making me feel the way that I was, and it just I’m the kind of person like I love knowledge.
Jenna Muscat 1:07:34
So understanding my anxiety was very big to me. I loved learning about anxiety, especially health anxiety, that that in particular. So therapy, reading, find what works for you. You know, not everyone is the same. Medication for me was life saving, and I will, you know, I know some people are want to steer away from that, but for me, it was something that I really needed.
Jenna Muscat 1:08:00
And you know, I’ve tried to get off it a couple times, thinking like, Oh, I’m doing better, and then quickly I’ll realize, like, if you weren’t doing better, the medicine was just doing what it was supposed to do. And that’s okay, because I think for a long time I, you know, had the mindset of, I don’t want to need this crutch for the rest of my life. But trauma is real, and it alters the chemistry of your brain, and sometimes you need a little extra chemical help to get through it, and that’s okay, and it doesn’t make you weak.
Bill Gasiamis 1:08:27
And you can keep trying to get off it as time goes. You can keep trying and keep trying, and it’s going to give you a good sense of where you’re at, and you then you’re going to be able to regroup, and you’re going to know what else you need to do and how much more work you need to do, and that’s okay. And I love what you said about that is that, you know, taking away that kind of stigma from being medicated to help with PTSD or anxiety.
Jenna Muscat 1:08:52
I know for me, like a big concern of mine, getting on medication was, well, this whole trauma that I’m dealing with was caused from a side effect of medication, and now I’m going to get on more medication. Like, what is this going to do to me? But, you know, it truly was such an amazing support for me, and still is, and I’m, you know, thankful for the life I live now, with the help of therapy and my friends and family and, you know, anxiety medication, it’s done wonders for me.
Finding A TherapistBill Gasiamis 1:09:24
Was it easy to find a therapist that you connected with? How do you sort of go about that? What was that like for you?
Jenna Muscat 1:09:33
Gosh, I think I’ve seen four therapists. I think it’s kind of like dating. You’ve got to find the right fit. And I think a lot of times, people can be discouraged because they go to therapy and it wasn’t good, but I feel like, you know you’ve got to find your right person, and then when you do that, like therapy is hard, it’s not always sunshine and rainbows, and you walk away feeling better.
Jenna Muscat 1:09:54
Sometimes it brings up really hard feelings and emotions, but it’s an ongoing process, and I would. You know, encourage anyone to stick with it and give it a chance to work. And also, like, if you try therapy and you don’t click with your therapist, shop around. Like, there’s a lot of really amazing people out there. And you know, there’s a variety of mental health issues that people people deal with. They’re not always going to find someone that clicks with what you need. But, you know, keep trying.
Bill Gasiamis 1:10:22
I think that’s really important. I know a lot of people say, you know, I’ve been to one therapist and no good. I’ve been to another one no good, and I’m sick of trying to find them or whatever. It’s really important that you find the person with the right fit, because what they do is they create a really safe space for you to do those hard yards, you know, to have that hard conversation that is going to be challenging and draining and whatever, but that’s the point of therapy. It’s to help you go to those places yet that you otherwise might not have gone to because it was going to be really hard.
Jenna Muscat 1:10:58
Really helps facilitate, you know, just becoming aware of everything that you’ve dealt with and how you’re feeling about it, because I think so many times, even if we don’t mean to suppress how we’re feeling, I know, at least for me, I’m very avoidant, and I try to bury everything, to just not feel it and not deal with it. But you know, as I’ve painfully learned it, it’ll always come out.
Bill Gasiamis 1:11:21
Yeah, I love, also, what you said about educating yourself and learning, you know, the book the body keeps score, and therefore, like knowing that what you’re experiencing, that that physical reaction, or that anxiety reaction, and you’re able to then to observe yourself, and you can go, Well, I know what this is. It’s not pleasant. It’s yeah, not unfamiliar, but I know what’s happening, and it kind of, it kind of takes the edge off. It does it mentally?
Jenna Muscat 1:11:54
It does. You know, my anxiety manifested very physically, ironically enough, in semi stroke symptom form, I would feel dizziness, I would feel numbness in my body. So I got stuck in this loop of my anxiety is caused from the stroke, yet my anxiety manifests physically into these almost stroke like symptoms. But then that’s what they told me when I went to the hospital when I was having a stroke, is that it was anxiety.
Jenna Muscat 1:12:20
So you get caught in this loop, but I think just me absorbing that knowledge. I mean, I read book after book after book, just learning, and the more I learned, the more faith I had in my own body and my own, you know, nervous system and understanding, like the fight or flight response and panic attacks and what that looks like.
Jenna Muscat 1:12:41
Because I think people throw around the word panic attack all the time, but then you’re on the floor, hyperventilating, and your body’s numb and you can’t move, and you’re like, This clearly cannot be just a panic attack, right? Like this is a medical emergency. So knowledge is power in all ways, shapes and forms. And that was one of the biggest things that helped my anxiety was just learning about it.
Bill Gasiamis 1:13:05
Yeah, thank you so much for sharing and joining me on the podcast. I really appreciate it. I think your approach, your philosophical approach to this, is to be commended. And it’s really cool that you can come on here and be so open about all the stuff that you’re experiencing. Because I think even some other stroke survivors like there may still be feeling like, you know, some of the stuff that they’re going through is taboo, too taboo in their community to talk about.
Bill Gasiamis 1:13:38
So they can listen here and feel normal and feel okay, that you know that it’s part of their recovery and that they need to maybe do some work about it. So I love the work that you’re doing on socials and Tiktok. I encourage everyone to go across and go to recoveryafterstroke.com/episodes, to find all the social media links. Thanks so much Jenna.
Jenna Muscat 1:14:04
Yeah, thank you for having me. I’m looking forward to reading your book.
Bill Gasiamis 1:14:08
Well, that’s another episode done. I do hope you enjoyed the discussion. Remember to subscribe to my Patreon page. Visit patreon.comrecoveryafterstroke. You will also find the link in the YouTube description and in the show notes of this episode at recoveryafterstroke.com/episodes.
Bill Gasiamis 1:14:28
If you want to know more about my amazing guests, also visit recoveryafterstroke.com/episodes to find out their social media links and to download a full interview transcript. A huge thank you to everyone who has already left a review. It does mean the world to me, your feedback is crucial for the podcast success, helping others discover this valuable content, and making their stroke recovery journey a bit easier.
Bill Gasiamis 1:14:56
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Bill Gasiamis 1:15:16
If you are a stroke survivor with a story to share, come and join me on the show. The interviews are unscripted and require no preparation. Just be yourself and share your experience to help others in similar situations. If you have a commercial product that supports stroke survivors in their recovery, you can join me on a sponsored episode of the show. Simply visit recoveryafterstroke.com/contact, fill out the form with the category that you belong to, and I will get back to you with details on how we can connect via zoom. Thank you once again for being here and listening. Your support means everything to me. See you on the next episode.
Intro 1:15:57
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Intro 1:16:14
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Intro 1:16:37
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Intro 1:17:29
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The post Healing and Hope: Jenna Muscat’s Ischemic Stroke Recovery appeared first on Recovery After Stroke.
Comprehensive Guide for Young Person Stroke SurvivorsStrokes can be devastating at any age, but they are particularly impactful when they strike the young. This post delves into the unique challenges faced by young person stroke survivors, offering essential information and support strategies to help them navigate their recovery and life beyond.
What Causes Strokes in Young People?While strokes are often associated with older adults, they can occur in younger individuals due to various factors. Key causes include:
1. Genetic FactorsSome young people are genetically predisposed to conditions that increase stroke risk, such as blood clotting disorders or certain heart diseases.
2. Lifestyle FactorsLifestyle choices, including smoking, excessive alcohol consumption, poor diet, and lack of exercise, can contribute to stroke risk even in young individuals.
3. Medical ConditionsCertain medical conditions, such as high blood pressure, diabetes, and autoimmune diseases, can elevate the risk of stroke in younger populations.
4. Trauma and InjuryHead injuries or trauma can lead to strokes, especially if they cause damage to blood vessels in the brain.
Recognizing the Signs of Stroke in Young PeoplePrompt recognition of stroke symptoms is crucial for effective treatment. Key signs to watch for include:
- Sudden numbness or weakness in the face, arm, or leg, especially on one side of the body.
- Confusion, trouble speaking, or understanding speech.
- Difficulty seeing in one or both eyes.
- Trouble walking, dizziness, or loss of balance and coordination.
- Severe headache with no known cause.
Recovery and Rehabilitation for Young Person Stroke SurvivorsRecovery from a stroke can be a long and challenging journey, especially for young person stroke survivors who may face unique challenges.
1. Physical TherapyPhysical therapy is often essential to regain strength, coordination, and mobility. Tailored exercises help rebuild muscle function and improve overall physical health.
2. Occupational TherapyOccupational therapy assists survivors in relearning daily activities and adapting to new physical limitations, focusing on improving quality of life.
3. Speech TherapyFor those experiencing speech and language difficulties, speech therapy can be crucial in regaining communication skills.
4. Psychological SupportEmotional and psychological support is vital. Many young stroke survivors experience anxiety, depression, or frustration as they adapt to post-stroke life. Counseling and support groups can provide significant help.
Long-Term Support and Lifestyle AdjustmentsAdapting to life after a stroke involves ongoing support and lifestyle changes to minimize the risk of recurrence and improve overall well-being.
1. Healthy Diet and Regular ExerciseA balanced diet and regular physical activity are critical in maintaining cardiovascular health and preventing further strokes.
2. Medication ManagementAdhering to prescribed medications and regular medical check-ups can help manage underlying conditions that may have contributed to the stroke.
3. Community and Peer SupportEngaging with community resources and connecting with other young stroke survivors can provide valuable emotional support and practical advice.
4. Education and AwarenessRaising awareness about stroke prevention and the unique challenges faced by young person stroke survivors can help reduce stigma and promote better support systems.
ConclusionYoung person stroke survivors face a unique set of challenges, but with the right support and resources, they can lead fulfilling lives. By understanding the causes, recognizing the symptoms, and accessing comprehensive recovery and support strategies, young person stroke survivors can navigate their journey towards recovery and a healthier future.
FAQs1. Can stress cause a stroke in young people? While stress alone is not a direct cause, chronic stress can contribute to risk factors such as high blood pressure and unhealthy lifestyle choices that may increase the risk of stroke. 2. Are young women at higher risk of stroke? Certain conditions like pregnancy, childbirth, and hormonal changes can increase stroke risk in young women, especially if they have other risk factors. 3. How long does it take to recover from a stroke? Recovery time varies significantly based on the stroke’s severity and the individual’s overall health, ranging from a few months to several years. 4. Can strokes be prevented in young people? Adopting a healthy lifestyle, managing chronic conditions, and avoiding smoking and excessive alcohol can significantly reduce the risk of stroke. 5. What support is available for young person stroke survivors? Support ranges from medical and therapeutic services to community groups and online resources specifically designed for young person stroke survivors.
Young Person Stroke Survivor Interview With Kenya RobinsonListen to Kenya Robinson’s inspiring journey as a young stroke survivor. Discover her recovery, lifestyle changes, and valuable tips!
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Highlights:
00:00 Introduction
01:00 The Beginning Of A Young Person Stroke Survivor Journey
07:43 Denial Of Stroke
16:37 Hemorrhagic Stroke And Deficits
18:15 Pros And Cons Of Caffeine
31:47 Getting Back To Jazzercise
40:30 Living With Altered Senses
50:23 Developing Body Awareness
1:03:36 Running After The Stroke
1:15:29 The Hardest Thing About Stroke
1:19:25 The Lessons From The Stroke
1:20:43 Grace After A Stroke
Transcript:
Introduction – Young Person Stroke Survivor Kenya Robinson
Kenya Robinson 0:00
Welcome to Episode 315 of the recovery after stroke podcast today we have an incredible story of courage and recovery as we chat with Kenya Robinson. While teaching a Jazzercise class Kenya experienced a hemorrhagic stroke, an event that turned her life upside down.
Bill Gasiamis 0:19
Join us as Kenya shares her journey of regaining strength and balance, overcoming denial and stress, and finding new ways to embrace life after stroke. From managing spasticity and the benefits of aerial yoga to navigating the challenges of family life, Kenya’s story is a powerful reminder of resilience and determination. Let’s dive into Kenya’s inspiring recovery journey and learn how she continues to thrive and support others on the path to stroke recovery. Kenya Robinson. Welcome to the podcast.
Kenya Robinson 0:52
Thank you for having me. I appreciate this.
Bill Gasiamis 0:57
Absolutely my pleasure. Tell me a little bit about what happened to you.
The Beginning Of A Young Person Stroke Survivor JourneyKenya Robinson 1:00
Oh, wow. Okay. So almost five years ago, I had a hemorrhagic stroke. I was teaching, I own a dance fitness facility and was teaching class and just kind of felt the effects of a stroke as it happened. I remember walking on stage, getting ready to teach class. And went to start the music, and my right hand couldn’t press play. And I thought that’s weird, I hit it with my left and, let’s keep going.
Kenya Robinson 1:42
I started to teach class, got through the heavy aerobic period, and was grateful when it ended. Because I felt winded and I knew with the strength portion coming up, I’d be able to kind of take a break, things come down a bit, I was in the middle of an upper torso routine when I lost the weight from my hand and I saw it dropping hit the floor.
Kenya Robinson 2:10
But in my mind, I was like how did that happen? Like, I don’t remember feeling it, it just dropped. Not long after that, balance started to become an issue. And I remember backing up against the wall and bracing myself and telling the class something’s wrong, but I’m okay we’re going to keep going with this routine.
Kenya Robinson 2:32
And they’re looking at me like, Oh, my goodness. And I see one of my members moved to her purse, and I figured she’s calling 911. Well, it’ll be okay, I’m just tired, I just need a little rest. And then when that song ended, I ended class and apologized because I felt bad that I couldn’t do it.
Kenya Robinson 2:57
But there really wasn’t no going on. The members rushed the stage and covered me in prayer. And I remember Andrea coming over to me and she said, I’m on the phone with 911 they want you to smile. I was like, No, we’re not gonna do it. And she was like, why? And I’m like, because that if I can’t smile, that means something’s wrong.
Kenya Robinson 3:22
And I don’t want there to be anything wrong with me. And it went from let me see you smile to stick out your tongue. And I was like, nope, not doing that either. I don’t want anything to be wrong. And that’s my last memory. I don’t remember the paramedics coming in.
Kenya Robinson 3:44
But I do remember getting on the ambulance. I don’t remember going into the hospital. But then there are conscious parts where I wake up and then go back to sleep. I missed an awesome helicopter ride. A little bummed about that to another hospital. Yeah, so that’s my story.
Bill Gasiamis 4:11
You’re an instructor what kind of an instructor?
Kenya Robinson 4:15
Oh, I’ve been an instructor of Jazzercise for 15 years in November.
Bill Gasiamis 4:23
That doesn’t sound like it’s a task, or a job, or a career that somebody who buries the head in the sand. Was this situation an instinctive thing to if I don’t express what’s wrong, then nothing is wrong. Was it like an instinct that’s like a survival thing? Or was it a mindset that came to the fore when all the things happen..
Kenya Robinson 5:01
To be honest, earlier that week, I had just felt like I was under a lot of pressure. Jazzercise is not my only job. It was not my only business at the time, I also had a tech based business, but I was running. And I remember saying, something’s got to change. I need to do things differently. Like, I don’t spend life living life, I spent, like putting out fires, I cannot take things a day at a time because it’s it’s happening as it happens.
Kenya Robinson 5:50
And I just remember the pressure of that. And my then husband at the time, I said, when I need to change something, and he’s like, Well, let’s sit down and talk about it right now. And I’m like, I can’t this week is so full, that I just need to get to Friday. If I can get to Friday, let’s sit down, let’s reorganize some things. Let’s talk about doing some things differently.
Kenya Robinson 6:20
And he said, Okay, that was on Saturday, I had the stroke Monday. So I didn’t make it through the week. But yeah, a lot of pressure, a lot of stress. And as a matter of fact, that was coming. Sorry, I had struck on Tuesday, as I was coming down, on my way to go to class, I was thinking this is the best part of the day, I’ll be able to just get stress out, let it go. And everything will be okay. But I think it was the events leading up to that. That really put me in the bind that I wasn’t expecting.
Bill Gasiamis 7:03
I imagined then part of it not happening, this is not happening to me, there isn’t anything wrong means that you can go back to your work to tech company and continue putting out fires, do all that kind of stuff. Continue doing the Jazzercising stuff.
Bill Gasiamis 7:18
So it’s like I’m too busy to be unwell kind of scenario. You might be surprised if I told you the amount of people who said exactly the same thing that you said, which was something’s got to change and then man, change came like nothing that they’ve ever wished before.
Young Person Stroke Survivor’s DenialKenya Robinson 7:43
Totally. I sit back and reflect, to comment on the first part of what you said, total denial, total denial, as it was happening, I’m in denial that it’s happening. And I was in that mode of less push a little more or less push a little more, let’s push a little more. Oh, see, we survived it less push a little more to the point of where my body was like, oh, no, we’re done pushing. And this is as far as we go. And I consider it a miracle that I hear. And I really feel like the stroke definitely changed my life. And definitely changes, especially now how I do things like after stroke, you kind of have no choice.
Bill Gasiamis 8:38
You either stay the same and suffer or change and recover.
Kenya Robinson 8:45
1,000%
Bill Gasiamis 8:47
You’re 49 at the time.
Kenya Robinson 8:50
No I’m 49 now I was 44 at the time.
Bill Gasiamis 8:54
You’re 44 at a time. So I imagine it wasn’t the only two years before the stroke that you’re pushing that hard. You’ve been pushing for a long time. It seems like it was just a way of life.
Kenya Robinson 9:10
Our family situation, I think was an unattainable one. We lived 40 minutes away without traffic from life, like work life, kid’s play life the social activities, it was 40 minutes with no traffic, you put traffic behind that. And then it becomes an hour and 10 minutes. So to get up and go to school, for me I think if you’re living locally, school is 5-10 minutes away.
Kenya Robinson 9:43
Well for my kids, they were up at 5:30, we’re on the road by 6:15 to get to school by 7:30. And back then I was like oh it’s family time. We’ll have this time on the road. We can talk about what’s going on, we’ll make it work. And I think it worked to our detriment because the kids would go to school, I’d go to Job A, which was one company and work until time to pick up the kids from school.
Kenya Robinson 10:17
I crockpot dinners at home, so like, bring them on the road, the kids would come to my office, they do homework, eat dinner, then the boys would go off to basketball practice. My daughter did tutoring, she tutored some students at the time. So she’d go and tutor students, or she’d stay in my office and work.
Kenya Robinson 10:38
And then I go teach the dance class, put everybody going pick up everybody from where they were, and then we’re on the road at eight o’clock at night, going that 40 minutes with no traffic, you get folks ready for bed. Now it’s 10 o’clock. And because I’ve taught a dance fitness class, I’ve got extra energy.
Kenya Robinson 11:02
So I’m like, Okay, we got win number three, let’s go to 2am in the morning, let’s finish some of the work. I didn’t finish from Job A trying to get to Job B. And then at two o’clock, I’m finally like, okay, I can sleep. But that alarm clock goes off at five o’clock the next morning. And it was that continual push every day, which is nuts, insane.
Intro 11:28
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like, how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse?
Intro 11:45
Doctors will explain things. But obviously, you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you.
Intro 12:08
It’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery, head to the website now, recoveryafterstroke.com and download the guide. It’s free.
Bill Gasiamis 12:28
I’m exhausted just hearing about it. They’re adults now. But there was just no way that I would have been able to get through like a year of that. So to paint the picture for me. First you’re single, then you meet somebody, then you get married. And there’s two people married with our kids. And then somehow down the track, you go from two people married with our kids, lots of time on your hands to do stuff to two people with kids and a shedule. That’s more relentless than the President’s shedule.
Kenya Robinson 13:15
Crazy and that was the weekdays on weekends, my boys played travel ball. So we’d be traveling up wherever whether it was in state out of state game started at eight in the morning. They just don’t play one game. Because if you win you play a second game, and if you win, you play a third game for the championship where you come back tomorrow. So the weekends were filled with sports and then just not attainable not attainable.
Bill Gasiamis 13:44
How old are the kids now?
Kenya Robinson 13:46
My oldest is 22. She just graduated from UCLA. That’s my daughter, my oldest son is getting ready to start his junior year of college and my youngest is about to start his senior year of high school.
Bill Gasiamis 14:05
So there’s a sounds like there’s a bit more space. They’re kind of more independent than they used to be.
Kenya Robinson 14:13
Definitely. And I’m grateful for that because it’s really given me the time to figure out how to manage my own recovering in this process. I did not give up the Jazzercise business I was told after the show, pick one business that you want to keep.
Kenya Robinson 14:32
And I chose to keep Jazzercise because it’s a fitness community of women that that exercise does more for mental health, physical health, total wellbeing. So it was important to me to keep that for the women. But then as I got further along in my recovery, it also became my rehab for getting stronger and improving on my I own. So I will always be thankful to Jazzercise for the program that they provide.
Bill Gasiamis 15:08
I mean, if you can be physically active after stroke, it’s one of the best things you can do to help recover and help heal your brain, even though it’s hard and maybe causes fatigue and causes all sorts of issues, perhaps the benefits definitely outweigh outweigh the negatives because I don’t think there’s any negatives unless you’re doing it in an unsafe way. And that means that you end up putting yourself at risk of falling or anything like that. So, you’re telling me, there’s no men coming to Jazzercise?
Kenya Robinson 15:42
We need men more who Jazzercise and I can tell you in my almost 15 years, there have been about five men who would come in and just dance. And it’s the time of their life like they do their own form of dancing to the movements. And then they really liked the strength part. And for the men who’ve come in and tried to go, wow, they really kicked my butt or wow, I didn’t realize it was so much fun. So I always encourage men to try Jazzercise. And now they’ve got an on demand program. So nobody has to know they can do it in secret if they like. But we’d like them to come out to our studios and try it.
Bill Gasiamis 16:27
It’s much more fun with the people around you with actual interactions and all that type of stuff. So what type of stroke did you experience?
Hemorrhagic Stroke And DeficitsKenya Robinson 16:37
I had a hemorrhagic stroke. It brain bleed three centimeters on the left side, hemiparesis on the right side, aphasia, and just the weakness throughout, which is tough place to be tough place all the way down from my head to my toes.
Bill Gasiamis 17:07
Drape down the middle of your body.
Kenya Robinson 17:10
Absolutely. Yeah.
Bill Gasiamis 17:12
I know that one. very intimately. But in your little questionnaire that you answered, you also said you’ve had this evidence of ischemic strokes.
Kenya Robinson 17:26
Yes, so the stroke that I had October 1 in 2019, I thought was my first stroke. I found out year two, almost here to that it was actually my third stroke, not my first. The first two were ischemic. But they had they saw effects on my brain that I never knew about. But I did suffer from migraines in the past. And so the doctors said that that could have been during one of those migraines that this skin shrugs happen.
Pros And Cons Of CaffeineKenya Robinson 18:15
As the of the my migraines were horrible, like no light, nausea, no, like sound would feel like somebody was kicking my head with the steel toed boots. Awful, awful. I haven’t had migraines, my migraines were attributed to caffeine. So I’ve have a diet that does not have caffeine, and I haven’t had a migraine and maybe seven years.
Bill Gasiamis 18:46
Caffeine is a bit of a there’s so many benefits for people to have caffeine, you hear about it all the time. You know, caffeine is, you know, enhances your mood. It does this it does that but it’s a drug. And it can be used really badly. Especially if you use caffeine when you wake up and don’t allow your body to go through its regular wake up cycle. And And it’s also can be for some people irritating on the gut, and on the esophagus.
Bill Gasiamis 19:15
And it can cause gut issues like that. Caffeine also can keep people up at night if you have caffeine too late, right. And if you’re a stroke survivor, and you have caffeine at the wrong time, and then you can go to bed and sleep then it’s a terrible cycle because in the morning, you’re feeling really crappy. You need caffeine. And what the thing about caffeine that people don’t realize is actually doesn’t do anything for you. What it does is it gets rid of the signal that tells you that you’re tired.
Bill Gasiamis 19:46
This is just a quick break and we’ll be right back with the interview. Now imagine a life where the impossible becomes possible where the challenges of stroke recovery transform into a triumph and growth. This Is My Story and I’ve captured it all in my new book The Unexpected Way That A Stroke Became The Best Thing That Happened. I know firsthand, the emotional roller coaster of stroke recovery, the fear, the uncertainty, the frustration.
Bill Gasiamis 20:15
I’ve been there. And through my journey, I discovered that a stroke, while devastating, could become a catalyst for profound personal growth and positive change. In this book, I share my deeply personal story and that of another nine stroke survivors, offering you a roadmap not only to navigate your recovery, but to thrive in ways you never thought possible.
Bill Gasiamis 20:39
Are you ready to turn your challenges into opportunities to find strength in your struggles, while the unexpected way that a stroke became the best thing that happened is more than a book, it’s your companion on this journey, a source of inspiration and a testament to the power of the human spirit. To get your copy from Amazon today, follow the links in the YouTube description, or visit recoveryafterstroke.com/book to embark on a transformative journey towards a brighter and more empowered future.
Bill Gasiamis 21:12
Because the best chapters of your life are yet to be written. So you’re still tired, but the caffeine interferes with the signal and just pretend makes you feel like you’re not tired. So it’s such a false sense of energy or that I’m okay, you know, your body is screaming and saying, Hey, I’m actually really tired. And what you’re doing is you’re just giving this thing to stop telling you that it’s really tired, and you’re pretending that you’re not.
Bill Gasiamis 21:44
So for all the benefits that suppose that the caffeine has, for some people, the stroke survivors, I recommend that they, especially initially, after the stroke, that they stop drinking caffeine, and that they try and avoid it as much as possible. I’ll have caffeine now.
Bill Gasiamis 22:01
But I try to have it after. And I’m talking about coffee. For me, it’s coffee. So tea is fine. But the issue for me is definitely coffee for some reason. And if I do have a coffee, I’ll kind of try and have it two or three hours after I’ve woken up so that I’m already awake, and my body’s gone through the sleep cycle.
Bill Gasiamis 22:24
And I’m not relying on the caffeine. And that means that I’m a bit slower to get going in the morning, you know, I have to warm up to everything before I can really get going. But it definitely has made a difference in the way that I experienced my brain and the fatigue that used to come with tricking myself into thinking that I was awake when in fact my body was tired in the mornings.
Kenya Robinson 22:55
I can relate 100% I’ve never been a coffee drinker. For me, I like green marcha, which has the antioxidant and the it’s got a little bit of caffeine in the morning. I don’t mess with it any other time? Yeah, because I do not want the migraine life back. No thank you.
Bill Gasiamis 23:19
There enough, I get headaches these days, that are pretty annoying. And they do seem like migraines. Nobody has diagnosed them or anything. But light sensitivity becomes an issue. For that particular time that it’s happening. My neck gets all tight and my muscles on the back of my shoulders or get all tight.
Bill Gasiamis 23:40
Sounds are really difficult to handle some pitches on those days are really harder to to handle. And I’m not I’m not so nice to be around on those days. But it’s kind of made trying to get get through it. And they seem more regular than they used to be. It’s really annoying. There’s two or three days a month where I’m just I have a headache for three or four days. It’s annoying.
Kenya Robinson 24:13
That’s scary.
Bill Gasiamis 24:16
So how easy was it to leave the other business aside? What did you have to do to walk away from it? Was it something that you had to sell? What how did that go?
Kenya Robinson 24:30
I had contractors that were working for me at the time. And the way that business started I was gifted my clients. So I gifted. I paid for it and gifted my clients to the contractors who are working for me at the time and they’ve been able to do some wonderful things. So you know, in this life, sometimes it’s time to say goodbye. We’ll Dubai’s are hard. I liked I provided weapon administrative support.
Kenya Robinson 25:05
I like creating content, digital content. designing websites, like it makes your mind think in a certain way, because there’s certain programming that you go through, you know, and B, then it goes to C and D, which may go to M. And you know, and I was sad to say goodbye to that business. Probably a year, year, end of year one, year two, I decided to take on a freelancing assignment just to kind of see, what is my brain do with it?
Kenya Robinson 25:47
Is it able to handle it? Is it too much pressure? Does brain fog kick in? Does fatigue set in? How do we pace it so that we can walk away from it if we need to come back? I’m grateful for the fact that those qualities, the characteristics, I’m looking for the word, it’s not coming right now. They still exist, but not at the same quickness? Like sometimes it does take walking away from it and coming back.
Kenya Robinson 26:23
To be able to keep pushing not I don’t want to say pushing through, because I don’t like that we’re not pushing through anything. But to figure it out. And um, for figuring out, does it have to happen in that instance? No. Can it happen tomorrow? Yep. Can it happen next week? Sure. Can Can it happen next month? Yep. It doesn’t have to be in the moment like before.
Bill Gasiamis 26:50
That’s a big difference. Huge difference. I can relate to that as well. So writing the book, took my book, my book, I wrote a book, it took four years. Do you know about my book? No. Well, it’s a bit of a strange title I’ve got I’ve got it here. It’s called the unexpected way the stroke became the best thing that happened.
Kenya Robinson 27:13
Congratulations, I will be picking that up.
Bill Gasiamis 27:19
And the title came about because in the podcast, I had a conversation with a few people around episode 70. That person said, stroke was the best thing that happened to them. Clearly not at the time of the stroke, it was down the track or reflecting on how their life has evolved and changed. That’s what it became right. And same with me, that was my experience.
Bill Gasiamis 27:43
And writing the book was something that I had never done before. In my life, I was an academic, I never went to college, I never read a book pretty much until I was 37, maybe just a few of them. And got to the stage where I had a deadline. So I had somebody helping me to write the book. And it was supposed to take a year to write it.
Bill Gasiamis 28:10
And I did two years of research to get the information that I needed to get the book ready in my head and then a year to work with this person to get it out of my head and put it into pages. Well, the writing part, the actual writing part took two years. And the person helping me wasn’t that pleased with the fact that I extended the contract, you know, from 12 months to 24 months, because she didn’t get any extra.
Bill Gasiamis 28:39
She didn’t ask for anything extra. But there was just some days, when no matter what, nothing was gonna happen that day, I was not going to write a month went by I still hadn’t written. And it wasn’t from a lack of wanting, not wanting. Every time I wasn’t writing, I was thinking about I need to be writing I want to be writing. So it was just about the physical part of writing was not possible.
Bill Gasiamis 29:07
My head couldn’t turn the gears and the cogs in my head couldn’t turn at the rate that I needed to so that I can form a sentence or form a paragraph, etc. And it taught me that well, you just have to write when you get that window. however long that window is sometimes it was three days. Sometimes it was an entire month I got a like a second wind and a window of opportunity.
Bill Gasiamis 29:35
And I punched out as much writing as I could then and then I hadn’t written for two or three months and I would get an email going. How’s the book coming along? And it’d be like, I can’t explain it to you because you haven’t had a stroke and I don’t want you to ever know what it’s like.
Bill Gasiamis 29:53
But I haven’t done anything for three months. I’m very open and comfortable telling you I’ve done absolutely nothing in three months. And then it’s like. And then initially, it was me feeling bad about that. And then later, it’s like, you either like it or you don’t like it, you either accept that or you don’t accept that I can’t do anything about it. You know? It’s just how it is.
Kenya Robinson 30:15
Yeah. It’s kind of the unique thing that I think anyone who survives a stroke, understands and knows. I’ve tried to explain it to people who haven’t had a stroke. And it’s not that you can’t, but it’s like you can’t there’s a physical reaction within the body that says no. And I think you get that once your central nervous system approaches that period where it’s like, I’m scared. I don’t know what to do. So it shuts down certain parts of the body, certain parts of the mind. And if it doesn’t get that rest, it doesn’t allow you to produce. So I totally get that.
Bill Gasiamis 31:11
I get that. And, and the thing about it was that the some I was on somebody else’s timeline. And that was a big mistake, because that was not a motivator. Although that’s how she worked with every other client that she ever had. And it probably worked well, because it made her clients accept that deadline and work towards it. Whereas I couldn’t work towards if my life depended on it. I just couldn’t I had to I could not be on her deadline, because I wasn’t going to make it.
Kenya Robinson 31:45
Our lives do depend on it.
Young Person Stroke Survivor Getting Back To Jazzercise
Bill Gasiamis 31:47
Well, yeah, it depends on me not making that deadline. Because there’s no pushing through. For me, it’s a brick wall, you get to it. And then you have to rest to find a way around it. And pushing through was never going to work. So then you’ve slowly let go of one of the businesses and I imagine at the beginning, you’re not actually doing Jazzercise. You’re not back to that immediately. How long did it take you to get back to that?
Kenya Robinson 32:20
Awhile I’m, I want to say I had the stroke in October, I was released from outpatient, the following May or June. And they released me to begin teaching. That didn’t come right away. Probably by that October, November, I taught my first strength class. And even so that was a challenge.
Kenya Robinson 33:02
But in getting ready for it, I spent a lot of time in the floor. Let it and I always laugh about this, because anytime I talk about the floor, my memory is being back to rehab, and then dumping me out of my wheelchair and they’re like, Get up and I’m like, What are you talking about? You’re cool people, how dare you touch somebody who can’t move out of a wheelchair.
Kenya Robinson 33:26
And she got on my level. And she said, you may not always have someone to be with you, there may come a time that you’re alone, and you have a fall. And you need to know how to get up. Whether it’s getting to a couch, a chair of phone, you’ve got to take care of you. And I think that was an incredible lesson to teach when you’re kind of fragile, because it builds some strength in you to know that in a situation where you are. You don’t have what you need that you can get what you need to take care of you.
Kenya Robinson 34:10
So I took that and started all of my exercises in the floor. I would crawl because when you’re a baby you crawl and it helps you with balance. I did a lot of floor exercises. So when I taught strength, it would be from the floor to be able to get up and manage that balance. I did strength classes for probably a year and a half and then decided in 2023 that I would try the dance portion again.
Kenya Robinson 34:46
I think it’s okay. Does it look like it did before? Absolutely not. Is it getting there, I think for what it is now, I’d like to be able to do better. But I’m, I’m satisfied. But it took a lot like I’d spend nights just visualizing myself doing the movement. Or if I was in a car, I play the music repeatedly.
Kenya Robinson 35:24
Most of my customers seem to think that our class probably took what it would take an instructor normally to prepare, you know, maybe like the night before two days before, it actually would take me months to prepare one set, and then get into the mode of moving a song or two out or a new song in and having to play it for months, and rehearse it in my head, then rehearse it on the body, to where it felt more natural.
Kenya Robinson 35:55
The mirror has been so very helpful in correcting movements, because it gives my brain a chance to view what my body wants to do, even though my body does it one way, and my brain thinks that another when we teach classes we teach to the class. So my real, my left is actually my Jazzercise, right.
Kenya Robinson 36:23
So I’m killing the opposite. That has also been a play on the brain. But very helpful, I’m grateful for Jazzercise for so many reasons that it’s yeah, a lot very grateful, because it’s just help to just trigger trigger trigger in the mind to do different things.
Bill Gasiamis 36:48
Being able to be connected to your body is a big benefit. But as in having the skills, because of the work that you had done, previously in Jazzercise, already puts you a step ahead, because you have got neurons, and neuronal patterns and things firing in your brain that are connecting to your body more than most people.
Bill Gasiamis 37:28
Because if somebody is not as active, as you say, this identity and the majority of their time, they just spent sitting at a desk working for 15 years, instead of playing a sport or being physical in that way, you know, they’re having to rebuild all of those neuronal connections and structures from scratch, to try and just get back to basic level, whatever that level is for them.
Bill Gasiamis 37:58
Whereas you’ve got like that advantage from the beginning. And because of your deep work in that space, you can visualize and you can, you can translate what you’re seeing into a language that your body understands. And vice versa, you can take your body’s language, you can observe it, and then you can adjust it and then you can fix it. And you can do that.
Bill Gasiamis 38:28
That’s your skill. But that’s kind of what’s necessary for when you’ve got a body like ours, which is numb on one side and gives different feedback than the right side. So I’m born in June, so I’m a Gemini. So I now say that, you know, now I have the body of a Gemini, you know, one side completely different than the other side than our proper two personality kind of situation going on there.
Bill Gasiamis 38:58
And the best way to describe it to people so they understand. What it feels like to be me is that if I have an alcoholic drink, which I do from time to time, very rarely, but when we go out and it’s the right opportunity. My left side will get drunk immediately. While my right side is not. And recently, also experienced, nor recently often experienced in warm weather I experienced sweating on my left side but not on my right side. Interesting.
Kenya Robinson 39:36
Interesting. I have awareness with pain, the post stroke pain, got to be crazy. Learned how to calm things using the brain. But now things that should hurt, don’t. Like I go to the dentist and it’s like you’re probably gonna have pain for, nothing. I scratched or Bruce my hips never felt it. There’s bruising there, never felt it. And anything happens on the left side. I don’t feel I had surgery two days ago. No pain, there was little soreness yesterday, no pain.
Young Person Stroke Survivor Living With Altered Senses
Bill Gasiamis 40:31
Yeah, my wife will get in trouble because she will touch my hand gently. It’s really painful.
Kenya Robinson 40:42
My gosh, I can’t even sleep with sheets on the bed. Because to pull the sheet. Oh, that painful.
Bill Gasiamis 40:50
I have to sleep on my left side. So the sheet doesn’t touch my left side. So that squashed into the mattress so that it numbs the senses. So the senses don’t fire. And then my mum being just being herself, I’m standing in the way at her kitchen. She wants to walk past and I’m standing in her way. And there’s chitter chatter going and everyone’s talking and it’s loud.
Bill Gasiamis 41:19
And instead of saying, Can you move, she goes to pinch me on the butt, you know, just to make me move. And I can’t feel it this time, because when you do it hard, it doesn’t register. Like, like you said, like a punch would register on my right side. But on my left side, it kind of just registers like a push. Yeah. And she was pinching me and I wasn’t budging, or wasn’t moving at all.
Bill Gasiamis 41:45
And she’s going, can’t you feel me pinching you get out of the way. And I said to her, how long have you been pinching more, she goes too long. Get out of the way, look, sorry I can’t feel it I had no idea, you should have said can you please move. And it’s just like, the completely different parts of the body. So like I imagine, because I avoided physical exertion and exercise for a long time.
Bill Gasiamis 42:12
Because my thing is the gym. So I don’t mind going to the gym and just pushing the lightweight, just to get everything working and moving, etc. But I was afraid that if I go to the gym, I wouldn’t be able to judge my left hand, and it would let go or give way and then I’d be out of balance. And then I’d be struggling to lift the barbell or whatever. And I avoided it for many, many years, because I was afraid that I might drop a barbell and injure myself or somebody else, or, or dumbbell or something.
Bill Gasiamis 42:47
And recently, I went back and it’s and it’s that whole thing is not only do I have to pay attention to form and make sure I’m lifting carefully, just under normal circumstance, I’ve got to make sure that my left hand is in the correct position. It is capable of holding the weight that my right hand can definitely hold.
Bill Gasiamis 43:09
And that we’re getting an even movement so that I’m not putting, you know, pressure on one muscle group that I shouldn’t be or causing myself harm or something like that. getting my head around that has been a completely different experience than just like kind of coming to terms with my body through weights is again another level of learning and understanding that has just started that is going to take a while for me to get used to because I’ve got used to this weird version of my body all the other stuff. I’ve got used to it by now. But now throwing weights into the mix has started again, the learning again.
Kenya Robinson 43:55
It’s a whole other thing of balance.
Bill Gasiamis 44:01
So, in one way, that all the work that you did with Jazzercise, like is so beneficial not only for the things that you’ve already mentioned, but also the fact that you’ve just got way more going on in your head that’s around movement in particular directions, etc. That you’re, you’ve got that like advantage. I feel like it’s an advantage. Definitely.
Kenya Robinson 44:24
I agree. I definitely agree. It gave me something to hold on to that I know works. Because after the stroke, nothing felt like it worked on things that you know, easy things to do, like brushing your teeth and my right side is my dominant side. So how to to learn how to eat with my left hand. You know, it’s a lot of major changes but having Yeah, having that familiarity definitely gave me a starting point, or this is something I know.
Kenya Robinson 45:11
And even if it’s not the way I know it should look, we can start somewhere in practice. One of my physical therapists said, when we began that it takes three to 5000 times of doing something for to build one, Nora Graham. And that’s kind of how I’ve approached everything. Okay, we guide you through to practice in time. So let’s get busy locked in, let’s go. In this case, kind of, yeah, just been the approach. Let’s repeat, repeat, repeat, until it becomes something functional that we can accept.
Bill Gasiamis 45:47
How did they rectify the bleeding blood vessel in your head.
Kenya Robinson 45:54
I didn’t have to have surgery, they decided that they were just gonna watch it. And then I guess the blood kind of moves around the brain and absorbs. That became an issue again, when. So I mentioned earlier, the post straight shot pain was incredibly painful.
Kenya Robinson 46:18
And the therapists that dumped me on the floor in the wheelchair, recommended that I try aerial yoga, she brought someone to my home, who set up the apparatus, put me in the hammock and allow me to hang upside down. All the pain went away, my body did not know what to do with that. No pain upside down. talked to my doctor about it. And she’s like, you’ve had a hemorrhagic shock, you’re not supposed to be upside down on your head, I’m like, Look, I have no pain when I’m upside down.
Kenya Robinson 46:52
Like, the whole world should be in a hammock that like this is a beautiful thing. So she’s like, Alright, no more, maximum, two to four minutes upside down. But since I’ve started that, it’s changed my life, I could be in a huge flare, go upside down, nothing, bring then know what to do a bit. I’m happy the brain doesn’t know what to do with it. But that’s been another lifesaver. So it’s, sometimes you gotta get creative.
Bill Gasiamis 47:22
That is so interesting. So I know the doctor is going well, we don’t want to increase the blood pressure in your head, in case we create a situation where it might leak again. So I get that. Was there an underlying cause of why that blood vessel burst? Was it a faulty or malformed blood vessel? Or was it just that thing that people say is relaxed, you’re gonna pop a blood vessel, and that you actually popped a blood vessel?
Kenya Robinson 47:55
I don’t know. I do know that. When I got to the hospital. My blood pressure was off the charts. ridiculously high. But they’ve said the amount of stress that I was under at that time, could have led to that too, because I don’t have family history of shrug. Like, yeah, so this is kind of thing, I still would like to know that I’m still investigating.
Bill Gasiamis 48:27
And your blood pressure has returned to normal.
Kenya Robinson 48:31
Say it again?
Bill Gasiamis 48:32
Has your blood pressure returned to normal?
Kenya Robinson 48:34
Yeah. I was told that for the first five years, it has to be managed with medication. But if my numbers are good, then there will be a weaning off of sorts after the five years. So October 1, is that deadline for me.
Bill Gasiamis 48:54
Is there any other medication that you are required to take?
Kenya Robinson 48:58
The blood pressure is the only medication. The spasticity with the pain was bad, and I started baclofen then, but it’s been as needed. So I’ll take back live in before I teach a class and it tends to relax those muscles so that I can have a little bit more lyrical ability. So if I’m feeling tense, or I’m nervous, because sometimes you learn new routines, you want it to be fun and class doesn’t care, they just want to jump around and move in feel the excitement, but for us type A personalities, you know, we want to do it right.
Kenya Robinson 49:44
I can feel my body instantly start to lock and I’m like, okay, you know, now 45 minutes before class, I’m breathing, I’m meditating or I’m doing the breath work to get the muscles to settle down and I will use Bach loopback of in But time to kind of help with that. If I don’t have to use the medication I don’t. But I have found that that is definitely helpful with specificity because then I’ll be able to move a graceful arm rather than it’d be rigid. They’ll just flow. And that’s what we want. So, yeah, those are the only medications that I’m taking.
Developing Body Awareness For A Young Person Stroke SurvivorBill Gasiamis 50:22
That’s pretty cool awareness though. Now stroke has done that to me, like it’s given me an insight into what your mood, your mind and the way that you’re speaking to yourself how it impacts the body, because the left side just responds, immediately, it gets tight, it’s tense. If I eat the wrong food, the left side gets weaker, it doesn’t respond so well to stimulus and all that kind of stuff.
Bill Gasiamis 50:52
So it’s all completely weird, like, so when I’m tired, you know, my left side goes to sleep, and it’s almost out out like a light and my right side, still pumping and going. But it’s telling my right side, hey, we need to rest and settle down. Yeah. And it’s a big indicator, it’s hard to it’s impossible to ignore, because you now have this complete system of information that says, Alright, you’ve got to stop, you gotta rest, you got to do less, or you got to change something.
Bill Gasiamis 51:33
So, what was family life like when you’re first diagnosed? Were you. I think what you said a bit earlier was that you’re in hospital for quite a number of time before you got home. Was that right?
Kenya Robinson 51:47
I spent six days in the hospital before they sent me to rehabilitation. I actually thought they were sending me to a nursing home. I was really sad because I was like, was my family going to leave me there. And when I got there, and they explained, you’re here to be able to learn how to function where your body is. So we want to be able to teach you some independence.
Kenya Robinson 52:17
And I was happy about that, because I was wheelchair bound. When I got to rehab, I was supposed to be there for three weeks to start. And I remember telling them no, I won’t be here for three weeks. My birthday is October 20. And I want to be done on the 19th. And they were like, yeah, it didn’t work like that. And I was like no, like, you have a plan for me. I plan to work it.
Kenya Robinson 52:49
I’d like to be out by the 19. And I was out by the 19th in a restaurant on the 20th celebrating my birthday. It just became in my mind like it’s go time whatever they ask, we’re going to do if they want to throw in extra, all these things, we’re going to have to remember Anessa the thing they hit me with when I went into rehab, she was she the nurse said yes.
Kenya Robinson 53:14
And you may suffer from aphasia. And with aphasia, you forget things you’ll be forgetful and I was like no, we’re not doing that. Like forgetfulness is a pet peeve. I don’t like that. And she was like, you have no control anymore. And I was like, No, we’re gonna have control. So day one, I was like, okay, chocolate chip cookies. Day two, the sky is blue. Okay, chocolate chip cookies, the sky is blue.
Kenya Robinson 53:42
So every day became something to remember from the previous day. And it became like this long thing of a habit. So that things didn’t get jumbled or scary. The fact that the words get jumped, that still happens, unfortunately, but the ability to figure out what it is. Now it’s a process of me slowing down, taking the time to think and if it doesn’t come out right away. That’s okay. I’ll find five or six other words of what I’m looking for before I finally get to it. That’s okay, too. So you play you know.
Bill Gasiamis 54:26
Take it as a game if you can and that I love that what you said about, you know, chocolate chip cookies, the sky is blue. Like, that’s just such a simple memory exercise might be hard for some people to get through. But it’s simple game to play, you know, and you could even attach that to a calendar. You know, you could even say Monday.
Bill Gasiamis 54:52
There was a chocolate chip cookie for lunch and then Tuesday, I went out and I looked up at the sky and the sky was blue like You can create a whole little sentence and thing that supports memory. And it’s just, you can do that, without any extra time or effort, you can do it sitting down, you know, you can do it, when you’re lying down in bed, you could do it at any time whatsoever.
Kenya Robinson 55:23
I’ve kept the practice at the start of the start of each year, I challenged myself to do something different. So this year, I bought a huge wall calendar that the from January to December, it sits on the wall, I’ve had trouble writing for the very longest. So in order to remember placing, at the end of each day, I’ll write down what I’ve successfully accomplished on a sticky note, and it goes up for that day. And I’ve kind of when I thought about doing this in, in January, it was for the piecing and the remembering.
Kenya Robinson 56:12
And then also, we need to celebrate the small successes. Because as you’re trying to get past all of the deficits of a stroke, you’re only thinking about where you have to go, you’re not thinking about how much you’ve achieved to get to where you are. So I figured it’d be a good way to mark that, too. So like, now we’re in July. And I have this, it’s very colorful of all these days of things that I feel like that done successfully.
Kenya Robinson 56:49
And that has been so helpful, even on the bad days to be able to look and say, Hey, you did some things well. And I’m i Yeah, I’m gonna have tears, I’m not gonna have to say the calendar has been extremely motivational and inspirational. My son walked in the other day, he’s like, wow, I think you’re the only person who can say you’ve known, you know, what you’ve done every day of this year, because it’s writing on the calendar.
Bill Gasiamis 57:23
It’s a visual journal, by the sound of it.
Kenya Robinson 57:27
It’s a visual journal, I love that, I think I might title it now, above at the very top that you can have.
Bill Gasiamis 57:37
Because I know, see, one of my big struggles with reading was that books are black and white, and bland, and there’s no pictures in them. And I don’t know how they take the pictures out of books, like even my book, I’ve written it and it hasn’t got pictures, but I don’t understand how we were taught to read, to read and see the picture in colors. So that we could have two visual representations of what that thing that we’re learning is about.
Bill Gasiamis 58:10
And then you get to a book as an adult, and it’s part of my friendship boring as batshit. It’s a real struggle, you know, to go into a book and not have because I’m a, I know that when people say I’m a visual learner, you’re not really a visual learner. But my preference is to visualize something to see it, then to read about it. And then to connect the two and to deeply embed that into my memory.
Bill Gasiamis 58:37
It’s much easier than to embed it when I’m just listening to it or just reading bland, black and white writing, text. So isn’t it interesting how we train kids to visualize these things to read and to connect the two and then we take that away from them. And I’ve never been good at journaling anything, I don’t journal or do anything like that. And I had to have people remind me of things.
Bill Gasiamis 59:06
But you record a video of yourself. And you watch that back. That’s that same thing. It’s the visualizing and seeing with your eyes, the whole picture, not just reading an in somebody’s interpretation of a doctor’s or my wife’s or my nurses or whoever it’s actually seeing, and I had a lot of I had a lot of times when I was at rehab trying to learn how to run and not for the sake of a marathon.
Bill Gasiamis 59:38
But just for the sake of because we went to outpatient rehab, and they said to me, what are some of your goals and I said, Look, I’d love to be able to run across the road just to get to safety if there’s a car coming or something. And I said okay, and he said Why haven’t you done it yet? And I was like, because I feel like when I run I run in a really bad form like a chicken and that would not be so I’ve to run across the road with you know, so he said, Well, why don’t I just record you running and you can see how you’re running.
Bill Gasiamis 1:00:09
And it was such a myth that I had created in my head because the feeling of my left side was so foreign to me. Although the form was very good, it was a ideal wasn’t perfect, but it was very good early on. I couldn’t, I couldn’t I couldn’t comprehend what my leg was telling me. So I had to see it. So that now I know, I’ve got a new language that my leg is providing for the same thing that I used to have, before that I was doing correct. And only visualizing and seeing was I convinced that I’m, in fact, them running in a good form.
Kenya Robinson 1:00:47
I love people who can run, like, I get that I yeah, I fully get that I was able to run in the first year, I have difficulty running now. So that’ll be something I know, right? You gotta, it’s the thing of you gotta keep at whatever you’re working at. And when you don’t work at it, you lose it. Running is actually a little bit of a fear of mine. And that’s why I’m going to attack that next.
Kenya Robinson 1:01:19
I don’t want to be afraid of anything. But I do have major concerns that I’ll be somewhere and we’ll need to get out quickly, and walk up and not be able to move. I don’t know if and when that day is coming. But I know that I want to do something to get prepared for if I need to move in a hurry is right now on the running, I’d love to be able to run.
Bill Gasiamis 1:01:50
There’s some crazy stroke survivors who might have foot drop, or they might have spasticity or something like that, and then they sign up for a damn marathon. And then somehow they get to train and they have this goal of completing a marathon, it might be a half marathon at the beginning of whatever. But I’ve interviewed some stroke survivors who just have overcome some really ridiculous obstacles to just run.
Bill Gasiamis 1:02:16
And to make it as difficult as it is for them to run with those conditions to still get to the other side of that marathon. You know, there’s a guy who follows me and I follow on Instagram, and, and A and T. Brian fitness. And he, he has foot drop and a limp or something like that. And his physical. Like, he trains people like he runs and does all that kind of stuff.
Bill Gasiamis 1:02:45
And he’s doing marathons and all this weird stuff. And then very early on in the I say weird because I just even when I was perfectly able to Oh would never run a marathon. Just I don’t see the point. But that’s just me, right. But maybe at the beginning of the podcast series, like very early on thinking, maybe back down to like, episode, where is it? Let me see if I can find it.
Bill Gasiamis 1:03:12
Episode 28. You know, Donna Campisi, she goes for. She’s had a stroke when she was a child. And in her 40s decided that she was going to run a marathon and she has foot drop and all that kind of stuff. And she talks about how she struggled and struggled and somehow got some training and everything and they completed 40 kilometers, it took forever, but they completed it.
Young Person Stroke Survivor: Running After The StrokeBill Gasiamis 1:03:36
And I’m gonna just what I’m trying to say is like, it’s possible. And whenever you get your head around that, and whenever you got the time for it, you know, just put yourself in that space of okay, let’s do the visual to your visual calendar. I ran one meter. I ran five meters today and I ran 10 meters and might get it better.
Kenya Robinson 1:04:05
I didn’t even enjoy running before the stroke. I know. I admire people who are like, Yeah, I run it releases stress, like no, my legs get to burn and no, thank you. But I feel like you’re challenging me. So maybe.
Bill Gasiamis 1:04:21
I am.
Kenya Robinson 1:04:22
Okay.
Bill Gasiamis 1:04:24
It’s a gentle challenge, there’s no timeline on it. It’s a seed, just planted the seed. That’s all I’m doing.
Kenya Robinson 1:04:34
I like the seed. I may take you up on that moment, and I’ll let you know.
Bill Gasiamis 1:04:39
And then it’s like, Oh, my God, I didn’t know that I could possibly run. Look at me. I’m running now. Oh my God, I identified as a runner, you know? And that’s it, right? You identify something new and you add another thing to your toolbox. And you did it in spite of all of the difficulties.
Kenya Robinson 1:05:00
Totally, because right now walking feels like stepping on Legos every day. I can’t imagine.
Bill Gasiamis 1:05:06
Thank you for describing it like that because that’s how it feels for me the left side. It’s like walking on Legos. Yes that’s such a great description. I go to the beach with my running shoes on. I never go into the water without shoes. Yeah, so you know, you’ve got a pair that always kind of needs to be thrown out, but you love them, you can’t throw them out. Because they got holes on it. Well, I keep them for the beach.
Kenya Robinson 1:05:38
Shoes are weird because my foot is still changing. So like there could be a pair last month that I absolutely could not work because they were painful. But didn’t they’ll be the most comfortable shoes ever. And then when they get uncomfortable, I’m like, okay, the foots changing again. So I’m I’m kind of playing now with some research regarding circulate Circulus circulation, sorry, circulation on the affected side.
Kenya Robinson 1:06:07
And how that relates to the Lego filling in the foot. Because I definitely have to drop, I work really hard at trying to get that exercise up. There’s a repetitive exercise that I do every single day, multiple times during the day doesn’t change the feeling, but it changes how far the toes come off the ground in that role through the foot because through the ball of my foot. I can’t fill.
Kenya Robinson 1:06:37
And then the there’s trickiness, because there’s no depth perception, especially with dancing, because I’m like, I don’t know how far I can actually go because it can’t feel it. And so there’s a little bit of play in the brain. But yeah, that Lego filling was crazy. But the research so far that I’ve been doing with circulation, and and getting the blood to really kind of pomp on the affected side has had some great benefits in the Blitz. So trying to see who I can work with to record this and share it and hopefully have it be helpful for having people who have Lego sensation, that’s what I call it.
Bill Gasiamis 1:07:25
That’s, I’m gonna start using that because I struggled to explain it to people, you know, I say, you know, if, if I stepped on a pebble with my right foot, I just know that there’s a pebble there. But if I step on the pebble with my left foot, it feels like there’s like a boulder there. And it’s just digging into every part of my foot.
Bill Gasiamis 1:07:43
And it’s really painful and uncomfortable. And it could make me trip over and it’s literally a pebble and it could be very small in size. But it could unsettle me and make me lose balance and fall over. Especially when I’m at the beach and the waves come through, right and at the same time you step on something that makes it feel like it’s sharp.
Kenya Robinson 1:08:07
It changes how you perceive things with walking, which is something that everybody has the right to, but it’s very different. And especially with the beach, got the waves rolling through, you got the feeling of the sand, but that grainy filling under the affected foot becomes a different story than it does to what we’re accustomed to.
Bill Gasiamis 1:08:35
A million pins and needles being pushed into the foot. I prefer now to use boots, slip on boots. So most of the time, if I can, I’ll just wear slip on boots because they kind of wrap the heel up and kind of protect it and keep it nice and warm and comfortable and safe. And then the shoe laces don’t dig into the top of my foot. And they just, you know, it’s just it’s a more comforting.
Kenya Robinson 1:09:10
People are like, why do you have boots on during the summer? I’m like, you have no idea, they’re comfortable.
Bill Gasiamis 1:09:17
And in winter, I could do the Michael Jackson and wear one glove on my left hand only. Just because it gets cold. Really, really cold on my left side.
Bill Gasiamis 1:09:28
Does cold lock you up?
Bill Gasiamis 1:09:30
It kind of makes me less sort of fluid, fluent, or free or whatever. Nobody would know but it feels stranger. It tenses the muscles and all that kind of stuff. And it burns the cold burns. And it becomes just like excruciating. And then it feels like the bones in my left hand. It feels like they’re frozen. You know, frozen came out of the refrigerator. They’re there, and they’re just solid.
Bill Gasiamis 1:10:01
So it’s that cold, and I can’t warm it up, I’ll get one glove and I’ll wear one glove. And I’ll try and just protect it a little more. Yeah, I like that. Yeah. And you know, you could you could be dazzled, you could put jewels on it and whatever. And you could make it like a proper Michael Jackson hand. And our generation would get it, at least the young ones would think what we eat, but we’d get it’s okay.
Kenya Robinson 1:10:36
To be special, yes, we do.
Bill Gasiamis 1:10:38
We went on a bit of a tangent, but I was asking you about your kids in the family, and how they manage all of your illness in your hospital, stay out of the kid, kids cope with all of that what was going on for them.
Kenya Robinson 1:10:57
My kids are very supportive, extremely supportive. Anything that I brought home to try and do, they engaged me. I know, when I first got home after rehab, I didn’t want to roll through the house in the wheelchair. So I scooted from room to room.
Kenya Robinson 1:11:21
And I would help with chores. So they would do laundry, and we’d sit on the floor, and I had attempt to fold it. When it was time to do dinner, they got down to the lower areas and would pull out what I needed. And then on one foot, I would try and put dinner together. And they would help. When it came to practicing walking, we had a long hallway.
Kenya Robinson 1:11:48
And so I would try and walk in, they would clap and cheer me on those days were really funny because that walk list. Walking, when you have to learn to walk again, it’s it’s comedy. But just extremely, extremely supportive. It got to a point that as soon as I felt like they were in a comfortable space, I know that I begin to kind of isolate and hide, just wanting them not to see.
Kenya Robinson 1:12:26
But just to feel like they had the sense that everything was okay. Not the right way to handle things. But when you’re in it, you don’t know, because you’re trying to cope, and you’re trying to make sure that that the people around you don’t have the fear from your trauma.
Kenya Robinson 1:12:47
My kids have since talked about that time. And I’m really grateful to have that information. Because I don’t know what it’s like to have been in their shoes. I know what it’s like to have been in my shoes. But I think that there has to be a conversation between both sides to have effective communication so that everybody is okay.
Bill Gasiamis 1:13:14
And you thought that you’re going to hide your condition from them. There’s no way you can hide it from anybody let alone your kids who know you intimately.
Kenya Robinson 1:13:25
Very much so in my mind, I thought if I could build good concepts of what was going on, and then suffer behind a closed door. Everything would be fine, because nobody went no vomiting, pain or mumps or even that part i If I could go back and do something differently, I would go back into that part. Because it becomes, the more that that’s practice, the more that that feels comfortable. So even now, in year five, I have to resist wanting to isolate, even though it feels very comfortable to be in that spot. It’s not a good thing for anyone.
Bill Gasiamis 1:14:12
I can relate to that. You’re also setting a bad example of how one should go about recovery, you know, teaching them that if they go through something later on in their life, that they should not tell anybody about it or keep it to themselves and pretend that everything is okay. Which ultimately is not because then they’re not receiving the assistance, the help the emotional, the mental health, the physical health that they might need.
Bill Gasiamis 1:14:40
And now you’re actually setting an amazing example, you know, that the visual diary that you’ve got on the wall there, I mean, that is another beautiful thing that they get to see all the time that tells them that this is how you can track once progress going forward. So if you ever get stuck, whether it’s a physical project or a personal project, or it’s a book project and you want to know how far you’ve got here, here’s a way that you can do that. That’s a such an amazing tool, you know, for them to see you put in place so that you can track things.
Kenya Robinson 1:15:26
Thank you.
The Hardest Thing About Being A Young Person Stroke SurvivorBill Gasiamis 1:15:29
Tell me about what the hardest thing about stroke is for you.
Kenya Robinson 1:15:37
Okay, the first thing about stroke really from me was the pain of things coming. I call them when you’re frozen. Like for me, I felt frozen after my stroke. So when things would thaw it was most painful before it felt better. I can remember the first part to unthaw was my ribs. And when you have that weakened sensation, it’s almost like you can feel what your bones way.
Kenya Robinson 1:16:21
That’s how heavy it becomes. And when the ribs became alive, that was five and a half months of the worst pain of my life. Because you never know how long it’s gonna last, it just hurts. My back came alive. Eight and a half months of and I have a high tolerance for I really have a high tolerance for pain now, but I had a high tolerance for pain then.
Kenya Robinson 1:16:51
But I mean, we’re talking about liver like on a scale of one to 10 I’d be like 21 Like, I don’t know these, you can rate this. And I was doing that with no pain meds, just suffering through. But post stroke pain has been was the hardest thing for me. I was talking to a girlfriend who was told me about a pain clinic that she’d gone to. And as soon as we stopped talking, I called my doctor and I’m like, does this exist and she goes, Yes, and I’ll write yours now.
Kenya Robinson 1:17:26
And it was a 40 hour class, but you couldn’t get in the class until you were evaluated by their team, which included a physical therapist, a psychiatrist, and then a physical medicine doctor. So it was multiple appointments with them, because they want to make sure that you’re not trying to take your life that you’re in a healthy place to do this because you’re in pain, and it doesn’t turn off, you can’t get it to stop. And then after their evaluations, then you get to start the 40 hour course.
Kenya Robinson 1:18:03
So everybody in the room is having extreme pain. And at first I was like we’re all going to bite. I don’t know, I thought that we’re going to take on one another’s pain. But it really wasn’t that at all. They took us through looking at activities during the day, what we’re doing, how we’re doing it, how we’re communicating with people, like stressful when you come up against someone we don’t communicate well, your receptors go up in spike your pain, how to deal with that.
Kenya Robinson 1:18:38
And then different ways and forms of communicating so that you stay safe breathwork meditation I will always swear by that I had a person go Oh, you’re going to tell me I’m going to breathe my way to feeling better. Yes, it works. Especially when you take the time to learn how to do it. Sleep hygiene. Number one a benefit to helping pain so when you’re able to have four tools and resources of things that you can draw on to bring it down. Life changing
The Lessons From The Stroke From A Young Person Stroke SurvivorBill Gasiamis 1:19:25
What has stroke taught you?
Kenya Robinson 1:19:31
What has stroke me? It does not all have to be done today. No really stroke has taught me how to pace my life and actually enjoy life. I don’t know that I enjoy life before the stroke. There’s part of me that will tell you I didn’t enjoy life recovering from stroke. But putting different tools in order to really figure out how to manage this, and live with it and not see as a consequence, has really changed my perspective a lot.
Bill Gasiamis 1:20:28
What would you say to somebody who’s listening in and maybe they’re very early on in their journey? What advice might you offer?
Young Person Stroke Survivor: Grace After A StrokeKenya Robinson 1:20:43
The number one thing I think is you have to give yourself grace. It’s a new period, it’s a new time of learning who you are. And that disk, the self discovery in that process is extremely important. You’ll get a lot of information, whether you take that from health professionals, your family, I always say find your stroke family first, because we get it like nobody else gets it, like, find your stroke family, click on say, hi, if they don’t answer, don’t worry about it, move on to the next person, somebody will reach out to you to help you figure these things out. I think that’s, that’s huge.
Kenya Robinson 1:21:32
And then because all of our strokes are different, take the things that that bring you joy, take the things that you find that bring you happiness, and diet is extremely important. And rest is extremely important. And I think when you begin to incorporate those things in your life, and you find the repetitiveness of a beginning schedule of things that you do during the day, then you just work to improve upon that.
Kenya Robinson 1:22:04
Based on what you feel successful. And it’s good to stay in a positive place. It’s okay to have bad days. So Kate cry, you become, I think stroke makes every makes you hyper aware of your feelings. I cry way more than I ever cried, and I hate that. But I find if I get it out, then I feel incredibly I feel so much better afterwards. So there’ll be some terrible days. You got to scream and yell just do it.
Kenya Robinson 1:22:38
Folks around you will get used to it. You do the things that make you better but most of all, you’ve got to give yourself grace. It’s not easy. And it’s it’s there’s it’s hard. It just is it’s hard but it gets better. It gets better and celebrate the small successes. No matter how small you woke up in the morning, celebrate it.
Kenya Robinson 1:23:00
You went to bed on time, the night before celebrate it, your favorite TV shows coming out celebrating. We’re celebrating all ever celebrate everything because celebration feels good. It feels good in the soul. So do things that make you feel good in your soul. And if you don’t if you wonder what that is call me we’ll talk about it we’ll find good things in your soul.
Bill Gasiamis 1:23:23
And, on that note, thank you so much for joining me on the podcast. I really appreciate it.
Kenya Robinson 1:23:27
Thank you, Bill. I appreciate talking to you it’s been a great conversation. Thank you.
Bill Gasiamis 1:23:33
Yeah, had a lot of fun too. Thanks. Well, that’s it for another episode of the podcast. Remember, if you’re interested in my book about stroke recovery, you can grab your copy on Amazon by typing my name Bill Gasiamis into the search bar, or by heading over to recoveryafterstroke.com/book.
Bill Gasiamis 1:23:51
If you want to know more about my amazing guests visit recoveryafterstroke.com/episodes and find their social media links and download a full transcript of that entire interview. A huge thank you to everyone who has left a review it means the world to me your feedback is crucial for the podcast success, helping others find this valuable content and hopefully making their stroke recovery journey a little bit easier.
Bill Gasiamis 1:24:19
If you haven’t left a review, please consider giving a five-star rating and sharing what the show means to you on iTunes and Spotify. For those watching on YouTube, remember to leave a comment below, like the episode and subscribe to the show on the platform of your choice to get notifications of future episodes. And if you are a stroke survivor with a story to share and now is the perfect time to join me on the show.
Bill Gasiamis 1:24:45
The interviews are unscripted and require no preparation. Just be yourself and share your experience to help others in similar situations. If you have a commercial product that supports stroke survivors in their recovery, you can join me on a sponsored episode of the show Simply visit recoveryafterstroke.com/contact, fill out the form with your category and I’ll get back to you with details on how we can connect via Zoom. Thanks once again for being here and listening Your support means everything to me. See you on the next episode
Intro 1:25:22
importantly, we present many podcast designed to give you an insight and understanding into the experiences of other individuals. The opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed all content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis.
Intro 1:25:52
The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.
Intro 1:26:16
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Intro 1:26:43
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The post Young Stroke Survivor’s Inspiring Recovery Story – Kenya Robinson appeared first on Recovery After Stroke.
Watch young stroke survivor Neetu Mehra’s inspiring journey from ischemic stroke at 44 to resilience and recovery. Click to hear her powerful story!
Highlights:
01:27 Introduction
02:41 The Beginning Of A Young Stroke Survivor’s Journey
14:31 Young Stroke Survivor’s Medical Journey And Impact On Daily Life
24:23 Stroke Recovery Timelines
32:20 Struggling With Meditations And Post-Stroke Deficits
45:01 Mental And Emotional Recovery
50:46 Finding Purpose After A Stroke
59:38 The Hardest Thing About Stroke
1:01:27 The Lessons From The Stroke
1:05:57 Advice From A Stroke Survivor To Another
Transcript:
Bill Gasiamis 0:00
Hey everyone. Before we dive into today’s episode, I have something truly important to share. In Episode 305, I had the pleasure of interviewing Catherine Randabel, the brilliant mind behind HeadBed. This product is revolutionizing hair salons especially for young stroke survivors.
Bill Gasiamis 0:18
Imagine going to the salon and worrying about the risk of another stroke because of neck strain during a simple hair wash. It’s a fear that many stroke survivors live with. And HeadBed was created to address this very concerned offering peace of mind and safety.
Bill Gasiamis 0:37
With proper neck and head support, you can relax knowing your health is being looked after reducing the risk of arterial damage and the anxiety that comes with it. Now I’m passionate about stroke prevention and safety, which is why I’m excited to support HeadBed. Catherine explained how it’s designed prevents dangerous neck hyperextension a common issue that can increase stroke risk.
Bill Gasiamis 1:02
HeadBed means that you can finally enjoy a trip to the salon without fear. If you’re a stroke survivor or know someone who is HeadBed is a game changer. Don’t let the fear of neck strain and stroke keep you from enjoying a salon visit. Be sure to check out episode 305 for my full interview with Catherine and discover how this product can provide the reassurance you need.
Introduction – Young Stroke Survivor Neetu MehraBill Gasiamis 1:27
For our listeners in the United States. Visit headbedusa.com to get yours today and feel safe during your cell on visits. Welcome to Episode 314 of the recovery after stroke podcast today, we have an inspiring story of resilience and determination as we chat with Neetu Mehra.
Bill Gasiamis 1:48
At the age of 44 need to experience an ischemic stroke despite leading a healthy lifestyle. Her journey began with a sudden and unexpected symptom, leading to a 12 hour ordeal before receiving medical attention. Join us as Anita shares her incredible recovery story from dealing with paralysis and multiple blood clots to making significant progress in her physiotherapy and occupational therapy.
Bill Gasiamis 2:14
This episode is a testament to the power of perseverance, the importance of support from loved ones and the never ending hope for recovery. Let’s dive into Neetu’s story and learn how she navigates the challenges and triumphs of stroke recovery. Neetu Mehra welcome to the podcast.
Neetu Mehra 2:33
Hi, Bill. Thank you.
Bill Gasiamis 2:35
Thank you for being here. Tell me a little bit about what happened to you.
The Beginning Of A Young Stroke Survivor’s JourneyNeetu Mehra 2:41
So I had an ischemic stroke. I’m 44 years old, otherwise pretty healthy and fit. Like I took care of myself workout, practice yoga, go for walks. I had a pretty healthy lifestyle in terms of like eating habits and stuff. I have no metabolic risk factors. And I hadn’t machine next stroke.
Bill Gasiamis 3:05
That was just a few months ago.
Neetu Mehra 3:07
This was in February. Yeah, five months ago.
Bill Gasiamis 3:11
On the day of the stroke, were there any signs or symptoms anything before the stroke that kind of gave you some sort of an idea that things were not right, or there was a couple of issues happening?
Neetu Mehra 3:22
Yeah, so the night before this joke, I was getting my things ready for like clothes ready for work the next day. And I noticed that I was seeing stars from my left eye. Only from my left eye. I saw like a cloud of stars for me. And I thought that was a bit odd. I’ve had visual issues in the past, but nothing quite like that. And I just thought, Okay, if it persists in the morning, then I’ll go to emergency. There’s like an eye clinic. So I thought it was an eye issue maybe. And then I woke up the next morning, the day of my stroke and I am mean who knows maybe I was having a stroke in the middle of the night.
Neetu Mehra 4:06
And then when I woke up the next day, I was like, you know, open my blinds as usual. I got out of the bed, went to get ready. To me like it was nothing, everything was fine. I could see I wasn’t seeing the stars that I saw from the night before. So I thought okay, that’s fine. No need to address whatever issue was happening.
Neetu Mehra 4:28
And then I went to get ready. And as I was getting ready. I was supposed to be at a work conference for 9:30 in the morning. And my manager called me saying hey, we started an hour ago, where are you? And I thought there’s no way it’s not even 8am yet. Because in my mind, I had no concept of time. Like I thought I was going to be there on time. And and I was like getting ready and then after I spoke back to her I said okay, I didn’t realized the time.
Neetu Mehra 5:01
And I said something and I realized that I slurred my words. So at that point, I thought, okay, that’s really weird. I sound like a drunk or something. And it’s first thing in the morning, sounded really odd. When we hung up the phone, she texted me saying it was hard to understand what I was saying. So I texted her back with a very well put together a text saying, my stomach hurts, my head hurts, but I’m coming.
Neetu Mehra 5:23
Like my intention was to drive over. And then I actually was able to take a shower fine. And then I got out of the shower and put it in my contact lenses. My right one went in fine. My loved one, it took me like three attempts. And it was really hard to open the packet as well.
Neetu Mehra 5:40
And I realized that something was wrong, like my fingers seemed a little off. So on the third attempt, I think I got it in. I also felt extremely tired. I don’t know why, like extreme fatigue, like I just had to lie down and I have low blood pressure. So I thought maybe I just need to like lie down. But I didn’t want to lie down in bed because I was determined to get to the work conference.
Neetu Mehra 6:04
So I thought, Okay, let me just lie down on the floor. I live in a condo by myself. So I, I went and I lay down on the hardwood floor after getting out the shower. I hadn’t put my clothes on yet. And I left my phone in the bathroom. So I actually left it, I completely forgot it there. And I was laying on the floor for quite a long time. When I realized a lot of time was passing, I thought okay, it’s I should probably try to try getting myself up, get ready and go.
Neetu Mehra 6:35
And I thought, okay, if only I can just turn over onto my hands and knees. I know I can push myself up because I’m physically strong enough. I workout and stuff. So I’m like, I know my strength and my physical abilities. And I was laying there and I thought, Okay, this is so bizarre, how come I can’t and I tried to reach up with my arm, my right my good arm. And I wasn’t able to get myself up.
Neetu Mehra 6:58
And by that time, lots of time had passed. And at one point I realized that I can’t do this on my own, I need help getting up. So it just crossed my mind like who do I call? And how do I call them because my phone is not with me. And then hours had passed in. During that time my manager had called me texted me and I never responded to her because my phone wasn’t near me.
Neetu Mehra 7:19
So she had reached out to my emergency contact, which was my mom. And then she was not able to connect with her it went to voicemail. So then she decided not to leave a message in case my parents were traveling. And then hours had passed and the day had gone by and I realized that it was getting dark out. So I was like, okay, lots of time has passed. Now. I just wanted to stay awake and keep myself awake.
Neetu Mehra 7:47
So mentally, I’m just thinking like, what’s going on? In my mind that crossed my mind at one point, I’m like, maybe it’s a stroke because I slurred my words. But I didn’t quite remember all the other signs of the stroke. I wasn’t really as aware of it at the time. Now I know, at the time had no idea. So then, the evening came and HR called my mom saying that I didn’t show up to work.
Neetu Mehra 8:12
So obviously my mom was panicking. So she’s calling my friends. They’re calling me and obviously I’m not responding. And then they called the condo building and the security checked in they saw that my car was in the parking spot. And they knocked on my door and they’re not allowed to answer the they’re not allowed to go into the side the door without paramedics or cops with them.
Neetu Mehra 8:35
And I heard them knocking but I was lying down in my bedroom, which was like the exact opposite corner so it’s too far away from them from the door so they wouldn’t be able to hear me my voice is quiet normally and it was even more quiet that day. So then, you know my parents, I think my mom knew something was off. So they got into the car. My parents came to the condo and they called 911. So the paramedics came, and the condo security opens the door for when the paramedics came. So I was lying on the floor, and thankfully, I was still cautious and talking over 12 hours had passed by this time.
Bill Gasiamis 9:17
Without any clothes?
Bill Gasiamis 9:20
Without any clothes on the hardwood floor. Yeah, for 12 hours and mentally I was just trying to stay awake. I didn’t. I knew something was off. I didn’t know what it was.
Bill Gasiamis 9:32
Were you aware that you were not clothed? Okay, you’re aware of that but didn’t really bother you didn’t seem to be an issue that there was no clothes on. You were just trying to stay awake so that you could remain conscious. Were you afraid that if you fell asleep you wouldn’t wake up? Was there something like that happening at all?
Neetu Mehra 9:55
I didn’t quite get to that thought but now that I think about it, I definitely I think that I don’t know that I would have made it if I would have fallen asleep. Just mentally, I thought, Okay, I have to get to this work thing. So I need to stay awake, then I need to get up.
Bill Gasiamis 10:11
Yeah, get used to the hospital. Well, before I go there, I can relate to what you’re saying about time. So when I came out of hospital after my second bleed, time, sort of stopped to exist as we know it, there was no actual four hours, or it took three hours. But I do remember I tried to type an email once, thinking that I was doing a really great job and being at my desk for the entire day.
Bill Gasiamis 10:40
And, and having only managed to put out a few lines. And I think not even send that email across. I didn’t even know I don’t even know if I managed to get it out. But there was no concept of hours or minutes or anything like that. It was just nothing. A long time, there was just a long stretches of time.
Bill Gasiamis 11:05
And I couldn’t grasp how long. And I knew from what other people were doing around me that it was time to go home, for example, because everybody else was going home. That was kind of the aftermath of the second blade when it was impacting a whole bunch of other things for me, so I kind of understand what your state was like. So they’ve come in, and they’ve assist you immediately and taking you to hospital. What happened after that?
Neetu Mehra 11:41
So they came in, the paramedic brought a towel for my bathroom, and then helped me put some clothes on. And then they were deciding which hospitals to take me to, and they took me to the stroke Hospital in Toronto. And then when I got there, it was a little bit foggy, like, their ambulance ride there was a little bit foggy.
Neetu Mehra 12:03
But when I got there, I was coherent again, and someone came in and was like, we’re gonna do this procedure on you, you had a stroke, you have some blood clots in your head, she asked me to sign a piece of paper to do a thrombectomy, where they go in through like your artery to suck up the blood clot. And so I asked him the success rate, I was like, what is the success rate? And they said, 85%.
Neetu Mehra 12:27
So I was coherent enough to ask intelligent questions, which was good. And then I signed it, and they did their procedure. And I think they only have to partially sedated me, because I could hear what they were saying. And I heard them say like, they went up in there, and they said, oh, there’s second clot. So there was two blood clots in my head. And after that, I just felt like a massive, like I already had a bad headache, but it was a worse headache. So the one of the blood clots burst, then it was a bleed.
Bill Gasiamis 13:02
So the blood vessel was then bleeding?
Neetu Mehra 13:06
Yes, the blood clot was bleeding. So then I had a massive bleed in my head. And then I had an arterial dissection as well. So the artery dissected.
Bill Gasiamis 13:20
You got the whole package, my gosh.
Intro 13:27
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, doctors will explain things. But obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 13:51
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition, and they’ll help you take a more active role in your recovery. Head to the website now recoveryafterstroke.com and download the guide. It’s free.
Young Stroke Survivor’s Medical Journey And Impact On Daily LifeBill Gasiamis 14:31
You’re coherent enough to hear all of that stuff they did they say there’s a bleed or did they give you the type of information or was that kept?
Neetu Mehra 14:41
Not at the moment like I didn’t hear that part. I just felt a massive headache like the pain and I was like for days I was in the intensive care unit at the hospital for like nine days. And I was in so much pain and I was getting bags of ice for my head. It was just so painful.
Bill Gasiamis 15:04
And then what was recovery like? How long did you stay in hospital?
Neetu Mehra 15:08
So I was in the intensive care for about just over a week. Now I went to acute care for three weeks to a different hospital. And that’s where they did tons of tests and scans and everything. They’re checking my body inside and out, because I have no risk factors made no sense at all.
Bill Gasiamis 15:28
And they were trying to work out the cause of clots. Yes,
Neetu Mehra 15:33
they have found more clots in my body. They found a clot in my kidney and two and my lungs. They’re trying to figure out what came first. And second. They think perhaps it could have been like a clot that broke into a cluster of clots and spread through my body and went to my head.
Bill Gasiamis 15:52
Having been reunited or formed elsewhere first not necessarily created or formed in your head.
Neetu Mehra 16:00
Yep. And they think the two clots in my lungs could have been from laying in bed for a week after the initial clots. So I’ve been tested for clotting disorders and everything, but I’ve tested negative for everything. Well, yeah, so they still don’t know the source of the cause. Yeah, they kept me and I felt like a science experiment. They just kept me in there and I kept going. You MRIs and scans and and other tests.
Bill Gasiamis 16:32
Tell me about your life before stroke. What kind of work did you do? How did you occupy your time?
Neetu Mehra 16:39
I work in marketing for a bank. But I think I was doing a pretty good job of managing like work life balance, like work projects, and I wasn’t overly stressed. Like I think life was pretty good before this. Yeah, so I had work life balance. I was very focused on like, my health, and exercise and things like that. So I was working out all the time, practicing yoga, going for walks outside, eating healthy nonsmoker. I had a good balance of like, spending time with family and friends and life was pretty good. I traveled a lot to
Bill Gasiamis 17:19
work. No, just for fun. For fun. Okay, for fun. Yeah. Okay. So you’re pretty active. Everything was a ok. Yep. Yeah. Yeah, now, and now things are quite different. So how, how do you go about your day? Now? What level of activity Are you back to, if any.
Neetu Mehra 17:43
So basically, I have left side paralysis. So what I impacted. So while I was in the hospital, I was basically in bed the whole time. I went, I started rehabilitation, I went to rehab hospital for two months after that for about like, almost eight weeks. So then I spent like a total of three months in like hospitals and care. And the rehab hospital was good, because it got me moving.
Neetu Mehra 18:08
And I, you know, getting up and doing physiotherapy and occupational therapy. And I still go there for occupy outpatient therapy, which is great. So now I’m able to walk with a cane, which is great. My left arm and left hand is not functional at all. I can move it a little bit, but not too much. So I’m still working hard every day. I’m doing exercises at home.
Neetu Mehra 18:34
So I wasn’t able to go back to my condo and live there because I need help with a lot of things. So I, my parents and my brothers worked hard to have some renovations done to the house so I could move in with my parents again. They’re elderly too. So it’s like, I thought I would be the one coming to take care of them. But they’re taking care of me now.
Bill Gasiamis 18:55
Yeah. How old are you parents?
Neetu Mehra 18:58
They’re in their 70s 75 and 78.
Bill Gasiamis 19:04
Are they feeling well?
Neetu Mehra 19:07
They’re feeling okay. I mean, they’re tired all the time. Got a lot going on.
Bill Gasiamis 19:15
My parents are similar age, my mom’s 78 And my dad’s 82. And I can’t imagine them being able to cope with firstly, their child is unwell. That was a big issue, and then they’re just not as fit and active as they used to be. So it’s always going to be difficult.
Bill Gasiamis 19:45
And they more than anything, want you to get better. So they’re gonna put all their effort in as much as they possibly can to get you better. And they’re probably not even thinking about it by him. Imagine you are thinking about it you are, it does cross your mind that you’re in the situation that you’re in and that they have to do what they’re doing. Is it something that you have to grapple with?
Neetu Mehra 20:13
Yeah, I mean, I think about it must be so hard for them. In the fact that they’re older, they’re not in the best shape either. It’s definitely exhausting.
Bill Gasiamis 20:25
Yeah. How old were you at the time?
Neetu Mehra 20:30
Of the stroke? 44.
Bill Gasiamis 20:33
Yeah, that’s right. And you’d been independent for many, many years. Probably moved out of home much younger.
Neetu Mehra 20:43
Yeah, while ago, that’s a big life change coming back. And just being dependent on people now. Even in terms of like, you can’t just step out and go for a walk or step out and go meet my friends. Like, everything’s very planned. And people come to me now it’s very different. Like, I can’t drive my driver’s license is suspended as well.
Bill Gasiamis 21:11
Is there some kind of hope that you’ll be getting a driver’s license back at some stage? Are you thinking of going after that particular goal?
Neetu Mehra 21:21
That is definitely a goal of mine. Because my right side is fine. They have like adapt. You can add an accessory to make your vehicle adaptable. And thankfully, my memories completely fine. And my vision, I haven’t had a vision test, but it seems okay. My profiles are okay.
Bill Gasiamis 21:45
And what about your work? Have you managed to get back to work? Are you doing any work at the moment? Not
Neetu Mehra 21:52
yet? No. So I’m on leave from work right now. I definitely miss it. Like I miss the interactions and like, using my brain and doing work and stuff. But um, yeah, that’ll be I think a little bit of time. I just get tired. When I have like long days. It’s exhausting. To take some. Yeah, fatigue. Yeah, I’m definitely focused on physiotherapy and occupational therapy. So I go there a few times a week, I have poor therapy as well, which is great.
Bill Gasiamis 22:28
And what have you noticed, with regards to your condition, so at the beginning, therapy would have been really hard to do. And now it’s probably still hard. But I imagine you made some gains, some, you’ve developed some additional strength and some, tell me a little bit about what’s different between when you started and where you are now.
Neetu Mehra 22:47
I mean, the fact that I can walk with a cane is fantastic. In the house, I used to have a wheelchair all the time, and even be wheeled to the bathroom, things like that. Now, I just walked through on my own so I can walk independently from room to room, which is great. I’ve even climbed a flight of stairs, which is fantastic. That was that’s brand new for me.
Neetu Mehra 23:13
So I climb up sideways and they go down forwards because of the railing is only on the left side when I go up the stairs. And then they’ve retrofitted the house to add a chairlift. So the chairlift goes to the basement. So I’ve been sleeping in the basement. So that’s good. And then I’ve Yeah, some even at physiotherapy I’ve been walking. I’ve been practicing walking without a cane once in a while. So that’s going to that’s a goal of mine, for sure. To walk properly again without a cane.
Bill Gasiamis 23:51
And it hasn’t been long time. It’s very early on.
Neetu Mehra 23:55
Yeah. Five months.
Bill Gasiamis 23:59
Do you have a sense of how long you expect this recovery to take? Where are you at with your mindset? What are you thinking about recovery? And what is your day to day life telling you about what your thoughts are?
Young Stroke Survivor’s Recovery TimelinesNeetu Mehra 24:23
So I’m not sure whenever I ask a doctor or a physiotherapist. They don’t want to answer that question. And they won’t guarantee that I’ll be recovered fully. So I know that I’m very determined. So I’m working hard every single day. Not really sure on the timelines.
Bill Gasiamis 24:42
That’s good. I’d rather you didn’t have a timeline because a lot of what happens for a lot of stroke survivors they have a timeline that they set perhaps in their head or doctor said you’ll be up on your feet in six months or 12 months or something like that. And then they don’t meet the timeline, and then they get really out on themselves, which is not a reflection on them, it’s just a reflection on the condition that they are recovering from. So I like to tell people to have goals.
Bill Gasiamis 25:10
My goal is to drive again, my goal is to do all these things again, but not to put a timeline on it so that you’re still always forever working towards the goal. But you’re not limiting yourself. And then potentially getting to the point where you feel a little bit down on yourself because you haven’t met your unrealistic timeline. And that’s the thing about it. Most timelines or deadlines would be unrealistic, because your stroke is different from everybody else’s, you’re different from everybody else.
Bill Gasiamis 25:41
So you can’t really say it’s not a broken bone, for example, that, you know, you break the bone, you put it in a cast, you’re out for six weeks. And then after that, the cast comes off and you rehabilitate that particular boat, that limb for a little bit, and then you’re back on board, it’s a little bit different. It’s slow and steady wins the race in this type of situation, it’s definitely going to take longer than five months. And you can see that in five months, you’ve made a lot of gains, and you’ll continue to do so.
Bill Gasiamis 26:17
So by 12 months, you’ll be a lot further along, perhaps not exactly. Driving yet, maybe not. But the training, and the effort that you’re putting in now is definitely going to pay dividends. But then, at the same time, you don’t want to overdo it, because you want to make sure that your fatigue is not debilitating to the extent that you can’t get up and get around and do the things that you want to do. And at the same time, sometimes you want to push yourself beyond the limit. So you can see, you know how far further you can go before you’re completely exhausted. And then just allow yourself the time to become to rest, rest as much as you possibly can.
Neetu Mehra 27:08
Yeah, that’s one thing. I think I didn’t have a concept of rest before my stroke. Just keep going live life. And it’s the physiotherapist that are like, okay, take a rest take a break. So I do that now when I’m doing my exercises, and that’ll take a little rest.
Bill Gasiamis 27:27
You want to give the brain some time to recover. Because your muscles and your and your limbs and your legs and all that kind of stuff can keep going and going and going. It’s your brain that has to recover. Now, whereas before, you didn’t ever gave any thought to physical exertion making your brain tired, you know, you’re never not once did you think about that. But that’s what it’s doing now.
Bill Gasiamis 27:56
So your body might want to keep going, but the brain needs time to recuperate and rest. Are you experiencing any other complications from the strokes other than your left side deficits? Oh, man, I know the fatigue is there. And you’re not working yet. But like any other medical complications.
Neetu Mehra 28:21
My smile is not back yet. I went to the speech therapist actually this week, and I’m starting speech therapy as well. So I can work on getting my smile back. She also noticed there’s like a missing some like tone in my voice, I noticed that my voice is a little quieter than before. And that some vocal cords I think are folded. They’re not. They’re not even. So she can notice that.
Neetu Mehra 28:48
So I’m working on that too. In terms of other health, like they’re checking my heart one more time because they don’t know the cause. And they their theory is each atrial fibrillation. But there’s nothing, there’s no data to prove that. But when I was in the hospital, I had my heart attack, check multiple times inside and out.
Neetu Mehra 29:08
And it was fine. Yeah. But I didn’t notice that before the stroke, when I would run on a treadmill. My heart would be really, really fast. So I noticed that there was something off about that. And even sometimes running up a flight of stairs would make my heartbeat really, really fast and it just wouldn’t stop. So maybe something to do with that.
Bill Gasiamis 29:31
Okay, and you made them aware of that particular thing that you had noticed. Yeah, okay. Well, that’s probably a good place to start. Thinking about it is this usually is a cause whether they come across the cause or find the cause it’s another it’s another thing but I would suggest that you keep going for these tests and you keep getting used as a medical experiment, so that eventually whether it’s a stick Can opinion a third opinion false.
Bill Gasiamis 30:01
And eventually you come to the point where perhaps somebody discovers what the cause is, even though it takes a long time, just do that. I know if there you’d be in a situation now where they’re giving you pretend preventative medication, so you’d be on blood thinners to make sure that another clot doesn’t occur. That’s a really awesome protocol, because that does actually make a massive difference to the blood and the way that it flows and the fact that it stops it from clotting.
Bill Gasiamis 30:33
So that’s a really good thing. And then you’ve got a lot of skills in keeping yourself well and healthy, because of all the stuff that you did before you became unwell. So what kind of things have you implemented now? Or is it just business as usual as far as your nutrition and your, the way you go about life?
Bill Gasiamis 30:57
Just a quick break, and we’ll be right back with the interview. Now, imagine a life where the impossible becomes possible where the challenges of stroke recovery transform into a story of triumph and growth. This is my story, and I’ve captured it all. In my new book, The Unexpected Way That A Stroke Became The Best Thing That Happened. I know firsthand, the emotional rollercoaster of stroke recovery, the fear, the uncertainty, the frustration, I’ve been there.
Bill Gasiamis 31:24
And through my journey, I discovered that a stroke while devastating could become a catalyst for profound personal growth and positive change. In this book, I share my deeply personal story and that of another nine stroke survivors, offering you a roadmap to not only navigate your recovery, but to thrive in ways you never thought possible. Are you ready to turn your challenges into opportunities to find strength in your struggles, the unexpected way that stroke became the best thing that happened is more than a book.
Bill Gasiamis 31:56
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Struggling With Meditations And Post-Stroke DeficitsNeetu Mehra 32:20
Nutrition I’m pretty health conscious I was before but I’m even more now. And even in terms of like, doing my exercises and physio every single day, I’m pretty diligent with that. And then also making sure I’m hydrated and I used to meditate a lot before. So I’m trying to keep that going as well. I find a little bit harder to focus on my meditations.
Bill Gasiamis 32:51
How’s that tell me why?
Neetu Mehra 32:54
Maybe because of it was the right side of my brain that was affected is the right, the right side MCA stroke. So that’s your creative, meditative side too. So I feel like before I used to be able to get into really deep meditation quite easily. Now it’s a little bit more difficult, more challenging. But I still keep out in practice.
Bill Gasiamis 33:18
That sounds like a really good exercise regime for your brain.
Neetu Mehra 33:24
I tried to sit outside in nature on the nice days, and I take in the greenery and thing is before like the stroke I used to like to go for walks outside. Now I’m not really doing that yet. Although sometimes I have like, friends or family take me for a stroll around the street in the wheelchair which is nice.
Bill Gasiamis 33:45
So with your walking. Is it safe walking, and when you’re walking around the house, do you feel safe?
Neetu Mehra 33:52
I do. Yeah, I feel safe. And then I walk laps in the house as well every day just to get that momentum.
Bill Gasiamis 34:04
Around the kitchen furniture, around the tables, and lounges.
Neetu Mehra 34:08
Kitchen, living room, and hallway area. Yeah.
Bill Gasiamis 34:13
Yeah. Sounds like next time somebody comes over to take you around the block with a wheelchair, maybe leave the Bucha behind or take it with you. And then do a few steps without the wheelchair and then have the wheelchair there as a backup just to get you back if you get really tired.
Neetu Mehra 34:30
Yeah that’s a good idea. I did that once. Yeah, that’s a good thing to start practicing again.
Bill Gasiamis 34:39
Have you spent much time out of the house and I’m talking about have you taken a wheelchair and got into one of those wheelchair friendly taxis and gone down to your local grocery shops or anything like that.
Neetu Mehra 34:57
Honestly, not too much. I haven’t gotten. I think I went to grocery store once or twice. But not by myself. I haven’t done anything on my own yet. I always have people with me, which is good.
Bill Gasiamis 35:13
Wwith people. What about other deficits? Do you experience any issues with light or sound? Or a lot of people or any of that stuff? Do you have any other types of deficits that impact your energy levels?
Neetu Mehra 35:33
I think a lot of people I went to like my first party a few weeks ago, it was outdoor get together. I was definitely very tired after and it was overwhelming seeing a lot of people at once. Before the stroke, I already had sensitivity to light. Yeah, I’ve always had sensitivity to light. Like I like sunlight, but I don’t like bright artificial lights.
Bill Gasiamis 36:02
The fluorescent kind which is like hospital lights.
Neetu Mehra 36:09
So I’ve been wanting to like often sit in the dark or sit with up lights off.
Bill Gasiamis 36:15
Was it causing you headaches? Was it causing you fatigue? What was causing?
Neetu Mehra 36:22
Like my eyes would tear up if it was too bright? My eyes it was felt sensitive. So the light? Yeah. Sometimes headaches, but not very often.
Bill Gasiamis 36:35
But the sun wasn’t an issue. You could go out and spend as much time out in the sun as much as you needed, but not endorsing it. Artificially.
Neetu Mehra 36:42
I had sunglasses on.
Bill Gasiamis 36:48
So I’m kind of like that now. Sunglasses in the sun, they go hand in hand, or very rarely take them off. When I’m at the beach, for example, I will make sure that I’m wearing sunglasses in the water. And I’ve done that for many years, even before stroke. And I spent some time after I first went back to work. Initially, my the work that I went and did was in an office.
Bill Gasiamis 37:14
And in that office, they had bright fluorescent lights above everybody’s head, basically, there was hundreds of them in that damn building, you know, I still walk in there with my sunglasses and keep my sunglasses on. And sometimes wear a hat. Because it was too bright above my head. And it would really impact my ability to work, especially with the monitor.
Bill Gasiamis 37:40
Two monitors, one on each side, it was very challenging. And I remember the light above my head went out, and they got the maintenance guy in to go around the office and change all the lights that were out. And thankfully, when I was at my desk, and he came to replace the light, I said to him, just leave it out because I prefer it without the light. So then there’s this whole bright, lit up office, but above my head is this the respite from this little dark spot. And it made a massive difference to the way that I felt.
Neetu Mehra 38:20
Yeah, I can relate to that for sure. Even before the stroke of my old office, there used to be bright lights. And I had a similar situation where the light went out. And I was like, don’t fix it. I was happy with it not being on.
Bill Gasiamis 38:35
Yeah. So how come it took so long to get speech therapy? Was it something that you guys just didn’t realize that you needed? Or how did it get to that point where it’s taken you five months to get there?
Neetu Mehra 38:55
It’s funny, I asked the same question. So I had a speech therapists come and do a swallow test when I was in the hospital. And I pass the smell test even like they wanted to put a feeding tube on me and I was like, No way. I love food too much. There’s no way I’m getting a feeding tube.
Bill Gasiamis 39:12
Was that early on when you were first admitted? When I was first admitted, yeah. They asked you for a feeding tube. They wanted to
Neetu Mehra 39:21
put a feeding tube on they said they’re gonna put a feeding tube and I said no, thank you. Wow. And then I was having thickened liquids and like, mashed potato type food for like, weeks, three weeks, four weeks. And then when I pass the swallow test, it’s solid foods. That was great. I was very excited. Just happy to be able to eat real food again.
Bill Gasiamis 39:50
So for safety purposes, they wanted to keep you not eating food in case you choked. Yep. Did you feel that Was any difficulty in swallowing back then? Was there any? Did you have any concerns about that? Were you taking more care?
Neetu Mehra 40:09
There was at the beginning. I just remember I wanted to just have like, a cup of tea without thickener in it. And that took a while to happen. Yeah, I was definitely taking more care. Like at the very early days, the first week I was being spoon fed liquids and the mushy food. Yeah.
Bill Gasiamis 40:34
Is it possible? And bad enough? They tend to do too much. Exactly.
Neetu Mehra 40:42
Yeah, hospital food was actually better than the food rehab. The rehab hospital food was terrible.
Bill Gasiamis 40:51
Yeah, I think they must do it on purpose in rehab, to get you out of the ketchup. Yeah.
Neetu Mehra 40:57
I kept telling him, You need to get a new chef.
Bill Gasiamis 41:01
Yeah, that’s one of the strange things about food is that it’s such makes such a difference on the health of person food. And it makes such a difference in how you’re you feel on a daily basis. And with people going through any medical condition. In our case, stroke. You want to have the best version, this quality food you could possibly have flavor. Going to I can kind of understand if they’re not awesome. One flavor, but you know, it really needs to be good food. And even if it’s not a lot of it, it needs to be good quality suspicious. Yeah. So that it can heal help people heal and overcome and recover.
Neetu Mehra 41:46
Yeah, I completely agree. Thankfully, I had lots of friends and family, bring some home cooked meals. So I was I was eating well, better than what they provided me with.
Bill Gasiamis 42:01
That’s such a blessing, isn’t it, I had the same thing. My parents would deliver food on the daily, make a food, bring it over in the morning. And then I would have for lunch instead of the the hospital food. And when they didn’t come with food it was a challenge to to eat that stuff because I was spoiled by them and good times. Tell me about your journey. So you’re five months out. Everything is different from what it was five months ago.
Bill Gasiamis 42:35
And you’re already on a podcast, talking about your situation. Now. That’s really cool. I think that the people who have great recovery outcomes, and what I mean by that is, is that they are mentally and emotionally doing really well. Some years down the road after stroke, even if their physical condition isn’t, we’ll call it 100%.
Bill Gasiamis 43:06
If it’s not exactly like it was before stroke, I feel like they have better outcomes, people that are active in the space of kind of seeking out people who are understand them who are like them. Tell me about your thinking around discovering things about stroke or learning about Shoko finding people that are like us that understand what you’re going through? What, What’s your thinking behind that?
Neetu Mehra 43:40
Yeah, I’ve joined some stroke groups. And I went to an in person meeting this week, actually, with a charity. So that was, that was pretty good. I’m trying to seek out people that have had similar strokes and just get advice. And have you even connected with somebody and in the UK, as well. So overseas for me, who had a similar stroke at a similar age. So it’s just nice to get advice and chat with people that are going through similar situations.
Neetu Mehra 44:10
Because I feel like my life just got taken away from me out of the blue all of a sudden. Like everything in my life has changed basically. It’s like, I’m glad I actually lived a good life before in terms of like, you know, I had a good childhood, I lived in my 20s and 30s. I traveled a lot I focus on my career I did a lot with my life and I just feel like now it’s like reintegrating into the world. As like a disabled person, it’s very different as an adult versus if you’ve grown up like that as a kid. So I find it challenging your amount of adjustment, a lot of adjustment. Also just what it could do for myself before versus now. Very, very different.
Young Stroke Survivor’s Mental And Emotional RecoveryBill Gasiamis 45:01
Yeah. And that adjustment is physical, but also, it’s a mental adjustment. It’s how you think about yourself and how you talk about yourself to yourself and how you comprehend all of the challenges that you’re facing and how you find the guts and determination and how you become resilient to tackle all of the challenges that strokes thrown your way. Because it’s not just one challenge. It’s not just one, you know, injured leg, it’s an injured body body. How is that for you? How do you navigate that part of your recovery, you know, the, thinking part of it, and the emotional part of it.
Neetu Mehra 45:54
The thinking part of it, I feel like I’m pretty rational and logical. So I think that part is okay, just like, reintegrating into society and doing things that you still enjoy doing that that part’s a bit hard. Especially like, I can’t go to a yoga studio anymore, and do that. Although I found like online adaptive yoga classes, which is great. I’m just trying to do some of the stuff I used to do. It’s funny that people that don’t know me think that my smile is fine. Yeah. Then I look at my old photos.
Bill Gasiamis 46:27
And you compare yourself? Yep. And you know, there’s a difference, but you probably also feel a difference in your face.
Neetu Mehra 46:34
Yeah, my face was very numb for a long time. Yeah, getting a little better.
Bill Gasiamis 46:43
I didn’t notice, until you told me that. There was an issue. I didn’t notice anything. I’m not sure if that’s a consolation. But it looks like it’s coming. Good. Like, what did you have the droop? On the on that left side?
Neetu Mehra 47:00
I did. Yeah, a lot of people that see me say I look a lot better than I did before.
Bill Gasiamis 47:08
Okay, so it’s improved in the last five months.
Neetu Mehra 47:11
Yeah I try to massage my face too.
Bill Gasiamis 47:17
A little bit of external stimulation to try and get blood flowing and good things happening. Yeah, I think you’re on a good path forward. Like, I think that all the things that you’re doing are definitely going to help in some way, shape or form. To what extent, well, that remains to be seen, but the fact that you’re putting so much time and effort into doing some major things like you know, making sure you do your physical exercises, and all that kind of stuff.
Bill Gasiamis 47:44
And then some minor things like massaging your face, all those things they add up in time, that make a massive difference. And a year and a half from now, you will have made a lot more gains than your then you currently have. But like I said, five months out, it’s just at that time when you’ve stubbed your toe on the kitchen bench, you know, and it really, really hurts.
Bill Gasiamis 48:14
That’s how soon it is for you in in the in the terms of like the stroke recovery timeline. It may as well be just a few days out of that particular foot injury because that’s how long it takes for the brain to heal and recover, get back online. And you’ve really got to be the person who makes who who’s in control of your recovery or who’s guiding your recovery. If you’re passive sitting around waiting for physical therapy, before you’ve done any exercises, your recovery will take longer, because physical therapists don’t enough.
Bill Gasiamis 48:56
It’s great that you go there because they can measure things and they can guide you. And they can give you advice on the right form and the right way to go about things. But if you were passive in your recovery, it would take a lot longer for you to achieve some of those goals that you want to achieve, which is to be up and about on your own or to be driving.
Bill Gasiamis 49:25
So there’s a lot of good signs there. And at the same time with the medical interventions of in the blood thinners and all the things that they’re doing to keep you from having another clot then it’s all gonna work out. You know, like, it’ll all come together at some point in time and you’ll be able to look back and go, Oh, my God, all those things that were happening at the same time that seemed like they were really hard and it wasn’t getting massive results. They’ve paid off now.
Neetu Mehra 50:03
Yeah, I think that everything happens for a reason. And we’re given these things that we can deal with, to make us stronger. And like, whatever happens to people I think happens for like a reason. I don’t know, in my reason yet, but I will eventually.
Bill Gasiamis 50:18
Do you think that’s sort of tied into your purpose? The reason that it occurred is tied into your purpose.
Neetu Mehra 50:30
It could be like my purpose of, yeah, like, clearly, I survived for a reason. Like I was on the floor for 12 hours. That’s not like, common to survive something like that.
Finding Purpose After A StrokeBill Gasiamis 50:46
Yeah, I don’t know what the reason that I survived was, I don’t know, like, the reason reason. But I did wonder why I had survived. Like, it really crossed my mind early on, like, I had survivor’s guilt. Yeah, I’m not sure if that’s a thing that you’re familiar with. But like, it was like, Why did I survive? I didn’t know whether I was worthy. Or whether I had earned it, or now, what am I going to do?
Bill Gasiamis 51:18
I’m alive, what the hell am I going to do now? Or how am I going to go about my life? And this podcast might be a result of that it might be one of the things that maybe I had to achieve or do or put out there. Because I survived. And because I was giving another chance, you know, I just can’t go back to being my old mundane self. And be who I was before that, like, it just didn’t seem like enough. That didn’t seem like the right thing to do.
Neetu Mehra 51:55
I think your podcast is great. You’re adding a lot of resources and valuable information for so many people. Do you feel that’s your purpose now?
Bill Gasiamis 52:06
Do I call it my purpose. The old man definitely didn’t do a podcast didn’t interview people didn’t interact with people who had experienced something like a stroke, or another disability or an injury or anything like that I interacted you know, with, we’ll call them normies, you know, normal people who were all just okay. And it was just a matter of time, I think before we I ended up interacting with people who are unwell, just happened to be I was young, I was 37.
Bill Gasiamis 52:42
So I had not known anybody who was, in my family, a member of our family, extended family, otherwise, who are friends who were injured by anything. I don’t know how you get to 37. And avoid all of that, but I managed to avoid it. And and then when it happened to me, and I met a whole bunch of other people who had strokes through the Stroke Foundation, I quickly realized that there’s a lot more people out there that are like me than I thought and being with them in there, you know, and sort of experiencing life through them.
Bill Gasiamis 53:33
Because I spent some time in a wheelchair. Like I understood what stress does to people, but then interacting with these people kind of gave me more of an insight. And then I was really shocked about the fact how naive I was or how dumb I was. And it wasn’t my fault. I just I don’t know what the word is. I don’t know if the right term is I had a dream run or what.
Neetu Mehra 54:04
You probably just weren’t exposed to those types of situations before Same with me and never interacted with these types of people until the stroke.
Bill Gasiamis 54:16
And then I felt more connected to people from the Stroke Foundation who I met through the Stroke Foundation than I had ever felt with other people that I’d met. And then I had all this information about all like yours very proactive. I made a lot of health choices. I made a lot of physical activity choices. I did a whole bunch of things to make sure that I prevented the next stroke as much as I could and that I also didn’t.
Bill Gasiamis 54:51
I wasn’t responsible for the next one if it was to come, but you came a few times and then And then I had stuff to share. And I figured, well, the these things have been really helpful for me, and how can I share those things that I’ve learned? So I started, somebody challenged me to do more than just advocate in my neighborhood. And kind of said to me, you know, there’s this thing called the internet, you want to look into that?
Bill Gasiamis 55:22
And I thought, okay, how could that work, and then I got over the, all the technology for years, and all that type of stuff. And I just realized, all I needed to do was get onto a zoom call and press record. And then I had a video and an audio immediately. And that was really good. Really good for me, I was getting therapy, every session that I was doing and recording an interview, it was helping me and it still does. And then. And then the old me never write a book about anything.
Bill Gasiamis 55:56
You know, I hardly read a book until the age of 37. And then, the idea for the book came into my head, I researched that. And it was such an organic thing and might have taken four years, and I never would have never would have thought that it would have taken me four years to write a book. But it’s the, it’s the Navigating the fatigue, the lack of clarity, the inability to sit in front of the computer and type for hours and hours.
Bill Gasiamis 56:30
It’s navigating all of that stuff that made it take so long, but now that it’s there, and it’s done. And it’s out, a whole bunch of feedback from people has been really positive. And every time I get some positive feedback about the podcast, or the book, or, you know, the other stuff that I do around stroke, it does feel like a purposeful pursuit, it feels like a rewarding and fulfilling pursuit.
Bill Gasiamis 56:59
And I never really had that before, it’s rewarding to be a dad and to raise family and to do all that kind of stuff. But that’s more more of an obligation. You know, if you become a parent it you’re obliged to ensure that your child is healthy fed, has you know, roof, well educated and all that kind of stuff, I feel like that’s more of an obligation even that gives you a little bit of purpose in life. Because really quickly, the kids leave home. And then you’re back to being yourself.
Bill Gasiamis 57:38
Again, it only takes about 20 ideas before they’re out of the house. And that’s a short amount of time. That’s, that’s, that’s kind of like a big distraction from your actual life’s purpose. I feel like kids are a little bit of a distraction, you take down the path. And if you don’t notice that you’ve put all your time and effort and your identity in being a parent, then it really catches you off guard later when they move out. Because now you’re not a parent anymore, and you don’t know what to do with yourself.
Bill Gasiamis 58:14
So I was kind of lucky that all this transition, then moving out, and maybe picking up these new skills and evolving, happened while they were you know, the stroke and that kind of happened when they were teenagers, and they were coming of age. So my transition into this new identity, this new version of myself this podcast and the book, and all of that came hopefully at the right time.
Bill Gasiamis 58:49
And I’m not sitting there now with an empty house and me and my wife wondering, what the heck what do we do now? And I’m only 50 Like, can’t imagine. Can’t imagine being not having this particular pursuit. Perhaps I would have picked up something else but let’s be honest, maybe I picked up something else to do on a Saturday morning or a Friday evening or whatever but I’m not sure. It would have been pretty hard to just go from being a parent to now they’ve moved out and now what do I do, how do I go about things.
Neetu Mehra 59:32
Yes, I think everything happens for a reason.
The Hardest Thing About Stroke For A Young Stroke SurvivorBill Gasiamis 59:38
What has been the hardest thing about stroke for you?
Neetu Mehra 59:43
Coming to terms that it happened to me and just feeling that my body is completely different.
Bill Gasiamis 59:55
Did you do the why me?
Neetu Mehra 59:58
Not really It’s almost like I’m taking one for the team because like, statistically like, something like this happens to, I’m not sure what the stats are, but like, I think yes, I’m the stat.
Bill Gasiamis 1:00:16
One in four people will have a stroke in their lifetime. It’s ridiculous.
Neetu Mehra 1:00:24
That’s pretty high.
Bill Gasiamis 1:00:25
80% of those strokes are ischemic. About just above 20% of the people who have an ischemic stroke will pass away after the first one. About 60% of people who have a stroke will go back to work in some capacity. And then the other 20%, so I think I mentioned 20 or so 60, and then the other 20 will not be able to go back to work in any capacity. So you feel like you’re taking one for the team?
Neetu Mehra 1:01:08
Yeah, one of my cousin’s husband said that to me, and I was like, Well, that’s very true. Because he lost his wife to cancer. That’s it’s like she took one for the team. So that was his thinking around it.
The Lessons From The StrokeBill Gasiamis 1:01:27
If it helps or not? Yep, that’s a big deal to take one for the team to be that person. The team doesn’t even know that you’ve taken one for them. And what has stroke taught you?
Neetu Mehra 1:01:54
That life is short. Might as well live it. And I feel like I’m happy that I lived before, not that I won’t live again. But like I didn’t sit back and let life lead me like I was proactive about things. If I wanted to go travel to that place, I would make it happen. So I think it taught me that like, you got to do what you want to do with in the moment. And don’t wait, don’t put things off.
Bill Gasiamis 1:02:25
I want to say that this is the state that you’re in right now like the zone that you’re in right now is temporary. Now, what that doesn’t mean is that I know how long it’ll take, it might take longer. It might take a year or two or longer. I don’t know what. But it’s temporary. And in the span of a lifetime. It’s a blip on the radar, really. But while you’re in it, I mean, it’s a little bit of a maybe for some patients, or some people, it’s not a big consolation for me to say what I’m saying.
Bill Gasiamis 1:03:12
And if you can get through this time, time will fly. You know, you’ll get to the other side, and you’ll go oh my god that was already on me as an example. It was already 12 years ago. That’s insane, that it’s gone that quickly. And that so much time has elapsed. There are some years in the middle there that are kind of vague, My Vague years after the third after the second blade that was quite vague.
Bill Gasiamis 1:03:41
And about a year and a half after my third blade and my brain surgery, I went through thyroid thyroidectomy part of my thyroid was removed. And that time was a bit of a hazy part as well. So I feel like in the last 12 years, I’ve lost maybe 18 months, early on and then I’ve lost kind of another two years after that. It just feels really bizarre and hazy. And I don’t have a lot of connection to that time. I remember the day that I woke up and my foot felt numb like it was yesterday.
Bill Gasiamis 1:04:21
And I just sometimes reflect back on it how much time has passed how long it took it felt for me to get to 12 years. And then also when I reflect back like how quickly it went. And those hazy times when things were really rough. They really do seem like a blip on the radar now now that it’s been 12 years because life has been because like you’re just go after everything so it’s been really full and rich for as long as possible.
Bill Gasiamis 1:04:53
And I’m not saying that there hasn’t been shit times there has been and there hasn’t been downtimes and bad moods and all In bad emotional states and crazy thinking patterns, everything has been there. But it’s been so full of a lot of other things like podcasts and writing a book. And in a few months, I’m going to do some presentations at some stroke conferences, that I reflect on it positively.
Bill Gasiamis 1:05:25
And that’s kind of why the title of the book is, the unexpected way that a stroke became, the best thing that happened was because like, because life’s short, I’ve squeezed as much as I can in the last 12 years. As I physically and emotionally could. So this time, it’s a blip in the radar.
Neetu Mehra 1:05:53
Yeah, cuz I think we can’t control what happens to us, but we can control how we react to it.
Advice From A Stroke Survivor To AnotherBill Gasiamis 1:05:57
Yeah, definitely how we respond. What would you say to somebody listening? Who’s going through what you’re going through? Who’s early on in their recovery? Or perhaps they’re a little further down the track? What would be a little bit of advice that you would give somebody?
Neetu Mehra 1:06:18
Don’t be too hard on yourself. I often find them hard on myself before the stroke and now and just work hard. But don’t don’t beat yourself up over things.
Bill Gasiamis 1:06:33
What kind of things? Do you beat yourself up? Over?
Neetu Mehra 1:06:36
Too much just thinking like, why isn’t my arm function or hand function coming back yet? It’s like I’m trying. And I’m like, even when I’m walking, like I’m commanding my foot, just take a step in a certain spot. Sometimes it doesn’t go where I want it to go. Couple weeks ago, I had a fall too, which was not fun. Is a setback.
Bill Gasiamis 1:07:03
Did you get injured physically?
Neetu Mehra 1:07:06
My left side was in a lot of pain. I had a big couple of big bruises on my left hip. Yeah. Overall, it’s fine. Not that bad. Just now there’s a fear of falling.
Bill Gasiamis 1:07:24
Yeah, that’s fair enough.
Neetu Mehra 1:07:29
That was on a day where I was doing so good. Like, I had just gone to physiotherapy. And I tried walking without a cane. Without supports, which was fantastic. And then I was taking a step into the house, and I fell on a day where I was actually having a good day, and it was progressing.
Bill Gasiamis 1:07:50
And that’s an example of pushing yourself beyond the limit, right? It’s testing your capabilities and learning the hard way that probably not there yet, but I think feels like you know, when those things happen, like you’ve broken a little barrier anyway. Because you had such a good day, you weren’t capable of doing things.
Bill Gasiamis 1:08:13
And I’ve tripped over my left leg plenty of times, especially going upstairs. Because my left leg, just a little less likely to clear the step at the right time, and if I’m not thinking about it, and if I’m rushing the bottom of my shoe, I just let the step and I fall over, going up this step. You do get better, and you start to adjust. And you start to do things a little bit differently automatically, and it will improve.
Neetu Mehra 1:08:54
It’s amazing how much focus it takes to even just walk up steps in general.
Bill Gasiamis 1:09:01
You have to think about what you’re doing rather than just do it.
Bill Gasiamis 1:09:07
I had a fall in our house when my wife went back to work. And the kids were at school. And I made myself some lunch, and I was sitting at the couch eating it. And I had forgotten that my left leg was numb and couldn’t feel the ground underneath it. It was probably month three or four or something like that. After brain surgery. I laugh now, but it wasn’t funny at the time.
Bill Gasiamis 1:09:36
I got up and I went to take a step with my left leg. And it just the knee just collapsed underneath my weight. And I felt with my ribs on to the arm rest of the couch. And the plate that I was holding went flying and smashed on the ground. And I ended up on the ground at home alone. feeling sorry for myself and definitely in pain. But that fall made me pay attention to me getting up off the couch from that day on every single day.
Bill Gasiamis 1:10:10
After that, I made sure that the first leg on the ground was my left leg. And that it’s the one that got me up off the off the couch. And if it couldn’t get me up to that meant that all I was going to do was fall backwards back onto the couch. So it was a really safe test to see if the leg was going to hold me. And then that kind of made me just pay more attention.
Bill Gasiamis 1:10:45
But it’s a lesson I would have loved to learn in another way, I would have preferred to learn it without falling around, especially my ribs. Thankfully, I wasn’t, but didn’t break anything or get injured. But then, even now, sometimes 12 years out, if I’m having a really good night’s sleep, and I wake up in the morning, my leg is still a bit sleepy, it takes a little bit of time for it to warm up and come online.
Bill Gasiamis 1:11:12
And if I get out of bed, because I get out, I slip on the left side of the bed, if I get out and put my left leg down first, which is what I always do, and it’s still sleeping. Sometimes I could fall, I could kind of lose my balance getting out of bed. I have to make sure that when I get out of bed, both my legs are on the ground. Before I go to take that first step and before I stand up, so even getting out of bed, I have to be alert so that I can make sure that I don’t have a full and end up in the wardrobe.
Neetu Mehra 1:11:54
Yeah, I feel like I’m more alert too since my fall, I’m very cautious and like mentally I’m trying to say like, in my mind, my legs are going to support me. I’m strong enough. I have to say like positive things to myself. And focus really, really hard.
Bill Gasiamis 1:12:09
I think you’re on the right track. Neetu I really appreciate you reaching out and coming on the podcast and sharing your story. I wish you well in your recovery. And I’d love to hear. I’d love to hear 12 months from now how far along you’ve come. So feel free to reach out.
Neetu Mehra 1:12:28
Okay, that sounds great. Thank you so much for having me Bil,l was really nice chatting with you and hearing some of your story as well.
Bill Gasiamis 1:12:36
Well, that’s it for a another episode. Thank you so much for listening. And being here. I really appreciate you, I do hope that you got something out of the interview. Remember, if you’re interested in a copy of my book about stroke recovery, you can grab one@amazon.com by using my name Bill Gasiamis In the search bar, or by heading over to recoveryafterstroke.com/book.
Bill Gasiamis 1:13:02
If you want to know more about my guests, visit recoveryafterstroke.com/episodes to find their social media links and to download a full interview transcript. A huge thank you to everyone who has left a review it means the world to me your feedback is crucial for the podcast’s success, helping others discover this valuable content and making their stroke recovery journey a bit easier.
Bill Gasiamis 1:13:28
If you haven’t left a review yet, please consider giving a five-star rating and sharing what the show means to you on iTunes and Spotify. For those watching on YouTube. Please remember to leave a comment below each episode, and subscribe to the show on your preferred platform to get notifications of future episodes. Are you a stroke survivor with a story to share now is the perfect time to join me on the show that interviews are unscripted and require no preparation just be yourself and share your experience to help others in similar situations.
Bill Gasiamis 1:14:05
If you have a commercial product that supports stroke survivors in their recovery, you can join me on a sponsored episode of the show. Simply visit recoveryafterstroke.com/contact. Fill out the form with your category and I’ll get back to you with details on how we can connect via Zoom. Thanks again for being here and listening. Your support means everything to me. See you on the next episode.
Intro 1:14:30
Importantly, we present many podcast designed to give you an insight and understanding into the experiences of other individuals. The opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.
Intro 1:14:47
All content on this website at any length blog, podcast or video material control this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis, the content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.
Intro 1:15:09
The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.
Intro 1:15:24
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Intro 1:15:49
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The post Young Stroke Survivor Neetu’s Ischemic Stroke at 44: A Powerful Story of Recovery and Resilience appeared first on Recovery After Stroke.
Dr. Kenneth Monaghan shares insights on innovative stroke recovery therapies, the power of neuroplasticity, and the essential support needed for caregivers.
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Highlights:
02:33 Introduction
03:57 Developing New Treatments For Stroke Recovery
12:14 Getting Involved In Your Own Stroke Recovery
16:56 Writing The Book Lights Mirrors Action
19:47 No Place Like Home For Stroke Recovery
27:39 The Milkshake Effect
42:48 Acknowledgement Caregivers And Recognizing Progress In Stroke Recovery
58:50 Importance of Sensory Substitution
Bill Gasiamis 0:00
This episode of the podcast is brought to you by headbed.com.au hey everyone, before we jump into today’s episode, I have something special to share with you. Back in episode 305, I had the pleasure of interviewing Catherine Randabel, the brilliant mind behind HeadBed.
Bill Gasiamis 0:20
The product is revolutionizing hair salons, especially for stroke survivors. HeadBed offers exceptional neck and head support during hair washes, reducing strain and enhancing blood flow. And for stroke survivors, this means a lower risk of arterial damage and less worry about another stroke, ensuring a safer and more enjoyable salon experience.
Bill Gasiamis 0:45
I’m excited to support a product that perfectly aligns with my mission of stroke prevention and safety. During our interview, Catherine explained how the ergonomic design of HeadBed prevents neck hyperextension a common issue that increases stroke risk.
Bill Gasiamis 1:04
With HeadBed you can feel assured and comfortable at the salon knowing that your health is being looked after. If you are a stroke survivor or know someone who is, HeadBed is a game changer for your next salon visit, be sure to check out episode 305 for my interview with Catherine and discover how this product can make a real difference.
Bill Gasiamis 1:27
Now for our listeners in the United States visit headbedusa.com to get yours today and enjoy peace of mind during your salon visits. I also wanted to remind you about my book about stroke recovery. It’s called The Unexpected Way That A Stroke Became The Best Thing That Happened.
Bill Gasiamis 1:45
10 tools for recovery and personal transformation pages inspiring stories from 10 stroke survivors and offers hope for those on the recovery journey. For more details visit recoveryafterstroke.com/book or search for my name Bill Gasiamis on Amazon.
Bill Gasiamis 2:05
Welcome back to a nother episode of the recovery after stroke podcast. This is episode 313 And my guest today is Dr. Kenneth Monaghan, a physiotherapist and researcher dedicated to developing new treatments for stroke recovery. In this insightful episode, Dr. Monaghan shares his expertise on the importance of education and motivation for stroke survivors and caregivers.
Introduction – Dr. Kenneth Monaghan
Bill Gasiamis 2:33
We discuss innovative therapies such as mirror therapy, and sensory substitution, the power of Neuroplasticity and the vital role of positive expectations in recovery. Join us as we explore practical tips and inspiring stories that highlight the journey from rehabilitation to thriving at home. Dr. Kenneth Monaghan, welcome to the podcast.
Dr. Kenneth Monaghan 2:57
Bill, thank you very much for inviting me. It’s a great pleasure, I have to say, I’ve listened to a lot of your podcasts over the last few months and been very impressed with a lot of the guests that you’ve had on very insightful into the whole world of stroke and stroke recovery.
Bill Gasiamis 3:14
Yeah, thank you so much. I do like to have a vast range of guests, from stroke survivors to people who help out stroke survivors to researchers to all sorts of people, doctors, therapists. So it’s good that you’re you also reached out because you’re in that space of helping stroke survivors and also putting information out there for caregivers. And we’re going to talk about your book in a little while. But before we go down that path and chat about that, tell me a little bit about your background and how you came to be involved in the space that you are and the work that you’re doing.
Developing New Treatments For Stroke Recovery
Dr. Kenneth Monaghan 3:57
So I’m a physiotherapist or physical therapists for the last 32 years. And I’ve focused and I suppose specialized in neurology physiotherapy over the last 2025 I live in Ireland and I run a research group which specializes in new treatments for how to repair your brain after you know neurology conditions and stroke being one of them.
Dr. Kenneth Monaghan 4:28
And I call my research group, the Neuroplasticity research group and it’s a part of the University where I work Atlantic Technological University in Ireland. And I have to say I have a huge passion for trying to develop new treatments that help patients to recover mostly in their own homes. I’ve probably about six PhD students that have passed through my books over the last few years and a number of master’s research projects.
Dr. Kenneth Monaghan 5:00
And all of those have been involved in developing novel or innovative techniques that help stroke patients in particular, to recover. So I’m very much involved in developing new technology. But, I also realized that, you know, from talking to hundreds of caregivers and stroke survivors that I’ve worked with over the years, that when patients go home, or when caregivers are bringing their stroke survivors home, most people tend to feel a little bit, you know, devastated and disappointed, because they feel that this is the, this is kind of the end of the journey for them.
Dr. Kenneth Monaghan 5:43
And that, you know, when they’re not in a formal rehab setting, that that’s really the best chance of their recovery gone. But I actually, you know, from the research that I’ve carried out, and also from everything that I’ve read, and from everything I’ve experienced, I actually feel that coming home can be a different phase of the recovery, and actually your home really has unexpected benefits that most people would underestimate.
Dr. Kenneth Monaghan 6:12
So that’s why I wrote the book, Lights, Mirrors, Action, because I felt that maybe a week to two weeks out from somebody being discharged home, they could benefit from certain information that would educate them and give them confidence, and the caregiver confidence as well that, you know, when they’re going home, not to be thinking as a disappointed person, but you know, looking and planning for that next phase, because that can be very successful as far as I’m concerned and it’s something I’ve learned over the years.
Dr. Kenneth Monaghan 6:45
So that’s, that’s probably my background. And since I’ve started, since I started writing the book formally about two years ago, and I started interacting on LinkedIn. And that’s where I met yourself and where I came in contact with your podcast, I have come across so many people that feel the same way that there is a need for some information to kind of give people confidence and guidance. And it’s been a fantastic journey so far. And I have to say, I absolutely love it. And hopefully, I’ll keep going for the next number of years. So thank you for the invite as well.
Bill Gasiamis 7:23
Yeah, you’re 100%. Right. One of the biggest challenges that I faced when I went home was no information whatsoever. Now, it’s 12 years since I started down this whole journey of stroke and recovery. And the internet was just sort of coming into its own, there wasn’t a lot of information online. And there certainly wasn’t a lot of books in publication that I could pick up and read. There was a few scattered here or there, but there wasn’t an abundance of them.
Bill Gasiamis 7:58
And I remember being at home with my wife and trying to work out what now, you know, what do we do now, nobody gave us any information. When they sent us home, they just said, go home and don’t do anything for the next six weeks until your next appointment. And then every time something happened because I had a bleed in the brain and the blood clot was still in my brain for quite some years after that.
Bill Gasiamis 8:23
We didn’t know what that meant, like, how does that impact the brain? How does it cause challenges? What does it do to to somebody? So when I noticed that I felt weird or strange or different, or there was a shift in the clot or something? I automatically thought, Well, I’m probably having another stroke. And what do I do about that? And of course, I wasn’t having a stroke every time.
Bill Gasiamis 8:54
But the fear and the concern about it, since you have no knowledge whatsoever meant that we ended up in hospital a lot. We ended up in hospital at the drop of a hat every time we thought something was wrong. You know, we went to the hospital, and we wasted resources, which is probably not a waste. It’s it’s resources, though that could be allocated to somebody else.
Bill Gasiamis 9:19
We also lived in anxiety and probably in fear. And we needed guidance, we needed somebody to tell us how to go about navigating the next six weeks. So we fumbled our way through that. And then six weeks later, I had another blade. But then that’s when things got really serious. So the blade that was in my brain doubled in size. It was about the size of a golf ball, the club that formed and it was the time when I came home where I had no I had problems with my memory.
Bill Gasiamis 9:51
I couldn’t form a sentence properly. I couldn’t start and finish sentences. My thinking was gone. I couldn’t work I couldn’t write an email, I forgot who come to visit me, there’s a whole bunch of problems. And of course, we don’t know anything about what that means we don’t know if they’re permanent, we don’t know if they’re temporary, we don’t know if it’s because of the clot.
Bill Gasiamis 10:12
We don’t know if there’s any damage. So we are just guessing, and we’re doing our best. And we’re just swimming in this massive ocean of experiences that we’ve never had before. And we don’t know how to navigate it at all. We don’t have a map, we don’t have anything. So in desperation, you reach out to the internet and you’re trying, you know, grasp on to some document that you might come across, or a little bit of research or whatever, and it is a hit and miss a lot of the time it’s hit and miss you come across something, and it’s not really relevant.
Bill Gasiamis 10:47
And you’ve spent ages trying to find it, and so on. And one of the reasons the podcast exists is exactly because like you don’t want it to address that same gap. It’s what do you do, and honestly, the caregivers that I had my wife struggled the most, because she’s the one that’s okay, she’s the one that has the task to suppose that they care for me and look after me and pick up the slack.
Bill Gasiamis 11:14
And she’s got no information, because before she became a caregiver, she had no idea what she wasn’t trained, you know, doctors and nurses are always in hospital. They’re always getting trained, they’re always doing extracurricular activities to keep ahead of the the research, etc. But the layperson doesn’t have any idea. And they’re given the biggest task of anybody. And that’s to care for a stroke survivor.
Bill Gasiamis 11:44
So I like the way you think I like that idea of sort of trying to fill that gap and trying to send people home with some information that they could read to guide them about how to navigate that. And I specifically like the fact that you’re doing that for caregivers, you have caregivers in mind, understanding that the caregiver if they get the support and the help, and that ultimately benefits them and the stroke survivor, and then that makes everybody’s life a little easier.
Getting Involved In Your Own Stroke RecoveryBill Gasiamis 12:14
And stroke survivors can be difficult at times, because they’ve had a stroke, and they’re dealing with altered, neurological way of being you know, they’ve completely altered could be deficits in arms, legs, could be speech deficits, could be eyesight deficits, could be all sorts of deficits. So that part like that part was the part that intrigued me the most that you felt that even though you’re doing such a large amount of work in that space of helping people with their rehabilitation, that even then when you sent them home, you felt that they were ill equipped is that right? Was it a kind of a sense that you need to equip them more, or further, or what was it?
Intro 13:05
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, doctors will explain things that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 13:07
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website now, recoveryafterstroke.com and download the guide. It’s free.
Dr. Kenneth Monaghan 14:11
I suppose I think that in terms of rehabilitation, a lot of people are searching for this golden ticket therapy that is the one thing that’s going to get them better after stroke naturally, everybody’s looking for that. And there’s probably from what I have read over the years and experienced there’s probably more than 30 different therapies that there’s evidence there that are safe that can be carried out and and claim to you know, help people to recover physically after a stroke.
Dr. Kenneth Monaghan 14:48
And each one of those is worth trying for somebody at home. There’s no doubt about that. But what people have to realize that there’s no one brilliant therapy that will get you better. And people also have to realize, from my experience that you have to try and become active in your rehabilitation program and become active in your decision making. And that’s a huge part of it.
Dr. Kenneth Monaghan 15:16
Because what I find not just with stroke patients, but people in general that I work with as a physiotherapist or physical therapist, patients tend to have a passive approach to medicine, I find. And what I mean by that is that and I do this myself, I found myself in you know, I was in with an orthopedic consultant only recently, because I have arthritis in my hip. And I actually even though I know, the exercises that, you know, should be done for arthritis in my hip, I actually felt almost intimidated to ask the consultant or to tell him a little bit about what I knew, in case I insulted him.
Dr. Kenneth Monaghan 15:57
Because I actually took that passive approach. And I think that this is something that’s going to have to change over the coming years where, you know, and I’m interested to hear your opinion about this Bill. But I think that patients, stroke survivors should try as many therapies as they possibly can, that are safe to do but when you try them, you instinctively know that one feels good for you, or, and helps you or that’s one that kind of you feel, is doing something for you.
Dr. Kenneth Monaghan 16:34
And on the other hand, you also know ones that don’t work so well. So even though my research group is working on a number of different therapies, which are innovative, and the examples would be mirror therapy, and the idea of sensory substitution and cross-education, there’s no guarantees that those things will be the ones that you should do.
Writing The Book Lights Mirrors Action
Dr. Kenneth Monaghan 16:56
But when I was writing the book, I was determined that I wasn’t going to overload people. So I was going to choose and it’d be six different therapies that people could at least start off with. And that might, you know, people might keep going for, you know, four weeks program because, and get a taste for those. And, more importantly, what I wanted to do was I wanted to tell you through the book that education and kind of information is so important before you even start.
Dr. Kenneth Monaghan 17:34
Because I suppose there’s a fabulous book that I’ve read, I don’t know if you’ve seen it, it’s called the expectation effect, and it’s by a man called David Robson. And you’ve probably heard that expression, if you think if you think you can, or you think you can’t, then you’re usually correct. And that’s actually so true in life is that, you know, if you if you believe that you can do something, are you can you believe that something is going to work for you. And then it there’s a much, much better chance that it will work for you.
Dr. Kenneth Monaghan 18:09
And it’s been proven through research that, you know, when doctors explain to patients, what therapies they’re going to be doing, or what medicines are taking, and what what what the likelihood is that they will work and how they work and explain that beforehand. So, so almost like priming the person before they start the therapy, they tend to do far, far, far superior than if you don’t explain that to people. And what I wanted to say to caregivers was that caregivers are overwhelmed when they go home.
Dr. Kenneth Monaghan 18:41
And because they’re taking on all these new tasks, your wife, I’m sure, probably had to start dealing with financial things, you had to do all the tasks around the house, you’d make all the decisions a lot that you were doing beforehand. And all I wanted to do was I wanted to kind of take one area off her hands, the area of you know, what should bill be doing each day.
Dr. Kenneth Monaghan 19:02
But I wanted to also say to her that, you know, you actually can be a brilliant person to help him because a big part of that, that help is just explaining certain things to him. So explaining to him that there’s a thing called Neuroplasticity, for example.
Dr. Kenneth Monaghan 19:22
Just knowing that, like if you’re sitting in that hospital bed a week before you go home, if that’s explained to you that there’s a thing called Neuroplasticity and that everything you do and every you know, can can actually make your brain change and can help you to build new pathways and that Neuroplasticity can happen at any stage, no matter how long you’ve been after a stroke, if that’s explained to you in a very easy to understand terms.
No Place Like Home For Stroke RecoveryDr. Kenneth Monaghan 19:47
Well, I think that’s motivation, I think to hear that actually is a very good starting point because now you’re starting to think well, maybe there is, you know, maybe there is things I can do. If your wife kind of explains to you a little bit about, you know, how therapies can be done and how, why your home, for example, can have huge, huge advantages that you don’t have in a rehabilitation center.
Dr. Kenneth Monaghan 20:12
And, one of those advantages is that, and again, another author that I’m very fond of is a professor in Trinity College in Dublin, Ian Robertson, he’s written a fantastic book called The Winner Effect. But what Ian says is that, when I read when we’re in our own home environments, our bodies potentially produce a little bit more testosterone, which is that hormone that helps us to kind of rebuild ourselves.
Dr. Kenneth Monaghan 20:40
And, we get that because the familiarity of being in your own house, I feel that too, you know, when I’m when I’m in somebody else’s house, and I don’t know, you know, where the cops go or where the knives are, where the jam is, you know, you feel so uncomfortable out of it, when you’re in your own home, and you know, everything and of course, the sights and the sounds and everything that are there.
Dr. Kenneth Monaghan 21:04
Apparently, this goes on in our bodies that we wouldn’t be aware of. And that gives us an actual physiological benefit or advantage that we wouldn’t have been aware of. And, and we can harness those things. So if you as a caregiver, your wife is expected caregiver kind of says those two things to you before you go home. She said, Bill, look at a read, you know, I’m reading research and when you go home, your home is actually a brilliant place to do rehabilitation because of ABC and D advantages.
Dr. Kenneth Monaghan 21:33
And when you go home, you Neuroplasticity is thing that can happen in your brain, and you have to realize that, then that’s going to be more motivational. I think I am I suppose I better ask you Do you know, would you feel that that’s something that, you know, if you go back to those days when you were in that hospital, if somebody kind of explained those things to you in a very simple to understand way? Would that have been a help?
Bill Gasiamis 21:57
Absolutely, it would have been a help. One of the big challenges is being in hospital and the whole experience, however, also being grateful that I’m in hospital, because I’m being cared for, and looked after. But at some point, you know, that all comes to an end. And you do want to get home. And I suppose I was keen to go home sooner than I was meant to.
Bill Gasiamis 22:21
So I was given a two-month stay. But I went home after four weeks, something like that about four and a half weeks. And one of the things that motivated me was Christmas being at home for Christmas, because exactly what you said, you know, I wanted to be home for Christmas in my own home with my family, the familiarity of that the whole, I didn’t want to spend Christmas in a hospital.
Bill Gasiamis 22:50
So I put a lot of work in to get home. And when you’re talking about Neuroplasticity, because I had almost three years of dealing with multiple blades, and then brain surgery and then overcoming the deficits after brain surgery, overcoming the fact that I couldn’t walk again and use my left side. I did a lot of research and tried to understand what I could do while I was being passive.
Bill Gasiamis 23:18
And while I was waiting for everyone to fuss about around me, I understood that Neuroplasticity was a thing, I must have picked it up from somebody else. But I took a deep dive into what Neuroplasticity is and how I could use it and harness it. And then I was doing what you mentioned in one part of your book, which is to imagine myself walking again.
Bill Gasiamis 23:42
And while I was sitting there in my bed doing nothing, and had plenty of time on my hand, I was imagining myself walking, and I would see myself in the rehab room, you know, doing the perfect walk even though I couldn’t do the perfect walk. So that when I got to rehab, I had given myself some additional neurons to start firing and wiring. So that when I did it, it was much more familiar to my my leg which had the deficits.
Bill Gasiamis 24:14
And then I suppose my theory was that I was going to be able to reduce the amount of time that I was going to be needing to learn how to walk again. And then I read your book and in your book, it basically says exactly that. And you know, it makes me feel it makes me feel well not validated. Not that I’m looking for validation. But I suppose for lack of a better word validated that I was on the right path.
Bill Gasiamis 24:42
Because not only have I thought of that, in 2014 You’re talking about that to people right now and you’re telling them to do that. And I can’t remember where I learned that. And I perhaps haven’t told as many people as hopefully, you’re going to get to tell when you see them every single day in your practice as well as from your book.
Bill Gasiamis 25:01
And that’s what people need, they need to know that without any additional effort, without any additional cost, without going anywhere and spending all their time traveling to and from and organizing a taxi because they can’t drive anymore or somebody to drive them, all they have to do is just imagine themselves walking.
Bill Gasiamis 25:21
And if they like meditation, or they’re curious about meditation, they can roll that into their meditation, they can imagine themselves walking with a quiet background of a track, that’s just playing, keeping them calm, keeping them grounded, and centered, and all that kind of stuff and creating the right environment for Neuroplasticity to occur. So, my wife didn’t know about Neuroplasticity, and neither did I, we had no need to know about it until we were sent home with all of this list of issues that you have to deal with and overcome.
Bill Gasiamis 25:57
And it that would have taken a little bit of that weight off of us. And it would have made it a lot easier and allow a lot and I know plenty of stroke survivors who’ve I’ve spoken to who, unfortunately, before they get to go home to hospital, they have a terrible interaction with a doctor who will say something ridiculous, like, you’re probably not going to walk again. And if if I have a hate, in this whole experience that I’ve ever had, with one of my biggest hates, is that doctors still to this day, stay there. And then you guys and loved ones and caregivers have to have to undo the potential damage that that might create.
Dr. Kenneth Monaghan 26:48
It does. I mean, again, back to the book that we talked about the expectation effect, you know, if your expectations are positive, and positive things will happen because your body responds because your brain is so much like a pharmacy. And in chapter six in the book, just to mention, as I talk about the famous milkshake experiment, I think you’re probably familiar with that Bill.
Bill Gasiamis 27:14
I’m familiar with the chapter. So before we go into that, grab the copy of your book, just hold it up to the camera there just so that we can show people who are watching on YouTube, what the cover of the book looks like. It’s called Lights, Mirrors, Action, we’ll talk about that title in a minute. But tell me about the milkshake effect chapter six of the book.
The Milkshake Effect
Dr. Kenneth Monaghan 27:39
Yeah, the reason I was mentioning it is that, to me, this is a phenomenal thing is that. So an experiment was done in Stanford University where as, a group of students were given a milkshake and they were told that it was high in calories, so much so that you wouldn’t need to take anything for the rest of the day. And the other group of students were given a milkshake low in calories, told that it was low in calories, so much, so you probably need two or three meals for the rest of the day.
Dr. Kenneth Monaghan 28:08
And what they were measuring was this hunger hormone called ghrelin, and they were interested to see how much of it was produced for the rest of the day. And as you can imagine, what they found was that the people who believed that they were having the high calorie milkshake, they produced three times less hunger hormone in their bodies. For the rest of the day, of course, the milkshake was the exact same, which they didn’t know, than the people who believed that it was low calorie.
Dr. Kenneth Monaghan 28:37
Now that is an astonishing and a phenomenal fact, just by itself, because there is no other explanation to explain why that would happen, except that your brain responded physiologically, to what it believed psychologically, it’s so simple. So when you hear that, now you start to realize how important and how impactful it can be, for people to say positive things to you and people to say that you know, you’re likely to have recoveries or you know, to kind of explain how therapies work and why they would work and so that your understanding and your expectations such is a positive one and that’s that’s such an important message to get across.
Dr. Kenneth Monaghan 29:30
As you were speaking earlier, Bill what I was thinking about, again, with Neuroplasticity was that I first encountered I suppose I really first encountered the idea of Neuroplasticity from from who I think is a brilliant, brilliant author and researcher is Norman Doidge, who has written those, you know, those fabulous books, the one called The Brain That Changes Itself.
Dr. Kenneth Monaghan 29:54
And when I got that book, whatever number of years ago at That was very much like a lightbulb moment for me because you know that on the simple understanding that our brains are changing every milliseconds that we’re alive and everything we’re doing, so me talking to you now here watching you, my brain is actually changing in response to that. And that’s, that’s such an important message to tell people.
Dr. Kenneth Monaghan 30:25
Because it allows you to realize that this process can kind of go on for longer than, than the six to 12 months, which was kind of the myth that people had, when I first started 30 years ago as a physical therapist. And that was the message that was sent to everybody and gender, we were trained this way, we were told that, you know, if a patient got, you know, between six to 12 months, that was really what the recovery was going to be. So without 12 months, you didn’t have a full recovery.
Dr. Kenneth Monaghan 30:58
Well, then you felt then that that was it, that’s the end of the line for me. So for somebody then like Norman Deutsch, to write a book that discusses so many different new technologies and cases and and mentioned the word Neuroplasticity and explain what that means that your brain can repair itself. And that that was phenomenon that that was brilliant.
Dr. Kenneth Monaghan 31:21
And then what so our research group, in the university in Ireland where I work with, I almost use Norman’s book as a template for some of the projects that we were doing, because, and that’s where the idea of sensory substitution came along, which we might discuss at some stage. But what was brilliant as well was that I had been, I had been hugely interested in the whole idea of repetitive practice and kind of repetitive hours of work. And where I first heard about this or read about this was an author called Malcolm Gladwell, who wrote a brilliant book called Outliers.
Dr. Kenneth Monaghan 32:05
And in that he talked about this principle of the 10,000 hours rule. And the 10,000 hours rule was something that was being applied to sport and to business. And essentially, it said that, if you do 10,000 meaningful hours of practice in any area of life, then you can become an expert. And there’s, you know, Tiger Woods would be an act would be an example of doing that in golf, as some of the chess grandmasters.
Dr. Kenneth Monaghan 32:31
And when I read that, and because I was so involved in stroke research at that stage, that’s, that’s when I really felt that that principle could be applied to rehabilitation as well. However, the most 10,000 hours or that principle is a lot of hours. So if you’re sitting in your home, as you know, yourself, no matter what therapy I give you to do that kind of repetitions and things, it’s hard to motivate yourself to keep doing that.
Dr. Kenneth Monaghan 33:01
So an important principle that we mentioned in the book, and you, hopefully you would agree with this is that it’s very important to see bits of progress, so that you can prove to yourself that you’re making, making recovery. And actually, Ian Robertson in that book I mentioned before the winner effect, he again says that when you see a little bit of recovery, so for example, Bill, if you could move your arm to here, and you use a measuring tape, and you know, you can move it to centimeters more, and you’re measuring that, even if it’s not the most accurate measurement, every time you see that progress, again, your body responds by producing this extra testosterone.
Dr. Kenneth Monaghan 33:39
So it’s like these little wins help you to be more likely to get more wins in the future, if that makes sense. So So now you’re going to building up the the home environment that has the kind of extra testosterone, if you can measure in a very simple way progress, you get the testosterone. And if you do this repetitive practice, and of course, what was very lucky for me, I suppose in one way, it was very close to when I had the book finished. The Irish and the UK and American Stroke Association’s came out with new clinical guidelines are they kind of redefined the guidelines.
Dr. Kenneth Monaghan 34:14
And one of them, well, two of them. One was that they for the first time said that repetitive practice is definitely evidence, you know, there’s evidence to say that this is what stroke survivors should be doing, or it gives them the best chance for recovery. So that was definitely backing up what what I was thinking and what I was talking about. And then the second was that stroke survivors, if possible, should be aiming to do you know, between two to three hours of little packages, you know, of therapies during the day that they find work for them.
Dr. Kenneth Monaghan 34:48
And if it’s possible at all and again, people get tired and of course, fatigue is a very big part of your recovery and it’s and and that’s, you know, you have to have Is the juggle with those things. But if possible, you’re aiming to do two to three hours of therapy every day. And when I heard this, this was this was fantastic for me, because this is what I had believed all along, or that I had kind of the message that I had been portraying in the book. So it was great to have the backup from the professional associations to kind of say that this is really what we’re looking for.
Bill Gasiamis 35:24
Finding similar anecdotes as well, like, there’s people that I’ve interviewed who do little and have, you know, small outcomes, or that don’t have such big results yet. And they might be doing a little because they are still very fatigued, and they still grappling with all of that. And then there’s people who have a stroke, and then running ultra marathons. You know, so the, the spectrum is very vast, it’s huge, and there’s so many different versions of recovery in between.
Bill Gasiamis 36:02
But it is true that with time, people will tell us that, you know, I’ve interviewed a lot of stroke survivors that are 10 years out and 15 years out, and then they’ll tell me that they’ve had gains in the last few years. And they didn’t expect that it was something that just came out of the blue. And it just sort of showed them another level of recovery that kicked in.
Bill Gasiamis 36:26
And it was just as a result of going about life as normal, you know, doing business as normal, which is going about their home, doing the tasks, perhaps, you know, being a husband, or a wife, or an employee, whatever they were, and they just found out that all of a sudden that they had this wind, and they might not be able to explain it.
Bill Gasiamis 36:47
But if you dive a bit deeper into it, and you ask them what they were doing different or what they were doing the same, they might tell you that, you know, they always spent five minutes helping their hand to move or, you know, picking something up and putting it in a different position. And there is no doubt about it, that the Neuroplasticity of work.
Bill Gasiamis 37:12
And research does show that the more you fire off a set of neurons and neuronal pathway towards a task, the more likely that neuronal pathway is going to become embedded in the brain. And as a result is going to be there to support that movement. And also perhaps bypass the original path for that particular task. Now, of course, obviously, we know that the stroke survivors who will struggle with some exercises because they might have spasticity in the hand, so the hand might not physically open to get them a result that they specifically want.
Bill Gasiamis 37:52
But we’re talking about here, in general, even if it’s not a task, by opening the hand, perhaps it’s walking and walking doesn’t look like it did before stroke. Even if it’s moving in an upright position that’s hunched over or in a different kind of way than it used to be. It’s still walking, and it should be considered a wind. And I highlighted in section three of your book in the table of contents, chapter nine, I highlighted a win is a win.
Bill Gasiamis 38:22
And that’s exactly, we’re going full circle. Now back to that whole idea of no matter how little the gain is, or the winners, it’s really important to recognize it and celebrate it and make a note of it, and refer back to it every once in a while and mark it as a point of a place that you’ve arrived so that you can go back and see in 12 months, how far you’ve gone.
Bill Gasiamis 38:49
And one of the things that I’ve said previously to caregivers is that it’s a good idea to record their loved ones or their patients or whomever. And then at the six month mark, show them the progress because there will definitely have been progress in some way, shape, or form. And it’s really important to be able to give them a picture of what that looked like. I remember going to counseling and seeing my psychologist.
Bill Gasiamis 39:16
And she initially, you know, six to eight weeks out picked up that I wasn’t speaking, like I was previously that I wasn’t able to form and complete sentences and my thoughts were all over the place. And then every once in a while, she’ll remind me, you know, six weeks ago, you weren’t able to have this conversation or answer this question like that, do you remember?
Bill Gasiamis 39:41
And I would say I don’t remember but she would encourage me and tell me that it’s definitely the case. And then that would make me feel better. And then that would allow me to celebrate that win and take a little bit of the load off. And I’d feel a little bit more encouraged to continue going after you know the recovery.
Dr. Kenneth Monaghan 40:03
There’s two or three things you said there that are there, they’re actually huge, very important. And I agree with completely. And the last thing that you’re talking about is the recognition of progress. And I see this, I run a practice a couple of evenings a week, in my local town. And this is the thing that when patients come in to me, they can never tell whether they’ve made progress for the most part unless they’ve made huge progress.
Dr. Kenneth Monaghan 40:32
So I suppose the analogy here is, is a bit like our kids, we never really see them getting tall in front of us, because unless, unless we’ve measured, you know, their heights on the walls, and have that famous marks on the walls thing that goes on, because when you know, granny, who hasn’t seen them for six months comes in, they say, Oh, my God, James, and Alan got so tall, you know, and you’re kind of going to get there.
Dr. Kenneth Monaghan 40:55
And of course, that’s the reason because it’s if it happens so slowly in front of you, you can’t see it, and patients are the same. So if I have patients that have, you know, sore shoulders, and you know, they can only move their arm to here, when they come to me, but they can move to here, the next day they come in, just to be able to prove to them that they can do that is almost like phenomenon, they just as you say you felt great when it was proven to you that you were doing better.
Dr. Kenneth Monaghan 41:22
And what I was saying in the book was that in terms of a very simple thing to do, and I know that this is a very, a lot of stroke survivors find this very difficult, but just to take a video even even, you know of walking up the corridor. So I am I’ve been working with a stroke family and close to us over the last few months. And we actually did this at the start, we took the you know, the we took the walking and he was walking with a cane, and you could see the kind of, as you said, the very slow walking and the steps were very small.
Dr. Kenneth Monaghan 41:55
There’s no kind of continuity with it. And we use take a video every two weeks of the walking from, you know, more or less the same position. And it was amazing just to see the difference and even show that to the stroke person themselves. And you could just see the smile on their face. You know, they it was just a realization that it had changed so much from that.
Dr. Kenneth Monaghan 42:23
And that was really such a brilliant thing. And you see the other thing that you mentioned there, which which I which I’m hugely interested in was the whole issue of you were talking about your caregiver or your wife, acknowledging what you were doing and kind of recording what you were doing. And I think this is a very, very important point, because there’s a psychologist in America he’s called Dan Ariely.
Acknowledgement Caregivers And Recognizing Progress In Stroke RecoveryDr. Kenneth Monaghan 42:47
And he’s written a brilliant book called Predictably Irrational. And one experiment that he doesn’t know if it’s okay to mention it is he doesn’t experiment with Lego Bill. And what he does is he takes people to groups of people, and he gives them the he’s giving them sets of Lego that maybe takes them 10 minutes to make, and he’s paying them to do it. And what he’s interested in is, every time they do a Lego set, they come and get the next one, but he pays them a little bit less for the next one.
Dr. Kenneth Monaghan 43:21
And he pays less for the next one. And he wants to see at what point do people feel that it’s not worth their while to keep going. However, there’s a little trick to the experiment in that when one group of people come up with their Lego set made and they come to the researcher, the researcher looks at the Lego set, they acknowledge it and they say well done that looks very good.
Dr. Kenneth Monaghan 43:48
And then they place it behind them in a place on a shelf where the person can see it. The second group, they come up the researcher, they look, they don’t say anything much they kind of nod, and then they break the Lego piece up and they put it in the Lego bin under the table. And then they hand them the next set, they pay them for that one. And this is what goes on.
Dr. Kenneth Monaghan 44:12
And I suppose you can imagine what would happen, the group that where their work was acknowledged and where their work was recorded, and basically had something there visually to see where they had a bit of pride in what they were doing. They kept going for almost twice as long as the people where the work was not acknowledged where there was no record of it being done, even though that we’ve been paid the same thing.
Dr. Kenneth Monaghan 44:36
And the reason I’m mentioning this is that this same thing happens in human nature in every aspect of life. I mean, I see it in my own work sometimes, you know if if somebody a manager or somebody says to you, God Ken you’re doing a great job, which doesn’t cost anything. It’s a huge motivation keeps you going. If you’re a stroke survivor, and somebody you know is acknowledging that you are, you know, Bill, you’re doing fantastic work.
Dr. Kenneth Monaghan 45:02
Actually, you know that we record how many repetitions you did today, with keep a log of it, we’ll actually see that the log, you know, is growing each day. Or if it’s steps, we record the steps on our step counter or Fitbit. And we have that. So we at least can look back and say that look at a month ago, this is what we were doing. Look at the volume that you’ve done fairplay to you’ve done really well.
Dr. Kenneth Monaghan 45:26
And a caregiver can easily have the qualities to do that. And it’s one of the things that they don’t realize is so important. Just to just do that record what people are doing knowledge, what they’re doing, praise them for it is like in the business world, we do much more, we can do twice as long, because we just that’s the kind of motivation. And I think that’s a very interesting concept that Dan rarely mentioned. And I think I think we should be very cognizant of that.
Dr. Kenneth Monaghan 45:56
And then the final thing that you mentioned, just again, with your walking was that, I suppose over my 30 years, I kind of feel that, as I said to you earlier, there’s there’s probably 30 therapies that people can do. But I fully believe that it’s the sequencing of therapies is actually an important thing that people don’t think about. So if we have four or five therapies that I think you can do during the day, and of course, this is the beauty of being at home, as well as that, you know, the night before, we might have planned that you’re going to start your therapy at 10 o’clock or 10am.
Dr. Kenneth Monaghan 46:36
But when you wake up in the morning, and you feel very tired or extra fatigued, because of whatever’s going on your life, you can throw that out to 12 o’clock or one o’clock. But when you’re in a rehab center, you don’t usually have that flexibility, you know, your therapist has your therapy scheduled at a certain time. And if that suits the way you’re feeling that they’re great, and if it doesn’t, sometimes that may be means you might miss out on your therapy on a particular day.
Dr. Kenneth Monaghan 47:00
But if I would feel that, and I suppose I use this analogy of lights, MERS action a little bit to stand for the sequencing. So I would feel that lights kind of really, you know, is standing for those therapies that kind of warm up or wake up your body and I would include walking as being one of the first things that should be done. So if if you can walk and if if, if you’ve been encouraged to do walking, and you you believe about walking and you know, the benefits, then I would be saying to you let walking be one of the first things you do each day, because it’s kind of warming up your body.
Dr. Kenneth Monaghan 47:35
And it’s kind of you know, getting that brain producing those growth factors and hormones that are produced that probably allow you to benefit a little bit better later on. And I would feel that then after being warmed up, that if you’re going to do some simple stretches for your limbs that you know, keep the keep you from developing contractures. And you know, there’s some very simple stretches that can be done.
Dr. Kenneth Monaghan 47:59
And I mentioned some of those in one of the chapters as well, I would feel that’s that the correct place to do that. And then after that, then we’re into our therapies that can kind of excite the brain or, you know, energize the brain. And that’s, that’s where, what, what I feel are the kind of mer therapies or the sensory substitutions or the cross educations are those therapies that kind of potentially excite your brain and allow more Neuroplasticity to potentially take place.
Dr. Kenneth Monaghan 48:28
And then after that, the normal things you do in your day, you know, your normal functional activities that you would do around the house, like lifting things, you know, cutting things, opening jars, while those things I feel, then that you have a better chance that when you do those, because you’ve kind of set the environment in your brain to be, you know, you know, energized and kind of excited, I think that there’s a better chance that you will recover a great new pathways because of that. So I would feel that sequencing is quite an important thing as well. So I don’t know how you feel about that.
Bill Gasiamis 49:01
I agree with that, and flexibility, especially in your timeline and your shedule because if you wake up in the morning and you’re feeling terrible, then nothing’s getting done. Nothing has been done. Really, I still experienced that. Sometimes, you know, and I’m 12 years out. So I wake up in the morning, if I had a bad night’s sleep, there is nothing getting done in the morning.
Bill Gasiamis 49:22
It doesn’t matter how motivated I want to be or I think I am. It’s just not getting done. And the best thing to do the safest thing to do is to do nothing. And then allow myself to slowly warm up, wake up whatever the word is that I need to to get to that particular day. And then after that I can definitely consider doing that particular exercise of Sometimes I wake up in the morning at six and I feel like I need to go to the gym, and I’ll wake up in the morning and I’ll go to the gym at six in the morning.
Bill Gasiamis 49:58
Sometimes I will not get there. for the whole week, because I just cannot get my head around getting there. And you know that going to the gym and not feeling good about my body means that I don’t put a good exercise a good effort in into the weightlifting. And perhaps my form is out. There could risk injuring me or pulling a muscle or causing more long-term damage. So the flexibility and not being hard on myself for not doing the gym today, that’s really important as well.
Bill Gasiamis 50:29
So waking up in the morning and deciding, I’ve got 25 emails to answer. And then being really upset with myself that I can’t answer, it doesn’t also help. So it’s like, very important to be able to be flexible. And to not give yourself a hard time to give yourself a break. And to say, look, okay, we’re having a rough day, today’s not the day, let’s fight the battles we can fight when we can fight him. And it kind of puts you in a sense of more of a sense of control, right? Not that we’re in control of anything really.
Bill Gasiamis 51:05
But in the sense of like, I’m gonna go with the flow. And when you’re in flow with your particular mood, or your energy levels are experienced, when your head is on board at the same rate as your body, then you can just get through it. And I feel like the healing time decreases as well, like that recovery from that terrible night’s sleep decreases. If I’m exerting energy and being hard on myself and giving myself a hard time as well as being low on energy, when I wake up, it’s just going to make the day worse, and it’s going to get things happening worse, you know, my take it out of my wife or I might interact badly with one of the kids.
Bill Gasiamis 51:44
And it’s all things that I don’t want to be doing. So that’s become really good at trying to go with the flow and try to be flexible with my timeline. So that nobody is expecting me to respond to an email, because I haven’t set an expectation that as soon as you send the email, I will definitely answer it within three minutes. And then nobody is expecting that type of a response from me. So I can look at the lifter List of 25. And I can get to them in my own time. And I might feel good about the fact that I answered three of them, or four of them today.
Bill Gasiamis 52:24
And the others go in to do this for tomorrow. And if I wake up in the morning feeling great. Well, then I’ll I’ll go through a few more and send them out the the things that you’re suggesting a very common sense things there. It doesn’t sound like you’ve rewritten anything, or created anything spectacularly new. And that’s what I like about your book, it is back to basics. It’s just standard stuff that all people may already have known that they’ve forgotten about, or they’re not completely.
Bill Gasiamis 52:58
They’re distracted by other things. So they just haven’t come back to those standard, simple things. And that’s what I like about your book, it’s very it’s not very scientific, from the point of view, or we’re not reading literature, pieces there that are about, you know, the studies and the research and the data, we’re just actually taking examples, you’re applying it to common day, everyday life, and people can definitely benefit from it.
Bill Gasiamis 53:26
Caregivers, most importantly, can definitely benefit from it. In that time where maybe the person who you’re caring for is resting or they’re not in your care for the moment or you’ve got some time to yourself, you can read it. And as a result of that you can make your your role as a caregiver a little easier, I feel.
Dr. Kenneth Monaghan 53:49
Yeah. Well look when I was when I started writing the book. I was working with three stroke survivors and their families and very closely in particular, I was obviously, you know, I had heard and interviewed lots of stroke survivors hundreds over the few years beforehand.
Dr. Kenneth Monaghan 54:09
But what I was hearing was that it was very important to write the information in a very easy to understand way because, you know, if it’s if it was a caregiver, then they don’t have help, you know, they didn’t have health background or healthcare background and you had to try and write it in some way that it was very easy to understand.
Dr. Kenneth Monaghan 54:28
And actually to be honest, I’ve even my wife Maria, I, she didn’t read the book or until relatively recently and I actually she said to me that she was almost a little bit afraid to read it because she thought that she wouldn’t understand it because it was she was expecting it to be a lot of medical jargon and a medical terms as you just said.
Dr. Kenneth Monaghan 54:50
But actually she she she enjoyed it because she said it was just very simple. But what just to say to people that there’s there’s about 140 footnotes of evidence that goes along with the information. So if the want the evidence of your healthcare professional and you’re reading it, it’ll direct you to where the evidence is.
Bill Gasiamis 55:13
It’s evidence based, but it’s not a, it’s not an academic.
Dr. Kenneth Monaghan 55:22
No, and I set out and also to I found from looking at an awful lot of stroke books that I had read, obviously, when I was researching that a lot of stroke books tried to do in my mind a little bit too much, because they try to tell you everything about stroke, they tried to do the medical side of things, and it’s driving, you know, the different types of strokes and the medication for strokes and all those things.
Dr. Kenneth Monaghan 55:45
And I kind of felt that, you know, I don’t want that part, you know, we’re going straight in here into, it’s a week from your discharge home, you are going to feel disappointed, you’re you’re not looking forward to this because you’re going to be disappointed. And I want you to so many to give you this book and read it are you give it to your caregiver who’s also going to be stressing, because they’re not looking forward.
Dr. Kenneth Monaghan 56:11
And it to give you confidence, it gives you a kind of a going, oh my god, like these are the things that go on. If I explain this to my stroke survivor, that hopefully will motivate them that, you know, when they get home there, there is a program. And then I wanted to kind of have a definite, you know, I’m not saying that the program I’ve laid out is the absolute recipe because it isn’t the recipe, but it’s a recipe that can be tried. And it’ll get people going, and it’ll give them a sensible one to try and do.
Dr. Kenneth Monaghan 56:43
Now, and it’s lovely for you to say to me that, you know, it kind of sounds like we’re taking common sense things and we’re just repackaging them a little bit. And that’s exactly what we do. A lot of times, I mean, a lot of, you know, famous therapies and things, I often say the likes of Pilates and things like this, Pilates is a is a hugely successful therapy that talks about, you know, doing core exercises, but when you break it down, Pilates is very simply simple strengthening exercises, and sometimes simple, you know, stretching and things are incorporated.
Dr. Kenneth Monaghan 57:16
And what it becomes part, because there’s a you know, there’s, there’s a whole life around that and people have become to love it. And it becomes popular. But essentially when you know, but lower down. We haven’t, they haven’t created anything really too new. It’s just how they different simple exercises are arranged into a program that works for people.
Dr. Kenneth Monaghan 57:43
What is discussed in my book is are some innovative term, I suppose, I use the opportunity to actually introduce three different types of therapy that maybe people might not be so familiar with, because this was the focus of my research group. And those therapies were number one mer therapy, which which a lot of people are used to, but actually, I’m quite surprised because I spoke to a stroke family in Canada only recently, and they had never heard of very therapy. I was very surprised at that.
Bill Gasiamis 58:20
That person had a deficit in one of their arms?
Dr. Kenneth Monaghan 58:24
They did well, it was actually the son of the family that had the stroke. And and actually they had been to lots of different or, you know, different places looking for kind of solutions. But they never heard of mirror therapy, which I was surprised about. And I don’t know if this is common, it was on a snapshot. But when you’re involved in these therapies, you always assume that everybody knows about them.
Importance of Sensory SubstitutionDr. Kenneth Monaghan 58:51
So to hear that somebody didn’t know about that was reassuring for me that it was good then to be talking about it. The second thing we talked about is the whole idea of sensory substitution. And this is a very interesting area. And is it okay to talk about it a little bit?
Bill Gasiamis 59:09
It is because I’ve delved a little bit into sensory substitution and I interviewed for episode 200. I interviewed Cheryl Shiltz, who was a lady who was one of the first people to substitute inner ear and her balance with her tongue. And that work was done by Paul Bach-y-Rita and his team. Some researchers from Massachusetts, from the University somewhere in Madison, Wisconsin or whatever, way around that goes.
Bill Gasiamis 59:47
And Cheryl is like patient number one in this particular field in that when she was able to reestablish her balance by training her tongue to take over the role of her damaged in a year. It opened a whole world of possibility for people with all sorts of issues. So I’d love to hear about your thoughts on sensory substitution.
Dr. Kenneth Monaghan 1:00:19
Well, it’s a I mean, it’s brilliant. I just like yourself when I read Norman Doidge’s the brain that changes itself. And I read that chapter about Cheryl, and they were termed wobblers. So essentially, when women who were pregnant, were put on an antibiotic afterwards, if they needed it, they use an antibiotic called Gentamicin. And if you were on it for far too long, it destroys the vestibular apparatus in your ears, which is your balance mechanism.
Dr. Kenneth Monaghan 1:00:52
So these people’s lives were ruined, and she probably would have told you all that experience. And then Paul Bach-y-Rita developed this very novel idea that if the information from the IRS wasn’t, you know, working correctly and going up to your brain and telling your brain, how to control your balance, could other information be substituted from it. And of course, what he did was he created a like a piece of chewing gum or a piece of plastic with sensors on it that glow on the tongue, as you’ve mentioned, and they were attached to like a Bob the Builder helmet.
Dr. Kenneth Monaghan 1:01:24
So when the person when she went forward and backwards, a certain array of sensors were stimulated. And then when she went side to side, different array, and when so you know, and and what’s what, what was brilliant is your tongue is so sensitive here that the brain was, was able to figure out, the brain figures out essentially, those three different messenger messages, and it was actually able to kind of reestablish an ability to control balance, which is phenomenal.
Dr. Kenneth Monaghan 1:01:55
So when I read that, first of all, excuse me, I actually had a PhD student that was just starting off with me, and we thought, I thought we’ll get involved in this area, I think this is great. This is great potential. And we actually contacted an entrepreneur in London, I think, who had actually started off with the intention of setting up a huge business around creating tongue stimulators, because the whole science sounded interesting. And he was a very interesting character.
Dr. Kenneth Monaghan 1:02:28
But his the interesting became not so interesting when he wanted about $15,000 from us to get us involved in the research and essentially, do research that would have helped him to promote this. So we figured this wasn’t going to be possible, we didn’t have the money and also didn’t make sense to helps to help do the research in that area. So what we started doing was we, my PhD student, started investigating whether other senses, and that could also be used instead.
Dr. Kenneth Monaghan 1:03:01
And what he found what Peter Lynch found was, and we’ve published a number of papers on this, some systematic reviews, which is very good evidence, he found that tactile sense or touch sense or vibration sense, and is one sensation that has potential to substitute for missing information. The other was hearing our auditory information. So what we set about doing was, and again, the idea of sensory substitution is very much that if, you know, if you have a stroke, and you’ve had your arm and disability.
Dr. Kenneth Monaghan 1:03:40
The normal information that should go every day, and every moment up to your brain is not going in that fashion. So could we substitute something else, and what we’ve been working on in our lab is we created a device that, you know, if we, if we if we use, if a patient holds a sensor that gives a vibration, are they they and they hear a sound while they’re trying to stand and re re learn how to take weight on their legs. So that if they take a lot of ways, they they feel they get a very big sensation and hear a big sound if they take very little weight.
Dr. Kenneth Monaghan 1:04:25
They you know, get a small sensation and very small sounds and then there’s that sweet spot that you know the correct weight. We find that patients in our trials are doing really, really well with this they find that this is the brain is essentially figuring it out. And my analogy of this here is very much you see the glasses that I’ve on. I don’t know do wear glasses Bill, but I wear what’s called very focal glasses.
Dr. Kenneth Monaghan 1:04:53
So these glasses have three different types of lenses in them. So the bottom lenses for when I’m reading, and the middle is for when I’m looking at television and the top for when I’m driving. And when I got these at the start, I actually, I was so disappointed because I thought to myself, my optician has definitely got the prescription wrong here, because I can’t, I can’t use them. It’s It was ridiculous. I know. But after about almost a week, something clicked and they were perfect.
Dr. Kenneth Monaghan 1:05:26
And I I understand now what’s happening is that our brain, my brain has to figure out very subtly how to tilt my head. So that when I look at a book, The tilt happens at the right time, when I look at the television, a different tilt happens. And when I’m driving a different tilt happens, and essentially, the brain figures that out. And that’s was the that’s, that’s the principle or the concept behind sensory substitution, that if you can input more different information into your brain, while you’re doing a similar task, it’s possible for the brain to figure it out.
Dr. Kenneth Monaghan 1:06:04
And in my book, I wanted to try and come up with, you know, a cost effective or some version of this, and that patients can try at home in their own homes. And what I did was, I I’ve given the example of a digital weighing scales that people can use a bit like what I was discussing earlier that, you know, you can, you can kind of practice taking weight using this and making a small little platform for yourself. And then again, it’s just a cost effective way of using a kind of a, an innovative therapy, that that has huge potential down the line for rehab centers. But it’s a version that you can use at home yourself. So I don’t know, how does that sound to you?
Bill Gasiamis 1:06:44
That sounds fantastic. I mean, I love the idea that somebody who’s actually working in that space and doing the research in that space, because let’s face it, I mean, most of the people who deal with stroke survivors, they get them to the point of this is the best that we can do the the allocation of rehabilitation is over, the insurance company won’t fund it anymore. And then they’ll send that person home.
Bill Gasiamis 1:07:10
And then the task is up to the caregiver and the stroke survivor to do the rest of the work to get their leg working better, or, or doing more or, or whatever that is. And that would be a big setback. And like you said, some people will leave hospital, they’ll come home, they’ll feel better about that, but some will leave hospital or their rehabilitation, they’ll come home. And they’ll feel worse about that. Because they feel like they didn’t get enough rehabilitation.
Bill Gasiamis 1:07:39
So any tool that can do that can support somebody to get additional movement in their leg is fantastic, or in their arm. And I love the idea of connecting that to a sound and then also to a physical stimulation stimulus like vibration. And that teaches that the brain the difference in the in where the leg is in the world, because that’s what I had an issue with, I had an issue with neuro with proprioception, so my leg didn’t know where it was in the world.
Bill Gasiamis 1:08:14
So when I was first learning how to walk, I would stand very heavily, I would lean very heavily on my leg and jaw, my whole leg all the way up and down up to my hip. And it wasn’t pleasant. And then some days I’d be standing still at the bench at the kitchen, making a cup of tea or something. And then because I wasn’t moving my leg or it wasn’t in the right position, my knee would just collapse and I would trip over and I would fall.
Bill Gasiamis 1:08:46
So any additional information that my leg had, had to come from learning the hard way had to come from either jarring, and and putting my knee in the wrong position or dropping that knee and tripping over hat. That is a way of learning but it’s probably not the ideal way of learning. So yeah, I love that work, I do hope that you guys get some results that you can work with. And you can develop something that is going to make a difference.
Dr. Kenneth Monaghan 1:09:18
It is and I suppose look up behind all of this is a full race in a research lab that’s working to try and develop, you know, systems that allow patients to do therapy in their own home and maybe be monitored remotely. And that’s kind of the on one side of of what I’m interested in. But the book was was the idea was could you develop something that is you know, that you don’t have to buy fancy equipment for you don’t have to outlay a lot of money.
Dr. Kenneth Monaghan 1:09:51
And so those three therapies that I discussed, you know, mainly because they’re they’re very innovative things and they’re very exciting the potential of them, but you No mer therapy, you can buy a 10 to $15. myrrh, and you can place it on your table. And you can get huge benefits from you know, on your arms and in your legs. And again, as some people use that, and they find it phenomenal.
Dr. Kenneth Monaghan 1:10:13
And some people also then use it and they don’t like the concept of it at all. And that’s the way that it should be done, you should try these things. And you get your gut feeling whether they they’re there for you or not for you. The the concept of cross education of strengthening. And I know there’s a lot of, there’s a lot of people in one way or a wee bit a wee bit nervous about this concept. But it’s the idea that if if you go to the gym Bill, for six weeks, and you just strengthen your good side, your non affected side for six weeks.
Dr. Kenneth Monaghan 1:10:52
If you measure the strength on that side, after six weeks naturally is going to be much stronger. But amazingly, if you measure the other side, it could be potentially 30 40% Stronger, even though you’ve never done anything. And that’s another phenomenal concept as well. And it’s because there’s an overload of electricity that goes between the two sides to the brain.
Dr. Kenneth Monaghan 1:11:14
And so it’s more of a neural effect. But it bought, it’s a very definitely evidenced thing that could work. And what we were working on in our lab was the idea that we might do mer therapy and strengthening exercises at the same time. So we were combining both of those two things. But what for, for practical point of view, a person can buy a resistance band for less than $10 or 10 euros. And in their own home, they can, you know, attach that resistance band to a door handle.
Dr. Kenneth Monaghan 1:11:48
And there’s a very simple way of doing it when enough and they can do exercises on their good side. As long as people realize I’m I’m not advocating that that’s what you do all the time. But if you do that for 10 or 15 minutes as a little package during the day, then you potentially can benefit from that cross education effect. Of course, you have to do all the other things.
Dr. Kenneth Monaghan 1:12:11
And there’s nobody suggesting that you would ignore the you know, the affected side, I think people get a bit nervous, because they feel that maybe, maybe there’s a suggestion that we would just focus on the non affected side. And that wouldn’t make sense whatsoever. But I think during a day in your home, that there’s a place for you to kind of strengthen the good side of your body to try and benefit from those cross education effects.
Dr. Kenneth Monaghan 1:12:36
And I would feel that that type of therapy is what we were saying there, it’s you know, after you’re walking, and you’re stretching, that you’re kind of doing one of these things to activate or energize your brain, I feel that that fits in there. And definitely it’s worth trying for people. And again, very cost effective and a very simple and can be built into a program very easily.
Dr. Kenneth Monaghan 1:12:55
And some of the patients that I’ve used this with absolutely love it, they find it very easy to carry out and you know, they feel like they are strengthening and all strengthening and all exercise is beneficial regardless, and some others don’t take to it as much. But it’s good to have the choice, you know. And so those are the three things that I suppose we’ve spent a lot of time really researching very, very deeply in our in our research lab.
Dr. Kenneth Monaghan 1:13:21
And then I’m bringing those then into a kind of a cost effective, very practical way that they can be done in the book, but more importantly, explaining to people about them and explaining to them in a simple to understand way so that you know, again, if your wife was back in those days, when you came home, that you know machine, I’d say to Bill, you know, there’s a thing called you know, murder therapy, and I’m just going to explain to you in a very easy to understand way, how it’s supposed to work.
Dr. Kenneth Monaghan 1:13:50
And you know what happens in your brain, supposedly, that makes you a better chance of recovery. And maybe we’ll we’ll spend $10. And we buy one and maybe maybe we’ll give it a go. And you see one of the things that I’ve done with the book, and hopefully this is successful is that I wanted to try and merge the book with some digital information or extra resources. So what I’ve done at the end of every chapter, I don’t know, they see when I probably sent you an advanced copy of the book that bill so you wouldn’t have noticed this.
Bill Gasiamis 1:14:24
The QR codes where there.
Dr. Kenneth Monaghan 1:14:27
Yes. So you can see that at the end of the chapter. There’s a QR code and if you scan your phone over that, that then brings you to my website and to a resource where there’s YouTube videos that describe how to do the exercises, theres YouTube videos that discuss in very easy to understand, a way a summary of what’s in the chapters as well. And actually, recently, a friend of mine, his family had a stroke and actually I It was the first time I actually saw this working, that I was showing them the book, and the caregiver was reading it.
Dr. Kenneth Monaghan 1:15:09
And when I gave it to this stroke person, I hadn’t realized that their eyesight or their visual thing was a bit difficult. So they actually weren’t able to read it. And it was, it was actually brilliant than to just put on the videos, which described what I was doing, and they loved it. So I suppose another version would be to, to to record an audio version of the book.
Dr. Kenneth Monaghan 1:15:35
And maybe we’ll do that at some stage. But I’ve kind of tried to bring in these extra resources and hopefully that will build as time goes on, because I’ve set it up so that more worksheets or more documents can be attached. So that you’re hopefully we’re giving a little bit of extra value, you know, for what you’re getting.
Bill Gasiamis 1:15:56
I absolutely love it. As we wrap up. Can you just give us a brief website, tell people where they can find it, where they can buy the book, of course, we’re going to use all the links in the show notes. So people who are listening, who want to go and check it out, they can go to recoveryafterstroke.com/episodes. And we’ll have the show notes there with all the links. But Ken, can you just tell people where they can go and find the book?
Dr. Kenneth Monaghan 1:16:27
Yes, so my publisher is called Book launchers in America. And the book was, it was put up on Amazon, all Amazon sites from last Thursday. Now there’s a little bit so probably most of your audience will be this side of the world. So there’s obviouslyamazon.au.
Bill Gasiamis 1:16:54
Most my audiences are in the US actually that’d be.com I know from experience, whenever somebody is in their country, if they just put Amazon in the search engine, their particular home, Amazon comes up and then you can do a search like that.
Dr. Kenneth Monaghan 1:17:18
So if it’s amazon.com, then essentially just go to Amazon and put in Lights, Mirrors, Action, and the book will come up. There’s three versions of the book, there’s an ebook, and there’s the paperback that I just put up in front of you. And then there’s a hardback cover over it. And yeah, the easiest thing then is just to buy it through Amazon. Now. It’s also available through all larger bookstores as well.
Dr. Kenneth Monaghan 1:17:44
But most of them will probably need you to order the book and then they’ll get it in for you. But I think Amazon is probably the easiest thing to do. Because I know here, you know, most people will have prime and it’s probably doesn’t cost anything for delivery and things like that. And I my own website is www.lightsmirrorsaction.com. And there you’ll find also information about the book and extra resources and things.
Bill Gasiamis 1:18:14
Dr. Kenneth Monaghan. Thank you so much for joining me on the podcast. I really appreciate our conversation and you reaching out. I think your work is fantastic. And I know it’s going to make a difference to a lot of people.
Bill Gasiamis 1:18:27
Thank you once again for joining us on today’s episode. I hope you enjoyed my conversation with Dr. Monaghan, and found our discussion on stroke recovery and innovative therapies enlightening. If you’re interested in my book about stroke recovery, you can get your copy on Amazon by entering my name Bill Gasiamis, or by visiting recoveryafterstroke.com/book.
Bill Gasiamis 1:18:53
To learn more about my guests, including links to their social media and to download a full interview transcript to head over to recoveryafterstroke.com/episodes. A massive heartfelt thanks to everyone who has left a review, whether it’s for the book, or for the podcast. It means a lot to me. Reviews are essential for the success of the podcast and your feedback helps others discover this valuable content making their stroke recovery journey a little bit easier.
Bill Gasiamis 1:19:24
If you haven’t left a review yet, please consider leaving a five star review and sharing what the show means to you on iTunes and Spotify. If you’re watching on YouTube, remember to leave a comment below the episode, like the episode and subscribe to the show on your preferred platform to get notifications of future episodes. If you are a stroke survivor with a story to share, now is the perfect time to join me on the show. The interviews are unscripted and require no preparation.
Bill Gasiamis 1:19:54
Just be yourself and share your experience to help others in similar situations. If you have a commercial product that supports stroke survivors in their recovery, you can join me on a sponsored episode of the show. Simply visit recoveryafterstroke.com/contact fill out the form, and I’ll get back to you with details on how we can connect via zoom. Thanks again for being here and listening. I truly appreciate your support. See you on the next episode.
Intro 1:20:21
Importantly, we present many podcast designed to give you an insight and understanding into the experiences of other individuals opinions and treatments. Protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed all content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis.
Intro 1:20:51
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Intro 1:21:16
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Intro 1:21:40
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Understanding Recurrent Strokes: Causes, Prevention, and ManagementIntroductionEvery year, thousands of people experience recurrent strokes, significantly impacting their health and quality of life. If you or a loved one have suffered from a stroke, understanding the risks and preventive measures for recurrent strokes is crucial. In this comprehensive guide, we’ll explore the causes, symptoms, prevention strategies, and treatments for recurrent strokes.
What is a Recurrent Stroke?A recurrent stroke occurs when a person who has previously experienced a stroke suffers another one. Recurrent strokes are more common than many realize, accounting for about 25% of all stroke cases. Understanding the underlying causes and implementing preventive measures can significantly reduce the risk of recurrence.
Causes and Risk FactorsCauses Previous Stroke or TIA: Individuals who have had a previous stroke or a transient ischemic attack (TIA) are at a higher risk. * Atherosclerosis: The buildup of plaques in the arteries can lead to blockages, increasing the risk of stroke. * Cardiac Conditions:* Atrial fibrillation and other heart conditions can lead to blood clots that travel to the brain.
Risk Factors High Blood Pressure: The leading risk factor for stroke, poorly managed hypertension can double or even quadruple the risk. * Diabetes: Diabetes increases the risk of stroke by accelerating the process of atherosclerosis. * Smoking: Nicotine and carbon monoxide in cigarettes damage the cardiovascular system. * Physical Inactivity and Obesity:* Both are significant risk factors for stroke.
Symptoms of Recurrent StrokeThe symptoms of a recurrent stroke are similar to those of an initial stroke and may include:
- Sudden numbness or weakness, particularly on one side of the body
- Confusion, trouble speaking, or understanding speech
- Difficulty seeing in one or both eyes
- Trouble walking, dizziness, or loss of balance and coordination
- Severe headache with no known cause
Prevention StrategiesPreventing a recurrent stroke involves a combination of medical treatment, lifestyle changes, and ongoing monitoring.
- Medications: Antiplatelet drugs like aspirin, anticoagulants, blood pressure medications, and statins are commonly prescribed to reduce the risk of a second stroke.
- Lifestyle Changes: Adopting a heart-healthy diet, engaging in regular physical activity, quitting smoking, and limiting alcohol intake are essential.
- Regular Monitoring: Regular check-ups with your healthcare provider to monitor blood pressure, and manage diabetes are crucial.
- Medical Procedures: In some cases, surgical procedures like carotid endarterectomy or stenting may be recommended to remove blockages in the arteries.
Treatment and RehabilitationAfter a recurrent stroke, timely and appropriate treatment is vital. Treatment options include:
- Acute Treatment: Immediate treatments to restore blood flow to the brain, such as clot-dissolving medications or mechanical thrombectomy.
- Rehabilitation: Physical therapy, occupational therapy, and speech therapy are often required to regain lost functions and improve quality of life.
- Psychological Support: Stroke recovery can be mentally and emotionally challenging. Support from psychologists and support groups can be beneficial.
ConclusionRecurrent strokes pose a significant health risk, but with the right knowledge and preventive measures, the likelihood of a second stroke can be greatly reduced. Understanding the causes, recognizing the symptoms, and adhering to preventive strategies and treatments are key to managing stroke risk. Stay proactive about your health, and consult with healthcare professionals regularly to ensure you’re taking all the necessary steps to protect yourself.
FAQs1. What increases the risk of a recurrent stroke? High blood pressure, previous stroke or TIA, diabetes, smoking, and heart conditions like atrial fibrillation. 2. How can I prevent a recurrent stroke? Taking prescribed medications, making lifestyle changes (healthy diet, exercise, quitting smoking), and regular medical check-ups. 3. What are the symptoms of a recurrent stroke? Symptoms include sudden numbness or weakness, confusion, trouble speaking, vision problems, dizziness, and severe headache. 4. Can lifestyle changes reduce the risk of recurrent strokes? Yes, adopting a healthy lifestyle can significantly reduce the risk. This includes a balanced diet, regular exercise, quitting smoking, and managing stress. 5. What treatments are available for recurrent strokes? Acute treatments like clot-dissolving medications, mechanical thrombectomy, and long-term rehabilitation through physical, occupational, and speech therapy.
By understanding and addressing the risk factors and symptoms of recurrent strokes, you can take proactive steps to safeguard your health and well-being.
Recovery After Stroke Podcast Interview With Maria SclafaniMisdiagnosed at first, Maria Sclafani shares her stroke recovery journey, emphasizing self-advocacy, rehabilitation challenges, and mental resilience.
Highlights:
01:59 Introduction
03:35 Possible stroke symptoms and diagnosis
13:02 Stroke history and symptoms
17:03 Recovering from stroke and managing fatigue
25:22 Stroke recovery and job security
32:10 Dealing with stroke long-term deficits
38:28 Executive function challenges after stroke
43:22 Work performance after stroke, and eventual resignation
49:37 Experiences with fatigue and its impact on daily life
59:15 Stroke recovery and medical care
1:03:12 Challenges in accessing neuropsychological evaluations
1:15:04 Learning patience and adapting after a stroke
Bill Gasiamis 0:00
This episode of the podcast is brought to you by headbed.com.au Hello everyone. Before we dive into today’s episode, I wanted to share something special. In episode 305 I interviewed Catherine Randabel, the inventor of HeadBed, a product revolutionizing hair salons, especially for stroke survivors. HeadBed provides excellent neck and head support during hair washes in hairdressing salons, reducing strain and promoting better blood flow.
Bill Gasiamis 0:33
For stroke survivors. This means lowering the risk of arterial damage and raising concerns about another stroke. It ensures a safe and enjoyable salon experience. Now I’m thrilled to support a product that aligns with my mission of stroke prevention and safety. In our interview, Catherine explained how HeadBed’s ergonomic design prevents neck hyperextension a common issue increasing the risk of stroke.
Bill Gasiamis 1:02
With HeadBed you can feel confident and comfortable at the salon knowing your health is prioritized. If you’re a stroke survivor, or you know someone who is the HeadBed is a must-have for your next salon visit, check out episode 305 For my full interview with Catherine and learn about how this product can make a difference. Now for those in the United States, visit headbedusa.com to get yours today and enjoy peace of mind at the salon.
Bill Gasiamis 1:34
Now I’d also like to mention my book The Unexpected Way That a Stroke Became the Best Thing that Happened. 10 tools for recovery and personal transformation. It features inspiring stories from 10 stroke survivors and offers hope for those on the road to recovery. For more information, visit recoveryafterstroke.com/book or search for my name Bill Gasiamis on Amazon.
Introduction – Maria Sclafani
Bill Gasiamis 1:59
This is episode 312. And my guest today is Maria Sclafani, who experienced a stroke that was initially misdiagnosed as carpal tunnel syndrome. This insightful episode Maria shares her remarkable journey of advocating for problem medical attention, the challenges she faced during her rehabilitation, the impact on her work performance and mental health and how she managed fatigue while returning to work part time.
Bill Gasiamis 2:29
We also discussed the unexpected support she found in her community and the importance of empathy and understanding towards stroke survivors. Maria’s story is a powerful reminder of resilience and determination needed to navigate life after a stroke. Maria Sclafani, welcome to the podcast.
Maria Sclafani 2:50
Thank you.
Bill Gasiamis 2:52
Thank you so much for being here. Tell me a little bit about what happened to you.
Maria Sclafani 2:56
Yeah, so I worked as a faculty librarian. We call them liaison or subject librarians here. So I was working in Kansas at Wichita State University. And it was in September 2022. and it was kind of the end of September, I think it was actually September 22 because I started September 14, the week before, so I was in my office.
Possible Recurrent stroke symptoms and diagnosisMaria Sclafani 3:35
So I was by myself and I just had numbness in my right my left arm. And it would like, happen for a few seconds, and then go away, and then it would happen again. Go away, I would have been like quite a few times. And I was kind of like, trying to figure out what it was because it was strange, and it never happened to me before.
Maria Sclafani 3:57
Um, so I kind of like I think logically, I couldn’t really accept that it was a stroke because I was at the time 36 And I was in pretty good health and I didn’t have any, like factors or conditions or anything that would lead to the type of strokes that I had. Um, so I decided maybe it was carpal tunnel, because that can cause numbness in the in the arm. Um, so I called my doctor’s office. And they couldn’t get me until the following Monday.
Maria Sclafani 4:36
And I described the symptoms, but I said, you know, I think it’s carpal tunnel. So, I like when about the rest of my day. Like I went and had coffee with my friends. I drove home like I made myself dinner, you know, like, did whatever I normally do. And then I’m that week on Friday. Friday, I had tears a terrible headache. And I actually left work early to go home, because the headache was so bad.
Maria Sclafani 5:08
And I was kind of like, you know, my job entailed teaching and working at the reference desk and helping people. So it was very, like, I guess I would say like, very much, you had to physically be there and be able to function and I was struggling with that a little bit.
Maria Sclafani 5:27
So I was like, kind of scrambling to get my colleagues to cover my shifts at the reference desk, and to like, cover my classes for me, because I didn’t really know what was going on. And so Friday, I went home early, with this terrible headache. And I went to bed probably like 4pm or something.
Maria Sclafani 5:49
And I slept for like 14 hours. And I did call my doctor’s office on Friday, and I think they prescribed me over the phone. A like a steroid. So, you know, I eventually got the steroid and took it the next day or whatever. And then the weekend was kind of strange. Um, even now, it’s sort of like it looking back, like, it doesn’t really make sense.
Maria Sclafani 6:20
But it’s understandable for someone who had like trauma to the brain and was, you know, trying to function I was just trying to do stuff like I normally do. So I was trying to do my laundry and cook and like, I do meal prepping on Sundays. And I couldn’t, like I messed up the recipe, and I couldn’t figure out what I did wrong. And I was really confused about it and kind of like, frustrated and, like irritable.
Maria Sclafani 6:49
And so then, um, went to a doctor on Monday, she examined me, and she diagnosed me as having a pinched nerve in my neck. Yeah, and she did the stroke protocol. So she like felt my arms and legs. But I wasn’t like having a stroke at that moment. You know what I mean? So I don’t know how helpful that was. But, so she referred me to get an MRI of my neck. But I couldn’t get in to get the MRI until Sunday.
Maria Sclafani 7:27
And this was Monday. So I was like, Okay, I’m really struggling to do my job, though. Like, you know, what, can you do anything for me in the meantime, like, I don’t really understand what’s going on here. Um, and she kind of said, if you want some family medical leave paperwork to be filled out, we can do that for you. But like I and I laughed, I was driving around, like, I drove to work, worked a full day, like drove home, like, whatever.
Maria Sclafani 7:57
And I don’t think it was until Thursday that week, that, um, I went home early, like at lunchtime, I got a ride into work with my co-worker, because he lived in my building. And I normally drive like a stick-shift car. And I was kind of like, I don’t, I don’t feel like I can figure that out. So I’ll just get a ride with my coworker.
Maria Sclafani 8:21
So he gave me a ride into work. And then I felt sick, and had this terrible headache again, and asked my another co worker to give me a ride home during lunch. And so then I was in my apartment, and I had a neighbor that I was very good friends with and she kind of came down. She’s in her 60s. And we were just chatting. Um, she was kind of keeping me company because my coworker that drove me home couldn’t stay because it was her lunch break.
Maria Sclafani 8:48
So she had to go back to work. Um, so my neighbor Jesse said, you know, Maria, is it possible you had a stroke? It like, it sounds like a stroke, you know, like, Yeah, have you thought about that? And I was like, I don’t know. And so we kind of had this back and forth where she was like, Well, I think you should go to the hospital. And I was like, I don’t think I need to do that. It’s just a pinched nerve.
Maria Sclafani 9:13
And so then she finally got my, she called my doctor’s office and talk to my doctor, like through the emergency line. Um, and like, actually was able to speak to my doctor and was like, you know, I’m looking at Maria, she’s got drooping on the left side of her face. She’s, and I was having aphasia at that point. Um, so I was mixing up my words.
Maria Sclafani 9:38
And I was slurring my words, also, because I had the droop on the left side of my face. And so the doctor just said, you know, take her to the emergency room. Um, so, I call my parents and I was like, very upset. I was also crying a lot during this period, because this was like, basically it lasted eight days from like, A Wednesday to a Thursday, if
Intro 10:02
you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like, how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, and doctors will explain things. But obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 10:26
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recovery after stroke.com where you can download a guide that will help you it’s called seven questions to ask your doctor about your stroke.
Intro 10:45
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery, head to the website. Now, recovery after stroke.com and download the guide. It’s free.
Maria Sclafani 11:04
So I was like very, like emotional. So I call my parents. And they were at the airport. And they were gonna get on a plane to go to upstate New York for a wedding. So I said, I don’t know what’s wrong with me. I can’t do anything. So my dad said, If you can’t do anything, go to the emergency room.
Maria Sclafani 11:25
And they had to then like get their bags, they just check their bags, and they had to get them back and then get waitlisted for flights to Wichita to come out and see me because they live in Colorado. So I finally made it to the emergency room. My neighbor Jesse drove me. And when I moved to the emergency room, you know, waited around for a bit and then they did when they did the MRI.
Maria Sclafani 11:52
They were like, yeah, so you’ve had multiple strokes. Um, there’s multiple, I think they call them infarct like, like little, you know, spots on your brain. And there’s one that seems a lot older than the rest. But it looks like you’ve been having them for about eight days, if you’re saying that the symptoms started on Wednesday.
Maria Sclafani 12:14
So they determined that they were ischemic strokes. And then when my parents came, my mom told them that her family has a history of Leiden factor five, which is a blood clotting disorder. So I mean, I think that they were like, oh, like we figured it out. So they tested me for it, but I don’t have it. And my mom doesn’t have it, just her two brothers have it. So they rolled that out. And then I ended up because I was at one hospital.
Recurrent stroke history and symptomsMaria Sclafani 12:47
But they actually transferred me like from the emergency room to another hospital that had a stroke center. And so I think I got better care there than I did you know, in the emergency room. So yeah, it was it was better. So I was there for three more days. Um, they did a lot more scans and tests, they test my like, they scan my legs to see if I had any blood clots in my legs.
Maria Sclafani 13:14
They did something called the T E, where they went, they stuck something down my throat a camera, and then they looked at the top of my heart to see if there were any holes, which there were not. So they ruled out like they could rule out that but then they also gave me an implant, a heart loop monitor that’s just in my chest kind of under the skin.
Maria Sclafani 13:40
And it’s like about this big maybe it’s a piece of metal and it just tracks my heart rhythm to check for atrial fibrillation. So it syncs to like a cell phone, and it alerts the clinic if I have any atrial fibrillation, but I’ve had enough for two years, and I haven’t had any. So that doesn’t seem like a factor. Um, so yeah, then I I just had to, like recover. You know,
Bill Gasiamis 14:12
tell me about let’s go back to the very beginning, the first self diagnosis that you made. Did you have any understanding of what stroke was experience of anyone having had a stroke beforehand? Where that kind of made you rule it out? Or do we just guessing and thought that it was baby carpal tunnel, and did you know anyone with carpal tunnel?
Maria Sclafani 14:41
Well, so the interesting thing about the stroke history is that when I was in college, my it was my sophomore year of college. I lived in a dormitory that was like a house. It was like a very large house. It had been like a school for girls or whatever. So, um, there was a girl, there was a woman in my dorm who was about to graduate, she was a senior. And she lived on my floor. And she actually had a stroke, the week of graduation.
Maria Sclafani 15:16
So, um, it was a brainstem stroke, caused by a blood clot. And she actually was on the floor of her room. She collapsed. And she was making automated, like, sort of strange sounds like I think sounds that the body was admitting that I think when she wasn’t actively speaking, it was just something that was happening biologically. So we, we were all we all spent like a few hours trying to figure out what’s going on.
Maria Sclafani 15:48
We tried to get into her room, we couldn’t get into a room. And later, we found out that that was because she was in front of the door. But we didn’t know that. And then we like, called her room and she didn’t pick up and then there was a balcony on the roof that we were not supposed to, to. But we did, of course. So we went out on the balcony, walked across the balcony and looked in her windows, but her curtains were pulled down.
Maria Sclafani 16:15
So we ended up calling campus, I think they were called campus safety, but like whatever campus police, and she had to break into the room through the balcony through the window, she had to use like a knife to cut through the screen and climb in through the window. And that’s when she found Maggie. And then like the ambulance showed up. And it was like a whole mess because I guess the ambulance people locked their keys in the ambulance.
Recovering from stroke and managing fatigueMaria Sclafani 16:43
So it was a long time. Before they were able to actually get her in the ambulance. This was in Massachusetts, it was in Western Massachusetts. It was a long time before they could get her like to the actual like emergency like the hospital. So then they also didn’t know what’s going on because she was young. She was you know, 2122. And she was also they kept asking us like after she was found there were for like four of us maybe.
Maria Sclafani 17:14
And they so they were interviewing all of us and asking like does she do does she drink? Does she use drugs, you know, illegal substances, any of that. And we were like, No, she doesn’t even drink. She’s sober. And she’s really healthy. She used to be on the crew team. And like, she wants to be a vet.
Maria Sclafani 17:33
And like she’s planning on going to that school after this. So like, she’s not like, you know, experimenting with like drugs or anything like that, you know, we’re pretty sure that that’s not the case. And I you know, I only knew her for one or two years. No, one year, I only knew her for one year, my sophomore year
Bill Gasiamis 17:54
that she had a stroke. And that was your first understanding what stroke looked like you compared yourself to that situation. And you thought that you don’t fit that situation? Yeah, because
Maria Sclafani 18:07
it was sort of it was very scary for all of us at the time, because we like couldn’t comprehend like that these things just happen to people like regardless of whether they’re good or bad, or they do good things or they do bad things like or they do drugs, or they don’t do drugs, like medical things just happen to people.
Maria Sclafani 18:27
And so I feel like we were all like, but she doesn’t drink or she doesn’t even drink and she doesn’t do drugs. And you know, she’s so healthy. And she’s got a whole plan for her life like after this. You know, this is not good. It’s not good timing. She’s about to graduate from college.
Maria Sclafani 18:43
And so what they additionally eventually figure out that it was, you know, a brainstem stroke. They were trying to figure out if there had been any indicators beforehand. And the only one was that she had had soreness in her jaw. She’d been complaining about that. And that was it. I mean, she then she collapsed on the floor of her dorm room.
Bill Gasiamis 19:05
Yeah. So your, your stroke your whole situation. After eight days of trying to work it out, you end up in hospital, how do they treat it? What’s the path forward after those first eight days.
Maria Sclafani 19:21
So I was referred to a neurologist. And I was referred for physical therapy, occupational therapy and speech therapy. And I actually was able to go to a rehab clinic in Wichita, where all of the physical therapy all of the therapies were together in one place. So it was residential, like partially residential.
Maria Sclafani 19:45
So some people lived there, but like I was able to go to one place and then my speech therapist, my physical therapist, and my occupational therapist could all like, communicate with each other and they all like shared information about me and like could come up with A game plan.
Maria Sclafani 20:01
So I did, I did that after, unfortunately, my mom chose to stay with me in my apartment in Wichita to help me, um, because we weren’t really sure if I could legally drive. And we didn’t really get clear answers from anyone. They told us to ask the occupational therapist, an occupational therapist said, I don’t know, you have a driver’s license.
Maria Sclafani 20:27
So I don’t know, like, so I had those therapies. For a few months, I had to go on family medical leave from the university, um, for like, a life threatening, you know, thing. And so I went down to working part time. Um, so four hours a day.
Bill Gasiamis 20:58
What was that, like, going and working part time? And how did you get through it? Um,
Maria Sclafani 21:04
well, it was. So the thing about this is, you know, my parents were there, of course, and they were helping me that according to them, they were trying to get me to relax, and just like, deal with the fact that I have had multiple strokes. And you know, they’re cryptogenic. At that point, they didn’t know what the cause was. And I just had rehab.
Maria Sclafani 21:29
And I had a good reason not to go back to work for a while. But I wouldn’t do that I kept trying to get into my email, and then I would get the password wrong. And I would like lock myself out of the email. Because I had issues with typing and spelling, I’m, so then I would go to zoom meetings.
Maria Sclafani 21:53
And I would say, like, 50% of the time, I could follow along, but it was, it was pretty tricky. I didn’t like speak, I didn’t communicate or like contribute anything, but I just wanted to kind of be in the loop. Because it was October by this point. So it was a busy time in the semester.
Maria Sclafani 22:10
So I was like, kind of trying to juggle everything. Um, I mean, it took like a whole like two hours, to just figure out how to like, set up my out of office message on my email. My dad had to, like, help me and we had to figure out like, how to do it. So that faculty who were emailing me for help with stuff like found, you know, knew that I was on leave and not available and knew who to contact. But I was very insistent, on going back to work.
Bill Gasiamis 22:45
I remember my own condition being in that situation where you’re trying to type an email after, for me it was after the second major bleed, and then having to write an email for work and sitting in front of my computer and struggling probably for what was hours, hours and hours just to write a few lines.
Bill Gasiamis 23:06
And then not being aware of the time that it had taken me that that I had spent sitting there trying to write this email, and then I was getting nowhere. It was pretty intense to
Maria Sclafani 23:21
pretty much like, I was sort of like that, that time feels fuzzy in my memory. You know what I mean? Like, it’s not clear, it was all sort of like. So I think the benefit of working part time was that I just worked like a morning, like nine to one or something like that.
Maria Sclafani 23:47
And then I usually had, like therapies, I had multiple medical appointments. So then I had like, the whole, I could do those in the morning and go to work in the afternoon, or I could go to those in the morning and you know, whatever. I can sort of work it out either way. And sometimes I would like go into work for two hours and then leave and then come back and like do the other two hours.
Bill Gasiamis 24:14
Was fatigue an issue?
Maria Sclafani 24:16
Yeah. And the neurologist didn’t tell me about that. No one at the hospital told me about the fatigue. It was actually my physical therapist that said, Have you been taking naps? And I was like, why? And she was like, it’s important to take naps, you know, recovering from strokes.
Maria Sclafani 24:39
You’re gonna have a lot of fatigue. And I was just like, I think my mom was with me, and we were both just sort of like, Oh, we didn’t know that. And I had been trying to power through the day. Because in my mind, it was like, Well, I don’t want to take a nap that will disrupt my sleep cycle.
Maria Sclafani 24:57
I want to like you know make it through the day and go to bed early. But then I started taking the naps and working like a half day sort of allowed for that type of thing. I could take a nap at, like 3pm or something. And that really helped. But I was I’m surprised that it was a physical therapist who asked.
Recurrent stroke recovery and job securityBill Gasiamis 25:22
Yeah, that was a lot of people don’t know to tell you about that kind of stuff. I don’t know why, but it’s not in the doctor’s part of the process to tell you about when you go home, these are the things you’re going to experience, I really don’t think they know what stroke survivors experience.
Bill Gasiamis 25:40
And it’s usually the rehabilitation people who know that because they try and rehabilitate you, and they see what you can and can’t do. And they see how quickly you might get wiped out after a physical exercise or some exertion in some way. So they see it, and then they have to deal with it.
Bill Gasiamis 25:57
And then they’ve got to kind of set you up to succeed. So helping you succeed. One way to do that, to help you succeed is to encourage you to sleep more during the day, it’s just to have those Nana naps, we call them here in Australia, or catnips. Yeah,
Maria Sclafani 26:14
yeah, um, those really helped with my recovery, and I would say I did those for a few months, because I went back to work. I’m gonna say, mid October, so like, probably four weeks after I had my strokes, full time.
Bill Gasiamis 26:38
Part time, part time again. Yeah. Yeah. I
Maria Sclafani 26:41
was very anxious to go back to work. But I also couldn’t really, you know, so my work agreed to let me work part time.
Bill Gasiamis 26:52
And you were 36 years old at the time? Yeah. And what was normal life? Like before the stroke? What did your day consist of? Were you in a relationship? Do you have a family? How did you go about life?
Maria Sclafani 27:13
Yeah, well, um, so I lived in Wichita for five years, I moved there in 2019. And I became a librarian a little later. So I was an adjunct professor of Writing and Rhetoric for five years at CU Boulder. And there’s no job security when you’re an adjunct at all. I mean, they literally don’t care if you, if you don’t come back the next semester, they actively were telling us at some point, like to take other jobs if we were offered them.
Maria Sclafani 27:48
So I was like, this is not, this is like a dead end, this isn’t going anywhere. For me, there’s no job security here. You know, I don’t have any, I didn’t have health insurance, which is why I stayed at that job. Um, you had to be all you had to teach two classes to qualify for health insurance.
Maria Sclafani 28:06
And a lot of universities in Colorado, it’s that you have to be teaching a full course load. So for classes to qualify for health insurance, so it was a big incentive for me, because it was also like university health insurance, it was good health insurance. Um, so I did that for five years. And then I was trying to think about what else I could do that would offer me more security. And so I figured out that I could go for two years, get a library science degree.
Maria Sclafani 28:36
And then I could work as an academic librarian, and I could do what I was basically already doing, which is teach students how to do research. So my department at CU worked really closely with the library. So a lot of principles of library instruction were built into the curriculum of the classes that I was teaching.
Maria Sclafani 28:56
So I was already familiar with them. So it was like a very easy transition. So I did that for two years 2017 to 2019. And then I, you know, graduated and I had a lot of job interviews, and I went to a lot of places and considered a lot of jobs. But then I eventually accepted the offer from Wichita State, and I went there in 2019.
Maria Sclafani 29:22
So I would say, you know, it was a little rough, in 2019, like 2019 to 2020 because that was leading into the pandemic, so I didn’t really have any friends other than my co workers who were all very nice people and they still are very nice people. You know, but I didn’t really like know anyone.
Maria Sclafani 29:44
I befriended my neighbor, Jesse, who ended up taking me to the hospital. And I was kind of like, just starting to like, join book clubs and like, go out a little more and explore when We shut the whole university shutdown March 2020.
Bill Gasiamis 30:06
Yeah, so how did you guys go about, we still employed in those times where you shut where the your workplace was shut down, we still able to be employed.
Maria Sclafani 30:18
So it was, it was pretty unusual in the state of Kansas at a university. For us, we stayed employed, and they didn’t. A lot of universities, I forget what they call it, but it’s like, they dock like 10% of your pay or something. Like you don’t work for a week, and then they can like not pay you for that week. So it works out for them.
Maria Sclafani 30:44
And a lot of people salaries are getting cut. So our salaries stayed the same. And I’m the administrators at the university, like the dean of the library, that administrators all agreed to just take two weeks off in the summer, so that they could save the university money, and that kind of balance things out.
Maria Sclafani 31:04
So we were working remotely, from March until May, the library was closed, like, not open to the public. You know, like, we were just fully remote, and then in May 2020, they insisted that we open.
Bill Gasiamis 31:24
Okay, so in May 2020, you’re back at work, that we
Maria Sclafani 31:29
actually continue to work remotely. So as a faculty librarian, I was able to, I’m able to do my job, I was able to do my job, like from home, like I could do emails from home, I could do instruction from home, like via zoom. And I could, we could do chat reference, which is basically you know, how we provided reference services during the pandemic was just virtual reference.
Maria Sclafani 31:55
And we could, we could do that from home too. So we kind of took these like four hour shifts, where like, you’d be on reference from like, nine to one, and then someone else would be a reference from one to five. So that was a big chunk of time, and you were just home.
Dealing with stroke long-term deficitsMaria Sclafani 32:10
So like, it was, it was fine. Um, so there were people that had to come into the library and work staff who had to physically be there. But we didn’t. And I don’t think we really went back until 2021 is when we were starting to go back in person.
Bill Gasiamis 32:34
Okay, so that didn’t really interfere with your stroke recovery or accessing services when you did have the stroke in 2022. What month was that? September, September. So it was everything kind of back to normal, work-wise. And pandemic wise.
Maria Sclafani 32:53
It was, but you know, it’s interesting, because, um, I was wearing a mask at work. So people couldn’t see that I had the left cheek was drooped. And we were having our meetings on Zoom, still are like department meetings, I guess we would have them like once every other week or whatever.
Maria Sclafani 33:14
And we were still doing those remotely. So like, people weren’t physically seeing my face in person, you know, it was still, like, removed a little bit. Um, so because we and I, we were all kind of wearing masks and being careful. That was 2022. I mean, because it just continued. It continued. So I mean, we just had to keep wearing masks, because the university insisted that we should open. Was
Bill Gasiamis 33:44
that an issue? Because then your colleagues didn’t quite understand what you were going through. And it was difficult for you to navigate that.
Maria Sclafani 33:52
Yeah. And, you know, it was interesting, because when I was in my apartment, and I was just like, with my neighbor, like, I didn’t wear a mask, because it was just the two of us. We weren’t like in a public, you know, in a library that was open to the public, where there were like, hundreds of people every day.
Maria Sclafani 34:09
So like, that was when she that’s when someone actually noticed when I wasn’t wearing a mask. And when I was with someone, and I was like, you know, sort of close. Um, my coworkers kind of knew something was going on, because I was like, you know, bursting into tears in a Zoom meeting and saying, I can’t do I don’t know what’s going on with me, but I need your help. I can’t do my job and all this stuff.
Maria Sclafani 34:32
So they knew something was up, but I told them what the doctor told me. I said, you know, Doctor says, I have a pinched nerve in my neck. So I guess this is what, this is what that looks like. So I think that they were concerned, certainly, but they didn’t. They were like, well, she’s young. You know, how bad can it be?
Bill Gasiamis 34:58
Yeah, How do you find people react to you? When you say you’ve had a stroke? Or a multiple strokes? How do they respond? People that don’t associate? Younger people with strokes? How do they deal with that?
Maria Sclafani 35:18
Usually, they’re surprised. They say, You’re so young, or they say you don’t. I didn’t, I didn’t have I would say I had some drop foot on my left foot afterwards. And the occupational therapy and physical therapy was helpful for that. And I had like weakness in my in my left arm. Um, but like, other than that, I don’t have any physical I guess, indicators or physical, whatever you would call them.
Bill Gasiamis 35:52
Deficits After Effects. Yeah. deficits, and therefore you don’t look like somebody who’s had a stroke, as well as a you’re too young, but you don’t look like you’ve had a stroke. And people just can’t connect the two.
Maria Sclafani 36:07
Yeah, so I would say there’s a lot of surprise. Usually elderly people, they have had strokes, or they know someone who’s had a stroke. And so they understand a little bit more. But I would say people that are young, under 50. They tend to be very surprised, and there was a woman I actually met, and I was having conversation with her in a bookstore.
Maria Sclafani 36:33
So it was just an informal conversation about books. Um, and because she came in looking for one book, and then habit and I told her, You know what, you should really get this other book by the same author, you know, so we started talking, and I said, you’ll probably be surprised by this.
Maria Sclafani 36:49
But I actually had multiple strokes. And that’s why I’ve moved back to Colorado to be near my family. And she said, I actually wouldn’t be surprised, because she said that when she was in college, one of her close friends had a stroke. And he was a runner. So it was completely out of the ordinary, and he was very healthy. And then he like collapsed one day.
Bill Gasiamis 37:13
Yeah, so it is common, but rare for younger people to have a stroke. And other people who are, have been luckily enough to escape stroke. And they’re as old as you were, or even older, might be surprised by that, especially if you don’t look like you’ve had a stroke stroke. Looks like people can’t walk properly.
Bill Gasiamis 37:36
It looks like there’s a problem with somebody’s arm. It looks like there’s a problem with the way their speech or their speak or the way that their mouth looks. And it looks like you’re recovered quite well. Do you have any ongoing long term deficits that you’re still overcoming or you’re working to overcome?
Maria Sclafani 37:56
Yeah, so I did actually leave my position at the University at the end of January. So technically, like, February 2, or something, but like, end of January, beginning of February, I left my position. Because I, I was going through a major depressive episode, which is probably like linked to brain damage from the strokes.
Executive function challenges after strokeMaria Sclafani 38:20
But they were just throwing all sorts of meds at me and we couldn’t get good mental health care in Wichita in Kansas at all. It’s just was terrible there. Um, so I decided to move back to Colorado, like, you know, without a job to move back to Colorado, just to be near my family. And I’m living with my parents right now. Um, and what was your question? Yeah, I think I answered your question.
Bill Gasiamis 38:48
I’m still deficits. Yeah,
Maria Sclafani 38:51
so executive functioning. So that was very damaged in the strokes. And I did go to see a neuro psychologist, and I actually went to see her.
Maria Sclafani 39:03
I requested that I’d be referred to a neuropsychologist after I listened to your podcast, because you interviewed someone who I want to say was from New Zealand, and it was a woman and she said that when she went to see her PCP, and there was like a history of stroke in her family, or it just it seemed likely that she’d had strokes or a stroke.
Maria Sclafani 39:26
She said, But I’m talking funny and her Her doctor said, but don’t all Kiwis talk funny. I think I remember. He felt bad about that and apologized to her and stuff. And I was like, that’s very similar to what happened to me because I asked my doctor, if it was possible that I had meningitis because of the terrible headache, and that’s just all you hear about meningitis.
Maria Sclafani 39:55
I mean, it’s mostly with college students, but like, you just hear that they have a terrible headache. And then they go to bed and they don’t wake up. So I was very, I think, understandably paranoid considering what had actually happened. But I was very paranoid. And I asked her if I had meningitis if it was possible. And she basically said, No, you would be like, a lot sicker than you are. If you had meningitis.
Bill Gasiamis 40:19
Yeah, it’s a little bit more debilitating, because I think it affects the whole brain because the infection makes the brain swell, and then causes real major challenges really quickly.
Bill Gasiamis 40:32
So with executive function, according to Google search, the phrase executive function refers to a set of skills, these skills underlie the capacity to plan ahead and make goals, display self control, follow multiple step directions, even when interrupted and stay focused, despite distractions, amongst others. So does that description describe the things that you’re challenging that you’re finding challenging to deal with?
Maria Sclafani 41:08
Yeah, so I think my job required a lot of executive functioning. My title was actually the coordinator of library instructional services, which is a long title. And so I had to coordinate a lot of things. I coordinated a workshop series, I coordinated instruction for a first year writing class, the librarians would teach one library session for all of the sections of that class.
Maria Sclafani 41:35
And I was responsible for creating the lesson plan and doing an assessment of the students and all of that stuff. So I was really struggling when I went back full time, in this last fall, so fall 2023. So I went to the neuropsychologist, she said, You’re clear to go back to work, she did cognitive assessments of me.
Maria Sclafani 42:00
And she said that my limits were in my executive functioning. But she felt that as long as my job didn’t require me to be able to respond to things quickly, her example was like an air traffic control person. Like she was like, if your job was doing like air traffic control, you wouldn’t be able to go back to work. But your job does not require that kind of like, you know, split second thinking, so I think you should be fine.
Maria Sclafani 42:29
And, you know, I think I was just in the fall in like, September, November, October, I guess, um, I was like struggling with things that I didn’t struggle with before my strokes. And I honestly think that I was in denial for quite a while after I had the stroke. So like, I knew I’d had them. But like, I was very determined to not let them affect my life.
Maria Sclafani 42:57
Like, I wanted to go back to how things were before. And my speech therapist and I actually stayed in speech therapy for a long time, I think I was in speech therapy for six months, from like, November, October until April. And she sort of tried to broach this topic with me of like, well, you know, you’re telling me about your job.
Work performance after stroke, and eventual resignation
Maria Sclafani 43:22
And it sounds very demanding. And I don’t know, if it’s something that you can continue to do with the limitations that you have, you have limitations with attention, focus, you know, like, remember memory, like all of these things that, you know, we’re working on, it seems like that would affect your ability to do this job that you have. And I think I just found that that was in fact true. I mean, she was right.
Bill Gasiamis 43:53
But was that evidence, evidence that it was true? For example, were your colleagues commenting on your ability to carry out your work tasks? Was anyone saying she’s not pulling her weight? Anyone giving you any feedback whatsoever?
Maria Sclafani 44:10
No, I think and I don’t know. Um, so what I do know is that I was dropping the ball on a lot of things. So I would write myself a to do list. And I would write, like, you know, email, so and so or, like, download these sheets, these responses and email them to faculty. And then like, a week later, I would look at that, and I’d be like, Oh, I didn’t do that.
Maria Sclafani 44:34
I’ll do it later. And then a week later, it was just the same thing over and over and over again. And you know, then it’s like November, and I actually took FMLA leave to take to stay at home because I was not functioning. And I was like, it’s how was it November and I haven’t done this thing that I was supposed to do in September, like, what happened and so yeah, it was sort of like See, the signs were there.
Maria Sclafani 45:02
But, um, I think that because I was a very reliable and responsible employee, um, everyone just assumed I was still fine. Because I came back to work. And I said, I was fine. And I, you know, I spoke to my supervisor, and I said, because I had to ask them, to allow me to work part time for the rest of that year 2022.
Maria Sclafani 45:27
So I actually worked part time from when I got back to work in October, until May. So the rest of the semester, and, you know, I said, I want to get this cognitive assessment done, you know, and make sure before, before I actually go back to full time, and he said, that was fine.
Maria Sclafani 45:46
So I did that. And then, you know, when we spoke later, he said, you know, Maria, you’re not one of those employees that, like, people are continually saying that you’re never here.
Maria Sclafani 45:59
You know, that is a, that can be a problem with some librarians and I have had, you know, co-workers and colleagues and stuff that that has been an issue with them, or they’re just never in their office, and faculty come looking for them, and you don’t know where they are, and all of that stuff.
Maria Sclafani 46:16
And because I was, I was still coming every day. Even though I went back to working part-time. In December, I think I went back in December, and I went back to work working part time, like, I was still coming every day and like, emailing my supervisor and keeping him updated about things. I
Bill Gasiamis 46:35
think, notice your absence, and therefore, they didn’t really clue on to the fact that you were not at your best performance. Performing the best, you probably knew that more than they did, you may have had comparison of your previous capability, and then your newest capability, and you’re going in with something not right there. Yeah,
Maria Sclafani 47:01
and I think I thought that, if I like worked hard enough, I could fix it. Like, I could get back to the way it was before. So there was there was a lot of denial happening. Um, and it was actually, you know, me, I didn’t get fired.
Maria Sclafani 47:20
You know, it was me that chose to leave my job and resign, um, you know, and I was very, like, conflicted about that at the time, but I was like, Okay, I can’t continue to do this job anymore. This was in early 2024. So like, January, I was like, I can’t I’m not doing my job right now.
Maria Sclafani 47:43
You know, and my coworkers, they’re all have taken on some of my responsibilities, my duties, like, and we were working on changing my job description, so that, like, my duties would change so that my job was more manageable for me, which I appreciate very much. I think Wichita State was very, what’s the word I want? accommodated? Yes, thank you.
Maria Sclafani 48:08
Um, they were very accommodating, they worked really well with me on things. So that was all happening in January. And I was like, at this point, I’m not really even doing my job anymore. My coworkers are doing my job. So it’s not like, I’m doing it. And then if I leave, there’s someone to do it. They’re already doing it.
Maria Sclafani 48:29
So why am I here? You know, I don’t know. And I was, I was pretty rough. By the end, by the end of January, I was really not functioning. I was on mood stabiliser. Um, and, you know, subsequently after going off of it, things changed a lot for me. And the psychiatrist, doctor who prescribed that medication said, you know, I think maybe it wasn’t, wasn’t good for you. Like, yeah, maybe it wasn’t good for me.
Maria Sclafani 49:03
Um, because they, I think that they looked at these issues, I was having these impulsive decisions, and like, issues with coordinating my schedule and all of this stuff. And they were like, Oh, this is you know, she’s she’s not being consistent. There’s some kind of mental health issue here. So they were trying to treat that without really considering what the how much was caused by the stroke. You know what I mean? Strokes plural.
Experiences with fatigue and its impact on daily lifeBill Gasiamis 49:37
They underestimated the possibility that stroke was causing mental health issues, or was the kind of thing that needed to be resolved or to help support you in that space so that you could be better mentally. It’s not necessarily I woke up and I had mental health issues.
Bill Gasiamis 49:59
There was another cause, but sometimes people in those types of spaces don’t look at, they look at the symptoms, right, and they don’t look at the cause. And then they treat the symptoms, here’s a medication, and hopefully the symptom that you’re feeling, or the thoughts that you’re having, or the challenges that you’ve got will go away, if we give you this thing, and then it gives you a temporary reprieve from the symptoms, but it never has actually dealt with the root cause. Yeah,
Maria Sclafani 50:34
because I really felt I felt very flattened. Like, I didn’t feel like I had a lot of energy, or motivation, I couldn’t even like really be expressive with my face at some point. Like, I was just monotone. And like, because it felt like, and I would talk to people, and I could tell, you know, like, that they were expecting something different from me, and I couldn’t give it to them.
Maria Sclafani 51:01
And I was like, I don’t, it’s like, it’s like I’ve run out of like a bat have run out of battery, like I don’t have anything left to like, be animated, and like, you know, make eye contact with you and do all of these things that would indicate to you that I’m listening and that I’m, you know, paying attention and active.
Maria Sclafani 51:21
And so, you know, at that point, I was just totally depleted. And I would say I was barely speaking. I mean, I would answer questions when I was asked, but I’m a very talkative person. And I was like, barely speaking,
Bill Gasiamis 51:35
you described that really well, running out of battery, a lot of stroke survivors use that term, to describe what happens when they’re fatigued. And I’ve even seen an image, you know, some stroke survivors have typed an image with, you know, the battery indicator that shows, you know, five green bars, and then three of the green bars are missing, and there’s only two left.
Bill Gasiamis 51:59
And then it’s like, I don’t, I’m conserving the rest of the energy of that barrel to get through the rest of the day. And it’s only midday. So if you’re expecting me to talk or respond or laugh, or laugh, I’m probably not going to be and it’s nothing to do with you. It’s just got to do with how I feel. But people who don’t have been through what we’ve been through, don’t can’t grasp it that don’t get it. Yeah,
Maria Sclafani 52:26
and that made me like, not want to be at work. And I mean, working part time helped with that. But, um, the way things were at Wichita State was that they wanted us in the library, who were those of us who worked in library to still be in the library, five days a week, in person. Yeah, the extent that we could. And that is not the case at other academic libraries.
Bill Gasiamis 52:51
Uh huh. And you’re dealing with details that are pretty full on like people want to know, you want you to direct them to a piece of literature that is related to something that they are trying to get to the bottom of, or to research. And that requires a lot of brain energy, as well as that you’re doing that for multiple people that they wouldn’t be just for one person.
Bill Gasiamis 53:18
And then that would be you know, I remember what it was like just trying to write my book, or I remember the struggle of sitting there and trying to find data to come to support my statements, and how long and how difficult and how arduous that was. And I’d never gone to university or studied for a degree or anything like that.
Bill Gasiamis 53:48
So I didn’t understand the extent of the effort that you had to put in. But I went, it took and that’s what took me a good part of two years to do. Like it took me two years to get to the point where I was able to gather all the information on this book that I was writing, and it and I found that I did that.
Bill Gasiamis 54:13
If I wasn’t working constantly for two years, what I was doing was picking my moments so that if I had a good two weeks of energy, I would work as much as I could and get as much done in that two weeks because then I knew there was another three or four weeks coming up when nothing was gonna get done.
Maria Sclafani 54:32
Yeah, yeah. And you know, what was interesting for me after the strokes was you know, why went back to work part time. But my job was very much I remember speaking to a co worker at one time and I was like, it’s tough because like, I have, you know, permission I am allowed to be here half time, um, and we’re in the university figured out a way to get me paid For those other four hours that it wasn’t, because I was out of paid leave at that point.
Maria Sclafani 55:07
So there was a program for the state of Kansas that I could apply for, and I did. And they would allow me to work for four hours a day, and the other four would be covered. But like, I was like, okay, but like, this job, like, it doesn’t reduce the amount of work I have, you know, like working for us a day doesn’t change the fact that, like, I have other stuff I need to do.
Maria Sclafani 55:33
And I just not doing it, you know, so that was kind of hard, like, I was getting emails from faculty and requests to do instruction and all of this stuff. And I had to kind of like, figure out what to prioritize, like, what I had energy for. And I actually, I really appreciate my co workers at Wichita, because every time I ask them for help, they helped me. And so I actually team taught, like, you know, two of us teaching maybe three or four times in the spring semester.
Maria Sclafani 56:07
So that would have been 2023, in the spring, because I had these classes scheduled that had been scheduled in the fall. And I, you know, couldn’t, I didn’t feel confident enough teaching them on my own. Because teaching is very much like you can’t hide like, you’re there and the students see, and if you don’t know the answer to something they can tell. And so yeah, and so I had a co worker teach with me each time that I taught.
Maria Sclafani 56:42
And that really helped me feel like okay, this is manageable, and they would also kind of like, maybe step in or like answer questions, or, you know, kind of supplement add to, you know, stuff that I’d missed. And that was helpful. But, um, so in, technically, the field that I’m in is library, and information science. Um, and I don’t think a lot of people really know what that is. Especially not in America.
Maria Sclafani 57:14
I mean, when I tell people that I’m a librarian, the first response is like, Well, what do people even read books anymore? Like, do they even need libraries? And I have to be like, they they do they do read? And people need libraries, and they use libraries for things other than reading, you know?
Maria Sclafani 57:38
Yeah, so then people are surprised that there’s actually programs, there’s no library schools, that I, you know, I would sort of say, Oh, I went to library school as in, like, I went to a university and got a graduate degree in Library Information Science. And they’re always like, surprised by that. And I’m like, What did you even study? And it is about, so one field is information behavior. So that’s how people seek out information.
Maria Sclafani 58:08
And there’s lots of like, models, I have a whole textbook of models of how people seek out information, because it’s a very popular field. Um, and so part of that is information seeking. So like, you know, when someone comes into the library, they’re seeking information, you know, how do they how do they go about doing that? So one concept that actually is pretty popular is the concept of serendipity.
Maria Sclafani 58:34
So that’s like, when faculty usually do this, I would say, students don’t usually go into this to x to get books. It’s usually faculty or grad students, they’ll go to retrieve a book. And they want to have the call number, the Library of Congress call number, which is what we use in academic libraries.
Maria Sclafani 58:53
And they want that they want that specifically, they don’t want to put in a request and have that book pulled for them, which they can do. I did it all the time. You know, I had books pulled for me, but they want to go in and they want to look at all the books that are cataloged, you know, like shelved next to that book, because they’re going to be about the same topic.
Bill Gasiamis 59:15
So they have an idea for a book, because there’s perhaps a piece of literature that they’re familiar with by a particular author. And then they know that if I go to that particular author, to the left, and to the right of that author, there’s gonna be a whole bunch of other authors that talk about the same type of topic.
Maria Sclafani 59:37
Yeah, and so that’s called, oh, sorry. That’s just an alarm on my phone. Um, that is, um, that’s like the idea of serendipity. Like, it seems, at least to you when you’re going in and looking at these call numbers that you find books like, serendipitously, like just there is but it’s not, you know, it’s not really serendipity because it’s actually, like they’re, they’re placed next to each other for a reason.
Maria Sclafani 1:00:07
Because they, you know, belong in that certain section. So, I, as a librarian was like, very fascinated with how I, as a stroke survivor had to figure out how to find information about strokes.
Maria Sclafani 1:00:26
Like what to do. I mean, I, you know, I was lost, I think a lot of stroke survivors are lost, like you have your physical therapist or occupational therapists, whoever, you know, your rehab people are, but like, I mean, my neurologist was not very responsive. To put it, like, politely, he tried to cancel an appointment once, because he wanted to go on vacation.
Bill Gasiamis 1:00:54
Your neurologist wasn’t very responsive to your need for follow up for information. What was?
Maria Sclafani 1:01:04
Yeah, so in the appointments, if one was only last 15 or 20 minutes, and I would ask things like, Am I more likely to have another stroke seems like something I should be concerned about. And he would say, you’re more likely to have a stroke now than you were, before you had your first stroke.
Bill Gasiamis 1:01:28
To stick with somebody who’s had an ischemic stroke is very much more risk of another stroke after the first one. Neurologists tend not to do a lot of the kind of work that we hoped they would do a lot of shock survivors go back to neurologists for information, and they don’t get a lot of satisfaction.
Bill Gasiamis 1:01:48
And it’s not because the neurologists don’t have, I think they just go, we go to them for the wrong reasons. Usually neurologists work with a medical team, they can look at a scan, and they can say, this is what it looks like, has happened, you know, there’s some courses of action that you might want to take, but they’re really an intermediary between you and the doctors, and they don’t really do much with the patient, other than perhaps check in on you, and just see how things are going and understand that level of that level of kind of where you’re at.
Bill Gasiamis 1:02:26
But they don’t really get involved with much of the medical side of the process. And I suppose what they might be best doing sometimes is referring you along to other people who are more likely to help if they know who to refer to.
Maria Sclafani 1:02:44
Yeah, and he, um, I asked him, I also asked him how many strokes I’d had, because at the hospital, they just kept saying multiple. And he said that it didn’t matter how many strokes I’d had that, you know, my brain had just been damaged in some way. And it was gonna, like, you know, and I asked the question, like, you know, well, can I go back and do my job? You know, can I go back to work? And he was like, I don’t know.
Challenges in accessing neuropsychological evaluationsBill Gasiamis 1:03:12
Yeah. He is, it’s for Neuro psych, to evaluate your ability, for example, if whether or not your executive function is up to the task or not. And that’s the thing, it’s like, when you’re a stroke survivor, you don’t know where to go and who to get information from.
Bill Gasiamis 1:03:29
So you ask the person that you came across the first time, which might have been a doctor, or a neurologist, and you hope that they can be a little more forth, coming with at least some kind of feedback other than them be blank and say, I don’t know. And even though that’s the truth, and maybe the answer should be, I don’t know.
Bill Gasiamis 1:03:55
And then, I don’t know, but I don’t know and maybe, and then just sort of give you guidance as to where to start the conversation with the next person who the next person might be. That’s the part that I struggle with. This so specialized, they have no idea who else can support a stroke survivor in their recovery. And even if they get it wrong, and they say you need to go and see a neuro Psych.
Bill Gasiamis 1:04:22
And perhaps it wasn’t a neuro psych that you needed to say, Well, who cares? It at least you’re you’re going through the process of getting the conversation started and you’re ticking off things, and then you’re narrowing down who it is that’s going to be more likely to be able to support you and help you overcome those challenges, whatever they are physical, for some people, cognitive bothers speech for others.
Bill Gasiamis 1:04:51
So they can it is a little bit disappointing. Some people do get disappointed with their neurologist but it’s because we act expect too much from them. And we don’t know where, where else to go. That’s the thing that I found I had
Maria Sclafani 1:05:08
to actually ask him to refer me to the neuro psychologist. Yeah. But you know, because of your podcast then. So I mean, I mean, I had to information seek, and I found your podcast because I listened to podcasts anyway. So I was like, okay, so if I listen to podcasts anyway, why don’t I search and see if there’s any stroke podcasts.
Maria Sclafani 1:05:30
And I found your podcast. And I think I discovered the American Stroke Association website, they have a warm line that you can call, so you call and you leave a message, and someone will call you back in a few days. I utilize that. But I, you know, I actually ended up buying hope after stroke, that book by the doctor that you interviewed, and I listened to that interview, and then I went out and I bought the book, and I told my mom that she had to buy it.
Maria Sclafani 1:06:06
So we have two copies now, but you know, because I was like, finally, you know, like actual something about what to do after a stroke. And so I was kind of like, just doing what like a librarian does. I like, found a podcast, I found a book, I found out about the neuro psychologist. And she asked me when I met with her, you know, she said, Well, how are you referred here? You know, why did your neurologist refer you?
Maria Sclafani 1:06:37
And I said, he didn’t actually I had to call and request that he referred me. And his nurse said she didn’t know what a neuropsychologist was. So yeah, and you know, there was a lack of neurologists in Wichita, which is apparently like a well known problem. You don’t find that out until after you need a neurologist.
Maria Sclafani 1:07:05
But there also was a lack of neural psychologists. So I just went to one. And she told me that she was the only one other than the one that worked at the VA, and he could only work with veterans. Wow. Wow was like the only option. And fortunately, she was very nice, you know, and very helpful.
Bill Gasiamis 1:07:23
And problem worldwide. Like in Australia, if you have an appointment to see neurologist, if it’s through the public system. Not a neurologist, a neuro psychologist, you could wait nine months to see a neuro Psych. It’s such a long time to wait when you’re in dire straits, and you’re not thinking properly and you don’t know how to help yourself.
Bill Gasiamis 1:07:48
And I remember waiting nine months for me to see a neuro psychologist after my counselor suggested I see neuro Psych. My, my psychologist, suggested that I say neuro psych because she realized in our conversations that there was things amiss, and that I wasn’t able to begin and finish sentences.
Bill Gasiamis 1:08:09
And what I didn’t know. Because we just weren’t thinking straight. What I didn’t know was that I could get a private appointment to say, a neuro Psych and pay $500 or more, or whatever it was, at the time. And speed up that process and get to see them sooner so that they could help me quicker. I didn’t know that you could do that.
Bill Gasiamis 1:08:37
But the test for a neuro psych evaluation is such a long process and the report writing later on is such a long process that what I realized recently to see a neuro Psych and to get a neuro psychological assessment done, it can be up to about $2,000. So it’s prohibitive from a cost perspective, especially when you’ve had a stroke and money’s an issue.
Bill Gasiamis 1:09:04
And then it’s also you need to know you need to get lucky and find the right piece of information to tell you that you should see a neuro Psych and then you need to learn what a neuro psych does and how they’re different from a psychologist and what their role is in supporting you.
Bill Gasiamis 1:09:21
And it’s such a jigsaw puzzle and such a you know, it’s such a task to just work out all those things, and I never had podcasts listened to. I didn’t have many books to read and write when I started going through this. So I had to really uncover it myself. One of our biggest tasks was research.
Bill Gasiamis 1:09:44
I think our biggest task in this recovery process was research and and then hitting brick walls when you took that research to your doctor and then they didn’t know what the hell you’re talking about because Nobody had ever gone to them with a bit of information about stroke, and they were just a general practitioner, and they hoped you would just go to the next person and the next person would help you and no better off not having you in their practice. That’s how I felt anyway. Yeah.
Maria Sclafani 1:10:18
I certainly felt that way. A little bit. The neurologist eventually referred me to a vascular specialist. And he said, You know, so I think I think we’re done. You don’t need to continue to see me, I think you have to go see this vascular surgeon. Because they discovered or determined, I should say, the cause of my strokes. It was a dissection in my carotid artery. On my right side.
Bill Gasiamis 1:10:49
Ah, wow. Okay.
Maria Sclafani 1:10:52
So that was in January. So I had the strokes in September, and then they waited a few months to then do a CT scan a follow up CT scan in January. And they got the results. And he said, so it’s clear, you know, now that there’s not like a bunch of blood and stuff in the CT scan, we can see that you have.
Maria Sclafani 1:11:14
So he said it was a pseudo aneurysm. So not an aneurysm, but just like a bump or an abnormality in my arm in my carotid artery and actually have one in both carotid arteries on the right and the left.
Bill Gasiamis 1:11:31
So have you been diagnosed a blood thinner, not diagnosed prescribed a blood thinner.
Maria Sclafani 1:11:37
I was. And so I was prescribed a blood thinner after the strokes and baby aspirin. And they told me after they figured out the cause to stay on the baby aspirin, and to go off of the Plavix, or, you know, whatever it was so, and they said, I would have to be on that for the rest of my life, which is fine. You know, yeah,
Bill Gasiamis 1:12:00
it’s a small price to pay to have to decrease dramatically your risk of another clot. Did it help when you found out what the cause was? Did that kind of help?
Maria Sclafani 1:12:14
It did a little bit, but it was kind of frustrating, because, you know, first off my family, and my parents are scientists, so they know a little bit. My dad worked at the Med med school. So University of Colorado Health Sciences Center, which is based in Aurora and Colorado, so he worked there.
Maria Sclafani 1:12:35
So he like knows a lot of doctors. But he’s not a doctor himself. And so we were like, What is a pseudo aneurysm? Like, we’ve never even heard of that. And then it was sort of like, okay, what’s a dissection? Didn’t know what that was, you know? And then what is this mean? And by the time I made it to the vascular specialist, it was a few months.
Maria Sclafani 1:12:58
And he was very nice. And he said, you know, this could be fibromuscular dysplasia. But it might not be, there isn’t really a test for FMD. So I can’t give you a test. And my recommendation is just that we monitor it.
Bill Gasiamis 1:13:19
Yeah, that’s okay. That’s good. That is a really good outcome. Now that, you know, its cause and you have somebody who knows about these things, and that they can help you monitor it and keep an eye on it. That’s a really good outcome. I like that. What was the hardest thing about stroke for you?
Maria Sclafani 1:13:42
I think it was actually, like, basically, maybe a year after the strokes. When I got this, I went through this depressive episode. And because I convinced myself that I recovered from the strokes and I was fine. That’s what you know, like, the whole summer, the previous that summer had been like, great. And, you know, my brother had a baby.
Maria Sclafani 1:14:08
So I have a nephew and so like, you’re all excited about that, and all this stuff. And so, I you know, I traveled all summer, you know, I done really well, I got to see a bunch of people. So I felt like I’d recovered. So like, it was over. And then it was like, Okay, maybe, maybe it’s not over. You know, it’s not something that I can like be I guess it’s not something that I can like, you know, overcome. I think maybe this is just how I am now.
Bill Gasiamis 1:14:47
So what I was gonna say what has stroke taught you?
Learning patience and adapting after a recurrent strokeMaria Sclafani 1:14:56
Um, so I would say that and I get asked this kind of a lot. But I get asked some variation of that question. But I think that I was very judgmental before I had my strokes of other people. I didn’t have a lot of patience. And I, it was sort of like, well, if I can do it, then why can’t you do it, that kind of attitude. And, I mean, I’m a very type A personality, like, I was, like, you know, did very well in high school.
Maria Sclafani 1:15:31
And then I went to a good school for unit for college, I went to a women’s college actually. And I got straight A’s there. And then I wrote a thesis, and I got, you know, did well on my thesis, and I went to grad school in Colorado, and I got straight A’s in grad school. And then I went back to grad school. For library science, you’re gonna get straight A’s there. So I felt like I like knew, you know, I knew everything.
Maria Sclafani 1:15:58
And I didn’t understand why more people couldn’t be like me, or whatever. I don’t know a better way to put it. But I feel like I was very harsh. And I think it created some problems for me when I started my job, because that was my first library job. Out of library school was Wichita State.
Maria Sclafani 1:16:19
So I had never, like I worked in a library at University of Illinois, which is where I went for my degree, I worked as a graduate assistant. So I did work in a library there. But this was like my first time, having a full time tenure track, faculty librarian position. And so I think there was some ruffled feathers at first.
Maria Sclafani 1:16:44
But after the strokes, it was like, I couldn’t do anything. Like I couldn’t really do much. I couldn’t teach, you know, I had trouble with reference. Um, I had trouble getting dressed, you know, had trouble putting on clothing. And like, you know, one time I showed up to the Reference Desk to do my shift. And it was like, 130, and my coworker was like, What are you doing here? And I was like, Oh, my shift starts at two.
Maria Sclafani 1:17:16
And he was like, right? It’s 130. And I was like, Oh, I wanted to get here early, like that sense of time, you know? And it was just like, like, it was like, Okay, well, I’d want to like leave my office probably at like, maybe 151 55. So I could walk over to the desk and be there by two, but like, I just left at 130. So it was stuff like that, that I then needed other people’s help with. Because I couldn’t do everything. I wasn’t like a smarty pants anymore.
Bill Gasiamis 1:17:51
anymore. Yeah. Yeah. That’s a pretty big lesson. And it’s understandable. Love shrinks by this say that they learned to be more patient with other people. And they had a deeper understanding of what it was like to be somebody who was struggling. I certainly had to live in a wheelchair for a short amount of time, probably about three and a half, four weeks.
Bill Gasiamis 1:18:14
And then I quickly understood that people in wheelchairs are not just sitting down, which is what I assumed they were doing, they were just sitting there no big deal. It didn’t mean anything. This is pretty crazy, that I had to learn that way. But I’m glad I learned that.
Bill Gasiamis 1:18:30
So there’ll be people listening, hoping to get a little bit of a nugget out of this episode, if you already haven’t picked up a few. What would you say to somebody who’s just started their recovery? And are going through this and struggling a little bit? Well? Or would you be one, maybe one piece of advice you could leave them with?
Maria Sclafani 1:18:53
I would say, um, take your time, in recovery, don’t let anyone rush you. And don’t rush yourself. Because I very much did that. Like, you know, my parents were trying to get me to slow down and I was just like, trying to get right back to work and do all this stuff. But you have to take the time. Um, because and I had to actually go to therapy to learn this.
Maria Sclafani 1:19:17
But like, sometimes your plan A doesn’t work out for like, whatever reason, and My Plan A was like, getting a tenure track faculty position at a university and then going up for tenure. And hopefully, like, right, getting tenure and having job security for life. And that is not it’s not going to happen. It’s not I’m a different person now.
Maria Sclafani 1:19:41
So I have to come up with the plan B of like, what I’m going to do now that I have these limitations or whatever you want to call them with my executive functioning and issues with mental health and things like that. Because I think if I had taken the time to really process what had happened to me, and maybe stayed away from work, like, for longer.
Maria Sclafani 1:20:09
Because I think that, you know, the reality is that they would have gotten on without me, like, you know, like it wouldn’t, the library would not have fallen apart, like they would have been able to continue to function, it didn’t actually need me, I could have stayed home for longer and decided, you know, do I want to do this job or not, because I have been told, and this is all informal.
Maria Sclafani 1:20:33
But I’ve been told that if I had applied for disability, before I went back to work, I would have probably qualified for it easily, because of the fact that I had this extensive brain damage. And they told me, I think two or three parts of my brain, like the front, whatever this is, and then the back, like, you know, major parts of my brain that I would have gotten disability easily. But you couldn’t have told me that at that time.
Maria Sclafani 1:21:09
Because I was like, very focused on going back to work. And so I went back to work, and then you know, I don’t have that job now. But I have other things going on. And I probably will continue to, like, have jobs or work at some to some degree.
Maria Sclafani 1:21:26
But I realized that I have to, like, have different types of jobs that are more flexible, that like allow me to maybe work remotely on certain days when I’m not feeling well, or having mental health struggles, or, you know, to work part time jobs. Because health insurance is a big thing. And until the Affordable Care Act was passed in the US, I mean, like you had to have a job to have health insurance. And now that’s not the case.
Maria Sclafani 1:21:57
And I’m for the first time benefiting from that. Because I do have, I do have income. I have some from January. And I also like have, you know, other jobs and other things I’ve been doing. So I qualify for health insurance through the Affordable Care Act. And now I don’t have to worry about getting a full time job.
Maria Sclafani 1:22:18
So I can have health insurance. I can just like work part time. Yeah, you know, but I really created a lot of stress for myself, and like strife and struggle. So like all the s words, by like not taking the time after the strokes to really process them.
Bill Gasiamis 1:22:44
Yeah, that’s excellent advice. Maria, thank you so much for reaching out. And being on the podcast, I really appreciate it.
Maria Sclafani 1:22:53
Well, I want to thank you for doing the podcast, as like a stroke survivor and a listener of the podcast, you know, I think it’s really important and significant.
Maria Sclafani 1:23:03
And you have said that like you do it, because you feel like there’s this lack, like this, this gap between like, advice people get when they have the strokes and then like, what do they do like after like, there’s nothing to help them. And the people that need this information, like aren’t aren’t necessarily getting the stroke prevention information. So like, this is a way to provide that information. Like, you know, who knew about stroke? ambulances? Yeah,
Bill Gasiamis 1:23:35
who knew about all the things that have been discussed in the last 300? And something episodes? I mean, yeah, I certainly didn’t, I didn’t need to know. So I was oblivious, and you know, comfortably oblivious, no problem I didn’t need to know. So. But I was in dire straits, you know, at one point, and I needed information, and I still need information. And I feel like it’s necessary for other people to have information.
Bill Gasiamis 1:24:05
And I think it’s part of my role now. And also, the need to talk to people that are going through what I’m going through, because as much as a long time has elapsed since my first incident, it was 12 years ago. And nobody wants Nobody that I know, still wants to hear me talk about it for 1212 years on. No one really does.
Bill Gasiamis 1:24:30
And it’s not saying anything about them. It’s just that it gets boring when I talk about it to my family and friends all the time and all that kind of stuff. Like it’s just they can’t. Yeah, they’re all thankfully, healthy and well, and I cannot relate and, you know, it’s your own territory if I start talking about that kind of stuff with them, so I need other people to talk to about it. It’s the thing I like, the most is I lack people who understand me.
Bill Gasiamis 1:25:07
And I find that I get them on the podcast. They understand me, I understand them. And I, and that makes my life a little easier and my mental health a little better. And I also feel like I’m being useful. And I couldn’t do without you guys. So you know, being again, me talking about stroke on my own on a podcast to the world would be pretty boring.
Bill Gasiamis 1:25:35
You know, I need other guests. And I’m so glad that I reached out on Instagram and got inundated now I’ve got the work ahead of me. I got inundated. I’m not kidding you. Like, I think I had 30 responses. Usually, that’s 30 episodes. And that’s half more than half of the year. So, you know, thank you for acknowledging me. I really appreciate it. But I want to acknowledge you guys as well, like it’s a team effort. Yeah.
Maria Sclafani 1:26:08
Well, I think what people need most generally is to not feel alone. Yeah, you know, and this really helps with that this type of podcast and
Bill Gasiamis 1:26:19
I’m glad. Thank you for being on the podcast.
Maria Sclafani 1:26:22
Thank you so much for having me. Well,
Bill Gasiamis 1:26:24
thanks again for joining us on today’s episode. I hope you enjoyed my chat with Maria, and found inspiration in her journey of advocating for proper medical care, and overcoming the challenges of stroke recovery. If you’re interested in my book about stroke recovery, you can grab a copy on Amazon by visit or by visiting recoveryafterstroke.com/book.
Bill Gasiamis 1:26:47
To learn more about Maria, including her social media links and to download the full transcript of the interview, head over to recoveryafterstroke.com/episodes. A huge thank you to everyone who has left a review it means the world to me. Reviews are crucial for podcasts to thrive, and feedback helps others find this valuable content, making their stroke recovery journey a little easier.
Bill Gasiamis 1:27:14
If you haven’t left a review yet, please consider leaving a five star review and a few words about what the show means to you on iTunes, and Spotify. If you are watching on YouTube, leave a comment below, like the episode and subscribe to the show on your preferred platform to get notifications of future episodes. If you are a stroke survivor with a story to share, come and join me on the show The interviews are unscripted, and you do not require to plan for them.
Bill Gasiamis 1:27:45
Just be yourself and share your experience and help others in a similar situation to you. If you have a commercial product that supports stroke survivors in their recovery, you can join me on a sponsored episode of the show. Just visit recoveryafterstroke.com/contact Fill out the form and I will get back to you with details on how we can connect via zoom. Thanks again for being here and listening. I truly appreciate you see you on the next episode.
Intro 1:28:12
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed all content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill gassy armas, the content is intended to complement your medical treatment and support healing.
Intro 1:28:45
It is not intended to be a substitute for professional medical advice and should not be relied on as health advice the information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.
Intro 1:29:06
Never delay seeking advice or disregard the advice of a medical professional your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be called triple zero in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department medical information changes constantly.
Intro 1:29:33
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Comprehensive Guide to Recovering From Stroke: Advanced Techniques and Best PracticesRecovering from a stroke is a critical process that helps survivors regain independence and improve their quality of life. Our approach to stroke rehabilitation integrates cutting-edge therapies and personalized care plans to address the unique needs of each patient. This comprehensive guide outlines the most effective strategies and interventions for successful stroke recovery.
Understanding Stroke RehabilitationWhat is Stroke Rehabilitation?Stroke rehabilitation is a multifaceted program designed to help individuals recover as much function as possible after a stroke. It involves a team of healthcare professionals who work together to create and implement a tailored rehabilitation plan.
Goals of Stroke RehabilitationThe primary goals of stroke rehabilitation are to:
- Restore lost skills and abilities
- Prevent complications
- Improve physical and cognitive functions
- Enhance overall quality of life
Key Components of Recovering From StrokePhysical TherapyPhysical therapy focuses on improving movement and coordination. Therapists use various exercises and techniques to help patients regain strength, balance, and mobility.
Techniques and Exercises Gait Training: Exercises to improve walking and balance * Strength Training: Resistance exercises to build muscle strength * Range-of-Motion Exercises:* Movements to enhance flexibility and prevent stiffness
Occupational TherapyOccupational therapy helps patients relearn daily activities and improve their ability to perform tasks such as dressing, eating, and bathing.
Adaptive Techniques Task Modification: Adapting tasks to make them easier to perform * Use of Assistive Devices: Tools and equipment to aid in daily activities * Energy Conservation:* Strategies to manage fatigue and conserve energy
Speech and Language TherapySpeech and language therapy addresses communication difficulties and swallowing problems often experienced by stroke survivors.
Speech Improvement Strategies Language Exercises: Activities to enhance speaking, listening, reading, and writing skills * Swallowing Techniques: Exercises to improve swallowing and prevent aspiration * Communication Devices:* Tools to aid in communication, such as speech-generating devices
Psychological SupportRecovering from stroke also includes psychological support to help patients cope with emotional and mental health challenges.
Counseling and Support Groups Individual Therapy: One-on-one sessions with a psychologist or counselor * Support Groups: Group sessions with other stroke survivors for mutual support * Cognitive Behavioral Therapy (CBT):* Techniques to manage negative thoughts and behaviors
Innovative Techniques for Recovering From StrokeRobotic TherapyRobotic therapy uses advanced robotics to assist with repetitive motion exercises, enhancing motor recovery and reducing fatigue.
Benefits of Robotic Therapy Consistency: Provides consistent and precise movements * Intensity: Allows for high-intensity training * Feedback:* Offers real-time feedback to track progress
Virtual Reality (VR) TherapyVirtual reality therapy creates immersive environments for patients to practice movements and improve cognitive functions in a controlled setting.
Applications of VR in Stroke Rehabilitation Motor Skills Training: Simulated activities to improve hand-eye coordination * Cognitive Training: Virtual tasks to enhance memory, attention, and problem-solving skills * Motivation:* Engaging and interactive experiences to keep patients motivated
Constraint-Induced Movement Therapy (CIMT)CIMT involves restricting the use of the unaffected limb to encourage the use of the affected limb, promoting neural plasticity and motor recovery.
Principles of CIMT Forced Use: Limiting the unaffected limb to force use of the affected limb * Intensive Practice: Repetitive and intensive practice of targeted movements * Shaping Techniques:* Gradually increasing the difficulty of tasks
Personalized Rehabilitation PlansAssessment and EvaluationA comprehensive assessment is crucial to developing an effective rehabilitation plan. This includes evaluating the patient’s physical, cognitive, and emotional status.
Evaluation Tools Functional Independence Measure (FIM): Assesses the level of a patient’s independence * Berg Balance Scale: Measures balance abilities * Mini-Mental State Examination (MMSE):* Evaluates cognitive function
Goal Setting and Progress MonitoringSetting realistic and achievable goals is essential for maintaining motivation and tracking progress.
Goal Setting Strategies SMART Goals: Specific, Measurable, Achievable, Relevant, and Time-bound goals * Regular Reviews: Periodic assessments to adjust goals and interventions * Patient Involvement:* Encouraging patient participation in goal setting
Family and Caregiver InvolvementEducation and TrainingEducating family members and caregivers about stroke recovery and rehabilitation techniques is crucial for providing effective support.
Caregiver Training Programs Hands-On Training: Practical sessions to teach caregiving skills * Educational Workshops: Information on stroke recovery and management * Support Services:* Resources and support groups for caregivers
Long-Term Stroke RecoveryOngoing Therapy and MaintenanceRecovering from stroke is an ongoing process that requires continuous effort and therapy to maintain and improve function.
Maintenance Strategies Home Exercise Programs: Customized exercises to perform at home * Community Programs: Access to local rehabilitation services and activities * Telehealth Services:* Virtual therapy sessions for ongoing support
Prevention of Secondary StrokesPreventing secondary strokes is a critical aspect of long-term recovery and involves managing risk factors and making lifestyle changes.
Risk Factor Management Blood Pressure Control: Regular monitoring and medication adherence * Healthy Diet: Nutrition plans to reduce stroke risk * Physical Activity:* Regular exercise to maintain cardiovascular health
Recovery After Stroke Podcast Interview With Fares RaffoulRecovering from a stroke, Fares Raffoul shares his journey from carpenter to survivor, highlighting resilience, neuroplasticity, and determination.
(Transcript Coming Soon)
The post Recovering From Stroke – Fares Raffoul appeared first on Recovery After Stroke.
Understanding the Link Between Diabetes and StrokeIntroductionDiabetes significantly increases the risk of stroke. This article aims to provide comprehensive information on the relationship between diabetes and stroke, including symptoms, causes, prevention strategies, and treatment options.
What is a Stroke?A stroke occurs when the blood supply to part of the brain is interrupted or reduced, preventing brain tissue from getting oxygen and nutrients. This can lead to brain damage and long-term disability or death.
How Diabetes Increases Stroke RiskMechanism of Increased RiskDiabetes impairs the body’s ability to produce or use insulin effectively, leading to high blood glucose levels. Over time, elevated glucose levels can damage blood vessels, including those in the brain. This increases the likelihood of a stroke.
Contributing Factors High Blood Pressure: Common in diabetics, high blood pressure damages blood vessels. * High Cholesterol: Excess cholesterol can form plaques in blood vessels, narrowing them and restricting blood flow. * Obesity*: Often associated with diabetes, obesity further increases stroke risk.
Symptoms of Diabetes-Related StrokeThe symptoms of a stroke in people with diabetes are similar to those in the general population:
- Sudden numbness or weakness, especially on one side of the body
- Confusion, trouble speaking, or understanding speech
- Difficulty seeing in one or both eyes
- Trouble walking, dizziness, or loss of balance and coordination
- Severe headache with no known cause
Diagnosing Stroke in DiabeticsHealthcare providers use various methods to diagnose stroke:
- Physical Exam: Assessing muscle strength, coordination, and cognitive function.
- Imaging Tests: CT scans and MRIs to visualize brain activity.
- Blood Tests: To check glucose levels and other potential risk factors.
- Electrocardiogram (ECG): To identify heart issues that may contribute to stroke risk.
Treatment OptionsImmediate Treatment Clot-Busting Drugs: Administered to dissolve clots and restore blood flow. * Mechanical Thrombectomy*: Surgical removal of large clots from brain arteries.
Long-Term Management Blood Thinners: To prevent new clots from forming. * Blood Pressure Medications: To manage hypertension. * Statins*: To lower cholesterol levels.
Prevention StrategiesPeople with diabetes can reduce their stroke risk through lifestyle changes and medical management:
- Monitor Blood Sugar Levels: Keep glucose within the target range.
- Control Blood Pressure: Regular monitoring and medication adherence.
- Healthy Diet: Focus on low-fat, high-fiber foods, and limit salt intake.
- Regular Exercise: Aim for at least 150 minutes of moderate aerobic activity weekly.
- Weight Management: Achieve and maintain a healthy weight.
- Quit Smoking: Smoking cessation is crucial for reducing stroke risk.
- Regular Check-Ups: Frequent consultations with healthcare providers to manage risk factors.
ConclusionUnderstanding the connection between diabetes and stroke is essential for effective prevention and treatment. By managing blood glucose, blood pressure, and cholesterol, and maintaining a healthy lifestyle, individuals with diabetes can significantly reduce their risk of stroke.
By incorporating these strategies, those with diabetes can take proactive steps to mitigate their stroke risk and improve overall health outcomes.
Interview With Deven MatthewsDeven Matthews experienced a stroke due to undiagnosed diabetes and high blood pressure, leading to a journey of recovery and health transformation.
Highlights:
01:54 Introduction
03:02 Diabetes And Stroke Recovery
08:02 Symptoms Of A Stroke And Seeking Medical Attention
17:46 Reversing Type 2 Diabetes Through Diet And Exercise
23:07 Coping With Stroke’s Emotional And Mental Challenges
28:10 Returning To Work After A Stroke
35:27 Sustainable Busy-ness After Stroke Recovery
43:58 Disability And Faith
50:02 Feeding The “Recovery Tiger” vs. The “Self-Pity Tiger”
1:02:08 Medical Interventions, And Hope For Improvement
1:03:12 The Hardest Thing About Stroke
1:06:44 FDA-Approved Neurostimulation Device For Stroke Recovery
1:09:59 Lessons From The Stroke
Transcript:
Bill Gasiamis 0:00
This episode of the podcast is brought to you by headbed.com.au. Hey everyone, before we dive into today’s episode, I wanted to share something special. In episode 305 I interviewed Catherine Randabel, the inventor of HeadBed a product revolutionizing hair salons, especially for stroke survivors.
Bill Gasiamis 0:20
The HeadBed provides excellent neck and head support during hair washes, reducing strain, and promoting better blood flow. For stroke survivors. This means lowering the risk of arterial damage and easing the concerns about another stroke. It ensures a safe, enjoyable salon experience.
Bill Gasiamis 0:40
I’m thrilled to support a product that aligns with my mission of stroke prevention and safety. In our interview, Catherine explained how HeadBed’s ergonomic design prevents neck hyperextension, a common issue increasing stroke risk. With the HeadBed you can feel confident and comfortable at the salon knowing your health is prioritized. If you’re a stroke survivor or know someone who is the head bed is a must-have for your next salon visit.
Bill Gasiamis 1:11
Check out episode 305 for my full interview with Catherine and learn how this product can make a difference. For those in the United States. Visit headbedusa.comheadbedusa.com to get yours today and enjoy peace of mind at the salon. Now I’d also like to mention my book The Unexpected Way That A Stroke Became The Best Thing That Happened. 10 tools for recovery and personal transformation. It fetches inspiring stories from 10 stroke survivors and offers hope for those on the road to recovery. For more information visit recoveryafterstroke.com/book or search my name Bill Gasiamis on Amazon.
Introduction – Deven MatthewsBill Gasiamis 1:54
Well, hello, everyone. Welcome to another episode of the recovery after stroke podcast. This is episode 310. And my guest today is Deven Matthews. Deven’s story is a powerful reminder of the importance of prioritizing our health. Deven was living with undiagnosed high blood pressure and diabetes, which resulted in a sudden stroke that changed his life.
Bill Gasiamis 2:17
In this compelling episode, Deven shares his journey of resilience and recovery, detailing the symptoms that led to his stroke, the challenges he faced during his treatment and the incredible steps he took to reverse his type two diabetes without medical intervention. We also discussed the emotional and mental struggles post-stroke, the significance of community support and the importance of maintaining a balanced between work and personal life. Deven Matthews, welecome to the podcast.
Deven Matthews 2:51
Hi Bill it’s really a pleasure to meet you. Thank you for having me.
Bill Gasiamis 2:56
It’s my pleasure. Also, thank you for being here. Tell me a little bit about what happened to you.
Diabetes And Stroke Recovery JourneyDeven Matthews 3:02
Well, two years ago, February, I had an ischemic stroke. It was like It landed on the left side of my brain. So my right side is affected. And it was a scare, stroke is something I never would have even anticipated happening. Like many people have strokes as a total surprise. I had undiagnosed high blood pressure and undiagnosed diabetes. So a horrible combination. And I woke up one morning and sure enough it was happening. And just like most of your listeners and the other people I heard on these podcasts. It’s alarming, it’s startling, it’s frightening. And it’s a life-changing event.
Bill Gasiamis 3:52
Deven, pardon my ignorance. How did you not know you had both high blood pressure and diabetes? How do you go about life not experiencing any negative impacts of those conditions? I don’t get it.
Deven Matthews 4:14
Good question. A lot of it was turning a blind eye I will admit a lot of it was I was extremely busy working a lot and I didn’t have time to be sick or take care of myself. So it kind of just went undiagnosed so my advice now is go see your doctor at least three times four times a year and don’t be afraid of what they’re gonna say because the alternative is worse.
Bill Gasiamis 4:41
I reckon busyness has put a lot of people in to an early grave. So what does busyness mean for you? Like what was that like? I have the same issue. When I first went through my two brain hemorrhages the first two. But most importantly, the first one, I ignored the numbness down my left side for seven days.
Bill Gasiamis 5:10
And it was because I was busy, I had work to do, I had a client to please, I needed to get paid. I needed to do all those things other than stop for five minutes and go and spend some time at a doctor and tell them what my symptoms were my wife tried to convince me to go my chiropractor tried to convince me to go, I argued with both of them. And when I eventually went, they said to me, we found a bleed in your brain. What was your busy schedule like? How many hours a day? What kind of work were you doing?
Deven Matthews 5:50
I’m a married man. Our marriage is fantastic we’ve been married 27 years, we have six kids say no more. So between working full time, and running six kids around, it was just crazy. busy times. And you know, I’ve certainly learned from the stroke to just slow down and don’t take life so seriously. I mean, like you there was a stress of earning a living and keeping the income coming in, and kids to soccer and piano lessons wherever they’re going and keeping up with them.
Deven Matthews 6:27
And so it was difficult. It’s fine. I don’t blame my family. I don’t blame anything. It’s completely my responsibility. And I have learned clearly. Did your kids ever hear no from you? I can’t take you to be in practice. I can’t take it soccer. You have to find your own way there. Did they ever hear no from you guys? No. And I have to give credit to my boss who she’s just as busy with the kids as I am.
Deven Matthews 6:57
And I don’t want to say they took up all of our time, because the good part of what I was doing is working as well. And so it just I don’t know, you got to make sure your priorities are in the right spot. And your health is definitely one of those priorities that needs to be near the top.
Bill Gasiamis 7:14
And it’s about balance. It’s also about being there for the kids doing the right thing for the family, supporting everyone. And then also keeping yourself the same privilege.
Deven Matthews 7:26
Right. Trying to stay sane the whole time.
Bill Gasiamis 7:31
What are the ages of the children? What do they range from?
Deven Matthews 7:35
At the time? My oldest was 23. My youngest was eight. So it’s just a big wide range, mostly adult children. So that doesn’t require as much care as the other ones. But the years leading up very, very busy, busy lifestyle.
Symptoms Of A Stroke And Seeking Medical AttentionBill Gasiamis 7:56
On the day of the onset, what were some of the symptoms that you experienced? That you thought something was not right? Did you think something’s not right? I need to do something about this. How did you go about dealing with what was happening on the actual day?
Deven Matthews 8:15
Well, It was a Sunday morning, and I woke up and I woke up about nine you know, Sunday sleeping a little bit. And it just felt weird. I’ve heard your guests on this podcast that before, but something just felt off. Weird. Not really. See you’re shaking your head, you probably remember it just feels off. Something’s weird. And that probably. And I laid in bed for an hour and scrolled on the jawbone. You know I can do and then I decided okay, I’ll get up and get ready. So I got up and I just felt off balance. It felt like somebody was pushing my left side.
Deven Matthews 8:58
Over Sorry, I was like falling like walking on a moving train. The same type of feeling right. And I got up and went to the bathroom. And as I walked in the bathroom, I hit my shoulder against the doorframe I thought. What? How did I miss the doorframe, my whole life. I’ve never done that. And got in the shower. And in the shower, I reached for the bar suit with my right hand and I missed and I was like, What is going on? grayed out contrast. Everything was still weird, wonky.
Deven Matthews 9:37
And I went to the kitchen and I tried it. I thought oh, eat something. I appealed a banana. And I completely miss my mouth. I was taught that something is way off. Now this should have been enough science but the thing that finally pushed me over was it was a Sunday like I said, and I played the organ for my congregation at church, I played the piano since I was eight years old. I used to know I played one-handed.
Deven Matthews 10:07
And I went to my piano here to practice the songs for that service that day. And my right hand was missing all the notes. And like I said I’ve been playing since I was eight years old, and I knew something’s weird, something’s weird. And I go by symptoms, and it says, stroke.
Intro 10:27
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind, like, how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, and doctors will explain things. But obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 10:51
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website. Now, recoverafterstroke.com and download the guide. It’s free.
Deven Matthews 11:29
sort of went to my wife who was getting ready for church in the bathroom and said, Hey, I think I’m having a stroke. And she looked at me and her face froze. And she said, Gavin, your right side is totally drooping. I said, Let’s go. Let’s go to the hospital is only like three minutes from my house. She jumped in the car. I gave the kids kiss goodbye just because I didn’t know what I was going to.
Deven Matthews 11:55
And I walked into the ER I was halfway across the parking lot with Rachel and the guy came out and said, what’s wrong with you? And I said, I think I’m having a stroke. He says stop, don’t move. He brought a wheelchair on for sure was liability reasons. He rolled the end and the doctors just went to town. Raise your arms. Okay. And you can’t follow my finger with your eyes, things like that. And they said get it back there. And sure enough, ischemic stroke.
Bill Gasiamis 12:24
Yeah. Were you a lot heavier at the time?
Deven Matthews 12:28
Yeah, yeah.
Bill Gasiamis 12:30
How much heavier?
Deven Matthews 12:32
I was over 300 pounds. I’ve lost 110 pounds since my stroke.
Bill Gasiamis 12:37
Okay, I have to convert that kilos. Because every episode most of my guests are overseas. So 300 pounds, to kilos. It’s 136 kilos that’s quite heavy. And you’ve lost 120 pounds. Yeah, 54 kilos. You know, that’s the size. The full grown adult 54 kilos, that’s another person.
Bill Gasiamis 13:20
So definitely, then, if somebody had seen you, without the droopiness, and all that kind of stuff, in a hospital setting, and you thought you felt unwell, they would have asked you the questions. Have you had your blood pressure checked? Have you got diabetes, that kind of stuff that would have definitely asked you those things? Because often those conditions come hand in hand with people who are heavy. So at that stage, given you the red carpet treatment. And then what happened?
Deven Matthews 14:01
They put me in a bed, put a TPA through me MRI, the whole nine yards. And the doctors kept saying, you know, they come in every 20 minutes or so and say raise both arms, because so they could see how the right was committed to a little action.
Deven Matthews 14:20
I could do pretty well. But slowly so over the hours the right arm was weaker and weaker and weaker until finally I couldn’t move it seemed to turn right ladybird asked me to move my foot up and down my left leg like side with my ankle, cross my leg and originally I couldn’t do it. So it was there completely paralyzed on the right side. And the ironic thing is, I didn’t know much about stroke clearly.
Deven Matthews 14:49
But I had heard things like people lose their cognitive ability to recall their memories. There. A lot of learning language things like that. I don’t want to lose my memory. I don’t want to lose memories for my kids when we’re sorry, our wives, what can I do? So while I was laying there in the bed, I was reviewing music theory in my head. I was saying things like, okay, the key of D has two sharps. The key of E flat major has for flatss, and I was going over music theory over and over and over, hoping I can hold on to it.
Deven Matthews 15:27
Luckily, I mean, I did I didn’t lose the data. It’s still real music. It’s so like I said, play the piano one handedly. But I do miss being able to play Boolean solvency. So I can say that scales, arpeggios that saved my cognitive might interpret lay me in the hospital bed. Also the location of the stroke wasn’t impacting that part of your brain. So that was good. And do you know where the blood clot kind of stopped where it landed? Which part of the brain?
Deven Matthews 16:03
I don’t and I tried to do some research for this podcast I just couldn’t find out in time.
Bill Gasiamis 16:10
That’s okay, so then you’ve spent some time in hospital how much time?
Deven Matthews 16:16
I was there five days. First night in the ER, two nights in ICU. And then what night and a regular room so I guess four nights. And then I was shipped out to a rehabilitation hospital, where I was for three weeks.
Bill Gasiamis 16:36
And in those three weeks, what did you have to overcome clearly your right hand, but what else kind of the right foot the need to survive? If you’re going to that person in the ER, even, I couldn’t sit up, I couldn’t rollover, I couldn’t really get comfortable. I couldn’t move anything I’m gonna read said. So the long haul back to be mobile, started in the rehab hospital. Because in the hospital hospital, there is no PT or OT, or speech therapy, even that uncertainty, I went to the
Deven Matthews 17:13
facility
Speaker 1 17:16
over that word rehab, but um, again, once I was in rehab, I was actually very happy because I had physical therapy, occupational therapy and speech therapy at least once a day, at least once, sometimes even twice. And you’re welcome to anybody that would come in and help me I welcomed it, because I’ve saw them as my key ticket to get back to normal, whatever normal, it’s, you know, so thick, man.
Reversing Type 2 Diabetes Through Diet And ExerciseDeven Matthews 17:44
I do like what, let’s do it. Let’s get up. Let’s move. It’s something I remember the first night, the first day, they had to put me on this machine to even stand me up. And it looks like some medieval torture device. But um, I hit the wrap my hands around the top, you lifted me up and I kind of stand out and I’m not so good because I was doing it on my own that had dementia learn how to do it without a machine.
Bill Gasiamis 18:09
With the right leg now how does that feel day to day?
Speaker 1 18:14
Now, decent my right leg is probably recovered. Again, it’s been two and a half, two years and three months. I’ve had we have about 80% of my leg back totally. My big hang ups the ankle ankle, my ankle just won’t budge a little bit, but not a lot.
Deven Matthews 18:32
Arm again I have about 60% rescind fingers are hard. That’s very rare. The piano doesn’t really happen on the hand. But I can move a lot with my arm just not as well as most.
Bill Gasiamis 18:49
When you were in hospital, did they then immediately diagnosed diabetes and high blood pressure?
Deven Matthews 18:55
Yes. And we have meds for it right away I’m still on meds for it. I’m happy to say a little bit. I got my emergency down to four. So they said you’re no longer considered a diabetic. So that’s good news. It took me out for the insulin. But the high blood pressure still on meds. And monitor it now much more often than you think you’re at home.
Bill Gasiamis 19:20
Type two diabetes is one of those conditions that people don’t realize how much they can reverse it how easy it is to reverse. Well, I know I said the word easy, but it can be reversed without medical intervention. Right? Correct. Yeah. How easy was it for you to lose the weight and reverse it?
Deven Matthews 19:43
That first month simple because I was in the hospital. They controlled everything I eat right? I was sent on my own to drive in McDonald’s to go to get ice cream. And when I got out of the hospital, I just stayed on that zero sugar diet.
Speaker 1 20:00
I mean, yes, eat fruit And if there’s sugar in like, a piece of bread, okay, but I do not eat any refined sugars, cookies, cakes, soda, I cut soda totally out of my diet. That was not easy, because that was frickin quite a bit of soda before. But again, like you said, I don’t like to use the word easy, but it’s not difficult to cut that stuff out of your life. After a week or two, we kind of lose the craving for it.
Deven Matthews 20:26
There’s obviously a curve, you know, but once you get over that hump, it’s kind of smooth sailing. Even now, today, I drink one soda a year on my birthday, I’ll go get a soda and enjoy it about I nursed that thing I make it lasts all day, and no soda at all. And so it’s things like that. I’m drinking a lot of water. It’s fine. Do I miss coke and Mountain Dew? Well, yes, but I know that turn it into three back in the hospital, the second shot, and they don’t want that.
Bill Gasiamis 20:59
I’m with you. I stopped drinking sodas. I’d say it was three or four months after my first two brain bleeds. And I and I used to drink Coke. And people when I’d visit people, my brother or whoever at their home, they knew false coming over that they should have cochlear because if they had Pepsi, or if they had another one, I’d be like, no I’ll just have a water.
Bill Gasiamis 21:24
And they didn’t want to disappoint me. So they would get me a Coke. And my thing was ice. So the glass needed to be full to the top of ice. And then you pour the coke over the top, which isn’t a lot of coke. Most of it stays in the can, right? And then you sip it through. And then you keep refilling the ice with coke. And then it’s always frosty, and cold and amazing.
Bill Gasiamis 21:55
Just fabulous. And then really bad for you at the same time without knowing it. So, yeah, so I stopped doing it. And then every once in a while, very, very rarely. I reckon in the last 12 years. I’ve been lucky if I’ve had five cans in total of soda. So on your birthday, you get a can of Coke or Mountain Dew. Which one do you prefer?
Deven Matthews 22:24
A Coke absolutely.
Bill Gasiamis 22:26
Yeah. The original recipe, right? Yes. Constantly. Yeah.
Bill Gasiamis 22:33
When is your birthday?
Deven Matthews 22:35
In March 26.
Coping With Diabetes And Stroke Stroke’s Emotional And Mental ChallengesBill Gasiamis 22:37
March 26. You’ve just turned 50? Yes, I did. Okay, I’m turning 50 In a week from now. And I might celebrate it with I don’t know whether it’ll be with a coke. But it might be alcohol, I might have a drink of alcohol, which I very rarely have. So then you’ve gone through rehab, and then you’ve come home? What was it? Like coming home? How? How did you cope with the transition from hospital to home?
Deven Matthews 23:14
Obviously, huge, huge adjustment. I was in a wheelchair. And so I had to learn to navigate that. Luckily, thank goodness is we had a home where the master bedroom was downstairs, thank goodness. And we didn’t know when we bought the house, I was going to have a stroke. So that was a blessing. So I didn’t have to worry about stairs.
Deven Matthews 23:39
And I just had to learn to navigate the wheelchair around. It was hard because you lose all ability to do things like the dishes or laundry or a mass. And with that many kids have been in the house, even adult children. There’s a lot of dishes and laundry and medicine. And it was hard to just kind of let it go by it was also hard because I was always on asking my wife for help.
Deven Matthews 24:10
There’s laundry included you this and that. And can you help me take a shower? Can you help me get in bed? Can you help me and she’s got the liquid to worry about again. Luckily most of them were adults, but there was still the need when you have kids who don’t appear really stopping you. Right? So it was just a huge adjustment.
Deven Matthews 24:28
But um, and on top of that the thing I’ve heard your people your guests talk about before is the emotional the depression, the sadness, which is out of nowhere, you’re in tears and you’re crying and my wife is saying what’s wrong, Sean Sean and we’ve seen nothing really nothing really backed back up a little bit when I was in the hospital that first night the first night in the ER, after my referee poem and it was like two in the morning I was alone. I just burst into tears and I don’t know if it was fear of the unknown it was what’s going to happen. I was the benefit carrier for our family health insurance. And so I couldn’t just quit soccer game, you know?
Deven Matthews 25:14
All this unknown, how am I going to be a vegetable? I’m going to every conveyor belt loop again, am I going to be able to play piano again? Now it was albums, little things, and I just cried and cried and cried and a nurse walked in and just patted my hand and oh, it’s going to be okay. It’s going to be okay. And I bet no one’s not. But if myself now could tell myself then what it’s going to be like I would, I could explain that not as bad as you think it is. But once I was home, back to that, the emotional ups and downs and rollercoasters, it was hard to be a social, it was hard to be fun, it was hard to be laughy, it was hard to be teasing the kids. It was just very gray in heart. So now the physical but the mental side of everything.
Deven Matthews 26:03
Did you seek out someone to support you with that to help you with that? I talked to my primary care. And her answer was medicine. Well, numerous medicine will be fine. But here’s all the side effects. I’m gonna put my body through anything else, you know. So I decided to just self not self medicate, but self therapy, art therapy and dessert. I got books, I went online, I read a ton of information, including things you had written and posted your branding and things like that.
Deven Matthews 26:37
And people in your podcast and it just, I’ve learned that the emotional and mental depression that comes with the stroke in various levels is kind of a given. And so they can just work through it, it gets better. And clearly today, I’m not as bad as I was two years ago. And 900 Close. It’s really it seems like a two year mark, hey, went over a hump emotionally.
Deven Matthews 27:07
And it’s been so much better. But man, those first couple of years, it was tough feelings of despair and defeat. And, and what you’re doing is hard work, which adds to it, you know, and it was not easy but you get through it what other choice do you have?
Bill Gasiamis 27:27
Yeah, it’s not quite your mindset. Giving up on USA, it’s more your emotional state and perhaps having emotional experiences that you’ve never dealt with before. So you didn’t really have a catalogue of how to overcome it or resolve it. It sounds like your mindset was still pretty upbeat. But your your emotional state was the one that was taking a bit of a was challenged.
Deven Matthews 27:57
Yes, that’s absolutely right. Perfect.
Returning To Work After A Diabetes And Stroke StrokeBill Gasiamis 28:04
At the beginning, when we spoke, you mentioned that Sunday you were getting ready to go to church. How soon after you got back from home? Are you able to get back to church? Well, again, I didn’t want to accept the stroke as a change in my life. I knew it was I now would know it is but I was like, no, just keep going. So I took a couple of weeks off. And then I went to church in a wheelchair. I hadn’t arrived persuaded him wheelchair. And it was good to see people who’s good to be involved. In fact, in all aspects of my life, I try not to let the stroke impact too much what was going on.
Deven Matthews 28:45
Even in my work, when I had my stroke. I am I teach for a living, and a teacher the college actually. And the day after my stroke, I called my boss and I said, Hey, I had a stroke. Ooh, okay, we’ll cancel your classes get you substitutes. I said, No, no, no, no. I have two classes that need on campus once a week. Can I take those classes and just have them online for a few weeks?
Deven Matthews 29:18
And he was like, are you sure? And I said please. He said okay? And then I already had three classes online. So I had five classes all online. And that second night I called the nurse and I said, Can you put me into work shirt and I wrote a tape loop and I sat on my laptop and I taught my classes from the hospital. I didn’t do live lectures. I just would answer the questions and assignments and everything.
Deven Matthews 29:45
And the nurse was like what are you doing? I said working I have to make money someone’s going to pay for the hospital bill right? And she said, this is probably really good for your brain to just kind of keep going keep going into it. Who’s the in a way different than what you are. But I’ll tell you five weeks later, I was back in the classroom, I sent an email to my students. And I said, class, we’ll be back on campus this week. And again, I had my wife take me in the wheelchair, and I lectured from a wheelchair.
Deven Matthews 30:18
And my voice is not the same as it was before most stroke patients or survivors will say that. And so I was speaking slower. And the words were not as fluent as they were in the past, I had graduated speech therapy by then. But you can tell even now, there’s still a little bit of numbness in my mouth, that causes me to talk a little bit funny, but I didn’t let it stop me, I just kept working and working and working.
Deven Matthews 30:48
So once I was home, I still had my desk and everything I wrote, wrote our wheelchair up to never teach, do grades and everything else. And I just kept going in a hope that they would kind of normalize my, my life. And the part that was completely abnormal, would kind of learn a bit it can I think it has.
Bill Gasiamis 31:13
Good, often you’d hear strokes of others say they went back to work too soon. And then they realized that they needed to not do that, and then change things. And it’s good to try and go back as soon as you can. Because that is a sense of getting back to a routine a rhythm to being, you know, to being kind of close to your old identity, and all those types of things, it is good.
Bill Gasiamis 31:38
And, whether you’re up for it or not. Your brain’s gonna be the judge of that, and it’s going to give you the feedback, and it’s gonna say, you went back to work too early, my friend, you need to go home and do nothing. Or, this is good for us. We’re loving it. And it is good. And I love the fact that you did that.
Bill Gasiamis 32:02
I was working from my hospital bed as well, sending emails and making phone calls more than anything. The first time. I was in there for about a week. I wasn’t doing too much, but I was doing enough to kind of keep the business ticking. Because without me there, you know, there’s a business and without the businesses they money.
Bill Gasiamis 32:21
Same reason, right. And then we and then I realized the second time after the second blade, things got worse, and I wasn’t able to work, it was actually counter productive to be at work because it would wipe me out. And I wouldn’t be productive and doing the right things anyway. And it was too risky for me to be at work for several months until things started to improve again.
Bill Gasiamis 32:52
And then I went back to work as quickly as I could, once again, I mean, if we’re not working, even if our pursuits are not our passion, even if our sheets are not you know, the most noble or whatever they are, it’s still great to be able to get up and go somewhere, even if it’s not work for money, even if it’s just volunteering.
Bill Gasiamis 33:17
And I did a lot when I couldn’t work for money. I was volunteering for the Stroke Foundation, I’d go and do presentations on stroke prevention and awareness and know the signs of stroke. And that was that gave you a sense of purpose something to put your shoes on for to get ready for to plan for. And a lot of the times I failed that that as well, I failed because I forgot about a presentation that I needed to do. And then I would get the phone call.
Bill Gasiamis 33:51
Are you on your way to the presentation? What presentation? And then I’d look at my diary. And then I noticed the calendar reminded me yesterday, or reminded me this morning. And still, all of those things weren’t enough to get me there. So like, it’s still good to have something to aim towards to overcome all of this stuff, even if it’s not work. And even if you’re in a bad way, even if you’re really unwell.
Bill Gasiamis 34:23
Whatever it is that you can do it because it kind of uplifts uplifts the soul, allows you to focus on something else gives you a little bit of sense of purpose and a little bit of meaning. And as hard as it is you still got to try and then reassess once you’re in that situation and then make a decision as to whether you’re going to keep going down that path or not. But I think like I think it’s like a bit of a muscle you know, the more you train the brain to get to work and overcome the challenges and be gentle to it and kind to it, the more that you’re helping it rehabilitate, and you’re helping it get better.
Bill Gasiamis 35:06
So how busy are you now? At work at home? Is it the same amount of busyness? Or have you found a way to be a little less busy and more kind of conscious of how much time and effort you’re putting into other things?
Sustainable Busy-ness After A Diabetes And Stroke RecoveryDeven Matthews 35:27
It’s obviously the latter. I mean, it’s I make sure I don’t miss myself and I take time to just make sure I’m taking care of myself and taking care of things that need to be done. Yes, I’m still working, and I love it. But I’d obviously my day is spent more on with my physical well being, well, well, mindedness, if that’s the word, I exercise, I go for walks every single day. In fact, when I was about a month after I was in the rehab rehabilitation hospital, I went by went to a stroke support group, and met a woman who had been error away from her stroke for about two years.
Deven Matthews 36:12
And she said, let me give you some advice, when you run out your insurance stops paying for physical therapy, go out and hire yourself a personal trainer, she said, I’ve done it. And it’s been the best thing ever. And so I’ve done that. And I spend most of my days now, if I’m not with the trainer, exercising myself here at home, but if they’re just going out for a walk, where I walk around my kitchen island, dude, me little Lego hips.
Deven Matthews 36:42
I lay in my bed, do my arm lifts, and I broke my cord. So I spend my time now working out and I bought my physical body so that I can maintain my recovery as well as my health. And so I would say, I’m just as busy to answer your question, Bill, but it’s just doing different things. I’m not so much crazy busy trying to boost my career to this or do that. But I’m just trying to fill my time with other things that are meaningful.
Bill Gasiamis 37:13
Yeah, that makes sense. That’s good. Because there is crazy busy, they’re busy probably the one that’s not useful. Maybe not helpful all the time. But it’s necessary to be crazy busy sometimes. But I think, ongoing, it’s been unsustainable. That is what we’ve seemed to learn. That’s what I’ve learned about that is that it’s unsustainable, and it doesn’t lead to a good outcome, it can often lead to a negative outcome where we ignore the symptoms of stroke and keep going.
Bill Gasiamis 37:53
That’s not good. That’s crazy busy. And then I’m very busy now as well, because I record my podcasts on a Saturday on a Sunday, and sometimes a Friday. Which means that that takes a lot of my time. But it’s pleasurable. It’s fun, you know, I meet people from all around the world, we share common thoughts, values, ideas, struggles, and it’s a completely different version of busy and it gives me back energizes me instead of drains me and makes me tired and makes me unwell.
Deven Matthews 38:26
So let me ask you something. Would you rather be working on your podcast or working on your book? How was that
Bill Gasiamis 38:36
The book is a terrible thing. It’s a terrible thing. I’ll tell you why. Because you have creative blocks. And I would consider myself a creative, but I never went down the path of creating something like a music track, or a novel or anything like that. I never did any of those things, even though it was obviously in me. And the problem that the book caused was, when I wasn’t writing, I was always thinking about the fact that I wasn’t writing.
Bill Gasiamis 39:10
And when I was writing, and couldn’t write, I was frustrated because I really desperately wanted to write, but I couldn’t write. It’s such a cruel, cruel thing to do to somebody. And, as a result of that, by drag that out for two years, the writing part of it I dragged out for two years. The research part was two years, but that was more enjoyable, more pleasurable.
Bill Gasiamis 39:39
And that was more about trying to find the pattern, trying to understand things, to make the idea that stroke was the best thing that happened to me like interesting and to make it something that people would be curious about, interested to read, to not be confronted by the fact that I said that about a stroke.
Bill Gasiamis 40:04
So that part was a really cool part because there was nothing to do other than think about it. It was all just, you know, listen to somebody’s story, think about it, develop the idea, and then just sit with it, let it just bubble away. But then it was putting pen to paper.
Bill Gasiamis 40:22
And what happened is, of course, is, then I go through all those other things like, like being conscious of the fact that I am not a literary type. I don’t write for a living, I don’t know how to write properly. Is this going to be good enough? Who am I to write a book? Why would I write a book? Who’s going to want to read my book? When they do? It’s probably going to be terrible anyway.
Bill Gasiamis 40:49
I went through all of that stuff. So I wouldn’t change it for anything. I would I love occupying my time writing the book. But it’s more fun. Interviewing people having podcasts because there’s nothing to do afterwards. It’s just to edit it and make it live. It just gives back. That’s it. There’s no it’s not hard. It’s not difficult for me to overcome. That’s interesting.
Deven Matthews 41:22
We’ll you’re doing amazing. That’s, that’s absolutely true.
Bill Gasiamis 41:25
Yeah, thank you. I think it is amazing. I mean, the guy that I was before, stroke doesn’t do any of these things. Like I am very aware that I am not the same person, I am out of like I’m an evolved version of myself. I’m completely aware of it. And I’m not trying to say that I’m perfect. In every way. I’m not, I’m just doing things that I love that are different.
Bill Gasiamis 41:52
I would have spent many Saturdays working. And I won’t spend a Saturday working for the rest of my life, if I can manage it like I’m dead against it. It means that you miss out on a little bit of extra money, and all that type of thing, but it’s okay. I’ve done enough work. And I do enough hours Monday to Friday where I think I would be grumpy if I had to go to work six days a week, every week, you know, and I’d be the same guy I was that I didn’t like before the stroke. You know, what’s the point of that? I didn’t want to be that guy.
Deven Matthews 42:35
Right.
Bill Gasiamis 42:38
So what’s it like? When the kids kind of work out that you’re unwell and the young one, eight years old, probably a difficult conversation. 23 year old, probably different for another reason. How do you navigate all those conversations with the kids and so many different personalities?
Deven Matthews 43:01
Again, I had to give most of the credit to my wife, she’s amazing. She’s just an amazing woman. But yeah, the older kids were scared. The younger ones are scared for different reasons. And now they’re really adjusted, my physical therapist asked me how, like on my third bracelet with them, she said, How would your youngest one dealing with you having a stroke?
Deven Matthews 43:30
Matt said, I think he’s I mean, he’s eight, he just kind of accepts it either. So he’s afraid Daddy may die that he knows, I’ll die someday, you know. But um, he said in his experience as a physical therapist, when the stroke survivor has young kids looks, those kids gained a keen awareness of disabilities, and differences in people and acceptance. And that was like a best. It’s something I never ever would have thought of before.
Disability And FaithDeven Matthews 44:03
And so now I try and watch my younger because I have now he’s 10 the second one. The second thing is is 15 I watch them and they’re just so they know I take a little extra time to get in the car. But no, I think he’s trying to you know, get out of the house or take a shower or whatever. But they’re just fine with it because it’s part of their life. And so hopefully that will extend it outside of the artist immediate circle.
Deven Matthews 44:32
Not other children wouldn’t feel that way. But with my younger two who are still at home in figuring out what to do to those who are at home now. They’re much more accepting of the disabled person. I think not many others aren’t but they exist. They’ve never done this yet, but it’s more about commonplace thing.
Bill Gasiamis 44:53
The less ignorant.
Deven Matthews 44:55
There we go. That’s perfect. Yes.
Bill Gasiamis 44:57
And we were more ignorant, and not through our fault, our own fault, like, it’s just the way it was, you never came across it and you didn’t know. And then I had to be in a wheelchair for an amount of time. And then I realized what life’s like being in a wheelchair. And even though it was a short amount of time, it gave me a very deep understanding of the difficulties that people face on a daily basis. And the need and my needs increased, you know, had more needs more, needs to have other people support me, help me, etc.
Bill Gasiamis 45:34
And I have often said this in the podcast, but it always sounds terrible when I say but I always just thought people in wheelchairs were just sitting down. You don’t connect the reason that they’re sitting down to anything, because I’ve never had that experience. So I never understood the emotional difficulties with being in a wheelchair, the mental difficulties with being in a wheelchair, the physical disabilities with being in a wheelchair, or the challenges that somebody in a wheelchair has to overcome, like, when somebody is able bodied. Everyone complains about our how hard things are, and all the challenges and all the problems and all the things.
Bill Gasiamis 46:23
And then somebody who’s in a wheelchair is already, you know, recovering from potentially a stroke or something like that. So they’ve got a lot to deal with because of the stroke. And now they have all this physical stuff that they’ve got to overcome. So not only have they been given this neurological condition, now they’ve got overcome with a neurological condition or the physical aspects of the challenge, right? So it’s like, completely out of balance, the amount of challenges that somebody
Bill Gasiamis 46:55
you know, with a with a stroke, who’s in a wheelchair has to overcome is so out of balance compared to people who are not in there. And it’s like, okay, now you can be Bill, you can be a little more empathetic, a little more patient a little more understanding, and lived experience makes the world of difference. And that’s kind of what your youngest have got. They’ve got a very amazing lesson, something that’s going to really make a positive impact to the way they navigate the world. It’s important.
Deven Matthews 47:36
Exactly.
Bill Gasiamis 47:44
How good would it be to learn all those lessons without somebody you love going through stroke, but sometimes it’s the only way to learn.
Deven Matthews 47:52
Right? Absolutely.
Bill Gasiamis 47:55
So remember those early days when you had the depressive symptoms and all those other challenges? How your self healing? Did you draw on your religious views, beliefs to help guide you with overcoming those challenges? How did the role that your church played in your life support in that space?
Speaker 1 48:28
Well, absolutely a huge, a huge portion. I mean, every day, a basic Christian belief in Jesus, the resurrection, the atonement, things that kept me moving, the promise of a Sunday, perfect body. Those beliefs really helped me move along. And regardless of what I’m facing in this life, as far as disabilities are inabilities is when they will be taken from me.
Speaker 1 49:00
On top of that, on top of the basic religious belief that is in my core, or the, the mental thoughts of a better existence now, okay, I can’t change that I had a stroke. I can’t change the verb awkward. The lender I talked about New York, I can’t put the piano. What can I do? Years ago, I used to listen to talk radio before podcasts before the internet, you know, and there is this silent psychiatrist psychologist who would tell a story that you might have heard before I might have heard even on the show about a boy who goes to his grandfather and his grandfather says, you know, son, how is your life? How is your relationship with your friends, your parents, how are you doing? Like, being good, the bad how how’s that going on?
Feeding The “Recovery Tiger” vs. The “Self-Pity Tiger”Deven Matthews 49:55
And the boy looks with grandpa and said, it’s hard. I want to make good boy, a good Christian, if you will. But there’s another part of me that wants to be kind of bad. And sometimes I want to do the right thing and tell the truth and do both like grade school to admit, sometimes I’m lazy and wonder why this and that, and the little boy, he was just so you know, exasperated, he said, it’s like, there’s two tigers inside of me, and they’re fighting. And the good Tiger wins within some of the bad Tiger winds.
Deven Matthews 50:26
And he looked at his grandfather, and he said, Grandpa, which one is going to win. And the grandfather in his wisdom said, the tiger that wins is a tiger that you feed, whichever one you feed is going to win. And I love that story. It can be applied to so many things. And so once I had the stroke, and I was just thinking or meditating, the thought came in my head, I thought, okay, there’s two tigers inside of me right now, the recovery tiger that wants to get up and walk and not be in pain and just get over this thing.
Deven Matthews 51:00
And, then there is the self pity Tiger. And the one must lay in bed and cry and know, for me why this happened to me. And those are the two tigers that I think still today, two years, three months out, I’m still fighting. I think everybody fights those two tigers, it’s some way in their life, I’m just leaving it to stroke. So for your stroke survivors sort of listen or listening to this.
Deven Matthews 51:25
Think about that is a recovery, Tiger winning, or is your self pity, Tiger winning, because the one that’s gonna win is the one you feed. And so with my faith in God, and my religious beliefs, I can take that level the tigers, and fight knowing that what I do is going to make a difference in my recovery and in my mindset, and then I ability to move on with life. And yeah, there’s still sad days.
Deven Matthews 51:55
Yeah, there’s still sub periods. Yeah, there’s still as a thought, Why did I have a stroke? You know what, those other fat guys out there, they don’t have strokes and things like that. But in the end, how I see my Tigers is how I’m going to win. So when I get up, and I go for a walk, and I worked out for a half hour, and then I worked on the computer for school or read article, whatever it is, I’m fighting, I’m feeding the recovery Tiger. And that, I think, is the message that every stroke recovery person should consider feed the Tiger can recover, not the other one.
Bill Gasiamis 52:34
I love that. And the easy way to do that is the more time you spend feeding the recovery Tiger, reading a book listening to a podcast, understanding how to overcome your challenges, you know, rehabilitating yourself physically, emotionally, mentally, then there’s no space for the other Tiger. There just isn’t. And then the other one just kind of whittles away. And every once in a while it kind of tries to pop up and say hello. And it’s like, I heard what you had to say, I’m not interested in the rest of the conversation.
Deven Matthews 53:13
Exactly, exactly. I like what you said about educating yourself listening to podcasts, your podcasts when I listen to Iraq’s but even joining support groups. I have an online stroke support group that we meet every single week. And it’s just sometimes I go and I don’t say anything, I just kind of listen, sometimes I chime in, but it just gives you hope.
Deven Matthews 53:38
That there’s people out there that are going through a year going through and they can understand you. I have a very dear friend who is a he goes through he is a recovering alcoholic and drug addict and he attends Alcoholics Anonymous wins. And he compared his recovery to mine recovery. And he said I had an addiction. I had major problems. I had things I couldn’t overcome. Just like Deven, you have things you’re trying to overcome and you can’t, but you meet with these people who also have the same exact, I’ll say problems.
Deven Matthews 54:15
I don’t like that word, but the same exact situation that you have, just like he goes meet some of these people that have the same problems. He has again at Adisa word. And he says there’s just a great spirit of unity, where you can look at these people and say, okay, they did it, I can do it. Under they can do it that type of thing. And that beads that tiger again, like you said, pretty common.
Bill Gasiamis 54:40
Yeah, it’s community. There’s no point hanging around with the people who are not for recovery or not supporting recovery or not chasing recovery or not going after recovery. Because, you know, that’s they’re going to encourage you to go down that path of feeding the other tiger in the book, there’s a chapter about creating your right community building the right community, I call it a recovery community. And when I was researching that chapter, I found a book that was called connected.
Bill Gasiamis 55:15
And the book had amazing research done by two scientists. And we’re going to, I want to lower the book and I want to make sure that anyone who’s listening might be able to find that if they want connected the book, I’m just Googling it okay, is called Connected. And it was by two amazing scientists, I think there were psychologists or in that space. One of them is called Nicholas Christakis. And the other one is called James Fowler.
Bill Gasiamis 56:01
And what they discovered is that there’s this saying, you may have heard, you hear a lot in the personal development world, you’re the average of the five people that you are, spend the most time with. And it’s, it’s only part of the picture, what they have found is that you’re also the average of the five people that those five people spend the most time with. And then it goes one layer back, that those five people spend the most time with. So by the time you spend one week with the five people you spend the most of the time with, you’re actually being influenced by about 125 people.
Bill Gasiamis 56:52
And that’s really important to know, because if you’re a diabetic, who also has high blood pressure, and you continue to hang out, in places where people eat too much McDonald’s or drink too many sodas, and you’re trying to break the habit, it’s a lot harder to break the habit, because the community that you hang out with, could be amazing people could be fantastic company, but could be also making it a lot harder for you to break those habits. And then, with regards to the other parts of recovery, it’s the same thing.
Bill Gasiamis 57:33
If you’re hanging around people who are downers all the time, who are negative, who focus on problems, who complain who when to moan, then you’re more likely to be influenced in that way. And what they say is, you don’t need to cut people off and just forget they ever existed, what you need to do is just move, move your time, the time you allocate to another community where it’s more uplifting, supportive, encouraging, where they understand you where they’ve been through what you’ve been through, where they can shine the light.
Bill Gasiamis 58:08
And that’s what a support group does, right? That’s exactly what the stroke support group does. A group you never knew of you never hung out with you never attended, all you’ve done is shift a few hours a week, and you’ve just allocated into there, all of a sudden, now you’re speaking with one person, and that one person is influenced by a whole bunch of other people above them.
Bill Gasiamis 58:33
And they’re potentially all going through something similar or recovering. And you’re getting, you’re getting a quicker path to recovery, because now you’re being influenced by the people who are supportive of a recovery, so you can very easily shift the balance without a lot of energy toward recovery, just by changing the small component of time that you spend in this new space instead of the old space.
Bill Gasiamis 59:09
And churches are great for that, stroke forums, online communities are good for that. What I love about the church is faith, regardless of whether or not you’re very religious, whether you believe in Jesus, whether you believe in God and any of those things.
Bill Gasiamis 59:27
That word faith, I think, is a really important word. Because if you learn faith in a religious setting, to break it down just for the sake of conversation. Very basically what we’re being told is to believe in something that happened 2000 years ago, or the good of humanity, and also to believe in something that we can’t see God.
Bill Gasiamis 59:51
And there’s a whole bunch of learning and lessons that come with that, that if you do this, then you get that result. If you do that, you’ll get that result and it’s kind of like guiding light for how to get great outcomes in life. And I think without religion, I’m not sure if faith can be practiced so deeply, if you can practice faith without that foundational part of faith that religion kind of requests of you or asks of you or makes you go to.
Bill Gasiamis 1:00:24
And if you could take faith and develop your faith in your recovery, even if you can’t see it in the future, even if you don’t believe that will happen, even if you don’t know what the future holds, but you have faith that it could happen, and that it’s worth going after, then you might manifest it, like it might occur. It’s a good thing to put your faith in a potential, your own self, to be able to overcome all the challenges and be the kind of person that you want them to be, even if it’s hard, if you’ve never believed in yourself before might be a good time to start practicing faith.
Speaker 1 1:01:07
Right. And I think even little acts, along with the science, like doing what your physical therapist tells you is paid, because you don’t know the result, you can’t see that this is going to happen because this, you just trust Him. They had faith in her and they do what they say, you know, I was at physical therapy once. And my therapist was helping me on notice something. And there was another guy in the room working with his therapist, and he just shouted at her. I can’t stand up, you don’t know what it’s like you never had a stroke was like battling against her.
Deven Matthews 1:01:43
And I couldn’t understand that mindset. I was like, Dude, she is trying to help you do what she says. So, again, I don’t know if it was my faith that I have before the stroke, or what if a doctor tell me to do something, I get it because I thought, okay, they do this for a living, when school for this, they work with these people, they know if I do X, Y will be the result. And so I’m gonna do it. And so I still do that. I mean, I’m not fully recovering that hopefully one day, but I’m still doing X, Y, Z, because I hope that the results are what they want.
Bill Gasiamis 1:02:18
I love what you said about that it is it’s faith in other people. And it just reminded me of something that we do have, we do practice faith all the time, every time you jump in the car and go for a drive, you have faith that the other person is going to stay on this side of the white line.
Bill Gasiamis 1:02:40
And they’re going to stop at the red light. And they’re gonna give way when they need to give way. And I have to say that in my time of driving, I’m gifted this year, a very high percentage, and more than 99.999% of the time people have done exactly what I had faith in them that they would do, which is stay in the right side of the road and break when they needed to and stop at the stop sign and give me way.
The Hardest Thing About Diabetes And Stroke For Deven MatthewsBill Gasiamis 1:03:12
So it is a fascinating thing we do practice it more often than we think. And when you get on public transport, you have faith that it’ll turn up that it’s going to take you to your destination. Okay. So there you go that’s a great way to think about it. I’m wondering, Devin, what was one of the hardest things about stroke for you?
Deven Matthews 1:03:37
Hardest? Losing my ability to play the piano for sure. I still will cry about that I will go to church now and hear the organ playing and just weep because I used to be able to do that. And I loved it. I mean, it was my passion. I loved playing the piano and playing the organ and I haven’t lost it. I still do it. But it’s just not quite the same one handed. There’s plenty of concertos and pieces out there for one handed piano, but it’s not the same. So by far, there’s been losing that ability.
Deven Matthews 1:04:15
Again, I just keep plowing because I can’t change that and I don’t want to sit in dark room and cry because that won’t solve anything. But I can do my exercises or fingers or my hands and maybe someday looking back. I’m hoping I see other stroke survivors were further ahead than I am to have full use of the hands and there’s even some things we’re looking into to assist medically and technologically and stuff like that. And I’m we’re doing all I can’t I want to do everything I can to get it back.
Bill Gasiamis 1:04:52
Yeah, I love the medical assistance is important to go after if you can manage it. We recently did an interview about That eternacept injection that is been widely discussed, especially for people living in the United States, which is a medication that gets used for reducing inflammation in people with rheumatoid arthritis. And what they found was that it improves some neurological conditions for some people, not for everybody.
Bill Gasiamis 1:05:23
And I did an episode probably about five or six episodes ago, where I interviewed somebody who flew from New Zealand to Florida to chat with Dr. Tobinick, to have the injection and had a positive result went from not being able to work to being able to work and teach again. And then there’s also some people that have had the injection and it hasn’t worked for.
Bill Gasiamis 1:05:48
But then I also interviewed a gentleman, Dr. Amir Hadanny, who does scientific research hyperbaric oxygen therapy, and some of the positive results that they received with that. Now, none of these procedures are cheap, none of them are cheap, but they’re worth knowing about what people in future in case, people who can’t manage it, fondant now might be able to manage it in the future.
Bill Gasiamis 1:06:19
So that’s really good. And then there’s also those robotic devices that you can invest in to put on your hand to help train it to open and close and develop new neural pathways and see if that can help. Are you able to talk about any of the things that you’re considering or thinking about?
Deven Matthews: FDA-Approved Neurostimulation Device For Stroke RecoveryDeven Matthews 1:06:44
Yes, well, I have a Bioness. For my leg, it shoots out electronic, maybe you’re familiar with Bioness. I have a stamp machine I use on my hands that same bundle using a machine. But I don’t know if you’ve heard much about Vivistim it is a device input, the inserts, I guess, better word are back on your collarbone, the opposite side of your affected side. And it connects to a nerve in your brain that operates your arm.
Deven Matthews 1:07:40
And then from what I read, there is very milk and remote control that a therapist uses to stimulate the arm and make it work. And the results are amazing. YouTube has tons of videos before and after. And so on going down to LA next month for a consultation to see if I can get that done that fight with my insurance company will then listen and pursue that to see who pays for it. But we’re going to look into that to see if it’s something that’s worth it.
Bill Gasiamis 1:08:19
That’s a great idea. What’s the procedure called?
Deven Matthews 1:08:22
I don’t know the procedure, but the name of the thing is Vivistim. The FDA has approved it. And they’ve had remarkable success with people who have seizures, or epilepsy and other reasons, other reasons for seizures, but they started applying it to stroke survivors. And again, success.
Bill Gasiamis 1:09:01
So here it is, it is a Vivistim is the first FDA approved neurostimulation device to pair VNS with your rehabilitation therapy and daily activities. The pairing helps strengthen the brain connections needed to improve hand and arm function. It’s the only system of its kind and it is proven safe and effective.
Bill Gasiamis 1:09:26
Okay, so that doesn’t tell me much, but I understand what it does. It’s one of those stimulation devices like you what’s similar in a way to the Bioness. That’s what the Bioness does, but for the leg. So yeah, excellent. Well, I think people will be interested to hear about that. So maybe they’ll get curious and start Googling it as well.
Lessons From The Diabetes And Stroke StrokeBill Gasiamis 1:09:59
What’s something that stroke has taught you?
Deven Matthews 1:10:06
I saw on your Instagram page, I saw this and I commented on it is that don’t believe your doctors. I’m telling you two things happened that were just devastated in the ER. The first was the doctor came in and said, Okay, you’ve had a stroke, you have six months, wherever you’re at six months, that’s where you’ll be the rest of your life. And it scared me to death.
Deven Matthews 1:10:31
Again, no experience with stroke, no family with stroke, nothing. So I didn’t know. So that was my first strike. Second was my brother came and saw me in the hospital. And he said, Hey, Devin, we know this lady, and she had a stroke. And four months later, she was back to normal, perfect. And that was take four months, okay into this for four months, and four months came environment, and then six months, and it’s false hopes.
Deven Matthews 1:10:59
And so the doctor that said, six months. And then on the opposite end of the scale, my brother that I said four months, we’re both very difficult lessons. For me. The lesson is, each stroke survivor has his own recovery, there’s no rubber stamp, there’s no normal, it’s all individual, because the brain is so individualized. And the damage that’s done, whether from a hemorrhagic or from ischemic is so individualized, so my own brain is recovering on my own time. And that six month garbage? No, I don’t know why doctor saying that. I don’t know why.
Bill Gasiamis 1:11:43
Yeah, I don’t know why either. Your brother was trying to do the right thing as well, wasn’t he? He was trying to encourage you and tell you.
Deven Matthews 1:11:53
Yes. He wasn’t being mean or anything. And history’s true stroke four months. She was fine. Great. Good for her.
Bill Gasiamis 1:12:04
Yep. What would you say to stroke survivors who are listening that might be going through their own struggles at the moment.
Deven Matthews 1:12:14
Again, don’t feed the pity party Tiger, feed their strong Tiger, be the tiger you want to win? Thank goodness, in my stroke support group. It’s on Zoom. So let’s see just the basis of all this people from all over the world actually. And some people are, they just look sad, because look, defeated, that look like they’re not going to win every comment or their mouth is negative. And I know it’s easy to feel that way. I know you’ve had a brain bleed, you now have a stroke in your mind just slips into that depression sometimes.
Deven Matthews 1:12:51
But my goodness, you got to keep positive and you’ve got to keep going. If my if I could go back to myself two years ago, what would I say to him, I’d say just play it, it gets better. It gets better, it gets better. And it doesn’t seem like it’s going to so that started to take any stroke survivor. At the rehab hospital, I actually was in for three weeks. They have a program where stroke survivors go and visit patients in the hospital that have had a stroke. And I’m in the process of signing up to do that and get it all the releases and everything. But that’s going to be my message is just wait it you two years from now can talk to you. They’ll tell you just hold on. If it gets better, it gets better.
Bill Gasiamis 1:13:41
Devon, thank you so much for reaching out to be on the podcast. Thank you for your comments on my Instagram page. I really appreciate you sharing your story. Best of luck with everything.
Deven Matthews 1:13:52
Thank you. Thank you and to you your book, everything, congratulations. This has been a pleasure. I enjoyed it.
Bill Gasiamis 1:13:58
Well thanks again for joining us on today’s episode, I do hope you picked up some useful bits of information from my chat with Deven. If you’re interested in my book about stroke recovery, you can grab a copy on Amazon by visiting recoveryafterstroke.com/book. To learn more about my guests including links to their social media and to download the full interview transcript head over to recoveryafterstroke.com/episodes.
Bill Gasiamis 1:14:26
A huge thank you to everyone who has left a review it means the world to me. Reviews are crucial for podcasts to thrive and your feedback helps others find this valuable content making their stroke recovery journey a little easier. If you haven’t left a review, please consider leaving a five star rating and a few words about what the show means to you on iTunes or Spotify. If you’re watching on YouTube, leave a comment below, like the episode and subscribe to the show on your preferred platform to get notifications of future.
Bill Gasiamis 1:14:59
Besides, if you are a stroke survivor with a story to share, come and join me on the show. The interviews are not scripted, you do not have to plan for them. Just be yourself and share your experience to help others in similar situations. If you have a commercial product that supports stroke survivors in their recovery, you can join me on a sponsored episode of the show. Just visit recoveryafterstroke.com/contact fill out the form and I’ll get back to you with details about how we can connect via zoom. Thank you once again for being here. Listening participating. I truly appreciate you see you on the next episode.
Intro 1:15:39
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Intro 1:16:34
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Comprehensive Guide to Thalamic Stroke: Symptoms, Treatment, and RecoveryIntroductionThalamic stroke is a type of stroke that affects the thalamus, a small but critical structure deep within the brain. The thalamus plays a crucial role in relaying sensory and motor signals to the cerebral cortex and regulating consciousness, sleep, and alertness. Understanding thalamic stroke is essential for patients, caregivers, and healthcare professionals to ensure prompt diagnosis, effective treatment, and optimal recovery.
Understanding Thalamic StrokeWhat is a Thalamic Stroke?A thalamic stroke occurs when the blood supply to the thalamus is interrupted, leading to tissue damage and loss of function in this vital brain region. The interruption can be due to an ischemic stroke, where a blood clot blocks a blood vessel, or a hemorrhagic stroke, where a blood vessel bursts and causes bleeding in the brain.
Symptoms of Thalamic StrokeThe symptoms of a thalamic stroke can vary widely depending on the specific area of the thalamus affected. Common symptoms include:
- Sensory Disturbances: Numbness, tingling, or a burning sensation on one side of the body.
- Motor Impairments: Weakness or paralysis, typically affecting one side of the body (hemiparesis or hemiplegia).
- Pain: Thalamic pain syndrome (Dejerine-Roussy syndrome), characterized by chronic pain on the side of the body opposite the stroke.
- Cognitive and Emotional Changes: Memory problems, confusion, emotional instability, and difficulty with attention and concentration.
- Vision Problems: Partial or complete vision loss, or visual field deficits.
Causes and Risk FactorsThe primary cause of thalamic stroke is the obstruction of blood flow to the thalamus. Risk factors include:
- Hypertension: High blood pressure is the most significant risk factor for stroke.
- Diabetes: Increases the risk of blood vessel damage and stroke.
- Atherosclerosis: The build-up of fatty deposits in the arteries can lead to clot formation.
- Heart Disease: Conditions such as atrial fibrillation can cause blood clots that travel to the brain.
- Lifestyle Factors: Smoking, excessive alcohol consumption, obesity, and lack of physical activity.
Diagnosis of Thalamic StrokeDiagnostic ProceduresEarly diagnosis of thalamic stroke is critical for effective treatment. Diagnostic procedures include:
- Physical Examination: Neurological assessment to evaluate sensory, motor, and cognitive functions.
- Imaging Studies:
- CT Scan: Quickly identifies bleeding in the brain.
- MRI: Provides detailed images of brain structures and can detect smaller strokes.
- Blood Tests: Evaluate overall health and identify risk factors such as high cholesterol and diabetes.
- Electrocardiogram (ECG): Detects heart abnormalities that could lead to stroke.
Treatment Options for Thalamic StrokeAcute TreatmentImmediate treatment aims to restore blood flow and minimize brain damage:
- Thrombolytic Therapy: Clot-busting drugs such as tPA (tissue plasminogen activator) are administered within the first few hours of an ischemic stroke.
- Endovascular Procedures: Mechanical thrombectomy to remove a large clot in cases where thrombolytic therapy is ineffective.
- Surgery: In cases of hemorrhagic stroke, surgery may be necessary to repair damaged blood vessels and relieve pressure on the brain.
Rehabilitation and RecoveryRehabilitation focuses on restoring function and improving quality of life:
- Physical Therapy: Exercises to improve strength, coordination, and mobility.
- Occupational Therapy: Assistance with daily activities and strategies to adapt to physical limitations.
- Speech Therapy: Helps with communication difficulties and swallowing disorders.
- Pain Management: Medications and therapies to manage chronic pain from thalamic pain syndrome.
- Psychological Support: Counseling and support groups to address emotional and cognitive changes.
Prognosis and Long-term OutlookThe prognosis for thalamic stroke varies based on the severity of the stroke and the promptness of treatment. Many patients experience significant recovery with comprehensive rehabilitation, although some may have lasting impairments. Regular follow-up care and management of risk factors are crucial for preventing recurrent strokes.
Prevention StrategiesLifestyle ModificationsAdopting a healthy lifestyle can significantly reduce the risk of thalamic stroke:
- Healthy Diet: Rich in fruits, vegetables, whole grains, and lean proteins.
- Regular Exercise: At least 150 minutes of moderate-intensity exercise per week.
- Smoking Cessation: Quitting smoking reduces stroke risk.
- Alcohol Moderation: Limiting alcohol intake to moderate levels.
Medical ManagementManaging underlying health conditions is essential for stroke prevention:
- Blood Pressure Control: Regular monitoring and medication adherence.
- Diabetes Management: Keeping blood sugar levels under control.
- Cholesterol Management: Medications and dietary changes to lower cholesterol.
- Anticoagulant Therapy: For patients with atrial fibrillation or other heart conditions.
ConclusionThalamic stroke is a serious medical condition that requires prompt diagnosis and treatment. Understanding the symptoms, risk factors, and treatment options can significantly improve outcomes for patients. With comprehensive rehabilitation and lifestyle modifications, many individuals can achieve substantial recovery and improve their quality of life.
Thalamic Stroke Recovery Interview with Jenn WilliamsJenn Williams discusses her thalamic stroke recovery, the risks of the contraceptive pill, and the importance of self-advocacy and resilience.
Instagram
Recrudescence of Deficits After Stroke
Middle People Project
Brain Injury Association Of America
Highlights:
01:52 Introduction
02:48 The Beginning Of Thalamic Stroke Recovery Journey
16:20 Self-advocacy For Medical Care
35:36 Post Thalamic Stroke Recovery And Deficits
43:02 The Middle People Project
51:47 Pain Management And Personal Growth
1:08:50 Insomnia Causes And Solutions
1:17:14 The Hardest Thing About Stroke
1:28:16 Thalamic Stroke Recovery, Grief, And Resilience
Transcript:
Bill Gasiamis 0:00
This episode of the podcast is brought to you by headbed.com.au. Hey everyone. Before we dive into today’s episode, I wanted to share something special. In Episode 305, I interviewed Catherine Randabel, the inventor of HeadBed, a product revolutionizing hair salons, especially for stroke survivors.
Bill Gasiamis 0:21
The HeadBed provides excellent neck and head support during hair washes, reducing strain and promoting better blood flow. For stroke survivors. This means lowering the risk of arterial damage and easing concerns about another stroke. It ensures a safe and enjoyable salon experience and I’m thrilled to support a product that aligns with my mission of stroke prevention and safety.
Bill Gasiamis 0:47
In our interview, Catherine explained how the HeadBeds ergonomic design prevents neck hypertension, a common issue increasing stroke risk. With the HeadBed you can feel confident and comfortable at the salon knowing your health is prioritized.
Bill Gasiamis 1:04
If you’re a stroke survivor or know someone who is HeadBed is a must have for your next salon visit, check out episode 305 for my full interview with Catherine and learn how this product can make a difference. For those in the United States visit head bedusa.com to get yours today and to enjoy peace of mind at the salon.
Bill Gasiamis 1:27
Now I’d also like to mention my book, The Unexpected Way That A Stroke Became The Best Thing That Happened. 10 tools for recovery and personal transformations. If beaches inspiring stories from 10 stroke survivors and offers hope for those on the road to recovery. For more information visit recoveryafterstroke.com/book or search for my name Bill Gasiamis on Amazon.
Introduction – Jenn Williams
Bill Gasiamis 1:52
Now this is episode 309. And my guest today is Jenn Williams, who at the age of 33 experienced a left thalamic ischemic stroke. In this compelling episode, Jenn shares her incredible journey of thalamic stroke recovery, detailing the early symptoms and the misdiagnosis. And the moment her life changed forever.
Bill Gasiamis 2:14
Jenn also discusses the emotional and physical challenges of recovery, the risks associated with taking the contraceptive pill, and the importance of self advocacy. She highlights the impact of gratitude, community support, and how she has turned her experience into a mission to help others through her work with the Brain Injury Association and The Middle People Project. Jenn Williams, welcome to the podcast.
Jenn Williams 2:41
Thanks for having me.
Bill Gasiamis 2:43
Thank you for being here. Tell me a little bit about what happened to you.
The Beginning Of Thalamic Stroke Recovery Journey
Jenn Williams 2:48
So it was 2016. And I was working as an insurance agent in a busy office and my wrist and my hands on my right side kind of got that feeling like it was falling asleep while I was at work. And I kept trying to shake it out like you do when your arm falls asleep or something and it wasn’t working. I made a very poor joke now looking back to my coworker and said if I die, this is how this started.
Jenn Williams 3:19
Yep. So the next day, I had that same tingling in my foot on the same side and half of my face. So I got into see my primary care. And she said, you know, we’ll run some blood tests, it could be a mineral deficiency, you know, all this other stuff. There was some miscommunication on what the tests were supposed to be.
Jenn Williams 3:45
So I went in and out a few times. I believe that was a Tuesday when that all started. And then by Friday of that week, the tinkling was my whole right side. So I had a follow up the following Thursday, and my husband was meeting me at the appointment, he was taking some time off from work, because we didn’t know what’s going on and I wanted some support.
Jenn Williams 4:08
And I drove from my house to the appointment. And by the time I got there, I didn’t feel good at all. I don’t feel right, my stomach is turning, I’m dizzy. I went to go get out of a car and I fell onto the hood of the car and my husband was like what is happening right now? We went into the appointment and she said, we’ll order some tests. You know, we’ll give you a call and let you know.
Jenn Williams 4:35
And during this appointment, my husband called his mother to come get my car because I said I don’t feel safe driving. There’s something going on. And in the 10 minute ride that it took to go from the doctor’s office to my house I was paralyzed. And I don’t know about you but I was raised to believe you know the doctor is the end all be all.
Jenn Williams 4:58
That’s what they do. That’s what they you know, you believe what they say. So I looked at my mother in law, and I said, It’s okay, I’ll just wait for the doctor. And she screamed and said, This is not okay. And she took me to the ER. And they found that I had had a left thalamic stroke, ischemic so clot.
Jenn Williams 5:22
And I was in ICU for about three days, they wanted me to go to inpatient rehab. But my family and friends were like, we’re not doing that we’re not going to do inpatient, we’ll just help you at home. So I was fortunate enough to go home after leaving the ICU. And I had a lot of support for those three weeks.
Jenn Williams 5:41
But as many brain injury survivors know, there’s a lot of tests and things that proceed after that. And there was no real issues that they could determine no clotting disorder, no high blood pressure, no diabetes, nothing like that.
Jenn Williams 6:00
So the general idea is that it was caused by medications, I was taking contraceptives and migraine medications, which both have those dangers, and family history, there is some family history. So definitely not what I expected in my life, at age 33. At the time. But it’s been a really educational incredible experience.
Bill Gasiamis 6:26
Yeah, you know, you’re not the first person I’ve interviewed who was taking a contraceptive. There’s, I dare say there’s at least another two or three and younger as well, kind of in their 20s. And what’s interesting is when I asked them did you know about that risk? They all said no.
Bill Gasiamis 6:54
And even if they did, no, I’m not sure that it would have changed anything if they were told, by the way, this medication has this risk, but I don’t know if it would have changed anything. Because I know sometimes contraceptive pill is taken for non contraceptive reasons. Yeah, so were you aware that it was a risk that came with taking the contraceptive pill?
Jenn Williams 7:24
Yes, I didn’t know I started when I was in high school. And I didn’t realize at that point, but then as I got into adulthood, I started reading those packets that they give you when you leave the pharmacy. And I honestly, I think it was one of those things where I said that’s for old people. That doesn’t happen to young people.
Jenn Williams 7:43
That’s not going to happen to me. And, you know, I was on contraceptives for 25 years. And I just assumed it wasn’t going to happen to me. Yeah, but I can I kind of go on a tangent. Is that okay? One of my biggest frustrations, this whole process has been the realization that a significant percentage of the population has clotting disorders.
Jenn Williams 8:13
And we just prescribe medications, especially contraceptives, we just prescribe them to young girls, and we don’t check for those things. And that makes me so scared for our general population, but scared for like my nieces. That I mean, that’s a horrible. I mean, yes, I’m grateful for it in so many ways, but it is a really horrible experience. And I don’t wish that on anyone. And I don’t understand why we don’t check people for things like that. Before we prescribe medications.
Bill Gasiamis 8:44
I love that because that’s the biggest issue is these know, what’s the word? There’s no kind of investigative work done. Yeah. Before somebody says you should take this. I mean, I know even my father in law, who’s in his 80s. He’s on like, 55,000 medications. But when even though he’s on so many, nobody still does the whole, I wonder if this is going to be appropriate for you to take because that might interact with that and that might do that and that.
Bill Gasiamis 9:18
And my wife, she’s a bit of a how can I describe her? She’s a bit of a like a detailed freak, like she does details about things that most people would just roll their eyes out, right? It’s just her nature. She’s very thorough, and all that type of thing. And if it wasn’t for her dad would be taking medication that instead of lowering his blood pressure is making it worse or you know, they’re giving him stuff that works with the blood pressure medication to lower even further.
Bill Gasiamis 9:57
And she’s the one doing the research and he’s been in the system forever. And and it’s really scary to be a family member and to put all your trust in the medical system and not question it. I think that’s kind of a little bit of putting your head in the sand kind of scenario. And I was trained like that as well, when there was something wrong. My parents took me to the doctor, and whatever the doctor said, what we did, and thankfully, all worked out well. But if I took that approach, when I went to hospital for my first bleed.
Intro 10:35
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind, like, how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, doctors will explain things.
Intro 10:54
But obviously, you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called a seven questions to ask your doctor about your stroke.
Intro 11:19
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery, head to the website. Now, recoveryafterstroke.com and download the guide. It’s free.
Bill Gasiamis 11:38
Well, nothing my first paid for my second bleed, then I would have been completely dissatisfied with the level of care that I was receiving. And 37 When my life’s on the line, I’m like, Well, I don’t think I’m going to cop this, you guys aren’t going to be that way while I’m around. And I’m going to do something about it.
Bill Gasiamis 11:57
And then I took responsibility for those things. Luckily, I was able to I was cognitively well enough just to be able to take responsibility for that stuff and to handle some of that stuff off to my wife. And, and we got through it. What bothers me about women who have taken them the the contraceptive pill, and they’ve been on my podcast, is that one of them, ask them? Did the doctors say it was the pill that did it. They do the hall while it may have been the pill that did it.
Jenn Williams 12:33
Yeah, they won’t cop to that.
Bill Gasiamis 12:36
Yeah, no one commits to it. It doesn’t say it on the box for no reason it says it on the box for a reason. And when you’re perfectly healthy, you don’t have any history for any of those conditions that cause blood clotting disorders. And you’re young, and you have a stroke, and you’re on that there should be a logical conclusion.
Bill Gasiamis 13:02
And this shouldn’t be this. We’re just going to wipe our hands from that, but I think that is the pharmaceutical industry, right? That is that whole, just give them this stuff. And you know, 99.9% out of the time, it won’t cause any harm, and it won’t cause any problems. And if it does, we’ll just deny it anyway, it will say it could have been something else.
Jenn Williams 13:25
Right? So they classify my stroke as cryptogenic. Because they’re not gonna say that it was officially the contraceptive. So they say that there’s no known cause. Well, if I don’t have any of the other risk factors, I don’t smoke, I take very good care of my body.
Jenn Williams 13:44
All of my numbers are good. Then what does that leave? But it’s like they’re too scared to say that. Which is really unfortunate because it leaves so much unanswered for people that are like myself, like you that are looking for answers.
Bill Gasiamis 14:02
And you’re looking to maintain your health as much as possible. Now that you’ve had a stroke, you want to make sure you don’t have another one. Did anyone say you should stop taking the contraceptive pill?
Jenn Williams 14:16
Oh, yeah, that was the first thing that the doctor said to me. Well, thank goodness.
Bill Gasiamis 14:20
Oh my gosh. So it probably wasn’t the contraceptive pill but stop taking it anyway.
Jenn Williams 14:25
Oh, yeah. Then the neurologist in the ER came to me and said you will never take contraceptives again. That was in the ER before I was even admitted to the ICU. Yeah.
Bill Gasiamis 14:40
I many years ago was coaching a lady who wasn’t on the contraceptive pill but she was on other medications. stuff again that she started in her teenage years for some conditions right for a particular condition.
Bill Gasiamis 14:54
And by the time I spoke to her, she might have been 2530 years into taking that particular medication. And the very first question I asked her was, is it still necessary for you to take that medical medication? Has that issue resolved? And she looked at me dumbfounded. She goes, I don’t know. I’ve never asked anybody. I just go and get the refill every, every however often, and I just take it again.
Jenn Williams 15:23
I just keep taking the medication.
Bill Gasiamis 15:26
And I was like, okay, cool. So the next time we spoke, she had spoken to her general practitioner, and they had begun the process to investigate her condition and her situation. And to determine whether or not it was a good opportunity to start removing herself from this particular medication stopped taking this medication.
Bill Gasiamis 15:50
And no one had followed up with her in all those years, and no one had said, How’s this going? How’s that going? In Australia, you have to go back and get a script, from your doctor, every so often, they’ll give you certain refills, and the pharmacist where you pick up the medication all day, every day, your entire life knows you by name by now, nobody kind of goes, what are you still don’t take in this, how are you going? Are you better? Have you recovered?
Jenn Williams – Self-advocacy For Medical Care
Jenn Williams 16:20
And I think I think that too, comes down to the piece of self advocacy, advocating understanding your body but also advocating for your body. And I’ve been very clear with my doctors, I don’t want to take on unnecessary things. How long have I been on this? Can I get off of this? And they know that that’s my stance. So I think being very clear and direct in that way can be really helpful. But like you said, a lot of people just don’t even think about it. They just, I gotta go get my meds and they take their meds and they go about their day, not thinking that they’re putting chemicals in their body and causing potential damage.
Bill Gasiamis 16:58
And disclaimer, neither Jen or I are saying, stop taking your medication. No, one’s saying that.
Jenn Williams 17:06
Good call Correct. No, one’s saying that or saying talk to your doctor.
Bill Gasiamis 17:11
Correct. And we are also saying that some medications are very necessary, and you have to keep taking them. And you must not be slug are taking them because they’re probably keeping your well and healthy. So there’s both sides of the spectrum. And we’re encouraging people just to know, just, yeah, where they’re at.
Jenn Williams 17:38
Just to ask, it’s and so I’m from Maine in the United States, and we’re the most northern state on the East Coast. And I do self advocacy training with support groups with a colleague from New Hampshire. And one of the things we tell people is, it’s your body, you have the right to ask questions about your body and about your care. That’s so important. It’s okay to ask a question. And so many people are too scared. It is okay to ask a question about your body. It’s yours.
Bill Gasiamis 18:13
I agree. I think maybe do you think maybe the recent pandemic challenges with medications might have thrown a bit of a spanner in the works, the way that they were suggested that they were taken, might have thrown a spanner in the works to comply.
Jenn Williams 18:34
In a way, I do think that there are some people that are and this is not a dig at anybody, but that there are more apt to comply than others. And for me, once again, I needed to do what was right for my body. And for me, I felt like we didn’t know enough yet. And I was not comfortable taking any vaccinations or anything like that. And I had a lot of people that were really mad at me, including my mother for making that decision for myself. And now looking back, I made the right decision. I don’t knock anybody for doing that. It’s just your own personal decision.
Bill Gasiamis 19:14
Same and on that point of the thing that you said I think which is the best you didn’t know enough. And you not only did you not know enough about that. But this is the point that’s the exact point. Most people don’t know enough about taking the contraceptive pill. Most people don’t know enough taking x y z and that’s the thing it’s that we don’t know enough, we haven’t asked enough, we haven’t learned enough, we don’t understand the ramifications, the complications, we don’t understand that.
Bill Gasiamis 19:43
I think we should understand it. Especially if the ramifications of not taking something as well and negative so blood pressure lowering medication, blood sugar lowering medication like if we are not doing other things As to support our blood pressure and our blood sugar. And we need medication.
Bill Gasiamis 20:05
We need to know the ramifications of the other side of the spectrum. What happens if you don’t like high blood pressure medication? stops people from having hemorrhagic strokes? And ischemic strokes? So we need to know more. And thank you for going on that tangent. That was a good one.
Jenn Williams 20:26
I think it comes with brain injury honestly.
Bill Gasiamis 20:30
It’s very relevant. Why don’t want to do that. I want to go back to before we went on that tangent, and I want to ask you about how did you end up leaving hospital with your family with you in the care of your family? And what kind of a decision was that that they made that they were going to take the responsibility for helping you get through this on? Like, how does that happen?
Jenn Williams 20:56
I mean, partly, I think it’s just that I’m just wildly independent, and so is my mother. And my mother is not going to accept me being coddled, I guess. It’s just not how I was raised. I was raised to be, you know, very independent and forthright. So I, they came in and they said, we really want you to go to inpatient rehab, it would be three to six weeks, you would have your daily PT, OT, those kinds of things.
Jenn Williams 21:31
And my mother was, no, because she’s seen family members go to inpatient rehab. And we said, okay, so what would outpatient look like, you’d be going to the outpatient facility three days a week, you would have your PT or OT, I did have a speech evaluation, which they just said, You’ll get better. And I didn’t have to go for speech therapy. But they really they kind of explained that the outpatient therapy was actually more intensive than inpatient therapy, because they have more tools in their outpatient centers than they do in inpatient.
Jenn Williams 22:11
So that was the other deciding factor was that when I first went to the neurologist, after my stroke, I didn’t understand. And I said, how long is this going to take? Like three months, I don’t have time for this. And now looking back, that outpatient decision was the right decision, because that was my attitude, going into it from the beginning, is I’m going to get better. I’m going to walk again and write again, and all of those other things, it’s not negotiable.
Jenn Williams 22:41
So how do I do that? That’s the most efficient way possible, which was outpatient. And I had an amazing experience with my outpatient rehab. And during the days, when I had appointments, my mother would come and take me. And then on the days where I didn’t have appointments, and my husband was at work, I had friends and family that would come and spend the day with me, because I was a fall risk.
Jenn Williams 23:04
So make sure that I, you know, could go to the bathroom. And that kind of thing. I wasn’t allowed to cook, because I couldn’t tell temperature in my hand. And of course, there’s all cognitive pieces to that as well. So I had friends and family that would come over and make me lunch and that kind of thing. And then in the evenings on the weekends, my husband was the caretaker.
Bill Gasiamis 23:28
That’s very cool. I get it now. That’s a great move. I thought that they took on your care. And I had no tools or sir or capabilities or skills to do any of that stuff. And I was fascinated to hear that story. But I think what you did was awesome, because I was in inpatient rehab for about a month. And I was I was like you I was maybe it wasn’t how long is this going to take but it was I’m going to put as much time and effort in as I can while I’m here to get a result. So I’d go home sooner.
Bill Gasiamis 24:05
And instead of being in for the two months that they had booked me in for was in for a month. And then I went to outpatient rehab and I had a similar kind of support structure where family would take me to and from. And my level of cooking was just low level of, you know, prepping a sandwich or something simple that didn’t require knives and standing for too long and all that type of thing.
Bill Gasiamis 24:36
And then family was bringing over food and then my wife when she wasn’t at work she was helping out and doing her her bit. So it was very similar. And I remember going to outpatient rehab, but I felt like it was a bit of a waste of time. I felt like I had done the majority of the recovery I got great results at in inpatient rehab. And then outpatient rehab, I ended up getting to the point where I said to the guys, I think I think I’m done with you guys, you’ve done a great job, and I’m gonna take the responsibility to improve my walking even more.
Bill Gasiamis 25:20
On my own, I’m going to do that at home, and I’m going to get better at home. But thanks for everything that you did. And one of the reasons I did that was because I was bothered. I had three appointments a week. And after about, say, nine months of best six months of outpatient rehab, that meant that I had to spend, and always around the middle of the day or something like that I had to spend half of the day, going to the appointment, doing the therapy, and then leaving the appointment and coming home.
Jenn Williams 25:59
And recovering from those appointments takes a lot out of you as well.
Bill Gasiamis 26:04
So it’s about three or four hours of the day that are gone. So I couldn’t be productive in other things. So it was kind of weighing up the all the pros and cons and then going, okay, the pros are that I’m really well, well enough to go home. And then I can definitely do more recovery on my own and save three or four hours, three days a week.
Jenn Williams 26:34
And I asked my physical therapist, I said, you know, how like, would you classify this injury as, because I call them a brain injury? would you classify this is like, mild, it doesn’t feel mild, because I’m learning to walk again, and learning to write again. And she said, I would call it moderate. And I said, I’m just trying to figure out if my recovery is because I’m younger, and I have more gray matter and I more easily leave covering, or if it’s because of like the type of stroke. And she said, Honestly, it’s because you show up.
Jenn Williams 27:12
And I said, What do you mean I show up? Of course, I show up. And she said the amount of people that don’t show up to their appointments is shocking. And when you miss an appointment, you miss a step in your recovery, just like you show up, you do the exercises, even if they scare you and make you uncomfortable, you still try them. And you you try and you show up and you do the work. And that’s what has made a difference in your recovery.
Bill Gasiamis 27:38
I would tend to agree with that. And even if it’s hard, you do it, even if it’s hard, and you do it even if you’re fatigued later. And even if you have to recover for half a day or a day.
Jenn Williams 27:51
And I cried in PT all the time. It’s just part of the process.
Bill Gasiamis 27:57
Yeah, you have to kind of push yourself, you’ve got to get beyond your limits. You got to find where your limits are. You’ve got to do everything. And it’s got to be you’ve got to be brave to just go places you’ve never been before emotionally, mentally, physically. Because you do get results, you get something back. Now, it might not be the same thing, everyone might not get the same thing back.
Bill Gasiamis 28:22
But you always get rewarded for putting in more effort when your effort is going towards trying to make you walk better use your hand better, balanced better, you’ll always get a reward by putting in more effort, especially when it’s supervised and you’re safe. And you’re in a good place. Why I like to think that people who are listening to this podcast or other podcasts that are related to health and wellness and recovery.
Bill Gasiamis 28:53
And overcoming challenges, and all that kind of stuff are always going to be better off than the people that are not looking for podcasts, to listen to, to learn from books, who are not asking to be on a podcast. It’s like, I don’t know what your condition is. I don’t know how bad you are. But if you’re on my podcast, or another person’s podcast, who talks about recovery and overcoming stuff, and how you’re beating the odds and all that sort of thing, you are likely to get a good outcome, you are likely to have an amazing life in 10 years from now.
Bill Gasiamis 29:27
And the people who aren’t I’m not saying if you’re listening, that’s not enough. No, that is enough. All I’m saying the people who aren’t considering any of that stuff, and are just feeling sorry for themselves. They are going backwards, they’re not going to achieve much.
Jenn Williams 29:46
And that’s another thing that I share in, you know, the trainings that I do is that part of my because people ask me, you know, how did you have such a great recovery? And one of the things I say is that I refuse to be a victim I’m not going to let this one medical trauma, destroy the rest of my life. I’m not going to sit back and say what was me and just be depressed for however many years I have left, too young for that that’s not acceptable to me. So I’m not going to be a victim. I’m not going to sit there and let life pass me by. And I think that that mindset makes a huge difference in recovery.
Bill Gasiamis 30:28
This this is saying that I’m gonna ruin right. And I’m gonna not say it right, for sure. It goes something like you fail 100% of the times you don’t try. So I’ve taken that to heart. It’s like, every time you’re afraid of something failing, because you tried it, and you weren’t good enough at it at the beginning. That’s not a failure. That’s a win every time you thought, I’m not going to do that in case I fail.
Jenn Williams 31:02
And you’re learning, you learn every time you fail at something.
Bill Gasiamis 31:08
So tell me a little bit about your background. What did you do for work? What were you doing to occupy your time before you had the stroke?
Jenn Williams 31:19
I was in banking for about 10 years. So I worked in commercial lending, I worked in the branch doing teller work, and I became a licensed insurance agent. A couple of months before my stroke, yeah. See, we I got my job in October of 2015. My husband and I bought a new house in January of 2016. I became a licensed insurance agent in May of 2016. And I had my stroke in August.
Jenn Williams 32:02
So I continued to try and go back to work. That was not not conducive. But I was I’m also a 31 consultant. So it’s direct sales. And there’s like bags and totes, and that kind of thing. So and I was a leader in that company. So I was working 40 or 50 hours a week as an insurance agent, about 15 or 20 hours a week at that job. And I was going to CrossFit three days a week.
Jenn Williams 32:31
I was actually continuing to try and go to CrossFit when my hand was tingling. And I was adjusting movements over that 10 days, because I couldn’t grasp correctly. But I mean, not that I don’t now but I had a very full life. It’s just a very different full life. Now I, you know, spent a lot of time with my family and made sure that I had a lot of fun things scheduled and to concerts and all that other stuff. I tried going to a concert, I think two or three years after my stroke, that was not a good idea.
Jenn Williams 33:08
I’m better now. But the sensory overload that Oh, my goodness. And that has been one of my biggest issues is overstimulation and sensory overload. Which I’m sure as you can understand, and I’m sure other people have said this on your podcast is that when people can’t see it, they don’t know it’s there. They don’t understand.
Jenn Williams 33:28
So they just say, Oh, you look great. You’re fine. But constitutively No. So I tried going to a concert, and it was not a good idea. I’m almost eight years post injury and I can do those now. But I’ve had to definitely adapt my life, it’s not what it used to be. It’s different. Does that answer your question?
Bill Gasiamis 33:52
It does. I wanted to get a sense of like, how you were and how you hang out now what you do now. I was the same. You know, work was no problem. I was 37 It was everything was happening fine. Tried to go back to the football which was the thing and people would invite me to go to the football I said I think I want to avoid that I don’t want to go there’s too much noise and yelling and cheering and bright lights for a night game and all that kind of stuff. And it was really difficult to be there.
Bill Gasiamis 34:24
Tried to go to a couple of venues where family would have a party or something like that or get together and then that would be an early night a lot of the times you’d be I think I’ve had enough at around 930 or 10 o’clock and it’s this go home and then I did go to an AC DC concert with my sons and here in Melbourne and I went with ear protection so that it can dial the right sound a little bit and I could still be there because of my Favorite band.
Bill Gasiamis 34:57
And then I still will avoid loud rooms, if I can noises, TVs and all that kind of stuff. Everything’s always on, you know, as low as possible. And even these lights that I have next to me and, and in front of me on the podcast where I where I record, even they bugged me. They’re on for an hour. And they bugged me. But like, yeah, you need, you need some lighting, so I can put up with it for now. So it’s okay. So what deficits do you have now? How does the body feel now?
Post Thalamic Stroke Recovery And DeficitsJenn Williams 35:36
I’m mean, overall, I’ve had a really good recovery, I still have my struggles. But I’m really grateful for the recovery I’ve had, I still have some balance issues. I started going to yoga and bar. I don’t know if you know what Barr is. It’s like a combination of like ballet, yoga and strength training. So it really focuses on those little muscles, which I realized is what I needed to focus on to help my balance. So that’s been helping very slowly, but it’s a very, very slow process. So balance is still an issue, and insomnia.
Jenn Williams 36:18
I have terrible insomnia. It’s really bad. I’ve been working with a naturopath to try and get that fixed because I was not getting answers in the standard medical world. And then cognitive, really, that overstimulation? I call it delayed memory, like I will remember things a couple of days later, which I had a neuro psych evaluation. And they said that that’s actually stroke onset ADHD, I didn’t know that was a thing. So it can’t be treated with medication because it’s due to brain damage. So I just kind of have to navigate as best that I can with all of that.
Bill Gasiamis 37:04
And stroke onset ADHD makes you remember things two days down the track.
Jenn Williams 37:11
So it’s because if I’m not in a focused environment, like right now, if you and I are talking, and you know, my husband comes in and says, you know, hey, can you do this when you’re done? I won’t remember that. If he says, Hey, I need your attention. And they says, Can you do this? Yes, I can. But it’s because of that distraction, that ADHD that I had my testing done, and they said, my storage and recall is fine. It’s just that there’s this delay in me finding the information that I have stored in my brain.
Jenn Williams 37:44
And it’s because of distraction. So that’s been an adjustment, I’m trying to use post it notes and alarms on my phone, and calendars. And I have the calendar on my phone, and I have a paper calendar. And then I have a family calendar, and I have all of those things to make sure that things don’t fall through the cracks, cracks, they still do sometimes. But that’s been an adjustment, as well.
Jenn Williams 38:12
And then that overstimulation piece like I mentioned, the hardest thing for me has been the grocery store and driving. Those are very complex tasks for the brain, and you don’t realize it until your brain is misfiring essentially. So I’ve worked really hard to get to the point where I can do those things. I don’t know if you guys have this in Australia, but there’s a company in the United States that does music therapy for cognitive health.
Jenn Williams 38:43
And I use them which made a huge difference. And I went from not being able to drive for more than maybe 15 minutes to driving an hour, hour and a half. And like going having lunch with my friend and driving back in an hour. So that made a really significant difference in my recovery. But when I’m tired that all flares back up.
Bill Gasiamis 39:06
And then the brakes get put on I know that I know that when I’m tired thing the wall comes up from out of nowhere.
Jenn Williams 39:15
That’s a great description a great analogy “The Wall” it’s exactly what it is.
Bill Gasiamis 39:20
That’s what it is. And it’s like I’m here again. All right. Okay, I’ll stop I’ll sit down and won’t do anything now for the next however many hours and for me the wall’s getting shorter and shorter. But it still pops up it still kind of says you’ve done too much. You haven’t rested enough you didn’t have a good night’s sleep. Time to sit down and do nothing. And that’s it and everything just sort of shuts down like you say like in the movies. You know when a button is switched off on the robot and everything just goes.
Jenn Williams 39:56
Powering down.
Bill Gasiamis 40:02
That’s exactly it. So, man, I was gonna ask you a question about something you just said about your Oh, yeah. Music therapy. So what’s that based around? Is it based a certain frequency range that you listen to? How does that work because I have used, and we do have people who offer music therapy.
Bill Gasiamis 40:29
I’ve never gone to a music therapy session, but I have listened to certain meditations that are at certain frequencies, to get certain waves, beta waves, theta waves, all that kind of stuff going, depending on what you want to achieve. So tell me about what you did.
Jenn Williams 40:47
So this is what I experienced is different than that. But I do use those meditations, like you mentioned, especially delta waves for sleep, so I use those. But this music therapy was to help me with my divided attention, the stroke onset ADHD. And basically, what the therapist would do is she would have a guitar.
Jenn Williams 41:08
And then she would have a drum playing on her computer. And she would say, random letters, and I had to raise my hand whenever I heard an H, but only if the drums were playing. So I had to listen to her guitar, listen to the letter, listen to the drums, and then make a decision and acknowledge it physically with my hand.
Jenn Williams 41:32
Our pool is very complex, but their intake, you know, they do an intake and you know, our exam, just like any other provider, my intake, I was at, like 67% accuracy. And when I left, I was over 90%. So there’s proof in those that that made a difference, for me a significant difference. So there was a lot of different things like that, or she would tell me, she would play notes.
Jenn Williams 42:02
And I had to tell her, basically, whether they were the notes were going up or down from the previous one. So I have to listen and kind of process the two different tones. Was that first tone lower? Or is the second tone lower? So that required some additional divided attention as well. So it was really it was really interesting.
Bill Gasiamis 42:27
Did you also learn you weren’t tone deaf?
Jenn Williams 42:30
Yeah, I used to play music and in school and like high school, so I know I’m not tone deaf. Not completely anyways.
Bill Gasiamis 42:44
Good. I’m glad you got that.
Jenn Williams 42:46
I did I like it.
Bill Gasiamis 42:50
That’s cool. He’s mentioned earlier a little bit about advocacy work that you do about that? What do you do? Who do you hang out with? What? What spaces do you do that in?
Jenn Williams – The Middle People ProjectJenn Williams 43:02
So I’ve done some speaking at some support groups, I’ve done some speaking to college classes for future like speech language pathologists, to kind of talk about brain injury and how they can actually make a difference in brain injury or recovery. I can I plug I don’t want to like plug a business or anything.
Jenn Williams 43:30
But I want to tell you about this project. So I told you I was teaching self advocacy with a colleague from New Hampshire. So I also am on the advisory board for the Brain Injury Association of America, Maine chapter. So they look for survivor’s input. And I also did some administrative support for our legislative council that deals with brain injury law.
Jenn Williams 43:58
And in all of those meetings, I have said, what about the people in the middle? Because they talk a lot about these, you know, government waivers and Medicare and you know, how many spots we have and who’s getting services and all this other stuff? Well, those are very small numbers.
Jenn Williams 44:18
So what about the people in the middle? What about the people like me, that didn’t go to inpatient rehab, I went home, I did outpatient for a year. And I’ve been trying to figure it out on my own for eight years now. I stuffed the primary group that I see at support groups these people that aren’t eligible for certain services, either because they’re “not disabled enough”, which I’ve been told, or they don’t meet qualifications financially.
Jenn Williams 44:50
So they’re just left to not much for resources. So I shared this idea over and over again, wasn’t really welfare saved. And then I shared it with my colleague from New Hampshire, John, and he shared it with his colleague, David. And David took it and ran with it. He was like, this is an amazing idea. There’s millions of middle people if you actually break down the numbers.
Jenn Williams 45:15
So the three of us have started The Middle People Project. So we’re trying to create a hub of resources for people that feel like they’re in the middle. They don’t qualify for services, but they feel like they still need help. And they’re not as fully recovered as they’d like to be. I don’t think anyone ever fully recovers. So I don’t like to use that term.
Jenn Williams 45:36
So we’re trying to offer self management strategies, and eventually do you know, a blog and helpful resources, that kind of thing, because there’s so many people that just need a little extra support, and they don’t know where to go. So that’s another kind of passion project that I’ve been working on in the brain injury world, I have all sorts of ideas. So we’ll see where, you know, next year, I could be on a totally different project. I don’t know.
Bill Gasiamis 46:07
Yeah, well, if you’re ADHD brain has anything to do with it, you definitely will be.
Jenn Williams 46:12
Oh, it does. That’s why I have notebooks everywhere.
Bill Gasiamis 46:19
Yeah, that’s really cool. So I was one of those people stuck in the middle, I received some health care, and some rehabilitation, got a really good result was happy, didn’t feel like the job was done, and then wanted to do more. And then continuing to do more, I consider myself fully recovered, but not from the damage that was done, the damage is there, and my deficits are there. But if I call myself fully recovered, it’s probably from the emotional side of that. And the mental side of it. Although I did my book launch about a week and a half ago.
Jenn Williams 47:00
Congratulations.
Bill Gasiamis 47:02
Thank you, thank you. I was in tears. So often in my presentation in my speech, and I had to start making jokes about it. And during the presentation, it was so there was so much of it. And I didn’t realize I was going to have such an outpouring of emotions in that way that it was going to be so evident. And I had to catch myself a few times. But the good thing about being emotional in front of people is, as soon as you cry, you’ve got them hooked. So it didn’t matter, every time I thought I was losing them, I just chucked a few tears out there and just bring them back again.
Jenn Williams 47:02
Yeah. So I applied to speak, to share my survivor story at the main brain injury conference this fall. And because of all my work, I know quite a few people at the Brain Injury Association, and one is my friend Sarah. And I would say it was like two weeks after I applied. I had a really long day at my job that I have now, which is working at a property management company. And I overdid it. And I realized that I was at the office and I couldn’t drive home.
Jenn Williams 48:20
So I ended up laying on the floor for like a half hour until I felt safe to drive home. And I’m on my way home, just sobbing. And I call her and I’m like, who am I need to talk about recovery and mindset, if I am sobbing in my car, eight years later, and I overdid it. And she’s like, that’s why that’s literally why because that’s relatable because survivors deal with that every day. And I just had this moment of like, I don’t have this under control at all. I thought I did, but I don’t.
Bill Gasiamis 49:03
Exactly. I’m 12 years out and here I am speaking in front of a whole bunch of people who came to see me talk about a book, you know, and I think that just goes to show that that’s, you know, that’s just human that’s just being human that’s that’s all that is, not anything else. And it’s good to be able to share your express your emotions, to have the understanding as well, that I need to lie down, I can’t drive and rest.
Bill Gasiamis 49:31
I often would find myself jiving many years after the brain surgery and kind of get the whole nods happening you know, oh my gosh, don’t think I’m I’m fading. All over Find a quiet spot under a tree had just sleep. Sit down, say for 2030 minutes as long as I needed. And then I would start the car and go again.
Bill Gasiamis 49:59
And it was necessary, without it, I definitely would not have made it home safely. And it was simply because of that overwhelm of perhaps the distance I traveled, the amount of time I was concentrating cars going by whether it was raining, or whether it was sunny, everything impacted, the way that I would experience that drive and everyday was different.
Jenn Williams 50:27
Driving is a very complex thing for the brain, there’s a lot of input that’s happening, you’re looking at the road in front of you, you’re looking at the road to the left or the right, depending on what country you’re in, you’re looking at the other lanes watching the traffic, you’re looking on the side of the road for any potential hazards, you’re looking in your rear view and your side mirrors.
Jenn Williams 50:48
And for me, the biggest issue that I was dealing with was the shadows from the trees, at certain times of day, they would create like a strobe effect. So it felt like a strobe light while I was trying to focus on all of those things. And similarly, like you said, if it’s raining, raining with the windshield wipers, it would feel like a strobe going in front of my eyes. So it just you don’t realize how complex it is until your brain is trying to basically learn it all over again.
Bill Gasiamis 51:20
Yeah, that’s that’s a legitimate reason to feel like you need to lie down and restaurant you have to it’s yes, it’s necessary. 100%. And I’m like you like it does make me doubt my qualification of being a podcaster promoting all this stuff. And, you know, being an advocate and all that something kind of does make me question my qualification.
Pain Management And Personal GrowthBill Gasiamis 51:47
And makes me do silly things like, it makes me have like, imposter syndrome every once in a while still. And all that type of stuff. It’s crazy. I still get that even though I’ve done more than 300 podcast episodes, I’ve written a book, I still feel like a bit of an impostor, because I kept remembering the person that I was before stroke. And I was, and I wasn’t not this kind of guy. Like I didn’t do anything public. You know, I wasn’t out there. And I still feel like my identity hasn’t caught up with all the stuff that I’m making it do, that it hasn’t signed up for.
Jenn Williams 52:33
Yep, I absolutely understand that.
Bill Gasiamis 52:37
And I don’t even know why I’m doing it all sometimes, why the hell am I doing? Why am I doing my 300 and 10th podcast episode that’s like.
Jenn Williams 52:48
I can tell you why. Okay, number one, it’s fulfilling to help other people, just in general. Number two, there is such a lack of voices and information around brain injury. So you’re making an impact by spreading information. And number three, it’s healing to connect with other people that have gone through what you’ve been through,
Bill Gasiamis 53:11
Tick, tick, tick. That’s exactly why.
Jenn Williams 53:18
Because I do the same thing I’m always looking for, like, how can I make an impact? How can I, you know, help this person? What resource do they need? That’s my same drivers as well.
Bill Gasiamis 53:31
And sometimes I feel incapable of actually helping and making an impact. And because a friend of mines daughter had a hemorrhagic stroke last year, and she was 17, at the time, I was in ICU with him. And you know, we struggled together. They’ve come a long way, and she’s a lot better, but she’s got pain now in her left foot.
Bill Gasiamis 53:58
So when things started to settle down, the numbness turned to pain and the pain kicked in. And she’s struggling.
Jenn Williams 54:09
How long ago was it?
Bill Gasiamis 54:13
It was in the last 12 months. And now she’s struggling dramatic pain, because of where the stroke happened was the area of her brain where pain receptors do that work, right? That’s as much as I know about it.
Jenn Williams 54:29
Was it the thalamus?
Bill Gasiamis 54:32
It was in the middle of the brain near the very center of the brain. Right side, when you see the brain scans, you see the two sides of the walnut and then in the middle, there’s kind of like a bit of a gap. The bleed was from the right side, she had an AVM that damaged the right side, but it bled into that gap between the two pieces of the walnut.
Bill Gasiamis 55:01
Anyhow, they drained it and she’s got an amazing result, right. But she’s got this pain now. And that’s the thing. It’s like for me, I realized the works not done. And I don’t know how I don’t know how useful it is this podcast to people who haven’t had who have pain who feel debilitating pain.
Bill Gasiamis 55:23
And I can’t relate to it because I didn’t feel that I feel a little bit of pain, but not ridiculous. She’s not able to sleep because of it, and it’s causing some drama, so that I feel I still feel like I’m not doing enough, like, my work is inadequate.
Jenn Williams 55:40
Because every injury is different. I used to hate that phrase, that every brain injury is different. But I’ve learned to accept it and actually appreciate it. Because that means that you’re not pigeon holed into one recovery timeline, or whatever it may be. So even though you might not relate to her on the pain level, the general concept, you know, is all very similar.
Bill Gasiamis 56:16
And I’ve seen that other side of what stroke does to families, because she’s got great parents, and they’re doing a good job, and it’s all good. But I can see the strain on the family, and the mom and dad and what they are going through. And then I just think about that. So it’s on my mind a lot more.
Bill Gasiamis 56:39
And I’m getting a little bit overwhelmed by it, not in the it’s not going to shut me down or stop me from doing what I’m doing or anything. But you know what, my heart goes out to them. And that’s what it is. And I just don’t want them to be in that situation. And I hope that they have a result a resolution and they’re going after every possible resolution, you know.
Bill Gasiamis 57:01
So, yeah, it’s just man and this guy, this guy I grew up with. I’ve known him since I was about four years old. And he is a radiographer, I wrote about him a little bit in the, in the acknowledgments in the back of the book. And he helped me out with all the brain scans that I did so he and his team would be taking my brain scans at the hospital that I was at, at the Royal Melbourne Hospital.
Bill Gasiamis 57:31
And he wasn’t meant to, but he would come after the scan and go, it’s looking alright, or because I was I had about eight or nine MRIs in the time that they were monitoring the blood vessel that burst the AVM and he would come and go, it doesn’t look like it’s changed, things have settled down a little bit, etc.
Bill Gasiamis 57:52
And stopped me from waiting about one month to get the news with my doctor. So that was really cool. And then to be in the damn hospital ICU with his daughter on life support because of this same issue that I had 11 years later, it’s just crazy. I just can’t comprehend it. But it was great to be that guy that was able to walk in the ICU and show them what is possible. Without saying anything. All I had to do was walk in there.
Jenn Williams 58:38
Can I ask you a question? Have you seen any gains or changes as you’ve gotten farther away from your injury?
Bill Gasiamis 58:52
Yep. Cognitively, things are improving still. And physically things are stable to slightly declining. But the decline is not something that I can address. So what I noticed is my balance gets worse sometimes. And my pain and the tightness and the spasticity in my left side gets a little bit worse. Now again, nobody would know.
Bill Gasiamis 59:31
If I said that to somebody that knew what spasticity looked like. For some stroke survivors. That would go you don’t have spasticity. But the feeling that I have has sometimes, sometimes gets worse. And recently I kind of smiled when I said recently I fell off a ladder. And the reason When I fell off the ladder was because my left hand gave away it just let go of the ladder. And that does happen from time to time. And usually it lets go of a bottle that I’m holding or my telephone.
Jenn Williams 1:00:12
I had that happened with my purse last week. I was really tired, I was holding my purse and my hand just let go.
Bill Gasiamis 1:00:22
Yep. I’ve lost the phone because of that. All sorts of things. But then this time, I was climbing a ladder, I was only two rungs up, I was going up to the third rung. And my left hand just let go.
Jenn Williams 1:00:39
Thank goodness, you weren’t further up?
Bill Gasiamis 1:00:41
Well, I still fell backwards. And I fell onto a middle bar, a scaffold bar. Because my full time business is we have a property maintenance company. And in order to do the repairs on this particular home, that we’re working on, I got a scaffold so we could be safe.
Jenn Williams 1:01:06
The irony.
Bill Gasiamis 1:01:07
Yeah. So I’ve fallen off the ladder backwards onto one of the horizontal scaffold bars that are holding the construction of the, you know, all the poles together, it broke my fall, I landed on my ribs. And then and then I fell another three feet, or a meter to the deck below and hit my head. So it was quite a shock to find myself down there. And then I couldn’t sleep properly for about a week. And then I started to sleep better after that.
Bill Gasiamis 1:01:43
And it’s been around three weeks, and only for the first time last night, I was able to lay on my side, haven’t been able to do that for three weeks. Because of the pain, I got it checked out. There was a lot of bruising, there was no broken bones or anything. But that is not an escalation of my condition. It’s kind of what my condition is doing.
Bill Gasiamis 1:02:07
And I think what it’s doing is it needs more TLC, it needs more therapy and more rehabilitation, I’ve been going to the gym trying to strengthen my left side. And I still, you know, eat well, and all those things, try and get as much sleep as I can. But I think my left side is becoming more needy, and I’m not putting enough effort in. And it feels a little bit number.
Bill Gasiamis 1:02:41
And maybe, and in winter, it always gets worse. It’s getting into the winter months now. We’re first day of winter today here for us. June the first and and I think in winter, my sensation decreases on my left side, it gets more colder and more numb. And I remember now that you asked me thanks for asking this because it’s just reminded me everything my mum,
Bill Gasiamis 1:03:06
I was at my mom’s the other day. And I was in her way. And she was just trying to not interrupt my conversation and kind of squeezed through him. But I wasn’t paying attention I didn’t notice. So she went to pinch me on my bum. And she said, Why aren’t you moving out of the way? And why aren’t you responding? I said to what? Because I’m pinching you on the bum. I can’t feel it. She says really? She thought I was joking, and that I was just putting up with it. I couldn’t feel it at all. I had no idea she was doing it. So yeah, those types of things are happening now.
Jenn Williams 1:03:48
Have you heard of something called post stroke? recrudescence? No, do tell this is my favorite topic. You’re gonna love it. Um, so there’s been there was a study done at Massachusetts General in I believe it was 2016 or 2017. And then the American National Institutes of Health just did a study on it, I believe last year.
Jenn Williams 1:04:14
So the basic explanation how this was explained to me is that when you have a brain injury, and you have neurons that die, the neurons around the dead ones, eventually pick up the job of the dead your neurons as their second job. Well, if your body feels like there’s a crisis, which in the body or crisis can be that you’re tired that you’re stressed. It could be you have low blood sugar, the brain can say, oh crisis, we need to focus on our first job and it stops doing the second job.
Jenn Williams 1:04:53
So I have symptoms that flare up. When I’m really stressed when I haven’t slept At if my I didn’t really have blood pressure or blood sugar issues, but you know, things like that that could be considered a crisis in the body. And my brain goes, Nope, we’re not doing those things. So my hand stops working, I get tingling in my hand tingling in my face tingling in my foot, my balance goes, I get vertigo, all these other symptoms, and it can feel like another stroke or it can feel like just after my stroke.
Jenn Williams 1:05:28
So I’ve gone to the ER before, just to make sure I get checked to make sure that something else isn’t happening. And I’m usually fine. But I learned about that. And it made so much sense. And when I talked to other survivors about it, they go, oh, yeah, when I’m tired, all my symptoms crop up. When I’m really stressed about dealing with my doctors, all these symptoms pop back up. So it might not be necessarily decline. It could just be you’re not at homeostasis, for lack of a better word.
Bill Gasiamis 1:06:03
I love that explanation. I think that’s also is valid. What you just said is definitely valid. Classic example is if I have an argument with my wife. Happily married for 19 or 20 years. So I get more symptoms. Yes. So when that I’m in emotional, negative emotional state, I get more symptoms. And it encourages me not to be there for too long. And I’m getting better at not staying angry or mad for ever, and ever. So there’s that. I agree with that. That does happen. And I’ve said it a few times on the podcast. And when I eat the wrong food.
Bill Gasiamis 1:06:56
For me it’s like, say a pastor, or a sugary drink or something like that. Oh, my gosh, things just get so much worse. Brain fatigue, fog, tingling, balance, everything kind of just gets worse. So I agree with what you’re saying. I may have. And that’s a thing, because it’s happened recently a number of things have happened that have bugged me that have made me think but going to the mind goes to maybe it’s getting worse.
Bill Gasiamis 1:07:26
I don’t know that it is I’m not It’s not stopping me from doing anything. Although I am very cautious about letters. Always have been even though I fell from one, I always have been. Yep. And what it says to me is I just need to go and get more rehab, more therapy. That’s all it says. And I’ve been at massless chiropractors, this guy that I’ve been there the whole time. And they know me really well. So yeah, I don’t know. It’s always changing. And I’m always adjusting. And I’m always finding a way, a way to overcome it.
Jenn Williams 1:08:09
I do think that learning about the poststroke recrudescence helped me to be more self aware. Because when I have those symptoms flare up, I can take a step back and go okay, what does my body need right now? Did I get my electrolytes today? Did I take my medications? Maybe I forgot my medications. You know, maybe I forgot my aspirin or you know, whatever. How did I sleep last night? Am I stressed? Do I need to go move my body like so it gives me that pause to kind of have a little self evaluation to see where I’m at.
Thalamic Stroke Recovery: Insomnia Causes And SolutionsBill Gasiamis 1:08:50
Yep, I love it. I agree with that. That’s what I do every time I hit a wall, that wall is just the just have a wrist wall? Or is this the do something more than wrist wall? Like what is it? What do you have to respond to? So yeah, for me for work, because I’ve got a couple of guys working with me, I’ve got a business partner. I could just say, I’m not coming in. I need not to be there. And then I won’t be there. That’s been a good thing that I’ve been able to do. Of late. Tell me about your insomnia a little bit. So is it insomnia that had begun after all your medical issues? So what’s it like? How did it begin? Can you describe it? Explain it?
Jenn Williams 1:09:40
Well, you know, when you talk about insomnia with your doctor, they’ll ask you is it that you have trouble falling asleep or you have trouble staying asleep? For me, it’s both I have trouble falling asleep and staying asleep. And I actually didn’t realize I guess that it was insomnia at first but cuz I was so fatigued all the time, I just figured that I was just fatigued.
Jenn Williams 1:10:05
And I was talking to my counselor, and I can’t remember what did I say? I said, I said, I can’t get out of bed. I’m exhausted, and I’m so frustrated. I must be depressed, blah, blah, blah. And he said, Well, depressed people aren’t frustrated about it. So that’s probably not it. I said, Oh, okay. And he said, How have you been sleeping? And I went, Oh, not well, no.
Jenn Williams 1:10:35
And I push, I learned this probably a year or two after my injury. And I was trying to take care of it on my own and trying to take melatonin and trying to just adjust my life around my sleep schedule, and all these other things, and it wasn’t working. So I eventually got a in lab sleep study in Boston. And they said, Yeah, you have sleep latency, your cycle has shifted. So you just need to adjust your life around your new circadian rhythm.
Jenn Williams 1:11:14
Well, that’s semi practical, that’s not extremely practical. So I talked to my primary care and gave me some prescriptions and tried a bunch of different ones. And I eventually started seeing my naturopath for something else. And we got that addressed. And she said, Is there anything else you want me to help you with? I said, Well, if you could figure out my sleep, that’d be great.
Jenn Williams 1:11:43
And she said, Sure, we did some adrenal testing. And it turns out that I was making melatonin at the wrong times a day. And I had like, no cortisol. And then I found out, yeah, for those of you that don’t know, a lot of people think that cortisol is the stress hormone, but it’s actually the counterpart to melatonin. So it’s what wakes you up in the morning, it’s what keeps you going through the day.
Bill Gasiamis 1:12:05
So the too much cortisol can be stressful. Yes, cortisol is necessary, because it’s, it’s the wake up hormone, it’s the wake up part of the sleep cycle, the thing about it is is, once it kicks in, you want to see it drop off, after it’s got you awake, you want to say drop off, and then at the end of the day, when the sun starts coming down, you want to say cortisol, not be there. So that right, melatonin, can start doing its job of putting your body into the sleep cycle.
Jenn Williams 1:12:42
So I was I had very little to almost no cortisol in the morning, your cortisol levels supposed to be like at a 25. And I was at a three. And then the afternoon, you’re supposed to be between like a five and a 10. And I was point five. And I was also getting a melatonin spike in the afternoon. So my melatonin would jump really, really high at like three o’clock in the afternoon.
Jenn Williams 1:13:07
So my hormones were all messed up. Another side note, I realized through doing my own research through all of this, that more than half of brain injury survivors have some sort of adrenal dysfunction, which is where your cortisol and your melatonin is produced. So we did this adrenal test, found this out. And I’ve been using different medications to kind of retrain my adrenals.
Jenn Williams 1:13:37
I used to sleep until noon. And now I get up at like 830. And that has taken me a couple years to force yourself to retrain and like get up at seven o’clock in the morning and take my cortisol so that it produces at the right time. Ah, yeah, I don’t have to take it anymore. My body has figured out the cortisol part. So now I’m working on the melatonin part. But I feel so much better.
Jenn Williams 1:14:07
Even though my sleep is still very broken. I sleep for like three hours, I’m up for a little bit and I sleep for three hours. But I’m getting more restful sleep, and I have that natural waking cycle that’s supposed to happen. So it’s been a very long journey. On the insomnia piece.
Jenn Williams 1:14:26
I’ve done all of the healthy sleep habits, no technology, two hours before bed, listening to delta waves, meditating, reading, you know, dim lighting, essential oils, all these things to try and create this like almost romantic sleep situation. And it really was just my adrenals that needed to be retrained. So it’s been a very long process but it is worth it.
Bill Gasiamis 1:14:53
I love it because you have got a positive outcome and that just goes to show you it is something that you can address And it’s whether they’re looking Yes, deeply enough into it. When I typed in cortisol deficiency into Google, it says, cortisol deficiency occurs when the adrenal glands do not produce enough cortisol, this can happen for four main reasons when the pituitary gland is unable to produce the chemicals needed to tell the adrenal glands to switch on the cortisol production. So it’s, it’s a proper brain communication signaling issues. So what I why I read that was if anyone’s struggling with this sleep is to ask the big questions beyond kind of have a sleep medication.
Jenn Williams 1:15:48
I didn’t want to be on sleep medication. I didn’t want to be on that crazy stuff for years and years. I wanted to fix it. And you know, instead of just saying, I don’t know, I don’t sleep well. Give your doctor details. Explain, I’m not falling asleep while I’m waking up every 30 minutes, because that’s what I was experiencing, I was waking up every 30 minutes, and I would be up for an hour, hour and a half. And it was like naps, all day naps, because I was still out of balance. So asking the very detailed questions and being very open about what you’re experiencing can really make a difference.
Bill Gasiamis 1:16:28
Get your pituitary gland checked out, get your adrenal glands checked out, get your thyroid checked out. Don’t just leave it at an some medications sleep because I’m not sleeping properly.
Jenn Williams 1:16:44
And I had a thalamic stroke, which I have since learned, because I did not know this that the thalamus is the distribution center of the brain. So all of the information that comes in, goes through the thalamus and then gets sent out. So when you have damage to your Thalamus, it can affect everything. Because the thalamus communicates with everything. So it could depend not even your pituitary. It could be the lambic issue, it could be any number of things.
The Hardest Thing About Stroke For Jenn Williams
Bill Gasiamis 1:17:15
Yeah, yeah, it’s important to know where the stroke happened and what part of the brain is impacted. And what that part is, does for a living, you know, how it pays its rent. So that’s awesome. I’m glad you’re getting a result and you’re seeing an improvement. As we come to wrap it up, tell me a little bit about what the hardest thing about stroke for you was?
Jenn Williams 1:17:42
Ah, I would say grief, the grieving the loss of my old life. And my old identity, I realized that I had really begun to absorb a strong, deep work ethic as my identity. So when I couldn’t work, I didn’t know who I was. I was like, I don’t, I am not working 80 hours a week, and busy and all those other things like I don’t know myself. And I had to grieve the loss of that old life.
Jenn Williams 1:18:22
And I still have days where I cry, and unlike what happened in my old life. And you know, the the loss of some relationships, there are, you know, you were talking about the family thing earlier, my family’s wonderful, but I do have some family members that have never really asked me about my brain injury that have never shown any curiosity and how I’m doing which is eye opening.
Jenn Williams 1:18:56
And then I have friends that just couldn’t handle it, they just could not handle the fact that I was on this road to recovery. And, you know, wasn’t just accessible to them 24 hours a day or anything like that. So I think just in general grief is a is a really huge part of it. And I think that’s the hardest part for me was the grief.
Bill Gasiamis 1:19:20
The loss of identity is very interesting one I speak about that in my book as well. I think it’s chapter three. And the good part about that is you can rehabilitate your identity really quickly. Yes, that’s a good part about it. You can become involved in all those things that you’re become involved in to keep you busy for another 80 hours a week, but just in a different way. And you pick up relationships in those new spaces, just like you were interacting with people in those old spaces. So that’s really cool.
Bill Gasiamis 1:19:59
The friends one is an interesting one, because many stroke survivors experienced the same thing. It says more about the people who kind of step away or don’t know how to handle it than it does about you. And I think it’s a blessing that they move away and step away.
Bill Gasiamis 1:20:23
Because if they’re incapable of supporting you, or being okay, or normal, or just be there, they’re incapable of doing that, then I think that would make your recovery harder, it would cause some stress or some aggravation, or whatever. And I think they do a really good job of going. I don’t know what the hell I’m doing here. I’m out of it. I’m gone. It seems weird, and it seems like a bit of a letdown and that they’re not doing what you would expect of them. But I think they’re doing the best thing they could possibly do. And that’s like, go away.
Jenn Williams 1:21:02
I mean, if that if that would be hard for them, then I don’t want them to be present. That’s not fair to either of us. I do also want to just talk a little bit about gratitude. I, my counselor asked me one day, he kind of said, Oh, I bet if you could go back in time and change it, you would. I thought about it. And I said, No, actually, I wouldn’t. And he said, Okay, you got to explain that to me. And I said, I have met people that I never would have met. Without being on this journey. I’ve connected with people.
Jenn Williams 1:21:47
And it changed me for the better. I have more internal peace. I don’t feel the need to push myself to work 80 hours a week anymore. I’m happier. I appreciate so many little things. Every day, I write down three things that I’m grateful for. And sometimes I’m grateful that I have really nice sheets on my bed. That’s okay. And I never would have had that much gratitude prior to my injury.
Bill Gasiamis 1:22:19
I relate to that. That’s why I wrote a book called The Unexpected Way That A Stroke Became The Best Thing That Happened. And people think I’m mad.
Jenn Williams 1:22:25
I know. I saw your title. And I was like, yes.
Bill Gasiamis 1:22:32
People think I’m mad. And it’s like, I’m not saying anything positive. Although there is positive things. I’m not saying that pain is good. And all this is like, we should suffer indefinitely. And it’s suffering is amazing. With a purpose it’s okay. It’s manageable. Yeah. Suffering, and then you convert it into a purpose, like a podcast, or helping other people at a homeless shelter or whatever. Like it transforms. I can’t explain how, but it just does.
Bill Gasiamis 1:23:07
And it makes it less shit. And then that’s all I want. I want it to be less shit than it was yesterday. And if it is, then that’s okay. And yeah, it’s like, I don’t know, I would love to learn the lessons without going through stroke. But it didn’t happen that way. I wasn’t that wise, I wasn’t that intelligent.
Jenn Williams 1:23:36
We apparently had to get some knocks in the head to get the point across.
Bill Gasiamis 1:23:42
A bit thick in the head. So it’s something needed to change, maybe a bolt of lightning or something or jolt or something. It’s just intensely crazy that you would say that that you would say I wouldn’t change it. I have met so many people that wouldn’t change. What happened to them? It’s just crazy. And it’s counterintuitive. What is something that stroke taught you? Did I already ask that?
Jenn Williams 1:24:19
I don’t think so. If you did, I forgot and we’ll say it again. Ah, gosh, something that stroke has taught me? It has taught me so much. I guess it’s hard to pinpoint one thing. I would say probably the gratitude piece obviously that’s a big part and then the it’s okay to advocate for yourself. It’s okay to ask questions about your health care. And I say It’s all the time and some people don’t like it, but your doctors or your employees, you can fire them.
Jenn Williams 1:25:05
If it’s not working, it is not working, and you can move on to the next. And that has been a huge change for me to say, You know what, this isn’t a good relationship, I’m moving on to the next person. And just having the self awareness and the comfort in saying that brings a whole new depth to self-advocacy for me internally, in all aspects of my life, it has taught me to stand up for myself in critical moments that I really need to.
Bill Gasiamis 1:25:41
That’s profound. It’s so good to stand up for yourself, and to take them on, and to just make them accountable. That’s all. That’s all you’re doing. Just checking out the information they’ve given you is accurate, and it’s applicable to you. And it’s the right information. It’s no different to what they do to you, when you get asked by 25 different health professionals in the hospital. What happened to you? So what happened to you? It’s on the chart, read the chart, but tell me what happened to you.
Jenn Williams 1:26:17
I told your nurse, I told this person, I said it in my last appointment.
Bill Gasiamis 1:26:23
Yeah. And it’s just what they’re doing is they’re double checking that they’ve got the right person in front of them that they are talking about the right and that’s all we need to do is okay. Okay, so what are you going to do about it? How you can help me? Why are we doing this? What’s the purpose of that? Why aren’t we doing this? Why aren’t we doing that? And you can do it nicely, you can have a lovely conversation with one of your medical professionals. If they don’t like it, that answering questions, well, then they’re the wrong person, and then you should fire them and you should move on and get somebody to help.
Jenn Williams 1:26:53
And I had one neurologist that my first appointment with her she was the other neurologist had left the practice and they had someone new. And during my appointment, she kept looking at her smartwatch. And she was like giggling, and so she was clearly reading messages on her smartwatch. And I got home, I was so angry. And my husband was like, try talking to her about it. Just try talking to her about it.
Jenn Williams 1:27:22
She’s new to the area, she’s the only one in the area. So see if you can work it out with her. And my next appointment, I said, I need to tell you that at my last appointment, I did not feel like you were as invested in my care as I am. And I really need us to be on the same page. And she sat right up and I’m like, oh, oh, I’m so sorry. I didn’t mean to do that.
Jenn Williams 1:27:45
Blah, blah, blah. And we had a great relationship until she moved again, gone through a lot of neurologists, but even just saying that, in my previous life, I would not have said that. I wouldn’t have ever said something like that. But I did. And it worked out and we got on the same page. And we took steps for my recovery. And it felt very collaborative. So even just saying something like that made a huge difference.
Thalamic Stroke Recovery, Grief, And ResilienceBill Gasiamis 1:28:16
Excellent. What would you like to say to some of the stroke survivors that are listening, that are just on their journey or a few years down the track? Things are a little bit challenging for them? What do you want to say to them?
Jenn Williams 1:28:33
Recovery is not a sprint. It’s a marathon. It is not three months, it is not a year, it is not two years. It is a life altering journey. And I will tell you, I probably spent the first three years of my recovery and grief. And once I got through all of that I was able to give back. I was able to start helping people and speak at support groups and do self advocacy work. And there’s a lot of really beautiful things that can happen on the other side of that grief. You just have to hang in there.
Bill Gasiamis 1:29:13
Thank you so much for joining me on the podcast. I really appreciate it.
Jenn Williams 1:29:20
Thank you. It was really nice to be here. I really appreciate it. I love talking about brain injury.
Bill Gasiamis 1:29:26
Me too. You wouldn’t have guessed from the 310 episodes. But yeah, I don’t mind that either. Thanks so much, Jen.
Jenn Williams 1:29:40
Thanks, Bill.
Bill Gasiamis 1:29:42
Thanks for joining us on today’s episode. If you are interested in a copy of my book about stroke recovery. You can grab a copy on Amazon by visiting on Amazon or by visiting recoveryafterstroke.com/book to learn more more about my guests including links to their social media and to download a full transcript. Head over to recoveryaftershow.com/episodes.
The post Thalamic Stroke: Symptoms, Treatment, and Recovery appeared first on Recovery After Stroke.
Uncover groundbreaking insights into stroke rehabilitation. Learn how advanced brain imaging may improve your recovery journey.
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Highlights:
01:30 Introduction
04:48 Understanding The Individual’s Specific Brain Damage
10:04 Brain Imaging For Stroke Patients
20:10 Having The Expertise To Look At A Brain Imaging
33:07 Personalized Rehabilitation For Stroke Survivors
39:14 Access To Rehabilitation Professionals And Their Roles
46:23 Importance Of Neuropsychological Assessments
56:29 Nutrition And Its Impact On Brain Recovery After A Stroke
1:01:42 Dr. Ettie Ben-Shabat’s Course
Dr. Ettie Ben-Shabat 0:00
This episode of the podcast is brought to you by headbed.com.au. Hello everyone. Before we dive into today’s episode, I wanted to share something special in Episode 305 I interviewed Catherine Randabel the inventor of HeadBed a product revolutionizing hair salons, especially for stroke survivors. The HeadBed provides excellent neck and head support during hair washes.
Bill Gasiamis 0:25
Reducing strain and promoting better blood flow. For stroke survivors. This means lowering the risk of arterial damage and easing concerns about another stroke it ensures a safe and enjoyable salon experience. I’m thrilled to support such a product that aligns with my mission of stroke prevention and safety.
Bill Gasiamis 0:44
In our interview, Catherine explained how the HeadBed ergonomic design prevents neck hyperextension a common issue increasing stroke risk with the HeadBed you can feel confident and comfortable at the salon knowing your health is prioritized. If you are a stroke survivor or you know someone who is the HeadBed is a must-have for your next salon visit.
Bill Gasiamis 1:06
Check out episode 305 For my full interview with Catherine and learn how this product can make a difference for those in the United States. Visit headbedusa.com to get yours today and enjoy peace of mind at the salon. I’d also like to mention my book The Unexpected Way That A Stroke Became The Best Thing That Happened. 10 tools for recovery and personal transformation.
Introduction – Dr. Ettie Ben-Shabat
Bill Gasiamis 1:30
It features inspiring stories from 10 stroke survivors and offers hope for those on the road to recovery. For more information visit recoveryafterstroke.com/book or search for my name Bill Gasiamis. This is episode 308 and my guest today is Dr. Ettie Ben-Shabat PhD, a distinguished clinician, researcher and educator, specializing in neurological rehabilitation with a focus on brain imaging.
Bill Gasiamis 1:58
She has a robust academic background holding a Bachelor of Applied Science in physiotherapy, a master’s in neurological physiotherapy, and a PhD in brain imaging and neuroscience. Dr. BenShabat is the founder of Brain Rehab Academy, an organization dedicated to educating clinicians on using brain imaging or personalized and optimized neurological rehabilitation.
Bill Gasiamis 2:25
She is also a senior clinician and a researcher at Caulfield hospital, part of Alfred health and an adjunct research fellow at Monash University. Additionally, she serves as a senior clinician at Renew Rehab. Her work involves teaching clinicians how to interpret brain images to enhance rehabilitation outcomes, and empowering patients by helping them understand neurological conditions better.
Bill Gasiamis 2:55
Dr. Ben-Shabat’s contributions to the field are widely recognized and she continues to impact both clinical practice and research in neurological rehabilitation. And now it’s on with the show Dr. Ettie Ben-Shabat, welcome to the podcast.
Dr. Ettie Ben-Shabat 3:10
Thank you for having me, Bill.
Bill Gasiamis 3:14
My pleasure. Thank you for being here. This is a really exciting opportunity for me, because when we met about a month ago, I learned something new. And what I learned was that there’s physiotherapy, and then there’s neurological physiotherapy, and they are two different things. And I didn’t know that stroke survivors will benefit from physiotherapy, but then they’ll also benefit from this other thing called neurological physiotherapy. But before we talk about those two things, can you tell me a little bit about your background? And how you came to be involved in this field?
Dr. Ettie Ben-Shabat 4:00
Yeah, sure. I actually started my career as a physiotherapist. And I did a Bachelor degree in physiotherapy, which I finished in 95, I think it was. And then after a few years, I discovered that I’m really really actually new since uni that I was really interested in neurological physiotherapy. So working with people that have neurological injuries, which means injuries to the brain or spinal cord.
Dr. Ettie Ben-Shabat 4:26
And so I try different areas. So when you finish physio, they kind of gets you to try different areas to make sure A that you’re competent with all the areas and B that you going down the path not because of that being your first option, but because he actually tried different things and you’re certain that if you’re going to specialize that’s what you want to do, or that you do something that you actually like.
Dr. Ettie Ben-Shabat: Understanding The Individual’s Specific Brain Damage
Dr. Ettie Ben-Shabat 4:48
Anyway, I went down that path of getting myself trained further in neurological physiotherapy. So I did a clinical Master’s in neurological physiotherapy. Repeat. And I went there thinking that I’m gonna learn lots of neuroscience and lots of brain imaging. And I learned some neuroscience and very little brain imaging.
Dr. Ettie Ben-Shabat 4:48
And it was a little frustrating for me, because I wasn’t getting the knowledge I really wanted because I had a had a sneaky suspicion that there’s a lot of information in the brain images that can really help me as a physio. And then an opportunity came up to do a PhD in brain imaging. So that’s what I did, I did a brand new, I did a PhD in brain imaging, it was a functional MRI.
Dr. Ettie Ben-Shabat 4:48
So it was about looking at how the brain works. And which areas are active when you do what sort of task, which is a bit different from diagnostic imaging, which is identifying which areas of the brain are affected by a lesion. And the difference between physiotherapy and your logic of physiotherapy, and I didn’t know that people don’t know that. But a physiotherapist is someone who’s responsible to help you get your movement back. So it might be because you had a back injury or a shoulder injury or a knee injury, etc.
Dr. Ettie Ben-Shabat 4:48
But then your logical physiotherapist specializes not just in giving you back the movement, but connecting the areas that order the movement, which is the brain to the areas that produce the movement, which is the different body parts. So not only do they need to make sure that the body parts work properly, they also need to facilitate that connection between the brain and the body part that got disconnected because of the injury.
Dr. Ettie Ben-Shabat 4:48
And sometimes this is really tricky, because you need to explore because different brains are different, and you need to kind of explore if I do this with that work, if I’ll try this with it with it. Will it work? And why did it work for one person and not another? There’s a lot of trial and error, which is why I was so fascinated by brain imaging because I thought that if I look at brain imaging, it will take some of the guesswork out of what I do.
Bill Gasiamis 4:48
Yeah, that is the key point, I think. So when I, when we chatted the other time over coffee. What happened to me was, I became aware that when I was doing physiotherapy and trying to get movement in my left side back and walk again, and coordination in my left arm, what I realized was that the amazing people helping me were pretty much working blind.
Bill Gasiamis 7:36
Because they had no idea what the inside of my head looked like they didn’t get access to the images, nobody said to them, this is what happened in a guy’s brain, this is where it happened. This is the damage. They didn’t do any of that. And, and I feel like the giving they’re given the client with half the tools. And that would make recovery, potentially hit and miss and take longer than necessary and then not be targeted. So you might have all that time and effort into the risks, putting those resources into that individual. And then you’re not getting the biggest return on your we’ll call it an investment into that person.
Intro 8:24
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, and doctors will explain things. But obviously, you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery.
Intro 8:54
If you’re finding yourself in that situation. Stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called Seven Questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition. They’ll help you take a more active role in your recovery. Head to the website now, recoveryafterstroke.com and download the guide. It’s free.
Bill Gasiamis 9:24
A few quite a few episodes ago I interviewed Dr. Amir Hadanny a hyperbaric oxygen therapy clinic, and he he created the same amazement and awe in me because previously I’d heard about hyperbaric oxygen therapy. There’s plenty of them here in Melbourne. Facilities that I could just turn up and pay for an hour session and then and get a, you know, sit in a tank and then get some therapy.
Brain Imaging For Stroke Patients
Bill Gasiamis 10:04
And although that seems like it’s a good idea at the time, again, were providing our ourselves to this resource we’re paying for this service. And then we don’t know what it’s doing or how it’s doing it, or whether it’s effective or whether we should keep doing it. And it’s kind of working blindly hit and miss, and what the difference between the conversation that I had with somebody else who had hyperbaric oxygen therapy, and Dr. Amir Hadanny was that they do really detailed imaging of the brain.
Bill Gasiamis 10:44
And they find penumbras in the brain areas of the brain, therefore there can be rehabilitated, that were missed earlier, because the imaging that they do is different, and it’s looking for places to rehabilitate. So tell me about the imaging that you do to what extent does it to what extent does it? How does it work? Like, what does it look for?
Bill Gasiamis 11:09
What does it do differently to standard imaging, which is, the version that I got was a you went in, they found the bleed, they heal the blade, then they had another look to see if everything looks good, and then that was it, there was no further investigation into those images. I mean, they’ve got him and then they don’t do anything with this resource, I find that amazing. But their role, it’s not their role. So I kind of get it.
Dr. Ettie Ben-Shabat 11:42
But they are doing something this imaging. So for example, in your case, you had a bleed, and they did imaging. So first of all, they had to sort out whether you had a bleed, or whether you had a blockage that caused ischemia, and each one of them will require different treatment, they also had to find out where that bleed is, and whether they need to drain it or not to drain it.
Dr. Ettie Ben-Shabat 12:05
So there’s various, the reason they doing these scans they call diagnostic imaging, is because they want to identify what the problem is, because they need to make a decision about how to treat. And when I say how to treat I mean medical treatment. So are they gonna have surgery or not which medication, etcetera, etcetera. There’s a different type of imaging, called functional imaging.
Dr. Ettie Ben-Shabat 12:32
And that shows you which parts of the brain are work, King, when, and usually, an example of that is a functional MRI, there’s some other scans such as spected, etc, in which you’re injected with a radio active, say, oxygen or radioactive glucose most of the time, and then they trace it to see how it’s distributed in the brain. And then they know which areas are compromised or not compromised.
Dr. Ettie Ben-Shabat 12:59
And they can also do tasks and find out which areas are more active with a particular task. So in a hospital, usually, you will get diagnostic imaging, and sometimes you get just the initial scan. But sometimes you get further scans down the track down the track, the functional images are not done all that commonly. And when they’re done, it’s usually in the context of say they’re about to do surgery, neurosurgery for someone with a tumor.
Dr. Ettie Ben-Shabat 13:32
And they want to find out because the area where the tumor is, is really close to say the motor area, and they want to find out exactly how much of the tumor is invading the motor area, are they gonna cause any damage motor damage when they do the surgery. So this is a clinical case in which they will use functional MRI as a standard clinical care. But for most people, this is not the case, the only scans that are taken, and diagnostic images.
Dr. Ettie Ben-Shabat 14:02
And my point is that those diagnostic images have a wealth of information, not just for the medical doctors with regards to what kind of medical treatment they need to give you, but also in terms of which specific area of the brain is affected. Because if you know exactly which area of the brain is affected, then you know what function will be affected. And if you know what function will be affected, then you know what you need to address in your treatment.
Dr. Ettie Ben-Shabat 14:31
And furthermore, when you look really carefully at the scans, you can tell whether a particular area is affected badly or maybe there’s a lot of potential for recovery. So you you get a sense of how much recovery you expecting to regain as a result of these injury.
Dr. Ettie Ben-Shabat 14:52
So for me, it’s really important because for example, the other day I saw someone and they had a lesion which was in a speech area but not a not an area that produces a speech in area that actually allows them to understand speech, which therefore meant that in the hospital, it was really important as a first port of call to find a way to communicate with this person, as opposed to assume that if you’re gonna go to him and speak to him, he’s going to understand you.
Dr. Ettie Ben-Shabat 15:23
That was not the case, so if you look at the brand new images, and you see that from the beginning, you’re already gonna be starting to communicate effectively this person, you’re probably going to communicate with them, like you communicate with someone who speaks a language different to yours, and you don’t have a common language. So even little things like that, that make a well a world of a difference to a patient. For this patient. That was a really big problem that no one could communicate with him.
Dr. Ettie Ben-Shabat 15:49
And all he could say was, yes, yes. So every, every time someone said something to hear me would say yes. And the clinician would assume that the yes meant, guess I understand or Yes, I’ll do Ito? Yes, whatever. So the long answer to your question is that there’s two types of images, diagnostic and functional images, I look at diagnostic images within the group of diagnostic images, specifically, in the context of stroke, there is what’s called perfusion images, and they look at how much blood is taken by different areas of the brain.
Dr. Ettie Ben-Shabat 16:28
So your case, for example, was a bleed. But let’s say they would have discovered that you had an ischemia than they would have used in another scan, or even within the same scan, would inject you with contrast, and then assess which areas of the brain have compromised blood flow. And by comparing the areas of compromised blood flow, and how compromised it is, they can determine whether it’s a penumbra or whether it’s actually the Impact call. So there’s different type of image images, everybody gets diagnostic images.
Dr. Ettie Ben-Shabat 17:05
And if you had a stroke, particularly of ischemic type, you would have had infusion images. And that’s the basis for decisions for treatment for the medical doctors. But if you have a brain imaging trained rehabilitation clinician, they can take a lot of information out of that can and then direct the whole team, including their own discipline. So for example, for that patient example that I gave before, I said, well, the highest priority is the speech language therapist, she needs to see him first before any of us and we need to prioritize her, so that she can help us communicate with this person. So it also changes how you structure rehab, as well.
Bill Gasiamis 17:51
It does change everything. And that’s the beauty of it is that I feel like even though I went through the process where there was a fair amount of communication, there was assessments, there was a whole bunch of people talking to each other, I still feel like that the image that they had the images that they had weren’t under utilized.
Dr. Ettie Ben-Shabat 18:17
I share this view with you.
Bill Gasiamis 18:20
Okay. And that the the person who was helping me walk, didn’t know about what you just said, they didn’t know that they knew that they had somebody that couldn’t walk properly. And then what they were going to do was go through the standard usual techniques, and that I might apply to every person to get me to walk. And and although I got a result, which I’m very happy about, they perhaps work I feel like they’ll work in blind.
Bill Gasiamis 18:56
And then I think about other stroke survivors, right, I think about the stroke survivors, who perhaps have been told, you know, that crazy sentence, that’s about all you can expect, or you know, you’re never going to walk again or things like that. And then I start to get really annoyed that a that whatever be said to somebody and be that there’s probably resources and images of that person’s brain that have never been looked at further than the diagnostic part, which was you’ve had a stroke, it’s in this area.
Bill Gasiamis 19:30
We need to support you to leave hospital and then you need to go to rehab, but then you’re on your own. So I get really challenged about that. And I think there’s a lack of understanding and awareness that there are specialties to the field of physiotherapy that are specifically aligned with neurological rehabilitation. But I don’t know man, it feels Like to me that I went to a physiotherapist, not somebody that had any idea about neurological issues, although they may have understood the simple part of the task, right?
Dr. Ettie Ben-Shabat: Having The Expertise To Look At Brain A ImagingBill Gasiamis 20:10
This guy had a stroke, and he can’t walk anymore. And then we need to help him walk, although they definitely nderstood that part of the picture. I imagine if I showed them an image, of my MRIs, that they would be looking at it thinking, well, this just doesn’t look like anything just as much as I looked at it and couldn’t read anything about it.
Dr. Ettie Ben-Shabat 20:36
Look, it’s not a simple thing to do, which is why they don’t teach it at university. And not many clinicians have that knowledge. I mean, I didn’t have that knowledge, I had to go and do a PhD to be able to look at brain images, and then figure out a way of how to use it. So it’s not something that is easily accessible to people. And we have to, I think, appreciate the time that it takes to acquire knowledge to acquire knowledge.
Dr. Ettie Ben-Shabat 21:04
And the time that it takes to train and priorities to train, I think, yeah, they are the limit limitations of the system is we working, I guess, but I think that the role of a patient to be their own advocate. So for me, it’s really important that my patients or clients are really well educated, for several reasons. One reason is that the health system is changing. It’s changing rapidly since COVID.
Dr. Ettie Ben-Shabat 21:37
And it’s struggling, which means services are gonna cut down gonna be cut down. And it’s not only in Australia, it’s worldwide. And there’s less people interested in working in healthcare. So we have this problem of larger population that we service and fewer clinicians that need to give the service. So for ever, the system is trying to figure out a solution.
Dr. Ettie Ben-Shabat 22:01
And often the solution involves less services, which therefore means that the patients or the clients must be more educated, because they’re going to need to be their own advocate. So I think it’s not healthy. Or let’s say it’s not a positive attitude, they think, Oh, I can initiate you know that, because that’s not going to get you in. But I think if you educate yourself with the fact that this knowledge can be obtained, can be accessed can direct my rehab, where can I find people that can help me with that kind of information that I need.
Dr. Ettie Ben-Shabat 22:40
And as 200 clinicians have already trained so there’s a body of clinicians out there that are they’re starting to be a body of clinicians out there that are knowing or let’s say know more than others how to look at brain scans. And I want to take you up on one more point that you mentioned, actually, two points one about if my, if my physio, while they just did standard walking.
Dr. Ettie Ben-Shabat 23:07
Which is true that the common view out there in the physiotherapy world is that you treat the symptoms that you see. So you assess someone, you find out what the symptoms are, and then you treat them. So if they have a problem or working, you treat them by practicing walking with them. But my point is that walking can be a problem because there is the muscles are not working properly.
Dr. Ettie Ben-Shabat 23:32
Or it could be that there is spasticity. Or it could be that their sensation is affected. Or it could be that the coordination of the different muscles are affected? How do you know which one is which, without looking at the brain images? The answer that an ordinary physio would give you, oh, we can test for all those things. To test each one of those things is an extra hour if you do it properly.
Dr. Ettie Ben-Shabat 23:57
So for hours are gone for hours of therapy in a self help service in which the time in rehab is reduced. But if you look at the brain images, you straightaway know which one of those four are playing a part in the problem of walking, and therefore which one should I address first and which one I’m gonna instruct them what they need to do with etcetera, etcetera, depending on how much time I’ve got.
Dr. Ettie Ben-Shabat 24:22
The point is that when you look at the brain imaging, you can really make your rehab as efficient as efficient as possible. That’s the way I look at it. And there was something else he said. I can’t remember maybe answered it when I talked about brain imaging trained clinician, but I really do think that we can’t be frustrated with the clinicians. They work in a very difficult system under very difficult circumstances. I think we need to understand There’s their perspective as well. It’s not that they’re not doing their best. It’s just that they’re limited.
Bill Gasiamis 25:08
Thank you for that little reminder. I know, I’m not really frustrated with my clinicians at all. I’m frustrated with the system. And I’m frustrated that I’ve been learning about neurological physiotherapy 14 years after the fact. That’s what I’m frustrated with, not that anyone did anything wrong by me. Nobody did. I got amazing care, and most stroke survivors do.
Bill Gasiamis 25:36
It’s that I wasn’t educated enough to know that and how could I be, I was not a scientific person, especially not in, neurological side of science. And then I never had a stroke before, I never knew anyone who had a stroke, like, I’m completely ignorant. And that’s the point is that we are ignorant, and we’re desperate for information. And I love the work that you’re doing. I love the fact that you’re training people to be able to read images and have a different approach to physiotherapy.
Bill Gasiamis 26:11
And that’s exactly it. I, my heart goes out to all the stroke survivors. So I come from that side of the fence. And it’s like, I wish I could help them sooner, quicker. That’s why we’re doing this interview, to educate them, and to make them their own advocates. Because the people who do listen to this podcast are definitely their own advocates, they are looking for information and solutions to their problems.
Bill Gasiamis 26:36
And they’re open to almost anything, most people, they’re probably limited, limited by resources, and time and energy and all that stuff. So if we, you know, my aim is to sort of, to shorten the distance between the challenge and then the solution and to find the right one quicker. So I interviewed doctors and researchers all around the world world for these types of reasons.
Dr. Ettie Ben-Shabat 27:06
Which is why I love what you do. I think you’re doing great work.
Bill Gasiamis 27:11
Thank you. And I suppose at the same time, I’m being a little bit of a devil’s advocate, you know, I’m kind of saying, Okay, I’m gonna put the squeeze on you, I’m gonna make it your responsibility as well to be better trained, physiotherapist better educated, so that when you’re got somebody in your office for an hour, you’re giving them the best level of care that you can.
Bill Gasiamis 27:34
I don’t expect somebody who came out of uni, after four years to know everything? Of course not. And I don’t expect somebody after 10 years, to know everything. However, I’d love it if everybody was always looking for better ways to support their patients, their clients, etc. And I think that most people are like, let’s be honest, I’m not saying that anyone out there is doing a terrible job at supporting stroke survivors with the resources and the Oh, my gosh, and the stuff that we’ve just been through in the last few years.
Dr. Ettie Ben-Shabat 28:11
And the likelihood is that you were given your rehab in a rehab setting, in a rehab setting. Even if the junior physio was not particularly trained in neurological physiotherapy, the one above them would have been their senior or the senior above the senior. So somewhere along the line, that would have been the right person keeping an eye on what the person who was treating you doing.
Dr. Ettie Ben-Shabat 28:39
So that’s one thing. The second thing is that what I’m doing is not just good for physios, it’s good for occupational therapists, speech and language therapists and neuropsychologist. They’re the sort of people that are taking my courses, rehabilitation, rehabilitation physicians, who are doctors that specialize in rehabilitation, they come into my courses as well, because the idea of where the lesioning is relevant to each single one of those discipline, I’ll give you the example of an OT because I remembered what I wanted to say before.
Dr. Ettie Ben-Shabat 29:17
You were talking about the fact that sometimes, if someone would have told you or you can’t walk, you wouldn’t have liked that at all right? There is an area of the brain, the primary motor cortex. It’s the area, the main area for movement, and it’s a quite small area of the brain and it goes from the middle part of the brain all the way to the outside, and it’s a narrow strip kind of thing.
Dr. Ettie Ben-Shabat 29:43
And they’ve done all sorts of interesting studies more than a decade ago, where they use TMS transmagnetic stimulation to stimulate different parts of that strip to see how much movement can this person acquire it They did things like well, if nothing if we can’t produce anything at all, any movement at all, by stimulating the motor cortex, we know that this person is unlikely to recover that particular movement.
Dr. Ettie Ben-Shabat 30:13
And then they tracked them for a while. And they so Oh, yes, they didn’t recover. And they did that with upper limb. Cathy Stinear
is the researcher from New Zealand, who was the first person to work on that kind of algorithm, in which you use that kind of stimulation to determine who are the people that are going to recover what people that are not going to recover.
Dr. Ettie Ben-Shabat 30:38
So sometimes there are particular areas of the brain that are affected, that we know that it will be extremely difficult, if not impossible, to recover from. And I want to give the example of upper limb. So with strokes, particularly middle cerebral artery kind of strokes, MCA strokes, which are the most common strokes, unfortunately, the arm and hand area is smacked in the middle of the territory of that particular artery.
Dr. Ettie Ben-Shabat 31:11
Which means in a lot of people that have stroke, it might be that the arm is affected, and it might be affected quite badly. So my point with this kind of factor is that if you look at the brain images of this person, and you look at how much of the primary motor cortex is intact, and how much of it is destroyed, it will give you an idea of how much recovery the upper limb can have. So will the hand function, or will it be only the elbow that will function or the shoulder.
Dr. Ettie Ben-Shabat 31:45
So when you look at the primary motor cortex, you can look at which areas are gonna recover and which ones are not in then, for example, one of the most popular treatments at the moment is intensive upper limb rehabilitation, which is extremely effective if some of the primary motor cortex is intact. On the other hand, if the area of the upper limb in the primary motor cortex is not intact, it’s all damaged by the stroke, then no matter how hard you’re going to work with this person, they won’t be able to use their hand like they did before, or sometimes not even for any function at all.
Dr. Ettie Ben-Shabat 32:27
And I think this is really important. I know that a lot of stroke, people don’t want to hear that. And that’s okay. Maybe, if you don’t want to hear that, then ask people not to tell you that. But would you want all the time to be invested on that function? Or should you be asking your clinician, let’s create a treatment program that in the two or three or whatever four weeks that we’ve got, together, I achieve the most I can and let the clinician prioritize for you, or at least tell you what’s more likely to recover? What will require more work.
Personalized Rehabilitation For Stroke SurvivorsBill Gasiamis 33:07
I completely agree with you. Do you know why I completely agree with you? Because the evidence of doctors saying that to patients comes from stroke survivors who have in the very early stages of diagnosis, after stroke, while in hospital recovering, not at physio, have had doctors come into family and say like, he’s probably going to be a vegetable or he’s probably never going to walk again, all that kind of stuff.
Bill Gasiamis 33:37
They’re the ones that are the ones that cause unnecessary discouragement, before, there’s been enough time to determine exactly where the challenges are. Most stroke survivors are pragmatists. They may not have initially accepted the fact that their arm doesn’t work. But if it’s not working, and it’s not getting better, many stroke survivors will just understand that there is no medical professional going to allocate X amount of time to a hand that they’re not likely to get a result from.
Bill Gasiamis 34:16
I interviewed many, many years ago. Dr. Michael Merzenich, the godfather of Neuroplasticity and before I interviewed him I met him in Melbourne he was at the Florida Institute and I went and asked him a question after his presentation and it was why will Neuroplasticity be good for some people and why won’t it work for other people trying to understand my own kind of situation.
Bill Gasiamis 34:45
He said we’ll it just depends on how much damage and brain cell death there has been and if it’s catastrophic and wide and broad. Well, you don’t have the ability to rehabilitate those things, but also you don’t have a lot of time. What do you do first? Where do you put the resources? So you know, you have to be very careful that you’re not allocating resources into the wrong space. So you get the outcome where you can you allocate the resources where you can get an outcome.
Bill Gasiamis 35:19
So I know what you’re saying, and I completely agree with you. And I don’t think that I’ve ever had a stroke survivors say to me, that it was in rehab, where they said, you’re never going to do this, again, and you’re never going to do that again, it was in those very early acute phases of the condition and the recovery, you know, so.
Bill Gasiamis 35:43
But anyway, but look, also, you can also stroke survivors in such a bad way, when that’s happened to them, they don’t have the capacity to even understand what people are saying to them sometimes. So it’s very easily to misinformation, to read it the wrong way to misunderstand that. So I, I know, it’s not as black and white as I painted.
Dr. Ettie Ben-Shabat 36:09
I also think, doctors go by statistics, and statistics, by definition, involve a large number of people within a large number of people, you don’t know who the one who did better? And who’s the one who are the ones who didn’t do well. So you kind of that’s the other point that I try to explain to people. When you look at the brain imaging, you get out of the realm of statistics, and you get into personalized rehab or personalized you or personal, personalized potential for recovery.
Dr. Ettie Ben-Shabat 36:47
You’re not in a statistics anymore. It’s like what does this means to me? Bill, with my images, not as part of a statistics of the statistics for people who have brain bleeds is that 40% of them never survived the first year or whatever. The statistic is something as hard as that. But how will they manage? What was their age? Do they bleed drain or not? There’s a lot of factors that determine whether a person is going to survive or not. So it really, in my view, it needs to be a lot more personalized than relying on those large statistics or statistics of large populations, I should say.
Bill Gasiamis 37:31
You’re right. It’s exactly what they’re going by and the question that I encourage stroke survivors to ask in that situation, or even later, after they’re out of the acute phase. And they’re thinking about what the doctor said that time is. Am I one of those people? Am I that statistic? Or am I going to be in the other statistic?
Dr. Ettie Ben-Shabat 37:53
I going to be the 60% or the 40%?
Bill Gasiamis 37:56
And if you, if there is a possibility for rehabilitation, it’s to it’s to do the work to be that statistic, you want to be not the other one, if it’s possible. That’s what I encourage them to do. As we continue our conversation I want to talk about and tell me which order you want to do this in, I want to talk about the course that you run, and basically how it goes like, where you know that like the modules I don’t know what and also I want to talk about that PDF that you sent me, which is going to be available for people to download from the website from the show notes of this particular interview.
Bill Gasiamis 38:39
Which is about teaching people a little bit about neurophysiotherapy, and when it’s appropriate for somebody like us, like stroke survivors to get some feedback from a neurophysiotherapist. So which order do you want to take that? Do we want to talk about the PDF that I’m going to make available? Or should we talk about your course.
Dr. Ettie Ben-Shabat: Access To Rehabilitation Professionals And Their RolesDr. Ettie Ben-Shabat 39:14
I’m happy with whichever order but maybe we will start by talking about that PDF, that PDF will be available in your show notes. And also it will be available on my website, which is www.brainrehabilitation.org./rehab_ team so you can access it from a couple of places. And the idea of this PDF is to help clients, patients, people who had neurological injury or stroke, understand what sort of professionals they might need.
Dr. Ettie Ben-Shabat 39:52
Because the rehab team could be large or it could be small. You might need a certain professional at one time but not in other or you might discover down the track that you need someone to work with you. So the idea is for people to have in one place all the different professions what they do, why would you see them? And what sort of questions you might ask them.
Dr. Ettie Ben-Shabat 40:13
Again, it’s that concept of giving people the ability to be their own advocates, their own managers have their conditions to have the control of the reins, not rely on someone else to have the control for them. That’s what I had in mind when I created that particular resource for for people.
Dr. Ettie Ben-Shabat 40:37
So yeah, It need explains a little bit about the difference between neurologist and rehabilitation physicians, because they’re two different doctors, the neurologist is usually involved in the more acute stage, and we things that might go wrong. But in some hospitals, there’s not a neurologist that is going to see you it’s going to be a rehab physician from the beginning.
Dr. Ettie Ben-Shabat 40:56
Or if you’re from America, it’s called the physiatrist. So there’s also little differences like that. So don’t think you need to have all the different professionals you may not need all of them. So that was one example. The other example was a physiotherapist. Now some people call themselves near logical physiotherapist, whilst other calls them call themselves physiotherapist. I’m not fazed at all with the title.
Dr. Ettie Ben-Shabat 41:25
What I want to know is whether this person has special interest in urology? If so how long have they been working with patients with neurology? And what kind of additional courses they’ve been taking? So it’s not? That’s me personally, that I think if I had a stroke, that’s the sort of questions I would ask my physio. Do you have a special interest in urology? How long have you been working people with neurological condition? And what additional training have you been taking in the area?
Dr. Ettie Ben-Shabat 42:00
And you have the right to ask those questions? And I think sometimes people feel a bit funny about asking it. But you can ask it in a nice way you can say hey, I know that neurological Physiotherapy is a big area, and some people call themselves neurological physiotherapist and other node. But I’m really curious about what sort of neurological conditions you worked with, what sort of injuries you worked with? Or just ask it in a nice way.
Dr. Ettie Ben-Shabat 42:27
So people don’t feel threatened? Because those questions can can feel, I think if a clinician is insecure, because we are all humans, and we all have our flaws. Some people are insecure. And sometimes if you ask questions in a particular way, and they’re quite confronting questions, it could put them in the backfoot.
Dr. Ettie Ben-Shabat 42:49
So if you aren’t going to ask a confronting question, ask it in a nice way from a good place. You’re coming from a place of wanting to understand where they at not from a place of making them feel like they don’t know enough kind of thing. That’s the way I see it.
Bill Gasiamis 43:10
I agree. And then we talked about, there’s a couple of other things that you actually have. Where you reference you talk about.
Dr. Ettie Ben-Shabat 43:20
I’m talking about occupational therapists. They’re excellent problem solvers. So sometimes, and I see that quite a lot. Sometimes people go back home after stroke. And then they all of a sudden discover that there’s something they want to do that they didn’t think about, and they can’t do it. So sometimes the problem-solving process of how do I go about doing it?
Dr. Ettie Ben-Shabat 43:39
Or how do I go about going back to work or going back to uni, or going back to do the things I like doing, or dressing myself for eating, they’re the sort of things that occupational therapists can really help with. They’re good with that speech and language therapist would help you with communication issues, but also swallowing swallowing is a big thing.
Dr. Ettie Ben-Shabat 43:59
Again, I keep on saying to Speech and Language Therapists, when you look at the brain images, you can see who are the people that are going to have problems with swallowing, and which ones are going to recover from it well, and which ones are going to work much harder at to get back the swallowing.
Dr. Ettie Ben-Shabat 44:16
Most of the people get this following back. It’s just that depending on where the lesion is, that will determine what sort of work you’ll need to do with them and how long or how slow or fast it’s going to be. And sometimes I find that it’s really helpful to tell clients, look, this is going to take a long time, but eventually you’ll be able to talk.
Dr. Ettie Ben-Shabat 44:41
Yeah, or you’ll be able to confess or you’ll be able to give a talk in front of audience or whatever it is. Sometimes just giving them that knowledge that it will be possible in the future. Give gives people hope, gives them a target to work towards. And I I think that’s really important.
Dr. Ettie Ben-Shabat 45:02
And so that speech and language therapist, what else do they have their own neuro psychologist, neuro psychologists are really important because neuropsychologist, usually they’re involved down the track. So no one really would give you a neuro psychology assessment before three months. And the reason is that neuro psychology tests are long.
Dr. Ettie Ben-Shabat 45:25
There’s not many neuropsychologist, and it’s an expensive service. So hospitals don’t have a lot of neuro psychologists, they have to prioritize. And in the first three months, when things change so much, there’s no point really doing a full on cognitive assessment.
Dr. Ettie Ben-Shabat 45:44
So the cognitive assessment that the neuropsychologist do is very thorough, and it involves different aspects and abilities of thinking. It involves memory, it involves speed of processing, it involves a lot of ideation, how are you coming up with idea how you problem solving, there’s lots of different aspects of it.
Dr. Ettie Ben-Shabat 46:06
And so doing it down the track gives you information about what sort of thinking abilities or cognitive abilities are affected. So if you’re finding that you’re struggling with something, after three months, you might want to get a neuro-psych assessment.
Importance Of Neuropsychological Assessments
Bill Gasiamis 46:23
I had a neuropsych assessment. And what was interesting was, nobody mentioned the neuro-psych assessment at all, I went to my psychologist who suggested a neuro-psych assessment because I was having trouble with making sentences and remembering the sentence that I wanted to say, and then pausing in the middle of a sentence and never finishing it, and all sorts of things, memory issues at the beginning.
Bill Gasiamis 46:52
And because I didn’t understand that I could go and get a private consultation with an a neuro psychological assessment, I waited about, I would say, about nine months to actually get one through the public system. And by the time I got to the neuro psych assessment, and the guys took me through my paces, it was very thorough took so long, I was exhausted at the end of it.
Bill Gasiamis 47:17
But they reported back that I didn’t have any serious neuro psychological challenges that wouldn’t come good. And, and I kind of felt that going into the assessment anyway, because so much time had elapsed, and things had settled down in my brain so much. And I had started to regain all these functions. So I didn’t understand them. Why? Why they wouldn’t give me a neuropsychological assessment.
Bill Gasiamis 47:52
But or suggest that but now that you’ve described that, it’s exactly my experience, so much change for the positive. That was if that I think it would have been leading me down the wrong path. If I had had a neuro psych assessment early on. Because I would have had information that wasn’t accurate nine months down the track, it would have been completely, that’s a different person that wasn’t.
Dr. Ettie Ben-Shabat 48:19
Or even worse, it would have been demoralizing for you.
Bill Gasiamis 48:23
Maybe, yeah I never thought about it like that.
Dr. Ettie Ben-Shabat 48:27
I think it’s important to remember that neuropsychologist is excellent. But let recovery, spontaneous recovery happen. Because in terms of cognitive treatments, a lot of the a lot of the treatments are come compensatory, so not all of them, but most of the ones that are used in the health system, at least in Australia are compensatory. So when we think about treatment, when you’re a clinician and think about the treatment, you think about, is it compensatory?
Dr. Ettie Ben-Shabat 48:58
Or is it a rehabilitative kind of approach? So this person can’t walk? Or this person can’t move their hand? Are they going to be able to move a walk in the future? If I think the answer is yes, then I go ahead and do everything I can to get that back.
Dr. Ettie Ben-Shabat 49:19
But if I think they’re not gonna get it back, like the example we used off the hand before, then I’m gonna try and do things to make it easier for them to manage the world with a problem that they have. So one of them is about changing is about plasticity. And the other one is about what kind of scaffolding can we do around this challenge to make it possible for the person to do whatever it is that they want to do.
Bill Gasiamis 49:49
How can we compensate? So one of them is Neuroplasticity, it’s rewiring and the other one is compensating?
Dr. Ettie Ben-Shabat 49:55
Yes. So one is rehabilitate and the other one is compensate. And if I was to bring all rehab into the most basic principles, they’re the two principles am I’m trying to make these better? Or am I accepting the fact that this particular challenge is not going to get any better? So, with cognitive except for the Arrowsmith program, which is definitely rehabilitative.
Dr. Ettie Ben-Shabat 50:21
A lot of the other neuropsych approaches or psych approaches in general, no, I should say neuroscience or cognitive treatment, I should say, are compensatory, like a lot of the memory strategies for people to cope with memory are not exercises to improve memory, there are using diary or different tools that can help you to improve your way of coping in the world with reduced memory or compromised memory.
Dr. Ettie Ben-Shabat 50:50
So the other thing to remember, bear in mind is that when you do the assessment with a neuropsychologist, you’re not wasting time by waiting for the neuropsychologist, because most of the time, they’re not going to give you a rehabilitative treatment, they’re not going to give you a treatment that is going to change the deficit and get back the memory that you lost.
Dr. Ettie Ben-Shabat 51:14
They’re gonna give you tools to work around it. So I think people need to understand that perhaps neuro psych, the urgency of neuro Psych is not let’s, let’s say there is a trade-off, you’ll be better off doing it later when all the cognitive processes settled before, before getting that expensive assessment. And then once you’ve got the assessment, yeah, there’ll be some compensation, but some, you can still rehabilitate. So that’s a conversation for every person with their particular deficits. I hope it’s not a complicated answer.
Bill Gasiamis 51:55
It’s a necessary answer. I think it’s a good answer. You mentioned Arrowsmith program. That’s Barbara Arrowsmith. Somebody who I’ve listened to present as well. Who is somebody who has done amazing work in the rehabilitation space. So anyone who is curious, and is listening and making notes, make a note of Barbara Arrowsmith go just check out her work, because she does amazing work in this space, and I heard Barbara speak with Michael Merzenich in Melbourne a few years ago, way before lock-down.
Dr. Ettie Ben-Shabat 52:28
I think we were were both in the same home and we didn’t even know it because I’m a Melbourne person as well.
Bill Gasiamis 52:38
Yeah, it was in. What was it down there at Federation Square? Yeah. Okay. Awesome. I love that we were both there. So this, I love your list. I love your PDF that, people are going to go and get from brainrehabilitation.org. Because it’s like a who’s who in the rehabilitation space. And it says this is what the person’s title is, this is what they do. This is why you might need to speak to that person. As we continue down the list. There’s a couple more to talk about. And I think you’re up to social worker.
Dr. Ettie Ben-Shabat 53:20
So social workers are underestimated, in my opinion, I think every patient who had a stroke or any other neurological injury needs to see a social worker, because they have phenomenal knowledge on what services are around. So except for the emotional support that they can give.
Dr. Ettie Ben-Shabat 53:39
They also their job is to know exactly what sort of services are available and what you can access to help you with whatever challenges you’ve got, be it a day groups be here to help at home be whatever it is that you need. So there’s a wealth of knowledge and resources that you really need to get in touch with, I believe, did you have a social worker? Did you meet a social worker?
Bill Gasiamis 54:07
No, I think I substituted my social worker with my counselor.
Dr. Ettie Ben-Shabat 54:13
Okay. That’s fair.
Bill Gasiamis 54:16
Which was really awesome. Because it was my guiding light. You know, my counselor was my guiding light, you might want to look at this, think about that, see this person, check out that person. She was amazing. So I think we got a lot of support there.
Dr. Ettie Ben-Shabat 54:31
Yeah. And dietitian is another one. So sometimes, well, for many people, neurological injuries associated with changes or what they eat, how they eat, how they taste, sometimes with traumatic brain injuries, often that taste like sense of taste changes, which is a massive risk. Because if your smell is affected, and you can smell the food that goes off in the fridge, and then you go and eat it, you’ll get very sick.
Dr. Ettie Ben-Shabat 54:59
So, dieticians are people that help you with a diet with what you eat, how you eat, how you take care of your food, etc, etc. And sometimes people after neurological injuries, lose weight or put on weight. So dieticians can also help you with guiding you, with regards to how you monitor what you eat, to make sure you don’t want to put on too much weight or lose too much weight, you want to stay around about how you were before the stroke.
Dr. Ettie Ben-Shabat 55:27
And then the nurses that can help you with all sorts of things that can happen with changes of medications and your symptoms, what to do with new symptoms, do I need to see a doctor need to see a doctor do I need to see a specialist, etcetera, etcetera. So they’re quite handy like and the GPs are really good as well. So you can always go to the GP and say, hey, look, this is what I’m experiencing.
Dr. Ettie Ben-Shabat 55:50
I’m thinking I need to see blah, blah, blah, whichever professional from that list you think you might see. And then they can discuss that with you. So use your GP as a bouncing, like as a sounding board to bounce your ideas off, do think about what you’re going to need next. But talk to people that you talk to professionals, people are there to help you make sure you use that. And in that little list that I’ve got it set up in a way that you can do like a little tick next to each one of them if you feel you need it. So you can easily visualize it. That was the aim.
Nutrition And Its Impact On Brain Recovery After A StrokeBill Gasiamis 56:29
I love it. The dietitian one I like particularly the questions that are what food should I eat to support my recovery? Are there any foods I should avoid? And I think in stroke recovery, if you’ve got a dietician who understands the neurological impact that food has, especially sugar, it’d be great if your dietitian was a little more knowledgeable about neurological recovery, because sugar is definitely one of those avoid categories in neuro neurological rehabilitation, and so is alcohol clearly, I mean, that’s obvious. But still, maybe you know your dietitian, it should be somebody that has a lot a little bit more time in the in the field and has perhaps a specialty or an interest in neurological recovery.
Dr. Ettie Ben-Shabat 57:23
And your book has a chapter on that which is worth reading too.
Bill Gasiamis 57:27
Yeah it does. My book has a chapter on nutrition. And I like to go to nutrition from the what I should avoid space more than anything. And because when I avoided caffeine, in many cases, dairy, in many cases, sugar, gluten, they really improved, my deficits, my deficits got better, and they decreased my fatigue when I avoided those foods. And I was just stunned by how much I could support my rehabilitation by doing that thing at home, you know.
Bill Gasiamis 58:04
And it didn’t cost extra to not eat sugar, and it didn’t cost any extra to not eat with the amount of bread that I used to eat, which was tons. So I love that PDF, we’re gonna make that available to everybody, the links will be in the show notes. So now tell me a little bit about, is there something else before we talked about your course?
Dr. Ettie Ben-Shabat 58:28
I just wanted to make a little comment about sugar. So sugar is problematic because it’s a pro inflammatory substance. And when your brain has an injury, there’s inflammation that’s going on there. So reducing the amount of sugar reduces or promotes less inflammation. So there’s few things and if you want to look more into that just look into just Google food to reduce inflammation.
Dr. Ettie Ben-Shabat 58:57
And you’ll find quite a lot of information about what sort of food to eat or not eat if you want to reduce the amount of inflammation in your body. And it’s not just brain inflammation, it’s gut inflammation as well. And there’s also a connection between the gut and the brain, which people are discovering now with research. So it’s an active space. I always tell this story.
Dr. Ettie Ben-Shabat 58:57
You were talking about my course. I’ll tell you a little thing that I teach people in my course. I teach them embryology, lot embryology but just a little bit of embryology. Embryology is how the baby developing the womb. And I’m talking three weeks when there’s no baby, there’s just group of cells, right? And when that group of cells develop, there’s two tubes that form first before heart before muscles before head before anything at all.
Dr. Ettie Ben-Shabat 59:23
One tube for the gut and one tube for the nervous system, the neural tube and the tube that will form the gut. And that link be between the gut and the nervous system exists there at three weeks when there is nothing at all. So, you know, there’s even evidence from embryology that the link between gut and the nervous system is close. And we’re seeing it more now we did research on the whole concept of inflammation, and what kind of the health of the bacteria in your gut influences the health of your brain, etc.
Bill Gasiamis 1:00:28
And to give a very simple version of the explanation of what it’s like, in the very early stages of a human being, it’s like a womb, it’s basically a gut and a nervous system, there’s a brain, there’s no nothing. And then the the heart and the brain actually come on after the gut. And then all of that starts developing later. So the, you know, the first part of it is kind of, you know, is a way to create nutrition for the nervous system. So that then it has the ability to spread and for the other organs to come online.
Dr. Ettie Ben-Shabat 1:01:03
I don’t know if it’s one or the other, because it’s very hard to tell. But that fact tells me that those are the two most important systems of our body, otherwise, why do they develop first? And why do they develop in such a parallel way? So that’s the sort of thoughts that this had in me, so I say to people be very careful in what you put in your gut, and what you put in your brain.
Bill Gasiamis 1:01:33
And especially when you’re pregnant, and what you put into your new developing embryos.
Dr. Ettie Ben-Shabat 1:01:39
Yeah, for sure.
Dr. Ettie Ben-Shabat’s Course
Bill Gasiamis 1:01:42
All right. Tell me about the course. Now, what I want to know is, I want to know, the type of people that have attended, as in, you know, what kind of backgrounds they have, what are they hoping to achieve? And what you take them through what they learn? And how long does it take to complete the course? And then what can they do with their course. So, you know, that doesn’t go to the additional learning points and all that kind of stuff, just so that people can understand how they can enhance their skills.
Dr. Ettie Ben-Shabat 1:02:16
Yeah. So the people who I teach are clinicians. So I teach physios and occupational therapists, and I teach neuropsychologist and I teach speech and language therapists, and I teach rehabilitation physician, registrar’s, which are doctors that are training to be rehabilitation physicians, etc, etc. And some nurses as well. So basically, it’s very similar to what you will see in that list of the rehab team.
Dr. Ettie Ben-Shabat 1:02:17
For the people that come to do the course. Most of I mean, with the exception of the social worker, and the dietician, most of them are people that come and do the course. And the reason they do the course is because they want to understand how to use brain imaging, how to do better rehab, how to do personalized rehab, more personalized rehab, that is based not just on the assessment, but also on what the brain images tell us.
Dr. Ettie Ben-Shabat 1:03:04
And there’s different levels of training, there is a basic training that people do on their own. And that’s how they get the basic skills, and they can start with more brain images. And then there is the advanced course in which I take people over seven weeks, and then they do additional studying on their own. And that’s designed to work with them every week, so that they really look at all the different parts of the brain and know how to identify all the different parts of the brain, they understand all the different types of images that can be in the film bag.
Dr. Ettie Ben-Shabat 1:03:55
So that’s where the different scans are put in, in the notes in the medical notes. And I also teach them how to understand the brain as a system. So the brain brain function is something that exploded over the last 20 years. And we know so much more about how the brain works. And we know that there are certain networks in the brain, the brain is divided in networks, and they’re responsible for different things.
Dr. Ettie Ben-Shabat 1:04:23
So by understanding what those networks are, and how they work and what they do, then you can look really carefully at which parts of the networks are affected, and therefore what do I need to do in my treatment? So there’s three parts really one part is to know the anatomy, so know how to identify different parts of the brain on the scan. The second part is about knowing about the different images.
Dr. Ettie Ben-Shabat 1:04:50
There’s so many different types of images. Which one tells you what Which one do you look at? That’s the second part. And the third part is about the brain function. How Do I know which part of our brain does what? And so it’s quite extensive the training.
Dr. Ettie Ben-Shabat 1:05:07
And you can always ask clinicians whether they had brain imaging training, and if so what sort of brain imaging training and then they’ve been trained with BRAC or with me then have got a full training. And usually, yeah, depending on the level of training people get certificate some of training as well. So that’s something you could ask for as well. And yeah, so that’s what I do. So my aim is to change the world, kind of, in my own little way.
Dr. Ettie Ben-Shabat 1:05:44
I would like to see patients getting better treatment. That’s what I really liked.
Bill Gasiamis 1:05:47
See were aligned. That’s what I was saying before, when I was having a go at everybody. I was saying that I’d like to see them better trained, is exactly how I was saying it just I had different words.
Dr. Ettie Ben-Shabat 1:06:00
Yeah. So that’s why I’m training clinicians. But I know that not everybody can get that. So clients or patients can also contact me if they want me to look at their brain images, you can find it via the website.
Bill Gasiamis 1:06:15
Okay, tell me about that. So what can you do like you can have a look at if somebody’s listening has had a stroke, and they haven’t had their images investigated? Is that the word as thoroughly as they may have wanted? You can do that and give them a report?
Dr. Ettie Ben-Shabat 1:06:33
Exactly. So when people approached me that way, then the aim for me is to understand where they at, understand their specific lesion and form some kind of idea of what do they need, the list of clinicians, that’s the sort of thing I do, what sort of actions do you need to take, and what are the people that can help you with those actions.
Dr. Ettie Ben-Shabat 1:06:55
So then I create that little report, and we have a zoom session together, and we discuss all of that. And, yeah, and the idea there, again, is to give people the control the knowledge and the control, if you have the knowledge, then you have the ability to advocate for yourself. If you don’t know, then you don’t know what you need to do. That’s why I think it’s really important for clients to have the knowledge.
Bill Gasiamis 1:07:26
I love that idea of having somebody that you can send images to that can look at them, give you a report, make that report available, so that then you can take to the people recommended. And this is what I said it’s decreasing, have the time to work out what is going to be the most effective treatment and where to put your resources and your investment. That’s exactly what I’m talking about. That’s brilliant.
Dr. Ettie Ben-Shabat 1:07:59
It’s actually quite simple to do and all people need to do is to get a copy of their brain scan. So on my website, there is a little if you Google, how exactly do I get my MRIs, you will find a little blog that I’ve written that explains exactly the seven steps you need to take to get a copy of your brain scans. And I personally think that everybody should have a copy of their brain scan a CD copy of their brain scan, so that they can show it to whoever they want.
Dr. Ettie Ben-Shabat 1:08:28
Because what if you decide to leave somewhere else in the world, somewhere else in the world and you’re going to see neurologist, someone else somewhere else in the world, at least you’ve got your own scans to show them. I think it’s really important. And there’s a platform here in Australia called Aura box that you can basically upload your images and say I’m giving Ettie a permission to see my images for a week.
Dr. Ettie Ben-Shabat 1:08:54
And then I can look at them, or you can send me your CD, there’s few options. But everything has become a lot easier these days because of digital access. So once you have your scan, it’s easy enough to share those images, with your doctor with your neurologist with someone elsewhere with someone in a different country.
Bill Gasiamis 1:09:18
Ettie, thank you so much for your time and all the information that you just shared. I really appreciate it. I think this is going to be an important interview that I am going to send people back to again and again. You know, there’s sometimes there’s those interviews, check that out, listen to that, go back. This is going to be one of those. And for everyone watching and listening. We’re going to have all the links all the resources that Ettie mentioned. We’re going to have him in the show notes and you guys are going to be able to go to Ettie’s website, which is brainrehabilitation.org and check out All those things in more detail. Thank you.
Dr. Ettie Ben-Shabat 1:10:03
Thank you for having me. And thank you for doing all this work. Because the more help people get, the more knowledge they have, the better off they are. I’m glad I could help.
Bill Gasiamis 1:10:15
Well thanks again for joining us on today’s episode, I do hope you enjoy the conversation with Dr. Ben-Shabat. If you’re interested in my book about stroke recovery, you can grab a copy on Amazon by visiting recoveryafterstroke.com/book. To learn more about my guests, including links to their social media and download the full transcript, head over to recoveryafterstroke.com/episodes.
Bill Gasiamis 1:10:40
A massive thank you to everyone who has left a review it means the world to me. Reviews are crucial for podcasts to thrive and your feedback helps others find this valuable content, making their stroke recovery journey a little easier. If you haven’t left a review, please consider leaving a five-star review and a few words about what the show means to you on iTunes, and Spotify.
Bill Gasiamis 1:11:04
If you’re watching on YouTube, leave a comment below, like the episode and subscribe to the show on the preferred platform to get notified of future episodes. If you are a stroke survivor with a story to share now’s the perfect time to join me on the show that interviews are not scripted, you do not have to plan for them. Just be yourself and share your experience to help others in similar situations.
Bill Gasiamis 1:11:29
If you have a commercial product that supports stroke survivors in their recovery, you can join me on a sponsored episode of the show. Just visit recoveryafterstroke.com/contact Fill out the form with your category and I’ll get back to you with the details on how we can connect via Zoom. Thanks again for being here and listening. I really appreciate you so you’re on the next episode.
Intro 1:11:53
Importantly, we present many podcast designed to give you an insight and understanding into the experiences of other individuals opinions and treatment protocols discussed during any podcast or the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.
Intro 1:12:10
All content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis the content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.
Intro 1:12:33
The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional.
Intro 1:13:01
If you are experiencing a health emergency or think you might be, call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department medical information changes constantly. While we aim to provide current quality information in our content.
Intro 1:13:17
We do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content you do so solely at your own risk. We are careful with links we provide however third party links from our website are followed at your own risk and we are not responsible for any information you find there.
The post Unlocking More Stroke Recovery: Dr. Ettie Ben-Shabat on the Power of Brain Imaging appeared first on Recovery After Stroke.
Understanding Prosopagnosia After a Stroke: Causes, Symptoms, and Recovery StrategiesProsopagnosia, also known as face blindness, is a condition that can significantly impact a person’s ability to recognize faces. This condition can be particularly challenging for stroke survivors, as it adds an extra layer of difficulty to their recovery journey. In this article, we will explore the causes, symptoms, and recovery strategies for prosopagnosia following a stroke.
What is Prosopagnosia?Prosopagnosia is a neurological condition characterized by the inability to recognize familiar faces, including one’s own face in the mirror. This condition can vary in severity; some individuals may have difficulty recognizing faces they have only seen a few times, while others might struggle to recognize close family members and friends.
Causes of Prosopagnosia After a StrokeThe primary cause of prosopagnosia after a stroke is damage to the brain areas responsible for facial recognition. Strokes can lead to brain damage in regions such as the fusiform gyrus, which plays a critical role in processing facial information. When these areas are damaged, the ability to recognize faces can be impaired. Other contributing factors include:
- Ischemic Strokes: These occur when a blood clot blocks a blood vessel in the brain, leading to tissue damage and loss of function in the affected area.
- Hemorrhagic Strokes: These involve bleeding in or around the brain, which can also cause damage to the facial recognition areas.
- Secondary Effects: Complications from strokes, such as swelling and pressure on brain tissue, can further exacerbate facial recognition difficulties.
Symptoms of ProsopagnosiaThe symptoms of prosopagnosia can vary widely among individuals. Common signs include:
- Inability to Recognize Familiar Faces: This can range from difficulty recognizing acquaintances to not recognizing close family members.
- Difficulty Identifying Faces in Photographs: People with prosopagnosia may find it challenging to identify faces in pictures or videos.
- Reliance on Other Cues: Individuals may depend on non-facial cues, such as clothing, voice, or unique features, to identify people.
- Social Anxiety and Isolation: The inability to recognize faces can lead to social withdrawal and anxiety in social situations.
Diagnosis of ProsopagnosiaDiagnosing prosopagnosia typically involves a combination of neuropsychological tests and imaging studies. Key diagnostic steps include:
- Face Recognition Tests: These assess the individual’s ability to recognize and differentiate between faces.
- Neuroimaging: MRI or CT scans can help identify areas of brain damage that might contribute to prosopagnosia.
- Neuropsychological Evaluation: A comprehensive assessment by a neuropsychologist can determine the extent and nature of the facial recognition impairment.
Recovery Strategies for ProsopagnosiaWhile there is no cure for prosopagnosia, several strategies can help individuals cope with the condition:
- Facial Recognition Training: Rehabilitation programs focusing on improving facial recognition skills through repetitive practice and cognitive exercises.
- Using Alternative Cues: Encouraging the use of other identifying features, such as voice, hairstyle, or clothing, to recognize people.
- Social Support: Building a supportive network of friends and family who understand the condition and can assist in social interactions.
- Technology Aids: Utilizing technology, such as facial recognition apps and software, to aid in identifying and remembering faces.
- Psychological Counseling: Therapy can help address the emotional and social challenges associated with prosopagnosia.
Living with ProsopagnosiaLiving with prosopagnosia requires adjustments and coping mechanisms. Here are some tips for managing daily life:
- Educate Others: Inform friends, family, and colleagues about the condition to foster understanding and patience.
- Develop a Routine: Establishing consistent routines can help reduce anxiety and improve social interactions.
- Use Memory Aids: Keeping a diary with photographs and names can assist in remembering and recognizing individuals.
- Join Support Groups: Connecting with others who have similar experiences can provide emotional support and practical advice.
ConclusionProsopagnosia after a stroke can present significant challenges, but with the right strategies and support, individuals can improve their facial recognition skills and enhance their quality of life. Understanding the condition, seeking professional help, and employing adaptive techniques are crucial steps toward managing and overcoming the difficulties associated with prosopagnosia.
Jim Moody’s Double Stroke Miracle and Prosopagnosia (Face Blindness): A Journey of Survival and ResilienceIn this powerful episode, we sit down with Jim Moody, a stroke survivor who experienced an ischemic stroke and a hemorrhagic stroke following heart valve surgery at the age of 49.
Jim’s YouTube Channel
02:33 Stroke Caused By A Heart Surgery
07:14 The Initial Deficits After The Coma
13:03 Dealing With Prosopagnosia
18:08 Mental and emotional health after a brain hemorrhage
23:04 Controlling controllable for stroke recovery
29:04 Managing emotional issues after a stroke
41:23 Recovery from vision loss and focusing on gratitude
47:16 Dealing With The Relationship Breakdown After The Stroke
51:52 Challenges with navigation and time management
1:05:32 Stroke recovery, self-criticism, and patience with others
Transcript:
Introduction – Jim MoodyBill Gasiamis 0:00
This episode of the recovery after stroke podcast is brought to you by headbed.com.au. Hey everyone, before we dive into today’s episode, I wanted to share something with you that’s really special. In Episode 305, I had the chance to sit down with Catherine Randabel, the inventor of HeadBed, a groundbreaking product that’s changing the game for hair salons and more importantly, for stroke survivors like us.
Bill Gasiamis 0:29
HeadBed is designed to provide exceptional support for your neck and head during hair washes, for stroke survivors, this means reducing strain, promoting better blood flow and decreasing the risk of damage to your arteries, easing your concerns about another stroke. It’s all about making sure you can still enjoy an amazing salon experience without compromising your health.
Bill Gasiamis 0:55
I’m incredibly excited to promote a product that aligns perfectly with my mission of stroke prevention and safety. In our interview, we discuss how HeadBed’s ergonomic design helps prevent neck hypertension, a common issue that can increase the risk of another stroke. With the BeadBed you can feel confident and comfortable during your salon visits, knowing that your health is being looked after.
Bill Gasiamis 1:22
If you’re a stroke survivor or know someone who is the BeadBed is a must-have for your next salon visit. Make sure to check out episode 305 of the podcast to hear my full interview with Catherine Randabel and learn all about the benefits and how this product can make a real difference in your life.
Bill Gasiamis 1:42
If you are in the United States, visit headbedusa.com to get yours today and enjoy peace of mind while indulging in a relaxing salon experience. I’d also like to take a moment to mention my book The Unexpected Way That A Stroke Became The Best Thing That Happened 10 Tools For Recovery And Personal Transformation.
Bill Gasiamis 2:04
It’s a collection of inspiring stories from 10 stroke survivors showcasing their incredible journey from adversity to personal growth, covering everything from nutrition and exercise to handling their emotional challenges. This book is a beacon of hope for those on the road to recovery. For more information, you can check out recoveryafterstroke.com/book or simply search for my name Bill Gasiamis on Amazon.
Stroke Caused By Heart SurgeryBill Gasiamis 2:33
Now, this is episode 307. And my guest today is Jim Moody, who at the age of 49 experienced heart valve surgery that resulted in an ischemic stroke and a hemorrhagic stroke, leading to the breakdown of his marriage.
Bill Gasiamis 2:52
This is a compelling episode, Jim shares his incredible journey of survival and resilience, detailing the life-threatening events that led to his strokes, the physical and emotional challenges he faced during recovery, and how he found hope and gratitude in the midst of adversity.
Bill Gasiamis 3:12
Join us as we delve into Jim’s story of determination and the lessons he learned along the way. Now it’s on with the show. Jim Moody, welcome to the podcast.
Jim Moody 3:23
Hey, thanks. It’s good to be here.
Bill Gasiamis 3:26
Lovely to have you here. Tell me a little bit about what happened to you.
Jim Moody 3:30
Yeah, so I was pretty healthy my whole life. I played competitive sports, most of my life. I was healthy weight, healthy everything. And then in 2013 I blacked out and had to take an ambulance ride to the hospital wasn’t sure what was going on. And little did I know, my whole life like I said, I was very healthy, very active.
Jim Moody 4:00
Little did I know I had a ticking time bomb on my chest. I was born with a congenital heart defect. So this is a little bit different story than probably most of your interviews. Most of yours are straight up strokes, or car accidents, or whatever, mine was the result of a heart surgery.
Jim Moody 4:18
So in 2013, I had to go have open heart surgery to replace a valve that I was born with an aortic bicuspid valve which means my valve was almost sealed shut, I was getting no blood flow to my brain and blacked out.
Jim Moody 4:35
So as a result of that surgery, I had a mechanical valve put in, everything was looking great. Well, I had an ischemic stroke. So during that surgery, sometimes some of the plaquing or whatever in the surgery will break loose and head north to the brain and that’s what happened.
Jim Moody 4:51
So I had an ischemic stroke that night as a result of the surgery and then it got worse. I had a massive brain bleed and the pressure was building up so much in my skull, my brain was crushing itself. They said, that I would never live, they told my family he’ll never make it out of here and he’ll never open his eyes again.
Jim Moody 5:13
So I spent eight days I went in under general anesthesia had heart surgery, never woke up until eight days later, when I was in a coma that whole time being kept alive on ventilators and life support systems feeding tubes. And then I woke up. Doctors never thought I’d live and I woke up on day eight. Let’s go.
Bill Gasiamis 5:37
You just needed to prove them wrong.
Jim Moody 5:41
I said I’m gonna live through this man, I’m a fighter. But then after that, I spent 32 days in the hospital, I was very sick. I mean, I wasn’t expected to live, probably maybe not even past that eight days. So I spent 32 days in the hospital. Before I could go home, it was a long time.
Jim Moody 6:00
So as a result of that my brain was crushing itself. And here’s a nice little souvenir that’s a craniotomy. So they took off half my skull, and they took it off and stored it under my skin in my abdomen for few weeks, a month and a half and then put it back on.
Bill Gasiamis 6:22
It’s amazing what they can do. Just amazing. I mean, everything you’ve said is amazing heart valve replacement. You know, ischemic stroke, hemorrhagic stroke. We know what caused the ischemic stroke, but what caused the hemorrhagic stroke? Why did you have a brain bleed?
Jim Moody 6:39
I’m not sure. I mean, anything, you know, during surgery like that, they’re having to adjust the pressures in your your arteries. Right. And so they can get off. And you know, who knows. But I had both. So I had the worst case scenario, I had the, you know, the ischemic stroke started it. And the chain reaction that led to the massive brain bleed, that’s, I think, what did the damage.
Bill Gasiamis 7:06
When you woke up, and they were able to assist you? What deficits did you have?
Jim Moody’s Initial Deficits After The ComaJim Moody 7:12
Yeah, so I was in really bad shape. I mean, when I first came out, I had a lot of physical issues. So I had I was I was losing sight, my right eye. And this is even after I went home, I mean, this is weeks, months down the road, I was losing sight in this eye, first of all, my stroke, my brain bleed, and all the problems were in this front right lobe.
Jim Moody 7:38
All right, everything else was I think, okay. So I was losing vision in this eye, I was losing functionality in my left arm, I had, you know, some major physical things going on. And I did have some other things like that I still deal with. So fortunately for me, I have been able to heal through most of the physical things.
Jim Moody 8:03
I mean, I healed through what I just talked about, I’ve got perfect vision in both eyes, full functionality. So my problem now is not any of the physical stuff. The problem is a lot of the memory stuff. I mean, so I had a lot of loss. I mean, for me, in my in my as a result of all of it.
Jim Moody 8:29
I mean, I suffered through a lot of loss, I lost my memory, my health, my marriage, my friends, my family, my job, I was forced to go on disability. So it was a lot of loss.
Bill Gasiamis 8:42
Your identity?
Jim Moody 8:45
Yeah, everything. I mean, I lost it all.
Bill Gasiamis 8:49
I spoke about that a little while ago, just before we begin the podcasts properly. You told me about the book, you bought a copy of my book, you’re halfway through it, you found a lot of similarities in the way that I went around about things the way that you went about things.
Bill Gasiamis 9:06
And a couple of days ago did the book launch and we spoke about, you know, my journey, the person I was before stroke, the way that stroke impacted us, and the way that I kind of responded after stroke.
Bill Gasiamis 9:22
And one of the things I mentioned was the loss or the losses, and man they just stuck up and quickly and then over it’s overwhelming and you get to that stage where you go well, I don’t know how much longer this was all these losses can go on for how many more can I take you know?
Bill Gasiamis 9:41
But what’s interesting is I feel like I got to rock bottom. I had found a place that was rock bottom when I recognized myself being there. It was like, oh, oh, okay. Well now, there’s out there can’t go further than this. Now there’s only The the way forward, how do you go forward from all the things that you experienced then all the losses?
Jim Moody 10:09
I mean, I gotta say that one of the things I talked about, one of the things I really do believe in is you can’t change the past, so you can’t focus on it. And I learned that really quickly that, you know, I’m not going to change what happened to me what was taken from me, I’m not going to change my healthy lifestyle, my career in medical sales, my income, the relationships I had with some friends, families, co workers, whatever.
Jim Moody 10:39
I’m not going to change that. So why focus on it, you’ve got to make the best possible life you can moving forward. So I mean, one of the things that I was talking about, somebody’s talking to me about, you know, comments on stroke, whatever.
Jim Moody 10:53
This is a comment, a quote that I read a long time ago. And it’s true, and I think you’d agree with this one. If you don’t leave the past in the past, it’ll destroy your future. Instead, look at what is in front of you, not what yesterday took away, right? The best is yet to come.
Jim Moody 11:15
So you have to look at it like, you have to accept, okay. Okay, this is what I lost. And this is what I have left, and I’m going to play the best hand of cards I’ve got with what I’m given. That’s, that’s the way I look at it tonight, when people talk to me about what happened to me, I always try to communicate a positive message.
Jim Moody 11:40
So it’s a message of hope and faith, and optimism and happiness and to other stroke survivors, we’re survivors. An outlook don’t ever give up that you can’t heal through this, you know, I heal through stuff that doctors are still shaking, their heads are going how do you heal through that?
Jim Moody 12:03
You know, it could take a day, a month, a year, 10 years, but people heal through this stuff. And, you know, I still don’t suffer with the physical stuff. But I still have memory issues, facial recognition, navigation, I drive everywhere, everywhere with Google Maps. I’ve lost all navigation.
Jim Moody 12:29
You know, I can go somewhere, drive down to where I grew up. 20 minutes away, have no idea where I am. And without Google Maps, I couldn’t get back home. I mean, that’s I’ve lost all navigation.
Jim Moody 12:41
People understand that. You know, facial recognition is gone. no concept of time. That’s the funny thing. You know, I talk to my kids and like, Oh, I miss you. I haven’t seen you in weeks. And I, Dad, we saw you like, last weekend.
Jim Moody Dealing With ProsopagnosiaIntro 13:00
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like, how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse?
Intro 13:21
Doctors will explain things that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called Seven Questions to ask your doctor about your stroke.
Intro 13:48
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website now, recoveryafterstroke.com and download the guide. It’s free.
Jim Moody 14:08
You gotta have a sense of humor about it.
Bill Gasiamis 14:09
What are you going to do? As long as they understand where you’re coming from and why you said what you said and it doesn’t really matter that you didn’t realize what’s interesting is, you know, facial recognition. So are you able to explain how it doesn’t work? Like what does that even mean? So you see my face now? And then what does that mean for my face? Later, or tomorrow?
Jim Moody 14:36
I’ve seen your face on a number of your podcasts and obviously in your book and all that kind of stuff. So it’s kind of in there now. But that was the mess. You know, that was the mess. When I went back to work I tried to go back to work. I was covering you know, hospital systems and accounts I had about 150 accounts.
Jim Moody 14:56
And I couldn’t get to accounts that were located two miles from house without Google Maps. That’s scary. And then the real thing with facial recognition when I knew it was a real issue was I had the stroke and had all the issues and stuff and tried to get back to work.
Jim Moody 15:13
And I would meet somebody, I would meet somebody on a Monday, oh, it’s nice to meet you. You know, here’s my business card. I’d go back to that account, maybe four or five days later and see him in the hallway and go, Oh, hey, I’ve been wanting to meet you.
Jim Moody 15:25
Let me give you my business card, introduce myself. What? I just met you like Monday. Facial recognition, it’s a real challenge for me. So I can meet somebody, and it just won’t lock it in. It’s hard to lock it in.
Bill Gasiamis 15:44
Okay. And then what about other types of recognition? Do you lack any other types of recognition? Is it tied in with memory, facial recognition? What is it tied in with? How is it that you have some parts of that, but not others?
Jim Moody 16:03
I don’t know. I really don’t know how to. I assume it’s, I assume it’s a short term memory thing, because that’s where I struggle. My struggle is really short term memory. And it’s like, from today, backwards a few days or a week or two really struggle. But my long term memory is pretty well intact. So the short term, I think it falls under that short term category. That’s where I struggle. Yeah, it’s still it’s still a major, major issue.
Bill Gasiamis 16:36
When your relationship ended, was that your marriage that ended?
Jim Moody 16:40
Yeah, that was that was my first marriage, we were married a long time, 27 years, and
Bill Gasiamis 16:48
that in the thick of your recovery, your illness, what phase of the
Jim Moody 16:54
trial, right after all that, and it put, you know, it puts this kind of challenge. It puts a lot of pressure not only on the person that’s going through it, but the spouse, the kids, the friends, family, everybody, and it was, you know, I was always the breadwinner, I was always the guy, you know, all that. And it just kind of fell apart. So that was really rough. was really rough. So I lost a lot. I had a lot of loss so it was 2013.
Jim Moody 17:32
So yeah, you had your troubles 2012 right? Just ahead of me. Yeah. So one year ahead of me, we’re both in the thick of all this mess at the same time. So yeah, you know, a lot of loss. And over the last 11 years, it’s been, you know, I really took a lot of time to see how I could make my life better. How I could cope with this and that and loss and ongoing things, right, like what I’m talking about.
Mental And Emotional Health After A Brain HemorrhageJim Moody 18:01
And that’s where I was like, I found out some good stuff. And I think that healing your mental side is absolutely as important as hearing healing your physical side. Yeah, certainly, I’ve come up with things that have helped me deal with it. And I’m in a great place now. And now, I’ve been trying to pass that along with stroke support groups and videos and stuff like that, if I can help somebody like you are, I mean, it’s a great thing.
Bill Gasiamis 18:34
You mentioned that, just before we started the recording, and we spoke about how you’re presenting some of the things that are in my book, you’re presenting them your support groups, but unbeknownst to my book, you didn’t know that my book was out yet and that I similar philosophy, you still already doing that. So tell me about the couple of things that you think are important in recovery. I agree with the mental health one because I also tied that into emotional health. And I try and I think that is separate, right?
Bill Gasiamis 19:13
So when when I hear when I go to a psychologist, the Greek word psychology, okay, means sit here, which is soul and logic. Okay. psychologic and it means soul law logic. So, when you go and see a psychologist, what I feel like you’re dealing with is not the head based stuff. Perhaps there is an element of dealing with the way you think about things, etc. But what you’re really dealing with is the emotional part.
Bill Gasiamis 19:47
Because your psych you know, your soul, I feel like kind of resides around your chest, your heart, you know, in that area where the emotional space kind of sits. And I was at counseling and very early on, I’m talking about within weeks of my first bleed. And I was in counseling, talking about the emotional impact and the psychological impact, and the mental impact of what it did to me to have a brain hemorrhage and then not be able to work and have a lot of those losses that we spoke about. So how did you tackle that? What did you have to do to deal with your mental health and your emotional health?
Jim Moody 20:42
I mean, I think that I realized pretty quickly, and I see it at some of the stroke support meetings, that there’s people that are really still stuck in this anger phase, you know, there’s people that they go through this and right up front, they’ve got denial, they’ve got anger, depression, all this kind of stuff, you know, and I think that right up front, I realized it, like I said, it’s going to change it. And you have to accept what I call a new normal, this is your new normal, and you got to get okay with it. In your in when you do.
Jim Moody 21:27
And this is really where I’m gonna get place. I mean, you know, when you accept your new normal set of circumstances, the quicker you’ll be in, you’ll find peace, the quicker you’ll be comfortable in your life. And know, okay, that’s the cards I’ve got. And that’s what I’m dealt. And I’m going to make it the best life I can. I’ve got some great support systems, I’ve got some great things I can do. And it’s not all bad. I mean, if there’s any positive to it, I was in as in medical sales, she is running the sprint every day, right holding on for dear life.
Jim Moody 22:11
My life changed, right? It’s not all horrible. I mean, at this point in my life, okay. I’m not doing it anymore, my income went down, certainly. And my health is different. But I’m more peaceful. Now. In my life, I have more of a feeling of appreciation for just quiet time and peace and time with family. Stuff that I didn’t really value before I was just hanging on for dear life with trying to make the income, it was all about the money and the title and all that.
Jim Moody 22:43
And that’s not me. I have a whole new sense of living and giving back. That’s my focus, I focus on me, my physical health, my mental health and trying to give to others if there’s anything that somebody can take away from what I’ve learned over my 11 years, then great, I try to pass it on.
Jim Moody: Controlling The Controllable For Stroke RecoveryBill Gasiamis 23:04
The passing on is really important, too. I find that strange still, but I’m also doing so I observed myself, and I still think it’s strange. That all made a stroke survivor who, who will contact me by email and say, Hey, I’ve had a stroke literally, a month ago, four weeks ago. You know, six months ago, whatever. And I want to share my story, I hope that it helps people.
Bill Gasiamis 23:31
And that’s crazy that I want to share my story, I hope that it helps people is one of the first things that comes into the mind of a lot of stroke survivors. And it did for me, and this is what the podcast is, it’s totally I want to help people. And that’s what it does all the time. And I think it’s a very critical part of stroke becoming the best thing that happened to me because we’ve already you know, we’ve touched on a couple of things already.
Bill Gasiamis 23:58
One of them was relationships and a healing of those and getting your family relationships and all that sorted. We spoke about already helping other people we already spoke about getting your emotional and mental health. There’s already four chapters of my book that we’ve spoken about. And that’s what the other people that I’ve interviewed to make my book possible, that’s what they did, I didn’t invent this, we all defaulted to these things.
Jim Moody 24:31
And just so you know, I just got your book Monday. So I’m only 40 pages into it. So I you know, I haven’t read it all. So I, you know, I just got it so all this stuff that I’m trying to work on and deal with that I have been for quite a while is what I’ve been doing. I have yet to probably read any of that in your book, but I saw the chapters I saw what the chapters are about. Just right in line with kind of my thinking on it.
Bill Gasiamis 25:03
Yeah that’s fine. I mean, it will be familiar to you. And it’s going to be familiar to a lot of stroke survivors, even if they haven’t embarked on the journey yet. Because they’re going to be things that they recognize, you know, when I wrote it, I thought, this book sounds like every other book I’ve read, that’s about personal development, or that’s about, you know, self help, and all that kind of stuff.
Bill Gasiamis 25:30
And I thought, man, it’s just the same old same. And it’s the reason, there’s a reason why it’s the same old same is because it’s the default, it’s where people go instinctively, and know what they need to attend to. And that might take ages to attend to all of those things. But they know to go there, and they do improve their nutrition, they do improve their sleep, they do improve their relationships, and they do help other people, and they do find their purpose.
Bill Gasiamis 25:58
Because, you know, purpose isn’t something that you start, it’s not the, it shouldn’t be the first chapter of the book, where I know, I’m going to work out what my purpose is. And that’s not how you work it out how you work it out, is by taking steps to improve your health, your well being your emotional state, your relationships, other people’s health, and well being mental well being emotional state.
Bill Gasiamis 26:24
And then all of a sudden, what they do is, you look back and you look at how far have I come. And even if the change has been, you know, incremental, and your change has been only five or 10%, further along, physically in some areas, and then it might be when you’re 30%, better in emotional state, it might be, you know, 30 or 40% better in your nutrition. And all those wins, make you feel like you’re in control of your of your recovery, they make you feel like you’re in control of your, of your future and what’s going to happen down the road.
Jim Moody 27:06
I mean, that’s exactly right. I mean, something I’ve said for years, is you go to the doctor and I tell my doctor, all I can do is control my controllables I can’t affect the genes. I was born with my defective heart valve from birth, whatever. But I can control my side, weight, nutrition, I’m huge into nutrition, that’s huge. sleep, exercise, no alcohol, no smoking, no drugs, all that stuff.
Jim Moody 27:39
You know, all you can do is do that. And that will certainly provide you with the best healthy physical self that you can you can do. I read something the other day, this is alarming as reading something on stroke. This this country, I don’t know about Australia, I can’t speak for that this country has obesity problem.
Jim Moody 28:04
And a lot of it goes back to sugar. And if you get diabetes, you have doubled your risk for a stroke, or a second or third or whatever stroke. So this country is just diabetes is just soaring. And people don’t realize that that’s a huge cause of it, you double your risk. Control your controllables.
Bill Gasiamis 28:28
Yeah, you double your risk of heart disease, you increase your risk of cancer. And, and it’s just easy. You know, you just stop consuming sugar, especially that refined stuff that you get in sodas. And it’s in processed food and all that type of stuff, you just get that out of your diet, and things start to improve by themselves immediately. You can lose weight just by cutting out sugar, you can improve your overall health, you can speed up the process of the healing of your brain during recovery from a stroke.
Jim Moody Managing Emotional Issues After A StrokeBill Gasiamis 29:04
It was one of the first things that I stopped doing. I stopped consuming sodas and then led to stopping to consume other things that had sugar in them. And that made a massive difference in reducing the fatigue and the fatigue in my head. And just and just making my body healthier and then providing a better vessel to heal my brain going forward.
Jim Moody 29:32
Yeah, it’s the modern day food supply that’s killing everybody. I mean, yeah, I’ve had a war on sugar for a while a very little sugar eat very clean, intermittent fasting keto diet, I lost 45 pounds and kept it off for about six or seven years. That’s the key to it. It’s not necessarily calories, it’s sugar and it’s preservatives and artificial sweeteners. So I eat very clean and that’s really key.
Bill Gasiamis 30:01
Yep. And it helps you sleep better, it helps you have a better mental state, a better emotional state, especially if you’re previously one of the people that has an emotional scenario and then has to have like some food to help quell the emotional discomfort. If you can stop having alcohol, and food, to quell your emotional discomfort, what’s going to come up is emotional issues that you haven’t dealt with.
Bill Gasiamis 30:33
And that makes it possible for you to be aware of where the emotional issues are, and then to tackle them, and then to go after them in counseling and to resolve them and to put them to bed and to leave them in the past and to move on. And I think that one of the biggest things for me in my recovery was getting rid of the emotional turmoil that I was in, because then it kind of takes the cloud away, that that heavy gray cloud over your head that exists when you have emotional issues that gets in the way of every other thing that you’re doing in your life. And it just makes space and energy to tackle something else.
Jim Moody 31:18
And it’s hard to, you know, we have this physical issue of stroke or brain bleed or major health challenge that comes up in our life. And, you know, we were living normal lives and then bang out of the sky. Right. So we have a physical issue. And then it causes emotional problems. I mean, we were good incomes, you know, providers breadwinners for the family, you know, or all that stuff, and then bang, and then we were challenged with what that resulted. So it will cause probably for everyone trying to deal with that. You know, that’s why I say the mental side is huge to get your head, right.
Bill Gasiamis 32:01
How old were the kids when all this happened to you?
Jim Moody 32:06
So this was what I say 11 years ago. So they were 20. And my kids are about 30, 32. So they’re about 20. Somewhere in there. And yeah, it was tough. I mean, they were basically told I would never live again. They weren’t expecting me to ever live. So you know, again, going back to the emotional thing, I think a lot of people that I see that I talked to and like support meetings or whatever, they’re still in that anger thing, and they’re still looking back at the past.
Jim Moody 32:46
And the problem of it is they define themselves as a stroke victim, still, I mean, they had come through it, they survived. And they might have I mean, there’s all kinds of range of problems, right? Some people have minimal problems, some people really have challenges. So I’m not trying to minimize that. But some people come through that, and they never get out of that they, you know, oh poor me and literally their whole life they define themselves. I’m a stroke victim, over and over. It doesn’t help you can’t you can’t define yourself as a stroke victim, when you know, you can’t, you’ve got to move on, you’ve got to move past it.
Bill Gasiamis 33:34
That’s why I like the word survivor. And that’s why it’s way better than victim. It’s empowering. And it makes you feel like you’ve accomplished something already. Rather than, you know, being beaten down by this thing that happened to you that you’d never asked for.
Jim Moody 33:52
Because I do see it and I think it’s sad. I mean, I do see people that will never get out of that they’re kind of stuck in that. And I do get it. I’m not trying to minimize it. I’ve been there. I’ve just been able to dig my way out of my way out of it to a good place. I mean, happiness is, is your choice, right? It’s everybody’s choice. You can wake up each day, and say the glass is half full or half empty. It’s your choice. And yeah, you may have some struggles and challenges. But you know, it’s how do you want to live the rest of your life? You know, you’ve got to make the best of what you got.
Bill Gasiamis 34:31
I saw this quote, about suffering, you know, and it’s like, it goes something like suffering is optional. I’m just typing it into Google Now, just to remember who said it.
Jim Moody 34:47
I think God for Google,
Bill Gasiamis 34:49
Oh, man. I think the Dalai Lama or somebody you know, is special like that. I don’t know who I’ll just type in who said that. Ah, okay. “Pain is inevitable suffering is optional”. This quote has been attributed to the Dalai Lama, Haruki Murakami, and Kathleen Casey. Now I know who the Dalai Lama is, and I know who the other two people are, but they must be the people that say the most often, or the ones that are the most memorable. But that’s really something I found early on, I don’t know how I stumbled across it was pain is inevitable.
Bill Gasiamis 35:44
Suffering is optional, because I feel like suffering is something that you do in your head. Whereas pain is something that’s happening to the physical body. And, and suffering is also something that you do to the emotion to your emotions, or, or you contribute at the emotional state. I think with the emotional state by not dealing with emotional turmoil and challenges, I think you make suffering worse in your head, I think it impacts the head bar more negatively when you have emotional turmoil.
Bill Gasiamis 36:18
And I think the key to the key to supporting mental health is to deal with the emotional stuff, you know, it’s hard, by the way, it’s not easy to go where it’s emotionally challenging and difficult, it’s really hard. But then there’s two types of hard, right, there’s the heart of, I’m never dealing with it, I’m never going to go there, it’s always going to follow me around my entire life, that’s bloody hard.
Bill Gasiamis 36:43
And then there’s the other heart, which is a good heart, which is I’m going to go there, I’m going to tackle it, we’re going to battle it out. And I’m going to persevere and I’m going to overcome it. And I’m going to have relief. And then I’m going to have you know, it’s like suffering with purpose, I’m going to go there, I’m going to get an outcome, and it’s going to be a positive outcome.
Bill Gasiamis 37:03
And that’s a good thing. Because you get a result for doing the hard work. And you need to do that with support. You can’t do that, necessarily on your own, you might go to a counselor, you might have a good friend, you might have a pastor, or a priest or somebody that you can go to and help you help you overcome that. But it’s really important. It’s one of the most important things.
Jim Moody 37:29
I mean, one of the things I you know, whether it’s whether it’s a physical challenge, as a result of what we went through, or emotional or whatever, I think I think it’s really important to go through and accept, like, what happened to you so that I was Googling some stuff. And I looked up, and there’s five stages of grief. And a lot of people are still stuck in that, you know, like I’m talking about, look, I’m not trying to minimize there’s some true challenge. But you’ve got to get to the final stage of grief, I just put this video out.
Jim Moody 38:10
So I don’t think you’ve seen it, it’s out on YouTube. Anybody wants to see it, I think it’s important. This can be applied to stroke or death in a family member, whatever it’s grief in general. But I think it’s true. So I went through this in this video, it’s about five minutes long, whatever it is. It’s the five stages of grief. And it’s really important to go through those first four to get to that last one because until you get to the last one, you’re not going to be a happy individual. You want to live your challenge to find you.
Jim Moody 38:40
So it’s denial oh my goodness, I can’t believe this happened to me. I’m totally healthy. Anger. A lot of people are stuck in anger. Right? Bargaining, oh my goodness, if I could just get better if I could just heal I’ll do this fill in the blank, whatever it is. Depression. So a lot of people again, they’ve they’ve kind of let this define who they are.
Jim Moody 39:07
They can’t move on. I mean, you might not be a you know, they whatever your income, but don’t don’t get stuck into depression because you’re not a big breadwinner anymore. Something. It’s a different life. It may be a better life, peaceful life, right? And the very last one, if you don’t get to this, you’re not going to you’re not going to be probably happy acceptance. The quicker you can get to acceptance, again, accepting your new normal. If you don’t get to that final acceptance and move on. It’s not good.
Bill Gasiamis 39:45
When you were in hospital, and was it 30 something days before you woke up?
Jim Moody 39:51
32 days in the hospital.
Bill Gasiamis 39:54
And then what was your rehabilitation? Like? What are the things that you had? toggle
Jim Moody 40:03
mainly, mainly it was I hated it was the worst, I was the worst patient in rehab, I hated it, I fought it, whatever. So mainly, it was losing the functionality of my left arm. You know, like I said, when I first woke up, and after that eight or nine days, and then a few a week or two later, whatever it was, you know, I really losing fucking button, my shirt, I couldn’t use much of this left arm and, you know, going and moving something from the left to the right.
Jim Moody 40:36
And, you know, this kind of thing of working with the therapist, to try to see what the mobility function of my arm was. And I mean, it didn’t get better within that hospital. I don’t think within that hospital stay, but then it it healed. I mean, that’s where, you know, amazing that most, most of my physical stuff healed. I mean, I’m pretty athletic today and enjoy. You know, I’m very thankful for that. I was thankful individual on this earth for what I have, at this point, not what I lost. I have, you know, good physical life. You know, I’m still suffering with some of the other stuff, you know, that we talked about. It’s really not everything came back.
Recovery From Vision Loss And Focusing On GratitudeBill Gasiamis 41:23
Yeah. How does the vision of affect you now.
Jim Moody 41:28
My vision is, that’s the thing I was going blind in this right eye because the brain bleed or whatever blew out the affected the optic nerve in the back of this eye I was losing vision in it. I’m like, I don’t have contacts or glasses on now. I mean, my vision is almost 20-20. I wear contacts or glasses for distance way, way out. Other than that. Vision is pretty normal. Yeah, I’m very thankful. I’m still shaking my head, how I healed through some stuff, I should never have healed through.
Bill Gasiamis 42:05
Yeah, it is cool. It’s just really cool to hear it. I mean, you had like the triple like it’s a it’s a heart issue. And ischemic stroke and a hemorrhagic stroke. It’s just, I know why the doctors were so concerned early on, you know.
Jim Moody 42:25
My neurologists that would come in and visit with me and my family’s in the in there. And he would look over at me, and he said, what a shame he’ll never leave here live out of this hospital. And when I followed up with him, after all this, he said, I’ve been a neurologist for 25 years and I’ve never, ever seen anybody in your condition, with the pressures in your skull and what it was doing to your brain live, and come back. So again, don’t ever give up hope. Don’t ever give up hope and health though some of this stuff.
Bill Gasiamis 43:04
I agree, I agree. And the recovery keeps happening decades later. And if you heal your emotional state, that’s a massive part of healing. And that makes you feel so much lighter and better and easier. And then that makes way for other healing. And it just keeps going. Like if you’re, I remember the old me, I used to focus on problems. Look at all my problems. Here’s another problem, there’s a problem.
Bill Gasiamis 43:31
And the more I focused on problems, the more problems I had, right. And then I started focusing on solutions. And then the more I focused on solutions, the more solutions I found, the more problems I solved. And I was able to get everything to bed, so to speak, and to rest and move on and just keep going forward. So that was really, that was really a big shift in the type of person I was before stroke.
Bill Gasiamis 43:58
And after stroke, I noticed a significant and I think I couldn’t I mean, because I really had problems after stroke didn’t I like I had a ton of things that I had to overcome. Imagine just focusing on the negative side of it, and how easily they could just get you down and mess with you and get in the way of every recovery and not having gratitude that I was able to take advantage of the medical system, the technology, the rehabilitation, and all that stuff. Like imagine being the guy who has all that available to him and then focuses on the problems instead of the gifts. But it’s just crazy.
Jim Moody 44:44
I mean, I tell people, everybody that I talked to everybody friends, family, people, I mean, don’t waste a day when you’ve I was dead. I was literally being kept alive for eight days on life support and came back and I get to spend my kids live. both my son and daughter they live 10 minutes away. I get to spend time with them. I have a great life. It’s not perfect, right? But it’s a great life.
Jim Moody 45:10
There’s nobody on earth more grateful and thankful and happy to be back. When you’ve had what I went through, essentially died, lost everything as a result and then came back. cherish every day, man, don’t waste a minute. You know, one of the one of the things I say, again, is if you’re lucky enough to get a second chance in life, don’t waste a minute of it, man. Don’t waste a second cherishing Starcross and some crap off your bucket list. Yeah. You’re selling this on my bucket list. Yeah, I’m gonna come dive the Great Barrier Reef. You have to do that bucket list for a long time.
Bill Gasiamis 45:59
I haven’t done it. But you have to come. I’ve been up to that part of our amazing country. I’ve been near there. But diving is not my thing. And I’ll take your word for it that the Barrier Reef is beautiful when you when you do it.
Jim Moody 46:13
That’s one of the things that I hate about what happened to me if there’s one thing, I was a huge scuba diver. And because of my mechanical heart valve sitting in there, I’m on blood thinner for the rest of my life. And I can’t dive to any kind of a depth. So if that’s the worst of it for me, all right, whatever.
Bill Gasiamis 46:32
You can snorkel it.
Jim Moody 46:34
Oh, yeah, I can snorkel all day long.
Bill Gasiamis 46:39
And even if you don’t dive and you snorkel it, and you’re just in that part of the world, that’s a win, man.
Jim Moody 46:45
I’m gonna get over there one of these days.
Bill Gasiamis 46:47
That’s a win. Get over there. Get over because you’re the American dollar is quite good against the Australian dollar. You guys come down here it’d be cheap.
Jim Moody 47:00
Yeah. It’s dirt cheap.
Jim Moody 47:05
You don’t know how many days you got left? I’ve been dead once.
Bill Gasiamis 47:10
I agree, you don’t know when it’s gonna happen.
Bill Gasiamis 47:11
You don’t know when the next one’s coming.
Dealing With The Relationship Breakdown After The StrokeBill Gasiamis 47:16
How far into your release from hospital did the relationship breakdown? Was it in the very early days? Or was it a few years after you got home? When did that happen?
Jim Moody 47:30
That was like, so that happened in 2013. And then everything fell apart for me in 2015. Yeah, I lost everything.
Bill Gasiamis 47:43
It’s common. I hear a lot about it. I spoke to the literally the previous person who I interviewed, the interview hasn’t gone live yet. This guy he was this guy’s like a cat. Like he’s got nine lives, he’s had already he’s had two it hasn’t gone live yet. But anyone listening to this, by the time you’ve heard this, it will have gone live. So it was the interview before this. The gentleman’s name was Ritesh.
Bill Gasiamis 48:22
So he’s had two kidney transplants, he’s had type one diabetes his whole life, he’s had a brain hemorrhage. And the second kidney transplant and brain hemorrhage all happened around the same time. And for him, the brain hemorrhage happened as a result of getting hit in the head. Because of the I don’t know what they call it. He was sailing.
Jim Moody 48:53
The mass, the boom in the sailboat? Yeah, him across.
Bill Gasiamis 48:57
And whacked him in the head. So in that time, he lost his relationship. He had a hemorrhagic stroke, and he had to have a second kidney transplant. And it was all before the age of 38.
Jim Moody 49:14
Now it’s really funny, almost started laughing. So when you say like a cat Nine Lives, there’s a guy at the gym that I go to, and he knows my story all too well. And I was supposed to have died at birth. I weighed three and a half pounds at birth in 1964. So that’s about a 0% chance of living, right? And then 11 years ago, I had about a zero chance of living again. So when I walk into the gym and see that guy, he goes, Hey, it’s nine lives. That’s what they told me at the gym. As I said, all right. I’ve burned up two of them. I got seven left.
Bill Gasiamis 49:55
Man that’s a lot of lives left.
Jim Moody 49:58
I got seven left. I’ll try to get through them slowly.
Bill Gasiamis 50:03
Yeah, go easy.
Jim Moody 50:07
No diving on 180 feet anymore on on scuba.
Bill Gasiamis 50:16
And thin blood doesn’t make for a good type of condition to dive what does it do? How does diving affect the blood?
Jim Moody 50:28
Well, I can dive probably 30, 40, 50, feet doesn’t do anything but dive into depth going down 100, 150 feet, the pressures at that depth, because my blood has to be thinner than normal blood just to make sure flows through the heart valve perfectly. You know, I monitor it’s simple, I keep it in normal range all the time. But if I don’t have to depth like big depth, it can push it across into the brain because it’s thinner. Just just that’s really for anybody if they have any kind of a blood issue or whatever. Shouldn’t be diving 150, 160 feet, whatever. It’s a deep dive.
Bill Gasiamis 51:10
What’s down there at 150 feet? What’s the point of going down there? I don’t understand it. So tell me.
Jim Moody 51:17
There’s some awesome stuff down there. I’ve been diving all over the Caribbean, Grand Cayman, Cozumel. And I mean all over the place. There’s amazing shipwrecks go over the edge of the wall in Grand Cayman. And I mean, you just can keep going and go on forever and ever and see every type of giant fish and sharks and colors of the rainbow of the corals. I’ve been doing it for a long time. And I haven’t done it in a long time.
Bill Gasiamis 51:48
At 150 feet can you see anything?
Prosopagnosia, Challenges With Navigation, And Time ManagementJim Moody 51:52
I’ll tell you, I’ll tell you the water. I’ve got a picture I took I took a picture at 165 feet, which is deep right in Grand Cayman just over the edge of the wall all the way down. Some corals and some fish, I took a picture down there, and you think you’re in two feet of water in a swimming pool. The water is so clear the sunlight penetrates hundreds of feet. Whereas some of the ocean, it’s churned up. It’s you know, it’s murky. You can’t see two feet in front of you. It depends on the dive site. I mean, there’s some of the clearest waters in the world in the Caribbean, you can see forever. It seems like.
Bill Gasiamis 52:37
Do you feel the actual pressure on your bones on your body? Do you feel the squeeze? How does that work?
Jim Moody 52:45
You do a little if you get down. I used to go down I think the deepest dive I’ve been to is like 175 you get down around 140 150 somewhere down there. You feel it in taken breasts off your regulator. So it’s harder a little harder to you know, to breathe, you don’t really feel you feel a little bit. But the water column think of the water column 178 feet deep pressing in your body is not your it’s pressing in from all angles.
Jim Moody 53:21
So you don’t really feel it. I mean it at 100 feet or something, it’s five or six times the atmospheric pressure at at sea level. So, you know, up here, it’s like 14 pounds per square inch. Like where you’re sitting. The pressure on your body is like, I think it’s 14 pounds per square inch of, of pressure. You don’t feel it right. But you go down to 100. And I’m guessing you get down to like 140 feet. You’re at five times that so now you’re at what 100 I don’t know what it is. I’m 70 6080 pounds of pressure per square inch. Yeah. you know, it’s a significant increase every 33 feet you go, you add another 14 pounds, so you can do the math on that.
Bill Gasiamis 54:18
So what is the hardest thing about stroke for you?
Jim Moody 54:29
I just at this point, I let it roll off my back. I have a sense of humor. There’s not much that really bothers me too much. It is frustrating. Short term memory. You know, Hey, honey, you didn’t take the trash out. Memory loss. You know, you know something that I talked about earlier in the day or the day before? You know that’s kind of frustrating and navigation, I mean, I’ve gotten lost within, you know, a couple of miles or you know, two or three miles from my house.
Jim Moody 55:08
It’s amazing to me. Somewhere where I grew up and have lived nearby for 20 years, I have no idea how to get around. I mean, people don’t understand that all my navigation is gone. I mean, I can get around mainly through the interstates, and I know most of the exits and stuff here. But it’s amazing that it really stripped away navigation. So I have to drive by either Google Maps, or reference points like, Oh, that’s right. I know it’s near that whatever, restaurant.
Bill Gasiamis 55:43
But then do you know how to get to that whatever restaurant? But that’s the thing about it, right? You know, where it’s nearby? Which part of it? Have you lost what part of the navigation?
Jim Moody 55:54
Especially the side roads, like any of the, once I leave the interstate, and I get off, like going to a neighborhood or getting off into the smaller streets, if I don’t have a reference point, or whatever. And you know, somebody that’s with me might go, you don’t know how to get to this. This is your doctor down, you know, 25 miles where I’ve had the same neurology practice or whatever.
Jim Moody 56:23
Since this happened 11 years ago, I’ve been there 100 times. And they’re going, you don’t know how to get to that. And then once I’m getting there, you are having to put that in Google Maps to get home. So that’s kind of frustrating. And that’s embarrassing to, you know, think that, you know, somebody’s asking you. We just came from home to here. And you haven’t put in Google my spec to get home and like, hey, memory loss.
Jim Moody 56:57
Amazing. So that’s what I say. I mean, people that haven’t gone through what we have, they wouldn’t understand they don’t. And that’s what’s good about your book in your podcast is we can relate, I mean, people some of the deficits, you know, that I would have, or whatever with navigation or confusion or whatever, they would go, what I’m going, Yeah, you got taken down you’re not taken out.
Bill Gasiamis 57:21
What about north, south east or west? Do you have that?
Jim Moody 57:25
Yeah I’ve got basic navigation, but.
Bill Gasiamis 57:29
But intricacies of streets and how to navigate, which turn to take and all that type of thing. That’s the part that’s not there.
Jim Moody 57:37
And I’m good with like I said, I know where to turn, oh, I’ve got to turn it the baseball field or whatever. So I kind of have these certain reference points. And I know okay, there’s my turn. And time is another thing, time is really bad. I don’t have a good reference of time.
Bill Gasiamis 57:55
Before we go to time, what about finding your car in a car park at the mall.
Jim Moody 58:02
I was going to mention that. Disaster so when I was a medical rep, I’m parked in the parking decks in the parking lots and stuff, right? I come out, and I’m going to, there’s a six or seven storey parking deck. I have no idea where I parked. I’m walking in the parking deck for 30 minutes trying to figure out where my car is right? And at the mall, or whatever. So okay, I got really smart with that.
Jim Moody 58:30
So with my cell phone, when I go somewhere, I either put in my phone notes, like my car is directly across from the whatever, I take a picture of the number of the spot, or I take a picture of my car with what’s in back of it, oh, there’s a whatever store. So I know where my car is, or I’ll put a note in my phone, level five, facing the hospital, whatever, right? I use, that’s another thing I was gonna say I rely on my cell phone.
Jim Moody 59:03
And that is the one tool that has has enabled me to have a pretty normal life. I use my phone for everything from Google Maps, calendar with recurring alarms and alerts for everything, notes on everything. screenshots on tons of stuff to reference later. I mean, I’m huge on that huge on the cell phone.
Bill Gasiamis 59:33
I remember one time going to the we call them shopping centers. We went to the shopping center. And it’s only a three level car park. And I parked the car. And this was just after I’d started driving again and was kind of at home preparing some ingredients for dinner. Nothing to do for the rest of the day. Any of that stuff didn’t have anything to do before that. So I went to the I went to the local shopping center to pick up some stuff, parked the car. And then I had zero recollection of where the car was.
Bill Gasiamis 1:00:13
And when I say zero, like it just wasn’t, there was nothing there to see if I had never taken the car and left it there. And I remember walking out and going. And this particular Shopping Center has got about four car parks on either side of the building. And I knew which one I was in, at least which which one to go to, but I couldn’t tell you at all where the car was. So I remember walking around the whole thing to find the car. And in the middle of it, my brother Frank says, Hey, where are you ready to join us? I’m just walking around the car park at the shopping center. So I don’t know because of parked my car. But I’ve got no idea where.
Jim Moody 1:01:00
After you’ve done that a couple of times like I have you when you park it, I can park in a sea of a million cars now and go right back to it. Because I’ll make sure I’ll have notes or pictures or something on my phone. That’ll get me back to it. Because that’s a scary thing. All right. I got a very quick, quick story. You ready? This is really frightening. It’s one of the scariest times of my life.
Jim Moody 1:01:23
So right after my stroke, it was even worse. My confusion, my navigation, right after it. Like within a year, probably when I got out of the hospital soon, right. So I went to go meet somebody. And in my confusion, my navigation issues are really worse at night. Because it’s dark. I don’t have any reference points, right? That really makes it worse. I can find my way around during the day because I’ve got reference points. At night I’m out, I don’t know, anything.
Jim Moody 1:01:55
This is a really bad this is just one of the scariest points of my life talking about this. I went downtown Atlanta, real downtown, right. I went downtown. And I was meeting somebody down there in the heart of Atlanta. And I parked my car in a parking deck. Probably five, six storeys, right. It’s raining, it’s dark. I go in have dinner. And I really came out really late for me. It’s raining, it’s dark, I come out of the restaurant.
Jim Moody 1:02:25
And I wasn’t paying attention where I parked it. I just take off from the restaurant walking, walking, walking, it’s raining. It’s probably 10 o’clock at night. And I walked several blocks into a really, really bad part of Atlanta. And I’m dressed up nice, and I’m thinking I’m gonna get killed. Right? I look like a lost puppy. Listen to this, I walked and I said oh, well, I’m walking in every wrong direction. I see. Oh, there’s some lights down there. I walk up there maybe that’s it? Because every parking deck looks the same. There’s a million of them. Right?
Jim Moody 1:03:02
And I’m really lost at this point. I walked up with these lights. And these two guys come out at me with rifles, automatic weapons. What are you doing? You stop right there. We take you down right now. I walked up on the Federal Reserve building in downtown Atlanta, one of the most guarded buildings. I walked up on the guard tower. They said I don’t know who you are, what you’re doing.
Jim Moody 1:03:29
But if you don’t take a step back right now. It’s gonna get ugly. And they’ve literally got the rifles out. There’s two guards in front of me. I said, I am lost. I had no idea where I am. I parked in a parking deck. I’m literally walking around lost. I have no idea. When you have the fear for 40 minutes thinking you’re gonna get killed. And then you walk up to the Federal Reserve building one of the most guarded buildings in Atlanta.
Jim Moody 1:03:34
And then it’s a good guy is gonna take you out.
Jim Moody 1:03:53
So they called the police and they helped me I mean, they called them to help me find the car and it was like, three blocks. three blocks away. That’s really confusion when it comes to there’s a million parking decks. It’s raining, it’s dark, right.
Bill Gasiamis 1:04:22
You’re disoriented and people look at you and they think well this guy looks normal. You can’t see anything wrong with him.
Jim Moody 1:04:30
There’s my scary story. So since that point, you bet you bet. I’ll know where I parked.
Bill Gasiamis 1:04:42
What’s a few things that stroke has taught you?
Jim Moody 1:04:44
I think it’s just taught me to cherish some of the smaller things in life. I mean, I cherish time. I cherish Simple things, walking on the beach time with friends and family vacation. I don’t I’m not a materialistic guy. I am the least materialistic guy there is it doesn’t bring me happiness, it’s time and experiences, you know, mean when you’ve lost everything and not expected to live when you come back, you just want to, you just want to do stuff. You know, it’s taught me to cherish every day. And that’s the most important thing.
Stroke Recovery, Self-criticism, And Patience With OthersBill Gasiamis 1:05:32
Perfect. What would you say to somebody who’s listening? Who’s a stroke survivor? Who is coming across this, they might be going through the tough part of it? What do you say to somebody who’s listening and needs some support advice?
Jim Moody 1:05:53
I would say. And I’m thinking about putting a video out on this, because I think this is important. Because I’m even like this sometimes don’t be so critical of yourself, right? You had this happen to you, you’re doing the best you can with the resources and support that you can don’t be so critical. You’re not perfect yet, right? You’re not? You’re not where you’d want to be.
Jim Moody 1:06:23
But you’re a work in progress, right? Don’t be so critical of yourself. And then I would say don’t be so critical. of other people, like we kind of talked about already. Your stressful situation is stressful to you. But it also has put stress on the marriage, the kids, the family, the co-workers all of it. So you can’t always think and sometimes it’s easy for us to think, oh, they think I’m stupid.
Jim Moody 1:06:52
Oh, they whatever, right, and you get short with them. Right? So I would say Have patience with yourself and have patience with others. That, you know, they don’t get, you know, understand they’re, they’re going through this right there with you. It doesn’t, it doesn’t help you or them to get annoyed and frustrated with them when they don’t understand. They haven’t been through it. They don’t understand.
Bill Gasiamis 1:07:18
We don’t want them to go through it. Because it’s the only way they’re going to understand. Jim, Where would people go and find your YouTube channel? What’s it called? What should they expect to find the I know, it’s just something that you’ve just started. So it’d be good if people come across and supported you. Tell me a little bit about that.
Jim Moody 1:07:40
So I mean, a lot of the stuff that we kind of talked today about, I’ve got four videos out there. So I put three out. And I just put a fourth one out there. And you just if you just go to YouTube, and you just search and just put in Jim Moody Stroke, all four will come up. And like I said, I’m about to put another two or three out there in the next month. And I think they’re helpful.
Jim Moody 1:08:06
I mean, I think this is kind of some of the things that I talked about. Doing a stroke presentation, I’m doing one next week at a large hospital in Atlanta, and I’m doing one in a month at another large hospital. So I’m trying to, and those are the things that are in the videos. So I kind of took about a three minute presentation that I would get up and do in front of the group. And I chopped up four parts of it. So that’s what the four videos are. So I think they’re helpful. I mean, did you get a chance to see them?
Bill Gasiamis 1:08:39
I have I’ve seen them, they are helpful. They’re always helpful. The reason they’re helpful is because they’re another perspective on things regarding the stuff we’re all going through. And that’s what’s really good to hear everyone’s perspective. And that’s why, ultimately, with the book, I was very comfortable after I wrote the book, because I realized that yeah, it all seems similar people default to all the same things. You’re doing similar things, but it’s my perspective.
Bill Gasiamis 1:09:10
And that’s what your videos are, the more content that we have out there for stroke survivors, the better because when you and I were going through this at the very beginning, there wasn’t a lot of stuff on stroke out there. And it was hard to come by. And there wasn’t a lot of different perspectives, different thoughts, different views. And that’s really why I wrote the book, it was the book that I needed when I was going through stroke, right. And that’s the videos, all my videos, all the things that I needed. So it is helpful.
Jim Moody 1:09:43
And it’s kind of frustrating to me because I film the four videos and I don’t know where to put them actually, I don’t know where to even send them to be helpful. So I filmed the four videos and they’ve had like very few views on them. And I’m like, I just don’t know where to send them to put them out. So I think that the Brain Injury Association of Georgia just kind of shared them shared the links to them. So maybe some people will see them. I just don’t know where to go to put them out to let them get seen. So if you had, if you want to share them?
Bill Gasiamis 1:10:18
Yeah, well, people will go and find them now. But that’s the best place to share them.
Jim Moody 1:10:21
But they don’t know to go to find them, they don’t even know that there’s any out there.
Bill Gasiamis 1:10:26
YouTube is full of them now. So it’s okay. But the reason why yours haven’t had a lot of use is because when, when, and this is something that I try and do is encourage stroke survivors to do any version of this, that they can, whether it’s on a podcast or whatever, at the beginning, you get very little traction, because the algorithm, and YouTube doesn’t really know what to do with your videos and who to put them out to.
Bill Gasiamis 1:10:52
And they have to capture a certain amount of attention before they kind of go off. And I’ve got to say that my YouTube channel has been around since 2017. And only now is it really started to take off, like, only now is it just got above 2000 subscribers, like that is a long time to have a YouTube channel without any subscribers. And YouTube just seems to have now figured out what to do with all my videos.
Jim Moody 1:11:21
I’ve seen a lot of your videos I you know, watched a bunch of them before I’ve prepared for this.
Bill Gasiamis 1:11:27
But we’re not getting any traction at all Jim.
Jim Moody 1:11:30
I mean, unless somebody is going out there searching like, I don’t know, going out on YouTube and hitting in the search, they wouldn’t even know that any of my stuff’s out there. But if I could put it out under stroke, support groups, podcasts, whatever, YouTube, you know, if I could put it out there to where people within that population, you can know that there’s a resource out there. I mean, right now, and you just throw it out on YouTube, and nobody’s searching for that. I don’t think on YouTube, I don’t know.
Bill Gasiamis 1:11:31
They are 100% they are. But what’s good about YouTube is that it’s, it is a place to catalog it and store it there. So you can easily send people, they’re somebody who you come across in your presentation, you can easily say, like you just said to my audience, you know, go to just search Jim Moody stroke, and they’ll come up, and that’s the perfect place to have them because it’s central and everyone can go there. So you’re doing it the right way. Just keep doing it.
Bill Gasiamis 1:12:27
And I think you know what, realistically, what you? I think why you’re doing it is it’s less about? It seems like it’s there’s this two pronged approach is this about the fact that they’re not getting views, although it’s clearly a beneficial thing, but other people if they get views, but it’s more of a, getting it out there creating the content and making it available, and cataloging it in this place. So that it’s accessible to anyone for free, who might want to watch it. And you’re just starting out. So don’t, don’t let it kind of don’t look at the numbers. Just keep doing what you’re doing. And then and then it’ll grow.
Jim Moody 1:13:09
I’ve gotten to a point where I just like, there’s nobody watching them. So why bother to film anymore? It’s like, nobody sees them.
Bill Gasiamis 1:13:16
I didn’t, if I had that approach, if I had that attitude, then this podcast would never have happened. The curves starts with being flat for a long, long, long time. And then eventually it starts to go up. But it’s flat for a long time. And then, and then it changes. And for me, I’m at 300 episodes. And like I said, it’s only just started to, you know, to go go north. But before that, it was a struggle.
Bill Gasiamis 1:13:50
But nonetheless, the few people that were finding it, were starting to share it, the few people that were finding it, were appreciating it, were reaching out and saying thank you leaving comments telling me how impactful it was. And you and I, back then we didn’t have any of that. So now that amount of stuff has proliferated. And that’s really good. And we need more, so you gotta keep doing it. Because you’ll get better at it. And then look at the views get about the views.
Jim Moody 1:14:26
Well, I don’t really care. I don’t care that’s one view or million if it’s helpful, great. If it’s not, I’m not going to continue doing it. So kind of my view on it. I’m doing it to waste my time, if it’s helpful, great. You know, whatever. If it’s not, it’s not.
Bill Gasiamis 1:14:43
It is helpful, but that’s the thing. It’s like you’re judging whether it’s helpful based on how many times YouTube has put that in front of other people. And that’s not the judge of being helpful. It’s helpful to stroke survivors of all shapes and sizes from everywhere around the planet.
Bill Gasiamis 1:15:01
The thing about it is Google are the ones who and YouTube are the ones who determine whether or not your videos go to the audiences. And then that’s where we kind of get a little bit disheartened, because we think that nobody wants to see it. But it’s actually Google is not sending it out. And, then that changes later, somehow. I don’t know exactly how but it does.
Jim Moody 1:15:29
I don’t know how the Google thing works with that relationship. But I just know, I mean, the only, like I said, the only people that have really viewed it was some of the Brain Injury Association of Georgia, they put it out there. So that’s, that’s the only place that you know, to get started.
Bill Gasiamis 1:15:46
That’s a great start. I really appreciate you reaching out, getting a copy of the book, sharing your story, doing the stuff that you’re doing. Thank you so much for being on the podcast.
Jim Moody 1:15:57
It’s great. It’s good to be here. And I think you and I share the same desire to just try to give back and that’s what I’m trying to do is just try to give back. I’ve got so much now in my life, and there’s a feeling of gratefulness and I can help one person out there. Great, you know.
Jim Moody 1:16:14
Thanks, Jim.
Bill Gasiamis 1:16:15
Well, thanks again for joining us on today’s episode. I hope you guys enjoyed Jim’s story. If you’re interested in my book about recovery, you can grab a copy on Amazon, or by visiting recoveryafterstroke.com/book. To learn more about my guests, including links to their social media, and to download a full transcript of the entire interview, head to recoveryafterstroke.com/episodes.
Bill Gasiamis 1:16:40
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Bill Gasiamis 1:17:06
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Bill Gasiamis 1:17:30
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Intro 1:17:56
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Intro 1:18:26
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The post Jim Moody’s Double Stroke Miracle and Prosopagnosia (Face Blindness): A Journey of Survival and Resilience appeared first on Recovery After Stroke.
Ritesh Nandwani’s Incredible Stroke Survivor Story: Overcoming Stroke, Kidney Transplants, and Heartbreak.
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Highlights:
00:00 Introduction
01:34 The Beginning Of A Stroke Recovery Story
12:30 Dealing With Language Barriers, And Medical Procedures
19:09 Initial Treatment In A Public Hospital
25:40 TMS therapy for brain injury
33:03 Dealing With Kidney Failure, Dialysis, And Depression
40:19 COVID-19 Impact, And Support From Unexpected Friends
52:37 Dealing With Divorce And Finding Emotional Support
1:01:39 The Hardest Thing About The Stroke
1:04:35 Lessons From The Stroke
Transcript:
Introduction – Ritesh Nandwani
Bill Gasiamis 0:00
Hello, everyone. Welcome back to another episode of the recovery after stroke podcast. This is episode 306. And my guest today is Ritesh Nandwani, who by the age of 38, had experienced two kidney transplants, a hemorrhagic stroke and the breakdown of his marriage.
Bill Gasiamis 0:18
In this compelling episode Ritesh shares his extraordinary journey of resilience and recovery, detailing the harrowing incident that led to his stroke. His challenges with the medical care in Hong Kong, the emotional toll of his health struggles, and how he found strength and hope through community support, and a positive outlook on life.
Bill Gasiamis 0:40
Now, just before we dive into the interview, I’d like to take a moment to mention my book The Unexpected Way That A Stroke Became The Best Thing That Happened 10 tools for recovery and personal transformation. It’s a collection of inspiring stories from 10 stroke survivors, showcasing their incredible journey from adversity to personal growth, covering everything from nutrition, and exercise, to handling the emotional challenges.
Bill Gasiamis 0:41
This book is a beacon of hope for those on the road to recovery. And for more information, you can check out recoveryafterstroke.com/book or simply search for my name Bill Gasiamis on Amazon. And now it’s on with the show, retention and winning welcome to the podcast.
Ritesh Nandwani 1:27
Thank you. Bill, how are you?
Bill Gasiamis 1:29
I’m very well thank you for being here. I really appreciate it. Tell me a little bit about what happened to you.
The Beginning Of A Stroke Recovery StoryRitesh Nandwani 1:34
Well, I had my stroke back in 2019. So five years ago, I was actually sailing with my girlfriend at the time we were sailing. And then on the last day of sailing after five days of sailing. I got hit in the head with the beam of the sailboat. So then that caused a hemorrhagic stroke.
Ritesh Nandwani 2:09
So at first, you know, just a lot of pain until eventually. It was actually two days later that I lost the full function my right side. I remember I was getting up getting ready for work. And I sat down and suddenly, I lost sensations right side and I started slurring. And then I woke up my girlfriend, then she rushed me to hospital.
Ritesh Nandwani 2:42
So that was at first the diagnosis of ischemic stroke. But then, later, a couple of days later, when we got another doctor’s opinion, he said, No, it’s a hemorrhagic stroke, and we need to treat it differently. So that’s essentially what happened to me. But yeah, and I guess, the fact that I’m also a type one diabetic since I was a kid. So that made it a little more challenging. And yeah, so that’s kind of what happened.
Bill Gasiamis 3:16
Were you an experienced sailor?
Ritesh Nandwani 3:19
No. So we’re actually learning. We’re more like learning. I knew a little bit my girlfriend at that time. So she wanted to learn as well. So okay, we did training together for five days. And on the last day, that’s when I got hit.
Bill Gasiamis 3:36
So that bar which holds the sales. I think I’ve seen it on TV, the wind changes, they change the position of the sale. And it swings across really violently.
Ritesh Nandwani 3:47
Yeah, yes, that’s the one and unfortunately, we already actually at the dock already so we were packing up, but unfortunately, no one had tied it up. So we had already gone there. You know, as we were getting out, I had already stood up. And no one had died it up.
Ritesh Nandwani 4:09
And boom, it hit me. And I was still wearing a helmet, though. But it was still pretty bad. And I guess the weather wasn’t good those days. But you know, we’re learning so we said this could be a good challenge to learn. And we had trainers with us and everything.
Bill Gasiamis 4:29
So because it wasn’t tied, was it a gust of wind that picked up a sail and pushed it over?
Ritesh Nandwani 4:36
Yeah, yeah.
Bill Gasiamis 4:38
So man, like you’re standing there, you’re wearing a helmet and it hits you on the head. I mean, for it to cause a hemorrhagic stroke. That would have been a dramatically violent and hard hit. It must have caught you fall on instead of like, swishing over.
Ritesh Nandwani 4:56
Oh yeah it smacked me, I got hit and knocked out. I was unconscious the whole time. But yeah, it was enough force for me to lose balance and fall.
Bill Gasiamis 5:10
When you got up, massive headache I imagine, where you disoriented? How were you experiencing that?
Ritesh Nandwani 5:17
When I got up yeah, I was a little bit disoriented, but after like maybe a couple of minutes I felt okay. Other than pain that was it. And I didn’t think it was anything serious at the time. So like, I was still okay, still able to talk move around. And then we eventually went back to the sailboat after that, so yeah, I had pain and that was it. That was there for like, maybe two days two to three until the day that actually I just lost sensation.
Bill Gasiamis 5:58
Yeah. You lost sensation on your right side or your left?
Ritesh Nandwani 6:02
Yes. My right side. Yeah.
Bill Gasiamis 6:04
On your right side. And then the last sensation and what did it feel like? What was it like to lose sensation? What were you thinking?
Ritesh Nandwani 6:15
There are so many things going through my head that I didn’t know, stroke didn’t come to mind. I thought something had happened. Something worse happened and I thought this was it. You know, I literally always tell my girlfriend, all the bank accounts.
Ritesh Nandwani 6:36
What to do, call my parents, everything and, you know, she was God bless her. She was sitting beside me. She was calling the ambulance on the other side, just taking over everything. And just say, okay, you know what, we’ll just take care of this, whatever it is, we’ll deal with it.
Ritesh Nandwani 6:54
But you know, she were there so that things are running through my head. I thought this was it. Yeah, I thought I’m done for. Yeah, because like, this was not my first accident, I’ve had a couple of bad accidents as well before, like one shattered my femur. Another time where I had eaten something wrong when I was traveling, it caused me to go into septic shock. And then they had to induce a coma for a day. So had these incidents before, but this is probably where I was scared the most.
Bill Gasiamis 7:39
At that time, did you connect it at all, to the hit in the head that you received a few days earlier?
Ritesh Nandwani 7:47
At the beginning, no. It was only later that because at first when we got to the hospital, they didn’t do an MRI. They did a CAT scan, not an MRI. And then they said, Oh, it’s a stroke. So that was it, then another cousin of mine whose mom had a stroke as well. So he just said I go visit a private doctor. The system is a little bit different first thing you do is to use public hospital. And then you have an option for your own doctor, after a few days.
Ritesh Nandwani 8:27
So that’s what we opted to do. Because things are we’re not clear on what was going on. And my mom had flew in Hong Kong and they were like, Okay, what is really going on, and no one’s giving a proper explanation. So that’s when we decided to get a second opinion. We went to a neurologist, and then he did a full body MRI checking everything then he said, okay, it’s a hemorrhagic stroke.
Ritesh Nandwani 8:57
And we have to do a different way of dealing with things as compared to ischemic stroke. So then that’s when they started, going through that process. And then he said is actually quite common. A lot of times they do misdiagnosed, ischemic instead of hemorrhagic and the treatment process would be different.
Ritesh Nandwani 9:21
But he said that if you don’t do a proper MRI, you’re not figured out. So, but that there is like let’s just do a full body MRI, check everything, if anything as if you do have any preexisting conditions that could affect it. And I told them I’m a type one diabetic. And then I’ve also had a kidney transplant before that, like nearly a decade ago before that. So they get these factors will affect it like but everything was stable. Sugar was stable at the time blood pressure, stable at the time, everything else was stable.
Bill Gasiamis 9:52
And then it kind of occurred to you that might be the hit on the head had some to do with it?
Ritesh Nandwani 10:03
Yes. Because he actually was a private doctor and detected that it seems like I had some trauma to the head. During the MRI so he asked me has anything happened recently, then I told him this is what happened because that’s mostly, would have caused it. It was actually pretty large was four centimeters in diameter. She goes, this could have caused that and that’s what we went with.
Intro 10:32
Yeah, if you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like, how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, doctors will explain things. But obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 10:57
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called Seven Questions to ask your doctor about your stroke.
Intro 11:17
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery, head to the website now, recoveryafterstroke.com and download the guide. It’s free.
Bill Gasiamis 11:36
Well, now, we don’t need to discuss this if the question is not appropriate. But I’m gonna ask the question you can tell me if it is or isn’t. Is there some sort of compensation that you’re receiving for the injury that you received on that particular boat?
Ritesh Nandwani 11:52
No, I didn’t get any compensation. As for the training, like I had to sign a waiver for anything. And then when I was with the hospital, I was told that would be very challenging since I had preexisting conditions. And like, you know, we were like, it’s happened already. So going after, again, fighting with the hospital going through legal process. It just for us, it was like, okay, it’s done. Now let’s deal with it, rather than going through even more stress.
Ritesh Nandwani Dealing With Language Barriers, And Medical ProceduresBill Gasiamis 12:30
Yeah. Okay, I get it. I totally get it. I was just curious. Because often people have a brain hemorrhage, and it impacts their, livelihood, it impacts everything, right. So it’s a very challenging time for all sorts of reasons. So that’s why I was wondering, but that’s okay. I totally get where you’re coming from. So he’s noticed the trauma, he’s connected the trauma to potentially the incident, and now they’ve got a way forward. You mentioned a little bit earlier that you’ve had a kidney transplant, is that because of the type one diabetes?
Ritesh Nandwani 13:14
I was actually misdiagnosed before. But I was given the wrong medication a couple of years ago, a year before the transplant and before my kidneys failed. So yeah, in the fact that that was type one diabetic didn’t help. So it made things worse, and my kidneys failed.
Ritesh Nandwani 13:38
And like if you had seen my the progress of the deterioration, I mean, of the kidneys. There was less than six months from having a normal creatine level to eight times normal creatine level. It was just three months and it happened so fast that when they bring in dialysis, they’re like, Yeah, we need to do a transplant as fast as we can. It was that abrupt.
Ritesh Nandwani 14:05
You said earlier that the scariest time was when you lost the feeling on your right side yeah. The kidney transplant didn’t make you feel concerned or worried about things. The kidney transplant did. It did but the thing is like, you know, when you’re going through a kidney transplant, I had a friend who had gone through kidney transplant. So you pretty much get back to normal life after surgery.
Ritesh Nandwani 14:37
So it’s just a matter of waiting till you get a donor and going through the whole process. Yes, it’s a tedious and painful process, especially dialysis. It just takes the life out of you. And it kind of stall everything for you. But as you’ve done your transplant, things do pretty much get back to normal.
Ritesh Nandwani 14:56
So that okay, and I was still able to talk, able to move to do everything, I was still okay with that. But with the stroke, it was something very different, you know, where it’s, it’s a feeling that you don’t know. And when at that point, whenever when I was going to the hospital and everything, going to the ambulance and all that, there were so many unknowns.
Ritesh Nandwani 15:28
That was like, okay, and I guess, because I was conscious the whole time as well, that made it even more scary.
Bill Gasiamis 15:38
At least with a dialysis and the kidney transplant, you know, the procedure, you do this for a little while when a kidney has come available, you go through a process that happens, and then this happens, and then you move on, and you’ve got proof of a successful surgery previously, you know what that looks like, you know, what the person’s life is like, and it’s more, like, I’m just gonna go through the motions here. And when I get to the other side, this is likely the result. Whereas you wake up one morning and you can’t feel your right side, and it’s what the heck is going on?
Ritesh Nandwani 16:15
So yeah, the fear of the unknown if, for lack of a better term. Yeah, I was in Hong Kong. In Hong Kong, as you’re going to the emergency they don’t speak English. And I didn’t know Cantonese. So that was another thing. Like, okay, I didn’t know what’s going on. And because everyone was in a rush to get on with it, no one’s actually telling you, you know, you’re going through a stroke. This is happening. No one’s telling you.
Ritesh Nandwani 16:48
So you’re just seeing people rushing around you and all the noise and everything. And the hospital results kind of overwhelmed a lot of people so there’s so many people and yeah, it was too much at once, I guess.
Bill Gasiamis 17:05
Makes sense. Were you in Hong Kong on a vacation? On holidays?
Ritesh Nandwani 17:11
I was living there. I was living and working there at that time.
Bill Gasiamis 17:17
And even though Hong Kong is known for English, the English language it’s not commonly spoken in medical?
Ritesh Nandwani 17:25
No. The local doctors and nurses still prefer talking in Cantonese. Yeah, you know, it’s still their mother tongue and English was more common in the private hospitals. Yeah, in the public hospitals. Yeah, there were some people that knew how to speak English. But I guess when going through all that stress at the same time, mostly were just talking in Cantonese.
Bill Gasiamis 18:00
I can imagine what that’d be like I was frustrated in a English-speaking Hospital in in Melbourne, Australia here when they wouldn’t speak to me about what was going on. And that would keep me in the loop of you know, my condition and the situation that I was in and I was getting really frustrated and they were talking to me in English every so often but I still felt a little you know, this is not right.
Bill Gasiamis 18:25
I feel like I need more information you need to be telling me what’s going on I need to know one way or another what’s happening. So I can instead of using my head to overthink things, I can just prepare for things and I can sort of work out you know what my role is going to be in all of this I don’t want to be passive and just sit in there. And having you guys make all the decisions without consulting me.
Bill Gasiamis 18:54
So I can imagine you’re in Hong Kong. speaking Cantonese you don’t speak Cantonese. And you’re wondering how bad is it? Is it worse than it seems is a better than it seems?
Ritesh Nandwani’s Initial Treatment In A Public Hospital
Ritesh Nandwani 19:09
And then even asked about you know, when they started so the first week I was in the main hospital, secondary get transferred to another place and where they transferred me I was pretty much the youngest guy there no one else was my age. Everyone else was in their 60s and 70s.
Ritesh Nandwani 19:31
And I remember there were three of us in my room. And I was the only one who could actually still have functional my left side while the other guy like you know, he was eating through a feeding tube. Another one was pretty much catatonic as well.
Ritesh Nandwani 19:53
So kind of felt different and because it was so low in the public health care system you weren’t allowed visitors, you’re only allowed for two hours a day and that was it. So it was quite challenging. And my girlfriend that time she would sneak in the hospital just to stay in the room with me. And then it came to a point later that they agreed, okay, someone can stay with you.
Bill Gasiamis 20:22
Yeah. I remembered when I went to hospital. I remember when I went to hospital, the first time I was put in, because there was no beds. I was put in the spinal ward. And everyone, there had a spinal cord injury. And they weren’t moving any part of their body.
Bill Gasiamis 20:42
And it was really tough to be in there. Because I didn’t know what extent my injury was again, I had a brain hemorrhage, but I didn’t know. What does it even mean, I didn’t know what a brain hemorrhage was before that. And now I’m in a room with people who had spinal injuries, and it was really tough to try to come to terms with what I’m seeing, and why I’m here.
Bill Gasiamis 21:08
A little while later, they moved me into another ward where there was other people who’ve had strokes. And that settled down my nerves a little bit made it a little bit better. It was tough to witness those guys in the worst part of their injury, which just after it’s happened, you know? And they were really struggling. So I know what you mean. How long did you spend in hospital? And how did they treat your injury?
Ritesh Nandwani 21:39
So I was in both hospitals in two weeks. It wasn’t the advice of the private doctor that I leave the public hospital. So we took his advice left public hospital, then he was looking after me after that. So at that time, we had stayed in a service apartment at first because my old place was not big enough to even accommodate a wheelchair in Hong Kong, ours were quite small. So it was a little bit more challenging. And we decided to get a service apartment for at least a month until we found the place that was more accessible.
Bill Gasiamis 22:27
So the doctor would come to your place where you’re staying?
Ritesh Nandwani 22:31
Yeah, so my service apartment was maybe just a block away. For less than even a block. I was down the road from where my doctor’s clinic was. So my mom was and my girlfriend at the time, they would take me to the hospital, usually every day.
Bill Gasiamis 22:54
But was that kind of like just where you were staying? So you can be nearby? And then you would go into the clinic and get treated? How did they treat it? What did they do to resolve the blood vessel that had leaked?
Ritesh Nandwani 23:06
Well, they didn’t operate on it or do anything. So for that they really recorded me more to rest and then, you know, the first month, they asked me to not do any just rest as much as I can. And to you know, avoid stress. Then it was only after the first month that I started getting it therapist and tried to at least start moving it.
Bill Gasiamis 23:35
Okay, So you’re they’ve noticed that your right side is impacted negatively, right?
Ritesh Nandwani 23:51
Yes.
Bill Gasiamis 23:51
And was there any protocol put in place? Was there any thing that they were going to do to help support you overcome that condition or to rehabilitate that?
Ritesh Nandwani 24:02
In the public hospital, at that point, they didn’t tell me much. They really didn’t say you know, in the morning Sunday, they wanted to do therapy right away. And then that’s actually what happened. That was the main reason why the private doctor got me out. He didn’t want me to do anything at first.
Ritesh Nandwani 24:25
He said he wanted me to rest at least for the first month. So they gave me some brain vitamins and some medication to help me with that. And they obviously went through, you know, all my medication and adjusted my insulin, gave me some blood pressure medication at first. So they adjusted all that in that span of time, and fortunately I didn’t have to do any surgery or anything like that
Bill Gasiamis 24:52
So perhaps he was worried that putting you on the pressure to exert yourself might cause a bigger leak. That makes ense. And then after about a month or so, then what happened? How did you go through the rest of the process?
Ritesh Nandwani 25:11
So then when I went to clinic that day, the main doctor because he was actually neurosurgeon, the one I had. So he gave me to his partner was not a neurologist, who would essentially be taking care of my therapy, since she’s doing something with a physical therapist there. And then she was talking with the process of what we can do together with my family.
TMS therapy for brain injuryRitesh Nandwani 25:40
You know, like, what exercises or whatever to do, and they kept physical therapists for me that I had to go three times a week with, and then even did, I forgot what therapy it was, but they use magnetic stimulation on the brain. I think it was called MTS or something like that. So it was relatively new in Hong Kong at the time, I think I was the first patient to go through therapy.
Ritesh Nandwani 26:09
But this works well in Germany, and they felt it did cause independence a really couldn’t move my hand or anything. In fact, even talking was very difficult to me time. After like, maybe two rounds of the MTS, I started getting function back from my hand, I still don’t have full function, but I could start moving my fingers a little bit. And sensation was normalizing. Then I could start talking as well, and then we’re just kept doing therapy after that.
Bill Gasiamis 26:46
So was that a magnetic brain therapy?
Ritesh Nandwani 26:50
It was some form of stimulation.
Bill Gasiamis 26:55
Was it TMS Transcranial Magnetic Stimulation?
Ritesh Nandwani 26:58
That one yes. That’s the one. TMS.
Bill Gasiamis 27:02
As soon as I put it up, it comes up. I’ve never heard of it, I’m gonna look into it. Okay, that’s really interesting. Because there’s a couple of things that people can do that really do help heal the brain, one of them is hyperbaric oxygen therapy that really seems to support people’s recovery in heals parts of the brain that previously were not able to be healed. So you notice such a big result that quickly, like literally after a couple of sessions.
Ritesh Nandwani 27:32
I was getting three sessions a week. So probably the third week. Yeah. The third week, that’s an I noticed more improvement. That thing is the way that therapy was done. Like they would do the TMS and within half an hour, I would do physical therapy. So there’s adults when it’s most effective, initially right after half an hour. So it wasn’t the same clinic that like the clinic was on the 18th floor in the 17th. floor was a physical therapy, surgical one for down against art therapy right away.
Bill Gasiamis 28:08
So how many more weeks of therapy did you do?
Ritesh Nandwani 28:15
Well, I’m still doing therapy. Now. I still continue, I haven’t stopped.
Bill Gasiamis 28:19
What TMS?
Ritesh Nandwani 28:21
TMS So I did two rounds, stopped, then again after a couple of months started again. But this time, it’s three times a week, we’re doing two sessions a week. So pretty much did TMS about four or five rounds. But it wasn’t continuous. The first few rounds are continuous, then stop for a while then start again, then stopped and started again. Until it was like once a week.
Bill Gasiamis 28:50
And then you notice the improvements decreasing and not getting as obvious as they did at the beginning.
Ritesh Nandwani 28:57
It was still a lot of improvement because it’s like actually after the first year, I was already walking with a cane. I even went to Paris for a month because my girlfriend at that time we were already engaged. So she was my fiance, went to France and her mom is a doctor in Paris.
Ritesh Nandwani 29:24
Actually in Champaign, so her mom actually flew down when I had a stroke. She came visit me he stayed with us for two days. Then went back and then we went to Paris she was like okay, there’s very good facility center near where you stay, I always actually there for a month. And I was walking without any aid at the center.
Ritesh Nandwani 29:51
And unfortunately, this is March 2020, February, March 2020. And then, since she was very high up in the medical board in Champaign, she was like, you know, we might have a lockdown next two, three days. And and I suggest you guys fly back to Hong Kong. So within the next 12 hours, we left Paris came back to Hong Kong. And sure enough, a lockdown happened.
Ritesh Nandwani 30:21
In Hong Kong at in the beginning, you were still doing continuing with therapy, then when things got pretty bad in Hong Kong, all the therapy centers got shut down. They’re all converted into COVID facilities. And this is where I really had a challenge. Like I had to stop therapy completely. And even before I was doing water therapy, aqua therapy, I had to stop that because even the the pool in our building was close. And if ever I would have to any therapy, it will be done via zoom.
Ritesh Nandwani 30:55
Which became a challenge. I guess it’s not the same and challenge at that point was my therapist. I think he kind of took advantage of situation. He was doing Zoom and he having four patients at once. Doing it via video is quite challenging and then you doing it with four patients at once. It was extremely challenging.
Ritesh Nandwani 31:25
So I guess you know, at that point, there were so many patients, but not enough therapists in Hong Kong.
Bill Gasiamis 31:33
Do you think that your time on dialysis and waiting for a kidney transplant and recovering from that do you think that has helped you in your recovery from the brain hemorrhage?
Ritesh Nandwani 31:47
Well, after during dialysis, while I was doing dialysis, trying to do therapy, that was extremely difficult. Because when resumed dialysis, that day is pretty much gone. I couldn’t move much therapy was just extremely challenging. And then also the fact that at the same time, like I had already gotten married, but then a year later, after my marriage.
Ritesh Nandwani 32:17
It didn’t work out. I found out my wife was actually cheating behind my back, with a couple of guys, and then I was going to Dallas at the same time trying to figure out therapy. And then you know, at that point, even work started becoming a challenge.
Ritesh Nandwani 32:35
Like, things are not going well for work. So and then they got the call and like things are getting quite expensive. So everything was going on. And at this point, we already separated. So I was going through not only going through the stroke, I was going through kidney failure.
Ritesh Nandwani 32:58
The stress of work, and then I was diagnosed with depression after that.
Ritesh Nandwani Dealing With Kidney Failure, Dialysis, And DepressionBill Gasiamis 33:03
Of course makes sense. I didn’t realize that the kidney issue and the stroke issue were happening at the same time, I thought the kidney issue was way earlier.
Ritesh Nandwani 33:15
So it already happened about you know, in the early 2010s, I think even before that. I went to a second transplant, so it failed again. A year after the stroke, it failed again. So at first the like, let’s try to do plasmapheresis to save it. So I went through plasmapheresis this was December 2019. It went through plasmapheresis. So after I did that, I was good for like three months. But then when I did a blood test while I was in Paris, that’s when my mother in law, she’s like she saw it and then she’s like, I think there might be something wrong with your kidney looks like the plasmapheresis didn’t work.
Ritesh Nandwani 34:09
So when I come back after like, you know, we got call that things. You know, we came back to Hong Kong, and he’s like, Oh, me two weeks after I came back. He’s like, Yeah, we gonna start dialysis. So then we started dialysis.
Bill Gasiamis 34:25
Okay, second round of dialysis. So you knew what that was all about? And at the same time, you’re recovering from the brain injury?
Ritesh Nandwani 34:34
Yeah, correct. And when I started dialysis, he’s like, you might need to do a transplant but because they caught it very early, I had much more time. So we knew during COVID You can’t do anything so I was just waiting and waiting. So I was doing dialysis the whole time.
Ritesh Nandwani 34:53
And then at the end of 2020 my kidney which has been transplanted before, started this thing started going into rejection. So they’re like we’re going through surgery, now we’re gonna have to pull it out. And I’ll be back on my old kidney, and continue with dialysis. So I went through that, and that was going through that.
Ritesh Nandwani 35:22
And then later, they took the Kinney end of 2020, at this time I was already married. And then 2021 came, and that’s what like I had a significant weight loss. I was down to 45 kilos at the time. And I usually weigh between 65 to 70. So I lost all that weight, I was extremely skinny. He you looked at me, I just felt sick. So 2020, for me, was extremely challenging. 2021 came along.
Ritesh Nandwani 36:04
And that was when I was going through again, the work and you know, the cheating, 2021 was even more tough than 2020.
Bill Gasiamis 36:17
That’s too much for one person to have to go through the small amount of time that you went through it. So you were depressed right? Like, as if you wouldn’t be. But what were you thinking at the time? What’s your mindset? Like? Do you know what I mean? Like, are you thinking, I’m still going to keep fighting or it’s time to give up? How do you keep bloody fighting after all of that stuff.
Ritesh Nandwani 36:45
I was ready to give up. So you know, the cheating and everything I found out in July of 2021. And I remember, so my ex wife now we’re undergoing a divorce. But at that time, in 2021, in August, she moved out. And then I remember it was the middle of August that I was so depressed that I’d really gone to the doctor for depression, they started putting me on an antidepressant at the time.
Ritesh Nandwani 37:25
So I remember there’s one point where I didn’t even want to get out of bed to go to dialysis. And I was fortunate that the helper who was staying like, she wouldn’t stay, but she would come a couple of times a week and she found me in bed like we had scheduled for dialysis that day. So the first time, like I’m not feeling well, I don’t want to go today so I didn’t go then.
Ritesh Nandwani 37:55
She came and saw me another time. And she said that my bed was just a mess there was urine all over it and I was pretty much in a very different state. She said like I couldn’t even it was like I was drunk. But I was just so depressed. I didn’t want to go to dialysis, I was at that point where I just kind of ready to give up. And then it was she who actually got me in a car brought me to the hospital called my ex wife and everything, then they treated me to hospital for that.
Ritesh Nandwani 38:30
So obviously, they had to do dialysis again, but this time, they’re like, we’re gonna keep you in the hospital for a week. So they kept me in the hospital for a week until all my levels became normal and stable. So then at that time, even my, my ex wife, she decided to come and stay in the hospital with me. So we had talked about things and we were trying to work things out but eventually didn’t.
Ritesh Nandwani 38:59
Then I was in antidepressants for a short while so it was about two or three months. Then after that, you know I think this is something worth fighting for. I may be on my own at this point, but I’m going to fight for it. And then after that happened we both started figuring out what was going on.
Ritesh Nandwani 39:23
So even the maid of honor at our wedding actually ended up becoming a very close friend of mine as I was going through the process, so she was there so she and my ex wife don’t even talk anymore that’s how bad the situation became.
Ritesh Nandwani 39:39
But eventually she became very close to me and I remember there was a point where in, it was close to my 41st birthday which is in December so around October November December like yeah let’s do something different for your birthday this year. We can do your 40th birthday. Let’s do something. I’m like, you know, let’s see I’m not sure.
Ritesh Nandwani 40:00
And I remember one night, probably in October, she just come to my house. And then she’s like, we’re going out tonight. And I’m like no I don’t want to she’s like, no, we’re going out. We’re going for a boat party. And I used to love going to boat parties before my stroke. So like, how am I going to go on a boat, I’m in a wheelchair.
COVID-19 Impact, And Support From Unexpected Friends
Ritesh Nandwani 40:19
She goes, don’t worry, that’s my problem. And sure enough, I get to the port, she has people waiting to get me on the wheelchair to get on the boat. So they literally carried me in a wheelchair, on the boat, got a place for me there. And I guess the story like, because it was a lot of my ex wife’s friends were there. You know, obviously, she was the maid of honor.
Ritesh Nandwani 40:47
And so at this point, rumors spread around, they all knew the story. So they all ended up, you know, oh, let’s talk. So I ended up getting close to her friends at that point. And the maid of honor also invited a bunch of my friends, that was the first time in a long while that I actually had a big smile on my face that actually felt there were people around me.
Ritesh Nandwani 41:13
And then they also found out about the depression thing. So I remember, from that day, till the time, when I returned back home in the Philippines, every day, someone a friend of mine, or the maid of honor or something, they would all be at my house, either were just sitting, talking, or you would take me to a restaurant, or we would go out or something.
Ritesh Nandwani 41:36
There was someone there. So I think that was the time in my life where I really felt like and some of these guys I just met in December. Like you know, some of them I just met and till now we’re so close. So that was like one of the good things that had happened.
Ritesh Nandwani 41:52
Through all this. I felt there was this support structure from a lot of people that I didn’t know before. Yeah, it was remember this was COVID and a lot of my good friends had left because of the situation. So I felt really alone at the time especially your your wife at that time doing all that. And my close friend, my best friend was staying in Abu Dhabi at the time.
Ritesh Nandwani 42:24
And a very close friend of mine was staying in Australia and my family was in the Philippines. In Hong Kong, I was feeling extremely lonely in Hong Kong the house is so small that you don’t only feel lonely, you feel claustrophobic. And the way to lock down and Hong Kong where you can’t go out it was so challenging.
Ritesh Nandwani 42:46
But then when these friend started coming over to the house, at least I felt there was something I felt like yeah, you know, I can get through this.
Bill Gasiamis 42:56
Community, you can’t do it alone. Everybody needs community. Everybody needs something around them. There’s no way. You know, okay, and you recover. And then if you recover, and you’re going to be lonely, then what are you going to do? Like you have to reach out and find people? You might not have been in the situation where you could reach out.
Bill Gasiamis 43:15
But I experienced something similar people who I didn’t know, people who I didn’t have great relationships with. Were the people that helped out the most. And it was so weird, I didn’t understand that. I appreciate it, of course, and my really good friends now. But they’re the ones that did the majority of the emotional support.
Bill Gasiamis 43:37
I’m not sure why. But it’s a really gift, man. It’s a really great gift that you received, you know, by these people to come around you and to support you, especially with all the stuff that you had been through, as well as then understanding what had happened to your relationship.
Bill Gasiamis 43:55
Yeah, it’s pretty cool that they did that man and that they supported you. And it’s a testament to how far you’ve come. We can’t do it without people. Yeah. So are you still using a wheelchair?
Ritesh Nandwani 44:12
No. So as of last year, July, I’m off the wheelchair completely. Although I do use an electric wheelchair when I travel, because I’ve gotten back into my routine of traveling for work. So it’s only my travel that actually use a wheelchair or when I’m extremely exhausted, which thankfully, since July has happened only once I used the wheelchair again.
Ritesh Nandwani 44:39
So now I walk around with a cane and I can notice that things are improving a lot more like I did the second transplant in December 2022. So, from December 22 like maybe July 20 July 2023. This time the recovery from a transplant was much smoother.
Ritesh Nandwani 45:02
I didn’t have any infections, compared to like the first time that where I had two major infections and I was in hospital a lot more, this time I wasn’t. And it was already back in therapy after like, six months after transplant. I was back in physical therapy, and I regained walking with the gain much faster.
Ritesh Nandwani 45:23
My stamina has gone up, like, you know, before, it was a struggle to even do like two or three steps a day. Now it’s like, okay, 5000, no problem, I can do it. And then I’ve gotten back to weight training, as well, under a doctor’s supervision. So even like, now I’m back to like 64 kilos. So I’m close to my normal weight.
Ritesh Nandwani 45:47
I even see the progression, like I remember before, like, on the leg press, is I remember when I started, I was struggling with five kilos. Now during over, like, just this week, I had a personal record of 70 kilos. So I can see the progression, and this time was much faster. You know, it’s gotten so much better compared to the way it was even two years ago.
Bill Gasiamis 46:16
Ritesh I absolutely love your story, man. It’s such an interesting story. The setbacks, you know, there’s a lot of them and people a lot a lot of people wouldn’t manage to, you know, overcome so many setbacks, and you’ve overcome them again, and again and again. You know, a word comes to mind like resilient.
Bill Gasiamis 46:39
Would you consider yourself very resilient? Is there some kind of a ingredient that’s necessary to help you to be resilient. Clearly community is. What else is there? I don’t know. Like, I don’t get it. Because it seems like your life has been put on hold so many times, because of all these conditions.
Bill Gasiamis 47:03
I don’t know, like, give me a little bit of your philosophy in life, how do you grapple with all of the stuff that you’ve been through at such a young age? Okay, 38. Now, I know a lot of older people who are in their 80s and who go, ah, you know, I’ve lived 80 years, I’m bound to have something wrong with me. You know, it’s great that there’s medical help, you know, we’ll just go through it, we’ll overcome it, we’ll get there. But at 38 I was 37. And I had my first brain hemorrhage.
Bill Gasiamis 47:30
And I didn’t think I had a philosophy that was very, at the beginning, right, that was very kind of encouraging and supporting of myself and I couldn’t see the silver lining yet. There was no silver lining. To tell me a little bit about your life’s philosophy. How do you get through life?
Ritesh Nandwani 47:54
I’ve had a positive outlook most of my life, I’m not gonna lie. But there were two times in my life where I never felt more sad, more alone and more depressed. One was when my best friend passed away. That was when I was a 25 years old, passed away very young spinal complications, and he had passed away.
Ritesh Nandwani 48:19
So that was the only time that was the first time in my life where there was no emotion, I always felt so numb. The second time, was when I was going through all this. You know, I found out about the cheating. And I was going to dialysis and everything. And there was another time where I remember as soon as I found out, I became numb, I couldn’t talk.
Ritesh Nandwani 48:42
And I didn’t tell anyone I just went is this own bubble of mines. And quiet then then, you know,
Ritesh Nandwani 48:52
it was like after a week that I started crying and started doing this. But at the same time, I knew there was something wrong already with me mentally.
Ritesh Nandwani 49:01
So one of the first things I did was, I’m not going to call a friend, I’m gonna look for a therapist.
Ritesh Nandwani 49:10
That’s what it looked for a therapist because I felt even though I told my friends, especially about what I was dealing with my marriage, I knew they would say things about my ex wife, which I didn’t want to go through, because I knew my ex wife had her own mental problems, which I’d already known about. So I knew, I mean, or at least I felt that if we want to try to work on this, I need to stay away from that negativity. There might be my your friends or whatever, but I know all of them what they’re gonna say.
Ritesh Nandwani 49:39
100% and they’re gonna make a villain. Yeah, yes. So at first I was like, I’m gonna go therapist, look for a therapist. So eventually, I went through three therapists until I found the right one. Then she actually helped me kind of short things out. And then especially when I was going through depression,
Ritesh Nandwani 50:00
I’m actually I met her after the bout of depression when I knew I was depressed. After the doctors been antidepressant and this point when I had met her, I found out and then I was even trying to figure out now it was not only dealing with my issues, I was trying to figure out my ex wives in mental state and her her issues in which he was going through. So for the understanding her Yes, exactly, at this point you. That’s a great move. I love that because then you don’t take it personally. Yeah. And also this point, like,
Ritesh Nandwani 50:37
we were already I was trying to figure out what if it could be safe.
Ritesh Nandwani 50:43
So I found, I found a therapist who had that me the psychologist that actually written about that type of issue. I found him tracked him down. He’s a, he’s a therapist from Tennessee in the US, actually reached out to him to talk them attended a three day workshop, I understand not only her, I don’t understand her marriage and myself. So I kind of understood that we were going through and
Ritesh Nandwani 51:14
in Hong Kong, it’s like, the way the legal structures again, would get a guy to wait two years until I could file for divorce, if at least one of us strikes, or probably both of us agree there’ll be one year. But at this point, she didn’t want anything. And I said even at the same time, her case, on the average takes about two years. So they try to go through that process. So I said, Okay, this kind of synchronous two years.
Ritesh Nandwani 51:43
I’ll wait for two years, I’ll not only try to work in marriage, but also work on myself. And yes, my ex wife and I were still talking at this point. And the topic of divorce had come out maybe once or twice, but not again. So it felt like there was still some hope. But it was only when, so we reached two years in August of last year. And then I was able to fly out in November. So when I actually went to Hong Kong in November, to sign divorce papers that’s when actually I even told my parents that was the first time I told them what really happened. My cousin started finding out.
Dealing With Divorce And Finding Emotional SupportRitesh Nandwani 52:22
Actually there were a lot of rumors in Hong Kong, because the guy she cheating on me with I knew him. So that was the other thing and then even now at this point. His friends found out, and his friends actually ended up being good friends of mine because they didn’t like what happened it’s such a small community over there, especially those that stayed in Hong Kong during COVID.
Ritesh Nandwani 52:50
A lot of us became close because most people most expats left Hong Kong, and we all knew each other. So when the cheating happened, and everyone found out, I got even more friends this time or more supporters with the whole thing. And it became kind of like, okay, now people know, and I had all this question. So like, now, I since I’m dealing with it, I’m okay, with what has happened? Now I start, anyone asked me a question. I’m not gonna hide it. I told them what happened. And you know, I tried my best to work on it.
Bill Gasiamis 53:33
I love it. In my book, there’s a chapter that talks about friends, and how you have to be careful what you tell people about what has happened to you, and about how you’re going about your recovery. Because their desire to, to help sometimes gets in the way because they’re not doing, they’re not doing the type of help that you need. They’re just doing the overwhelming over the top kind of help.
Bill Gasiamis 53:59
And then there’s also the people who you tell that I’m going to do something and they take a negative, like, why would you want to do that. And they kind of try and change your mind about it. So I really make a point in the book to sort of say you need to hold your cards close to your chest, and you need to not tell a lot of people about what you’re doing and you made an amazing move there by keeping all that stuff to yourself.
Bill Gasiamis 54:25
And then most importantly, seeking out a therapist. So not only are you kind of avoiding all the difficult conversations with all the people who love you, but you’re dealing with it in a really professional and a really interesting way which is I’m actually going and getting professional help somebody who knows how to deal with these types of issues.
Bill Gasiamis 54:49
We’re not just getting emotional responses from the people that that love me. We’re getting like real responses real approaches you did a course three day course. I mean, that’s a awesome move to go through that process and deal with all of that. Would you call it all of that trauma? Because it would have been traumatic?
Ritesh Nandwani 55:11
Yeah, definitely. It definitely left some scars. But those are scars now that, you know, it’s been nearly three years, five years since a stroke. And in three years since the marriage was collapsing. It’s now only that okay. It is only talking about it to clear, obviously, there are a lot of rumors. I come from a very, very big family. My mom’s side, like, you know, they’re about almost 19 siblings. I mean, not all our siblings, but very close cousins.
Ritesh Nandwani 55:46
And we recently had a wedding about three months ago. That was the first time I attended a family wedding in about seven, eight years. And we usually have a wedding, one wedding or two weddings a year in our family. From my mom’s side, my dad’s side is eight siblings. So I come from a very big family. And both my mom and dad, my dad’s youngest, my mom’s second youngest. So now when it went for the wedding happened, in dubai our family wedding was just 800 people.
Ritesh Nandwani 56:17
It was a big wedding. And I haven’t seen any of them in ages. But there were so many different rumors about what happened between between my ex wife and I. And at this point, I remember I sat down with, first a few of my close ones. And then they asked me what really happened. So I told them exactly what happened.
Ritesh Nandwani 56:42
I guess not only to just you know, to make things clear that I am okay. But also to set the record straight. So many things are just not clear for everyone. People are just wondering, and all that. So it’s like, I have nothing against her. I’m thankful my ex wife was with me during that time in my life, where I needed her. And she and I might not talk anymore, but her mom and I are still in touch.
Ritesh Nandwani 57:15
Her mom, God bless her really treat me like a son. Going through the whole process. You know, she doesn’t mention her daughter or anything. But she really looks at me as a son.
Bill Gasiamis 57:31
I love that you set the record straight and sort of stopped the rumor mill because the rumor mill can be terrible. And it’s never helpful. Really it never ever helped. And it’s great that you set the record straight and you’re just sort of this is what happened, this is how it was this is where I’m at, and everyone can move on with their own life now.
Ritesh Nandwani 57:52
Exactly. And because I come from a big family, a lot of these rumors, they come out pretty nasty in some cases. But I still tell them like I don’t have any resentment against her, in the beginning yes, I did I hated her for what I was going through, what she did to me, but now I’m like, at peace. I have to go through that.
Bill Gasiamis 58:18
It seems like all the things that you’ve been through. It seems like this has been the most significant one, though, because you’ve spoken about the relationship break down more than you’ve spoken about the two kidney transplants more than you’ve spoken about the stroke. It seems like it’s the one that has made you more wise, more kind of educated and more understanding than the other conditions. Is that accurate?
Ritesh Nandwani 58:49
Yes you could say so. With the stroke that happening like you know, I kind of understood the physical nature of it. Right? So you kind of understand that now you kind of don’t know what to do. I was just thinking of it more logically. This is how we do about it tried to fix it. When it came to the emotional side it was more challenging.
Ritesh Nandwani 59:18
And they go hand in hand. As much as you need to try to compartmentalize they go hand in hand. And I’m sure my stroke, definitely affected situation. It didn’t make things easy and you know, the transplant and everything. Most people would be overwhelmed. And I get that so I have a feeling that affected that a lot.
Ritesh Nandwani 59:44
You know, she could have been overwhelmed, and my ex wife and I had a big age gap. We’re 15 years apart she’s much younger, so I’m sure this really affects her and it all went tied in together. So I felt both affected each other in a lot of sense.
Bill Gasiamis 1:00:07
You know, relationships around stroke do break down a lot. And a lot of the time, it’s got to do with the person who hasn’t had a stroke the partner struggles to deal with their partner being unwell and not having the resources and not being equipped enough to support them through that.
Bill Gasiamis 1:00:26
And that people take it personally I had a stroke, and then they left me. And I get it. That makes complete sense, right? What a time. But I see that when you can get over the initial challenge of I had a stroke, and she left me. And when you get over all of that the person who left you after you had a stroke probably did you a favor.
Bill Gasiamis 1:00:50
Because if they’re not capable of supporting you through stroke, and if they’re going to be a burden to have around and make your life harder, better that they’re not around. You know, and as hard as that is, and it’s emotional, and it ruins a family and changes things. It’s such a bold move for somebody to make the decision to leave, because I’m not suggesting that everybody does, but it’s such a bold move, because they are probably going to make the stroke recovery worse by being around in a shitty relationship.
Ritesh Nandwani 1:01:32
Dealing with the pain now, going through the pain now, finishing it off, rather than dealing with a later.
The Hardest Thing About The Stroke For Ritesh NandwaniBill Gasiamis 1:01:38
Yes dragging it out and making it more painful for longer. Unbelievable story, man. That’s profound stuff that I heard from you today. Like, I really appreciate the fact that you shared that you’re so open. Tell me a little bit about what do you think the hardest thing about stroke was?
Ritesh Nandwani 1:02:03
I think every stroke was different. And there’s so many unknowns. Because, you know, I’ve spoken with people who had strokes and my family, like one of my cousin’s, he’s had a stroke. fully recovered. My aunt had a stroke in 2006. And until now, she can’t speak.
Ritesh Nandwani 1:02:23
So I’ve had these two people who I’m close with and I see one who’s completely normal one who’s not where do I fall in all this? Now I went through it. I was like, Okay, what happened? Like, even my cousin’s struggling, didn’t know. He had told me like, I met him probably two weeks after my stroke. And then he said, look at where I am today, and you can get back on your feet. So there was a lot of hope there.
Ritesh Nandwani 1:02:53
And I was like, Okay, now, it’s a broad spectrum. Every stroke is different. So where do I fall in this? And where do I go here?
Bill Gasiamis 1:03:03
So it’s like an identity crisis there? Was there?
Ritesh Nandwani 1:03:05
Yes. Yeah. And, you know, also during all this time, what I noticed a lot of people is the stroke defines you in a lot of cases. But it was COVID. That actually helped me with that. Have you helped me deal with that. Because like, so my word it’s, there’s a lot of meetings and like, before, I was traveling a lot, like within a month, I spent like maybe six days in Hong Kong, the rest of the time I’m traveling, so I’m always meeting people here and there. But in this case, with COVID.
Ritesh Nandwani 1:03:44
Everything was via zoom. I remember I did a one year I was working with a venture capital fund in the US. I finished I ended up finishing my MBA and everything. Nobody knew I had a stroke, I started my MBA in 2017, 2019 I graduated, other than my classmates, and my professor knew about it. Anyone else that I met online, no one knew what I was going through.
Ritesh Nandwani 1:04:15
So that kind of like, it didn’t define me as the guy who had a stroke or the guy can’t walk. It didn’t define me anymore. And I kept that with I didn’t tell anyone until things started opening when I met him to like you’re in a wheelchair I go yeah, they’re like what happened? We’ve been talking with you for a year we didn’t know. I’m like yeah.
Lessons From The Stroke Recovery StoryBill Gasiamis 1:04:35
I like that. I like that because it didn’t become you know, Ritesh, the guy that had a stroke. It’s just Ritesh. Right? I love that. What has stroke taught you?
Ritesh Nandwani 1:04:46
So the stroke, never look at it as a wall that stops you. Look at it as a wall that shows you another path in life that where you’re supposed to go, that wall put down, maybe that’s not where you’re meant to go. It just shows you another direction, don’t look at it as a flat wall, look at it as wall that’s kind of curve or, you know, diagonal that’s pushing you in a direction where you should have gone more. And definitely learn to appreciate things a lot more. Go on a different direction. And there’s so many things that you value more now.
Bill Gasiamis 1:05:41
The stroke has done that you, did two kidney transplants make you feel that way?
Ritesh Nandwani 1:05:48
The second one did a lot. The first one, the first one. So I was always the guy who had a lot of adventures that I wanted to go to I wanted to do, but never got around to doing it. I was always scared to do things alone. So after my first transplant, that’s when I started figuring out who I was. And the first thing I did actually, after my first transplant was I didn’t stick around with the same group of friends that I had.
Ritesh Nandwani 1:06:24
The group of friends that I had in Hong Kong at that time like they were the guys that most of them were married or getting married that time, some had kids, and with the guys I usually hang out with we’ve been going to the same place every weekend, get wasted and not do anything else. But I wanted to start meeting people started wanting to try new things. And they didn’t want to go.
Ritesh Nandwani 1:06:53
So I’m going to just go around, go to Hong Kong Island and just meet people. And I started meeting people that way. And the good thing in Hong Kong is when you go say hi to someone. Next thing you know, they’re your friend in the same night. And that’s what happened. And at first I didn’t believe that was possible. But it was it was so much easier even built my confidence in talking to people.
Ritesh Nandwani 1:07:19
So I was just going up to random people or like we’re talking to talking to something, we talk and started having fun. That’s where I met a lot of my close friends like my best friends in Dubai and another close friend in Australia so that that was during that period of time, where I started meeting people and I opened up not only that, and then I ended up traveling a lot more got to know myself even more.
Ritesh Nandwani 1:07:43
You’re visiting new places, whether you do it alone or with a friend or a random person, I opened up that that’s what the first transplant did. The second transplant, and stroke. It kind of gave me another phase in life where I appreciated not only the new people, but the people who were always there that I may have taken for granted.
Ritesh Nandwani 1:08:14
Alright, so that’s when I appreciated a lot more my cousins especially. And you get back to your roots at the same time. Like you can imagine I had left the Philippines in 2004 and he came back in 2022. So even like right now, I am living with my parents, although now I’ve started to travel for work again, and I spend 50% of my time in Dubai. But getting back to your roots meeting my old friends like everyone, just three weeks ago, I met a friend of mine from fifth grade. We bumped each other in a mall and we started talking in the past three weeks we hung out like maybe twice.
Bill Gasiamis 1:08:59
I can relate to that. Connecting with your family and friends again and your roots. And yeah, I can relate to that I’ve gone through that similar thing where, you know, I just looked around and saw the people who have always been around and just let them know that I know that they’ve always been around and I appreciate them and I love them and that was really a good thing for me to do like it was also healing and it also made it
Bill Gasiamis 1:09:25
I think it was a good thing to do to let people know what I thought of them you know, because there was a chance I might not be around so it was good to tell them there’s gonna be stroke survivors who have just had a stroke or a few years into stroke or whatever listening to this, you know, what’s the one thing you want to leave them with? What do you want to tell them about the possibilities moving forward?
Ritesh Nandwani 1:09:50
A stroke doesn’t end thinks it. It can give you a new life. Consider it as rebirth. Like, even before my stroke, even in my work, I was always doing something that I did enjoy. But I was always working for someone. It was only after stroke. And after going through all that mess, like you know, I decide now I’m gonna do what I really want to do.
Ritesh Nandwani 1:10:22
It is a struggle, yes, no doubt, but I feel happier. And I appreciate things a lot more now. So like, right now, you know, since stroke, now I have four businesses I’m running. And two of them actually are with my close friends when I was a kid. So we’re actually doing something that we all like. And at the same time, you know, we’re doing something that we appreciate we enjoyed, but it doesn’t feel like work.
Ritesh Nandwani 1:10:50
In order to things I’m beginning to. I mean, now I appreciate relationships, I appreciate even new friends that I’ve met through this whole process. I’m really appreciating that a lot more that, you know, I guess because like the world is so big, and we’re 8 billion people. A lot of times you think that it’s very difficult to make new friends.
Ritesh Nandwani 1:11:21
But if you’re willing to say hi, and throw yourself out there, it’s not as hard as it is. And that was the one thing that I always had difficulty with, like, going through all time was like shit, I feel alone. I don’t know who to call. But then sometimes you say hi to someone, and you just start talking.
Ritesh Nandwani 1:11:41
Eventually, in some cases, not all but some things you actually ended up meeting new friends that you guys have a logical relator. And you’d be surprised how many people don’t really look at your disabilities. A lot of people think, even me like I thought it would really define me. Right? But then, as I met so many people, it’s not like I even met a girl was like, I remember the first time I met her, she me with a cane and said come dance with me.
Ritesh Nandwani 1:12:11
And I’m like, can you see my cane? She goes, you know what? Relax I got it, she’s holding me by the hips. And we’re dancing. She even took the cane and put it away from me holding me by the hips and we’re dancing. And this is the first time I met this person. Like now she’s one of my closest friends. But I never thought that was possible.
Ritesh Nandwani 1:12:31
That you know, people don’t look at you with that. Yeah, that’s one thing. I think I have to say that the stroke will give you a new life, and you can’t let it define you.
Bill Gasiamis 1:12:44
Beautiful mate. On that note, I really appreciate you joining me on the podcast and reaching out and sharing your story. Thank you so much.
Ritesh Nandwani 1:12:52
Thank you as well for giving me this chance.
Bill Gasiamis 1:12:55
Thanks for joining us on today’s episode. If you’re interested in my book about stroke recovery, you can grab a copy on Amazon or by visiting recoveryafterstroke.com/book. To learn more about my guests, including links to their social media, and to download a full transcript of the entire interview head over to recoveryafterstroke.com/episodes. A huge thank you to everyone who has already left the review it means the world to me.
Bill Gasiamis 1:13:24
Reviews are crucial for podcasts to thrive, and your feedback helps others find this valuable content making their stroke recovery journey a little easier. If you haven’t left a review yet, please consider leaving a five-star review and a few words about what the show means to you on iTunes and Spotify. If you’re watching on YouTube, leave a comment below, like the episode and subscribe to the show on the platform of your choice.
Bill Gasiamis 1:13:54
If you are a stroke survivor with a story to share, and now is the perfect time to join me on the show that interviews are unscripted and you do not require any planning. Just be yourself and share your experiences to help others in similar situations. If you have a commercial product that supports stroke survivors in the recovery, you can join me on a sponsored episode of the show. Just visit recoveryafterstroke.com/contact, fill out the form with your category and I’ll get back to you with details on how we can connect via zoom. Thanks again for being here and listening. I truly appreciate you see you on the next episode.
Intro 1:14:34
Importantly, we present many podcast designed to give you an insight and understanding into the experiences of other individuals opinions and treatment protocols discussed during any podcast or the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed. All content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for information purposes only and is largely based on the personal experience of Bill Gasiamis.
Intro 1:15:04
The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.
Intro 1:15:29
Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be, call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.
Intro 1:15:53
Medical information changes constantly. While we aim to provide current quality information in our content. We did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide however third party links from our website followed at your own risk and we are not responsible for any information you find there.
The post Inspiring Stroke Survivor Story: Ritesh Nandwani’s Journey of Resilience and Recovery appeared first on Recovery After Stroke.
Enhance Salon Comfort and Safety with HeadBed: Prevent Beauty Parlour Stroke SyndromeThe HeadBed device is an innovative head and neck support cushion designed for use with hair salon wash basins. It aims to provide enhanced comfort, safety, and hygiene for clients during hair-washing sessions.
Key Features:1. Ergonomic Design: The HeadBed is specifically designed to support the head at the heaviest point, the occipital bone, which helps in reducing strain on the neck and back muscles. This ergonomic support allows clients to relax fully without discomfort (HeadBed USA) (HeadBed). 2. Universal Fit: It fits all standard backwash basins, including portable and home salon basins. The device comes with three height adapters (20mm, 25mm, and 30mm) to ensure it can be adjusted to fit various basin depths (HeadBed) (HeadBed). 3. Hygiene and Safety: Made from medical-grade silicone, the HeadBed is 100% hygienic, non-absorbent, and easy to clean between clients. It meets salon occupational health and safety requirements, reducing the risk of bacterial or viral transmission (HeadBed) (HeadBed). 4. Medical Endorsements: The HeadBed is recommended by physiotherapists, chiropractors, and remedial massage therapists for its ability to prevent neck injuries and alleviate discomfort during hair washing. It addresses issues like the “Beauty Parlour Stroke Syndrome,” a condition that can occur due to improper neck support during washing, leading to severe complications such as vertebral artery dissection and stroke (HeadBed) (HeadBed). 5. Durability: The HeadBed is durable and resilient, with a five-year warranty. It is resistant to chemicals and non-hazardous, ensuring long-lasting use in various salon environments (HeadBed).
Benefits: Client Comfort: By providing proper head and neck support, the HeadBed significantly enhances the client’s comfort during treatments, allowing for a more enjoyable salon experience. * Salon Efficiency: It helps maintain proper client positioning, preventing water from running down their necks and reducing the need for repositioning during treatments. * Injury Prevention:* Supports the head’s weight, minimizing strain on the client’s neck muscles and preventing potential injuries, including severe conditions like Beauty Parlour Stroke Syndrome.
The HeadBed is an essential investment for salons aiming to avoid beauty parlor stroke syndrome and improve client comfort and safety during hair-washing sessions. For more information or to purchase, you can visit the HeadBed official website.
Headbed: How To Prevent Beauty Parlour Stroke Syndrome Full InterviewHeadBed was invented to prevent damage to the neck and the blood vessels while at the hair salon wash basin.
Highlights:
00:00 Introduction
05:35 The Beauty Parlor Stroke Syndrome
15:21 Preventing Hair Salon Injuries With HeadBed
26:31Ethical Business Practices In Hairdressing Industry
35:46 Health And Safety In Hairdressing Salons Including HeadBed Use
45:13 Improving hairdressing experience HeadBed
Transcript:
Introduction – HeadBedBill Gasiamis 0:00
Hello everybody. The production costs of today’s episode have been paid for by HeadBed. My guest today is Catherine Randabel. Catherine is the inventor of HeadBed, a Western Australian naturopath with a background in physical education, psychology and neuropathy.
Bill Gasiamis 0:19
She started her naturopathic practice in 1991 and has since built a successful practice blending various natural therapies including remedial massage. Catherine’s journey to inventing the HeadBed began when she observed that many of her clients experienced neck problems and headaches after visits to hair salons.
Bill Gasiamis 0:41
Noticing the discomfort and potential health risks associated with hyper extension of the neck during hair washing. She was inspired to find a solution. And also joining us midway through the interview is Sandy Chong, who is the CEO and a board director of the Australian Hairdressing Council. She has significantly influenced the hairdressing industry in Australia. Through her extensive experience and leadership with over 39 years of experience. As a salon owner of Suki hairdressing.
Bill Gasiamis 1:16
Sandy has been a prominent advocate for hairdressers, barbers, and educators across the nation. A prominent advocate for the HeadBed Sandy strongly supports the use of this innovative product in salons to enhance client comfort and safety. Sandy encourages hairdressers to adopt the HeadBed recognizing its importance in preventing neck injuries and promoting overall wellbeing for clients, including stroke survivors. Catherine Randabel, welcome to the podcast.
Catherine Randabel 1:50
Thank you, Bill, looking forward to talking to you.
Bill Gasiamis 1:53
Thanks for being here. I really appreciate it. Just give me a little bit of background before we get started and really dive in deep to this amazing product that you have. Tell me a little bit about your background, what have you done in your life? What kind of work have you been involved in?
Catherine Randabel 2:14
Right? Well, Bill after school, I went to university to do a degree in physical education, because I was fascinated with ergonomics, and biomechanics and the human body. So I thought I was going to become a physiotherapist or maybe an exercise physiologist.
Catherine Randabel 2:32
And so that was my university days. And I just went on a little bit more and more sports massage, and nearly became a physio but concentrated on natural therapies with an emphasis on ergonomics and remedial sports massage. So that’s my background, and I’ve been in private practice in Perth, Australia for since the early 90s.
Bill Gasiamis 3:00
And what kind of a practice?
Catherine Randabel 3:03
It’s basically called a natural therapy practice naturopath and I do a blend of nutrition, lifestyle, adjustments for better health, and including into that remedial massage and sports massage when clients come to me with, you know, muscular skeletal problems. And this is how the idea for my HeadBed neck protection device started because of one of my clients.
Bill Gasiamis 3:34
And since we’re talking about we might as well show. This looks like a croissant. It’s not a croissant. It wouldn’t be that tasty as a croissant would be. But we’ll talk about it in a minute like more so. So how do you go like, what happens? How is the process that your head goes through when you decide that as well as providing these services as a naturopath that you’re going to sort of find a way to support people going to a hairdresser. That’s pretty weird. That’s a bit strange that somebody would have that kind of a light bulb moment.
Catherine Randabel 4:16
Well, it really was a light bulb moment, one of my most delightful clients and friends Rose in 2010. She came to me after a week of tremendous neck pain and migraines. And she doesn’t normally have migraine. So she asked me, to see to a remedial massage. And upon questioning her, she said that it started after she had been at a hairdresser.
Catherine Randabel 4:40
Now Rose always was beautifully presented and coiffed and her job was dealing with public so she loved going to the hairdresser. But she hated the basin because she was so uncomfortable at the basin. And so with working with her I was questioning I said well was there something on the basin to help protect your neck or soften? And she said, well, I don’t know there was a little bit of a foam like a little foam cushion, but nothing really comfortable.
The Beauty Parlor Stroke SyndromeCatherine Randabel 5:12
And after that she really had this nasty migraine. So, I went back to the medical journals, I started researching the Lancet medical journal journals in neurology, from America. And to my great shock and horror, I found out that they were reported cases of strokes. For ladies who had been at the hairdresser.
Catherine Randabel 5:35
In actual fact a New York doctor, a neurologist reported on five cases of strokes following sessions at the hair salon and they coined, they coined a term for it called Beauty Parlor Stroke Syndrome. So it’s a recognized medical issue that can happen at the salon.
Catherine Randabel 5:56
It’s a very rare but when I read that, back in 2010, the research not only in Europe in the UK, the Lancet medical journal very prestigious. In 1997, the Lancets reported on a 42 year old woman who had a massive stroke following the session at the hairdresser. So these instances were being recorded. So, to my way of thinking, I was always very practical person, I thought to myself, well, all you need to do is to support the weight of the human head. Now, do you know how much a human head weighs?
Bill Gasiamis 6:40
I think is about four kilos, very good.
Catherine Randabel 6:44
Imagine, if you take between four kilos for women and up to five kilos. For men, it is extremely heavy on the end of a flexible neck. So when the human head reclines backwards over the sharp edge, hard edge of a basin, there can be up to 20 kilos of pressure on the vertebrae and the neck muscles of the neck supporting the cantilevered weight.
Catherine Randabel 7:14
So I thought to myself, it’s a bit like a golf ball on a tee, you have a little tiny surface area, which we eventually was designed and research we built in a little surface area, a platform that when the human head reclines backwards, it rests, the back of the head will be supported by this little platform. So it takes all the weight off the neck muscles. And as you know, from the heart, the blood flow goes up the neck into the head and the brain.
Catherine Randabel 7:49
So little fine blood vessels go through some little holes in the neck vertebrae. And imagine just for illustration, if this little straw is there, if you just keep the head backwards, what happens with a lot of these vertebral artery, little blood vessels, they get kinked and in that kink, there can be little micro tears on the inside.
Catherine Randabel 8:14
And that can be the start of damage and it can be the start of little blood clots. So sometimes there was a lady in the UK, about three years ago, she went to the hairdresser felt unwell afterwards and it was three days later that she had a stroke.
Bill Gasiamis 8:35
I know of people have had a stroke, because they sneezed it caused the vertebral artery dissection, people who have had carotid artery and vertebral artery dissections because of collisions where their head was like a whiplash situation and the damage occurred on the day. But then the stroke occurred later on down the track, usually few weeks or a couple of months down the road.
Bill Gasiamis 9:04
And it’s not uncommon to hear about it and to interview people about it. And I never knew there was beauty parlor stroke syndrome. And that sounds very similar to a syndrome that is spoken about in the forestry industry, where lumberjacks as the Americans call them, look up all the time.
Bill Gasiamis 9:29
And it’s called lumberjack syndrome or something like that. And they cause damage to the blood vessels just because they simply have a lot of time looking up at trees falling down. So this is fascinating that we here we are now for the opposite reason that potentially putting people’s necks at risk.
Catherine Randabel 9:51
This is where I came from, it absolutely floored me because I didn’t realize that in the shampoo basin of most addressers, and hairdressers are the most caring people person, but they all know that their clients are usually uncomfortable. So some of them support with one hand while they’re doing the shampoo. Some of them put extra towels around the neck.
Catherine Randabel 10:14
But it’s not the neck that has to be softened up. It’s supporting the weight of the head. And when I realized that I started talking to some of the professional hairdressers here in Perth in my city, and they all admitted to me, they know is not a comfortable position.
Catherine Randabel 10:33
But women want to have beautiful hair, and they put up with the discomfort. But also who knows how many headaches, how many sore necks, how many sore shoulders, pins and needles down the arms can be a result of being at the shampoo basin, not necessarily the horrible situation of the stroke.
Catherine Randabel 10:54
Because the nerve endings can also get pinched in the neck by that position of the head, reclining backwards without support. So when I thought about all that Bill, I thought to myself, how come somebody hasn’t done anything about it? And then my friend said, well, you have an idea. So why don’t you follow up on it. Then that’s how it started in 2010.
Catherine Randabel 11:22
And we did two years of research. So discussing with, you know, the hairdressers here in Perth, and they told me what they wanted in a neck cushion because they all tend to have neck cushion. So we devised the soft, flexible silicone cover for the neck, which fits into the curve of the basin. But the inventive step was to organize the head platform that was attached to it.
Catherine Randabel 11:49
And also the three little wedges, which gives it adaptability to move up or down. If somebody’s got a very stiff neck. Exactly right, you can be a bit like Lego adapters, you can raise the head platform, or drop it depending depending on what the client needs the person at the shampoo basin needs. So once you have the head support there, you take 20 kilos of pressure off the neck.
Catherine Randabel 12:16
And so the hairdresser also is very relieved because they can do their job with peace of mind. They don’t hurt their own hands supporting the weight of the person’s head while they’re massaging it. And we’ve designed it so that there’s lot less water can get pass to the person’s neck is right against its medical grade silicone.
Catherine Randabel 12:37
That’s why it lasts. Some of my hairdressing clients have had their HeadBeds for nine years, once the buy one is highly sustainable product. It does not go to landfill. So we’re very proud of that we’ve chosen the best grade medical grade silicone because then it’s softness of the silicone just seals the neck and water doesn’t drip past into the person’s back.
Bill Gasiamis 13:02
Feels really good on the skin, it feels really good to touch. And feel like it’s very sort of like annoying sometimes you get some fabrics and some or leathers and some things that are annoying. So as a male, like I’ve got no idea about this stuff, because I very rarely get a head massage or a wash or anything like that maybe twice in my life.
Bill Gasiamis 13:27
And to be honest, I don’t think it was an amazing experience. But I forgotten about it. Because what I remember is you know how nice it was to have my hair washed and then not to have to worry about hair going all over the place and all that type of thing.
Catherine Randabel 13:42
It should be a beautiful experience, it should be a most relaxing, beautiful experience.
Bill Gasiamis 13:47
Yeah. So you’re saying that there was products, or there are still products, probably not the HeadBed, but other products that are similar to that that hairdressers have always tried to use to always try and make it more comfortable for their clients.
Catherine Randabel 14:04
Yep, the thing, the inventive step, there was nobody and this is what a hairdresser said to me at one of the trade shows I went to just how come one of us didn’t think of that. But that’s because I’ve got the sort of more anatomy and physiology and the health background. Which it became so evident to me that all you needed to do was support the weight of the head.
Catherine Randabel 14:27
What they were trying to do was just put a bit of cushioning around the neck. But the problem is the weight of the head hanging backwards is what was the terrible pressures on the blood vessels, the nerves and the whole structure of the neck. So once I got that incorporation of the head platform into it and I was helped by beautiful hairdressers here in Perth and also a wonderful product design engineer Mr. Cliff Green.
Catherine Randabel 14:55
He just nailed what we were trying to achieve in getting the minimal flat surface under the head of the client. So the hairdresser can do their job, easily 95% of the head is free for shampoo and little tiny surface area, taking all the pressure off the neck because the weight of the head is supported.
Preventing Hair Salon Injuries With HeadBedSo the thing about it is you’re your preventative person, right? You’re all about, let’s fix what’s wrong. But also let’s prevent things from happening. Hairdressers are about fixing hair they don’t see injuries everyday, they don’t see people who are trying to fix things. They just see people who want a hair cut and want colors or whatever they want.
Catherine Randabel 15:47
Correct so they are trained to look at that side of things. And I’d say 99.9 of women up then some men absolutely love having the salon experience. But from my point of view, it has to be a safe experience as well. And when you have a HeadBed on the basin and it becomes comfortable, and once it’s comfortable, it’s safe, and it’s enjoyable.
Catherine Randabel 16:11
And often some hairdressers have said to me, it benefits their business because people refer their friends back to their salon. But also they can offer more services. They can offer eyebrow tinting, do eyelashes and waxing and all sorts of extra services with the person comfortably reclining in the shampoo basin. Before that, they’d go no, no, no, no enough, enough, I’m uncomfortable I’m getting out of there.
Bill Gasiamis 16:39
So there’s also in the uncomfortable position, that’d be a time limit as well.
Catherine Randabel 16:45
That’s why they just want to get out of there as quickly as possible. You saying with men, more and more men now go to barbers. And in actual fact, in 2016, a 42 year old young man had a stroke from being at a barber. So it was reported, again in the media over there. And it was a massive, you know, they sued the salon for hundreds of 1000s of pounds.
Catherine Randabel 17:11
So not only is traumatic to have the injury, I mean, it as you know yourself and all your listeners know it’s a life changing injury to have a stroke, but the trauma and the rehabilitation, and then you have medical bills for many years following so all that’s you know, if you can prevent all that right at the start to do not let the human head hang backwards into a basin without head support.
Bill Gasiamis 17:46
So who buys this? Do only hairdressers buy or can I buy it? For example, I go to your website or to your supplier, whoever. And if I want to take a preventative step as a stroke survivor, because I’ve already had brain injury, I don’t want another one. And I wanted to just get my own because say my hairdresser didn’t know about it or did or didn’t buy one or doesn’t have it? Would I be able to buy one from you and bring that to my hairdressers appointment?
Catherine Randabel 18:18
Oh, absolutely, absolutely. I’ve had many, many of my own clients from my practice, say fantastic. Catherine will buy our own and any salon we go to especially some people who travel a lot or people caravanning around Australia or the States or Europe, they bring their own HeadBed with them. And make sure you have your three little adapters with you.
Catherine Randabel 18:40
And just explain to the salon owners it please if you put that on your basin then my head can be supported and I am safe. So yep, you can get one through the website. I also have some wonderful distributors. In Australia. There’s a great organization called Sustainable Salons and their members and they support products that are not throwaway and they recycle human hair and foils and plastic bottles.
Catherine Randabel 19:09
So it’s a big organization of hairdressing salon members in Australia Sustainable Salons and Sandy is a great supporter of their work. So they sell my HeadBed I’ve got a distributor in Queensland in Brisbane, but in Europe is probably the biggest distributor that we are very lucky to have a French company called Cindarella. So you just look up our website and on there, there will be the list of all the distributors we have.
Bill Gasiamis 19:45
You mentioned Sandy, Sandy is the CEO of?
Catherine Randabel 19:48
Sorry, yes, Sandy Chong is the CEO of the Australian Hairdressing Council.
Bill Gasiamis 19:55
And we’re going to be talking to her in a little while we’re going to get a little bit of feedback from previously a person who was a hairdresser for many, many years, and now has moved into this particular role. And we’ll get some information from Sandy as well. So what you’re saying is that a lot of people buy this, put it in their luggage and travel with it, because they can just go to one of the websites and pick up one, what do they cost?
Intro 20:25
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse, and doctors will explain things that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 20:49
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called seven questions to ask your doctor about your stroke.
Intro 21:09
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website. Now, recoveryafterstroke.com and download the guide. It’s free.
Catherine Randabel 21:28
Well, in Australia, there are about $98 plus the postage within America is just adapted. We have an agent in America so you can buy it off the website over there. Lynn Sheffield will help. But at the moment 90% of our clients are salon owners, so they buy it for their salons but definitely we have about 10% of people are just ordinary individuals who would like to have this as a safety device that they can carry with them and present it to the salon they go to and just explain a little bit.
Catherine Randabel 22:01
The hairdresser can look online at the video because it will fit 95% of basins some basins are a little bit different in their shape. But that’s why we made the HeadBed with such flexible silicone. It’s very, very adaptable. It’s very soft and it will bend and but the thing that is not sort of bendy is that firm head support. But the rest of it will it will adapt to most curves of the neck over any basin in the salon and shampoo basin.
Bill Gasiamis 22:35
So the American distributor do they sell direct to public? Or can public just buy it from a different location? Where do they have to buy it from?
Catherine Randabel 22:48
Well, she will post it up to anybody who goes on the Headbedusa.com website and you can order online. I’m working with a gentleman in Los Angeles who is looking at becoming a distributor. So we’re just trying to, you know, find more ways of letting people know that there is a safety device there that should be on just about every shampoo basin around you know, around the world because you want to avoid the potential for an injury.
Bill Gasiamis 23:22
Is a $100 expensive for a hairdressing salon to put on their little basins?
Catherine Randabel 23:29
Not at all. I mean a pair of good scissors hairdressing scissors is several hundreds of dollars. A shampoo basin is several 1000s of dollars. And another thing that I’ve been so proud of is often a hairdresser will say to me, we knew our basins were uncomfortable. So we were thinking of replacing the basins 1000s of dollars, she said, but when we put our HeadBed on the uncomfortable basin, the clients became super comfy and asked Oh, did you change your basins?
Speaker 1 24:01
Because they haven’t worked out where the difference is, is but they realize that they are suddenly more comfortable. So for a small investment of I think in Europe, it’s about 150 euros or so for the HeadBed. And our distributor sells it with their new basins because it’s part of the package because they know it makes their Cindarella basins much more attractive to buy because of the comfort that the HeadBed being on it provides.
Bill Gasiamis 24:37
So you have a partnership with a manufacturer of a basin and that’s the perfect marriage, isn’t it? That’s the most ideal situation. But then for people who have already had their basins installed, it’s no big deal because then they can just get something and implement that compared to the cost of scissors like next to nothing.
Catherine Randabel 25:01
That’s right. Not even $200 I mean scissors and then all the, you know, the hair dryers equipment and Salon furniture, it’s very expensive. Whereas this is not an expensive solution to, first of all, making the basin safe and comfortable. And then from there, as I say, very often, the hairdresser reports that they can actually have more business because their clients are so comfortable, they accept to have more services done at the basin and not realizing that, you know, well could fall asleep here.
Catherine Randabel 25:37
Whereas before, all they wanted is please shampoo, rinse my hair, and let me get out of there and carry on with the cut and the blow dry and but the shampoo experience itself should be as you said yourself, it’s such a wonderful feeling to have a head massage, and this should be very relaxing. And it should be safe. That’s where I come from the safety, health and safety point of view.
Bill Gasiamis 26:02
Yeah, I love it. We’re going to pause for a moment. And we’re going to bring Sandy on and we’re going to have a conversation with Sandy. And then you and I we’re going to continue the conversation after we’ve spoken to Sandy. So let’s pause for a moment. And let’s bring Sandy on Sandy Chong welcome to the podcast.
Sandy Chong 26:18
Thank you. Hi, everyone.
Bill Gasiamis 26:22
Thank you so much for being here. Really appreciate it. Can you start by giving us a little bit of a background to what you used to do in the past and what you do now?
Ethical Business Practices In Hairdressing IndustrySandy Chong 26:31
Okay, so I am a hairdresser. And I also did own my own salon for 38, 39 years. And but I don’t do that anymore. I’ve sold that I am the CEO of the Australian Hairdressing Council. And I’ve been that since 2012 I think. So my role is actually representing the hairdressing industry when it comes to lobbying and advocacy work. But more than anything, we do, I guess, advise and nurture our small businesses.
Sandy Chong 27:05
We recognize ethical business practices within the hairdressing industry. And I think that’s why and how we actually came across, you know, Catherine and her product, because of what her product does when it comes to taking good care of our clients, and having the best interests of our clients health and well being while they’re in our salons and definitely at the basins. And so that’s how we came across Catherine in Oh, 10 years ago. That would be because Catherine comes under, you know, definitely ethical business practices, which is something that we recognize in our industry.
Bill Gasiamis 27:42
It’s really interesting to say that you guys practice ethical business practices in hairdressing because I, you can see I have a number one, and I’m not sure. Like what level of ethics you need to uphold to be able to do a number one and I never connected my hairdressing experience with that. How is it that that came to be why is that a thing?
Sandy Chong 28:07
Well the thing is with the AHC ethical business standards come under an accreditation process when it comes to our businesses. So there are certain standards that we accredit them on or recognize them on. So management operations is one client services presentation, for instance, which is what this would come under, because OH&S, this comes under as well work health and safety. And then there’s marketing, employment practices.
Sandy Chong 28:36
And then we’re also very big on sustainable practices. So we have salons who’ve reached their accreditation, because in gold or silver salons, and it’s our way of recognizing that they go above and beyond when it comes to business, and taking care of their clients as well as their staff.
Bill Gasiamis 28:56
I like that. So that occupational health and safety stuff kind of trickles into the care and safety of the customer.
Sandy Chong 29:07
Absolutely, as well as our employees, we want to make sure that we’re taking good care of them.
Bill Gasiamis 29:13
I never considered that there was a possibility that somebody could get injured at a salon maybe because I only ever get to number one, I can’t ever really get cut or snipped or anything. But I imagine there are some possibilities for some serious injuries if people aren’t careful.
Sandy Chong 29:30
What I think there’s possibility for injuries in any trade if someone’s not careful, but be mindful that yes, you do have a clipper cut. However, we use chemical then we also use sharp objects as well. And there’s also the mental health side of that and our physical health. So to be a hairdresser, well then you need to be physically healthy as well. When it comes to mental health.
Sandy Chong 29:55
There’s quite a bit that you’ll hear in the media about being an accidental counsellor. So sometimes, you know, lots of clients will dump all their stuff on us, we need to make sure that our mental health is resilient. And that we do have well that we mentally well, so that we can definitely handle, I guess any situation with any client who might be telling us their issues, their problems, etc. At the end of the day, you know, we feel that our hairdressers deserve the respect from consumers or customers. But on the other hand, we also want to make sure that we are 100% Taking care of the well being of our customers as well.
Bill Gasiamis 30:40
And that brings us to this little beauty here. So I’ve had the pleasure, Sandy, of sitting in a hairdressers salon and having my hair washed just probably once or twice in my life because I went to get a haircut and I couldn’t be bothered going home and having a shower, that kind of situation.
Bill Gasiamis 31:02
And they washed my hair, it was a real treat, it was a bit of a massage, it was warm, and I walked out and I never had hair all over the place that was scratching my back and all that type of stuff. And it was quite an uncomfortable experience. But I’ve got to say that before my stroke, I never considered that there was a possibility that somebody might go to a hairdressing salon and potentially damage a carotid artery or vertebral artery, simply because of the position that their head was in.
Bill Gasiamis 31:34
I don’t believe that the design of the basins are specifically going to cause that issue, I feel like there may often be an underlying issue that people aren’t aware of the kind of just gets exacerbated. And I say that, because I’ve met people who have done damage to a carotid or vertebral artery by sneezing others by driving a car and being in a minor collision and having, you know, that whiplash movement.
Bill Gasiamis 32:05
So I don’t see that the basin is going to be like a risky place to be. But it has been known to cause a couple of issues for some people. And there’s some evidence to suggest that more should be done to support that. In your time in your time as a hairdresser. And now in your time as CEO, have you seen any of those injuries?
Sandy Chong 32:30
I don’t think that I have really seen those injuries, okay. But in my own career as in my own salon, but one thing I will say is that I think that it can contribute definitely to an injury. And in my career, where I had my hair shampooed all the time. And a shampoo experience a basin experience is meant to be quite luxurious, and you know, most of the time, and it should be it should be where you lie down, it’s your time out, it’s your escape from reality, you’ve got someone who’s giving you a lovely head massage.
Sandy Chong 33:06
In our case, we used to actually get trained our hairdressers are trained by Kinesiologist, we would do the ears the neck and everything. So she actually showed us the correct way to massage a neck. Now I have had my hair shampooed as well and had a really bad experience with someone presses the head down. And if they’re at the wrong angle, it’s incredibly painful, like really painful.
Sandy Chong 33:33
And you can have a painful neck, you know, for the rest of the week or even longer. And you need to see a physio like Catherine, or an osteo, etc. I think the one thing that I should say is that as the client, make sure you’re comfortable, make sure you do wiggle around if the if the basin is too high, too low, make sure you’re comfortable. Now a good salon really spends well on their basins, on their basins area.
Sandy Chong 34:01
And so, you know, make sure you’re comfortable, make sure that you have got padding underneath your neck. In our case, as I said, we use HeadBed for the last 10 years. And I totally and absolutely swear by it because of the fact that it was designed by a physio then what better product to put in your basin scenario. But I think from a consumers point of view, a client’s point of view, one, be comfortable, don’t lie there and and think this is really uncomfortable. Tell them and from a hairdressers point of view.
Sandy Chong 34:33
They really need to be aware that there are better techniques and massaging and making sure that the pressure is not on the neck and they’re not pushing down on the head, but they’re massaging up and taking that weight away from the neck. So I’ve I’ve actually experienced some of the most luxurious oh my God amazing, you know, I just want to purr if I could do that, and if I knew how to purr.
Sandy Chong 34:56
I would do that. When I have a beautiful basin experience. But then again, I’ve also had a painful one, which my concern is, it would lead to exactly what you’re saying, a stroke, or it could, it could almost certainly affect the neck and your neck health leading to a stroke. After the event is well, after the experience.
Bill Gasiamis 35:24
You hear, sometimes chiropractors get a big, hard rap because they do neck adjustments. And people then report that they’ve had a stroke, and they blame it on it on the chiropractor. So whatever the situation there is, I can’t imagine it’s a good experience, either for the person providing the service. And then for the person experiencing like a neck trauma or a stroke.
Health And Safety In Hairdressing Salons Including HeadBed UseBill Gasiamis 35:46
That’s the last thing that any hairdresser would want to generate or create or be responsible for creating to one of their patients. So what happens when somebody comes to you and says, I’ve got a product, there’s a possibility that this is going to make your customers experience better. Were you running these products, the HeadBed, while you were a hairdresser, in your salons?
Sandy Chong 36:11
So as soon as HeadBed was released, we embraced it immediately. And I think because I saw the value, like I saw the value in protecting our clients necks. And, you know, I think that any salon every salon, as long as the HeadBed will accommodate the shape of their basin. And I My understanding is it does for most of the most of the basins that are out there. I really do believe that every single salon should have this in place. And it’s purely comes down to work health and safety as well.
Bill Gasiamis 36:45
Yeah. What are the implications if somebody does get injured now, maybe not from the HeadBed, but from another situation? What happens? How do you manage that? As a hairdresser, and as the Council that supports hairdressers? What’s the path that people need to go down to get some kind of a resolution or an outcome.
Sandy Chong 37:06
If, we’ve got a client who had damage on their neck and it came in from a basin experience, then I think it’s part of our duty of care to do the absolute best that we can to see how we can assist and help in any way. Obviously, the first thing is to go and seek medical help. And I think that it’s in the best interest of the client, and also the hairdresser to keep in touch and not just go see you later, you know, none of us really want to do that. If we were accountable responsible for giving any client pain, we would want to just make sure that everything was okay.
Sandy Chong 37:46
And they were okay, after the visit, I think that it would not be you know, it would lack integrity. If you just sort of say goodbye, see you later and or the very best good luck. But we would hope that the client would also make sure that the salon is well informed. Now every salon should have work health and safety procedures and policies in place. Is it? You know, is it necessary to have something around the basin in your work health and safety? I think part of that is making sure that your client is comfortable that you do have a good massage technique in place and that you’re very aware of any client who is uncomfortable.
Bill Gasiamis 38:32
Yeah, I suppose it’s just really making sure that the staff understand that everybody’s neck is different, that people’s necks are different that people have a different experience. And that different sizes, shapes, heights, length, necks all change the way the client might feel when they’re getting their head washed, or a treatment put through it.
Sandy Chong 38:59
All different shapes and look at as a business owner. You know, we know what we want, we want the absolute best for every single person that walks in the door. I think where it does come undone, though, is making sure that every employee is well educated around that, and that they are always attentive when they are providing the service and that they’re not you know, they’re not unaware as like when you’re aware of something, you’re aware that you’re aware that you’re always aware of just you know, watching the body language watching for someone who screws their face up and they might be feeling a little bit uncomfortable.
Sandy Chong 39:41
So it’s important that they give 100% attention to that client who is in the basin. Look for anyone who is uncomfortable. I think that every business owner is very committed. Our challenge, of course is making sure that every employee has that commitment that understanding that training that education, and also that awareness with every single client that they take care of, as well.
Bill Gasiamis 40:09
hairdressers have public liability insurance, I imagined that this would be a sight for sore eyes for the insurer, if they were able to see that the hairdresser has gone and implemented something to minimize the risk of injury. As far as the cost is concerned, is it a, like, how good is it to be able to spend 100 bucks or there abouts to create such a massive improvement in the safety of your clients?
Sandy Chong 40:41
Well, prior to HeadBed, we would use these other foam products, and they disintegrate and crack in no time. And so with HeadBed, you just have it for years. I mean, it’s like almost a single investment and you have them forever. In fact, Catherine could correct me I think in 10 years, we might have reordered once, which is probably really bad, repeat business not very productive, you need to make them disintegrate or something you know a little bit sooner.
Sandy Chong 41:11
So it’s not great for repeat business. However, you know, if there’s 12 and a half 1000, salons in Australia, there’s a few more than that, that actually did have HeadBed, or then that would be a really great solution. On top of that 70% of our industry, you know, over 20,000 are single operators, their sole traders, they could be working from home, or they might be working in a hybrid salon.
Sandy Chong 41:34
And when you look at the amount of hairdressers that are out there, if they really considered putting HeadBed in then you know, potentially, you know, you will be looking at 20,000 of them out there in the industry. Most salons have between three and five basins some have two lots of five basins.
Sandy Chong 41:53
And, really HeadBed should be in every one of them because it is part of a work health and safety strategy and policy and procedure. And, you know, for the safety again, and also for your duty of care. I think it’s something that should be seriously considered by every hairdresser in every salon in Australia and including the barbers as well.
Bill Gasiamis 42:17
Yeah, the barbers they’re starting to really take off in big numbers. Now you see barbers everywhere. I was wondering like, how would it go if a client turned up with a HeadBed and went to their salon with it? Like if I bought one, and went to my salon and said, before you wash my hair? Can you please put this on the basin? And how do you think that will go down?
Sandy Chong 42:42
I think any hairdresser would accommodate just make sure that it actually fits their basin though who might need to go in prior to that, okay, and just check that it does check because basins are sort of sometimes they can be strange shapes. And in fact, the one that I find the most difficult has a very wide neck shape. So it’s very difficult to not wet the neck and wet the clothes or whatever. And so you need to really make sure that the HeadBed does fit the basin. But I don’t think any hairdresser would not accommodate that kind of request. In fact, it’s probably not advisable for them to not accommodate, because if something did go wrong, then they’re certainly liable.
Bill Gasiamis 43:31
Yeah. Well, thank you so much for joining us on the podcast. And you know that you’ve got lots of stuff to do. So, at this point, we’ll let you go back to your day.
Sandy Chong 43:42
Thank you. Thank you for having me. And I just want to say I hope that you’re well now and also congratulations, Catherine on you know, designing such a brilliant idea for the hairdressing industry and also our consumers. It’s really important. So congratulations, and thanks again. All
Bill Gasiamis 44:00
Alright, Catherine. So that was an amazing conversation with Sandy.
Catherine Randabel 44:05
It really was and I am just so so grateful for the Australian Hairdressing Council, most of their members are well equipped now, we all have their HeadBeds in their salon. But like Sandy was saying, there’s many many salons out there. And home salons, people work from home. And the more they know about the BeadBed, the more they can certainly invest in being properly equipped for the basins.
Bill Gasiamis 44:29
I don’t often think about occupational health and safety when I go to a hairdresser and that’s the interesting part of the conversation that we had is that, you know, there’s a duty of care. People at the hairdressing salons are thinking of things that I wasn’t ever aware of that I’m not thinking of when I go to a hairdresser just always thinking about is there an appointment.
Bill Gasiamis 44:50
Do I have to make an appointment can I just come and sit down or what the deal is and then I want to get my hair cut and then I want to get out of there. Most of the time. I want to get out of there because I want to go home wash my hair and get rid of all the junk out of my hair. And I very rarely, like I said to Sandy I very rarely sort of said, can you please wash my hair for me because I don’t know, it’s just something I don’t do.
Improving hairdressing experience HeadBedBill Gasiamis 45:13
And I don’t think it was an uncomfortable experience, the times that I did have my hair washed, but I am pretty certain it wasn’t fun. Like, I don’t think I could have sat there for ages and enjoyed that experience, and especially what you said earlier in our conversation with the fact that the head becomes four times heavier in that bent back position. That’s pretty crazy. And now that I’ve had a brain injury, I don’t want to have any more.
Catherine Randabel 45:51
When you think about it, you got to number one hair cut most women that much longer hair than that. And they spend a lot longer at the basin, except that there’s different colors that are put through the hair. So it’s there’s foils, there’s different colors, there’s rinsing several times, there’s shampooing several times. So it takes it takes a long time being in that head back bent back position, at the basin with all the pressure against the back of the neck, with all the muscles of the neck holding on for dear life.
Catherine Randabel 46:23
And very often ladies that to like slide down the chair to try and straighten up their neck and their head because it gets uncomfortable, and the hairdresser can’t do their job properly, then they go Come back, come back into the basin, put your head back. And so it’s that constant issue of good body alignment. Because most hairdressers chairs and basins and adapt, they tilt a bit and the chair can go up a little bit. But it was still not enough, because the head was just hanging back into the basin.
Bill Gasiamis 46:56
Most of the chairs that I’ve seen in front of basins are pretty dodgy chairs, you know, they’re just the, the chair that they got from down the road or the one that’s been left over from wherever and it was never adjustable. It’s always just slid in front of the sink. And then you hope for the best you hope to sort of it fits one one size fits all and you hope that you’re going to be able to get your head in there.
Catherine Randabel 47:18
More and more like Sandy was saying good salons have got a proper basin and chair setup. So it’s all electric, and it’s reclines and all sorts. So most salons are aiming towards that because they know clients have to be comfortable at the basin. So now for just a few $100 A tiny little safety device can completely change the experience and make their clients super comfortable.
Bill Gasiamis 47:44
Yeah, so it’s totally legitimate when my wife was going to the hairdresser. And I look at my clock, you know, three hours later, where is she? So it’s all legitimate because all those steps they take time washing etc.
Catherine Randabel 48:02
Only know it’s a quite an involved process. And hairdressers are very, very proud of their trade and very caring people. And once their client gets in the basins, they know, it’s not usually a quite a comfortable place. And most of them try and take great care. But now with a HeadBed on their basin, it should make their life so much easier as well. So it’s a win win for all.
Bill Gasiamis 48:26
It’s a win win, win win win win win. Can you tell me now where would somebody go and have a look at the product online? Where would they be able to buy it from? We will talk about that right now. But for anyone watching and listening, we are going to have all those things in the show notes and in the YouTube description.
Bill Gasiamis 48:44
So if somebody is very keen to have a look and to buy a product and take it to the hairdresser, etc, you’ll be able to find that easily through the show notes and also through the YouTube description. But just for the record, Catherine, where would people go?
Catherine Randabel 49:02
The easiest one is headbed.com.au because we’re an Australian company, and then on there and our Facebook page HeadBed the Facebook page, they will have all the information needed to contact our various distributors or even buy online directly or even contact me email me I am so happy to talk and discuss and explain was great pleasure.
Bill Gasiamis 49:34
We’re going to have all of the contact details in the show notes or the email address. I won’t put that in the show notes. But if somebody reaches out directly to me through recoveryafterstroke.com/contact or asks for it on the YouTube comments. What I’ll do is I will pass on Catherine’s email address just so that we can keep it offline and so that we don’t get spam coming through to you for all sorts of weird things.
Catherine Randabel 50:08
Also on our website, and Facebook they will have my contact details as well.
Bill Gasiamis 50:11
Even better, even better all right, fantastic. Well, Catherine, thank you so much for reaching out, I really appreciate it for sharing your product for sending me one, my wife is going to get one now. And I’m going to sort of try and convince her to take it to the salon, from a comfort perspective, more than anything.
Bill Gasiamis 50:33
Because I think that if she did take that to the salon, from a comfort perspective, that her hairdresser would implement that, before I go, I just realized I’ve got these wedges here that we picked up a couple of times, like, so what’s the point of this? What am I supposed to do with this wedge?
Catherine Randabel 50:52
The wedge fits into the head platform, like a little lego block. And it is designed to make sure that it braces against the inside of the basin. So if my hand is the basin, the little wedge braces against the inside of the basin and the weight of the head there is supported properly.
Bill Gasiamis 51:16
And this is where the head rests?
Catherine Randabel 51:20
Tthe head rests on that little platform here, and the wedge sits inside the basin. That’s right, exactly right. And the little suction cup stick underneath the basin. So the HeadBed doesn’t move on the neck curve. And there’s three levels, three heights of adapters.
Catherine Randabel 51:39
So if a person wants the head further back, they can just quickly put their finger underneath and pull out the little adapter wedge and put a smaller one in, just like so. And it just takes 10 seconds to do and the hairdresser can carry on with their job. So they are designed with great care and attention to the needs of the hairdresser. But more so the needs of the client having their hair washed.
Bill Gasiamis 52:05
How much does it weigh, because people will travel with this right? But 400 grams, okay, so it doesn’t add too much to the weight of your carry-on. 380
Catherine Randabel 52:16
To 400 grams, not even half a kilo. Yep.
Bill Gasiamis 52:20
Yeah. Awesome. Thank you so much. This is just the kind of thing that I think stroke survivors would love to find out about, I really appreciate your time and good luck with the with the product and with the new distributors that you have in the United States.
Catherine Randabel 52:38
Indeed, we’re looking forward to growing and making sure that most salon basins are well-equipped.
Bill Gasiamis 52:45
Well thank you for tuning in to today’s episode where we explored the benefits of HeadBed. An innovative head and neck support cushion designed to enhance salon comfort and prevent neck injuries.
Bill Gasiamis 52:58
Whether you’re a salon professional or someone looking to improve your hair-washing experience. The HeadBed is a game changer in providing ergonomic support and ensuring safety during treatments.
Bill Gasiamis 53:10
For more information on how the HeadBed can revolutionize your salon experience and where you can purchase your own visit Headbed’s official website. All the links will be available a recoveryafterstroke.com/episodes and in the show notes.
Bill Gasiamis 53:27
Stay up to date with the latest news and benefits by following HeadBed on their social media channels. And remember taking care of your neck and ensuring comfort during salon visits is crucial.
Bill Gasiamis 53:39
With the HeadBed you can relax and enjoy your treatments without worrying about discomfort or injury. Thanks again for listening, and we hope you found this information helpful.
Intro 53:49
Importantly, we present many podcast designed to give you an insight and understanding into the experiences of other individuals opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.
Intro 54:07
All content on this website at any length blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis.
Intro 54:19
The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives.
Intro 54:35
Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or is a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional your doctor or your rehabilitation program based on our content.
Intro 54:51
If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency, or think you might be, call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.
Intro 55:08
Medical information changes constantly. While we aim to provide current quality information and our content, we did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with the links we provide however, third-party links from our website are followed at your own risk and we are not responsible for any information you find there.
The post HeadBed: Preventing Beauty Parlor Stroke Syndrome appeared first on Recovery After Stroke.
Shane Duffiney was in a car crash that damaged the blood vessels in his neck causing an ischemic stroke at 42 years of age.
Highlights:
00:00 Introduction
01:25 Stroke after whiplash injury
08:26 Misdiagnosis of stroke and TPA shot
19:35 Managing stroke recovery with a slow and steady approach
27:29 Post-Stroke Deficits
33:18 Personal growth and overcoming emotional issues
45:23 Healing journey after stroke and writing a book
55:04 Improving the quality of life for people with neurological conditions
1:19:30 The hardest thing about the stroke
1:24:25 Lessons from the stroke
1:26:20 A message for other stroke survivors
Transcript:
Introduction – Shane Duffiney
Bill Gasiamis 0:00
Hello everyone. Welcome back to another episode of the Recovery after Stroke podcast. My guest today is Shane Duffiney, who contacted me initially to thank me for the podcast and tell me how it has helped him navigate recovery after he experienced an ischemic stroke at age 42.
Bill Gasiamis 0:19
His stroke was caused by damage sustained to one of his blood vessels in his neck several months after being involved in a motor vehicle collision. Today, he joins me to share his stroke recovery story. Now just before we dive into the interview, I’d like to take a moment to mention my book The Unexpected Way, That A Stroke Became The Best Thing That Happened.
Bill Gasiamis 0:38
10 tools for recovery and personal transformation. It’s a collection of inspiring stories from 10 stroke survivors, showcasing their incredible journey from adversity to personal growth, covering everything from nutrition, and exercise to handling the emotional challenges. This book is a beacon of hope for those on the road to recovery. For more information, you can check out recoveryafterstroke.com/book or simply search by name Bill Gasiamis on Amazon, and now it’s on with the show. Shane Duffiney, welcome to the podcast.
Shane Duffiney 1:15
Hey, thank you, Bill, I appreciate it. It’s good to be here.
Bill Gasiamis 1:19
It is really good to have you here. Thank you. Tell me a little bit about what happened to you, Shane.
Stroke after a whiplash injuryShane Duffiney 1:25
Ah, you know, the short version, I’m at a relatively young age of I think I was like 42 At the time I had a stroke happen. It was caused initially it was caused by a car wreck, somebody decided they didn’t want to pay attention on the highway and ran into my car and I guess the the whiplash from the wreck caused some internal arterial damage. It went undiscovered and in my understanding without using big medical words, arteries started building up a scab.
Shane Duffiney 2:11
Five months later, the scab broke free and got stuck as it was flowing through, went up through my brain, and then came back down and got stuck on the way back down. And that’s as pretty far as my medical knowledge goes about strokes at the time. And so it’s a little bit better now. And so I had a complete ischemic stroke. I was just driving me some friends at seven o’clock at night. And the world fell out from underneath me.
Bill Gasiamis 2:49
Was there anyone injured after the collision?
Shane Duffiney 2:55
No, we all walked away and nobody was injured. I was driving a big old truck and I don’t know what kind of car he was driving because we couldn’t tell I couldn’t tell what it was his car was totaled. So safety gear works great for theirs I know I have my seatbelt on. It’s just something that happens actually, according to the doctors that happens. Like the damage from the whiplash happens to a small percentage of people.
Shane Duffiney 3:23
Specifically, a small percentage of people have their arteries flowing through the spine. But at one point for a small percentage of people, the artery pops out from the spinal column, it was like this little loop and it goes back down. You probably know all about this.
Bill Gasiamis 3:42
Not about that one specifically.
Shane Duffiney 3:44
Right. And so for those that small percentage of people that have that very minor genetic defect where the artery comes out, it loops around the spine and goes back into the spine and so if your neck is pushed just far enough, just quickly enough instead of like when the spine is like starting to pinch on that artery now since it’s outside of the spinal column.
Shane Duffiney 4:13
Normally it would just slightly push it out of the way the artery either way, but it does it too quickly, it’ll pinch hard enough that it will cut the artery wall the internal wall because there are layers of the wall it will cut the internal layer of the wall and that’s where the whole dividing us into self-repair mode and builds up a scab and tries to repair that. In my case, it didn’t repair itself but it did break free and get stuck and that turned into a stroke for me.
Shane Duffiney 4:52
And yeah, I was 42 years old, had had no cholesterol problems, and had no high blood pressure, which was shocking to the doctors when I walked in, and somehow I walked into the hospital because I was like, I think I’m dying. And there happened to be an emergency room, three minutes down the road, and it was like, okay, I can wait 45 minutes for the ambulance or I can see if I can make it three minutes down the road.
Shane Duffiney 5:18
And the doctors were like, you can’t be having a stroke, you have no your foot, you’re not old enough, I mean, you’re kind of fat but you have no cholesterol, like zero cholesterol, they tested me three times. And you have no high blood pressure. And it was the nurse, the nurse was like he is having a stroke, we need to put him in the MRI machine. And she insisted on it. She saved my life.
Bill Gasiamis 5:52
How long was the duration after the collision and the onset of the stroke?
Shane Duffiney 6:02
That was five months, it was five months. The neurologist said that’s typical. They said they said when somebody has these conditions to create a stroke, it takes about three to five months for that back to layman’s terms for the scab to break it’s like a six-syllable word they use for it, but it takes about three to five months for the scan to break free. And it either just continues flowing through the system and passes through and doesn’t get stuck.
Shane Duffiney 6:38
Or it gets stuck. And, they said it’s a one-time occurrence. Like even though like in my case, the arterial tear didn’t heal, I still have the arterial tear. He said I swear this is like sci-fi. He said, my body my brain know that in the process of trying to heal the artery, and almost killed itself. And so it will not try to heal the artery again, it will not try to build up a scab on that artery again, it’s a specific type of white blood cell that it releases to specifically heal arteries.
Shane Duffiney 7:18
And then he said it would not do that again because it knows that it almost killed it. After all, I was like, wait a minute, what if it’s still there? What if it tries to build another scab and that scab is gonna break off eventually anyway, and it’s gonna get stuck right behind the other one? He was like, no it won’t happen. He said the body is like, the brain is very self-preserving. It will not do that again.
Bill Gasiamis 7:43
That is amazing that it does that. It’s amazing. The body does what it does, regardless, of all the things that it does, but then to have that intelligence to go. No, we tried that that didn’t work. Let’s move on.
Shane Duffiney 8:03
That’s very cognitive thought that’s like, right, you know, that’s like decision trees. Like, like, and you’re like, wait a minute, we’ll move to somewhere in there. The brain just does that. Like the body just does that figure that out? And like, bad, bad plan. Don’t do that again.
Misdiagnosis of stroke and TPA shot for Shane DuffineyBill Gasiamis 8:26
I love that idea. I love that it is but how did the medical team resolve that issue? What did they do to open up the blood flow again?
Shane Duffiney 8:37
So once it was identified and thank God they did, even after they had the imagery back I walked into a training hospital. So they had a lot of residents on staff and that’s who was attending me. So it’s like no fault to the medical system, or the doctors.
Shane Duffiney 9:01
They just had only been like a year in the field. Right. You know, and, whereas the nurse had been doing it for 15 years, 14 years, and she said her father had just had a stroke two months before so she was very familiar with all the symptoms.
Shane Duffiney 9:19
But, yeah, even after they got the imagery back, the doctor was like, this is just a headache. This shadowing and your brain is just a headache. And they sent it off radiology and the nurse was like, No way they’ll get back with us in three minutes and tell us it’s a stroke.
Shane Duffiney 9:36
But they resolved it as best they could. They did a TPA shot. So I’m sure most of you are familiar with that. But for people who might not be like the TPA shot as my understanding of it is it’s like a supped-up blood thinner with a whole bunch of stuff in there to try to break up the clot and try to try to get your body to want to flow blood.
Shane Duffiney 10:07
And it’s actually in Please Don’t Ever Limit Anybody you gotta at least here you have to say yes to if you’re conscious, you have to say yes, I want the shot. And so they were like, Hey, do you want this shot? And again, back to the doctor not having a lot of experience was like, Hey, I’m supposed to ask you they told me I need to ask you if you want this shot, and I was like what shot?
Shane Duffiney 10:35
You know, what does it do? And they she’s like, well, it makes you bleed and it makes your blood flow faster and you’ll bleed. And that’s like, I don’t want to bleed. I don’t feel good right now. I don’t want to be bleeding too. And she was like, No, you want this, it’s fine.
Shane Duffiney 10:53
It’s like what like, doesn’t sound like it’s going to be fine. And by the way, like it’s not normal too that’s another thing. It wasn’t normal for somebody to be very cognizant of what’s going on around them while they’re having a stroke. And so that was another reason why, you know, it was misdiagnosed early.
Shane Duffiney 11:15
But you know, and finally, the nurse was like, look like I hate doctor I think the doctor is calling right now as they want you to answer a question. So the intern or the resident left, the resident left the room, and like the nurse just snatched me up off his tiny little nurse snatched my massive frame off the table was like she goes, what do you do for a living?
Shane Duffiney 11:41
I was like, I am a business development manager for I like, I don’t know, I throw out some big fancy likeness. And she goes, Oh, so you walk and talk for a living? Right? And I was like, Yeah, I do. And she’s like, well, you won’t be able to do that tomorrow if you don’t take the shot.
Shane Duffiney 11:55
And it like dawned on me like I understood all of a sudden where the urgency the nurse just kept like, like pushing urgency on the doctor pushing urgency on the rest of the nursing staff. And it just dawned on me like, Oh, crap, like there’s a time limit to that shot.
Shane Duffiney 12:12
So yeah, at that point, like she’s trying to hold me back because I’m dragging her out of the room. She won’t let go of me. I’m screaming out the door. Like, give me a shot. But yeah, so that was the TPA shot, and it didn’t dissolve the clot. To your question, it didn’t dissolve the clot, which is one of the things they hope it does.
Shane Duffiney 12:36
They believe later on, they kind of guest it. That’s another back to magic right back to some science fiction stuff. My body my artery built a brand new blood vessel that bridged around the blockage.
Shane Duffiney 12:57
So like the blood vessel, like so, and he could see it, he said, It looks like it built the bridge to go behind the clot the blockage, and it got went and attached it built a bridge to a separate artery or vein that was running next to that artery.
Shane Duffiney 13:18
And he said it’s discharging so it’s flowing around the blockage and it discharges on the other side of the blockage. And that again, I was like, that’s like some alien stuff or anything. It’s like some, he said, that’s very common. And actually, I’ve talked to some of you that have heart attacks and had like, you know, they said that that’s their hearts have done that too and he said it was just so either way.
Shane Duffiney 13:46
So that’s what it ended up doing. And they never did or able to dissolve the clot I still have the clot in my neck is still there. But it’s bypassing right there’s there’s enough flow going around the clot and he said maybe it’s also it opened up the vessel enough that their flow or not just the bridge, but it’s also flowing he said Either way, you’re getting enough blood to your brain that you’re not dying.
Shane Duffiney 14:15
And they decided not to dig it out. He asked where that stuck out in your head. It’s gonna if we try to dig that out, we’re gonna do more damage to you. And then of course, I was like, I don’t know, man, I kind of went I don’t like the thought of this thing here. Man. But yeah, so. So it sounds like
Bill Gasiamis 14:36
I made the right decisions. I mean, I might have fumbled their way around explaining things to you and discovering what the issue was, but it sounds like everything else was probably done correctly and in the right way. And there’s little, you know, as less invasive procedure as possible was done.
Bill Gasiamis 14:57
And that seems I’ve got a great rule what were your, what were your symptoms of strokes? Or what did you notice? WherWhatdo you think? I need to get to the hospital. What were the things that were obvious to you that kind of like, something’s not right?
Shane Duffiney 15:15
Great question. So I didn’t know anything about stop or whatever, I guess I’ve missed all that in school missed the sign, because they’re all over the place, right? The I Am I so for me, like, initially, I thought, like the world just dropped out. Have you ever been on a roller coaster when those roller coasters where just like take you high?
Shane Duffiney 15:39
And they just let you go? That happened, like immediately, and it wouldn’t go away. It wouldn’t go away in and it just like, exponentially got worse. By you know, by the second it was like every 10 seconds it got like 1% More where it just kept getting worse and worse and worse.
Shane Duffiney 16:03
And then I was like, okay, something’s wrong. And of course, I’m like, am I having a heart attack? I know. And I was like because there’s no pain here. And I was like, am I having a stroke? And, as I was thinking about this half of my fate, my body got numb, right? That’s about all I knew. And the best I had. And so then I start kind of poking myself and scratching my face.
Shane Duffiney 16:29
Right? It was weird. Like, my forehead had gotten the left side of my forehead had gotten my left calf had gotten right, but you know, and so it wasn’t, it was all on one side of the body. But it wasn’t the whole side of the body. For me at least. Like I think like, let my left lip go.
Shane Duffiney 16:50
And I was just like, okay, stroke, probably. But all I knew was I mean, I don’t know, I’ve lived a little bit of a hard life. And it was the first time I’d almost died. But I was like, so I was like, Oh, you’re dying.
Shane Duffiney 17:05
You’re dying right now. And I just kept kind of feeling like I was going in and out of consciousness. And I was just I felt like I was just always on the edge of going out of consciousness and very abruptly, right? It wasn’t a gradual, like, I’m falling asleep kind of thing. It was very abrupt.
Bill Gasiamis 17:22
Was that legitimate? What you said was, accurate did you do it? You’ve nearly died before. And therefore, if you’ve nearly died you knew what that felt like, and therefore you recognize this different version, but felt like your life was on the line?
Shane Duffiney 17:41
Yeah, definitely. I’ve had jobs where I was an explosives ordinance person, like in the private sector. And you know, I got blown up once by accident, right? Fortunately, usually, if you get blown up by accident, they try to find enough for you to put in a box. And I didn’t. That wasn’t my case.
Shane Duffiney 18:05
But it was definitely like, strangely, like the movies where you’re like, the person’s like on the ground, and everything’s like, whoa, so, so I’m definitely like that. It’s been a few other times, that kind of got blown up again, in a different job. But, but is one of those we’re all about to die, kind of like where everything kind of slows down for you.
Shane Duffiney 18:27
And like, if you make the wrong thing if you do the wrong thing. And the neck, like, every second has to be done perfectly, where everybody is going to die, or at least you are and you know, I’ve been in the oil field for also for a while. And so there was, you know, going in that and you know, I’ve been homeless before as a kid and I’ve can’t I left school, I left home like 14 It was just a lot safer to not be home.
Shane Duffiney 18:58
So I left and so it was a little bit of a little bit of a rough. I guess I didn’t even really think about it as rough in a rough life until somebody was telling me like Shane, that’s not normal recently. They were like, That’s not normal.
Shane Duffiney 19:08
I was like, Oh, no. And yeah, so then you got like starvation that comes with that and like but those are the top three, three things other than the stroke I can think about top my head where I have almost been killed.
Bill Gasiamis 19:24
Spidey senses, gut instinct, stuff kicking in and going, Hey, you’ve been in a similar situation before you need to take evasive action.
Shane Duffiney managing stroke recovery with a slow and steady approach
Shane Duffiney 19:35
And the big difference. There, you know, for the stroke was like what the other ones? You know, you’re trying to make yourself dump more adrenaline, right? Yeah. And in times like that, you’re too you’re trying to like whatever like you’re passing out and you’re like slapping yourself to like, you know, maybe and you know, to make sure you don’t lose consciousness.
Shane Duffiney 20:00
In this case, there was a very, very different in the sense of like, there was an eternal thing wrong and I was afraid like I could feel I was afraid with this whole, like, the bottom dropping out feeling. I didn’t want to start trying to get my blood to flow harder, right I just something just like back to the spidey sense.
Shane Duffiney 20:23
Versus the other times where it was just like, yeah, as much as we can get it to make it through the next three minutes. Right. Whereas on the other in this sense, it was just like, go slow. Yeah, very slow very patiently. Like I was in my car was driving, I was driving my truck. And that was just like, I had my I had one hand on the door handle.
Shane Duffiney 20:46
And the other hand, like between the shifter to throw it in parks, as far as like, if you start to go out completely fall out of the truck into the street, somebody can find you, right, like, and I was trying not. And I was intentionally trying not to psych myself up because I knew something was wrong.
Shane Duffiney 21:02
It was like, it was like every heartbeat, that’s when it would get worse. Right? I think that’s probably why I was like, don’t try to psych yourself up. Don’t try to get your blood flowing.
Shane Duffiney 21:11
Because it’s like, there was like every heartbeat I was like, Oh, crap, I start blacking out. And remember that now, but yeah, I was just like, so it was like three minutes getting down the road, like, if you start going out completely try to fall into the street. And hopefully, your truck doesn’t hit anybody as it drives.
Intro 21:32
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. How long will it take to recover? Will I recover? What things should I avoid? In case I make matters worse, doctors will explain things. But, you’ve if never had a stroke before, you probably don’t know what questions to ask.
Intro 21:56
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called Seven Questions to Ask Your Doctor about your Stroke.
Intro 22:15
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition. And they’ll help you take a more active role in your recovery. Head to the website. Now, recoverafterstroke.com and download the guide. It’s free.
Bill Gasiamis 22:34
I love the idea that you’re able to kind of be cognitively capable enough to make all these really important decisions slow yourself down. In fact, by slowing yourself down, you probably made it easier for your blood to receive oxygen.
Bill Gasiamis 22:51
Instead of constricting your blood vessels going into stress and all that kind of stuff, your blood was able to flow and still support the rest of the brain. Your heart was able to do its job, you know, just normally and calmly. Probably didn’t spike adrenaline or cortisol or anything like that.
Bill Gasiamis 23:09
You just, you know went through nice and steady. And that’s probably the best thing to do you go to the hospital. And when you got there, what did you say to them? Other than did you say I’m dying? Or did you say I’m having a stroke? Or what did you say?
Shane Duffiney 23:29
Like I was like, Okay, this is kind of embarrassing, because I was just stupid really, at this point. I like the stupid male ego thing kicking in, right? Like I, I got this, you know, so I didn’t know that. At least here. At emergency rooms, you can pull your vehicle right up to the emergency room door and jump out right and they’ll valet Park. I didn’t know that.
Shane Duffiney 23:53
So like I go find the parking deck. I drove by the door, right? And I’m even thinking you should probably just park your car right here in the middle of the street and be like, forget it. Like, you know you’ll you’ll find it later. And I don’t know and I get out in the parking deck and I was like I need to figure out how to get in like I told him at one point I make sure I find somebody my head right and I’m moving slowly.
Shane Duffiney 24:18
Very aware. I’m dying. And I’m still just like I got this in like a dumbass and. And I was like, Maybe I should look for somebody that asked for some help. And it is just like this. I told myself in my head. I said if you ended up dying in the parking lot because you didn’t ask for help.
Shane Duffiney 24:40
You’re an idiot. And I was like, Oh God, and that’s what I just saw the first door I saw and opened it and walked in and there was this long high hallway which was a very surreal walk for me to go down the hallway to find somebody you know very much those very classic like life flashing before your eyes like, oh gosh, I, you know, there’s some things I need to do better with my life kind of moments.
Shane Duffiney 25:07
And some things I need to put more value in kind of moments. And if I found somebody I was like, Is this the emergency room? And they were like, No, it’s not you got to go out that door, go back down the hallway, take a ride, go out the door, and go around the corner and you’ll find the door.
Shane Duffiney 25:23
And I was like, Okay, thank you. And I’m like, slowly turning, walking and somebody hollered out, do you need help? And I was like, Yeah, I think I’m dying right now. Back to just being stupid. Like, don’t ask, I was very, very silly, but thank God, the ladies are like, Do you need help?
Shane Duffiney 25:45
And so then they brought me out a wheelchair, and then they will meet, wheeled me into the ER, and that’s in the nurse was standing in the waiting room. And she immediately went, you’re having a stroke? And, Kasey, saved my life so thank you, Kasey.
Bill Gasiamis 26:05
How long were you in hospital?
Shane Duffiney 26:08
Three days, that weekend, three days, they, once they diagnosed me and shot me up with the TPA shot. I didn’t know this. But after you take the TPA shot, they don’t let you sleep. Because it can kill you. And they need to make sure it’s not burning up your brain. Which is why there’s a time limit. Just again, you probably know this, but other people might know there’s a time limit.
Shane Duffiney 26:35
They, wouldn’t give it to me after two hours, which is you know what, the nurse was yelling at me when she pulled me up off the table. And I was like, well, I’ll just wait until tomorrow and see about I think it over tonight. She was like No, they won’t give it to you tomorrow.
Shane Duffiney 26:48
They’ll either give it to you within the next 40 minutes. Or they won’t give it to you at all. And so I’ve been awake all day till seven o’clock now it’s like almost nine o’clock at night. And they’re like, Okay, now you’re gonna put they just put me in the I was there the whole weekend.
Shane Duffiney 27:04
They stuck me in the ICU for the rest of the night for the rest of the weekend. And they kept me away. Because this lady’s in charge of the ICU they slap this slap the shit out of me. Like I wake up, I wake back up I go my kid, you know, I guess they were saying hey, they’re calling Mr. Daphne a lot that was was was it a weekend?
Post-Stroke Deficits of Shane DuffineyBill Gasiamis 27:30
And when you left the hospital, what did you leave with as far as deficits are concerned?
Shane Duffiney 27:38
I was blessed. I was blessed. You know, I have a friend and she had suffered brain damage because she worked in a prison and an inmate attacked her and she had some brain damage. And she was like, you know, she told me she was like, you’re gonna go to the neurologist she visited me while I was in the hospital that weekend.
Shane Duffiney 28:06
She said have you thought about what it’s going to be like when you do your follow-up with a neurologist? And I was like no, and then she was like that waiting room is pretty rough. And I understand what she means now. And how lucky I was to the discharged ICU doctor or the emergency room ICU doctor you know, he discharged me himself personally.
Shane Duffiney 28:31
And he was like, you know, we don’t normally have somebody he said I wanted to personally discharge you because I don’t normally get to see somebody come in with a stroke and then walk out of here in better condition than they came in here with and, and I understand that now since I’ve sat in the waiting room.
Shane Duffiney 28:53
You know, all that being said though, I still had to learn how to walk and talk again, I didn’t have a like anything that resembled the world. I just had Aspasia so I had to learn how to do you know think I had to learn how to process information again and like formulate full cognitive sentences and ideas and get those out because like you start my brain would just stop the process of getting it out my mouth.
Shane Duffiney 29:24
And anything that that involved the multi-sensory anything like looking and hearing at the same time or like petting my cat and listening at the same time, like I would immediately basically you know, I would have results like like having a concussion-like very dizzy very to the point if I keep doing it, I start getting nauseous and fall and start throwing up.
Shane Duffiney 29:51
And then so yeah, I had to do vestibular therapy because I couldn’t I couldn’t walk very well. It took me five years. It took me five months to be able to walk and talk at the same time. I’m again. And to this day, I still have headaches, you know, I had the pain for the next week was just intense.
Shane Duffiney 30:09
And if you think you can’t sleep with the most intense pain in the world, yes, your body will shut down just long enough for you to rest up and wake back up. So, thankfully that level of pain is gone, but I do have long-term headaches, I always have headaches.
Shane Duffiney 30:28
They’ve gotten me on a medication management for that very ended up being a very low cost. So just got to make sure I take it to go to bed. If I don’t, I’ll read it tomorrow. But yeah, other than that back to work, fully functional. But on yet longer road, I learned how to walk and talk again, at the same time, at least.
Bill Gasiamis 30:54
You said earlier that you’ve almost come close to death a few times. But sounds like this time. It’s impacted you differently, there seems to be a little more of an emotional or mental impact. Like and I’m not talking about cognitive, I’m talking about psychological impact. Is that accurate? Or what’s going on there?
Shane Duffiney 31:21
Yeah, maybe you can relate to this, I was reading some of your stuff and the title of your book, or at least the first one. And I probably like I thought, at least, I feel I still feel maybe I am I probably like the only person in the history of the world that, like, was so thankful he had a stroke, right?
Shane Duffiney 31:44
You know, cuz I mean, I think there’s a lot of other ways to have a midlife crisis, you could do it without having a stroke. But for me, it took a stroke. I, you know, I was a very ridiculously driven person. Like I said, I left home at 14, I had nothing my whole life for a long time.
Shane Duffiney 32:13
And at some point, like in my late 20s, I just kind of was like, Okay, you’re gonna change everything. And I became very obsessed with finance and business. And, you know, I went from being the guy who sweeps the floor at the company I work for to being in charge of the northeast area, in Canadian business development.
Shane Duffiney 32:36
And, and it was just like, so very driven, you know, went from nothing to financially nothing to beat, okay, you know, being pretty okay, and just learning and to the point where nobody wanted to be around me anymore. Except for the business people.
Shane Duffiney 32:56
None of my friends, none of my family, my family was like, Dude, you know, like, we don’t want you to come over for Christmas, all you want to do is talk about work, you know, and then they’re not being mean. But just to give you an idea of, how difficult it was for me to be human around other people.
Personal growth and overcoming emotional issuesBill Gasiamis 33:18
You were unknowingly kind of like, you just shop talk all the time all the time, yeah, it was your identity, it sounds like it was ingrained in you. And it probably gave you a lot of safety because we’re going from homeless to having financial freedom. And being able to put a roof over your head is a really important thing for you.
Bill Gasiamis 33:44
Because you didn’t have that now you have that you know what it’s like to have it, you’d rather have it and then it’s like, I’m gonna do everything I can to keep having it and dedicate your life to it. And as a result of that, you alienate other people, because you can’t relate to them, and they can’t relate to you. And they’re like, chill out, and you’re like, No, we’ve got to keep going and keep doing this.
Shane Duffiney 34:08
And to be honest, like, I knew it, and I didn’t want to be that way anymore. I didn’t want to keep losing loves in my life, and, you know, good people who care about me, and I care about them. Trying to get away from me, right, you know, I knew it was going on in my personal life, and I couldn’t stop it.
Shane Duffiney 34:36
And, you know, I tell the story. You know, I remember getting down I have a bay window at my house and we were getting out three days before the stroke. I got down on my knees and I just begged God and just made this it was like an addiction was totally like an addiction. And you’re very accurate. Like all the introspection I’ve had these past three years.
Shane Duffiney 34:55
I agree with everything you said about why we’re in some of that room. cause was coming from that I remember like, like, on my hands and knees praying like God, please, I cannot on my own make this stop, make this stop.
Shane Duffiney 35:10
And I remember I sat down right after that in a chair. And I thought, Man, how stubborn Are you? I thought how hard Is God gonna lop you upside ahead to get it through? And I was like I’m fixing to have a heart attack, I’m thinking three days later I had a stroke.
Bill Gasiamis 35:26
I couldn’t relate to that completely. Because I would have described myself as somebody who was a headcase totally in my head over, you know, overthinking thinking that my head is going to resolve all the problems like your cognitive brain can’t resolve emotional problems.
Bill Gasiamis 35:44
Your cognitive brain can’t resolve whether or not you’ve got the guts to make a hard life decision or an important life decision, you know, you have got to have the guts to do that. And for emotional problems, you got to have the heart to do that, you know, you got to be able to go where it’s painful and make emotional decisions, right? And I always thought my head was probably overdoing.
Bill Gasiamis 36:11
It took all the tasks on and it was overruling my head and was overruling my gut instinct, right? And I couldn’t break out of it. And when my head had the two first blades, I felt like it had gone offline completely.
Bill Gasiamis 36:29
And spaced out like in a different timezone in a different you know, when, when a theory warp, like I don’t know, what it was, was just out of the out of this world is something completely different.
Bill Gasiamis 36:44
And going completely offline, meant that my gut instinct in my heart was sort of starting to come forward and start to express themselves and like, say, alright, now here’s our opportunity to get back some of our power from the head.
Bill Gasiamis 36:58
And it’s like, it was such a blessing because I had things I needed to fix and resolve, especially personal problems that I had, that were minor in comparison, some other people but important with important people like my kids, or my wife, you know, where I was a complete headcase give them a hard time over everything all the time, for no reason.
Bill Gasiamis 37:22
Come home and look for problems and started being angry and yelling, and all that kind of junk. My kids were teenagers, right? And I could see, I knew that it was going to create a divide between us.
Bill Gasiamis 37:35
And I had no idea how to change myself, you know how to stop being the idiot that always found myself in the same place all the time causing the same, like, irritation in the family. And when the head switched off, I was able to address those issues. And it was a big blessing, like, it was hard.
Bill Gasiamis 38:02
And I didn’t know if I was going to survive. I didn’t know if I was going to be able to ever work again to make money or any of that stuff were so many uncertainties, but there was one certainty, and that was that I was going to be able to address all the emotional stuff that I needed to address.
Shane Duffiney 38:19
Well, that’s a beautiful story, but just to get a very great summary to get across and express to me. That journey it sucks to be sucked to be on the front end of all that knowing, like knowing that this is what’s going on in like, like, I can’t fix it, you know, and then and then it’s I’m assuming that it’s better now for your family and your personal life. And so that’s why I was saying it’s a beautiful story, as I’m assuming that part.
Bill Gasiamis 38:50
It’s, better because what they’ve seen is the actual effort that I made to make things better, to apologize to them, except when I was wrong and to give them a break because they’re kids and they’re making mistakes and that’s how they grow up.
Bill Gasiamis 39:06
And that’s how they learn. And to just get off my wife’s back, you know, with just being parenting differently. I thought that there was only one way to do things that was my way. And what they did was they accepted my apology and then they gathered around me more like they came closer.
Bill Gasiamis 39:27
They were able to say hey, I’m gonna go hang out with the old man for a little bit you know, and talk about stuff or whatever. They were able to come to me because I was vulnerable and express to them my personal emotional and mental problems.
Bill Gasiamis 39:42
They’re able to go okay, well I’ve got an example now of what a man is because they’re both boys are both men. This is what a man can do if they want to. So now when they’re going through a tough time as adults, they can come to me or they can go see a counselor or they can go to anyone they can talk through their tough times instead of sitting with them and making matters worse just by sitting in there and overthinking things.
Bill Gasiamis 40:09
So yeah, it helps to bridge the generation gap. And then it helps to heal the wounds, and then it helps to just overcome, overcome some of those things that you don’t realize you start with the best intentions, but it causes a rift in the relationship and then you’ve lost them and it’s hard to get them back.
Shane Duffiney 40:33
It’s funny, like, in a way, it’s funny, like I Yeah, at some point with all that success, quote, success, like I started thinking, Well, okay, you’ve become the person you’re the man you always wanted to be in, like, in the reality is like, my, my cousin sent me a letter, a thank you letter I got last week, you know, my uncle passed away.
Shane Duffiney 40:59
And, you know, I like dropped everything went to, to help them. And that was months ago. And now I went back over there to help them close up best just just just to be in the room with them while they’re going through everything, right, you’re going through the stuff and seeing what they want to carry with them throughout the rest of your life.
Shane Duffiney 41:18
And you know what I’ve ever gotten to get that letter. That’s very heartfelt. Thank you for being there. And thank you for just being this presence that was, you know, helpful and calming. And, and I was just thinking, Okay, now, now I’m the person I’m the man I always wanted to be, you know, and to, because that’s, that’s, yeah, I want to I want it to be that person. That’s, that’s more honored.
Bill Gasiamis 41:47
Yeah, you can’t just be a big hit on a body and turn up to places and cognitively solve everybody’s problems. When they lose somebody, right? You can’t go in there with a head-based solution, you’re gonna go there and just be present.
Bill Gasiamis 42:02
And even if you don’t know what to say, and you’re just there and you’re calm, and you’re loving, you’re expressing love, just by being there, right? People catch on, and they sense that and, it’s appreciated. And it’s easy to do. Shane, you didn’t have to do much.
Shane Duffiney 42:24
You’re right it is sometimes it’s hard to just shut up and sit there. But you’re right it doesn’t take, it doesn’t take a lot. It doesn’t cost anything doesn’t cost anything. And it’s so invaluable. And it took a stroke for me to become the person I wish I had always wanted to be.
Bill Gasiamis 42:41
That’s crazy, good. And just crazy. It’s insane that words come out of more than one person’s mouth, you know those words. So many people have said the same thing. And I love that what it does is it transforms this terrible thing that happened to you, you almost took your life and all those things, but it’s transformed into this amazing thing.
Bill Gasiamis 43:08
And that is what’s great about like, where are the gifts in this terrible time that occurred in a way is the possibility for growth. And that’s what my book is about. It’s about the unexpected way that a stroke became the best thing that happened. And it became that it, it states that wasn’t the best thing that happened.
Bill Gasiamis 43:29
It didn’t start as a great thing. We were completely overwhelmed by everything that it did and caused and the challenges, but somehow we managed to drag some positivity out of it. And that aim, almost like you said, instinctively, it was just these things all happened without me putting a lot of you know, an in a business decision.
Bill Gasiamis 43:55
You know, these are your goals, right? If I do this, this, that and that, and that and that. I’ll get that result or come very close to getting the result with a podcast, but I didn’t have any of those thoughts. I was like, I should have a podcast. And that was it. I did it. And then oh, I think I need a bit of microphone.
Bill Gasiamis 44:13
I’ll just get a better microphone when I can manage to bring the money together. Oh, and then I’ll learn how to edit. And then do you know what I mean? Like there were no pre-conceived things that I was going to do with this struggle.
Bill Gasiamis 44:28
I was going to transform it and I was going to know it was just me acting from a heart space and going alright, what could be good about doing a podcast or meeting other people? Okay, what else and then I’m here and it was like that old relate to me or relate to them.
Bill Gasiamis 44:45
And then what I didn’t realize was that after X amount of episodes, it was making a difference to other people and that was helping them and they were feeling better. And that was making the stroke recovery. I knew I knew none of that stuff. I never had any of those extra quotations.
Bill Gasiamis 45:01
And then it’s like, wow, here we go. And it was all simply, from me, just going, I’m going to follow my heart, and I’m going to do the thing that I think is a great thing to do. That’s it. And I never had a lot of time, energy, or cognitive ability. In the beginning, it was really hard to put two episodes together, one after another.
Healing journey after stroke and writing a bookBill Gasiamis 45:23
So, you know, I couldn’t do one episode a week. But then about four or five years after, putting episodes out incrementally, I started to find my mojo. I was able to put out and commit to one episode a week. And that’s been like that for about three or four years now.
Bill Gasiamis 45:40
So it took, it took a long time, and it’s part of the healing journey, it’s helped me recover, it’s helped me heal, it’s helped me look back and go look how far you’ve come. Volunteering did that as well, going into volunteering at the Stroke Foundation here in Australia and meeting other stroke survivors.
Bill Gasiamis 45:59
That was not something that the old me would have ever done, volunteer and help other people for free. And well, like, What are you talking about? As if Why would you do that? So it was like, a massive opportunity for growth for anyone listening. And it’s like, Where? Where is the path of least resistance?
Bill Gasiamis 46:21
Where can you go and get the massive, most massive benefit in return, whether it’s emotional, mental, or physical return by doing the smallest, putting in the smallest effort possible? So it’s almost the lazy person’s approach to life, but it’s to preserve your energy so that you can attend that event or that thing and do that thing, and then reap the rewards from doing it.
Bill Gasiamis 46:50
You know, it’s just the episodes are recorded before this one is with a lady who adaptively teaches yoga to people who’ve had neurological issues, whatever they are, okay. And she talks about, like, going to adaptive yoga, it’s got nothing to do almost with that.
Bill Gasiamis 47:08
That part of the process is called Yoga. She says the benefits far outweigh the yoga part of it, because it’s community, it’s people understanding, it’s chatting, getting ready. It’s finding a way to solve a problem like, how am I going to get dressed on time? Or how am I going to get to the event on time?
Bill Gasiamis 47:28
Or what am I going to do when I get there like, it’s all these other peripheral things that you don’t pay attention to you don’t notice? That, okay, another benefit, the yoga is just an amazing excuse to turn up somewhere and meet with like-minded people, but the other peripheral benefits are just huge.
Bill Gasiamis 47:49
And that’s what the podcast has done for me. And that’s what volunteering did for me. And, then that’s how the book just came to be. It seemed to be a natural progression, it took four years to write and develop the idea and all of that, but it was just a natural progression.
Bill Gasiamis 48:08
And it came to an end. And now there’s a book. And people think, ah, that’s impossible. I can’t do that. But believe me, I never read a book before my stroke, because I didn’t think that was useful.
Bill Gasiamis 48:22
But then when I needed to learn about my recovery, and how to get better. So I did I dove into books. And I became educated. And I learned all because of the stroke this all this stuff is not build before, you know before the stroke is not this guy.
Shane Duffiney 48:40
Yeah, and I’m really glad you pointed out that you have so many of those things. Because somebody might take it the wrong way. When I say like, it was the greatest thing that ever happened to me. And they look at me like, oh, yeah, well, you’re walking, you’re looking at your you’re fine.
Shane Duffiney 48:54
Right, you know, and they don’t, they didn’t hear the fox. I didn’t say it, but you did. You know, there’s a part of the story where you’re back to that, like weeks of pain, and have to learn how to walk and talk again. And fortunately, I was able to quickly, like you said, like the peripheral things these people are experiencing together, because you have to learn how to get dressed again.
Shane Duffiney 49:20
You have to learn how to put your pants back on you have to learn how to button them again. You have to learn how to, like, Cook was like being in my 90s Like, you know, I’m like oh, this is what is old and invalid. Like I couldn’t. Somebody would take me to the store so we can go buy food.
Shane Duffiney 49:41
And I couldn’t get in the door. And I’d be like yes take me back home. Because like like I’m about to pass out. Right, you know, and it was like getting then it was just like incremental victories, being able to be able to get down the stairs, being able to get to the car.
Shane Duffiney 49:58
Like you know, if I didn’t put the work in today, to be able to function tomorrow, like practice walking, practice turning my head and looking at something. Like until you lose the ability to turn your head and look at something you don’t know what it’s like to fight to get that back, you know, so yeah, those peripheral things, and then only other people, you know that in that situation can’t have had.
Shane Duffiney 50:28
And again, I was very fortunate I got the shot, you know, the people who, who, you know, seven years later are still very visibly, you know, not functioning well, like those people didn’t get the shot, but there are still probably pretty, I mean, a few of my mad at ones that met and I’m so excited when I hear somebody talking about like,
Shane Duffiney 50:49
My son just had a stroke, like, I’m like, Hey, he’ll get better. Yes he well, I mean, like, or, like, people come up to me and talk to me, because I’ll be telling a friend, you know, I see a friend, I used to live in Texas, I live in Pennsylvania now. And they were in town.
Shane Duffiney 51:04
And we caught up and somebody heard me telling the story. And they came up to me and they said, My son just had a stroke, you know, and it’s like, these are anything you think I should tell him, I was like, he will get better, like, there are trained, committed people out there in the medical field, the medical community to help him get better.
Shane Duffiney 51:26
Like, just do it, he’ll get better one inch at a time. But it will happen. And so yeah, it’s great to be able to have that. I mean, it’s like the most rewarding thing. And now here, I’m trying to do financial, like I’m doing financial coaching now. Because I love, like, that’s where my heart is gone.
Shane Duffiney 51:45
Like I love seeing, like I just talked to I was having a haircut the other day, and I was talking to this lady, and she’s like, I can’t retire, I can’t afford it, and she told me some things. I was like, well did you check this? And did you check that? And she was like, No, I didn’t, I didn’t know you could, and like, by the time I left, she was like, I think I can retire.
Shane Duffiney 52:02
And you know, just like I changed her world. Like that information changed her world, I was high on life for a week after that. Like, you know, so it’s great to be able to follow your heart a lot more, right, you know, and reap the rewards, whether they’re financial or you know, or whether they’re just so like I said, I was high on life for a week. From an eight-minute conversation.
Bill Gasiamis 52:34
And I love what you said about reaping the rewards, it’s like, when something is really difficult, you know, you can’t walk. And the deficits have caused problems for people and it’s in that fight, it’s in that fight, you know, no matter if you’re fighting for better movement, more walking, more flexibility, more whatever, there is always a positive payoff, you do get something out of it.
Bill Gasiamis 52:58
And if you judge yourself by, I’m not running, like I used to run before the stroke the same, then you’re gonna feel deflated. But if you understand that you’re able to continue biting and improve incrementally, and you may not get back to before stroke, what it was like before stroke, but you can continue to improve always, well, there’s when you have the guts to go after that you do.
Bill Gasiamis 53:28
You get rewarded, and your effort doesn’t go wasted. You know, that’s not how it works. When you go after something, you learn something, you grow, you get challenged, you prove yourself wrong.
Bill Gasiamis 53:47
And, it’s really important to not judge yourself by what you weren’t capable of previously, you know because the stroke happened and you have your character now gets the opportunity to build itself from what you do now, not from what you did in the past.
Shane Duffiney 54:07
This was like such huge some of what you said is such a huge factor on you know, I reached I thanked you, I sent you an email to thank you because of course, I started looking some of the stuff up after it happened to me and in and you know.
Shane Duffiney 54:24
I saw these headlines on YouTube and for your podcast and I was like I watched some of it and what I could and I was like, okay, these people just like my friends are talking about they got better, and they’re all happy. Admittedly, I was happier.
Shane Duffiney 54:45
Three days after my stroke, unable to walk and talk, and intense pain that I had three days before my stroke. Because there was just such a life change that I like, I’m like, I want to spend time with my niece and nephew right? I don’t want to like to skip Christmas anymore because I gotta go finish this deal.
Improving the quality of life for people with neurological conditionsShane Duffiney 55:04
But, you know, you invited me to be on this podcast, and, and I, you know took forever to sign up for that. And you know what brought me back to make sure I sign up for that was because one, you know, looking at through the lens and thank you but also, I saw somebody in my neighborhood I saw somebody walking in my neighborhood and I was driving, I saw like a pastor.
Shane Duffiney 55:34
She had this weird shuffle gait limp with her left leg and her right hand was not functioning, and she was trying to keep it up. And, you know, and, her face wasn’t functioning correctly, or just was in this weird position. And then I saw the determination and the drive in her eyes, right?
Shane Duffiney 55:55
You know, this slightly older lady. And I saw that determination and drive in her eyes, I was like, I will, I will be able to I will learn to do this again, right, you know, and I recognized I should say, I recognize that. And I thought to myself, like, you’re gonna get better, like, you’re gonna get better.
Shane Duffiney 56:20
What you’re doing now those little, little, little incremental. Admittedly, it was, it was a war of inches, for me, and it’s going to be a war of inches for her. But I just thought like, if one person could hear you would get better. Like, that’s why I made sure I signed up on your calendar and just just so I could give back a little bit. And just just make sure somebody hears that, like, you will get better.
Shane Duffiney 56:51
The reality is, for me at least, like every day that I did the work that I was being told to do at home, the physical therapy work, like I could tell the following day, I was a little bit better, right, just a little bit better it which was incredibly encouraging. So like, if you’re at home, and you happen to catch this podcast, you know, and you’re very depressed, totally understandable.
Shane Duffiney 57:20
But don’t let the depression stop you from trying. Because because it will get better. And I was the guy who told that I told the frickin neurologist, because he was like, I’m gonna sign this paperwork to the to your out for the rest of the year from work. And I was like, no, no, no, no, I’ll be back in three months, I’ll be back in three months.
Shane Duffiney 57:38
So you fill that out for I think I said five months, or something like that, like, I’ll be back. You know, and, and I made him feel it out for like, whatever, three, five months, I don’t know. And like, I humbly went back to him. And I was like, I just didn’t realize how bad I was. I was the last one that I was.
Shane Duffiney 57:56
And I humbly went back to him and was like, You don’t understand who I am, I make things happen. And I went humbly back to him apologized and just told him I was sorry for thinking I knew better than you. You know, that was very, very ignorant. I mean, I did and, asked him.
Shane Duffiney 58:18
But again, like, it’s it for me being here. It’s all about, you know, for those people who are down and depressed, like you know, you know, you will get better if you put in the work, and I hope they do.
Bill Gasiamis 58:33
Yeah, and it’s true, and I don’t care what condition you’re in now, you can always make a better you can always adjust your nutrition and eat better, healthier, whatever. And make sure that you’re not making your deficits worse by eating the wrong food or drinking alcohol or smoking still and that kind of stuff.
Bill Gasiamis 58:55
You can meditate and make your emotional state calmer and better. And that doesn’t cost anything or you don’t need to go anywhere to do that. You know, you can do so many things that can improve your situation, even if you don’t look like the person that you looked like before.
Bill Gasiamis 59:18
You know, even if you don’t feel like the person they felt like before you can still experience improvements and benefits, and technology is rapidly changing. You know, I did a podcast episode about a tennis court. A little while ago. It’s an injection.
Bill Gasiamis 59:39
There’s a Dr. Tobinick in Florida who injects people it was previously an anti-inflammatory medication, which is still useful people for rheumatoid arthritis. And somehow they stumbled across it improving stroke symptoms for a lot of people and it doesn’t work for some people.
Bill Gasiamis 59:58
And that episode has just offered so much hope for people being able to understand that technology and medicine have moved in a positive direction towards being able to support us in spaces where they never did before. And then I was watching this sleep.
Bill Gasiamis 1:00:18
That was on the Joe Rogan podcast, he was talking about Randy Travis, an American singer who had a stroke some years ago and lost his ability to sing. And now there’s AI technology that’s been able to sample his voice and turn from his previous records and the diff.
Bill Gasiamis 1:00:41
And the songs that he’d released in the past. And they’ve been able to create a new release, even though this guy cannot sing anymore, and can’t talk anymore. And he’s just released the song. I don’t know if it’s very recent, or how recently, but they released the song with AI, in his voice singing this new song.
Bill Gasiamis 1:01:00
So I don’t know that life’s over four stroke survivors, I don’t know that you should just put yourself on the, on the bench, you know, and store yourself away and forget about life anymore, think you should go after things and find a way to solve your problems.
Bill Gasiamis 1:01:23
Because even in that fight, the finding of ways to overcome that you just grow in that as well, just in the fight to find solutions. Rather than focus on problems. You know, if you focus on problems, you’re gonna get tons of them. If you focus on solutions, you’re gonna get tons of them.
Bill Gasiamis 1:01:40
So it’s just about where you put your mindset, you know, you can shift that easily. And that doesn’t cost extra either. It’s just a free experience that you can have. Sounds like you’ve very much taken a lot of those lessons and run with them. And it seems like you’re thriving and benefiting from them.
Bill Gasiamis 1:02:00
Even though you’ve been, you know, we’ll call it like, a little bit scared or nicked by this thing, you know, and you’ve got, you know, a physical thing to show for it. It’s, there is a physical thing in your brain, right, that has been damaged.
Shane Duffiney 1:02:16
I’ve seen the scan, there’s a little bit smaller on the golf ball size, a dead spot. I was like, so that’s dead. And they’re like, yep, that’s dead. I was like, that’s gonna never come back to life no.
Bill Gasiamis 1:02:36
Yeah, right. But around that what’s interesting, also, is that I did an episode on hyperbaric oxygen therapy as well. And they’re finding these areas, they call them penumbras that are areas that are offline, that have been put offline, because of the injury, and then because of the damage that’s occurred in that main spot.
Bill Gasiamis 1:02:58
And what they do is this clinic of clinics in the United States as well, I think they are in New York and a couple of other locations. And what they do is they put you, or people through a whole bunch of tests to discover whether there’s these numbers, these areas that can be rehabilitated around the dead zones, so to speak.
Bill Gasiamis 1:03:23
And if they find them, they can put you through hyperbaric oxygen therapy sessions. Their protocol, I think, is one session a day for 60 days. And people recover some of those areas that have been put offline. So even though it appears as though that part that’s gone is gone.
Bill Gasiamis 1:03:45
Usually, it’s surrounded by other parts that can be rehabilitated, that can be helped with again, technology, and medicine. So I would encourage people to just leave no stone unturned, no stone unturned for things that they can do to recover.
Shane Duffiney 1:04:05
Glad you told me about that. I mean, it’s Yeah, I mean, I anything, anything that can help with the Neuroplasticity? Back are the building up stronger, blood veins. I mean, that little bridge going around that blockage is much smaller than the original original vein. Let’s, I’ll take two or three more of those little bridges.
Bill Gasiamis 1:04:33
And the more you can support them, the better the more you can put oxygen through them and encourage blood flow the better, and even then, that’s fascinating as well. I never knew that blood vessels do that. That’s unreal. I love that.
Shane Duffiney 1:04:47
Oh, yeah. Okay, I mean I just to me You’re like the foremost Doctor authority on the subject matter like you’ve been doing this a lot. Yeah. When they told me that I was like, that’s some sci-fi Yes. Yeah, that’s an alien step right there.
Bill Gasiamis 1:05:03
It is, I must admit, I’ve learned a lot about stroke, stroke recovery, and all the different conditions and all that kind of stuff. And it’s, you know, I’m not an expert in any medical sense or any of that.
Bill Gasiamis 1:05:16
But I can relate to a lot of things that people are saying, and give them a sense of go there, have a look there or speak to that person, or check out this, or this is another thing I came up with, or I remember on that interview, somebody said that, something like that.
Bill Gasiamis 1:05:31
So, you know, I’m like a hub of information that I could send people to and from, and it makes a massive difference in being able to decrease the amount of time that stroke survivors find that information, right? So previously, they might have had to stumble across it over a year or two, or months, or whatever.
Bill Gasiamis 1:05:51
And now, if they happen to know me, or know of the podcasts and ask the right question, and I answer it, I can decrease the time that it takes for them to get that answer. Because, you know, squeezing into weeks and days instead of years of research and discovery, and all that kind of stuff.
Bill Gasiamis 1:06:09
And it’s good because I learned that from my stroke survivors who have interviewed, my neurologists don’t know that some of that stuff, you know, my doctors don’t know that stuff. You know, and certainly, my experience is a lot of the doctors in the neurologists that we deal with in the acute phase of our stroke, we never see again afterward.
Bill Gasiamis 1:06:30
So you can’t follow up with them, and you can’t get more information out of them, all you do is get patched up and sent home. And that’s the hard part, that’s where the gap of information lies, you know, it’s not their job to do that. I don’t feel like so I don’t want to be too hard on them. And that’s where I feel like I fit in, that’s my job to do that. To create a network of inflammation so that people can get to it more easily.
Shane Duffiney 1:06:57
Yeah, it’s, you make a really good point. I mean, again, not to go down to be too rough on the doctors and medical people in this field. Because I mean, these, you know, I pointed out to me, for, like, the neurologists to be the, you know, to make it and be a neurologist, that’s a lot of dedicated time in schooling.
Shane Duffiney 1:07:20
And it’s not like a kind of school where everybody just gets an A if you do good enough, no, it’s like only a certain amount of, there’s like, whoever’s the best of the best is allowed to be that and it’s, that’s how it goes on the ranking system. And, like, we know, upfront, like, somewhat like this, many of you are going to fail, because you’re just not as good as these others.
Shane Duffiney 1:07:40
It’s not like, you just get a certificate or degree in it, you have to be the best the best either way, you know, and so they have their reasons to to go through all of that. And to be that committed to getting into to become a neurologist who does brain surgery does work with stroke victims and in and you know.
Shane Duffiney 1:08:06
That’s back to the comment I made about committed medical dedicated professionals who come up with off-the-wall things that, you know, really maybe aren’t approved, or aren’t what’s considered the medical way of doing it, because but it’s like, well, we’ve seen patients get better when they stand on this Wobble Board right?
Shane Duffiney 1:08:31
Now, when I take them off for a hike outside and have them look at the skyline while they’re walking, they seem to recruit better quicker than if they use this tool, right? So then that becomes like, again, it’s like people are going in there, like professionals are going to their off hours to go with patients and how that but either way, right, you know, it’s like, you know, they’re very in the trenches of it.
Shane Duffiney 1:08:53
And it’s in sometimes, you know, I’ve gotten a view I’ve done some things and helped my tried some things that I found out, oh, they do in another country, or they try to some other point, you know, and some other time and it was worked out sort of, well, you know and you know, maybe it’s not just like what’s considered like the most modern.
Shane Duffiney 1:09:13
I think you make a point to like back to the neurologist, but like, you know, my neurologist who was for my stroke is very different than the neurologist from for my ongoing pain in my brain. Right and so, you know, the neurologist right strokes like Well, yeah, they do this and they do that, you know, he can, you know, they can work with you for getting turns out like Botox, or you do Botox to try to alleviate the pain.
Shane Duffiney 1:09:37
And so I go to the neurologist for headaches specifically and he’s like no, we don’t do that first. Like, like, we don’t do that first. We do that in extreme cases. And so just, there’s very different there’s differences and discipline and fields and skill sets of neurology, you know, so to be able to find a source like yourself or your webpage or your podcast, you know, the internet.
Shane Duffiney 1:10:15
To get some practice on things get some resolutions or just try something different. And again, if it works, if it even helps a little bit, like, like a little bit 2%, better today than I was yesterday, is a lot, especially what I can do 2% I can be 2% Better the following day, and 1% by the next day. And yeah, I’ll try anything.
Bill Gasiamis 1:10:39
Accumulated benefits, massive, massive, and YouTube is an unbelievable resource for stroke survivors. I mean, it’s endless, what you can find on YouTube, about how to support yourself.
Shane Duffiney 1:10:50
More and more information on that subject, at least, like three or 2021, I think it was when this happened. Like, it seems there’s more information out there and I ischemic, like the cardio, care, whatever they call the special medical term, there’s a lot more information out there.
Shane Duffiney 1:11:07
Now, just on that tear, there’s very little information to find out there, but I can find there’s a lot more out there on YouTube to find and I’m like watching like a two-hour lecture by some doctor in Toronto, right, you know, and in Toronto, Canada, and I’m like, wow, like, that’s good to know.
Shane Duffiney 1:11:25
And like I you know, and turn it around to like, at least I wrote into this like going to a doctor for something else. Just anything else, whatever. Like a normal general practitioner. It’s funny because the discharging doctor even though he was like, I want to discharge you personally, because I don’t get a discharge, somebody’s in better condition.
Shane Duffiney 1:11:49
And they walked in here very often. But also attendees, he wanted to make sure I understood fully what happened to me like you had an isometric or ischemic stroke, you have full-on, he was very specific, you had a full-on isometric stroke, nada, nada, a wandering stock, or whatever they’re calling them and whatever part of the country right now for like a partial stroke.
Shane Duffiney 1:12:15
And I’ve run into that to where like, again, like, because of the effort and the work put in, and how fortunate I was like, to me, like, Man, I would never know you had a stroke. And it’s like, that’s a great compliment because of the work. But then they’ll go to a general practitioner, and they’re like, they don’t believe me.
Shane Duffiney 1:12:33
You know, and then I’m like, and you know, they see like, Oh, you’ve been prescribed high blood pressure medication. So you have high blood pressure, and you have all these other ones.
Shane Duffiney 1:12:42
So maybe the reason you’re here for me now is because like your symptom would be the high blood pressure, like I don’t have high blood pressure, they just prescribed me that medication. After all, that’s what they prescribe to people so like, so also like e being able to be more informed on the subject matter.
Shane Duffiney 1:13:00
And especially when it comes to technical terminology, like to be able to kind of throw some of that, even picking it up from another dot from professionals in that specific field on YouTube.
Shane Duffiney 1:13:12
You have to walk into least I run into it a lot, where they’re just like, you know, they don’t want to like sometimes they don’t want to the doctor doesn’t want to listen or Yeah, like, Hey, I had this I started using, like explaining it to them. They’re like, Oh, okay, no, I see that now.
Bill Gasiamis 1:13:27
They want to be the one source for medical information, which they can’t be you know, that’s like, that’s an ego thing. What they need to be is the need to listen, and they need to embrace what you’re saying, and they need to respond appropriately in a medical way and say, Yeah, I’m not sure about that, or I’ll look into that, or you might be mistaken about that.
Bill Gasiamis 1:13:49
They need to allow you to have the conversation, the days where you go to the doctor and you let them do whatever they want. And then you just accept that. That was my dad’s generation. My mom’s generation not us, we don’t do that.
Bill Gasiamis 1:14:06
They need to step up, they need to know, they’re the stuff and if they don’t know this stuff, they need to be able to know who to send us to, if they don’t know their stuff, and that’s okay, I’m not expecting everyone to know everything. But I’m expecting them to respond appropriately when I challenge them.
Bill Gasiamis 1:14:23
And they can’t respond. I’m not doing it to teach you a lesson or to make you feel like you’re a terrible medical professional. I’m not doing that. I’m just trying to protect myself and I want to make sure I make the right decisions going forward because I’ll have the cognitive ability to so I am going to do it and I don’t have time for you to make mistakes and to create setbacks for me.
Bill Gasiamis 1:14:49
I’ve already had enough of those and I need to be efficient. So that’s all I’m just doing. I’m just having a proper conversation and I want you to respond appropriately. And if you don’t know, I’m not going to hold that against you. I don’t expect you to know everything.
Shane Duffiney 1:15:04
Don’t Don’t Don’t dismiss me at least don’t dismiss what I’m saying or what I mean. There. I mean, I will tell a medical professional who listens to me and listens, listens. Does. I will thank them. Like, thank you so much for patiently listening to me.
Shane Duffiney 1:15:23
And in I do I have run, I think everybody’s kind of run into it, at least if the older, more experience you have with some of the, you know, the medical profession, the more you might I always I’ve run into where it’s like, they get stuck on trying to prove their right.
Shane Duffiney 1:15:41
Instead of right, like, you know, instead of like, well, okay, like, none of the symptoms are actually at this point pointing to that. Why are you still really working on trying to prove that that’s what it is? If everything’s kind of pointing over here now.
Bill Gasiamis 1:15:56
Medication is one of those things, right? It’s interesting what you said about medication. So there are some protocols for stroke such as high cholesterol, medication, blood pressure, medication, and all that kind of stuff for somebody who turns up because of carotid artery dissection.
Bill Gasiamis 1:16:12
Okay, and then don’t have any of those underlying causes. I would question whether or not you need to take the medication at all. Now, in the initial phase of we don’t know, what’s going on with you exactly. So why don’t we take some preventative action? I accept that I accept the preventive action.
Bill Gasiamis 1:16:34
But if I am not on task, I don’t have the risk factors, if I don’t have pre-existing conditions, you know, why should I be taking the medication? And I think like, in those instances, you should be able to challenge a doctor and go, I think I want off of these things.
Bill Gasiamis 1:16:48
And, you know, this is what I’m requesting this is what we should do, let’s talk about how we’re going to go about doing that and achieving that. If you’ve got high blood pressure, and you can’t control it, you should not be off high blood pressure medication, under any circumstances, you know.
Bill Gasiamis 1:17:05
And it’s just stay that’s the thing is like, and I’ve had interviews where I’ve interviewed stroke survivors who have said that, that they will, they’ll they’ll put on all this stuff preventatively.
Bill Gasiamis 1:17:17
And then they will like, I think I went off and found the right doctor and disgusted and became monitored and did Bloods and did all that stuff. And eventually, they got off it. And it’s better to not take a medication that you don’t need to be taking.
Shane Duffiney 1:17:36
Yeah, and I ran into like I said earlier, like, the big thing I brought it I ran to I did I said similar I fought to get off some of it to get it, you know, some of it like went back on later. And but it mostly was because there’s in general, the protocol before discharges.
Shane Duffiney 1:17:55
And that’s what that’s what they told me like, it’s the kid the residence, it was like, Okay, well, this is what we get, we sign up and sign you up for once. It even I remember they even had a conversation with a resident who said no, but he doesn’t have high blood pressure.
Shane Duffiney 1:18:11
And they were like, well, yeah, but that’s what we give him. You know, it will let’s just give it to him, you can get taken off it later. And the thing I’ve run into is, then my chart now says that and like you’re on this and I start getting misdiagnosed for other things, because then they the medical professional in the future uses what’s happened to me sees I’m on high blood pressure and now starts Miss diagnosing me because they assume I have high blood pressure.
Bill Gasiamis 1:18:45
Complicates the medical issue.
Shane Duffiney 1:18:48
I’ve fought to get that taken off, like, hey, let’s get that off of there. Because it’s like, I don’t have again, as you said, I don’t have time to come back three more times. When we pray it probably could diagnose this the first time we eliminate the high, just as example, the high blood pressure that’s out there.
Bill Gasiamis 1:19:09
Yeah. So that’s the thing, like being accurate in your diagnosis and your medical history. Your actual medical history is really important to be accurate, you know, and that’s the thing.
Shane Duffiney 1:19:21
I just updated my medical history correctly. The other day, I said, You need to correct this. Like, very important. It’s funny, you said I’m sorry, I interrupted you.
The hardest thing about the stroke for Shane Duffiney
Bill Gasiamis 1:19:31
That’s all right. Look, I’m, I’m curious about a couple of things as we wrap up. Now, what I’m curious about is what’s the hardest thing about stroke.
Shane Duffiney 1:19:48
Hardest thing about stroke and I want to kind of want to get this answer right for your audience. Man, the hardest thing about stroke I’m tossed up between, like not getting depressed through it. Right, you know, especially the early phases, you know, in knowing you’re gonna get better because I’ve said, and I say that, like, especially about the depression.
Shane Duffiney 1:20:27
Because as I walked, I walked into the place like freaking ecstatic because I was like, this is going to change you for the better. Like, I knew it, like you’re not like, I remember walking down the back to that hallway, I walked in the door, walking down the hallway, and it’s just like, total cliche, but, you know.
Shane Duffiney 1:20:49
It’s flashing through my mind, all the things that I’m gonna miss, like, if I don’t leave this building, because that’s what I was the reality, right, you know, and I was very aware of it, it’s like, you might not walk out of you might not leave this building a lot. And so it’s like, you know, the family, the friends, that cliche, but it was so true. And I was just like, and you have not been doing enough of that.
Shane Duffiney 1:21:15
And so, back to the depression, I was thrilled. For being and all that pain and being able to again, I had to learn how to turn my head and look at things. I learned how to do that again. I got to spend weeks learning how to do that. And I still had dark moments, right? You know and scared like, sad, dark, not suicidal.
Shane Duffiney 1:21:42
I didn’t get that point. But I could see how somebody would write you know, and so that, I would say the depression, you know, like, like, so many people, I didn’t know how it affected so many people in my life already, like so many people texted me found out heard about it, from all over the country all over the US.
Shane Duffiney 1:22:04
Because I’ve traveled for work, travel, I’ve just lived all over the place. I’ve been everywhere in this country. And in so many people, you know, my brother-in-law’s family, you know, that I met for Christmas one time had great people, like, texted me heartfelt. Hey, you know, I heard you’re going through some stuff.
Shane Duffiney 1:22:25
You know, and I, you know, you’re cared about like, those was like bright shining star moments for me in that depression. And I’ve made so for myself, I made sure every one of those people who reached out to me, like, when I see him again, in person, I thank them, I look him in the eye. And I thank them.
Shane Duffiney 1:22:45
I tell them how much that mattered in that moment. So it was very, it was very depressing. And I was probably about as happy as you can be. Like, and it still was very depressing. And those for anybody else who’s watching and hasn’t had a stroke like yeah, those little, that little text message was very helpful.
Shane Duffiney 1:23:05
So yeah, I mean, the depression I would say is probably the hardest in the thought of I won’t get the I can’t get better. Like there’s no like, my life is over. My life is over. Like, it’s not back to why I finally showed up for this, right? Like, my life is over.
Shane Duffiney 1:23:23
My life is over and that lady walking down the street, and I was like, Oh, I know where she’s at. She’s she’s had a stroke. Like, she’s fighting this and her life is not over. It might feel like it right there.
Shane Duffiney 1:23:36
But she’s doing what it takes, you know, and it’s yeah, the world is not over life is not over and it will get better. And man, you know, and if you have to have a you have to have a midlife crisis by us by Porsche instead. Know, but this will do.
Bill Gasiamis 1:23:58
Buy a Porche, drive fast, scratch it, and realize it wasn’t the Porsche that was gonna make me feel better at 42. Right? And then sell it for half of what you bought it and you know, let it burn a hole in your pocket and then go, Okay, now what do I have to do?
Lessons from the strokeBill Gasiamis 1:24:25
What has stroke taught you?
Shane Duffiney 1:24:27
Oh, cherish the moments. cherish the moments, cherish the moments. Every once in a while I start forgetting that, you know now recognize, recognize, cherish, take, you know, I do this thing. Like you know again I didn’t realize how much it was going to help other people.
Shane Duffiney 1:24:49
But it did. So people would come up to me when they saw me again. I do this thing where if I stop cherishing the moments, I mean any not like I I’ll make a point in my day to take a look around my day and find something beautiful in the day. And it might be in that might be a car on the street, like my experience.
Shane Duffiney 1:25:14
If I put myself in the right mindset, I can find something beautiful and an ugly object, right, you know, and inside, take a picture of it. And I just that angle that where I’m seeing the beauty of that. In that post, I posted on Facebook, and I put the view from my window.
Shane Duffiney 1:25:31
Right? And when people asked, like, why do you do that, it’s like, because, because I’m making sure because I’m forgetting right now I’m forgetting to cherish the moments, and I’m getting kind of depressed with it from it, you know, and, and I’m making a point to make sure I do.
Shane Duffiney 1:25:45
And other people like me, that helped me out a lot. You know, it made me start realizing I need it. That made me start looking at the world around me differently. So I would say like, that’s been the, the biggest thing is cherish the moments. Like, having a yacht and going to be I guess not, it’s not worth all that.
Bill Gasiamis 1:26:09
You happen to find yourself on a yacht. And it’s a beautiful day and you’re cherishing the moment.
Shane Duffiney 1:26:14
That’s perfect, perfect.
A message for other stroke survivors from Shane DuffineyBill Gasiamis 1:26:20
What’s the message you want to leave the people watching and listening with? You know, what do you want to say? Other stroke survivors?
Shane Duffiney 1:26:27
Yeah, I, yeah, I’ve kind of kept throwing it out there. Thanks for asking that question. Again. I’ll reiterate it, you know, you will get better at it. This isn’t the end of your life. This isn’t it? You know, whatever the old saying is, it’s always the brightest after the darkest moments, right? You know, and it’s very true.
Shane Duffiney 1:26:55
In this case, there are like, you will get the I took me weeks to learn how to turn my head and look. There, they will put a Z on the end of a stick and now like, Okay, follow it with your eyes, I guess I wasn’t even turning my head. It took me weeks to be able to do that.
Shane Duffiney 1:27:16
Like, you will get better. Further stroke survivors out there. And like, don’t, don’t, please don’t look at the condition I’m in now or here like and look and think and let that turn into well, you aren’t as bad as me. Because you were never as bad as me maybe I wasn’t bad off after the shop is immediately after the sharpest me.
Shane Duffiney 1:27:42
Maybe I wasn’t but there are dedicated professionals who are committed, who have made it their life’s journey to find ways to to help you. And if you put any effort and an effort in the beginning is just mentally saying I’m gonna do this and then eventually you will physically also be able to do it.
Shane Duffiney 1:28:05
And I know there’s been plenty of people on this podcast that have been worse than I was that have said the same thing. So please, like that’s that guess that’s just the big thing like you will get better keep keep keep on keeping on. You’ll you’ll get better if you’ve tried it.
Bill Gasiamis 1:28:23
Awesome. Shane. And on that note, thank you so much for A reaching out and sending me that amazing email B agreeing to be on the podcast sharing your story. I appreciate it.
Shane Duffiney 1:28:35
Absolutely. Thank you very much. Bill thanks for following your journey and finding your journey with this and being there for everybody.
Bill Gasiamis 1:28:45
Thanks for joining us on today’s episode. If you’re interested in a copy of my book, you can go to Amazon and use my name Bill Gasiamis In the search bar or visit recoveryafterstroke.com/book. To learn more about my guests, including their social media links, and to download the full interview transcript head over to recoveryafterstroke.com/episodes.
Bill Gasiamis 1:29:10
A huge thank you to everyone who has left a review it means the world to me. Reviews are crucial for podcasts to thrive and your feedback helps others find this valuable content making their stroke recovery journey a little easier. If you haven’t left a review yet, please consider leaving a five-star review and a few words about what the show means to you on iTunes and Spotify.
Bill Gasiamis 1:29:34
If you’re watching on YouTube, leave a comment below the video or like the episode and subscribe to the show on your preferred platform to get notifications of future episodes. If you are a stroke survivor with a story to share now’s the perfect time to join me on the show that interviews are unscripted and don’t require any planning. Just be yourself and share your experience to help others in similar situations. Thanks so much for being here. Once again, I appreciate you see you on the next episode.
The post Ischemic Stroke Recovery Story – Shane Duffiney appeared first on Recovery After Stroke.
Maximizing Stroke Prevention: The Ultimate GuideIntroductionIn today’s fast-paced world, the prevalence of stroke is a pressing concern. With its debilitating consequences, stroke prevention has become paramount. The Getting Ahead of Stroke Campaign is dedicated to empowering individuals with the knowledge and tools they need to get ahead of stroke. In this comprehensive guide, we delve into effective strategies and actionable steps to mitigate the risk of stroke and safeguard your well-being.
Understanding StrokeWhat is Stroke?A stroke occurs when blood flow to the brain is disrupted, leading to cell death and neurological impairment. Ischemic strokes, caused by blood clots blocking arteries, and hemorrhagic strokes, resulting from ruptured blood vessels, are the two primary types.
Risk FactorsIdentifying and addressing risk factors is crucial for stroke prevention. Common risk factors include hypertension, diabetes, high cholesterol, obesity, smoking, and sedentary lifestyle. Additionally, age, genetics, and previous stroke or transient ischemic attack (TIA) contribute to stroke susceptibility.
Recognizing SymptomsPrompt recognition of stroke symptoms is vital for timely intervention. Remember the acronym BE FAST, which includes additional symptoms:
- Balance difficulties
- Eyesight changes
- Face drooping
- Arm weakness
- Speech difficulty
- Time to call emergency services
These additional symptoms, along with the classic FAST symptoms, provide a comprehensive framework for identifying stroke and seeking immediate medical attention.
Get Ahead of Stroke CampaignPurposeThe Getting Ahead of Stroke Campaign aims to raise awareness, educate communities, and promote proactive measures for stroke prevention. Through collaborative efforts with healthcare professionals, organizations, and the public, we strive to combat the rising incidence of stroke.
Key Initiatives1. Educational Workshops: Hosting workshops on stroke prevention, risk factors, and warning signs. 2. Community Outreach: Engaging with local communities through health fairs, seminars, and informational sessions. 3. Digital Awareness: Leveraging online platforms to disseminate informative content, resources, and testimonials. 4. Partnerships: Collaborating with healthcare providers, advocacy groups, and governmental agencies to amplify campaign reach and impact.
Empowering Through EducationLifestyle ModificationsEncouraging healthy lifestyle choices is paramount for stroke prevention. Adopting a balanced diet rich in fruits, vegetables, whole grains, and lean proteins, along with regular physical activity, aids in maintaining optimal cardiovascular health.
Medication AdherenceFor individuals with hypertension, diabetes, or other predisposing conditions, adherence to prescribed medications is crucial. Regular medical consultations, medication management, and monitoring play a pivotal role in controlling risk factors and preventing stroke recurrence.
Smoking CessationTobacco use significantly elevates stroke risk. Offering smoking cessation resources, counseling, and support services empowers individuals to break free from nicotine addiction and safeguard their vascular health.
ConclusionThe Getting Ahead of Stroke Campaign is committed to driving positive change in stroke prevention and management. By prioritizing education, awareness, and proactive interventions, we can collectively reduce the burden of stroke and enhance the quality of life for individuals worldwide. Join us in our mission to get ahead of stroke and create a healthier future for all.
Full Interview with Dr. Violiza InoaGain valuable insights from Dr. Violiza Inoa on recognizing stroke symptoms early and seeking immediate medical help. Empower yourself with knowledge for a healthier future!
Highlights:
00:00 Introduction
05:00 Getting Ahead of Stroke Campaign
12:12 Stroke treatment, including emergency response times and medical interventions
22:06 Getting ahead of stroke and family decision-making
27:50 Stroke disparities in different communities, and lack of awareness
35:00 Stroke diagnosis and treatment, including when to call 911
Transcript:
Introduction – Dr. Violiza InoaBill Gasiamis 0:00
Hello everyone. Welcome back to another episode of the Recovery after Stroke podcast. My guest today is Dr. Violiza Inoa a leading neurologist who spearheaded medical missions in rural Dominican communities before pursuing advanced training in the United States. As an assistant professor at the University of Tennessee, she champions stroke prevention and treatment.
Bill Gasiamis 0:24
Dr. Inoa’s expertise in vascular neurology and interventional neuroradiology has earned her numerous accolades including the Excellence in the Treatment of acute ischemic stroke award. Before we dive into the interview, I’d like to take a moment to introduce my book, The Unexpected Way That A Stroke Became The Best Thing That Happened: 10 Tools For Recovery, and Personal Transformation.
Bill Gasiamis 0:51
It’s a collection of inspiring stories from 10 stroke survivors, showcasing their incredible journey from adversity to personal growth, covering everything from nutrition and exercise to handling emotional challenges. This book is a beacon of hope for those on the road to recovery. For more information, you can check out recoveryafterstroke.com/book or simply search for my name Bill Gasiamis on Amazon. Dr. Violiza Inoa, welcome to the podcast.
Dr. Violiza Inoa 1:22
Hi, how are you? Thank you. Thanks for having me.
Bill Gasiamis 1:24
Thank you for being here. Before we do have that conversation about stroke awareness, stroke prevention, and supporting people during those stages where they’re having their stroke or their stroke is occurring. Tell me a little bit about yourself and the work that you do.
Dr. Violiza Inoa 1:42
So again, my name is Violiza Inoa, I’m at the stroke in neurointervention, in Memphis, Tennessee, the United States. I am a neurologist by training by background, and I dedicate my life to seeing stroke patients for prevention, but also for hyperacute treatments in post-stroke care.
Bill Gasiamis 2:07
Your work has got you to this stage of your career where you’re encouraging you want people to know something about stroke, you want them to know that stroke is treatable. And do you have a sense that there is a feeling in the communities that you deal with, or the people from the community deal with that stroke is not treatable, that it’s some kind of a condition that when it occurs, it’s devastating, and it’s life-altering and life-ending?
Dr. Violiza Inoa 2:44
Yeah, no. And it’s not just a feeling. I’ve had my personal experience with that, you know, with many patients that do not recognize stroke as an emergency or as a treatable condition. However, there’s a lot of data behind it data from the community from different states.
Dr. Violiza Inoa 3:08
We know what is going on. The majority of Americans nowadays, know that stroke is an emergency. But if you were to ask if they would call 911, less than half would seek emergency treatments. Many, many, many people in the population would say that they would recognize stroke symptoms, but they would not seek any medical help.
Dr. Violiza Inoa 3:46
And the reality of it is that we’ve lived in a culture where people believe that if they had a stroke, they’re doomed, that there’s nothing they’re going to do about it. That stroke leads to death and disability. And that’s it, that there’s no opportunity for treatment. And we are here to tell you that that is not true stroke is a treatable condition. I think, for many years, many of us have spent a lot of our energy in educating the population about stroke prevention.
Dr. Violiza Inoa 4:23
And I think that’s important, talking about the importance of recognizing high blood pressure and diabetes, high cholesterol, on healthy lifestyle, treating those conditions to prevent heart attacks and stroke. But I think we’ve spent less time talking about treatments and the reality is that the treatment of a stroke is one of the most impactful treatments in medicine and we can talk a little bit about what that means in a few minutes.
Getting ahead of stroke campaignBill Gasiamis 5:00
So the whole reason this podcast exists is because there is a gap in the support for people who have had a stroke. And then when I had my hemorrhagic strokes and then had to have brain surgery, and then I had to learn how to walk again, and all those things, I didn’t have anyone sort of reaching out to say, Hey, this is going to be okay, we’re going to work it out, you’re going to get through that in 10 years, you’re going to be in a better position.
Bill Gasiamis 5:27
Maybe you’ll have some physical challenges, but you might have been able to grow from this psychologically or emotionally or in many other ways. And the biggest challenge is that I did a lot of support work in my time after the first bleed. I did a lot of work for the Stroke Foundation here in Australia, where we did all of the awareness campaigns. But my anecdotal experience was that the awareness campaigns and this is not true, entirely.
Bill Gasiamis 6:06
But we’re falling on deaf ears and the audience that needed to hear them. Those awareness campaigns were not there when I was presenting to the people who needed to hear how to prevent stroke, we’re not there. So then what was happening, we were discovering that in my interviews, I was discovering people who had had a stroke and were young, like me in the 20s 30s, or 40s, even in their 50s.
Bill Gasiamis 6:36
And they were “I’m fine, there’s nothing wrong with me, it’ll pass I’ll have a headache medication, or I’ll go to bed and sleep it off” and of course, those people are in the category of I’m not old enough to have a stroke. So it must not be a stroke. And then the people around them, their family, friends, colleagues, also, there wasn’t enough awareness of what stroke is, but that was very easily convinced by the person.
Bill Gasiamis 7:09
Even though their instincts told them. Something’s not right with my colleagues, they’ll very easily convinced when the person says, I know, I’m okay. I’m just gonna go lie down, I have a headache. So, what you’re saying, and what I’ve experienced anecdotally, really does align there. And over 300 episodes now, and we’re starting to understand that what people SRECS fibers need is more information.
Bill Gasiamis 7:42
And as we get more information about recovery, people are contacting me going, Oh, this is a fantastic resource. I didn’t know that it was possible to overcome these challenges. And I suppose one of the other issues, Doctor is that when we are treated? I don’t know if there are a lot of doctors that share your enthusiasm. About the possibility of recovery and overcoming. Why are you so enthusiastic? Why do you believe that we need to be telling people that recovery is possible?
Dr. Violiza Inoa 8:22
Well, your story thanks for sharing. And it has many important points, and I think we can unpack a few of the things that he just mentioned. So first of all, there are two types of stroke. One of them is the lack of blood flow to the brain a clot that is called ischemic in medical terms, that’s about 87% of the stroke.
Dr. Violiza Inoa 8:52
And there’s brain bleed. There’s hemorrhagic stroke, which is the minority of stroke, and both of them are equally devastating, potentially right. Both of them can present with similar symptoms or stroke symptoms. And I think it’s important to go over some of the stroke symptoms and we can stop here and make this parenthesis and talk about the mnemonics that we have.
Dr. Violiza Inoa 9:21
One of them is the BEFAST. B stands for balance, loss of balance vertigo spinning sensation inability to walk. E stands for eyesight. So, sudden blurry vision or vision loss or double vision even F stands for face, face drooping. Stands for arm, arm weakness, and leg weakness, as well as S for speech, inability to speak correctly, slurred speech, unable to find words unable to read to write, and T stands for time, time to call 911.
Dr. Violiza Inoa 10:06
So, those are the stroke symptoms, and they can happen with both ischemic lack of blood flow, hemorrhagic bleeding stroke, and what happened to you was a bleeding stroke. Both types of stroke need to be identified and treated right away. So let’s talk about the more common stroke, which is the ischemic stroke, like you said, about 87% out of the 100 stroke patients 87 will have an ischemic stroke.
Dr. Violiza Inoa 10:46
In the United States, it’s about like 800,000 people per year, it happens every 40 seconds, and someone will have a stroke in the United States overall stroke. So if we go back to the ischemic stroke, it can also happen to anyone at any age, right? What is different is the cause of stroke is going to be different across ages. So someone who is 18 can have a stroke, and someone who is 60, 80, 90, or 100, can all have a stroke.
Dr. Violiza Inoa 11:28
The causes can vary a little bit, right, regardless of the age, they need treatment, stroke is a treatable condition you were saying. And the fact of the matter is that I know you’re in Australia, we are in the United States, we are developed, we have great stroke systems. Stroke Treatment doesn’t happen at home, we have to call 911. Although I know that in your country, you have a lot of people who are not necessarily close to stroke centers.
Stroke Treatment Including Emergency Response Times And Medical InterventionsDr. Violiza Inoa 12:12
However, I know that the systems work because we have worked and we know doctors from Australia. And I know how they can take care of stroke patients over there. So the more or the most important thing is that people after they have the symptoms, they call 911. Because that starts the triage system, and the patients can get to the emergency department where stroke can be treated.
Bill Gasiamis 12:45
Yeah, in the main cities, we have stroke units in the hospitals. And what’s cool is recently some of those hospitals rolled out specific stroke, ambulances. And that means if our emergency services triple zero if we call triple zero, and we request an ambulance, and we say I think that somebody is having a stroke, there is a possibility that they will send the stroke ambulance, which is just an amazing resource.
Bill Gasiamis 13:20
What I’ve found is the response time by the medical organizations has been such that it’s decreasing the amount of time that it takes to get a suspected stroke patient to the hospital. And that by have even heard of stories where people have had a stroke. And they are compared to me and some other stroke survivors, people who have had other ischemic strokes, they’ve been able to have the cause of the clot removed or treated with TPA, and as a result, have a fantastic outcome.
Bill Gasiamis 14:01
And even though they have some, you know, some deficits or some challenges, they are far better off than they would have been if they waited a lot longer. Tell me a little bit about the way that you guys can treat somebody who turns up at an emergency department and is having an ischemic stroke. How, do you go in and support them to improve blood flow or to get blood flow back to the brain?
Dr. Violiza Inoa 14:36
Yeah, no. And I’ll get to that. But I think I want to highlight the fact that you’re talking about the stroke ambulance. So last time we checked there were about 40 stroke ambulances in the world and for the people that are listening, what that means is that there is a more expensive ambulance. But it’s a bigger ambulance that has a CAT scan inside of the ambulance.
Dr. Violiza Inoa 15:13
And what that means is that the people that are riding in the ambulance, they have the knowledge, the radiological knowledge, they have nice text, they have people that can draw labs, they have the first line of treatment when indicated, which is TPA, TNK thrombolytic. And those are clot-buster medications. So they are harbored in the ambulance.
Dr. Violiza Inoa 15:44
So people can be treated right away. But I have to say that that’s the VIP treatment, right? So we do have one I live, in Memphis, Tennessee, and we do have one as part of the University of Tennessee, we were doing some research. And it works. Good data suggests that people who ride on the stroke ambulance are treated faster. So we have some experience with that.
Dr. Violiza Inoa 16:11
Now, I want to make sure to the audience that the audience understands that not everyone is going to get the stroke ambulance at their doorstep. And that doesn’t matter. Because, you know, our systems of care are built to treat stroke patients. And what happens is that if I’m having symptoms of a stroke, I call 911. And I forget about the stroke mimics meaning I forget about if this is not a stroke, or if this is a stroke, I’m not the doctor, right?
Dr. Violiza Inoa 16:50
If I was a patient, I’m not trying to diagnose myself, all I’m trying to do is to activate the system, the system is activated. Great data saying that once the EMS paramedics call the hospital word stroke can be treated, say a stroke patient or potential stroke patient is coming in. Once a patient arrives at the ER, there are a lot of people waiting for this patient. To start this triage in the emergency department. The first step is to get a CAT scan like you suggest that people bleed in the brain.
Dr. Violiza Inoa 17:30
And we could not get the clot buster medications to the people that have bled. So we need to identify ischemic or lack of blood flow. And then we give that medication. As soon as we can, the faster, the better. Then we do a special CAT scan that highlights the vessels. And then if the arteries of the brain are blocked, we identify a big artery that has been blocked, and then there’s a procedure that is indicated that is called thrombectomy.
Dr. Violiza Inoa 18:07
So physicians, like myself, many physicians, we have them in Australia, they go from inside the vessels, or tiny vessels, either from the wrist or from the groin. This is a minimally invasive procedure. This is not open skull or brain surgery. This is inside the vessels. They navigate through the vessels as big pipes. And then we go to the brain and with devices, we get the claws out. And it’s it’s amazing. How fast we can do this procedure, how minimally invasive they are, and how much better the patients can get.
Bill Gasiamis 18:55
Yeah, it is amazing. Are there some risks to doing that procedure? What are the challenges with doing the procedure? And then clearly we know the benefits. If it goes well, where I’ve had a lot of them that have gone well, then we can improve blood flow very, very rapidly. So first question, what are the risks of doing a procedure like that?
Dr. Violiza Inoa 19:26
Yeah, absolutely. So that’s a good question. For the benefits, we know, that the number needed to treat patients to get better is 2.6 which is amazing. It’s better than any other procedure, even medications in the history of medicine. So the downside of the procedure is minimal. But for example, the procedure uses contrast dye so patients can get allergy II to the conscious die and that is treated with medications such as steroids, even Benadryl, you know, anti-allergic medications.
Dr. Violiza Inoa 20:10
So sometimes the procedure is under anesthesia, that general anesthesia. So there are some risks related to the anesthesia in the procedure. Sometimes as we go through the vessels, we can injure some of the vessels we get through. So we can call tear of the vessels, etc, most of the time that heals itself, or we give aspirin or medications, such as aspirin to treat them. Sometimes, the complications can be devastating, you know, we’re trying to get the clots out of the brain that causes bleeding in the brain, etc. This is the minority of the time. And in fact, when if we have a complication, or if we were to encounter a problem, we will try to fix it right away.
Intro 21:06
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind, like how long will it take to recover? Will I recover? What things should I avoid? In case I make matters worse, and doctors will explain things that, you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery.
Intro 21:36
If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called Seven Questions to Ask Your Doctor about your Stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, but they’ll also help you take a more active role in your recovery, head to the website now, recoveryafterstroke.com and download the guide. It’s free.
Getting ahead of stroke, and family decision-makingBill Gasiamis 22:06
Yeah, I do hear from many patients who have had that procedure and it’s gone fantastically well. There are some patients, some of my guests who have had some challenges with a few additional complications. All of the people that I’ve spoken to seem to be grateful that they were able to have the procedure, even though there were complications, even though there were some challenges that they were very unwell at the time of the prevention, of the procedure being provided.
Bill Gasiamis 22:46
And as a result of that, the outcome might have been a lot worse, if they didn’t have the procedure. The challenge is that family members often struggle with these decisions. I think one of the reasons they struggle is because they may not understand how unwell their loved one is, and making decisions like that is difficult. I’ve even had somebody contact me and say, I think I made the wrong decision about allowing the doctors to intervene in my husband’s stroke.
Bill Gasiamis 23:19
And it’s like, why would you think that, and it’s because he’s very unwell now. And I decided without thinking about it and all those types of things. But in that particular case, I feel like this lady also now feels like that without an intervention. That outcome may not have been as good as it is now. And this particular stroke survivor has had an amazing recovery.
Bill Gasiamis 23:47
And I’ve followed him for about 10 years. And even though he may have hemiplegia, he is living an amazing life. He can become a member of his community, he’s able to participate and go back to work in some capacity. He’s become involved in creative outlets, and he has been involved in the production of shows and all that kind of stuff. So it seemed very, very bleak at the beginning, and it was, but that type of intervention has allowed him to find a way back into an amazing life even though it has its challenges and difficulties.
Dr. Violiza Inoa 24:36
Yeah, and I want to expand on what you’re saying because it’s it’s very important to understand that not every patient is going to be the same. Right. So we have different baselines, you know, we function the Frequently, we have other comorbidities. And also we do different things. So for example, someone who drives for a living a taxi driver might think that if they were having a stroke that just affects their vision that’s going to be disabling, versus someone who is retired and is living at home.
Dr. Violiza Inoa 25:29
And it’s not like you do not want to see, however, your vision is not going to impair you from making a living. So there are so many aspects to this, this is very interesting. But something that I have to address is that time is brain. And it has been probably the most important factor that we that we know about is stroke treatments, early interventions are going to favor our patients.
Dr. Violiza Inoa 26:06
There are studies out there. There’s a beautiful paper by Dr. Savor talks about the quantification of neuron loss. So for example, if we were to have a stroke and not get treatment, for every hour of not being treated, we age 3.6 years, millions of neurons go by. So time is of the essence, and I understand where you’re coming from, you know, those are very important critical decisions.
Dr. Violiza Inoa 26:53
But even the time that a family member takes trying to understand and grasp in, in get a lot of knowledge about what’s going on, that is detrimental to the patient, unfortunately, so in many centers in the United States, and I would like you to share what you guys are doing over there.
Dr. Violiza Inoa 27:17
But we treat thrombectomy as an emergent procedure, of course, we want to talk to the family. But even if we do not reach out to these family members, we go ahead and talk to other physicians, and as long as everyone is agreeable, we go ahead and treat the patient. And then we ask questions later because we know that if we lose the time, there’s less likelihood that this patient is going to get better.
Stroke disparities in different communities, and lack of awarenessBill Gasiamis 27:50
I like the sound of that. Deciding to treat the patient, I think in that scenario is very important. According to the stats, nearly 2 million brain cells die every minute a stroke goes untreated. It sounds like a lot of brain cells.
Dr. Violiza Inoa 28:09
That is a lot of brain cells, a lot of brain cells and across the board, when we look at treatment with plug booster medications and treatment with thrombectomy, which is the unblocking procedure, we know that time is one of the most important factors. So we need to act fast. You know, going back to the beef fast mnemonic. Yeah,
Bill Gasiamis 28:45
I like to be fast. In Australia, we don’t talk about the beef fast, so much, we mostly talk about the FAST. I like to be fast because it does add that level of B loss of balance and E loss of eyesight, which is which are very common symptoms of stroke. But we seem to focus on all the other ones which are also important. But I love that BEFAST version is a little more, covers a few more people and perhaps gives a little bit more awareness of what stroke can look like on somebody who’s in front of you, whether they’re a loved one or somebody or a work colleague.
Bill Gasiamis 29:29
There also seem to be some stroke disparities. Now some communities are more likely to have a stroke, who are those communities and what are the challenges that they face as the above two? And who are the other communities where’s the difference? There are disparities.
Dr. Violiza Inoa 29:52
So absolutely. I am Hispanic Oh, so our community has a high risk of stroke, sometimes types of stroke, black people have more likelihood of having stroke because of genetics could be because of socioeconomic situations, it’s very multifactorial, with higher rates of high blood pressure, higher rates of diabetes, in my community, the Hispanic community and in the black community.
Dr. Violiza Inoa 30:32
So Asians will have more plaque built up in the brain. So even younger, Asians will have stroke more promptly because of this reason, and then access to care, right? So lower socioeconomic status will probably have less access to care, and lack of insurance, many people who would not go to doctors will lack education, but also finances. So they are concerned about the hospital bill, paying for an ambulance, what it’s what what is it going to cost in all of those factors will contribute to the socio-economic and racial disparities in stroke treatment.
Dr. Violiza Inoa 31:25
I have to say that your race, your age, and your background do not preclude you from having a stroke, and do not preclude you from getting treatment, we treat all comers. And again, time is the most important thing, because after some time, patients will fall outside of Windows, right? So there’s a time window for the clot buster medication, there’s a time window for the thrombectomy and the old clot in the vessels. So if you fall outside of the time trying to wait out your symptoms, you’re not going to get treated.
Bill Gasiamis 32:14
Yeah. Doctor Inoa, you know, in those communities, is that there isn’t enough awareness about the fact that if you belong to a particular group of people, you’re more likely to have a stroke. And therefore, when you see somebody, you might suspect a stroke more quickly. But why is it that not only will black communities Hispanic communities and Asian communities be at greater risk of stroke?
Bill Gasiamis 32:52
But is it that they also are not taking action to are those communities not educated about that higher risk, and therefore, making decisions that are money based, or making decisions that are culturally based about doctors or anything like that, what other things are happening in that space that stops people from getting treatment from those communities?
Dr. Violiza Inoa 33:17
I can tell you, and obviously, I would not want to generalize, because there’s education across the board. But definitely, lack of education plays a big factor. And, obviously, lack of awareness, lack of getting appropriate medical care, lack of identifying the symptoms, not going to the hospital not calling 911. So for example, we live in Connecticut, excuse me, we live in Memphis, Tennessee, I don’t know I trained in Connecticut.
Dr. Violiza Inoa 33:58
So it came up to me but I live in Memphis, Tennessee, in the south of the United States under the stroke bill. And in reporting data is mandatory mandated by the state, you know, from the different hospitals in you cannot imagine the majority of people will drive, you know, through these rural areas to try to get to the hospital to get treatment for a stroke.
Dr. Violiza Inoa 34:26
And that is just a lack of awareness and knowledge. Because if they only knew different, you know, they would call 911. And I mean, there’s there’s a lot of there’s a big taboo as well. In my Dominican community, for example, if you have a stroke, you’re done. You know, there’s there’s nothing afterward. That is the cultural belief, which as you know, it’s just absolutely not true.
Dr. Violiza Inoa – Diagnosis and treatment, including when to call 911Bill Gasiamis 35:00
It’s interesting that thing you said about people driving. Now, I know a lot of people who have said they’ve driven to the hospital to avoid a hospital bill or ambulance bill, and I get it at that moment. Firstly, you don’t think you’re having a stroke. Secondly, you know that the bill is going to be expensive, you’d like to avoid that if possible. But during that drive, you’re missing the opportunity to be treated by an EMT.
Bill Gasiamis 35:28
So even if it’s not a stroke, or ambulance, which it most likely won’t be, you’re still missing the opportunity to get treated and be cared for. And for tests to be done and things to be determined so that they can be reported to the ER so that when you arrive there, things can be action can be taken appropriately. Also, you’re putting other people at risk by driving because if the stroke that we’re experiencing gets worse, it could mean that we end up having a collision, making it worse for ourselves and making it worse for other people around us.
Dr. Violiza Inoa 36:09
Yeah, and I have met people who get to the hospital, and they spent hours waiting in the ER, just to get triaged, let’s say your stroke symptom is a little bit of numbness in one arm. And let’s say it’s the eyesight, it’s the vision, oh, blurry vision that can be about anything. However, now, it can end up being a big, big stroke.
Dr. Violiza Inoa 36:42
And sometimes there’s a pro drum, you start with milder symptoms, milder symptoms can be also associated with large clots, right, so things can get worse, etc. So acute care and diagnosis are absolutely important. And yeah, I’m completely against driving into the hospital because of all of the reasons that he just expressed.
Bill Gasiamis 37:20
In the scenario of an ischemic stroke, thrombectomy. And medications are great interventions, how do doctors support people who are having a hemorrhagic stroke? What are some of the interventions that can help decrease blood loss and blood entering the brain?
Dr. Violiza Inoa 37:43
The best intervention is the diagnosis and the lowering of the blood pressure. And that has to be that needs to be done hyper acutely. So there’s great data that we know, suggesting that or demonstrating that controlling that blood pressure aggressively, immediately after the bleed, will decrease, disability will decrease rates of death, right? So, rapid approach to the acute management of the patients, patients would bleed when they come in and they can be very sick.
Dr. Violiza Inoa 38:30
So they cannot protect the airway, and sometimes they are altered. So protecting, you know, the ABCs of medicine, right making sure that the patients are stable, that the blood pressure is adequately controlled, and also getting in many cases, a CAT scan of the vessels or CTA is very important, because depending on the age and the type of the bleeding, people can have brain aneurysms, vascular malformations, and those things need to be treated. So it’s equally important that people with hemorrhagic stroke arrive at the emergency department as soon as possible as well.
Bill Gasiamis 39:20
Yeah. And of course, when you’re a patient, you won’t know if you’re having a hemorrhagic stroke or an ischemic stroke. But the symptoms are very similar, or the things that we experienced are the same. So it’s just as important to take action and don’t worry about what you think is happening. Just take action because of what is happening and what you notice.
Bill Gasiamis 39:42
I’m curious, Dr. Inoa what, in the whole process. When do neurologists become involved? So initially, I imagined the first phone call 911 in America or 000 in Australia. do you deal with an ambulance, the ambulance takes you to the ER, and then from the ER, you might get a CAT scan, and you might get admitted to a ward. What part of the process? Does the neurologist become involved in the patient? And what type of role do neurologists play?
Dr. Violiza Inoa 40:19
So that is a great question because it’s going to depend on the type of hospital that you get to. In the United States, we have highest level would be a comprehensive stroke center, we have primary stroke center, we have a stroke, writing hospital, depending on the staff, and the availability of stroke treatments, then we classify the hospital as LS, a stroke neurologist, or a neurolos not going be everywhere, but definitely will be at the Comprehensive Stroke Center and the primary stroke center.
Dr. Violiza Inoa 40:58
So it is more likely that in the majority of the hospitals, you’re going to be seen treated triaged, and treated by the emergency department. So they are capable. And they know all of the stroke protocols. And also, they know how to quantify strokes, and they know when to refer. So part of the triage system that we have, and I think that I cannot be more repetitive we call we need to call 911 because the ambulance, and the EMS providers, will know where stroke is treated and where the specialists are going to be.
Dr. Violiza Inoa 41:46
And for example, if they identify someone that is having a stroke, or symptoms of let’s say, a large vessel stroke, right, they will come they will more likely route that patient where there is a neurologist, where there’s a neuro interventionalist where the people can get CAT scans of the vessels, advanced neural imaging, there’s a neuro ICU, etc.
Dr. Violiza Inoa 42:14
Usually where neurologists work, they usually become part of a triage of a stroke. As soon as the patient arrives at the emergency department, which is something that probably that’s where you were going to write, you don’t have to wait. Once you come to the ER with the stroke symptom, the neurologist is waiting for you or someone who belongs to the neurology service. triaging stroke patients will be waiting for you.
Bill Gasiamis 42:48
And most importantly, what you said was that everyone you deal with is going to be in a position to diagnose, treat, and support somebody who’s having a stroke, that presents to the ER. So from EMTs to paramedics, to registrar, nurses, to every single person who you’re going to come across is aware of the stroke protocol. I appreciate your time, what are some of the last few messages we can give to people who are listening?
Dr. Violiza Inoa 43:26
Absolutely. So Well, thanks for the opportunity. I think this matters anywhere we are. And thank you for sharing your story. And I think it’s extremely important what you’re doing. And I’m glad to see you walk up talking, you know, process everything and being great. Because that is a great example. I think the final message is probably a long one Stroke can happen to you and any of your family members.
Dr. Violiza Inoa 44:00
Regardless of your background or your age, the stroke is treatable. It is survivable. And I think we are blessed in your country and in the country I live in that we have access to treatment. So we need to understand how to identify stroke symptoms, to call 911 to get treatments. Again, we are blessed with systems of care that will support stroke patients and will bring their lives hopefully back to their baseline and their lives can be better or the same as they were before.
Bill Gasiamis 44:48
I completely agree with that. I have some deficits left side numbness proprioception issues and a whole bunch of stuff but things improved things that are getting better. I’m an example of that the 300 other people that I’ve interviewed are an example of recovery and the possibility of recovery.
Bill Gasiamis 45:09
Everyone is fighting the good fight, and they are going after recovery. They’re great examples of what’s possible. It’s possible because of amazing people like you without amazing people like you and all the people who work with you and around you. We wouldn’t be here. So we are grateful. And thank you so much for your time. I wish you all the best.
Dr. Violiza Inoa 45:33
I appreciate it. Thank you.
Bill Gasiamis 45:34
Thanks for tuning into today’s episode. For more insights into our guests and access to a transcript of the entire interview, head over to recoveryafterstroke.com/episodes. And to all those who have shared feedback. Your reviews mean the world they not only fuel this podcast but also like the way others are on their stroke recovery journey. If you haven’t left a review yet, why not share your thoughts on iTunes or Spotify? And if you’re watching on YouTube, drop a comment below.
Bill Gasiamis 46:07
Give this episode a thumbs up and hit the subscribe for more updates. To all stroke survivors out there. Your story is welcome here. raw and unfiltered. Your journey has the power to inspire and uplift others facing similar challenges. And for those offering innovative products or services.
Bill Gasiamis 46:26
For stroke survivors, let’s talk about collaborating on a sponsored episode of the show. Just head to recoveryafterstroke.com/contact to start the conversation. Thank you once again for your presence and support. Together we navigate the journey of recovery one episode at a time until the next time, take care, and stay resilient.
Intro 46:48
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. The opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed all content on this website and any linked blog, podcast, or video material controlled by this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis.
Intro 47:17
The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances, or health objectives. Do not use our content as a standalone resource to diagnose treat, cure, or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.
Intro 47:42
Never delay seeking advice or disregard the advice of a medical professional, your doctor, or your rehabilitation program based on our content. If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be called 000 in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.
Intro 48:07
Medical information changes constantly. While we aim to provide current quality information in our content. We did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency, or completeness of the content. If you choose to rely on any information within our content you do so solely at your own risk. We are careful with the links we provide however third-party links from our website are followed at your own risk and we are not responsible for any information you find there.
The post Get Ahead of Stroke Campaign – Dr. Violiza Inoa appeared first on Recovery After Stroke.
Adaptive Yoga for Stroke Recovery: A Comprehensive GuideIntroductionWelcome to our comprehensive guide on adaptive yoga for stroke recovery. In this article, we delve into the therapeutic benefits of adaptive yoga for stroke patients and how it can aid in the rehabilitation process.
Understanding Stroke RehabilitationStroke rehabilitation is pivotal for aiding stroke survivors in regaining independence and improving their quality of life. While traditional rehabilitation methods are crucial, integrating complementary approaches like adaptive yoga can enhance the overall recovery journey.
The Therapeutic Benefits of Adaptive YogaAdaptive yoga is a modified form of yoga that accommodates individuals with varying abilities and physical limitations. For stroke patients, adaptive yoga offers several therapeutic benefits, including:
- Customized Modifications: Adaptive yoga instructors tailor poses and sequences to meet the unique needs and abilities of stroke survivors, ensuring safety and effectiveness.
- Improved Mobility: Gentle, modified yoga poses help improve mobility and range of motion, addressing common post-stroke challenges such as muscle stiffness and weakness.
- Enhanced Mind-Body Connection: Adaptive yoga emphasizes mindfulness and body awareness, fostering a deeper connection between mind and body, which is essential for stroke recovery.
- Emotional Well-being: The calming nature of adaptive yoga promotes relaxation and reduces anxiety and depression commonly experienced by stroke survivors.
- Community Support: Participating in adaptive yoga classes provides stroke patients with a supportive community of fellow survivors, fostering a sense of belonging and camaraderie.
Incorporating Adaptive Yoga into Stroke RehabilitationIntegrating adaptive yoga into stroke rehabilitation requires careful consideration and collaboration between healthcare providers and certified yoga instructors. Here are some tips for incorporating adaptive yoga into a stroke recovery program:
- Professional Guidance: Stroke survivors should consult with their healthcare team and seek guidance from certified adaptive yoga instructors to ensure that the practice is safe and appropriate for their individual needs.
- Accessible Props and Equipment: Utilize props such as blocks, straps, and chairs to make yoga poses more accessible and comfortable for stroke survivors with mobility limitations.
- Focus on Breath Awareness: Emphasize breath awareness and gentle breathing techniques during adaptive yoga sessions to promote relaxation and stress reduction.
- Encourage Self-Compassion: Encourage stroke survivors to practice self-compassion and acceptance, recognizing that progress may be gradual and non-linear.
- Celebrate Progress: Celebrate small victories and milestones achieved through adaptive yoga practice, fostering motivation and a positive outlook on the recovery journey.
ConclusionIn conclusion, adaptive yoga is a valuable and inclusive approach to stroke rehabilitation, offering a range of physical, emotional, and social benefits for survivors. By incorporating adaptive yoga into the recovery process, stroke patients can enhance their overall well-being and resilience on the path to recovery.
Remember, adaptive yoga offers a personalized and supportive environment for stroke survivors to explore movement, mindfulness, and healing. With dedication and support, adaptive yoga can empower stroke patients to embrace their journey of recovery with strength and resilience.
Full Interview With Stacie WyattStacie Wyatt is no stranger to how neurological challenges can impact life. As a mother of a child with a neurological condition from birth, she turned to adaptive yoga to help herself and others.
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The post Adaptive Yoga For Stroke Recovery – Stacie Wyatt appeared first on Recovery After Stroke.
Understanding Brain Stem Stroke: Symptoms, Causes, and TreatmentBrain stem stroke is a serious medical condition that requires prompt attention and awareness. As a life-threatening event, understanding its nuances, symptoms, causes, and treatment options is crucial for both patients and caregivers. In this article, we delve into the depths of brain stem stroke, providing comprehensive insights to empower individuals with knowledge and resources.
Unraveling Brain Stem StrokeThe brain stem, situated at the base of the brain, controls vital functions like breathing, heart rate, and blood pressure. When a stroke occurs in this region, it disrupts these essential functions, leading to potentially severe consequences. Unlike other types of strokes, brain stem strokes can present unique challenges due to the intricate network of nerves and arteries in this area.
Symptoms to Watch ForRecognizing the signs of a brain stem stroke is paramount for early intervention. Symptoms may include:
- Sudden weakness or numbness on one side of the body
- Difficulty speaking or understanding speech
- Vertigo, dizziness, or loss of balance
- Impaired vision, double vision, or difficulty swallowing
- Severe headache, often described as the worst headache of one’s life
Given the critical functions controlled by the brain stem, any suspicion of a stroke warrants immediate medical attention.
Causes and Risk FactorsBrain stem strokes typically result from a disruption in blood flow to the brain stem, either due to a blood clot (ischemic stroke) or a ruptured blood vessel (hemorrhagic stroke). Several risk factors contribute to the development of brain stem stroke, including:
- High blood pressure
- Diabetes
- Smoking
- Obesity
- Family history of stroke or cardiovascular disease
While some risk factors are modifiable through lifestyle changes and medical intervention, others, such as genetic predispositions, require proactive monitoring and management.
Diagnosis and TreatmentDiagnosing a brain stem stroke often involves a combination of medical history evaluation, physical examination, and imaging tests such as CT scans or MRIs. Once diagnosed, immediate treatment is crucial to minimize damage and improve outcomes. Treatment options may include:
- Clot-busting medications (thrombolytics) for ischemic strokes
- Surgical interventions to remove blood clots or repair damaged blood vessels
- Rehabilitation therapies to regain lost functions and improve quality of life
The effectiveness of treatment largely depends on the timeliness of intervention and the extent of brain stem damage.
Empowering Through EducationIn the digital age, access to reliable information plays a pivotal role in healthcare decision-making. While websites like Stroke.org provide valuable resources, it’s essential to supplement such knowledge with diverse perspectives and expert insights. By leveraging reputable medical sources, educational materials, and professional networks, individuals can gain a deeper understanding of brain stem stroke and its implications.
ConclusionBrain stem stroke is a formidable adversary, but armed with awareness, early detection, and comprehensive treatment strategies, individuals can confront this challenge with resilience and hope. By fostering a culture of education, advocacy, and support, we can collectively work towards reducing the burden of stroke-related disabilities and improving the lives of those affected by this debilitating condition.
Through continued research, innovation, and community engagement, we can pave the way for a brighter future—one where brain stem stroke is not just understood but conquered. Let us embark on this journey together, uniting our efforts to create a world where strokes are no longer a threat but a conquerable obstacle on the path to health and well-being.
Full Interview with Jamie & Jessica RobinsonJamie and Jessica Robinson joined me to discuss their experience with a brain stem stroke from the perspective of both caregiver and patient.
Highlights:
00:00 Introduction
00:30 The first sign of brain stem stroke
09:48 Being in the ICU for 25 days
16:49 Waking up for the first time
18:54 The deficits after the brain stem stroke
27:04 Recovery, work, and voice challenges
38:44 Setting recovery deadlines
45:37 A piece of health advice
50:35 The benefits of having a supportive family during a difficult time
1:03:29 What’s next for Jamie & Jessica Robinson
1:06:25 The three questions
Transcript:
Introduction – Brain Stem StrokeBill Gasiamis 0:00
Hello, everybody, this is episode 301. And my guests today are Jamie Robinson and Jessica Pope Robinson. The husband and wife team have been regular listeners to the Recovery after Stroke podcast and reached out recently to join me on the show to share their respective stroke stories after Jamie experienced a brain stem stroke, at age 49.
Bill Gasiamis 0:23
Jamie and Jessica Robinson, welcome to the podcast.
Jamie Robinson 0:27
Thank you. Nice to be here.
Jessica Robinson 0:28
Thank you for having us.
The first sign of brainstem strokeBill Gasiamis 0:30
Lovely to meet you both I’m just trying to work out which way to go with this particular interview. But let’s start with Jamie. Jamie, tell me a little bit about what happened to you.
Jamie Robinson 0:43
Well, I think it was November 5, 2022. I woke up in the middle of the night at 5 a.m. with a severe leg cramp and ended up having a stroke in the process. So she called 911. And a few months later, I woke up in the hospital.
Bill Gasiamis 1:15
Wow. Okay. So you recall having a leg cramp? Is that what woke you?
Jamie Robinson 1:20
Well, that’s what she says I don’t remember anything.
Bill Gasiamis 1:25
So do you know that you were having a stroke? Do you know anything?
Jamie Robinson 1:31
No, I just know that I was getting ready to get up for the morning and get ready to go to work. And then I woke up a few months later in the hospital.
Bill Gasiamis 1:43
Talk about dramatic. How was that for you? Jessica, you woke up, was he looking like he was waking up? How was he acting?
Jessica Robinson 1:54
No, it was about 20 minutes before his alarm would go off at about 5:30 in the morning. And I was dead asleep. And he screamed the weirdest scream I’ve ever heard he screamed cramp. But it was just he screamed it in the sight of just a horrible way.
Jessica Robinson 2:12
And I woke up and turned on the light and looked at him, and I kept yelling at him to wake up and he wasn’t waking up. And he was shaking violently. And he has a kind of foam coming out of his mouth. And I called 911 as I was kind of screaming at him the whole time. And then I just kept screaming at him to wake up while we were waiting for the ambulance to get here.
Bill Gasiamis 2:42
Were you trying to get him aroused? Was it working? Was it doing anything?
Jessica Robinson 2:46
It wasn’t doing anything at all.
Bill Gasiamis 2:50
How long did it take for emergency services to arrive?
Jessica Robinson 2:54
Out 10 minutes.
Bill Gasiamis 2:56
Okay. So then there’s a whole bunch of time you go to emergency services arrive, and then from there, did you guys end up in hospital quickly? Is it near home? Where is that?
Jessica Robinson 3:10
Yes, the hospital is about five minutes from our house. So they were there pretty quickly. But actually, I was trying to get my keys and all that kind of stuff and let our daughter know that we were leaving. And when I got outside the ambulance had just pulled away which to me seemed odd because it seemed like it had taken a long time for them to leave. But now I know that it was because they were intubating him in the ambulance before they left.
Bill Gasiamis 3:45
Okay, so they’re going through the whole process. Already his respiratory system is not working properly, things are going wrong. And you’re waiting, thinking, Well, what’s going on? What are they doing? Why aren’t they moving?
Bill Gasiamis 4:03
That’s pretty normal. Because what you’re thinking is that just the hospital is where you need to be and everything will be fine. So you guys arrived at the hospital? And then what? What happens then and how do they keep you in the loop? How are you being communicated with what happened?
Jessica Robinson 4:21
So he has been taken aback. I’m still in the waiting room for about 10 minutes. Then they come out and they get me he’s in a room in the ER with probably, I don’t know, probably 15 people in it. I couldn’t even fit in and I sat on a chair outside the waiting room. And this lady who turned out to be the chaplain I did not know did not introduce herself as she was sitting next sent me the whole time with a box of Kleenex.
Jessica Robinson 5:03
And she kind of when they moved him to do surgery and things she sort of followed and my brain just couldn’t quite grasp what was going on. And I kept thinking, Well, I don’t think this is good that this woman won’t leave me alone. Which was very nice. But I just kept thinking that I’ve been in the hospital many times, and this has never happened before.
Bill Gasiamis 5:28
We’ll be back with my guest in just a minute. But first, let me tell you about my new book about stroke recovery. It’s titled The Unexpected Way That A Stroke Became The Best Thing That Happened: 10 Tools for Recovery and Personal Transformation. within its pages, you’ll discover the journeys of 10 remarkable stroke survivors. Each story illustrates how through resilience and perseverance, they turned their stroke experience into a catalyst for profound personal growth and transformation.
Bill Gasiamis 5:58
This book delves into various aspects of recovery, including nutrition, sleep, and exercise in managing the emotional aftermath of a stroke, as well as providing invaluable tips and tools for maintaining mental well-being. To learn more visit recoveryafterstroke.com/book. And if you’re eager to get a copy, simply search my name Bill Gasiamis on amazon.com. So you just think she’s a weirdo, admit it. Okay, so she’s the chaplain, you find out later, but she’s just trying to make sure you’ve got somebody next to you the whole time.
Jessica Robinson 6:38
Yes, exactly. So I called one of our older kids who worked nighttime. And he got off about seven. At this point, I was about seven, and I let him know what was going on. And he came to the hospital with me. And then, at this point, they had figured out that it was a blood clot. And it was, at this point, I didn’t know where it was located. But they just told me he had a stroke, and it was a blood clot.
Jessica Robinson 7:09
He had a mini-stroke in 2020. And they have put him on blood thinners. Because he was on those blood thinners. They couldn’t do the drugs to break up the clot. So they had to take him up and do surgery. So we went and sat in the waiting room up there, my son and I and his girlfriend, and the doctor came in and said they were gonna go back and do surgery. And they told me that his exact words were that it was in a very bad spot in the back of his brain. And it turned out it was on his brainstem.
Bill Gasiamis 7:57
And what surgery did they do? How did they retrieve that?
Jessica Robinson 8:02
That’s a great question. I’m not exactly sure. I know they just I think where they went up the leg and up there and they were not able to get all of it. But they got most of it. And then when the doctor came in the waiting room, he said that they had saved as much of his brain as they could, which I did not think was a very good sentence.
Bill Gasiamis 8:36
Although they’re trying to tell you, we’ve managed to save some of it. And that’s a good outcome you’re going that means there’s probably a lot that hasn’t been saved.
Jessica Robinson 8:47
Right? Yeah, exactly.
Bill Gasiamis 8:50
So all of this happened. It sounds like this is all the first 24 hours. Okay, and then he comes out of surgery and he’s taken to is it the ICU. Where does he go first?
Jessica Robinson 9:04
He is in the ICU. He was in the ICU for about 25 days.
Bill Gasiamis 9:13
Okay. Now I’ve had the difficult task of being in the ICU with a friend of mine whose daughter had a brain hemorrhage. And it’s not fun, because the condition of the person that you’re seeing is not responsive. You know, there’s a lot of stuff going on in there’s machines everywhere. It’s just an intense place, but it’s a really special place as well. Because if you’re going to be unwell from something like this, it’s the best place to be in for your potential recovery.
Being in the ICU for 25 days after the brainstem strokeBill Gasiamis 9:48
And I want to go back to Jamie for a second. In the first 25 days. Do you have any more recollection whatsoever? Is there any time when you felt maybe you saw the lights, as in the lights of the room, not the other ones? Did you have any idea that you were in the hospital and something was going on?
Jamie Robinson 10:14
It was so weird because I could hear conversations that were going on around me. I could follow what was happening in people’s lives. But it just kind of blended into the dream that I was having. Because for the whole time, I was in ICU. I was unconscious as far as I know. And I was having a dream where I was living a whole nother life. And day by day I listened to the stories that other people told, listened to stories about my mom needing an internet. And it just all blended in.
Bill Gasiamis 11:01
Okay. So you had some kind of awareness of conversations happening around you people turning up and things getting done and things happening around you. Jessica, were you guys telling him the stories of what his mom needed and all that type of stuff?
Jessica Robinson 11:21
No, his mom would just be in the room telling me what was going on. Because she just moved into a house and we’re just having kind of conversations. And apparently, he heard them.
Bill Gasiamis 11:33
Yeah, they didn’t say anything nasty, did they?
Bill Gasiamis 11:41
Well, we know better from now on never to do that in the ICU. Okay, so it kind of blends all in. And there’s no real understanding of how long you’re in there of really what’s going on what day it is, you just know that you’re somewhere else and something is happening around you. And you’re able to track it. Are you do you have any concerns? Do you feel, any feelings? Are you worried? Is there any other of that stuff going on? Or is it just not there?
Jamie Robinson 12:13
It’s not there. Like I said, during the whole time that I thought I was unconscious, I was having a dream, where I was living in another reality. But she says it now and then I come to and communicate somehow. But I don’t remember any of it.
Jessica Robinson 12:37
He was never unconscious after he got into the ICU, like when I got in there to visit him. He was awake, and they had told me when they came to the waiting room that the next 24 hours were key and that he hoped he wake up. And by the time I got into the ICU, he was awake, his eyes were open, and he was able to follow basic like, you know, squeeze my hand with all your toes kind of directions.
Jessica Robinson 13:15
His left side was affected. So that wasn’t as good as the right side. But he was able to follow those sorts of directions. So he was never really unconscious. I mean, he was intubated. Still, he was intubated for a very long time. So, they had him on medication. So they make him comfortable.
Bill Gasiamis 13:39
Okay, so it’s important, of course, after the surgery to work out, that he’s come good and that Jamie is there and things are working amongst other things that are not. But then at the same time to allow for the situation to continue in the process of recovery to continue to occur. He was intubated so that he didn’t have to worry about doing things like breathing, etc. And then he was sedated to just keep him comfortable and keep him healing. Then when long enough time passed, he could be sort of woken back up completely.
Jessica Robinson 14:28
Right. So they had him intubated for just the first day I think and then they took the tubes out and he had about 24 hours without them he could breathe on his own but he couldn’t cough. So fluid was building up and he was very, very weak and so his coughs were very, very, very weak.
Jessica Robinson 14:54
And he just couldn’t keep the fluid down. So they went ahead and put the tubes back in. And then he was intubated for another, about two weeks. And then they told me that they were going to have to, they took the tubes out again and tried for another 24 hours, and he could not do it. And they told me they were going to have to put in a trach.
Bill Gasiamis 15:23
In those 25 days, what are you guys doing? Or what is your routine? Like? How are you managing your day?
Jessica Robinson 15:33
It’s pretty much just at the hospital all the time, we have three teenage girls. So there was a lot of, you know, them staying at my parents or my parents staying here with them, or, his mom was in town, so she would spend the night at the hospital occasionally.
Jessica Robinson 15:53
And then if she wasn’t staying the night, I would stay the night, when we got to probably about three weeks or so after the stroke, we would go a night or two without staying the night. But not the first few weeks and they took good care of it. him it was just very hard to leave him.
Jamie Robinson 16:12
So we had really good doctors.
Jessica Robinson 16:16
And nurses, the nurses, and all the staff. Amazing. Yeah.
Bill Gasiamis 16:21
Yeah. They certainly do look like they did a good job because you guys are both here on the podcast talking about it. So let’s say, Jaime, are you able to tell us anything about those first few days after the sedation is sort of starting to decrease? And then all the breathing tubes are removed? Are you able to have any memories of that?
Jamie Robinson wakes up in the hospital for the first timeJamie Robinson 16:47
Well, when I woke up, I went and had a stroke on November 5. I woke up on December 17. And I couldn’t move my left arm, I could barely move my fingers. I could barely move my left leg. And I was trying to figure out what was going on. I was just why am I in the hospital. I’m trying to figure out why is everybody here. And I wasn’t scared. I was just confused.
Jamie Robinson 17:24
And then I started to get more and more information from family members. And my son was a little freaked out. He’s tudies up on everything. He gets introduced to something, he finds out everything he can about it. So he was very concerned. And then when I woke up, he was very relieved. So it was a challenge but not scary It was just like, what’s going on? The confusion.
Bill Gasiamis 18:01
And how did the family take it Jessica when he’s awake? And he started to communicate?
Jessica Robinson 18:08
Oh, it was a lot of relief. Just to know that he was still in there. And although he’s still, you know, couldn’t talk well, at first because of the trach and everything. Um, you know, he still had a sense of humor, he still was very similar to himself, our daughter mentioned that when she got to the hospital that first day everybody kept telling her that he was going to live.
Jessica Robinson 18:40
And she said I kept thinking, Oh, well, that’s great, but I don’t want to just live I want him to be my Dad, is he gonna be my dad? And so she was very relieved that she could see that. Although there have been some changes he is still himself.
The deficits after the brainstem strokeBill Gasiamis 18:54
Yeah, personality-wise and the way that you go about talking and thinking, etc. Okay, so what is different? We know the left sides have been impacted. To what extent is it still impacted?
Jamie Robinson 19:12
Well, I don’t have full control of my left arm yet, but I do move it quite a bit. Now. I can walk by myself without a cane. But I take a cane just in case. My mental faculties are there. But now and then I have a loss for words like now and then it’s just like, it’s on the tip of my tongue. I just can’t think of what it is. It should be something dumb like yellow.
Intro 19:49
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be. You’re likely to have a lot of questions going through your mind. How long will it take to recover? Will I recover? What things should I avoid? In case I make matters worse, doctors will explain things. But, if you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 20:14
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com, where you can download a guide that will help you it’s called Seven Questions to Ask your Doctor about Your Stroke.
Intro 20:33
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website now, recoveryafterstroke.com, and download the guide. It’s free.
Jamie Robinson 20:52
I seem to be a little more patient with my kids. I used to be a real hardass, I used to be a little more stubborn and demanded more respect and now it’s just like they get away with everything.
Bill Gasiamis 21:17
Yeah, I wonder why I’ve been there. I know what that’s like, it’s settled to sort of take the edge off that kind of shitty part of your personality and to just settle it down a little bit. You don’t know when you’re doing it at the time. But it is, you know, grinds people the wrong way.
Bill Gasiamis 21:40
And it just makes things a little bit uncomfortable on that. And then you realize, okay, maybe I can just settle down and just be a little less dramatic about things. So it was about 25 days, all up in the ICU. How long were you in rehab? Did you come home quickly? Or were you in rehab for an extended amount of time?
Jamie Robinson 22:05
25 days in ICU, about a month, and immediate care. And then about a month in rehab.
Bill Gasiamis 22:17
Wow. So isn’t it strange, like that day is supposed to just be a normal day? Everyone wakes up and goes to work. And then like three months later, that day still hasn’t ended? It’s just still, yeah, we strange thing that’s just working one day you wake up, and then three months later, you’re in this completely different place? How quickly did the time go by Jessica?
Jessica Robinson 22:44
Oh, gosh, um, in some ways, I think it felt like it went by fast. Because it just felt like it was just one very long day. I mean, it just woke me up. It was kind of like Groundhog Day, you just wake up and do the same things over and over again, you know, took an I took a leave from work and so it was just getting up, go to the hospital.
Jessica Robinson 23:10
And you know, and there were quite a few times when we got thrown off like after he was in an intermediate care, I forgot the ICU, everything was going better. And then he had a pulmonary embolism. So we had to deal with that. And that was scary. And then once he got to rehab I think it went faster because you can see the the improvement every day.
Bill Gasiamis 23:42
So how did the pulmonary embolism come to be?
Jessica Robinson 23:46
So well, that they had they put him back on life and put him on blood thinners a few days after his stroke. And then, um a week or so later, they felt like something was wrong. So they did an MRI and he was bleeding where his stroke was. So they took him off the blood thinners.
Jessica Robinson 24:11
And then he developed a DVT and that ended up being a pulmonary embolism. Multiple pulmonary embolisms as they said but they were able to just dissolve on their own. So then it was very scary because they came in and said we are worried that if he put him back on the blood thinners that he will bleed we are worried that if we do not put him back on the blood thinners that he will develop clots because he’s prone to clots.
Jessica Robinson 24:51
So there was I mean I had teams of doctors in the room talking to me different teams and The stroke team said we think he will be okay on the blood thinners, the hematology team so we don’t want to put him back on the blood thinners. And then they said, you have to make a choice.
Jessica Robinson 25:14
And that was probably one of the scariest moments of my life trying to figure out, you know, having somebody else’s life basically in your hands, not knowing if you’re going to make the right choice. But the stroke doctor convinced me that he thought we try the blood thinner and check him for blood bleeding. And because at this point, it had been about a month almost exactly since his stroke.
Jessica Robinson 25:40
And he thought that he was strong enough at that point, that the bleeding would stop that the blood thinner wouldn’t cause the bleeding, I should say. So. And that that did it they he went back on the blood thinners and he’s been on him ever since. So there was no bleeding.
Bill Gasiamis 25:58
I love the passing of the buck routine. There are medical professionals, they’ve got, you know, probably 1000s of years of education and schooling and experience in that space. And they go you know what, let’s just give it to somebody who doesn’t know anything about strokes. Like the decision.
Bill Gasiamis 26:18
I mean come on guys, I get what they they just sort of saying like, Wait, somebody has you have to guide us, you have to probably do the what are they thinking is maybe you’re going to do the what is your family members? The most likely response going to be? What would they want? And they’re hoping that you guys can guide and advise.
Bill Gasiamis 26:46
That’s interesting that they do that, that they make your decision, they should be able to just make the decision and then come to you with a suggestion. The most likely outcome in this scenario is the most likely outcome in that scenario. We are going to go with this. Do you agree with us?
Bill Gasiamis 27:04
Yeah, so, Jamie, what’s it like when you realize you can’t move your left side properly? And it’s not working? And then how to your, what are your thoughts about what’s next going to be necessary to get you back on your feet? Again? How are you thinking about all of those things?
Jamie Robinson 27:31
Well, the initial thought was, man, this sucks. I tried to lift my hand from the bag and put it on my leg, and then just wouldn’t move. So it’s just a battle of wills, almost a test. If I just give my hand to the rest of my leg, I’ll be good to go. So then at that point, I started realizing it was just day by day. If I can’t do it today, I’ll do it tomorrow. And now a year and a half later, I’ve been blogging for the most part, I walk around the house with no support. And it’s just taking time and it’s a struggle, but it’s it is a challenge. But it’s worth it.
Bill Gasiamis 28:24
What kind of work were you doing before?
Jamie Robinson 28:28
Before the stroke, I was in grocery pricing. I was a pricing manager for grocery and so I’m the one you blame for probably stopping being too expensive.
Bill Gasiamis 28:45
Okay, I know where to send the rage. Okay, so you’re it’s an administrative type of job sitting down at the computer, looking at spreadsheets or that type of thing. Where are you at with work? Are you in any situation where you’re able to go back to work or do work like that?
Jamie Robinson 29:07
Well, I had I had just come up and come away from cancer. And so I was still on. I still had some time left for Medical Necessities for that. So whenever I had a doctor’s appointment or something going on, they were charged against the FMLA time the light left. So when I had the stroke I had a good strong support team in the office with me I was worried about that. And then the stroke in the hospitalization ate up all the FMLA time and then I was terminated.
Bill Gasiamis 30:00
What is FMLA? stands for?
Jamie Robinson 30:02
Family Medical Leave Act.
Bill Gasiamis 30:06
And you had a cancer scare. So what was that all about? When did that start?
Jamie Robinson 30:14
What was it in September?
Jessica Robinson 30:16
It was in like, May of 2022.
Jamie Robinson 30:21
They found a cancerous node on my lung and then wound up doing chemotherapy, and they cured it.
Bill Gasiamis 30:31
Okay. Were you a smoker?
Jamie Robinson 30:36
30 years.
Bill Gasiamis 30:38
Okay, so I guess you’re not a smoker now?
Jamie Robinson 30:42
No.
Bill Gasiamis 30:46
I can’t believe you had to point to her. She shouldn’t be the one who’s like smacking you on the head with a wooden spoon to make sure you stop smoking. What you’re telling me is that it was one of those things that you did, which is quite enjoyable, which you liked doing. Didn’t bother doing it right?
Bill Gasiamis 31:08
I know that feeling because I enjoyed smoking too when I was smoking. And of course, that one had to make me stop after the first brain hemorrhage I just stopped. But I know what you’re saying. I mean, it’s not that you’re being forced to stop. It’s that you’ve finally become aware of how bad it can be.
Jamie Robinson 31:30
Well, I know it’s bad. I know it helped cause it.
Bill Gasiamis 31:42
So tell me about your voice. It sounds like it’s a little bit labored. Is that a result of the tracks? Why does that sound like that? And is it very different from what it used to be?
Jamie Robinson 31:57
Yes, it’s different, but it’s not so much forced is just, that I’m getting used to it, the muscles are growing back and getting stronger. So I’m getting back in shape as far as that goes. For a while when I woke up, I couldn’t speak at all, at the trachoma through sign language and communicated with writing stuff on paper. And I couldn’t even drink soda. I could, I had a hard time swallowing. So if I had a cheeseburger or something, I had a chance to choke. So all that’s been gradually getting better. And now I’m having a soda. I opened Oh cans and drank away now. I graduated from speech therapy. Did all these speech practices for me, and I just kept working on it. It’s my voice getting better. It’s much better than it was back in the day, but it’s nowhere near what it was before the stroke.
Jessica Robinson 33:20
He had he couldn’t swallow for well, from ICU up until like, probably the middle of rehab. So two and a half months, he was on a feeding tube and couldn’t swallow. Then they did testing and everything and they put him on by the time he left the hospital. He was on a solid food diet, a normal food diet. Yeah, normal food diet, but he had to have all of his drinks thickened. And he had to have all the strings sticking up until September 2023. And that’s when he was able to start drinking normal liquids.
Bill Gasiamis 34:09
Okay, so it’s been a gradual improvement, slow, but gradual, and then eventually you’ve achieved some decent outcomes. Do we know why the blood clots occurred? Like what is the underlying cause? Is he susceptible to them? Why is it? Do we know?
Jessica Robinson 34:31
They don’t know he didn’t have a, he had a spleen removed when he was like seven. And they told me in the hospital, they went back and forth for a long time trying to find a cause. They finally thought that because he had his spleen removed because his blood cells are kind of an odd shape and the spleen would eat them. Mopping it will make it enlarge.
Jessica Robinson 35:02
And they finally decided that maybe the disease he has makes them that odd shape. Might also be very rare though they don’t know a lot about it, it would also possibly make them sticky and sometimes cause flooding. That coupled with the chemo, because he had just finished chemo in August. And after he finished chemo, he had so much swelling.
Jessica Robinson 35:32
He had a doctor’s appointment. Gosh, like, he had a stroke on a Sunday, and he had the doctor’s appointment on a Thursday for the swelling. And she had a CT scan done. And she sent him a message on his Follow My Health that I received while he was in the hospital, on his app that the CT scan looked good. And he was okay to just continue what he was doing. And I sent her a message back and I was like, well, he had a massive stroke. And he’s in the hospital ICU. So I don’t know, but it didn’t seem like it went that well.
Bill Gasiamis 36:21
Poor Doctor. I mean, she was beside herself thinking what? What am I? Yeah, but as far as she was concerned, everything else went to plan. Yeah.
Jessica Robinson 36:36
And at least he did have that moment where we know that there wasn’t something we should have done differently. You know, like, Oh, if you’re just seeing a doctor before this happened, at least we know that we did. You know, well, yeah.
Bill Gasiamis 36:54
Somebody’s getting tired.
Jessica Robinson 36:57
My legs are starting to hurt a little bit.
Bill Gasiamis 37:00
So we’ve got everything’s sort of going well, making a lot of progress. Worked out a lot of things and resolved a lot of issues. Your 49 When it happens, when was your 50th?
Jamie Robinson 37:17
I got released from the hospital. And was it February? And my birthday was in June.
Bill Gasiamis 37:25
June the what? June 19. On June the eighth. Oh. And I’ll be 50 this year. Oh, how good was it to get to 50 why it was
Jamie Robinson 37:42
it was very enjoyable. I had a lot of friends over. And we had a big party. And I was stuck in a wheelchair at that time. But it was a very fun event.
Bill Gasiamis 37:57
Yeah. So what’s it like now, for you, Jessica, have you been able to get back to work is everything kind of settled down with that side of it?
Jessica Robinson 38:06
Yes, I’m back to work. He still needs 24/7. More of a supervisor than a care but 24/7 supervision because he is still stroking. He’s still a choking risk. Sometimes he’s still choked. So someone has to watch him when he’s eating. And then he’s also still a bit of a fall risk. So someone has to be 24/7. So my parents come during the workday when I’m working and stay with him.
Setting brainstem stroke recovery deadlinesBill Gasiamis 38:44
He’s high maintenance. Jamie, what’s the deal? Might, how long is it going to be before? Do you feel like I know you’re improving and you’ve hit all these milestones? How long do you feel before? And this is not a goal that you have to sit in and hit I’m just sort of seeing where you’re at with it. How long do you feel before you can be fully independent and you don’t need the babysitting, so to speak?
Jamie Robinson 39:11
Well, everything is going according to plan so far, but I don’t know. It’s just I still can’t walk very well. I still have problems with my left arm. I still have stuff I’m working on. But I was told that while I was in the hospital, I was told that for every day that you’re in the hospital imagine three days of recovery. So according to that, everything went fine. By about the time I had three days of recovery, for every day I was in the hospital was up. About nine months, 10 months, I was doing much better. I still think I’ve got probably a year to go before I can get back to work and start being, “normal” again.
Bill Gasiamis 40:31
Yeah, whatever that means. Okay, it was a trick question. I mean, I knew there wasn’t going to be a solid answer. But there’s a reason for that. Because there’s a lot of people listening, who will have kind of deadlines set on I need to get back by this day, or this is the day or whatever. And usually what happens is recovery doesn’t go like that. And it takes a bit longer. Sometimes it could take less, but it might take a bit longer than what we want it to.
Bill Gasiamis 41:00
And people get disheartened. They feel a little bit kind of, you know, like, oh, man, I’m gonna be here all the time. And you know, they might start thinking like that. You seem to be taking it all in your stride. Have you always been chill like that? It seems like you’re very relaxed and chilled about it. Jessica’s shaking her head, and you’re nodding your head. So somewhere in between is the truth. How have you responded to adversity in the past?
Jamie Robinson 41:33
Usually, I’m like a crisis manager, I see the crisis. And I tag it head-on, whether it be strategically or forcefully, or just whatever is going to get me through it. Nowadays, like I said, it’s day by day, if I can’t do it today, just wait tomorrow and try again. The three days per recovery, three days recovery for every day, is more of a benchmark than anything.
Jamie Robinson 42:15
Just look at it, I want to be better by this time. And then you look at your progress up to that point. And you can push yourself to do better. And then you know where you’re at, and how much gotta work to get further. Me. I know I’m not ready to be on my own. I know I need people to help me. I know I need people to watch me that’s okay. , I go to the gym three times a week. I walk on the track in the gym three times a week. And when I say a walk in the gym, I’m carrying my cane not use not holding on to, to the guide rails just had their writing experiences, just the case. And I pushed myself to go for a mile. And I think it’s working out well.
Bill Gasiamis 43:16
Yeah. Sorry to interrupt you.
Jamie Robinson 43:22
That’s okay.
Bill Gasiamis 43:24
Yeah, you’re going well. So you’ve just sort of focused on the improvements that are happening, rather than how much improvement you want to see by a certain day.
Jamie Robinson 43:37
Right? Am I doing better than I did yesterday? Yes. Okay. I’m on the right track. Am I doing better than I did yesterday? No, I need to work harder. That’s all about day by day. What can I do the day? How much can I push it for tomorrow? How Where do I see that little bit of improvement? And that little bit of improvement every day will add up. I started doing a row machine that uses just your arms. Started at 90 pounds. That’s pretty good. I’m now up to 125. And it’s every day every time I go and try it. I add five pounds. And there’s too much that’s okay, our with what I’m used to. And I’ll just keep working it keep working. Just keep trying to do better.
Bill Gasiamis 44:40
So you’re getting stronger. You’re getting more resilient, you’re able to get through more effort. Are you noticing fatigue, does that sit in does that cause a little bit of a backstep
Jamie Robinson 45:00
I don’t see it as a challenge. That doesn’t affect me as much. One thing that I’ve heard from a lot of people, doctors, patients, everybody is that they have a lot of pain or are very tired. I got lucky. I don’t, I don’t notice it. I’m not in pain. I’m not tired unless I push myself. But I’m just very lucky where I’m at right now.
A piece of health advice for faster brainstem stroke recoveryBill Gasiamis 45:37
You’re looking for ways to improve all the time and you’re making big progress and you’re overcoming things. In our conversation, I noticed something that you’re doing that’s interfering with your recovery you want to know?
Jamie Robinson 45:59
Please share.
Bill Gasiamis 46:01
Drinking sodas.
Jamie Robinson 46:03
Okay. In my defense, it’s sugar-free.
Bill Gasiamis 46:10
Even then.
Jamie Robinson 46:16
I started when I was young drinking Mallow Yellow, I then moved on to Mountain Dew, Mountain Dew has like 75 grams of sugar with, whatever. And it was ridiculous. I changed from that to Pepsi. As that cut down quite a bit more since I’ve been able to drink soda again, I dropped down to zero sugar and started to lose weight, but it’s not helping a whole lot because it tastes good.
Bill Gasiamis 46:55
Yeah. I know it’s always about the taste. That’s the only thing that I could say to you, you know, that Sunday, that’s not going to cost you extra, it’s going to make a massive difference to your blood. Instead of drinking a soda if you drink water, or bubbly water, like mineral water or soda water, you know, the flavors are different squeeze some lemon in there, squeeze some orange in there, anything just to get you that feeling that sensation of you’re doing something similar that that will help.
Bill Gasiamis 47:29
It’s just there are too many chemicals in those diet ones, and they don’t have a positive impact. They may have a negative impact, but they certainly don’t have a positive impact. Drinking water is going to have a positive impact and help thin your blood naturally. And just take out some extra stuff that your blood doesn’t need to have. So anyway, that’s my 10 cents worth that’s your nutritional advice for the day.
Jamie Robinson 47:56
That’s quite alright, Jess has been trying to get me to drink more water for years.
Bill Gasiamis 48:05
Yeah, well, we, you know, if it helps, you know, what you do, is you get a water filter, you filter out all the stuff that you don’t like in the flavor of water from the tap. And then you just add, like I said, a little bit of lemon or orange or lime or anything in there just to help you make a tasteless water, boring, I don’t know, whatever it is, it’s the most important thing.
Bill Gasiamis 48:31
Because you can extract you know, with blood cells that are differently shaped they need water, they need to be hydrated in different ways. You know, they don’t need to be hydrated by beer or sodas or anything like that. They need they need water especially since you know you’re still not active, very active, and that you need to help your blood circulate as much as possible so that you don’t develop DVTs or any of that stuff from sitting down.
Bill Gasiamis 49:14
Because I know that there’s a risk of sitting down a little bit too much, especially then when we’ve been unwell after a stroke, you know, so just consider it and maybe you know, cut down from whatever you’re drinking now to half of that and then see if you can make your water tastes a little better and then go from there. And you’ve also been through cancer.
Bill Gasiamis 49:37
You know, you want to give your body the best opportunity to repair itself and heal itself. And Jessica he’s very high maintenance, like we said, but he also needs a lot of attention by the sound of it. He’s doing all this getting attention. Oh my God. Is there any opportunity for anyone else in that house to get a little bit of life? How have the girls been I hate teenagers can be completely annoying at the teenage stage.
Bill Gasiamis 50:13
I had teenagers when I was unwell. And they were just painted as they were meant to be. And it didn’t make it easier. But I was also able to just chill out and say, look, they’re just being normal, and they won’t understand and I shouldn’t expect them to understand. But I used to get a little bit upset when they were a bit too loud.
The benefits of having a supportive family during a difficult timeBill Gasiamis 50:35
And I had to tell them multiple times, or when they wouldn’t help out around the house, and I needed help because my wife went back to work. So if they were around and causing a mess, or creating you know, a nightmare in the kitchen, you know, I needed them to be on top of sorting out their stuff. And Sometimes they wouldn’t how the girls respond during this time.
Jessica Robinson 51:00
They’ve responded pretty well, I’m there’s that there’s, you know, messes and, and things like that. But for the most part, they’ve been very helpful.
Jamie Robinson 51:13
They have I’ve got two 15-year-old twins, who are very helpful. They still complain when we ask them to do something. But they get it done, they’re trying to be as helpful as possible for me. And my 18-year-old daughter is still living home washers in high school. And she’s studying EMT right now. And she’s wanting to be a physical therapist. So she’s gotten a lot out of this negative experience.
Jessica Robinson 51:55
Yes.
Bill Gasiamis 51:56
Did she want to be a physical therapist beforehand? Or did it sort of start to give her some idea of what a good career might look like?
Jessica Robinson 52:08
No, she, I don’t think she had any idea. I mean, she was kind of considering the medical field of some sort. But I don’t think she had any idea about therapy really, at all. Until she saw firsthand. I mean, he had, gosh, like five months in home therapy when he got home. And when he got home, he was in a wheelchair and could only transfer with the sitting board. And we had all those therapists and all the time, and she got to see all that firsthand. And I think that made a huge, huge difference.
Bill Gasiamis 52:43
Your life is on hold, Jessica. How’s that been? Now? Is it Have you been able to sort of transition back to a routine? Do you feel comfortable? Being? Not around as much? What’s that, like, on your mindset?
Jessica Robinson 52:59
That’s a good question. Ah, yeah, I think getting, you know, back to work normally, and all that was, is helpful. And we’ve been able to get on a fairly good routine. I mean, it helps that nal personality is easygoing, and things like that. And we don’t have you know, a lot of issues. I know, sometimes that stroke, kids have a rough part of the brain. And sometimes people get kind of short-tempered and things and that that didn’t happen. So yeah, I think we’ve gotten back to a pretty normal routine.
Bill Gasiamis 53:43
Yeah. And what does that look like for you to work in the morning? How does that go?
Jessica Robinson 53:48
I go to work at nine. My parents used to get here about four 845 in the morning, I only work a block and a half away. So I go to work. And then I come home for lunch at noon, and I have an hour’s lunch, and then I go back to work and I come home at 4. Yeah, it’s perfect.
Bill Gasiamis 54:12
And do Mum and Dad live close by?
Jessica Robinson 54:15
They live about half an hour away. Okay.
Bill Gasiamis 54:19
And are they retired?
Jessica Robinson 54:21
They are.
Bill Gasiamis 54:23
How good are the inlaws? You probably never expected them to come and be your babysitter.
Jamie Robinson 54:32
They’re very good. They’re very attentive, they take care of me, they get me to the gym, and they take care of me when I can’t take care of myself. When I got home. I was in cognitive and had other problems and they were there still to help me get dressed, help me change clothes, just everything they’ve been very good people.
Bill Gasiamis 55:08
That’s one son-in-law who can’t say negative or bad words about your inlaws you are not allowed my friend, you cannot say anything. It’s so good that you guys have that ability to have your family close by and being surrounded by them was one of the benefits. That’s what we had. My brother lives 10 minutes, in one direction my parents live 10 minutes in the other direction.
Bill Gasiamis 55:38
My sisters-in-law, everyone’s kind of within 10 minutes of each other. So every time we needed something all we had to do was reach out or people would die all the time and help out. And it’s just such a benefit. Every once in a while you hear people and you know, being nearly 50 people asked me like, Where else have you lived and I’m like, I haven’t lived anywhere else.
Bill Gasiamis 56:04
I moved three kilometers away from my original home to my current home. I’ve done it my whole time. And the same with my family, no one’s moved anywhere. Everyone sort of stayed nearby to where they grew up. And their families. And it’s just been a bit of it’s been a blessing because we don’t have those villages anymore. I barely know my neighbors I’ve been I’ve been here for 20 years, they switch in and out.
Bill Gasiamis 56:32
So you don’t often get to meet everybody and create a relationship with them. So even though I could be I do feel like I could go to a neighbor and say, Hey, can you help out with something for a minute, I know that I would probably get that help. But I didn’t need to because everyone else was around me. And then a lot of stroke survivors don’t have that benefit.
Bill Gasiamis 56:53
But it says something about, you know, finding a place and putting your roots down and then just sort of staying there. I think getting to know the community in my local cafe, for example, when I go there, I know everybody, and they know me. And they would even be the type of people who would help. I remember during lockdown in Melbourne, Australia, we had the worst lockdown in the world.
Bill Gasiamis 57:15
During COVID, we weren’t allowed to leave the house if we thought that we had a cold, the COVID or whatever. And, to do the right thing and make sure that they were able to keep their Cafe open and keep it running. Keep serving the community. If we thought we had COVID, all we had to do was send them an SMS and say Hey, can you bring us four coffees, some croissants, etcetera.
Bill Gasiamis 57:43
And that would walk the 700 meters down the road and bring it to us. So you know, there are a few people like that. But with our family, we were able to rely on, we’re able to rely on them for everything. And I got driven around and I got all those favors done. And it’s just it takes one of those layers of the difficulty of strike like it sort of just takes it away. Gets rid of it. Were you both insured? Did you guys have health insurance at the time when you went through the cancer and the stroke?
Jamie Robinson 58:26
Yeah, I had insurance through my work. And it was a really good insurance. So they covered the cancer very well. But when I when I had a stroke, they wind up coming in very handy. And we’re thankful very much we had it. And we got.
Jessica Robinson 58:54
We had a critical care, policy so that helped out a lot where he had a critical care policy on his insurance.
Bill Gasiamis 59:02
I hear a lot about insurance where it’s supplied through the employer. And often when people become made unemployed, their insurance lapses. Is it too expensive to buy insurance? Just on your own and have your insurance policy? Do people do that?
Jamie Robinson 59:26
Yeah, you can. You can even find a cheap and expensive policy that’s just saying 10 bucks a month. But the ones offered through work. You don’t have to shop around and it’s taken out of your paycheck so it’s easier.
Jessica Robinson 59:46
And a lot of the cheaper policies aren’t going to cover that you’re gonna if you have an if you have an emergency like this, you’re going to be in trouble because they’re not going to cover it very well. Um, now when he Even his employment was terminated. Then we had to do what’s called Cobra. So you have your insurance, but it’s, um, you have to pay, you’re paying it yourself.
Jessica Robinson 1:00:16
So you’re paying your employer’s part of it as well. And it’s extremely expensive. But we did keep that for about six months, even though it was about $1,000 a month. But we kept that for about six months because it was its pay it pretty much covered everything.
Jessica Robinson 1:00:37
And he, we were would have been able to get onto a state insurance policy, which is what we ended up doing. But the state wouldn’t have covered the home health care that he had. So we kept it until he went to outpatient therapy, and then we were able to switch to that and not have to pay anything.
Bill Gasiamis 1:00:59
Do those work policies cover the family as well for other medical conditions? Or is it just a person who is employed?
Jessica Robinson 1:01:08
In our case, you can get it so that they cover the whole family. In our case, we did not do that we had a a different policy through the government, for the family, because it would have cost quite a bit more. So, his policy by himself was just 200 hours a month while he was employed there. So
Bill Gasiamis 1:01:32
okay. So you had the benefit of coming out of the hospital and not a massive bill that some of the American Stroke Survivors talk about that ridiculous they do to people after they’re unwell and not able to work and go home with a six. It’s ridiculous. So what’s it like now, being able to I imagine, Jamie’s still not receiving any income, it’s been a bit of a juggle is it changed the way that you guys have to go about living your life, expenses, everything’s going up, how’s that?
Jessica Robinson 1:02:16
He’s on disability now. So he does get some income through that, but it is quite a bit less than what he got when he was working. So yes, we have had to, like, cut down on some expenses and just change the way we spend.
Bill Gasiamis 1:02:38
Yeah, we were the same. I mean, my wife was working three times a week when I wasn’t able to work. And I haven’t been able to work properly for 10 years. Because of all of the stuff that I had to go through, and then to get back to work, and then COVID, lockdowns, and all that type of thing. So it’s a massive adjustment.
Bill Gasiamis 1:03:00
We’re not going without anything, but still being super cautious of over-committing to something that we don’t 100% need or you know, we can do without it’s interesting stroke takes a lot of time for things to settle down, and get into return. And then for some people that return often then doesn’t involve doesn’t involve employment.
What’s next for Jessica & Jamie RobinsonBill Gasiamis 1:03:29
So it’s a very different experience to what we used to previously. So what’s next for you guys? where to from here? Jamie, what are you thinking? I know you gave yourself about a year or so. But what else is on your mind? What else would you like to accomplish and achieve?
Jamie Robinson 1:03:54
Physically as far as physical therapy, I had certain goals that I was trying to meet. And I want a meeting. One of my goals was to climb stairs by going into a friend’s basement. And I made that goal possible. And I’ve been able to do it. So because of that. I go and hang out with a friend every week.
Jamie Robinson 1:04:23
So my son comes over picks me up, and they will draw to a friend’s house just hanging out for a couple hours. And that is it’s feeling like I’m getting back to normal. As far as about a year from now. I’m dying to get back to work. I just want to get out of the house away from Netflix. Just do something. I want to go back to stockings back to a mind-numbing and no-thinking job. So that’s what I want to do.
Bill Gasiamis 1:05:00
That’s a good one. For about three years I went back to a mind-numbing, no-thinking job as well. Everyone had it all sorted for me to do this. Once you’ve done that, let me know. And do this. Oh, man, that was so good for a little while. Until then eventually, I realized I had recovered enough. And I was beyond that because then it was mind-numbing was annoying to me.
Bill Gasiamis 1:05:24
And I was complaining because it was mind-numbing, oh, this is boring. But it took about three years to get there. And having somewhere to go and interacting with people was good, especially regularly in the office, that type of thing. That was good. What about you, Jessica?
Jessica Robinson 1:05:50
To see him keep getting better, I think I’d like to see him be able to drive at some point. I don’t know if that’s in the cards, but it’d be something that I think would just be important for him. But, I mean, to be honest, I never imagined we would be here. It was too hard for me to see beyond where we were at the time to see that this was possible. So I’m just ecstatic about where we’re at.
The three questionsBill Gasiamis 1:06:26
Normally, I don’t ask caregivers, because they’re very rarely on my podcast, I don’t ask them this question. But I’m gonna ask you both the same question, see if you can give me your version of the answer. So, Jessica, what’s the hardest thing about stroke for you as a caregiver?
Jessica Robinson 1:06:43
I think the hardest thing for so long was that I felt alone. Just he was he wasn’t the same, he wasn’t able to, you know, make decisions. I’m we were always a team, and we always made all of our decisions together. And having to make all the decisions without him being able, to help was very difficult. That has gotten a lot better. And you know, still not, you know, 100%. But it’s, it’s a lot. It’s a lot closer to what it was.
Bill Gasiamis 1:07:29
Jamie, what’s the hardest thing about the stroke?
Jamie Robinson 1:07:33
Well, I think it’s the fact that everything changes. One minute, I’m perfectly fine. And everything’s going good. I’m walking like normal talking like normal, playing video games. And then the next day, I can’t do any of it. So it’s just that gradual getting back to how it was before the stroke. That’s the hardest. Just have to deal with the “disability” that I have. I’m not disabled, but I can’t move my arm, I can’t move my leg, I think right. Just getting back to how I was, it sucks.
Bill Gasiamis 1:08:29
Jessica, what is something that you’ve learned too, because of this stroke journey?
Jessica Robinson 1:08:41
I think one of the things that I learned is gentleness. I mean, I’d like to think that I’ve always been a very kind person, but I haven’t always been the most gentle person. And I think that’s really what I’ve learned the most is how important it is and how not important some of the things that I used to think were important were.
Bill Gasiamis 1:09:10
Old habits die faster, don’t they? I mean, I had all of those awarenesses about stuff and it’s like, Alright, you’re being ridiculous. Again, you’re complaining about something you should be complaining about. You find yourself there, you’re human, right?
Bill Gasiamis 1:09:28
And you’re still a married couple and you still have the same dramas and even though you promise I swear once everything gets back to normal we’ll never argue. You always go back there sometimes, but it’s alright. I’ve learned that you can go there and then just become aware of it quickly and then go okay, out of there. Get out of there. What about you, Jamie, what’s something that you’ve learned because of the stroke?
Jamie Robinson 1:09:56
Probably taking it day by day Instead of planning for the future, just get through the day you’re in, whatever challenges come up, take them on one day at a time, whenever you can do plan the next step, just one step at a time. And don’t be a pessimist just keep going. I can’t do it right now. That’s okay. Maybe tomorrow I can, and then just keep going. Just keep working harder. So day by day.
Bill Gasiamis 1:10:43
Jessica, what’s something that you would like to tell perhaps another caregiver who might be listening to this, like a little bit of wisdom or some advice or something that might help them in their journey, especially if they’re just starting theirs?
Jessica Robinson 1:11:02
Ask for help. You feel like you’re going to be a burden on somebody, but people do want to help. They just don’t know what to do. So if you know, dinner will help just ask someone to bring you dinner. If you can think about food, then that’s something you know, just ask for what you need. Because people want to give it to you. They just don’t know what to do. So they just sometimes don’t do anything.
Bill Gasiamis 1:11:34
I think that’s great advice. And it’s not doing anything that looks like they’re being not nice, or they’re being insensitive. But it’s not there, since they don’t know how to do it. And then I suppose the only other piece of advice I could offer with regards to asking for help, and specifically dinner, is, to make sure you ask somebody for dinner who can cook properly.
Bill Gasiamis 1:12:01
Be a bit picky with who you’re gonna ask for dinner. What about you, Jamie, what do you want to tell other stroke survivors who have maybe just got out of the hospital got home, and, you know, sort of getting used to things the way that they now are, instead of the way that they were what’s a little bit of advice?
Jamie Robinson 1:12:24
Probably the same thing, ask for help. You just got out of the hospital, you had a life-changing event, you cannot do what you used to do. And that’s okay. You’re going to need help walking, you’re going to need help getting up, you’re gonna need help reaching for this.
Jamie Robinson 1:12:47
Day by day, it’ll get easier, day by day, you’ll get better. But right now, you need help. That’s what Jess is, therefore, she’s here to help. So your wife, your husband, your caregiver, whoever it is, tell them what you need. Be honest with them. Don’t rely on yourself as much. You’re not going to be able to do it yet. And it’s always a yet you won’t be able to take care of yourself, but not right now. Ask for help.
Bill Gasiamis 1:13:29
It sounds like you’ve written part of the first chapter of my book because that whole attitude of I can’t do this yet is in my book exactly what you said. And adding that word into a sentence makes a massive difference. So what it does is tell the brain that I’m not doing it now, but I might be able to do it in the future. And that kind of takes some of the anxiety and the stress off of the fact that you’ve lost that function for now.
Bill Gasiamis 1:13:59
So that’s really good advice. Hey, guys, I appreciate you reaching out and asking to be on the show. Thank you so much for doing that. It’s lovely to meet you. I appreciate you sharing your combined journey because stroke’s never alone. Stroke survivors never do it on their own. There are always other people around who are also going through their stroke journey with their loved ones. And I wish you well. And I hope that in 12 months, there’s been improvement again.
Jamie Robinson 1:14:32
Yeah, thank you we appreciate you Bill, and your show.
Jessica Robinson 1:14:35
Thank you.
Bill Gasiamis 1:14:37
Well, thanks for being here with us and joining us in today’s episode. I do hope that you got a few gems from the conversation. If you’re interested in learning more about stroke recovery, make sure to check out my book available at recoveryafterstroke.com/book for additional insights into our guest’s stories and access to resources, like their social media links and interview transcripts visit recoveryafterstroke.com/episodes.
Bill Gasiamis 1:15:02
A big thank you to everyone who has already left a review. Your feedback is incredibly important in helping others on their recovery journey. If you haven’t yet, consider leaving a review on iTunes or Spotify. And if you’re watching on YouTube, drop a comment, like the episode, and subscribe for more content.
Bill Gasiamis 1:15:26
To all stroke survivors out there if you want to share your story and inspire others we’d love to have you on the show. No need to prepare anything just come as you are. And if you have a product or a service that supports stroke survivors, let’s explore that opportunity for a sponsored episode of the show reached out to me via recoveryafterstroke.com/contact for more details. Once again thank you for your support. Looking forward to connecting with you on our next episode.
Intro 1:15:54
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. The opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.
Intro 1:16:11
All content on this website and any linked blog, podcast, or video material controlled by this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis the content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.
Intro 1:16:33
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Intro 1:16:48
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Intro 1:17:02
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Intro 1:17:18
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Multiple Strokes: Understanding Causes, Risk Factors, and PreventionIntroductionMultiple strokes, also referred to as recurrent strokes, represent a critical health concern demanding thorough comprehension and proactive preventive measures. In this guide, we delve into the intricate facets of multiple strokes, elucidating their causes, risk factors, and effective prevention strategies.
Understanding Multiple StrokesMultiple strokes, characterized by the occurrence of successive cerebrovascular events, present distinctive challenges compared to isolated stroke occurrences. A comprehensive understanding of the underlying factors contributing to multiple strokes is imperative for devising targeted prevention strategies.
Causes of Multiple Strokes1. Underlying Medical ConditionsMultiple strokes often stem from untreated or poorly managed underlying medical conditions, including:
- Hypertension: Uncontrolled high blood pressure significantly increases the risk of multiple strokes by predisposing individuals to vascular damage and clot formation.
- Atrial Fibrillation (AFib): Irregular heart rhythm associated with AFib enhances the likelihood of blood clot formation, leading to recurrent strokes.
- Diabetes Mellitus: Poorly controlled diabetes contributes to endothelial dysfunction and atherosclerosis, exacerbating the risk of multiple strokes.
2. Lifestyle FactorsCertain lifestyle choices elevate the susceptibility to multiple strokes:
- Tobacco Use: Smoking exacerbates vascular damage, promotes a prothrombotic state, and amplifies the risk of recurrent strokes.
- Physical Inactivity: Sedentary lifestyles are associated with poor cardiovascular health and increased incidence of multiple strokes.
- Unhealthy Diet: High consumption of saturated fats, sodium, and processed foods contributes to atherosclerosis and elevates the risk of recurrent strokes.
3. Medication Non-AdherenceFailure to adhere to prescribed medications, such as anticoagulants, antiplatelet agents, and blood pressure medications, increases the likelihood of multiple strokes. Consistent medication adherence is pivotal in preventing recurrent cerebrovascular events.
Risk Factors for Multiple StrokesIdentifying and addressing key risk factors is instrumental in mitigating the recurrence of strokes:
- Advanced Age: Aging is associated with an increased risk of multiple strokes due to cumulative vascular damage and comorbidities.
- History of Stroke: Individuals with a prior history of stroke are predisposed to subsequent cerebrovascular events.
- Gender: Men tend to exhibit a higher incidence of multiple strokes compared to women.
Prevention Strategies for Multiple Strokes1. Medication AdherenceStrict adherence to prescribed medications, including anticoagulants, antiplatelet agents, and antihypertensive drugs, is paramount in preventing multiple strokes.
2. Lifestyle ModificationsImplementing healthy lifestyle changes significantly reduces the risk of multiple strokes:
- Smoking Cessation: Quitting smoking mitigates vascular damage and reduces the risk of recurrent strokes.
- Healthy Diet: Emphasize a diet rich in fruits, vegetables, whole grains, and lean proteins while limiting saturated fats and sodium intake.
- Regular Exercise: Engage in regular physical activity to enhance cardiovascular health and lower the risk of multiple strokes.
3. Management of Underlying ConditionsEffective management of underlying medical conditions, such as hypertension, diabetes, and atrial fibrillation, is essential in preventing multiple strokes. This may entail medication optimization, lifestyle modifications, and regular medical monitoring.
4. Education and AwarenessRaising awareness about the signs and symptoms of stroke, as well as the importance of early intervention and adherence to preventive measures, empowers individuals to take proactive steps in preventing multiple strokes.
ConclusionIn conclusion, multiple strokes pose a significant health threat, necessitating a comprehensive approach to prevention and management. By addressing underlying risk
Full Interview with Bear HerbertBear Herbert is a stroke survivor with speech challenges and surreal out-of-body experiences, offering unique insights into his journey.
Highlights:
00:00 Introduction
06:36 Nonverbal communication and stroke recovery
12:59 Neurological disorder and its effects on life
17:43 Cryopyrin-associated autoinflammatory syndrome (CAPS)
20:06 Managing symptoms through dissociation and spiritual practices
27:57 Synesthesia and mystical experiences
32:22 What is synesthesia
44:36 Say yes to the mysteries of life
52:54 Spirituality, mysticism, and visions
59:35 Trauma, abuse, and mental health
1:08:56 Why the need to connect?
1:10:24 Emotional recovery and warrior heart concept introduced
1:14:08 Spirituality, consciousness, and personal growth
1:21:33 The three questions
Transcript:
Introduction – Bear Herbert
Bill Gasiamis 0:00
Hello, everybody, this is episode 300. And my guest today is Bear Herbert, who experienced multiple strokes has suffered from spontaneous bouts of being unable to speak, and has experienced out-of-body experiences where he can observe himself from a different perspective. Bear Herbert, welcome to the podcast.
Bear Herbert 0:23
Thank you for having me. It’s a pleasure and honor.
Bill Gasiamis 0:30
My pleasure. Tell me a little bit about what happened to you Bear.
Bear Herbert 0:37
It is quite convoluted. However, I had been going non-verbal since quite young, and probably seven was the first time and gone through those things my entire life. My parents would take me to the medical facilities, and they would do testing and say that I was emotionally and mentally fatigued.
Bear Herbert 1:05
And as a seven-year-old, I’m just thinking, I can’t talk what’s going on here. Fast forward to 2015. Me and my family were back in Central Oregon. And I had a massive stroke and went to bend Regency. I was diagnosed with antiphospholipid antibody syndrome, at that time, a clotting disorder, also known as Hughes disorder, a sticky blood disorder. And then fast forward to 2002.
Bear Herbert 1:45
I went catastrophic, which means producing blood clots, and three or more organs in my body at once. And to that point, for seven years, I had just been spitting up blood clots like Doc Holliday, almost. That’s when I got diagnosed with caps, which is a rare neurological disorder in the demographics are so small, that there is almost none available. And it helped me understand I’ve been having strokes, my entire life of sub different sizes.
Bear Herbert 2:22
And when I went catastrophic, they, I’m able to see things in my way. I’m very much ethereal like we all are, but I understand who I am and where I’m from. And the doctors, I saw their hearts in the way that I can see. And they all viewed me as their kid brother. And so I thought, well, even if they don’t know what they’re doing, they’re not going to try to kill their kid brother.
Bear Herbert 2:49
So I said yes to what they wanted to do. And they saved my life. And when I was in there, I had hundreds of heart attacks. I have a bicuspid valve in my heart, so my heart doesn’t close all the way. Also, the doctors came in, and I told them, I was having a stroke right now. And they told me no, you’re not your face isn’t draping, none of that stuff. And I said trust me, please.
Bear Herbert 3:22
And they left and came back 20 minutes later and put me in the MRI machine. I was in there for an obnoxious amount of time. I can’t remember how long he said but it was like six hours or something. And I kept having why they kept me in there so long as I kept having just hundreds and hundreds of 1000s of small strokes everywhere. They weren’t able to pinpoint them or account for them so they told me that I’ve had an innumerable amount of strokes at this point.
Bear Herbert 3:54
And that’s kind of how things got more formulated to what’s happening. And I’ve been working with the ability tree. They are an independent company here and Bend Oregon helping disabled people stay independent. And the worst part of my journey was being in convalescent centers and not being with my family. Also being nonverbal in those centers and the bad things that happen from the staff to nonverbal people.
Bear Herbert 4:28
They think they’re just invalids, I guess. And so, right now I’m on a great adventure. I have a gift of foresight I’ve always had and we are going to be producing facilities in Cook County, Oregon. And they’re going to be 3d printed with hempcrete. I have one of the people that I’ve known in the past who does that.
Bear Herbert 4:58
And we’re going to print the Is buildings and there’s going to be a healing and recovery center for families to be able to go and recover if they want together as a unit. And then also there’s going to be a Vocational Center attached to that. That is going to teach basic skills of all the different things I’ve done through my different stroke recoveries, that have helped me.
Bill Gasiamis 5:26
We’ll be back with my guest in a minute. But first, let me tell you about my new book called The Unexpected Way That A Stroke Became The Best Thing That Happened. 10 tools for personal transformation. it tells the story of 10 stroke survivors and the steps they took, that got them to the stage in their recovery, where from a personal growth perspective, stroke transformed into one of those life experiences that on reflection was filled with many opportunities for growth and personal transformation.
Bill Gasiamis 5:56
In the book, there are chapters on nutrition, sleep, exercise, how to deal with the emotional side of stroke, tips and tools for mental well-being, and much, much more. To find out more go to recoveryafterstroke.com/book, to grab a copy from Amazon, in your part of the world, just go to amazon.com type my name Bill Gasiamis into the search bar, and you will get results for delivery to your place from wherever you are in the world.
Nonverbal communication and multiple stroke recovery
Bear Herbert 6:27
And in the healing center, there’s going to be a lot of frequency devices and harmonic harmonic healing. So it’s the kind of thing that used to be considered woo-woo, not so long ago. But now the science is catching up mainstream to understanding what’s happening and needing a Vel Walker. That’s why I consider myself leaving this human suit so many times, but coming back to it, I have access to the other realms.
Bear Herbert 6:57
And so I’ve seen these frequencies and different lights and things that I knew would heal me. And so in 2015, I tried to find some, and I found some, they were red light machines. But I ended up getting an itera care device from Price International. And I use that on myself. And yeah, so that’s kind of what it is.
Bill Gasiamis 7:27
All right. So your experience with being nonverbal. You were nonverbal until the age of seven?
Bear Herbert 7:37
No, I was verbal, I was talking at a very, very young age, and it kind of scared my parents. Because I was talking at a very young age, and I told them things and things I saw. And because I’m this way, as born in 83, as a dead baby to a lupus patient with the cord wrapped around my throat preemie. And so I’ve always had this way of being and it freaked my parents out when I was younger, saying things and telling them what I was, who I was talking to, and all those sorts of things, you know, I can imagine, really just disorienting from them.
Bear Herbert 8:16
But Wednesday the seventh, was the first time I went nonverbal because of some sort of physical injury. I was riding in the front of the four-wheeler with my cousin, and another cousin came over the hill, and we had on and my knees were in the middle. And I just couldn’t talk for about three weeks. And then I started talking again, and everybody’s talking about I’m just a drama queen.
Bill Gasiamis 8:48
Uh-huh. So then it became just something that happened, something that you did rather than something that happened to you, and then you were better for quite a long time? Did you have any situations where things went off track after that?
Bear Herbert 9:03
There were a lot of times that I had things happen that I went nonverbal sense them through childhood, but as always I was going into the hospitals and then doing tests and saying that I was just mentally and emotionally fatigued. And that’s crap. And then so when I was an adult, I made my living in the oilfield drilling gas holds for assholes and kind of the funny vernacular, but I was doing that and operating cranes and heavy equipment and stuff.
Bear Herbert 9:42
And my boss came in one day to the field and picked me up and looked at me and said, I don’t know what you’re doing. But then keep talking on the phone and you won’t answer me. And I answered him, and he’s like, you know, words are coming out of your mouth Bear. And it just shocked me, because I was talking to him on the phone, and he hung up on me. But I was 32 at that time, and I went to the emergency room.
Bear Herbert 10:16
And they did the same thing. They did a bunch of tests and stuff. And they said that I was just emotionally and mentally fatigued. And so, at that time, I kind of had to stop working for other people. And so I, this shirt I have on his shirts, decorative concrete, I ended up building for businesses and years. And just every time I go through a stroke, I get on a different savant. Something comes to me in the Val, and I have to know all I can understand about it, or else my spirit isn’t satisfied. And I’ve done all sorts of dogma studies and different things, and blah, blah, blah.
Bill Gasiamis 11:04
So just before we go there, before we go there, let’s go back to your employer. Did your employer go and get you checked out? To see why somebody said you were nonverbal? And you thought you were responding, and they couldn’t tell that you were responding? Did you go to the hospital? Yeah, go through that process?
Bear Herbert 11:30
Yeah, that’s where he took me to the emergency room. And it was Christmas Day.
Bill Gasiamis 11:37
Were you aware that you weren’t talking at that time? And did it come and go?
Bear Herbert 11:44
No, I thought words were coming out of my mouth. And then I looked at myself talking to myself in the mirror, and my mouth wasn’t even freaking moving.
Intro 11:45
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like, how long will it take to recover? Will I recover? What things should I avoid in case I make matters worse?
Intro 12:13
Doctors will explain things. But, if you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you.
Intro 12:35
It’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery, head to the website. Now, recoverafterstroke.com and download the guide. It’s free.
Neurological disorder and its effects on the life of Bear HerbertBear Herbert 12:59
So there’s a weird disconnect with my nervous system and everything is just as pulled away from myself. And it happened again when I was doing my decorative concrete stuff. I was doing proxies. I got USDA approval for indoor labs, horticultural centers, and clean rooms. So I got picked up by the cannabis industry and stuff. And I have researched plant-based medicines.
Bear Herbert 13:35
And it was a selfish kind of a deal, what I could do to help little kids like my little brother and I have to go through the things we went through with our parents if we went unknown, and so we ended up getting cannabis legal agents in the state of Utah for medical use. And then I was doing some floors at home and went nonverbal. And I call my little brother and just kind of web lead out a whimper and he says, Oh my God, give me a pen where you’re at, I’m gonna come help you.
Bear Herbert 14:09
So I did, he showed up. And he had a whiteboard with him. One of the markers. As crying little tears were coming out of my face. And he says we can do this buddy, remember Legends of the Fall? And He curled his face up and writes fuck, and starts laughing and I started crying. He’s like, don’t cry, man. Just write down what you need me to do. And we’ll do this. And so we got these floors done and stuff without me being able to even talk. And that happened quite a bit.
Bill Gasiamis 14:47
That happened quite a bit. So at what age was that?
Bear Herbert 14:53
That was starting when I was 32. I ran my businesses for three or four years and kept having more strokes and more strokes and just weird things happening.
Bill Gasiamis 15:07
Did anyone ever diagnose a stroke during those nonverbal episodes?
Bear Herbert 15:12
No, not at all. That’s the part that made me so apoplectic. I was just completely beside myself. And so when I got here to Oregon, again, I’ve lived half my life in Central, not central, but Northeastern Colorado, not sorry, Utah, on the reservation and half my life here in Central Oregon. And there are better facilities here and a lot better-trained staff, I believe. And that’s when I got diagnosed with antiphospholipid antibody syndrome. I was able to understand what was happening.
Bill Gasiamis 15:54
Was that a good diagnosis? From the perspective of Aha, here we go, we’ve got something to work with, or we’ve got some kind of an answer. And does that make you feel like perhaps it explained some of your childhood and some of the things that you experienced maybe from a medical perspective when you were younger?
Bear Herbert 16:16
It didn’t as far as flesh things out from my youth, that was still that part was still an enigma to me and every facet, however, and I got some basis to understand things and what was going on with my blood and blah, blah, blah. But in 2002, when I went catastrophic, that was the real Keystone for my understanding.
Bear Herbert 16:46
When Dr. Carr came in, and told me, This is what’s going on, I believe, he started asking me questions did I have a memory of extremely high temperatures, or fevers when I was a kid, have I ever gone, had a bad infection and different things, and my appendix was ruptured for seven days, my senior year of high school, and I didn’t get my antibiotics after I got out. And so my stomach opened again. So there were a lot of things that he could check, check, check. Oh, my God, this is what’s going on. And when I got that caps diagnosis, that is when clarity came to me, I’m like, Whoa,
Bill Gasiamis 17:31
What are the caps again?
Bear Herbert 17:35
I had a bunch of stuff pulled up so I could read it all to you. But I’m disheveled. And I haven’t been able to right now.
Cryopyrin-associated autoinflammatory syndrome (CAPS)
Bill Gasiamis 17:43
Let me see if I can find it, so is it an acronym C.A.P.S?
Bear Herbert 17:48
Yes. It’s a neurological disorder that expresses itself sporadically. And the doctor that I saw he’s seen two of us.
Bill Gasiamis 18:02
Let’s see if it has a description, CAPS neurological disorder, Cryopyrin-associated autoinflammatory syndrome.
Bear Herbert 18:22
There you go.
Bill Gasiamis 18:23
Whatever that means. Cryopyrin-associated autoinflammatory syndromes. And what does CAPS do to somebody? Do you know that?
Bear Herbert 18:41
For me, I have a super esoteric soul because of what I’ve been through and the bell so much. But what it does to me is there’s a phenomenon in the UF ology world, that’s called a pythium, the apothem effect. And that’s really what it does to me because I feel like my whole life I’ve lived in this mystic prelude of this grand mystery of creation. And I’ve been an intimate orchestrator of set events in my life.
Bear Herbert 19:23
I feel and understand that I’ve been there and done these things. So for me, I get a disconnected feeling from my body, and I’m here at my neurokinetic therapist’s office right now. I’m going to help him do some stuff in a minute. But that was a key for me and my healing was this neurokinetic therapy.
Bear Herbert 19:44
Because I was pissed when I first came because he put me squarely back in my human suit for the first time in my entire life. Because I spend most of my time in the ethereal realm just having fun without filling my body. be okay. And I knew I had to sell my body to heal. And I was like, Oh, no.
Bear Herbert managing symptoms through dissociation and spiritual practicesBill Gasiamis 20:06
Okay, so let’s break this down. So when I searched for caps the symptoms were nowhere there Bear doesn’t say you have out-of-body experiences, or you’re living in the ethereal realm, what it says is periodic episodes of skin rashes, fever, and joint pain. It says these episodes can be triggered by exposure to cold temperatures, fatigue, or other stressors, or they may arise spontaneously episodes can last from a few hours to several days.
Bear Herbert 20:45
So my whole body looks like I’ve been burned excessively, all over my skin. And that’s when a flare-out happens, and they get big giant welts on them. And it’s very painful.
Bill Gasiamis 21:04
And they just occur?
Bear Herbert 21:07
Yeah, and my eyes. Another thing is my eyes, whenever I’m at CAPS flare, my eyes get bloodshot and painful. And I guess I told you a little bit more than I needed to or should have about how I experienced stuff.
Bill Gasiamis 21:23
No, no, you didn’t I understand what’s cool. What’s cool is that now because I’m such an expert in diagnosing people and all these things, to me what it sounds like, to deal with such what seems like you know, very dramatic, physical experiences and feelings.
Bill Gasiamis 21:49
You’ve become good at disassociating yourself, from the physical experiences in a way to manage pain, and you, you go out of body, and you go to this other place where you can exist, and you can coexist with your physical self, and not experience what most people would probably have a very uncomfortable time experiencing. So, do you feel that maybe it’s a, perhaps an ability that you had, that you’ve been able to develop? And you’ve been able to get good at? Because you’ve had to deal with caps for such a long amount of time in your life?
Bear Herbert 22:37
Yes, and no, I didn’t develop it. I was born having this ability. Yeah. But what’s been hard on what I’ve had to work on, mentally, is the key that I got to put into my head, you got to be in this human suit. And that’s the bottom line. I realized, that when 2016 When I had those strings of strokes, I went completely white, my hair and my face, everything was white, like I was 115 years old.
Bear Herbert 23:11
And now my hair’s got color to it, and stuff again. But the reason why that happens is that when you’re in your Merkabah, your human Sue white body, there’s no light in your human suit to nourish it. And you can’t do that you’ll atrophy in one way or another. That’s what I was doing and happy to do so. But now I realize I’ve got a mission, and you better get your ducks in a proverbial roll young man, or you’re not gonna succeed.
Bill Gasiamis 23:53
Are you stepping into your body more often permanently? How do you experience, your day? How do you do that? Not how do you specifically do that? But how do you spend time in one place or another place? Or have they combined?
Bear Herbert 24:10
The craziest thing ever is, since I’m very very olfactory driven, and after those first sets of strokes, I was living in a neighborhood and I don’t know how people know things or whatever understand. But anyway, the human suits we have been hacked or DNA for profit. And every race has its proclivity to certain neurotoxins, as far as laundry soaps and detergents.
Bear Herbert 24:45
And at that time of that stroke event, when I got out of the nursing homes and stuff, I’d go walking down out of my house and I would start having seizures because everybody’s long Read detergent stuff. And so now how I found my neuro kinetic therapist, he’s across the thing from a nail polish place.
Bear Herbert 25:10
I came with my elderly neighbor because there’s a dentist there too to help her support her to get her dentures but then fingernail polish triggered me and I liked it’s I’ll I was in the Val I could see colors and different energies and I walked by this office neuro kinetic therapy, and it says multi-dimensional healing neuro kinetic therapy and strength training.
Bear Herbert 25:37
And I went open the door like four times and talked myself out of it and walked away about the fifth time the gentleman opened the door and he was biting. So I’m like, Are you a stroke fisherman I kind of cocked my head like a dog 20 degrees to kind of get a different view, you know? And he’s not but he has archeological issues as well. But smells are what will trigger me to just get out of my body whether I want to or not, and I have no control over it.
Bill Gasiamis 26:06
And when you’re out of your body, what do you experience that’s different? So are you in your body now or out of your body now?
Bear Herbert 26:12
I am in this human suit. I’m very aware of my nose on my face. And I can see you I can see my hands. When I’m out of my body. It depends on where I’m at. I got diagnosed as a cataplexy tick in 2002, as well. I got into a head-on in 2001, I got this little teeny cut underneath my eyelid. And I had a head-on with the 2000 Peter bill and smashed my skull and my sinus cavities in.
Bear Herbert 26:45
And I have not slept but one or two hours a night since then on average. But now I’m able to do more because of all these beautiful things. But when that happened when the doctor diagnosed me with cataplexy, they asked me he said, Do you sleep Ababa? We’re talking about it. And I told them, I’m not even here. Yes. What do you mean, you’re not here? And I pointed back up to my right shoulder.
Bear Herbert 27:15
And I could see myself sitting up there watching. And he looks up. And he says, What the hell are you looking at? And I said I’m looking at me talking to you. And he had something spilled on his shirt. And I could see it from up there. But I couldn’t.
Bear Herbert 27:33
I wasn’t in my body to see what was on his shirt. But I told him, he had some mustard or whatever. And he’s like, this is creepy Bear. I’m like, sorry, I don’t mean to freak you out. Just, I’m trying to answer your questions. I don’t understand my reality either. And I’m comfortable. Making love to the mystery, of what all this is.
Synesthesia and mystical experiences of Bear Herbert
Bill Gasiamis 27:57
I love it. I love that you’re comfortable with that. Because I believe people when they tell me that they have these experiences, I don’t mind. I don’t get it. I don’t know what it’s like, but I’m cool with it. If that’s what you’re having no problem with. The cataplexy is the sudden loss of muscle tone while a person is awake. So, you’re in your life, you have these interesting things that happen.
Bill Gasiamis 28:25
One of them is you go nonverbal, and there’s you’re not you don’t know your nonverbal and you try and communicate and it’s you think you’re communicating but the other person can’t hear you. You also have cataplexy sudden loss of muscle tone while you’re awake. So is cataplexy something that you are aware of you know that it’s happened? How does it affect you? Are you not able to stand up? Are you not able to walk? How does it work?
Bear Herbert 29:00
That’s usually when I disassociate is when that happens. And that’s how that whole apothem conversation and why starting God on was because that’s the closest thing I can relate it to that people might understand to grab a hold of, but I just go away from myself, but I’m also hyper, hyper-aware, I have, I have these glasses that I had on my face, and I took them off.
Bear Herbert 29:32
If I have my glasses on, everything is clear to me because they’re prescription glasses. If I have them off, everything is a little bit fuzzy, and I don’t get hyper-fixated on things. And I’m able to have a conversation with people. So when I go into a business or a doctor’s office, I take my glasses off so I can instead of just zoning out on the details of their face As in the colors of their eyes, and just going off on some weird tangent in my soul.
Bill Gasiamis 30:05
Bear. This sounds like a mushroom trip.
Bear Herbert 30:08
It feels quite like one.
Bill Gasiamis 30:11
Okay, because I’ve had the pleasure a few times, right? So then what that reminded me of was when I’ve had some mushrooms, what it’s done is made me hyper-aware of things, and looking at myself in the mirror is quite an experience. Now, some people listening to this podcast have never heard me talk about this kind of stuff before and they might be going, Whoa, who is this guy? I’m not anyone that I don’t have a lifelike bear. But I have had a curiosity, since the stroke about what life is what else is possible, and what else we can see.
Bill Gasiamis 30:49
And let me tell you that mushrooms, a small amount of mushrooms from the right person, and all that kind of stuff in the right setup, and the right location, which usually is in a dark room in my house. Reminds me of what you’re saying. It makes me see colors and sounds and faces and voices and things that aren’t there that I experienced that are pleasant to experience.
Bill Gasiamis 31:21
Because it’s in a controlled environment. I don’t have to explain it to anybody. And, it’s quiet. Man, it’s like holistic in that you feel your body, your spirit, you know, all your senses. Everything is having the experience. It’s just not my imagination. Do you know what I mean? It’s beyond my imagination.
Bear Herbert 31:46
I live in that place.
Bill Gasiamis 31:48
Okay. All right. So I understand you. Okay, cool. Well, that’s what I’m trying to do understand you. So it’s not an imagination thing. It’s an actual full experience. It’s physical, it’s emotional. It’s spiritual. It’s everything.
Bear Herbert 32:05
Are you familiar with CS Lewis, and his writings? Chronicles of Narnia, or any of that stuff.
Bill Gasiamis 32:17
Oh, okay. Yes. Okay. I understand I know that book and movie.
Bear Herbert 32:22
Yeah, he, was an author at the same time as Tolkien. And they were both theologians. And that’s what they were doing writing allegories, and all this stuff. And he’s got a great book, it’s called Into the Awe. That’s where I live. I live in this mystic moment. And have my whole life. And another cool thing. My oldest daughter when she was in high school, did a presentation for whatever it was in school, but I have synesthesia as well, but not classical synesthesia.
Bill Gasiamis 33:03
One second. One second, we need to explain that I’ll bring it up.
Bear Herbert 33:08
I’m a case brother.
Bill Gasiamis 33:10
You are man, it’s such a bookcase from my perspective. I don’t know what it’s like to be. Okay, great. That’s excellent. So synesthesia is when your brain routes sensory information through multiple, unrelated senses, causing you to experience more than one sense simultaneously. So to give people who are listening an understanding.
Bear Herbert 33:38
Ratatouille, the about the rat? That’s synesthesia. When he’s tasting the food and seeing all the colors and all it’s the closest way I can touch it with somebody that Oh, and if they don’t know the movie they watching. Damn, that’s pretty fun.
Bill Gasiamis 33:58
Yeah, so will they get the experience of a sense of taste? And they experience it also in colors and movement and perhaps even in sound? And in a different feeling? Beyond just the flavor, it’s beyond the tongue. It also happens elsewhere.
Bear Herbert 34:18
In the spiritual realm,
Bill Gasiamis 34:19
yeah. Okay. Sometimes people come and have synesthesia where they were a feeling an emotional feeling beyond an emotional feeling. It has a color, it has a sound, it has a whole theatrical experience that goes with it.
Bear Herbert 34:43
The coolest thing I’ve ever experienced in that same phase of discovery and recovery, my daughter took me to the Central Oregon Symphony. And it was just the most emotionally, mentally, physically spiritually elating almost orgasmic experience, because every sense that I have in my body and I have a little bit more extra than most was just completely elated.
Bear Herbert 35:23
It was the most beautiful thing. And we came out and there were big giant snowflakes and the snowflakes were falling with the music I was just experiencing. So it went with me for about four hours into the rest of my evening when we left.
Bill Gasiamis 35:40
Did you pay extra for that event? Because you sound like you should have paid extra.
Bear Herbert 35:46
I feel like I should have. But it was a free cool thing that my daughter was able to get in for us. And it was pretty, pretty enjoyable.
Bill Gasiamis 35:56
All right. I know we’ve like gone off the topic of stroke. But we’re gonna get back there I promise we’re going to talk about stroke. But this is way more fun for right now. So how old are you now?
Bear Herbert 36:11
I just turned 40 Last April 29. This April 29. I’ll be 41
Bill Gasiamis 36:17
Do you have a family? What does the family situation look like?
Bear Herbert 36:21
I have one son, but that’s not any part of my life, unfortunately. And I have four daughters. And two of them are out of the house. And I had the pleasure of enjoying my first granddaughter in November. My oldest daughter graduated from COCC Community College with a degree in automotive. And she’s a lead mechanic for the city. And then my 18-year-old is at home with me and my 14-year-old.
Bear Herbert 36:58
My 18-year-old is going to COCC for aviation. So she’s flying around right now. I enrolled at COCC myself to get my GED and also to explore things that I know way more about than most human suits just because of who I am and what I’ve been through, like stones talking to me and all this weird stuff. But I want to learn from the professionals so I can hone my speaking abilities and understand when I need to just shut up and listen and the things I need to say and not say that’s my next goal in life.
Bill Gasiamis 37:40
Okay, I love that. So I was going to ask you about how your life has been. Because I imagine that most people are not as receptive to your stories about what you’re experiencing as I am. And some people might even think that you need psychological or mental counseling or therapy. So that’s why I asked you about your family. Is there anyone else in your family that has some of this experience that you have? Or are you the only one?
Bear Herbert 38:15
Just me.
Bill Gasiamis 38:17
Have you ever met anyone that’s like you or similar to you in the world, that you bumped into down the road somewhere? And then they said, Hey, man.
Bear Herbert 38:27
Somewhat, I’ve got this way of being like I said, and I am a creator’s noble heart for whatever that means to anybody. And so one of my jobs, I had my own business. And as going out the door late for work, was my schedule. So I’m only one new as late putting boots on jumping out of the, you know, into my truck. And there was a vehicle running off the road down the road, he was trying to run people off.
Bear Herbert 38:59
And I asked the creator and my guides to give me some advice here. And that’s what I always do. I never get scared. I’ve never gotten scared. But I’ve been very concerned a lot of times. And that’s what I do. I asked my guides and creator to put wisdom in me or angelic human suits that have angelic hosts in my path to help me and that’s what happened. But in this particular event, I got in front of the vehicle and was able to stop him and he ran into my truck a few times.
Bear Herbert 39:34
But when I stopped him and got out to talk to him, I could tell he was having a massive stroke. Because my mom had strokes her whole life. My grandpa had stroked his whole life. So I’m very very adept at it. I watched my mom get resuscitated 14 times before I was 14 years old. And this man became a great friend I saved his life and he and my family went on this great hunt and did all this beautiful stuff. So I run into stroke patients all the time. That’s divine appointments.
Bill Gasiamis 40:07
Did you say your mom and your grandfather had strokes? Same condition?
Bear Herbert 40:11
My grandpa had lupus. And my mom did.
Bill Gasiamis 40:16
Okay. All right. So that makes sense. So you have experienced that side of stroke regularly in that you know what to say, You know what, to what it looks like, you know how to potentially visualize it and diagnose that somebody is unwell. Being unwell in that particular way might be a stroke because you’ve seen it so many times. Were they heavily impacted by what the strokes did to them with a disability? Or did they have deficits that they lived with?
Bear Herbert 40:50
My mom did, my mom ended up with kidney failure, and with the lupus and on dialysis and stuff, my grandfather lived to be 92 years old. And he was the roving mechanic for northeastern Utah. And he was just a billy goat and a wonderful individual.
Bear Herbert 41:13
And he’s had deficits and stuff, and I just thought it was grandpa through the years, you know, but I understand now after having so many strokes, myself, and what that looked like for him, you know, makes me have a lot more empathy for, and also empathy and encouragement for the tenacity that my grandfather had. And just the sheer grit of that bastard was just absolutely amazing.
Bill Gasiamis 41:48
Those old-timers are a different breed. And let me tell you,
Bear Herbert 41:52
Yeah, they’re pretty amazing. All my grandfathers, they always called me sweetheart. And they came to me in the hospital when I was catastrophic. And, before that, I can get my blood drawn out of my main vein without passing out because of the pressure differential, I can taste it and fill it. And I just saw that I worked with psychologists for years to start taking blood draws without passing out.
Bear Herbert 42:23
And then when I went to into the hospital, that was what that was for was to prepare me for that because I had four IVs, going 24/7 for two and a half months. But I was there the reason why I was there was to be kind of a minister to the disembodied human suits because it’s disorienting when you lose your life to trauma.
Bear Herbert 42:49
You don’t know what to do. So I was able to be there and help people understand if you want to travel on, feel free, but if there’s something you want to stay here for, you’re more than welcome to come back. And that kind of lets people pass with a lot more dignity. I think, just being the weird person I am.
Bill Gasiamis 43:11
Yeah. You’re a minister for what? For the disembodied human suits. Okay. So where are you doing this work?
Bear Herbert 43:20
It was at the hospital, I was actually on the I was on the cardiac arrest unit floor. And that’s the most traumatic floor of the hospital. And my window was ace feasting window. So the sun was coming up in my window, and the helicopter would land and the ambulance would show up to unload people. But as they were showing up, I would see their light bodies just poof.
Bear Herbert 43:49
And I’m like, oh my god, this is why I’m here. I don’t want to do this. I don’t want to do this. And then when they came to me, my highest self and my grandfather’s that going on towards the last days before I started having more of those strokes and getting the MRI machine. They told me the reason why you couldn’t hear what we said was trying to tell you would use going to face when he’s driving here was because we got to work on you.
Bear Herbert 44:16
And we need you to participate in it. I said what do you mean? And they said, Well, I’ve had cluster migraines my whole life since a child and they said, We’re going to take these migraines away through some of these strokes, but we need you to participate. And like okay, what does that mean?
Bear Herbert 44:36
They said, just let your body do what it normally does when you start feeling these odd feelings and work with us. And so I did, and I don’t understand it. But I said yes to the mystery of it all. That’s the key to a successful life and a human suit. Saying yes to the mysteries of life. And it was rewired. I have had no Oh, no cluster migraines since that day.
Say yes to the mysteries of life – Bear HerbertBill Gasiamis 45:03
I love that. That is really good advice, regardless of which realm you live in. It’s like, say yes to the, what was it to the? The mysteries and the opportunities? Yeah, yeah. That’s another way of saying a bit curious and go with your curiosity and discover and learn and find out about things. Now. Your comments earlier, you’ve had many, many, many strokes in the form of small blood clots, etc.
Bill Gasiamis 45:34
And I’ve had three brain hemorrhages. And when I tell people, they look at me, and they go, Oh, you don’t look like you’ve had a stroke. Or, you look great. And all that kind of stuff that you don’t look like somebody who’s had multiple, many, many, many, many, many strokes. So why is that? Why don’t you look like a normal? Suppose a stroke survivor has a deficit. Who has been challenged with things? Why is that? You know, why can anyone tell you why
Bear Herbert 46:09
I can tell everybody why, but whether, they choose to believe it or not, that’s up to them. It is because I know who I am. And I know where I’m from. And I don’t want to get all esoteric on you. Because there’s no point in all of that, however, it’s because of my soul, and where it’s from, and what my mission is. And I am here to there are a lot of Val Walkers ambulating the face of the earth right now, avail Walker is a person who has lost their life and the human suit, and come back to the same human suit.
Bear Herbert 46:47
There’s more of us right now on the face of the earth than any other epoch of humanity. And why we are here specifically at this time, is because of this great ascension that is happening in the cosmos that is affecting the human suits on a water planet, and human suits are made of water. We are dipole antennas, for Spirit. Therefore, we are here to help the human students ground themselves and get in touch with sources as much as they can to cleave the things that are going to help us progress as a species.
Bear Herbert 47:28
And there’s been four bifurcations, that’s happened in the last eight years that I’ve seen and tasted happening. And what that all means for us right now is the old things aren’t going to suffice. And ambiguities, misleading things, half-truths, that shit is gone.
Bear Herbert 47:52
And what’s going to happen is people that are ambulating with a proper heart posture of truth, clarity, and as almost what you do when you ambulate with a heart posture, you almost and you will ultimately end up activating your clairvoyant mind because we all have clairvoyance, see with us and within us.
Bear Herbert 48:22
And that was part of the strokes. When I thought I was talking, I was communicating with everybody. But they didn’t have the same bandwidth to do the telepathy thing. And so that’s why I was so befuddled by it all. Sorry, I talk in circles, but they all come together.
Bill Gasiamis 48:40
They do. You do talk in circles. It’s interesting to hear. So. Okay, so then that’s a cool explanation as to why you don’t look like you’ve had a stroke. But then you know that you’ve had a stroke? or multiple strokes? Do any of those multiple strokes affect you with the standard face-arm speech type of symptoms?
Bill Gasiamis 49:09
Do you know that it’s happened? When do you become aware of it? And then how do you take action around there since you know about stroke, and you’ve seen people have strokes, your grandfather and your mother? But how do you experience a stroke?
Bear Herbert 49:27
My big one is in 2016 sort of side years after I felt like my face was this right side of my face was a melted pepperoni pizza just dangling. And I’d look at myself in the mirror, shake my face, and see that it wasn’t there. But I would fill it with my hand and I could fill the drippy cheese and all this weird stuff. And now, the whole right side of my body is completely numb. I can’t feel my right side.
Bear Herbert 50:00
My body period. And I’ve had to learn how to walk and talk multiples upon multiples. I’m going back to school now. And so I’ve had to have been forced to start writing again. And the first time I started writing left-handed to try to do that, but it didn’t work. Now I’m just doing it with the math and stuff. And for the first two weeks, it looked like I was writing some sort of Egyptian glyphs of some sort. It didn’t even look like words or letters.
Bear Herbert 50:38
I don’t understand why. But once I started doing it and the teacher, I was open with her and what I was going through. And she’s like, Well, I’ll try to write this. And I look at her like, Are you freaking kidding me? And she looks at me like, Yeah, I’m not kidding.
Bear Herbert 50:55
And so I try it. And I’m like, Whoa, and I have a mental palate. And when I do it the proper way, what she was telling me, I can feel and taste those new neurons, neuro pathways connecting, and it’s like electricity going right through my hand and everything.
Bear Herbert 51:13
And I’m like, This is my num hand, too. I’m like, and I’ll just Woo and she looks at me like, What am I sorry, I just got a job. You got to have fun with life. And we can be crusty crabs, or we can put it on the light side of life and try to laugh through I’d rather laugh than cry. I’ve done too much crying in my wife.
Bill Gasiamis 51:35
So are you on any medication for the conditions that you’ve been diagnosed with? Especially the sticky blood, I imagine doctors would want you to want to get a blood thinner.
Bear Herbert 51:48
They I had been on Eliquis for years. And then the doctor went to refill them. And he told me I had to go on warfarin. I said I can’t go on warfarin. He said, why? I said because blood will squirt out of my belly button. He said, That’s impossible. And I’m like, Well, I’m not doing it. They said, Well, I’m not filling your meds. And so I took steps to go to the doctor anymore for seven years.
Bear Herbert 52:20
And that’s how I went catastrophic. Okay, and so when I went to the hospital, they put me on more friend, and one of the nurses, the nurse, nurse audiologist, came into the room, I pushed the button in the bathroom. So I need to talk to you to show you okay, I said yeah, just need to come in here she came. I said, brace yourself. She just said what’s going on? I stood up and opened my hospital gown and blood squirted out of my belly button, and squirted all over her and she almost passed out.
Spirituality, mysticism, and visionsBill Gasiamis 52:54
And why was that happening?
Bear Herbert 52:57
Because Warfarin is a rat poison. That’s what it is. That’s how it thins your blood. They use it for rat poison because that’s how it kills rats. After all, they bleed to death inside. And I’m just this weird ass amalgam of the human spirit that works way differently than most.
Bill Gasiamis 53:19
But how did you know it was gonna bleed out of your belly? And then how was I heard out of your bag? I had
Bear Herbert 53:24
no idea other than the fact that I’ve seen it before. And I don’t know when and how if it was in a different life, or I have no idea. I don’t know how to get congruently in these things. That’s the biggest frustration for me is experiencing the mystic all the time, but not having any congruence in it to be able to explain it to other human suits to grab a hold of as a tangible container for them to understand it.
Bill Gasiamis 53:54
Human suits you describe us as human suits. You don’t see yourself in the same way. How do you see yourself and how do you see other people like me?
Bear Herbert 54:06
I am a human suit. I am completely anchored in this thing again because of Dave Edlund. But to answer your question more poignantly we are all spirit 100%. And if and spirit has no color. And so in one of my last lives, I was a black woman. And when I was a little kid, I had to drag around this little black baby naked baby doll and my parents would say, Who is that? A said that’s me.
Bear Herbert 54:40
And they’ll Haha No. And they didn’t believe me. And then I found a picture of it and the album’s the other day. I’m like, Oh, my God, I remembered it just like it’s like, Highlander scene from the Highlander movies. It’s a quick I mean, you just, you just get the memory and the light memory of that time and place and so if Bill had his whole Majesty in that beautiful human suit you were around, you cannot hold it, you would burst asunder is too much plasma too much light, you couldn’t be able to anchor it in your body.
Bear Herbert 55:20
So you’ve got a seventh of Your Majesty within your human suit. Also, the solar flares, are plasma from the sun. And they update us as human suits when the people tell you don’t give them the sun because it will cause cancer and all this stuff. That’s not necessarily the truth. However, the things they sell you to put on your skin are toxic to you, and the water you go in is not good for you.
Bear Herbert 55:53
And so, if also, if the world had more human suits that were fully activated, that’s what I do now, I go around activating people, I have a proclivity for Hazel-eyed brothers and sisters because I feel like we have a deeper sense of soul. And so when I talk to people on their Hazel alive, I can start talking to them.
Bear Herbert 56:15
And when I start talking to them, the hairs on my arm will start standing up. And that is a spiritual response to something resonating with your spirit. You have muscles in your skin called erector Pillai muscles. And so when things ping on that your spirit goes, whoa. And so I start talking to these hazle-eyed Brothers and sisters and telling these things, and then they start looking at their skin and it’s doing that.
Bear Herbert 56:44
And what I do, I said, can I touch you? And if they say, Yes, I grab their hands. And I tell them, whatever made you feel this way, right now, cleave to that, that is what ignites your spirit, that’s what’s going to make you the human suit, angelic hosts you need to be to help the people around you. And that’s kind of how I live my life.
Bear Herbert 57:08
And if all the human suits were completely awake and engaged, the Earth could handle it, the Earth would burst asunder because there’s just too much light energy just for through our bodies. So everything is imbalanced as it should be. Whether it sounds crazy or not, it just is what it is. And I’m just grateful to be part of it. And be able to see these experiences and taste them in such lavish, robust ways.
Bill Gasiamis 57:50
You’ve always explained in our conversation, you’ve always explained these things as particular. You know, they seem to be quite positive experiences, does the taste ever become not nice? Do you ever have experiences where the visions or the visual aspect of it and the synesthesia is a not pleasant experience?
Bear Herbert 58:14
Yeah, it’s not good. It’s not good at all. It’s, it’s like all that embodies the thought of what evil might be shows up. And the worst part for me was in the convalescent centers being completely nonverbal and having the staff molest and rate me and stuff. Because I was just invalid, that kind of talk from their viewpoint.
Bear Herbert 58:44
And when those things were happening to me, it was the most disgusting, terrible taste on the mental palate you could imagine. It was the closest I could imagine because what it tasted like physically was the second time my appendix hole ruptured all of those things that I experienced these times were the same, they had that green, yellow, moldy, putrid flavor. On the mental palate, it’s like your soul has been raped. I do a lot of advocacy for human trafficking stuff too, because of the way I see things and all that stuff, too.
Trauma, abuse, and mental healthBill Gasiamis 59:35
Were you a kid when that was happening to you?
Bear Herbert 59:38
No, that was actually as an adult, young adult, here in Central Oregon.
Bill Gasiamis 59:44
So you had been nonverbal a few times.
Bear Herbert 59:48
Yeah, a lot of times.
Bill Gasiamis 59:51
And that those times, always ended up in hospitalizations.
Bear Herbert 59:56
99% of the time.
Bill Gasiamis 1:00:00
And then were there was anyone ever able to intervene during those experiences where other people mistreated you? Did those things get sorted and resolved, people get taken.
Bear Herbert 1:00:20
Now, nobody came to task for any of those things. One of the first ones I was an adult, considered an adult, and they put me in a rehabilitation center right here by this building I’m in. And it was a wonderful place, and they had a Zen garden outside and all this beautiful stuff.
Bear Herbert 1:00:42
But four patients were in there too. And they were all women. It wasn’t the staff that did that, but it was the patients themselves. And they had come into my room and did those things to me. And then when I got out of those situations, I was a ward of the state and considered they put me in adult foster care.
Bill Gasiamis 1:01:08
Were you nonverbal as well as catatonic or what was your state?
Bear Herbert 1:01:13
Sometimes it comes in and vacillates.
Bill Gasiamis 1:01:17
Okay, so people to take advantage of a situation like that you’d have to be not able to defend yourself. Is that a state in which you’re unable to defend yourself?
Bear Herbert 1:01:27
Completely catatonic.
Bill Gasiamis 1:01:28
Just okay. All right. So you’re talking about this very matter-of-fact? Is it a matter of fact, are you okay talking about this? Have you dealt with this kind of stuff?
Bear Herbert 1:01:45
I’m cool talking about it, people need to know, the knees, there needs to be a picture that’s properly painted, especially for this center that I’m about to embark in. For people to understand what the reality could be without having something like this east of the Cascades.
Bill Gasiamis 1:02:05
Do people find it difficult to hang around with you? Because your conversation goes to so many places, you’re the kind of guy, in Australia, we’ve got this thing that we do, right, which is, when you ask somebody, Hi, how are you? You’re not interested in their answer. You just say hi, how are you? And the other person says, Good. And then they say, how are you? And you say, good.
Bill Gasiamis 1:02:31
And then that’s considered like a long-form greeting, right? But you seem like the kind of guy if I said, Hey, Bear, how are you? If I asked you that question, I’d get a 10-minute answer. Are you as a result of that? Are you difficult to hang around with? I’m not saying that I wouldn’t want to hang around with you or whatever. But I find that many people because I’ve asked you questions I’ve tried to make this conversation about stroke.
Bill Gasiamis 1:02:58
It’s not going to be about stroke. And I’m cool with that.
Bear Herbert 1:03:02
I’m sorry. Thank you.
Bill Gasiamis 1:03:03
Yeah, that’s all right. And then it’s like, how do people interact with you? Do people interact with you? Do they struggle to interact? Because I imagine that most people are not prepared to go down this path with you. How do you interact with people? It’s so interesting.
Bear Herbert 1:03:26
A poignant answer is the way forward for us now, understanding that and therefore, the people that are close to me in my life like my family and stuff. I wear them thin, quick. However, out in public and stuff, I’m just a magnet to other people. I mean, people come up to me and start telling you some of the most outlandish stuff that’s personal to them that they are going through have been going through.
Bear Herbert 1:04:01
Because I am that dipole antenna and my energy is very enveloping, and I am a spirit of unconditional love. And a lot of people get it twisted in their constructs and their own mental space. Some people think that I am an entity that wants to be with them and stuff intimately. And it’s like, you know, I just love you and whatever you’re going through, I’m here for you as much as I can be.
Bear Herbert 1:04:38
But that’s where it stops. So in public, I do very, very well, especially with my devices. I kicked open the door in the ethereal realm again to start the Traumatic Brain Injury Awareness group here in Central Oregon. And I wear a necklace on my neck that has Essential Oil and that’s overwhelming to my factories so I don’t mess up.
Bear Herbert 1:05:05
But there are people more sensitive than me. So I need to charge my ozone machine and wear it around my neck so that way I can be buffered from all these smells. But still not push other people over the edge. I’m a very considerate motormouth, I guess you could say.
Bill Gasiamis 1:05:26
So you consider yourself a motormouth. And that’s probably the terminology that somebody might use to describe. Bear that Motormouth Edge starts talking anyway and never ends this type of situation. I’ve heard it a lot. Okay, okay. All right. So you’re very aware of yourself, you are quite familiar with how you are experiencing the world by other people, etc. Now I relate to something that you just said, I relate to being in the street, it’s a lot of people.
Bill Gasiamis 1:05:56
And then it’s like, I get picked out or singled out by the homeless person, and they make a beeline for me. And they say to me, have you got some change, and there’s 1000 people around me. And I’ve it’s happened once or twice, and I didn’t think anything of it. But it happens all the time. And I’ve started to notice a pattern.
Bill Gasiamis 1:06:16
And of course, I always go into the central business district with change, because I now know that I’m going to get asked, and if somebody asks, I want to be able to give somebody three or $4, to buy a coffee or whatever, or to add to the collection of coins so that they can achieve what they need to achieve for that particular day. And also, you’re the kind of guy that I run into a lot. And I’m not saying that.
Bill Gasiamis 1:06:47
And I say that because I will stop, something will stop me or I’ll have an interaction with somebody that seems benign. And then I’ll be going into places with them after I’ve just met them that I shouldn’t have ever expected to go. And when requires having conversations about things that we should never have expected. So I can relate to that part. And I get rather than try and wrap people like you up, wrap you up and say, Well, I’m done. I’ve gotta go.
Bill Gasiamis 1:07:21
Or I’m not interested in that. I am curious about what they have to say where and where they’re at and what they’re talking about. And you’re not the first person I’ve come across who has told me about these types of conditions or since they are I call them conditions for lack of lack of me being able to describe them.
Bill Gasiamis 1:07:21
But synesthesia and all these experiences and other realms and out of the body and in body and crossing the boundaries between the two. And then you said something else that’s interesting. Which are Hazel-eyed people why Hazel-eyed people why not blue why not green? Why Hazel? And do you know what color my eyes are?
Bear Herbert 1:08:08
I’m assuming they’re Hazel, but I don’t know.
Bill Gasiamis 1:08:10
Well, there’s a bit of green in the middle. And they’re hazel, and they change but mostly, if you look at my eyes, you think they’re Hazel or brown people will describe them as brown. If you go be closer you get to see the green tinges so why Hazel?
Bear Herbert 1:08:30
That’s the part of the question. And I’m saying that I will go break into deep esoteric.
Bill Gasiamis 1:08:43
Narrow it down, just give me the because answer or the very simple one. Like you said, Why not blue? Why not green? Why not black?
Why the need to connect?
Bear Herbert 1:08:56
The Hazel is more anchored into the great root race that hasn’t been truly activated on this plane yet. Has nothing to do with color or ethnicity. It’s a spiritual place where it’s from.
Bill Gasiamis 1:09:14
Okay, I don’t know what that means. And maybe we shouldn’t go into it. But like, I had to ask that something was making me ask. That’s cool. So why did you feel the need because you seem like you’re very able to be adaptable, you’re very able to come to terms with things that are going on that have happened to you that you’re experiencing. Why did you feel the need to connect with a group of people on an Instagram page, which is about recovery after a stroke? What drew you to there?
Bear Herbert 1:09:56
Everybody who’s been through a stroke is just an inspiration to all of humanity, whether humanity wants to realize it or not. But each one of us is a major asset to the whole of humanity because we’ve been to places that are darker and more disruptive to the soul than 99% of the human suits ambulating the face of the earth right now.
Bill Gasiamis 1:10:20
Wow.
Bear Herbert 1:10:23
That’s the short answer.
Emotional recovery and the warrior heart concept introducedBill Gasiamis 1:10:24
I can relate to that. I know what you mean. Okay. So what do you feel like a kinship with people who have had a stroke?
Bear Herbert 1:10:35
One more time, please.
Bill Gasiamis 1:10:36
Do you feel a kinship with people who have had a stroke?
Bear Herbert 1:10:41
Yes, absolutely. I feel like they’re my brothers and sisters on different levels and other people can’t possibly comprehend.
Bill Gasiamis 1:10:50
Okay. I was going to ask you, are they the people you relate to the most?
Bear Herbert 1:10:57
Yep.
Bill Gasiamis 1:10:58
Okay.
Bear Herbert 1:10:59
I get it. Because usually, we’re the most looked down on in society as well. Just how things happen, I don’t understand it, but I see it and I taste it and with me, how I understand how I affect others, I can feel and taste their energy. And if people are more attracted and want to talk to me, I can feel and hear it a block away. And I’ve had a choice in the past part of my life to where I could run away from it and I have, and they always find me anyways.
Bear Herbert 1:11:34
So I have decided to stop running from anything. And I needed to know, I know, I’m about to, you’re the springboard for me into what I’m walking into. Now, I appreciate this opportunity more than I can properly convey.
Bear Herbert 1:11:51
But I am about to enter a phase in my life of international speaking engagements of different kinds and sorts when I needed to break this ice for myself and my consciousness to say, you can do this. Don’t be afraid. Don’t be a scary bear. But be that warrior heart that you are, and faith with integrity, and poignancy, and please don’t walk in circles there, but I did.
Bill Gasiamis 1:12:29
The warrior’s heart is an interesting term that you use to tell me what is a warrwarrior’srt. One of the things that stroke survivors miss in their recovery is doing the work that’s related to the heart, the heart, the emotional work. So what they do is because we’re such a head-based society, we all do the head-based recovery, it’s like, well, we have to fix the brain because the breaks brain has been damaged, which I agree with, it’s perfectly fine.
Bill Gasiamis 1:12:59
We get stuck there. And often then people who can’t walk or move one of their limbs, go into a physical recovery. But very rarely do I come across stroke survivors who have had an emotional recovery or heart-based recovery and in my book, there’s a chapter called The Heart Brain Bear. So tell me why. Why the warrior heart how did you come up with that term? What does that mean? The warrior’s heart.
Bear Herbert 1:13:29
For me, personally, the most poignant I can put it without going into all the rabbit trails that need to be gone into to flesh it out properly. William Wilberforce is the original abolitionist in the modern era. He is the English Parliament Terry that got the abolishment of the clamp, transatlantic slave trade.
Spirituality, consciousness, and personal growth after multiple strokesBear Herbert 1:14:01
I am a complete abolitionist at heart. So I have to feed my heart properly to be able to properly ambulate my mission and cute and execute my mission in this human suit because I’m done. I’m not reincarnating in this place again. So I’ve got things I have to get done. And that puts a lot of fire in my soul and still into my words.
Bill Gasiamis 1:14:46
Your experience, you’re out of body out of the human suit experience that you have. Is that a heart-based experience? If you can associate it with intelligence in your body is a heart-based experience because we have neurons in our gut, we have neurons in our eyes, we have neurons in our brain, and we have neurons in our heart. There are neurons throughout our nervous system.
Bill Gasiamis 1:15:22
And I consider them intelligences. The eyes, for example, are part of your brain, and they are the external part of the brain, they are part of the brain that has evolved to be outside of the head to bring in information and allow us to transverse the planet. And to get around and to be safe and to avoid obstacles and all that type of stuff to give us information. So your out-of-human-suit experience is what kind of experience can you associate it with in the human realm?
Bear Herbert 1:16:02
It is connected to the heart, but it is completely other than the heart. People that are very religiously dogmatic, understand it to a very, very, very fine detail because of their dogmas and the different rituals, and the different relations they get from their different religious practices. So it’s pure, an unbridled spirituality.
Bear Herbert 1:16:38
For me, it’s just I’m living my naked self, my soul bared to the universe, and my heart is on fire, just doing battle in the angelic realms. And that’s who I am. I’m a warrior. And I imagine when I was a black woman, I was probably a beautiful Amazonian warrior as well, I’m assuming because that’s my soul. You know?
Bill Gasiamis 1:17:11
Why not? What do you hope to speak about when you get to the stage?
Bear Herbert 1:17:24
The enlightenment that needs to come to humans suits their development, and treat each other the way it needs to be done. None of us are more important than the other. We’re all super interconnected, possibly way more than we can imagine.
Bear Herbert 1:17:44
We are the universe expressing ourselves through these human suits. And once we grab a hold of that, literally in our minds and souls, that is when the biggest shift for humanity is going to anchor in and new days are on the way. I just need to figure out a better way and polish myself enough to not do my rabbit trail job or drabble that makes people nauseated by talking to me.
Bill Gasiamis 1:18:19
Yep, that’d be part of your training, you’re gonna have to come up with a script. Practice that script, memorize it, you know, have an opening, have a middle part, have a conclusion, and stick to it. And then just practice and practice and practice and get to the point where you can just get that out.
Bill Gasiamis 1:18:41
Make sure it delivers the message. And then leave it at that because, you know, those spaces are always limited for time. Deep dives into these types of things are not always possible, but it’d be very interesting to hear you deliver such a well-structured.
Bear Herbert 1:19:07
I’m interested to see what it’s going to sound like too. I’ve never shirked away from anything in my life. The things scare me I jump in. As an adult, I worked on the drilling rigs, I was scared of heights, but I always worked on the Derrick’s 300 feet above the ground when things were moving and made to sway because I was scared of it. I’ve always been scared of snakes. I catch every snake I can see so I’m not scared of it. I was scared of public speaking. And so here I am talking to Dill. Doing the damn thing.
Bill Gasiamis 1:19:43
Yeah, it’s good. This is a gentle way to get into speaking publicly because it doesn’t have to be too structured. We can go all over the place that doesn’t matter. Right? But on a stage, you have to be a little more restricted in the way that you go about, which is cool.
Bill Gasiamis 1:20:01
I noticed when you answer a lot of my questions, you look up and your eyes kind of tend to tuck back behind your eyelids is that something that allows you to access the areas or the places where you need to go to get answers? Or is that just a human physical trait that you just have?
Bear Herbert 1:20:26
No, I’m getting memory and pulling my memory answers down out of my database, because we’re all human computers whether we realize it or not. So I look up to grab my information to come back to you.
Bill Gasiamis 1:20:45
That’s pretty common because people do that. Most people access their memories, either by looking up to the left or up to the right, most people will look up into the left. But you’re just more obvious, you have a very prominent way of going there, you go there with both eyes, and it’s almost straight up rather than up into the left and you spend a lot more time there than most people.
Bear Herbert 1:21:12
I taste it. That’s I think that’s why I’m lingering because I’m getting the flavors and the textures of everything I talk about are so deep and so beautiful. And trying to put that into poignant words is tough, especially for such an elaborate soul as mine.
The three questions for Bear HerbertBill Gasiamis 1:21:33
Okay, I get it. So, we’re going to ask you the three questions a lot of people get asked in the podcast for stroke survivors as we wrap up the episode. What is the hardest thing about a stroke for you?
Bear Herbert 1:21:54
The lack of empathy the world shows stroke patients is what burns me worse than anything.
Bill Gasiamis 1:22:03
Or enough. What has stroke taught you?
Bear Herbert 1:22:09
Resilience? Tenacity.
Bill Gasiamis 1:22:18
And what do you want to tell other stroke survivors? Allow yourself to go beyond the two-word answer for this next question, which is, what do you want to tell other stroke survivors who are going through something similar? That we’ve been through or just on their journey or they’re a little bit confused, they’ve found this podcast they don’t know how to deal with it, or what do you want to tell other stroke survivors? What would be your words of wisdom?
Bear Herbert 1:22:52
Not only are you important, but you’re an inspiration to this world. And to another human suit that has no comprehension of what you’re going through. And the lack of empathy that they show you should help foster and grow tenacity in your soul to be able to articulate properly, the depths and beauty of your soul to the world around you. Because you are an asset to this world. Like no other. You got this shit, you’re an inspiration to all of us. Kick ass!
Bill Gasiamis 1:23:38
That’s awesome. Bear thank you so much for joining me on the podcast.
Bear Herbert 1:23:43
Likewise, brother, I appreciate it.
Bill Gasiamis 1:23:46
Thanks for joining us on today’s episode to get a copy of my book about stroke recovery go to recoveryafterstroke.com/book. To learn more about my guests, including links to their social media, and download a transcript of the entire interview, go to recoveryafterstroke.com/episodes.
Bill Gasiamis 1:24:06
Thank you to everyone who has already left a review about the podcast on Spotify and iTunes, it means the world to me. Podcasts live and thrive because of reviews. And when you leave a review, you’re helping others in need of this type of content to find it easier. And that is making their stroke recovery just that little bit better.
Bill Gasiamis 1:24:29
Go ahead and leave a review and a few words about what you think the show means to you on iTunes and Spotify. I would deeply appreciate it if we wouldn’t have been able to get to episode 300 If people hadn’t supported the podcast in the way that they do by sharing it, commenting on YouTube videos, and leaving reviews on iTunes and Spotify.
Bill Gasiamis 1:24:52
So I appreciate it. If you’re watching on YouTube, and you comment below the video you’ll get a response from me if you’d like to like this episode that helps as well because YouTube then makes sure that other people get to see these videos. If you’re a stroke survivor with a story to share about your stroke experience, come and join me on the show. Interviews are not scripted, you do not have to plan for them.
Bill Gasiamis 1:25:18
All you need to do to qualify is be a stroke survivor who wants to share your story in the hope that you are going to help somebody else going through something similar. If you have a commercial product that you would like to promote that is related to supporting stroke survivors to recover, there is also a path for you to join me on a sponsored episode for the show.
Bill Gasiamis 1:25:40
For anyone interested in reaching out to me go to recoveryafterstroke.com/contact fill out the form explaining briefly which category you belong to, and I will respond with more details about how we can meet via Zoom. Thank you again for being here and listening. I appreciate you. So you’re on the next episode.
Intro 1:26:01
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals’ opinions and treatment protocols discussed during any podcast or the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.
Intro 1:26:18
All content on this website at any linked blog, podcast, or video material controlled by this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis. The content is intended to complement your medical treatment and support healing.
Intro 1:26:35
It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances, or health objectives. Do not use our content as a standalone resource to diagnose treat, cure, or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.
Intro 1:26:56
Never delay seeking advice or disregard the advice of a medical professional, your doctor, or your rehabilitation program based on our content. If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be, call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.
Intro 1:27:20
Medical information changes constantly. While we aim to provide current quality information in our content. We did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency, or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with the links we provide however third-party links from our website are followed at your own risk and we are not responsible for any information you find there.
The post Multiple Ischemic Stroke Recovery – Bear Herbert appeared first on Recovery After Stroke.
Understanding Traumatic Brain InjuryTraumatic brain injury (TBI) is a complex medical condition resulting from a sudden blow or jolt to the head, causing damage to the brain. At its core, TBI disrupts normal brain function, often leading to severe consequences if left untreated. Here, we delve into the depths of TBI, exploring its causes, symptoms, diagnosis, treatment options, and prevention strategies.
Causes of Traumatic Brain InjuryTBI can stem from various incidents, including:
- Accidents: Motor vehicle accidents, falls, and sports-related injuries are common culprits.
- Violence: Physical assaults, gunshot wounds, and combat injuries can inflict significant damage.
- Blast Injuries: Military personnel and civilians exposed to explosive blasts are at risk.
- Penetrating Injuries: Objects penetrating the skull, such as bullets or shattered fragments, can cause TBI.
Symptoms of Traumatic Brain InjuryThe symptoms of TBI can range from mild to severe and may include:
- Physical Symptoms: Headaches, nausea, vomiting, dizziness, and loss of coordination.
- Cognitive Symptoms: Memory problems, difficulty concentrating, and confusion.
- Emotional Symptoms: Mood swings, irritability, anxiety, and depression.
- Sensory Symptoms: Blurred vision, ringing in the ears, and sensitivity to light or sound.
Diagnosis and EvaluationDiagnosing TBI involves a comprehensive evaluation, which may include:
- Physical Examination: Assessing neurological function, reflexes, and motor skills.
- Imaging Studies: CT scans and MRIs help visualize brain injuries and assess their severity.
- Cognitive Tests: Evaluating memory, concentration, and cognitive abilities.
- Patient History: Gathering information about the injury, symptoms, and medical history.
Treatment ApproachesTreatment for TBI depends on the severity and type of injury, and may include:
- Monitoring and Observation: Mild cases may require only observation and rest.
- Medications: Pain relievers, anti-seizure drugs, and antidepressants may alleviate symptoms.
- Rehabilitation Therapy: Physical, occupational, and speech therapy help restore lost abilities.
- Surgery: In severe cases, surgery may be necessary to repair skull fractures or remove hematomas.
Preventing Traumatic Brain InjuryPrevention is key to reducing the risk of TBI. Some preventive measures include:
- Wearing Seatbelts: Properly restraining in vehicles can prevent head injuries during accidents.
- Using Helmets: Wearing helmets during sports activities, cycling, and motorcycling can protect the head.
- Fall Prevention: Installing handrails, using non-slip mats, and maintaining a clutter-free environment can prevent falls.
- Safety Measures: Adhering to safety guidelines at work and following firearm safety protocols can prevent TBI.cols);
In conclusion, understanding TBI is crucial for early detection, treatment, and prevention. By raising awareness and implementing preventive measures, we can mitigate the impact of traumatic brain injuries and enhance overall well-being.
After The Crash – Full Interview with Kelly TuttleKelly Tuttle, a neurology nurse practitioner living with an acquired brain injury stemming from an automobile collision, mirrors that of stroke survivors in many ways. Despite these variances, the impact on daily life remains similar. Kelly’s recent publication, “After the Crash,” serves as a guiding beacon for those traversing the arduous path of recovery from traumatic brain injuries.
Instagram
Kelly’s Website
Highlights:
00:00 Introduction
05:14 Decision-making after a car accident
10:02 What caused the traumatic brain injury
17:55 Common issues in seeing a neurologist
19:25 Physical Medicine Rehabilitative Doctor (PMR)
25:17 Bill’s Book The Unexpected Way That Stroke Became The Best Thing That Happened
27:06 Dealing with sensory overload and invisible challenges
33:00 Unknown dangers in contact sports
40:24 Navigating neurofatigue and noise cancellation technology.
50:24 The Book: After The Crash By Kelly Tuttle
1:00:27 Different learning curves
1:06:46 The hardest thing about TBI
1:07:37 What has TBI taught Kelly Tuttle
1:09:36 A piece of advice from Kelly Tuttle
Transcript:
Introduction – Kelly Tuttle
Bill Gasiamis 0:00
Hello, everybody, this is episode 299 my guest today is Kelly Tuttle, a neurology nurse practitioner who is living with an acquired brain injury that occurred not as a result of a stroke but rather from a traumatic brain injury. Also referred to as a TBI, which was caused by a rather dramatic automobile collision.
Bill Gasiamis 0:25
Her story and the challenges she is working to overcome bear a remarkable resemblance to that of a stroke survivor with some distinct differences in the way her diagnosis came to be. But a lot of similarities in how daily life has been impacted by the injury. Kelly recently published her book After the Crash, which is a guide for those navigating the challenging journey of recovery after a traumatic brain injury. Kelly Tuttle, welcome to the podcast.
Kelly Tuttle 0:58
Well, thank you for having me. I’m excited to talk to your listeners today.
Bill Gasiamis 1:01
Thank you for being here. You’re not a stroke survivor. And that’s okay. Because we don’t necessarily want everyone to be a stroke survivor who joins us on the podcast. But you are a TBI survivor. You had a traumatic brain injury at some point in your life, can you give us a little bit of an understanding of how that came about?
Kelly Tuttle 1:23
So I was driving home from work down a rural road and the driver pulled out in front of me at the last minute. And I ended up T boning them and being in a big car accident and thought I would shake off the car accident and get back into life. And as time went by, I found that was not the case.
Bill Gasiamis 1:52
So in the collision, how many people were in your car and how many people were in the other car?
Kelly Tuttle 1:58
Fortunately, no one was with me. And I think there was only one person in the other car.
Bill Gasiamis 2:05
I and if you T boned them. Did you touch them on the driver’s side or the passenger’s side?
Speaker 1 2:13
I hit the driver side of the other car I think the driver side.
Bill Gasiamis 2:21
And then what happens then? Do all the emergency services turn up? What’s the scene like after that?
Speaker 1 2:28
I was pretty terrible. Yeah, there’s glass everywhere. My car ended up being totaled, my engine was smoking, people came out from the homes that were along that street, traffic was stopped, and then I did say an ambulance came out, and then the police officers of course investigated the the car crash and since my car was not drivable, it was towed away.
Kelly Tuttle 3:06
I was taken with the police officers to kind of a local cafe to hang out waiting for my husband to pick me up because I was about over an hour away from home at the time so they couldn’t just leave me on the side of the road to wait to get picked up.
Kelly Tuttle 3:28
And I was offered to be taken to by ambulance but because of my nursing background, I did spend some time in the emergency room as a nurse. I just didn’t want to go by ambulance. Which you know, in hindsight was probably not too smart, but 2020.
Bill Gasiamis 3:52
Yeah. Is that because you thought I was not unwell enough? Or somebody else is probably going to need that ambulance that’s in more serious harm than me.
Kelly Tuttle 4:06
No, it was more of I know what happens to people in car accidents they usually get placed on a C spine board and a C collar which is extremely stiff so you can’t move your head and then you’re left on that board in the emergency room until a doctor can come and see you and they do a CT scan of your neck to make sure you don’t have a cervical fracture. And then you get released and examined for other injuries and I didn’t want it. No one did what I did. Please do not listen to what I just did.
Bill Gasiamis 4:53
I’m gonna gotta pick this scab a little further now Kelly. So you’re a nurse how many years in nursing at that stage?
Kelly Tuttle 5:09
Close to 3027 years, something like that.
Decision-making after a car accidentBill Gasiamis 5:13
And if you turned up on the scene, and there were another two people on that scene that were involved in their collision, and you were just a passerby, you would have said, I’m a nurse, everyone doesn’t do anything, don’t move, lay flat, do this, do that you would have taken control of the situation, you would have made sure don’t move your neck, you would have said all these things, you would have checked out everything.
Bill Gasiamis 5:36
But somehow that doesn’t apply to you. Because and don’t get me wrong, I see this, across all the people who I interviewed their stroke survivors, they might have a whole bunch of different backgrounds. But they never wake up in the morning thinking I’m going to have a stroke today so therefore, I’m going to do all the right things.
Bill Gasiamis 5:57
They always think it’s not going to happen to me. So you know that the procedure to protect the neck to make sure there are no fractures is to potentially save a life, and make sure that a disability doesn’t happen. Make sure that the person doesn’t end up not walking, or not being able to participate in life, etc. There’s a whole bunch of reasons why they do it. Did you feel well enough? And you made a decision based on how you felt that none of those things were necessary? I’m okay.
Kelly Tuttle 6:33
Well, it’s not like I had clear thinking. You know, your adrenaline’s going, you’re working off adrenaline. I’m not sure to this day, if I had lost consciousness. Obviously, in hindsight, I had a brain injury. And all I went into was thinking, not that it was good thinking, I’m not saying it was, I’m going to shake this off, I’m fine, I am gonna go to work the next day, I can’t take time off I was training for my third degree Black Belt in karate, and I’m training for the purple belt in Brazilian Jiu-Jitsu.
Kelly Tuttle 7:31
So I had a lot on my plate, and I did not have time to sit and relax. But I also don’t think that my thinking was clear. And I’d like to emphasize that. So if a caregiver or our friend sees this happen to a friend, you really should keep a close eye on them. Because they may not be thinking right, their brains not working right.
Kelly Tuttle 7:59
It’s, you know that it’s had an injury. So they’re not going to be making good decisions. Myself, I lost my self-awareness. So I wasn’t aware of my limitations. I kept trying to push myself. I ended up falling asleep at the wheel down the road because I was suffering from Neuro fatigue, which stroke survivors are very aware of.
Bill Gasiamis 8:26
Yeah down the road usually about months later.
Kelly Tuttle 8:31
Yeah, I think a couple Yeah, it was like two or three months later that around that period, I had fallen asleep at the wheel.
Bill Gasiamis 8:41
We’ll talk about that as well then. So you’re tough as nails, you’re Brazilian Jujitsu, you’re 3rd Dan black belt, martial artist. You’re, you know, you’re an alpha personality. I mean, nothing is getting in the way of you shaking this off and walking away and going back to business as normal.
Bill Gasiamis 9:07
It completely makes sense to me. And I get the stories, almost exactly. Identical story for somebody who’s had a stroke, you know, I’m gonna shake it off, I’ve got work to do, I’ve got appointments to get over that stuff to do. Everyone’s got stuff to do everyone’s busy. And they can’t possibly comprehend that this thing is something that they need to attend to the numb leg, or the dizziness, or the sinking feeling in the gut or, you know, these strange things that they’ve never experienced before.
Bill Gasiamis 9:38
They don’t have a reference structure to be able to go, Hey, this is familiar to me. I know what this is. I’m going to do something about it and you might have to be a nurse or you see the other end of it. You see people turn up to the hospital, but you have never been the person who’s becoming the patient.
What caused the traumatic brain injury (TBI)
Bill Gasiamis 10:02
You’re never seeing that part of the process. You’re just seeing the person on the other end of that process. So you’re making the wrong decisions, in hindsight, but the right decisions in your mind at the moment. How do you think you sustained the actual brain injury? Did the airbags go off? Did you hit your head anywhere?
Kelly Tuttle 10:24
Yes, the airbags went off. I had bruising on my forehead. So I knew my doctor could tell there had been an impact. And so you know, when I looked back and was researching brain injuries and how to recover, I realized I had the acceleration-deceleration type injury where the brain when you’re suddenly stopped, will slam against the front part of your skull and then bounce to the back and then maybe a couple more times.
Kelly Tuttle 11:05
But in my car accident, I had not only T-boned the person, but my car twisted, and I think I got a little bit of that torsion-type injury along with that. And so that, as you know, can cause mayhem in the brain. There, I did eventually down the road, I had a specialized MRI and I did notice it did account for diffuse axonal damage.
Kelly Tuttle 11:43
And that’s when the little connections between the brain cells and neurons are severed. And so that that did show up. And I just think kind of, you know, that’s what you would find on that type of injury. So people should be aware of if they have a fall, anything that sudden, you know, sudden stop, you steal it from an acceleration, deceleration quickly. And then any fall that there’s some twisting going on, is going to make recovery a little bit tougher.
Bill Gasiamis 12:23
axon damage, is that localized? Or is it spread over a large area? Do you are you able to sort of know, to what extent that damage has occurred?
Kelly Tuttle 12:35
Not me, I don’t know how to read MRIs. It was just read on the MRI report, and I imagine it is a generalized injury, as opposed to an ischemic stroke where it’s more localized.
Bill Gasiamis 12:53
Okay. So could be a lot more of the brain impacted than what might happen in a bank to the head, that is just direct the director to one location. So for example, if you just hit your head, on, on a window on a car windscreen in a slower collision and collision that wasn’t so dramatic, you might have just had localized damage. But in this case, you’ve not only hit your head forward, but your brain may have hit on the inside at the front of the skull.
Bill Gasiamis 13:31
But also at the back of the skull. And then the twisting also created an additional layer of the challenge of damage to the brain. So when you finally realized that things weren’t right, was that soon after your husband picked you up? How did you finally realize that this collision, I’m not shaking it off? It hasn’t been? What I thought, I’m not going to just walk away from this.
Intro 14:03
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. How long will it take to recover? Will I recover? What things should I avoid? In case I make matters worse, and doctors will explain things that, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 14:27
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called Seven Questions To Ask Your Doctor About Your Stroke.
Intro 14:46
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition. They’ll help you take a more active role in your recovery. Head to the website. Now, recoverafterstroke.com and download the guide. It’s free.
Kelly Tuttle 15:06
Um, it was the biggest thing that was a trigger was I went out to lunch with one of my nurse practitioner colleagues who was working in neurology. And she was curious about my recovery, and thank goodness. And she asked me how I was doing. And I mentioned that I had fallen asleep at the wheel. And she was like, what? You fell asleep at the wheel? And I was like, Yeah, I fell asleep at the wheel.
Kelly Tuttle 15:37
So now I have to take a nap, you know, halfway in between work and home. And good things. That’s okay. Well, first of all, who thinks it’s okay to slightly close your eyes and put your head back while you’re driving? I did that, you just don’t think clearly, you know? And so, fortunately, she said, that’s not okay.
Kelly Tuttle 16:05
She was very nice about it. But she’s basically like, that’s not okay. You need to get a head CT, I still haven’t had any head imaging at this time. You need to see a neurologist and you need to see a physical medicine rehab doctor, and she said, PMR, I was like, what’s PMR? And she’s like, Oh, it’s a physical medicine and rehab doctor, and I’m like, Oh, okay.
Kelly Tuttle 16:35
And it turns out, you know, I went to school and learned, they were for psychiatrists. And now they’re known as physical medicine, rehab doctors. And as you know, they specialize in injuries to the central nervous system in the brain and spine. So they’re the person you want to see, after a head injury or a stroke. For sure, rather than then a neurologist, people think, oh, I should see a neurologist.
Kelly Tuttle 17:05
Well, I’m a neurology nurse practitioner. And what I learned is that they take care of people with brain diseases like Parkinson’s, multiple sclerosis, and epilepsy, so they’re not going to be too much help for someone with a brain injury, or a stroke.
Kelly Tuttle 17:25
Because stroke is also like, seriously, the foundation of recovering and preventing a second stroke is a lifestyle, right? You gotta have the exercise gotta eat well, you got to have your numbers looking good. If you have diabetes, that needs to be controlled, if you have hypertension, that needs to be controlled, your cholesterol has to look good. You know, and that’s a lot of lifestyle stuff. And your primary care doctor, your regular physician is very good at helping you with that.
Common issues in seeing a neurologistBill Gasiamis 17:57
Okay, this is a really important thing that you’ve just said, because I have so many conversations with people who saw the neurologist, and they’re just perpetually frustrated with the fact that they don’t do anything. And they can continuously complain about the fact that I went to the neurologist, and the neurologist was useless. That can’t be useless. Neurologists know a lot of things about brands but what they are struggling to do is guide somebody on the path towards recovery, like what should I do? How should I do it, etc.
Bill Gasiamis 18:33
That’s the thing that they struggle with. Stroke survivors go there looking for answers thinking that this person will advise them on what might have caused the stroke. If it was an ischemic stroke that doesn’t seem to have a cause, for example, where the damage is what they can do to rehabilitate it.
Bill Gasiamis 18:53
If there’s no information like that then you just don’t seem to be able to do that. We’ve got through now almost, this is probably 298 episodes, and I still haven’t been able to help people with what to do next. If your neurologist can’t help you, so just so we can emphasize it. Stroke Survivors should be seeking out the assistance of a physical, what was it?
Physical Medicine Rehabilitative DoctorKelly Tuttle 19:23
Medicine Rehabilitative Doctor PMR is usually what you may hear their title being and they are really good stepping stones to getting you to the right care now. There are different strokes as you are well aware bill, there are people who can get discharged who are discharged to read have facilities because they need intensive care, which I always recommend, if you’re discharging doctors say, you should go to a rehab facility because the, the physical therapy, occupational therapist, speech therapy is so intense, it’s gonna make a difference in your recovery.
Kelly Tuttle 20:24
But if you’re one of those people who has a small stroke, then you will get discharged home. And, you know, if you have a stroke, that doesn’t affect, like, a side of your body, maybe it just affected your speech for a little bit. And now you’re having maybe some cognitive issues with like problem-solving or speaking, then outpatient, we should also see those specialists, like the speech therapists, occupational therapists, the physical therapist.
Kelly Tuttle 21:10
If you do have some mild issues, like some hand weakness, or some leg weakness, your physical therapist is going to help you with that, if you have balance issues, your neuro therapist is going to help you with that they’re amazing also. And don’t miss out on those therapies. They’re so important, and they’re so specific to what’s going on with your brain. So they’re wonderful professionals who have amazing input to provide for you and your family.
Bill Gasiamis 21:51
Yeah, lovely bits of advice there, we’ll make sure that people can go to the show notes and get the lowdown on that and find out if they have somebody near their area, or be able to look for the names and the titles of those people and then see whether or not they can go there. Go to their local Google and search for those types of services if that’s what they need.
Bill Gasiamis 22:19
So your husband has come to pick you up. We haven’t got to the stage where you’ve finally gone home. A couple of months later, a little while later, your amazing colleague says something’s not right. But in that time between the collision and your colleague going hang on a sec. This is not right. Did you go back to life as normal? Was life? Okay? Was there some signs in hindsight that things were not right other than the fatigue?
Kelly Tuttle 22:59
Ah, yes. So I went to work the next day. And my friend, one of my friends drove me. And when I got to a meeting, I was meeting with a large group of nurses. They all noticed that I wasn’t acting right or speaking correctly. We were gonna go take a break. And so I say, Hey, let’s go out and get some Star Track. And they’re like, What, and I was gonna get some Starbucks. And they, you know, we laughed it off, but I did get the you will see your doctor tomorrow.
Kelly Tuttle 23:41
Speech. And I did. My doctor diagnosed me with a concussion and took me off work for two weeks. And I thought, I got this feeling that I was supposed to do better in two weeks, and I can go back to life because remember, I was in I was biting at the bit to keep training for my black belt test. Yeah, and so I was so yeah, I went back to training, working at anything, you know, that I had on my plate at the time I was still trying to address and I found that I had difficulty doing Katas that I had been doing over and over again for 13 years prior.
Kelly Tuttle 24:34
And I tell my foot to move forward it would step back. I used to train for hours and I couldn’t even do a Kata for two minutes without being short of breath and having a massive headache. My husband was helping me train he called out a Kata and the name of the Kata. And I was too mediately do and I wasn’t, you know, remembering the moves or what to do, or I was mixing up the names of things I had been doing for over, you know, 10 years.
Bill’s Book: The Unexpected Way That Stroke Became The Best Thing That Happened
Bill Gasiamis 25:17
We’ll be back with my guest in a minute. But first, let me tell you about my new book called The Unexpected Way That Stroke Became The Best Thing That Happened. When you move past the triggering title, you can read a book, which is about the 10 tools for recovery and personal transformation after a stroke.
Bill Gasiamis 25:37
It tells the story of 10 stroke survivors and the steps that they took, that got them to the stage in their recovery, where from a personal growth perspective, stroke transformed into one of those life experiences that on reflection filled with many opportunities for growth and personal transformation.
Bill Gasiamis 25:56
In the book, there are chapters on nutrition, sleep, exercise, how to deal with the emotional side of stroke tips and tools for mental well-being, and much, much more. To find out more go to recoveryafterstroke.com/book. To grab a copy, just typed my name, Bill Gasiamis to the amazon.com search bar.
Kelly Tuttle 26:17
So those were some signs. I also had difficulty with my memory, I would review one of my patient’s charts in my office and then go to see my patient. By the time I saw my patient, I had forgotten everything I reviewed. And so I had to take notes and carry the paper with me to the room to remember what I had just read. So there is that memory issue. I also started wearing headphones, because the conversations outside my office that I normally was able to filter out I couldn’t handle anymore.
Kelly Tuttle dealing with sensory overload and other invisible challengesKelly Tuttle 27:06
And so I started wearing headphones just to kind of block that so I could concentrate. I had light sensitivity and I had dizziness and nausea. Whenever I would work on a computer or scroll up and down on my phone, and I couldn’t watch the TV, it was too bright, it was too loud and things moved too fast on it. So those were a few of the things that happened in the beginning.
Kelly Tuttle 27:48
And then I ended up failing my third-degree black belt, of course, you know. And I was upset about it. And my normal personality would be I’d be upset for a couple of weeks. And I’d say I’m gonna pick myself up, I’m gonna do this and I’m gonna even do it better. But I was so emotionally upset about it six weeks later. That is so not me. You know. And so I had a lot of emotional issues, and irritability and anger and stuff. And you know, when you look back Well, those are symptoms of a brain injury.
Bill Gasiamis 28:29
Everyone listening here is just relating with you. Everyone’s just holding their heart going oh my god, Kelly. We know what you went through. We get it what’s your self-talk like? Because you know, your two weeks at home, I’m going to be better than I go to work and then things are not good. And then I can’t get my next Dan level kind of over the line.
Bill Gasiamis 28:57
I can’t do all these things. What are you saying to yourself other than being emotionally upset six weeks after you’ve failed your black third Dan What are you saying to yourself? Are you looking at yourself in the mirror and going through with you or how do you go about life when everything is so flipped upside down and you’re not recognizing this version of yourself?
Kelly Tuttle 29:27
Well, first of all, I was I didn’t have that self-awareness. So I couldn’t even go this is not me. That took a long time to come back. And I And and it was one day I tried to go back to the dojo to train and I laughed upset just, you know, demoralized and I went home and I was like This is not me, something’s wrong. And I went back and I read all the paperwork that I had had from the concussion and stuff that I looked at to help get better.
Kelly Tuttle 30:11
And I realized, oh my gosh, I’m getting worse, not better. And so then I sat down with my husband, and I said, Yeah, I think I’m not better yet. And he goes, Yeah, you’re not, your brains not right. So I was like, why didn’t you say something to me this whole time? And he goes, I didn’t want to hurt your feelings.
Bill Gasiamis 30:51
What a legend.
Kelly Tuttle 30:53
Yes, yes. And so that’s when I, you know, started to that. And then shortly after that, I talked to my colleagues and said, hey, you need to get seen by specialists get the head scans, and so forth.
Bill Gasiamis 31:08
Your husband was afraid you were gonna put him in a headlock or something?
Kelly Tuttle 31:12
Probably.
Bill Gasiamis 31:17
Oh, my gosh, I’m gonna let you continue the conversation, your story in a minute, but your sensei is probably going, Who is this person? What is going on with her? Why is she no good all of a sudden, she was my perfect student, she, you know, she’s done everything, she’s a lethal weapon. And now she’s not thinking straight, she’s not able to achieve anything. Was your sensei giving you any feedback? Were the people in the dojo giving you any feedback?
Kelly Tuttle 31:51
You know, what I have thought about that. And I thought, you know, they had some students that were training along with me, and they had injuries, broken foot, and, and so forth. And they modified their tests for them. They were able to pass their tests after the modified test and accommodations for their injuries. But they didn’t do that for me.
Kelly Tuttle 32:22
And now looking back, knowing what I know, I realize it’s because my injury was invisible, and that they were not knowledgeable about concussions and brain injuries and how they can affect their students. So that’s a knowledge gap. That is out there. And I realized after the fact that they just didn’t know they had no idea. I mean, I didn’t have any idea. So I was having a hard time explaining. I just kept saying, Oh, my neck hurts. I have a headache.
Unknown dangers in contact sports like TBIBill Gasiamis 33:00
I’ve had a couple of guys on the podcast who are BJJ practitioners, and they both had a stroke because of a carotid artery, or dissection because of a choke. That particular injury seems to be common in the sport. However, people within the dojo don’t understand what choking somebody could do to the neck, or the blood vessels today, or down the track a few days down the track, there’s no awareness whatsoever.
Bill Gasiamis 33:38
It’s a big issue. So that’s why I asked, I was just curious. And I didn’t expect you to say that I of course, they were completely aware of what had happened, and they were onto it and all that kind of stuff they couldn’t possibly be they’re not medically trained at all. And they don’t understand what it looks like to have an invisible neurological condition unless they’ve had one.
Bill Gasiamis 34:02
And unless they spent so much time like you and me writing books about it, and being on podcasts and interviewing people and all that type of thing. So we’ll give them the benefit of the doubt will, will, will say look, that makes sense that they didn’t respond. Your husband also is in the same situation, you know, he’s just going along.
Bill Gasiamis 34:26
Life as per normal, thinks you’re a little bit off, doesn’t want to say anything. Because he’s not certain doesn’t want to upset you. But eventually, he says something. And then how does the next part of the conversation go? What happens after he says I didn’t want to want to hurt your feelings.
Kelly Tuttle 34:47
Like why did you tell me it’s like, Well, I kind of tried, and he did. He said, Hey, I don’t think you should continue training. I think you should take a break. I don’t think you should go and do your testing, but I didn’t hear it because I was just like, I want to meet this goal, I’m in the best condition fighting strength that I’m at, you know, because I’ve been training, I was, you know, trained 13 years, but I trained intensely the year before.
Kelly Tuttle 35:19
And I didn’t want to give that up. And, but he did try. And then the other thing was that I was having to sleep a lot. And I was sleeping like 1214 hours a day, and taking two-hour naps, you know, on the weekend, and then I go to work, come home, go to sleep, and then wake up, go to work the next day and do it all over again.
Kelly Tuttle 35:48
And so what happened was, all the childcare and the household stuff fell on him all of a sudden, and he, you know, was very overwhelmed. He’s just like, where’s my partner, you know, it took her away and replaced her with this person who is not so nice to get along with. So he’s also not thinking clearly because he’s just trying to be there for the kids and stay on top of the dinners and laundry and all that stuff, too. So it was a rough couple of years. In the first two years after my brain injury,
Bill Gasiamis 36:33
yeah. Did your husband at the time? Notice that it was all this stuff started after the collision? Was that dot kind of realized? She’s not been the same since that collision. Did that happen at some stage? Or was that an aha moment later on?
Kelly Tuttle 36:55
I think he noticed it right away. Yeah, cuz he was the one with a brain that was working.
Bill Gasiamis 37:04
Yeah. I know. I mean, like, it’s so relatable all the stuff that you say, because no matter because stroke survivors all have their version of a TBI. And we’re all sensitive to light. We’re all sensitive to sound. I was out at the most amazing place in Melbourne today, yesterday with my wife. It’s overlooking the river. It’s under some massive beautiful trees, it’s outside, there’s tables.
Bill Gasiamis 37:36
There’s a restaurant there. You know, it’s nice and thin. When I say nice and thin, you know, it’s maybe only about six meters deep, but it’s very, very long. And it’s on the most amazing riverbank. There are people everywhere, it’s a beautiful, sunny autumn day. And they’ve got music. On the above our heads in the in the trees, the speaker’s net, and There’s music everywhere.
Bill Gasiamis 38:06
And it’s chilled. But down below, there is a barge. And so the place is called Arbery. So it’s called Aubrey because it’s under a whole bunch of trees. However, just the, on the river, where the path is where the sidewalk is where people walk along the river, there’s a floating version of it, they call it bribery of float. And they are the same business but different venues.
Bill Gasiamis 38:34
And they’ve got different music playing on the float right on the barge. And it’s pumping over there. Everyone’s having a good time. And they’ve got music on this side. And I’m losing my mind. And Christine says, all of a sudden, she says, You these guys, they should just switch the music off from one of these venues because we can’t hear both of them correctly.
Bill Gasiamis 39:01
And just as soon as she says it. I’ve just gone. Oh my god. That’s why I’m losing my mind here. I can’t cope. It’s too loud. And on my left ear, I’m getting this sound on my radio, I’m getting this sound, and the mash of him is just driving me bananas. And I’m just not enjoying myself and I. And I said to her about 10 minutes later, our meal hadn’t come yet. So we’re still waiting to eat.
Bill Gasiamis 39:27
And I said to her, I can’t get what you said about the music. Now I’ve noticed that I can’t get it out of my mind. It’s driving me bananas. And we just sit in there. And she’s going oh my god, what sort of a date would this have been if we were meeting on a date I would have left you here. And I was acting all strange and being weird and I couldn’t sit down. My left-side deficits were playing up because it was a little bit warm. I was just I was just not I was like fidgeting. I couldn’t sit still I couldn’t do anything.
Bill Gasiamis 39:59
And I still look I don’t know what’s going on. Well, I know what’s going on. But coming back coping or can’t deal with all this, anyhow, the meal came, we ate, of course, her meal came first mine took another five minutes to come I ate after her. And then finally, when we got the meal done had to get out of there, we just got up and left. And I realized, and we were walking around the central business district in Melbourne.
Navigating neuro fatigue and noise cancellation technologyBill Gasiamis 40:24
It was a Saturday afternoon, and it was pumping those people everywhere, it was a beautiful day, and all the cafes were filled. Our business district is also very heavily residential. And we were, we had done a fair walk. So I said, so we were going to hit towards the car and I said to her I don’t think I can walk towards the car, I’m stuffed, let’s just go and find the closest spot to sit down and have a coffee.
Bill Gasiamis 40:24
And we sat down at this place, which is technically what we had been doing all day, just walking and sitting in places having a snack, a coffee, whatever. But I couldn’t get back to the car. And I said, well, let’s just go and sit somewhere we sat down. And I think we just sat there, we had one coffee, we dragged it out for about an hour as long as we could drag it out.
Bill Gasiamis 41:14
And then I kind of recharge my batteries. And then we walked to the car. And that’s me every day like, my day has to be strategic. I I’ve lost that ability to wake up in the morning, and just do all my things and not hit those walls that just turn up out of nowhere. And I’m 12 years, you know, 12 years out. So it’s a really interesting thing to observe how my day went yesterday was still a lovely day.
Bill Gasiamis 41:53
But my wife doesn’t see my deficits, rather, she doesn’t see my deficits either. And every once in a while, it catches her off guard because everything is normal. And I was freaking out because the music is different. She’s just going oh my god, you wait, what are we going to do? I’m like I don’t know we’ll get it. It’ll be fine. We’ll just get through it. So strange, though.
Kelly Tuttle 42:21
Yeah. So when I was researching for my book, what I learned is that a lot of cognitive fatigue, or neuro fatigue, that was neuro fatigue, what you’re having is related to the brain wanting to run efficiently. And so these researchers were looking, they were using MRI imaging. And then you know how, if you have a brand new car and it’s running, it runs efficiently.
Kelly Tuttle 42:50
And then if you compare it to an older car that wasn’t taken care of as maybe hasn’t had an oil lube and 50,000 miles or something you put the same amount of gas well the newer cars just going to use up less fuel to get to a to b whereas the older car the that has been taken care of uses up more fuel Well that’s the same thing with the brain, the brain likes to run efficiently when it has damages, broken connections, cell debris and needs to clean out.
Kelly Tuttle 43:27
If it’s spending energy on Neuroplasticity, building up those connections, then it has less energy for things like visual filters. That’s why the sounds of the light seem to be audio filters. Because it doesn’t have the energy to block that out like you and I were able to do before our brain injuries. And the other thing too is sometimes with a brain injury, the brain loses the ability to differentiate between sounds.
Kelly Tuttle 44:09
So you suffer from sound overload and it gives dual attention to all sounds from the music to the conversation you’re trying to hear to the baby crying across the restaurant and it’s just overwhelming whereas before your brain would be able to go want to listen to this conversation. We’re gonna dampen this background noise you don’t have that anymore.
Bill Gasiamis 44:36
I love how you described that it gives dual attention to both sounds.
Kelly Tuttle 44:44
Yes, and the way I survived that because I still have sound sensitivity is through noise-canceling technology. Yeah. And there their headphones and earbuds that you can put into your We’re cancel out that sound. And they’re so advanced, they can kit you can connect them to your smartphone and control the amount of sound coming in via the app.
Kelly Tuttle 45:15
And those have been lifesavers for me, with that device, I’m able to hear a conversation with a friend better in a love restaurant, or even on an airplane, they assist me in hearing conversations because it’s cutting back that you know, the engine noise.
Bill Gasiamis 45:36
Are they small in size, are they as big as the headphones that you’re wearing now?
Kelly Tuttle 45:41
You can get both, I do have some smaller ones, but I would love to pull them out. But then they’ll activate and get my fun times. But you could do the small ones and just slip those into your ears, you know what else you can do. If you are working in a loud environment and you need to focus, you can put on these earbuds in turn the noise canceling on.
Bill Gasiamis 46:43
So that’s all right.
Kelly Tuttle 46:45
My earbuds
Bill Gasiamis 46:47
They did do that they connected.
Kelly Tuttle 46:52
Yes. But let me see if I get my get my video back up. But you can wear the earbuds and the headphones on top. And this will increase the sound control around you and allow you to focus. Say, if you’re writing a report, and you’re in an open workspace or your student you’re studying, you know, in a study hall or outside instant noises are breaking your focus. These are great tools to save your life. And when you utilize them, you are allowing your brain to save energy to not have to spend on blocking out these external noises. And you’re able to use that energy instead to focus on what you need it to or the tasks that you’re working on.
Bill Gasiamis 47:51
I love what you’re saying there, I used to take headphones, like the ones that you’ve got on, I used to take them to work and just put them on without switching music or anything that was just to keep my head feeling a little less overstimulated. And then recently, I discovered there’s a brand of earplugs called loop earplugs.
Bill Gasiamis 48:16
I’m gonna have a link in the show notes that just the earplugs but they’re able to have three different settings and change the level of noise canceling that they do. And they’re designed so that you can go and play, listen to a concert, and have a certain level of cancellation.
Bill Gasiamis 48:37
And you can be in a crowd and you can be in all these places. So for anyone watching and listening, just go to the show notes and see those links. I think they’re cool because they’re little, they’re inconspicuous. They just look like you’ve got a normal Apple or whatever brand earpieces in. And that’s it. You’re good to go. I love it.
Kelly Tuttle 49:01
I have a set myself.
Bill Gasiamis 49:03
Yeah, that’s good. Hey, you wrote a book. What’s cool is that you and I, we’ve got a lot in common. It’s that, that it’s that even though you’ve got like a head, that’s a little bit messed up, you’re always about solving problems, you’re looking for solutions, you’re looking for ways to help other people and give people information and tools. And I’ve got this download on my website.
Bill Gasiamis 49:31
It’s called several questions to ask a doctor after your stroke. And it’s been around for ages. It might be a little bit out of date and might need a couple of updates. Nonetheless, it has questions that you can take, you can print off and you can take it to your doctor. And you can say, all right, when did the stroke happen? What does that part of the brain do? And so on and who else can I see what other doctors do I need to visit etc?
Bill Gasiamis 49:58
People contact me and let me know how life-changing having those seven questions, even though they might not all be the correct ones for them, because it starts a conversation that they never could start before and then that usually sits them down the trajectory of knowing to ask certain people certain questions.
The Book: After The Crash By Kelly Tuttle
Bill Gasiamis 50:24
And you’ve got a similar download on your website. We’ll talk about that in a little bit. But I do want to talk about the book After The Crash. Tell me a little bit about it. How did you get to the point of deciding that you should write a book about this situation, and what is the book, mentor accomplish?
Kelly Tuttle 50:46
So I didn’t come up with the idea on my own, I had another great friend recommend that I write the book. And so I just put it on the little to-do list and then five, at my fifth anniversary of my car crash, I decided to start writing the book. And the reason why I wanted to write the book was, my goal was to get back to work as soon as I could, because I was the single-income earner for my family, and I earned the health care benefits and so forth. And so I needed to get back to work.
Kelly Tuttle 51:21
And I wanted to get back to work. And I remember the first couple of weeks, like before, I was supposed to go back to work freaking out, like I don’t know, what I need to make my return to work successful. I don’t know how I’m gonna handle this, I don’t know how this is gonna go. And I had some great books on how to recover from a brain injury that I learned from but they weren’t niched down to returning to work what you need to return to work. So that was my goal, I wanted to fill that niche.
Kelly Tuttle 51:59
My book would focus on supporting you in returning to work or studying while your brain healed. And so it talks about brain injury symptoms, common brain injury symptoms, and the specialists who can help you with it. Because I also didn’t want to say, yeah, you can have dizziness after a brain injury, but not say, what to do next. Some books don’t say what to do next.
Kelly Tuttle 52:30
And I wanted to answer that question. And so I do have those answered in my book. And then I share all the strategies and compensatory tools that I had learned to support my successful return to work. And that’s the main part of the book. Then at the end of the book, I had five strategies to get back to life and to support my brain’s healing.
Kelly Tuttle 53:03
It talks about mindfulness, nutrition, sleep exercise, here in America, the American Disability Act, and we Family Medical Leave Act that helps protect your job when you take time off work to heal from an injury or a serious illness. And I also have ways to ask for accommodations for your disability from your employer, and then I talked about finances, which is important.
Kelly Tuttle 53:42
If your finances aren’t healthy, then you’re not going to feel healthy, or you’re going to have a harder time getting better if you’re stressed out about paying the bills. And then I talked about at the end, about letting go of the old things that you were in the past, before your injury, and how to embrace the new, the new you and your new brain.
Bill Gasiamis 54:08
That sounds amazing. Thought of things that a lot of other books have been thought of. And I think it’s going to be helpful for people to be able to access a book that has some information, again, to start thinking about solving problems that seem unsolvable. Especially when your brain is not working properly, and you’re trying to get through to the next stage.
Bill Gasiamis 54:30
This has been a great book for caregivers as well, family members, loved ones, partners, and all sorts of people will be able to benefit from that because if like you and I our partners are taking up the slack, then they might benefit from knowing which direction to hit. And that might make it easier for everybody, including family. So that’s cool. How long did it take you to write?
Kelly Tuttle 55:07
I started in 2020. It was published at the beginning of 2023. So I’d say about two and a half years to get it written. And I wrote it along with a self-publishing company. So they had writing coaches. And so, which is great, because I’m a nurse practitioner, I don’t know how to write. I didn’t know anything about marketing, or social media accounts, those kinds of things. And so they helped me out with that. And I think that helped with my brain healing, too, with all that additional learning.
Bill Gasiamis 55:51
Yeah, it does help for sure. I wrote my book took four years from concept to research to writing, it was the hardest thing I ever had to do. I mean, I don’t have my ability to process words and all that kind of stuff fatigues me, the usual stuff, you know, I’ve got to find ways to get through that while I’m in the zone in the writing zone, but then I get fatigued. It was a real challenge.
Bill Gasiamis 56:19
And I had a book coach as well because there was no way I was going to be able to do this somewhere, nobody would have said to me, how’s the book coming along? I would have said I, it’s not, you know, forget about it. I’m not doing it anymore. Yeah, I’m so glad I did it, though, your book has very, a few things that my book has in it. So three of those topics, nutrition, sleep, and exercise, are in my book as well.
Bill Gasiamis 56:45
And What’s cool is, that I wrote the book because the chapters were not chapters that I thought of, I’ve interviewed 10 stroke survivors, and they’ve told me that stroke was the best thing that happened to them. And without crying out without leading them down the path, to tell them why I said that. I got out of them, these 10 chapters. And then when I interviewed the next person, they had they tended to the same 10 things, and the next person, the same 10 things.
Bill Gasiamis 57:17
And what they were, they seem to be universal things that we all need to attend to, to start the healing journey and to sort of give it legs so to speak, so that you start to improve things marginally, on all these areas, and then they all add up. And then there’s a massive difference in improving. And I had this little bit of a aha moment, it was like, Well, okay, that’s what everyone needs to know about.
Bill Gasiamis 57:49
The only problem is that everyone else’s book says the same thing. Everyone has to go back and attend to all these things. And I thought, Oh, my God, I’ve just written another bloody book that everyone else has written the same book. But God’s sake, what’s the point of that? But what is cool is that it’s not the same book, it’s a completely different book like yours, your spin on nutrition, your spin on sleep, and your spin on exercise, will be completely different from mine, but they all attend to healing the brain, they all attend to making the brain stronger and better.
Bill Gasiamis 58:26
And that’s what’s cool about it is that it doesn’t matter where we come from those core 10 things that need to be attended to are universal, and getting different people’s perspectives on how to go about healing your brain. Even though they say the same, they have the same title, for example, at the beginning of the chapter, is important to get a lot of different versions of how to sleep at a lot of different versions that eat better the one so that you can find the one that works for you, and you can get the result that you need, right.
Bill Gasiamis 59:03
And I couldn’t get that result from reading somebody else’s book, for example, but I might get that result from you. And just picking up one thing out of a book that you didn’t know could be the game changer. It could be the one thing that then propels the recovery in the right direction. Now that it’s out, what’s the feedback been like? How do people respond to your book?
Kelly Tuttle 59:35
I’m very well. I’ve gotten several five-star reviews. And I’ve had some people invest a lot of time in to their reviews, and their reviews tell me that my book has reached the goal of my intention. That it’s a you know, they talk about how it’s a companion, because it understands what they’re going through.
Kelly Tuttle 1:00:05
And they talk about some of the things that I had put in my tools and strategies they hadn’t realized or thought about, and now are going to use or wish they had known back when they were dealing with whatever the issue was. They say that it’s easy to read.
Different learning curves especially after a TBIKelly Tuttle 1:00:27
And that was my goal, I didn’t want to talk a whole lot about my story, even though sharing your story is important. I wanted to get to the point, you needed to, if you have this, do this, and this, you know, if Yeah, I don’t want to waste anybody’s energy, their brain energy, you know, reading too much of a fluffy story, because I know reading time is limited when you have a brain injury.
Kelly Tuttle 1:00:55
And, that’s why my book is also on Audible, I read it for Audible because I know how difficult it is to read. I’m a big audible user myself and learned that I was able to learn information from listening to books. Before my brain injury, I was very much the person who had to read it.
Kelly Tuttle 1:01:18
I was not an audible, an auditory learner. However, after my head injury, I became an odd auditory learner. And so that was important to me to have both versions of the book available. Because, yeah, in the beginning, that was one of the things I did notice was my ability to read hours on in was diminished down to 5 minutes, 5-10 minutes early in my recovery.
Bill Gasiamis 1:01:47
I always struggled to read for hours on end, I think I had some kind of a, you know, I had a dislike of reading, not because I didn’t enjoy learning from reading, but because books used to put me to sleep literally. And I struggled at school, I struggled ever, I never read a book, I think the first book I read was in my 20s.
Bill Gasiamis 1:02:12
And when we had a book to read for English class, I would make sure the book had a movie attached to it. And we read, we were supposed to read the book, The Killing Fields when I was in school. And it was a book about the Holocaust that happened in Cambodia during the ’70s Khmer Rouge regime, right?
Bill Gasiamis 1:02:38
And I was like, Oh, my God, I’m not reading this book, there’s no chance and there happens to be a movie that came out and I went and read and watched the movie. And then I wrote my paper based on the movie. And I got high marks, and my friends were all annoyed and upset.
Bill Gasiamis 1:02:52
And I’m like, guys, like, it’s the same thing. Like, once the movie, it’s telling the story, reinterpreted you know, get over it, you guys read the book and took ages. I don’t know how long it took you to read the book, but I saw the movie in two hours. And, and that was it, I was done. And I knew from back then that I had a different way of grasping information than learning.
Bill Gasiamis 1:03:14
But of course, back then there wasn’t a lot of stuff available on Audible, there wasn’t an audible, you know, you had to buy cassette tapes, and CDs and all that type of stuff. And I remember the first massive amount of listening that I did, somebody told me to listen to the Tony Robbins cassette series, Tony Robbins has about 7 billion tapes that he made available in one of his programs, I think, Unleash the Power Within.
Bill Gasiamis 1:03:46
And man, I was able to put that in the car while I was driving to work and then just listen to that. And then flip the tape over and then go on and keep listening to that. And I got through his 30 or 40 cassette tapes, quicker than I ever would have got through, say 30 chapters of a book or 30 volumes of a book or something like that. And it was a game changer because information was now able to enter my mind the way that it served me. And I didn’t know that I had this other method of learning.
Bill Gasiamis 1:04:21
So for people who are listening, who want to read and can’t read a book, and perhaps might want to try listening, one of the things that I do now is I buy the book and the audible and I read while the person is narrating the book, and that’s an even better experience because there’s no I don’t have to get tired doing any of it.
Bill Gasiamis 1:04:50
My eyes are just scanning the words so I know what I’m up to. If I need to highlight something in my highlighter, and then I’m listening to the person tell the story it’s just two ways of joining the dots and embedding that information, a completely different experience to just reading or just listening. It’s amazing.
Kelly Tuttle 1:05:09
That is an amazing combo, I would never think to put those two together, I’m going to keep that I’m gonna steal that from you, and share it.
Bill Gasiamis 1:05:17
Yeah, give it a try, Kelly, because it’s just so gentle and easy to do. And you don’t have to think. Because the eyes and the ears are connecting the dots. And it’s just embedding it far better. So how, how thick is the book? Do you have a copy there? Can you hold it up to the camera? How many pages is
Kelly Tuttle 1:05:48
Is it not that many? Over 200
Bill Gasiamis 1:05:57
Yeah, perfect stroke survivors love that stuff. Yeah, brilliant. I love I’ve got the filter on all. I’ll make sure there’s There you go. Make sure there’s a copy of that on the show notes as well.
Kelly Tuttle 1:06:14
But it’s really Yeah, it’s really easy to read. The other thing too is at the end of each chapter, I have like a list of recaps. So if you forget or you just want to quickly look back on something, you can go to that list and it’ll remind you, and yeah, write in it, highlight it. Yeah, you don’t have to read it front to back. You can pick the chapter like I have. I think I have sound sensitivity. Just go straight to that. And get in learning about that.
The hardest thing about TBIBill Gasiamis 1:06:46
Yeah. Excellent. You know, with my stroke survivor guests, I asked them these three questions at the end of the podcast episode. So now I’m going to ask you, but it’s relevant. So what’s the hardest thing about traumatic brain injury for you?
Kelly Tuttle 1:07:06
Or me, it’s the fatigue. Yeah, the chronic fatigue, you go to sleep. And no matter how much sleep you get, you wake up. You don’t wake up refreshed. I remember waking up refreshed and bouncing out of bed. I don’t do that anymore. I haven’t since the car accident. And here I am eight years later and still don’t do that. So that is the hard part. Is living with fatigue.
What has TBI taught Kelly TuttleBill Gasiamis 1:07:37
What has TBI taught you?
Kelly Tuttle 1:07:42
Oh, wow. It has taught me to have patience. And it has made me think even more empathetic and compassionate and understanding of others around me. And it has made me more grounded in the present moment. And I spend a lot less time in the past and the future now.
Bill Gasiamis 1:08:15
Has it made you a better nurse?
Kelly Tuttle 1:08:18
Well, you know, before my head injury, I was a cardiology nurse practitioner, I help people with our hearts. After my head injury after two years of learning about the brain, I was able to beg and plead myself into a trainee position as a neurology nurse practitioner. And I do feel it has made me a better provider.
Kelly Tuttle 1:08:45
Because I’ve been there and done that I have the T-shirt. I can hear what my patients are saying and put words to what they’re not getting out. You know, and they’re like, oh, yeah, that’s what I meant. You know, so I’m able to take these big kind of general struggles and say, Oh, you’re having difficulty with hearings because you’re experiencing hearing overload, and then I explain it and they’re like, Yes, that’s it. And so yeah, I feel like I’m a better ambassador between the patient and the care they need.
Bill Gasiamis 1:09:27
Yeah, you’re a translator as well. You’re able to decipher what they mean and put it into words.
Kelly Tuttle 1:09:34
Yes.
A piece of advice from Kelly TuttleBill Gasiamis 1:09:37
I love that. I hate that you had to go through what you had to go through to get there. But I love that you can do that. Other people are listening, that have all had a traumatic brain injury, all my guests and they’ll be someone that very early stage of their recovery, and they get to hear from me and you who are you’re eight years out I’m 12 years out and they’re kind of like, oh my God, like, will I ever be like that? What would you like to tell people who are just starting their journey or even a few years in? What kind of advice information encouragement would you like to offer,
Kelly Tuttle 1:10:18
That there is hope that you will get better. The thing is, is that every brain injury is as different as our personalities. And every road to recovery, therefore, is going to be different. And some of those roads are going to be shorter, and some of them are going to be a long highway. And you just don’t know until you get there. What you need to do is just be in the moment that you’re at, and do the best you can to support your brain healing.
Kelly Tuttle 1:10:51
You will have to learn over time, how to push yourself to help your brain grow stronger, but not push it so hard that you end up what I call regressing in your recovery. And that’s when all your past symptoms are unmasked, and you’re exhausted and you’re in bed for days trying to recoup, get your energy back. So it’s a lot of push and pull. The recovery isn’t a linear line. It’s gonna be like a dance.
Bill Gasiamis 1:11:29
It sure is. Hey, Kelly, thank you so much for joining me on the podcast. I appreciate it.
Kelly Tuttle 1:11:37
Well, thank you for having me. I enjoyed our discussion.
Bill Gasiamis 1:11:41
Well, thanks again for joining us on today’s episode. I hope you enjoyed my conversation with Kelly Tuttle to get a copy of my book about stroke recovery, go to recoveryafterstroke.com/book. To learn more about my guests, including links to their social media, and to download a transcript of the entire interview, please go to recoveryafterstroke.com/episodes.
Bill Gasiamis 1:12:06
Thank you to all those people who have already left a review about the podcast on iTunes or Spotify, it means the world to me. And it makes a massive difference to how people who are looking for this type of content combine it. If you haven’t left a review and you would like to leave one.
Bill Gasiamis 1:12:26
You can do that by going to your Spotify, or your iTunes app, and going in leaving a five-star review and a few words about what the show means to you. If you’re watching on YouTube, comment below the video now this is starting to take off people are commenting, and we’re creating conversations on the different YouTube videos. So it’s great to see I love people who are interacting with my video and I also respond to all the messages.
Bill Gasiamis 1:12:54
Also, if you’re watching on YouTube, like the episode, and if you want to get notifications of future episodes, obviously subscribe to the show. Hit the notifications bell. If you are a stroke survivor with a story to share about your experience. Come and join me on the show. The interviews are not scripted, you do not have to plan for them.
Bill Gasiamis 1:13:14
All you need to do is be a stroke survivor who wants to share their story in the hope that it will help somebody else who’s going through something similar to you. If you have a commercial product that you would like to promote that is related to supporting stroke survivors.
Bill Gasiamis 1:13:31
Come and join me on a sponsored episode of the show. Just go to recoveryafterstroke.com/contact and fill out the form briefly explaining which category you belong to. And I will respond with more details about how we can connect via Zoom. Thank you once again for being here and listening. I appreciate you see you on the next episode.
Intro 1:13:54
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. The opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed all content on this website at any length blog, podcast, or video material controlled by this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill gassy armas.
Intro 1:14:24
The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice the information is general and may not be suitable for your personal injuries, circumstances, or health objectives. Do not use our content as a standalone resource to diagnose treat, cure, or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.
Intro 1:14:48
Never delay seeking advice or disregard the advice of a medical professional, your doctor, or your rehabilitation program based on our content. If you have any questions or concerns about your health or medical condition, please seek out guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be called 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.
Intro 1:15:13
Medical information changes constantly. While we aim to provide current quality information in our content, we did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency, or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with the links we provide however, third-party links from our website are followed at your own risk and we are not responsible for any information you find there.
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Understanding Cerebrovascular AccidentsIntroductionIn this comprehensive guide, we delve into the intricate details of cerebrovascular accidents (CVAs), commonly known as strokes. As a leading authority in healthcare, we provide you with expert insights into the causes, symptoms, diagnosis, treatment, and prevention of this critical medical condition.
What is a Cerebrovascular Accident?A cerebrovascular accident, or stroke, occurs when the blood supply to the brain is interrupted or reduced, leading to damage or death of brain cells. This disruption can be caused by a blockage in an artery (ischemic stroke) or the rupture of a blood vessel (hemorrhagic stroke).
Types of Strokes* Ischemic Stroke: This type of stroke occurs when a blood clot obstructs a blood vessel supplying blood to the brain. It accounts for approximately 87% of all strokes. * Hemorrhagic Stroke: This occurs when a weakened blood vessel ruptures and bleeds into the surrounding brain tissue.
Risk FactorsModifiable Risk Factors* Hypertension: High blood pressure significantly increases the risk of stroke. * Smoking: Tobacco use damages blood vessels and contributes to the formation of blood clots. * Obesity: Excess weight can lead to other risk factors such as diabetes and hypertension.
Non-Modifiable Risk Factors* Age: The risk of stroke increases with age, particularly after 55. * Family History: A family history of stroke or certain genetic conditions can elevate risk.
SymptomsThe symptoms of a stroke can vary depending on the type and severity but may include:
- Sudden weakness or numbness of the face, arm, or leg, typically on one side of the body.
- Difficulty speaking or understanding speech.
- Sudden confusion or trouble with vision.
DiagnosisPhysical Examination
A healthcare provider will conduct a thorough physical examination, assessing neurological function and vital signs.
Imaging Tests* CT Scan: This can quickly identify whether the stroke is ischemic or hemorrhagic. * MRI: Provides detailed images of the brain to detect any abnormalities.
TreatmentIschemic Stroke* Thrombolytic Therapy: Administering clot-busting drugs such as tissue plasminogen activator (tPA) can dissolve the clot and restore blood flow. * Mechanical Thrombectomy: In some cases, a catheter-based procedure may be performed to remove the clot.
Hemorrhagic Stroke* Surgery: Depending on the severity, surgical interventions such as clipping or coiling may be necessary to repair the ruptured blood vessel. * Medication: Medications to reduce blood pressure and prevent further bleeding may be prescribed.
RehabilitationRehabilitation plays a crucial role in helping stroke survivors regain independence and improve their quality of life. It may include physical therapy, occupational therapy, speech therapy, and counseling.
PreventionLifestyle Modifications
- Healthy Diet: Consuming a balanced diet rich in fruits, vegetables, and whole grains can help control blood pressure and cholesterol levels.
- Regular Exercise: Engaging in physical activity for at least 30 minutes most days of the week can lower stroke risk.
- Smoking Cessation: Quitting smoking reduces the risk of stroke and other cardiovascular diseases.
Medications* Anticoagulants: These medications help prevent blood clots from forming. * Antiplatelet Agents: Drugs such as aspirin can reduce the risk of clot formation.
ConclusionIn conclusion, understanding cerebrovascular accidents is paramount in preventing and managing this life-threatening condition. By recognizing the risk factors, symptoms, and treatment options, individuals can take proactive steps to safeguard their brain health and reduce the likelihood of experiencing a stroke.
Cerebrovascular Accident (CVA) Recovery: Full Interview with Jennifer HaleJenifer Hale experienced a cerebrovascular accident (CVA) on the day of her 60th birthday anniversary.
Highlights:
00:00 Introduction
01:58 Having a cerebrovascular accident on my 60th birthday
10:04 Dealing with sensory overload
13:15 Life before the cerebrovascular accident
19:40 Post-stroke deficits and improvements
30:39 Communication and attention span
42:57 The power of positivity
50:13 The hardest thing about the stroke
56:05 A message to other stroke survivors
Transcript:
Introduction
Bill Gasiamis 0:00
Hello, everybody, this is episode 298 my guest today is Jennifer Hale, who turned 60 years old on the day of her cerebral vascular accident also known as a CVA.
Bill Gasiamis 0:14
A CVA is described as a condition where a portion of the brain experiences a lack of blood flow, resulting in damage to brain tissue. This occurrence is typically instigated by either blood clots or ruptured blood vessels within the brain.
Bill Gasiamis 0:30
Symptoms associated with cerebrovascular accidents encompass sensations of dizziness, numbness, or weakness localized to one side of the body, and difficulties in speech and writing, or language comprehension.
Bill Gasiamis 0:45
Now, just before we get started with the interview, let me tell you a little bit about my book for a minute. It’s called the unexpected way that a stroke became the best thing that happened, and it lists 10 tools for recovery and personal transformation.
Bill Gasiamis 1:00
It also tells the story of 10 stroke survivors and the steps they took that got them to the stage in their recovery, where from a personal growth perspective, stroke transformed into one of those life experiences that on reflection was filled with many opportunities for growth and personal transformation.
Bill Gasiamis 1:19
In the book, there are chapters on nutrition, sleep exercise, how to deal with the emotional side of stroke, tips and tools for mental well-being, and much, much more. To find out more go to recoveryafterstroke.com/book. Grab a copy from Amazon by typing in my name Bill Gasiamis into the search bar. Jennifer Hale, welcome to the podcast.
Jennifer Hale 1:43
Hi, how are you, Bill?
Bill Gasiamis 1:46
I’m well thank you so much for being here. I appreciate it.
Jennifer Hale 1:51
I appreciate you having me.
Bill Gasiamis 1:54
Tell me a little bit about what happened to you.
Having a cerebrovascular accident on 60th birthdayJennifer Hale 1:58
Okay, um It happened on March the sixth, which was my 60th birthday. I was fine. You know, I was getting birthday calls that morning. By 10 o’clock, my daughter rushed me to emergency because I couldn’t keep my balance, and I was dizzy, and my face kept on slacking.
Jennifer Hale 2:32
But I didn’t think anything serious until we got there, of course. So I ended up having I can’t pronounce it. It was a small blood clot in the left side of my brain. it starts with an I can’t pronounce it.
Bill Gasiamis 2:53
Acute ischemic CVA is what you’ve written here.
Jennifer Hale 2:59
Yes. That’s what it was.
Bill Gasiamis 3:05
It was your 60th birthday. Now, it’s March right now. So how many years ago was that?
Jennifer Hale 3:13
That was the last year 2023, so I’ll be 61 in five more days. Yeah. And this is a kickoff celebration for me.
Bill Gasiamis 3:27
Okay. Are you somebody who has a thing with anniversaries some stroke survivors who, when the anniversary of the stroke is coming up, start to get nervous or start to think about it negatively?
Bill Gasiamis 3:47
But there are a lot of stroke survivors who don’t have a problem with anniversaries at all. They don’t believe that the anniversary means anything other than to mark 12 months. How do you feel about the anniversary that’s coming up? Because it’s supposed to be a celebration because it’s your birthday.
Jennifer Hale 4:05
Yes, it was all sweet. Last year I had maybe six to 10 doctors in the room. Watching me, see what I was doing. And every time they say what’s your name? I tell them my name, what’s your birthday? March 6 1963 and they look. Oh no, that’s today.
Jennifer Hale 4:28
I said no, today’s my birthday we’re gonna celebrate. Just wish me a happy birthday. And I’ll still celebrate. I didn’t feel like I guess to make a long story short, I didn’t want the pity party. I didn’t want anybody feeling sorry for me because I wasn’t feeling sorry for myself.
Jennifer Hale 4:51
I didn’t want anybody. Just say happy birthday, join my party. If you didn’t want to stay you’re welcome to leave but we’re not having a pity party. I still feel that way.
Bill Gasiamis 5:07
Fantastic. It’s a great way to think about it and to go about how to deal with something serious that’s happening on a particular date doesn’t matter which day it is. Whether it was your birthday or not, really does it?
Jennifer Hale 5:20
No, it doesn’t. And then, you know, by being the 60th, that’s a milestone. So I said, I will celebrate and just be breathing still on my 60th birthday. I didn’t have sunrise at 3 63 and sundown at 3 6 2023. No. I’m still here.
Bill Gasiamis 5:52
The way I see it, was 37, when all of the stuff that happened to me happened. And I’m just glad that I’m getting to 50. This year is going to be my 50th. And it’s cool. It’s cool to be here.
Bill Gasiamis 6:09
Because 30 years earlier, I don’t know if I would have got there. That’s the thing. It’s a real gift to have another 13 years. I’m not sure how many more I have. But these 13 have been lovely to have. Some great things have happened, even though there have been some terrible things happened in life just as in everyone’s life. It’s been good to be around.
Jennifer Hale 6:37
Yes well, I appreciate you still being here. Because when I got home, my daughter gave me your information, to get a little bit more of what’s going on with me. So I’ve been watching you for over a year now. And every episode that I catch is just so inspiring. So I’m glad you’re still here too.
Bill Gasiamis 7:06
That’s awesome. That’s lovely. I appreciate that. Your daughter and was that your son that we were chatting with earlier?
Jennifer Hale 7:14
My son-in-law.
Bill Gasiamis 7:18
Tell me about your daughter and your family. How big is the family? Who’s around? What was that like?
Jennifer Hale 7:27
Well, I’m living with my oldest daughter and my son-in-law. And I have three grandchildren here, but I’m a grandmother of six grandchildren. And I have three kids, two girls, and a boy. And they are all in their 40s.
Jennifer Hale 7:47
So has this been a learning experience for the whole family? But I try to keep them informed on whatever I learn about myself, I try to inform them because they’re not used to me in this way.
Jennifer Hale 8:04
But I tell them, this is the new me. And we all just have to adapt to it because I’m surprised just like you. So I’ll just keep everybody informed. Even the kids keeping them informed of what’s going on with me. Yeah, so we’re just in pretty good.
Bill Gasiamis 8:28
And your children? Are they all living near you, the others? I know you’re living with your daughter, but are the others living near you?
Jennifer Hale 8:36
I have a daughter in South Carolina, I have a son in North Carolina. And we’re in Alabama.
Bill Gasiamis 8:46
Everyone’s all over the place. That’s okay. Do you guys get to meet up and catch up and have family events at Christmas or the big holidays?
Intro 9:01
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be. You’re likely to have a lot of questions going through your mind. How long will it take to recover? Will I recover? What things should I avoid? In case I make matters worse?
Intro 9:18
Doctors will explain things. But, if you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you.
Intro 9:40
It’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition. They’ll help you take a more active role in your recovery. Head to the website now, recoveryafterstroke.com, and download the guide, it’s free.
Dealing with sensory overload after the Cerebrovascular AccidentJennifer Hale 10:04
Well, this year, I kind of opted out of everything because I couldn’t, I’m still sensitive to noise and crowds, and only can take so much light, then I have to have enough light, like, certain times of the day, I need more light then when I’m kind of relaxing, I don’t need that much light.
Jennifer Hale 10:31
But it just depends on my body. So I just follow whatever my body says, and do I respect my body? So I didn’t have any celebrations, which was okay, because I needed to rest.
Bill Gasiamis 10:45
Yeah, I remember opting out of a lot of social events as well. And then, at some stage, feeling like I was missing out, so I would go along for as long as I could. And then sometimes sleep on the bed or the couch. And sometimes just leave early, just go to that place and set the expectation that we’re going to come for a few hours, we’re going to see everybody, and then we’re going to leave and get home early.
Bill Gasiamis 11:13
And that started to get better. After two years, after three years, after four years, everything started to settle down. And I was able to be at an event for as long as I felt like it or as long as I wanted. And fatigue wasn’t the thing that was causing me to not want to be able to go home.
Bill Gasiamis 11:32
And of course, noise sensitivity was an issue. And all the overstimulation from other people’s laughing and chatting and having a great time. That was all a bit too much. And I think it’s the wise decision to say, Hey, you guys have a good time. But I’m gonna rest I’m gonna sit this one out. And then I might see you at the next one.
Jennifer Hale 11:57
Yeah, I saw my grandson, he was six at the time, and he was playing football during the summer. And his sisters were the cheerleaders in their seven, eight, ten. And I missed the whole game, except the last one, I forced myself to go.
Jennifer Hale 12:19
So I couldn’t be sad I went to one. But I had to put earplugs in my ear. And at the time, and get on a cane. And the whole night, when he got to watch I had to go, but I did get to see one of their games.
Bill Gasiamis 12:39
It sounds like it was worth the struggle worth the effort. Yeah, the children would love to have you there. Everyone would have loved to see you out and about. And the good thing about it is you took some precautions, you put the earplugs in, and then you used your cane you did whatever you had to do to get there. And then when it was enough, it was enough.
Jennifer Hale 13:06
It was enough. Yeah, come home. Put the cane to the side and lay down.
Life before the cerebrovascular accidentBill Gasiamis 13:15
And rest. Were you actively employed when you had your stroke? What were you doing on a day-to-day basis?
Jennifer Hale 13:25
At the time, I was working a part-time job. Going to school full-time online. I was four times, which I still am. I was blessed enough with instructors. Let me they extended my time when I was in rehab to do my work online. And so when they did that, on my left side is my side that went out.
Jennifer Hale 13:57
So I just have my right side. And I was just doing what I could until and I made my dates. And I made my scores my points. And I’m back in school. Back in school now. Last year had a break. Summer break. And I just recently started back eight weeks ago.
Bill Gasiamis 14:22
What are you studying?
Jennifer Hale 14:23
I’m studying Christian counseling.
Bill Gasiamis 14:30
Wow. So how much longer have you got until that’s complete?
Jennifer Hale 14:36
Oh, wow. I just started when all this happened. So it’ll be a while. Maybe another three and a half years? If not four because I’m going part-time now. I’m not doing full-time.
Bill Gasiamis 14:55
Yep. And will that allow you to do what when you’re qualified, what is the hope? What kind of role will you be able to participate in?
Jennifer Hale 15:06
I can, counsel in church, you know, or I can have my place or office in counsel. You know, my goal, what I really would like to do is counsel children and be a part of the younger kids, and growing up and helping them through their decisions and all that kind of stuff. But yeah, I can counsel at a time when I get done.
Bill Gasiamis 15:45
Are you doing Christian counseling? Because you were very active in your local church?
Jennifer Hale 15:53
Well, the church that I attend now is my daughter’s last church. I just got in. I’m not involved still. Once again, it’s hyper, and before I decided on Christian counseling years ago, I used to be very active in a church. And I used to do counseling in the church, but it wasn’t what I expected.
Jennifer Hale 16:24
How can I explain, it was more. It wasn’t enough for me, it wasn’t enough. I didn’t feel like it was a warding enough to the people I was trying to help. So I wanted to get more information on how to use the skills to help people instead of just letting a person talk, talk to talk, and never getting to a solution. So I wanted to learn the skills and what to use and what to say, to help a person get to the bottom of the situation. Yeah, I don’t know if that makes sense.
Bill Gasiamis 17:07
It sounds like you’re doing your best to help people, you felt like perhaps you could help them but more and better, and you decided to get qualified in the particular field so that you could offer a better thinking about the people you are helping you want it to make sure that you can support them to get an outcome rather than just a tendon and, and perhaps not get to an endpoint.
Jennifer Hale 17:37
Right, exactly. That’s perfectly the endpoint. Because we can go around the same circle and never get to the bottom of it. And that’s, that’s not my goal. I wanted to make sure I was helping somebody.
Bill Gasiamis 17:51
So what happened at the time of the stroke, you experienced the symptoms, and you went to the hospital? Did they check you out? How long did you stay in hospital? And then how long were you in rehabilitation?
Jennifer Hale 18:11
I stayed in the hospital, I think, I want to say 10 days, if I remember straight, and I had a little bit of rehab there. They walked me around. And then I went to rehab. And I was in inpatient rehab for almost three months, two months after.
Jennifer Hale 18:40
Then I was on outpatient, until another month or two, and then insurance, no more. So, that didn’t stop me what I did was I would get on YouTube and look for exercises to help and I would exercise and then I went to the why and went the pool and worked on my legs and my arms and anything that will give me movement I get it.
Jennifer Hale 19:12
To this day. I don’t have insurance at this time because was between moving from one state to another and still trying to get my disability to get this. It’s kind of hard to get it off my neck. So the only thing I do now is just make sure I eat right, exercise, and do everything I can to keep my body in shape.
Post cerebrovascular accident deficits and improvementsBill Gasiamis 19:41
They are good things to do. So you were in therapy until the insurance ran out. And then you went home when you went home. What did you go home with what kind of challenges were you experiencing?
Jennifer Hale 19:59
My left leg I would. So I had to tell my brain to pick up my leg when I was walking I named my left arm I named it baby. So baby was pinned to my side, she was not moving at all. And all the time she would move is when I yawn, and she would go straight up but then she’d come down.
Jennifer Hale 20:28
But after the rehab, I didn’t have any movement. My movement didn’t start until I joined the why starts when we’re not swimming, or moving in the pool. And then one day, my daughter was getting ready to go to work. Now I already knew I could lift my arm and I told her by and she was like, oh my God, it’s moving so it’s almost 90% now I just can’t move it on top of my head.
Jennifer Hale 21:01
My leg is strong. It doesn’t drag wherever now, I didn’t have to tell it. You know? Yeah, get going. And the only thing now, of course, is this one. I can’t pronounce it, you know, when you try to talk is a fish. phage. And now and then I lose track of thinking, you know, I can’t think too fast. Because everything just stops. Fifth, the outside appearance just coming along pretty well. But now it’s more inside.
Bill Gasiamis 21:46
The healing on the inside of the brain.
Jennifer Hale 21:49
The brain and my eyes.
Bill Gasiamis 21:53
How are your eyes affected?
Jennifer Hale 21:56
Blurry it’s like dusty. And they said the blood clot was small and wasn’t enough for them to operate was small. So okay. But when I was in the rehab, inpatient rehab, I watched everybody that was in there with me. And I thank God that it could have been worse. What is just amazing on what a stroke can do to a body. It’s just amazing. And you see the different effects of it?
Bill Gasiamis 22:42
Would you say you’re different? You say that? Your speech? If you think too quickly, everything stops. So is your speech affected by that as well? Are you talking at a slower pace than perhaps you would have before?
Jennifer Hale 22:58
Yes, yes, real slow. Sometimes I have to think about what I’m gonna say before I say else it just sounds like I’m reading.
Bill Gasiamis 23:11
So now the thinking has to happen. And then once you’ve gathered the thought, you can say it before you just used to talk. And he used to come out and there was no thinking about what you had to say.
Jennifer Hale 23:26
I had to think about what I was saying now.
Bill Gasiamis 23:31
Why do you believe that the therapy didn’t start for your left side and that you didn’t get much stronger while you were in rehab? And then you started to see improvements when you got home. Can you do you have a theory on that? Did you do something different when you came home?
Jennifer Hale 23:52
To be honest, I think the difference was once I moved to Alabama where I’m now they just completely health everything Spanish, and smoothies, and a lot of berries so the household is full of nothing but healthy snacks, and well healthy food period, and how you said turmeric.
Jennifer Hale 24:22
Turmeric,
Jennifer Hale 24:23
Turmeric. I think that that and walnuts did it. Does that that’s all I eat? All of a sudden seemed like everything just started. No relaxing. And then being in the swimming pool helped because my muscles weren’t filling in. So I can move and still have resistance and it wasn’t hurt.
Bill Gasiamis 24:58
I remember the swimming pool was really lovely to be in after the stroke, even though I couldn’t walk and move my left side either. Of course, I was supported by the therapists and with those flotation devices, so I was feeling safe being in there, but I was able to exert myself as much as possible and get that resistance from the water, and then also not be afraid that I was going to fall over and hurt myself.
Jennifer Hale 25:36
Right? Yeah, I think that was it. Because you can’t if you had three feet not going, you can’t go too far. It was good to have that resistance. That’s the part that I like, no, not moving around, and no nothing.
Bill Gasiamis 25:59
Was it difficult for the children to see you in the way that they saw you? How did they support you? And they all live in different places? And it sounds like you were living somewhere else at that time as well. Where were you living?
Jennifer Hale 26:16
I was living with my daughter in South Carolina. Well, let me back up because I know I saw, um, right before the pandemic 2019. I flew, and I stayed in California. But I flew to South Carolina to view my son and his birthday, and then everything shut down. So that’s what made me stay here. Because I couldn’t, I couldn’t go home. I said, Well, my kids and grandkids are here.
Jennifer Hale 26:49
So my eyes weren’t hanging around. So that’s how it truly happened. And then the daughter I was standing in South Carolina, I was living with her. And it was just a blessing because she worked the night shift. And she was asleep when I was going through the dizzy spells and on. And I tip I called her She didn’t ask her, and I texted her. And I said, Oh when I was just getting ready to take a nap.
Jennifer Hale 27:20
Don’t take a nap. Stay up. So I stayed up. My daughter ran up the stairs and she said, Mom, you do like you get ready to mirror looking at myself and she’s like, having a stroke. And I said, Oh, okay, and I was real calm. She said this go and I said, Okay, wait, let me let me call my hair. No, you don’t have time to comb your hair. You got to go. You don’t know who we’re gonna see when I get there. I gotta go. It’s my birthday. I gotta make sure I’m good. So she got me there. Thank you, Lord. Everything was okay.
Bill Gasiamis 28:06
And then your other two children were not near you. They get the news. How did they respond?
Jennifer Hale 28:13
They were at a hospital. My son at the time. He couldn’t make it. But he kept calling but my daughter. They came? Yeah, they were at the hospital. My sisters and fathers flew out from California. So I had a lot of support in the beginning.
Bill Gasiamis 28:35
You got one of those big families that when something goes wrong, everyone just turns up.
Jennifer Hale 28:42
At the rehab, they say you like a movie star around here? I said that’s my family they are shy about nothing.
Bill Gasiamis 28:58
It sounds like you’re the matriarch as well, it sounds like you’re the head of the family. And a lot of things happen. Because people look up to you and they respect you. And probably your attitude. It sounds like has always been your attitude. I don’t think that this is new for you this way, about solving problems and overcoming challenges. I don’t feel like you just started this has that always been you?
Jennifer Hale 29:23
It’s funny that you say that because I’m the oldest of eight and I’m okay, we’re so close in age that I never felt like I was the oldest because it was that close in age. I will always be there to support whatever they need or whatever they need from me. So and then yeah, they asked you a question.
Jennifer Hale 29:51
Negativity was never my thing. If you didn’t have anything positive to say as they used to say you can’t say anything nice. Don’t say anything at all. So yeah, it’s me, I believe there is too much in life to be disappointed about things. That’s not gonna matter.
Jennifer Hale 30:11
A minute from now, you know, if you can make the best of it, do it, you know if you can’t figure it out. But no, I never know, you know, I’m not gonna say I don’t have bad days, because I do. But I let it take sick, take its course with it, don’t settle it don’t settle in long enough for me to feel sorry for myself.
Communication and attention span are affected by cerebrovascular accidentBill Gasiamis 30:39
That’s a very good example, of aphasia. Was it worse before this particular interview, has it improved, what have you noticed, has changed with the way that you communicate now?
Jennifer Hale 30:56
It improved a whole lot. Because in the beginning, all this was over here. And a friend of mine told me he said, chew gum, just chew gum, and you’re gonna find that to eventually your side is going to kind of even out. And I did I used to shoot like, stick sticks out the sticks.
Jennifer Hale 31:23
And I still chew it, you know, but he was right. Eventually, it came. And I had exercises that they gave me that I still do. I say my ABCs. And when I read a book, I read out loud. So I, you know, the more I use it, the better it gets. But sometimes, I don’t like to hear myself say to me, I sound like a robot. So after a while, I just get quiet because I don’t like that part. And then we’re all ready for exercise some more, but when it’s much better, that’s your question.
Bill Gasiamis 32:08
So you hear yourself in your ears like a robot? Did you ever hear like a robot? Did you ever notice yourself? Being aware that you can hear yourself before? Does that make sense? Do you know when you’re talking? I’ve never actually paid attention to, the sound of my voice sometimes people will say you love the sound of your voice if you’re the kind of person who talks a lot and is chatting all the time.
Bill Gasiamis 32:41
And I’ve always said Yeah, I do like to send them my invoice. But I haven’t paid attention to it. Are you saying that what happens now is the sound of your voice comes into your awareness? And then as a result of that is and it does that because it sounds strange.
Jennifer Hale 33:00
Sounds strange. It sounds just like a yeah, just sounds strange. I can’t even explain it. Like
Bill Gasiamis 33:12
Like an electronic voice.
Jennifer Hale 33:15
Just like that.
Bill Gasiamis 33:18
And do other people’s voices sound like that to you? Or is it just your voice that sounds like that?
Jennifer Hale 33:26
Just my voice, with other people. You only can talk for so long as I have. I can’t talk take a break. If I’m around somebody who talks talk talk. Yeah, to take a break. And I never that bothered me before. Because, you know, communication is the key. But now I’m very in tune with conversations. And if it’s a conversation that I feel like it’s not meaningful or it’s not adaptive if I could say that, in other words, I don’t want to just hear you talk. I you know, it gotta be some some information to what we’re talking about.
Bill Gasiamis 34:30
There has to be a point to the conversation, not just your chin wagging.
Jennifer Hale 34:36
Oh, that’s good. Yeah.
Bill Gasiamis 34:39
That’s an Australian saying.
Jennifer Hale 34:42
Oh, what is it said again?
Bill Gasiamis 34:44
Chin wagging.
Jennifer Hale 34:46
Chin wagging. I’m gonna borrow? No, I’m not gonna borrow it and I’m gonna say it if you don’t mind.
Bill Gasiamis 34:55
You own it. So what we do is we can say something Unlike let’s go for a chinwag, that means let’s go for a talk. Let’s go for a bit of a talk. Let’s get it. And then this goes over here. You could, you could say something like, you know, he’s just having a chinwag. He is just talking, and he’s just getting things out.
Bill Gasiamis 35:17
He’s just saying stuff. You know, it’s just it’s just to describe what people are doing is that more than anything, they’re just moving the chin rather than having a deep and meaningful or important conversation. It’s just, it’s just a term that suggests there’s talking going on, but there might not be a lot of substance behind it. But that’s,
Jennifer Hale 35:40
yeah, yes. Okay, for a little while. And then after, wow, my brain just shuts down automatically, because I’m not receiving nothing to keep, keep it productive, you know,
Bill Gasiamis 35:54
to keep you stimulated and focused and try to work out what’s going on. And then it becomes it sounds like then it becomes just noise. And then that becomes tiring because I understand how noise can make the brain tired. Especially if it’s just for no purpose.
Jennifer Hale 36:16
Right. And there’s no Hartfield is that’s one of the things that when I realized that about myself, I caught a family meeting remark by its children hearing that, um, no, look, I’m not the same, you know, I’m not, you know, it used to be timely to talk to two and three in the morning just, you know, chinwag but no, we can’t do that anymore.
Jennifer Hale 36:45
And you have to make sure what you talk about is important or something that’s going to be worth listening to because my attention span shuts down real quickly. And I don’t want you to think I’m being rude when I’m not, I just have to listen to my head and it says enough is enough. I check out.
Bill Gasiamis 37:09
And you’ve got to save that energy for the important conversations, so you can have those and pay attention to them. And some of the other conversations, just take some of that battery energy from that space.
Jennifer Hale 37:24
Right. Right. Right, is on reserve, I’m putting it on reserve. And I noticed if I don’t talk all day, by the end of England. I have a lot. You can wear me out for a minute. But if you start in the morning, I’m gonna last.
Bill Gasiamis 37:49
You say it’s so well, that’s so true. That’s exactly what I experienced. I was never able to communicate it. I would just say, Look, I’m not interested in talking and people might take it the wrong way. Or, or, or just sound like I’m getting overwhelmed or I don’t want to hear about it. Or just don’t tell me I don’t want to know. Sounds like you have a better way of letting people know.
Jennifer Hale 38:16
I’m not in the business of trying to hurt people’s feelings. I never was, you know, because if it’s something about you, I don’t care about I don’t set myself up for the nonsense. So I try to be front. This is how it is. I’m not trying to hurt your feelings, but I gotta look after what my body’s telling me to do.
Bill Gasiamis 38:46
Your grandmother so the kids are around from time to time. What is it like when they’re around? Because they’re full of energy and they want your attention and they want to play and they want to be loud. What’s that like?
Jennifer Hale 39:00
In the beginning, as I said, I named my arms baby. It took a while for them to comprehend what was going on because, to be honest, all my grandkids my oldest granddaughter she calls me Granny the one under her calls me Ma. And the three around here call me Grandma Peachy so they all have their little name for their personality and my personality.
Jennifer Hale 39:35
So they used to see grandma peachy, you know, she always doing something, you know, but when they saw I couldn’t I so and I used to make T-shirts, printed T-shirts and I will get them involved. Crafting was my thing. When they said I couldn’t do it. They were Oh No Grandma Peachy. They will be so and they will all come and rub my arm or relate it and who went to the store?
Jennifer Hale 40:09
They will take my hand all three of them will grab one grab a wrist one or grab the elbow one regret and they all walked me across the street. It was so attentive in the beginning when they sang Grandma Peachy Can Move a little bit Oh, it was over.
Jennifer Hale 40:30
Okay, you guys still gotta calm down not fully back but they do have to understand you know, when I’m in my room you know that’s my rest time and they knock on the door to make sure I’m okay then when I come out to I laugh and talk with them but when it’s enough they understand they don’t feel bad it just okay grandma peachy will see you whenever you come back out. They’re very understanding.
Bill Gasiamis 41:08
Children are very smart and they understand they get things a lot more quickly than some adults will ever. It’s amazing how children can respond and know where the boundaries are. Know when you need attention and know when it’s okay to leave you alone. That just really gets it.
Jennifer Hale 41:31
Right? They do get it they do. You know, and I didn’t want them to feel sorry for me. I wanted them to still know that. I’m still your grandmother. I’m gonna do all I can with the shirt that I have, but you can’t wear me out. They understand they give me my rest.
Bill Gasiamis 41:55
Why did you choose to name your hand or your arm Baby?
Jennifer Hale 41:58
You know what? I just say Oh, baby you’ll be okay. And I guess it was just the nurturing part that came out. No, it was just lying in the hospital bed. And after the nurses do what they do, put my arm on a pill. And I looked at it because I couldn’t it wouldn’t move. I think the Lord I have feelings though.
Jennifer Hale 42:30
It was some people who did have to fill in it still couldn’t move. I think the more I have feelings because at least I can feel the sensation, you know. And I will say babies all right, you won’t be okay babies. So I don’t know if that was just my way of telling my arm it was gonna be okay. Because the baby’s still going strong.
The power of positivityBill Gasiamis 42:57
Yeah, I do love that. It reminds me of a story when I was in therapy in rehabilitation, inpatient rehab, just after my brain surgery. And I was trying to get my left side to work in and there was a gentleman there who had a problem. I think it was on his left side. It doesn’t matter that one of his arms wasn’t working properly. And at the beginning, he was calling his arm a bastard
Bill Gasiamis 43:23
Wow, what a reaction. That was my reaction. I couldn’t believe it and I had a conversation with him about that. And the reason he was calling it a bastard was because it wouldn’t work. It wouldn’t do what he wanted it to do. And then I said to him if your arm did work, if it did what you wanted to do, what would you call it? And he said I would call him my friend. I said that’s interesting.
Jennifer Hale 43:58
So contingent if I’m saying it, right. If you work for me, I’m gonna call you my friend. If you don’t work for me, then you that other things.
Bill Gasiamis 44:19
So the thing was, it was conditional. It had to be doing something to be his friend. So what I said to him was, what if you just call it your friend now? Pretend it to your friend already? And see what happens. And you wouldn’t believe it. As soon as you change the word that he was using to describe his hand. His hand worked and moved and it did that task. It happened in the space of less than a second. He changed the word. He looked at his hand. Okay. A friend moved, and it moved the way that he wanted to.
Jennifer Hale 45:04
See, yeah, that negativity, I tell you, none of it, if it’s not positive I don’t want any part of it, and that showed him how powerful he is, you know, his mind and his arm. That was some good advice because I don’t know if I could have sat around and listened to him talking to his arm like that.
Bill Gasiamis 45:31
That was so interesting to hear. And then I had another friend who’s had a stroke. And she again, I think it was, it doesn’t matter which side one of her arms was not working the way that it was before the stroke. And the therapist that came to her house, called it the bad arm. Now let’s help your bad arm, and my friend said, don’t speak about my arm like that.
Bill Gasiamis 46:00
It’s not my bed, we’ll have to find another name for you to use, do not use the bed. And that particular therapist got a little bit annoyed and upset. But my friend wasn’t going to have it she was Clare Coffield, and she wasn’t going to have it, she wasn’t going to put up with it.
Bill Gasiamis 46:18
And she gave that therapist, a nice little lesson in how to speak about this sort of situation. And Clare already had a name for her. And it wasn’t I can’t remember what it was. But it wasn’t the bad arm it was in the positive it was named something in the positive.
Bill Gasiamis 46:45
So it is a very interesting thing for me to hear that you would instinctively which is lovely. It says a lot about you that you would instinctively name your arm Baby and then that’s an example of how we can get in our way for recovery without realizing it. Some people, don’t realize that the unconscious thoughts or the words that they have become used to using how they’re working against them.
Jennifer Hale 47:21
Right, right. Even in rehab, they were calling my arm. How’s Baby today? Oh, Baby’s fine. Oh, that’s good. Everybody knew to call my arm Baby. And it kind of lifted to know that Baby sounded so refreshing or sensitive or you know, just, you know, we’re going to take care of baby today. Thank you, you know, so yeah.
Jennifer Hale 47:52
And you know, and it’s just amazing, where, what I’ve noticed, since I’ve been going through this, how sometimes people are not sensitive to your situation, especially when you think they should be if you’re a therapist seem like you’d be more sensitive. But they get so I guess now to the fact that they just, oh, is this a job?
Jennifer Hale 48:22
And sometimes you have to remind them that I’m not just your job, you know, we’re here to be a team. But I’m not here, you know, I know you can pay to help me. Because without mentioning any facilities in Atlanta, in the beginning, it was kind of tough for me, because I did nursing for over 20-something years. That’s how I raised my children. So I’ve been in the medical field.
Jennifer Hale 48:57
So I’ve always respected people. I was a CNA. So as they say, I was hands-on, you know, hands-on, but I respect them I honor them you know, because that is so hard when you’re a different person than what you used to be in, you know, so when this happened to me, and some of the nurses would come in and just, oh, no, slow down. You’re not just gonna toss me around like that, you know?
Jennifer Hale 49:36
And then they’d be shocked because what I noticed was, they think because you had a stroke, you don’t have this. So they would just say what they wanted to say. And then when I said oh, no, I understand everything they will be shocked.
Jennifer Hale 49:52
No, so they insist. They won’t be sensitive anymore. They just want to Oh, she had a stroke. She’ll be all right. No, I’m not gonna be all right. I understand everything you tell me. Well, why don’t you just be nice across the board?
The hardest thing about the cerebrovascular accidentBill Gasiamis 50:14
It’s a far better approach. I agree. What’s the hardest thing about stroke for you?
Jennifer Hale 50:28
The hardest thing is watching other people watch me. Like, if that makes sense. went before this happened, you know, I felt like I was part of the team, you know, you could walk into a store, nobody. But now I noticed people kind of lay the look and turn their hair or they, they’ll try to speed up in front of you. So they don’t have to look at you. And like I said, In the beginning, my whole site was over here, when I close my mouth, in the halfway decent.
Jennifer Hale 51:09
But when I open it, people jump because they don’t expect to see the slurred. So when I noticed that kind of stuff, I just kind of chuckled to myself. So for me, I respect the fact that I am a new me. And eventually, I’ll be back which is going to take time. But for others, it hurts my feelings to watch you watch me. Because you should. I’m still a person.
Jennifer Hale 51:41
You know, I’m still part of this community. Nothing has changed, you know, you seldom see people say, How are you doing? Do you feel it? Okay. They turn to here like they don’t, they don’t see you come in. So it’s almost like they want to exclude you away from you. But I still make them known. I’m still here. Hi, how are you?
Bill Gasiamis 52:12
People don’t know. The hardest part. Yeah, people don’t know how to be around unwell people. They don’t. They don’t know what to say. They don’t know if they’re afraid they’ll say the wrong thing. Or it scares them to see somebody that’s a similar age to them. That’s unwell. Because oh my gosh, that could be me.
Bill Gasiamis 52:34
I’d rather not think about it. There are a lot of things that go on in the mind of somebody who’s, we’ll call them normal. Not that. Not that that means anything, but we’ll just call them not somebody who hasn’t had a stroke, perhaps. It is very interesting. What is the thing that stroke has taught you?
Jennifer Hale 52:59
To be patient with me? To be patient. There’s no sense of rushing anything anymore. Even when I come back to 110% I’m gonna still be patient with myself. Because I watch once again, everybody hustling bustling moving fast going, like what? Why am I moving so fast? You know, work? patience with myself? Yeah.
Bill Gasiamis 53:32
Were you not so patient with yourself? Previously?
Jennifer Hale 53:39
No, I don’t think I’m the one that will put myself on the back burner. And that everybody else. So now I’m learning that I have to put myself on the front burner.
Bill Gasiamis 53:55
That’s a good lesson to learn because some people give, give, give, give nothing left. And then that’s not good for anybody because then you get burnt out, or you can’t give and be You can’t give to yourself and feel good about yourself. And there’s no point burning out and making it about other people. It has to be at some point about you. And now especially, it has to be about you first.
Bill Gasiamis 54:27
Because if it’s about you, and you get better, and you heal, and you get back to being the type of person in the family that can handle the noise they can handle the events that can if you can get back to that then you’re a you know, your job role in the family. Improves, so to speak, we’ll call it improves. I don’t know what the word is but you go back to to your role, and that benefits, everybody.
Bill Gasiamis 55:04
Whereas if you don’t go back to your role, because you haven’t been able to make it about you and focus on yourself for the first time in your life, then that’s not good. That’s not good and shows you why you might get back into your family a little different than you were, you might speak slower. Or you might still walk at 95% instead of 100. But still, it’s better to have you back with these little deficits than to have you wiped out and on the sidelines and always right, not around.
Jennifer Hale 55:42
Right, right. Yeah, that’s true. Yeah. I’ve learned a lot through this journey.
Bill Gasiamis 55:52
What would you say to somebody listening to this, who’s just started their journey as well? Well, maybe they’re a few years in. What advice would you give?
A message to other cerebrovascular accident survivorsJennifer Hale 56:01
Don’t give up on yourself. Don’t give up. Every time you wake up is another day to make a better way. I try to learn something different every day. Give yourself a goal, I might not be able to get this cup up today. But tomorrow, if I could just wrap my fingers around it. Just make a goal for yourself and work at it because it happened. The baby was picked to my left leg. I couldn’t do anything with Baby. Now baby can wave at you. So give yourself time and hope that it happens. Don’t give up on yourself.
Bill Gasiamis 56:58
Beautiful words. I appreciate you reaching out and joining me on the podcast. Thank you so much.
Jennifer Hale 57:06
Thank you for reaching out to me. As I said, this is my birthday kickoff celebration. I’m glad I did it with you first.
Bill Gasiamis 57:15
Happy birthday for five days this interview will go out in a bit longer than five days. But it’ll be your birthday celebration interview.
Jennifer Hale 57:31
Yes, yes. Thank you so much, Bill. Thank you.
Bill Gasiamis 57:39
Well, thank you for joining us on today’s episode. I hope you enjoyed my chinwag with Jennifer. To get a copy of my book just go to recoveryafterstroke.com. To learn more about my guests, including links to this social media, and to download a transcript of the entire interview, go to recoveryafterstroke.com/episodes.
Bill Gasiamis 58:01
A big big thank you goes to all those people who have already left a review for the show on Spotify or iTunes. It means the world to me, that podcasts live and thrive because of reviews. When you leave a review, you’re helping others in need of this type of content to find it a little bit easier to write your review and to leave a few words about what the show means to you.
Bill Gasiamis 58:25
Just do that by going to your Spotify or iTunes app and leaving a few comments and a five-star review. And just tell people who might be reading what you feel you got out of the show what it did for you and how it helped you. If you’re watching on YouTube, please do comment below the video I love responding to people’s comments on my videos.
Bill Gasiamis 58:48
If you are a stroke survivor with a story to share about your stroke experience come and join me on the show. The interviews are not scripted, you do not have to plan for them. All you need to do to qualify as a stroke survivor who wants to share your story in the hope that it will help somebody else who’s going through something similar. If you have a commercial product that you would like to promote that is related to supporting stroke survivors to recover there is also a path for you to join me on the show for a sponsored episode, or for ongoing sponsorship.
Bill Gasiamis 59:21
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Intro 59:43
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Andrew Stopps flew from New Zealand to the United States to receive stroke deficit-reducing injections that improved his deficits
Episode 241: Brain Tumor, Stroke, and Hearing Loss – Andrew Stopps
Young Stroke Survivor Podcast Website
Young Stroke Survivor Podcast Spotify
From New Zealand to INR for PSE treatment by Dr. Tobinick, improvement in sensation & hand function
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Highlights:
00:00 Introduction
03:50 The first deficits and information about Etanercept
07:52 Off-label use of Etanercept for stroke recovery
16:51 Preparation for Etanercept treatment
26:58 Etanercept helps reduce inflammation
34:34 Cognitive function testing and treatment for stroke
41:04 The initial improvements after the treatment
48:41 The number of shots required for treatment
54:14 Getting back to work after the treatment
1:01:26 Relearning how to play musical instruments
1:08:40 The follow-up treatment
Transcript:
Introduction – Etanercept for Stroke Recovery
Bill Gasiamis 0:00
Hello, everybody, this is episode 297 my guest today visited the Institute of Neurological Recovery in Boca Raton, Florida, run by Dr. Edward Tobinick to receive two injections of Etanercept, also known as Enbrel. The interview is a step-by-step retelling of what happened from the moment Andrew learned about Etanercept, the first consultation, the mission to raise the money for the trip and the procedure, what his deficits were like before the procedure, what happened on the day of the procedure, and what it’s like receiving the injections with the medication.
Bill Gasiamis 0:43
You will hear him speak about his deficits immediately after the injection. What happened in the days after the procedure was completed, and what life is like now that he has returned home to New Zealand and resumed daily living? Andrew Stopps. Welcome back to the podcast.
Andrew Stopps 1:02
Thank you very much for having me back.
Bill Gasiamis 1:05
Thank you for requesting to be back. We last spoke at episode 241. That’s almost 60 episodes ago. So that was a long time ago. It’s more than a year ago. Time flies. The reason we spoke is that you reached out to share your stroke story just like many of the people who have been on the show.
Bill Gasiamis 1:30
And you had a stroke in November 2021. And you had no previous symptoms, no idea that perhaps a stroke is on the cards. And you were also somebody who was recovering from a brain tumor in the past many years before that. Yep. When we chatted during the interview, we spoke about your symptoms, we spoke about pseudobulbar affect, and how you had inappropriate laughing at various times, we spoke about your identity, and how that was impacted because you’re a musician.
Bill Gasiamis 2:09
And there were some things you couldn’t do after the stroke. And we spoke about a whole bunch of other things. And since then, you have decided to do some research on Etanercept. Which is a medication, for lack of a better word that helps stroke survivors get some improvement in their deficits and seems to be helping people get some quality of life back. You are in the United Kingdom.
Andrew Stopps 2:54
No, I’m in New Zealand.
Bill Gasiamis 2:56
Ah, you’re in New Zealand. I don’t know why I thought you were in the United Kingdom.
Andrew Stopps 3:01
I don’t know why.
Bill Gasiamis 3:03
And you’re in New Zealand. And you recently took a trip to the United States, where you went to Florida where I believe the clinic that treats people is there. You had an experience, and you have something to share about that experience. And my first question is, how long ago was it that you were at the clinic for the procedure?
Andrew Stopps 3:37
So I was there six weeks ago. So I had the shot on the second of February and that made a difference.
The first deficits and information about Etanercept for strokeBill Gasiamis 3:51
Before you went there. Just tell us what your deficits were.
Andrew Stopps 3:58
So, I had the fatigue, cognitive fatigue. I had sensory overload. Problems regulating my emotions. My tongue was not on the side of my face was numb. So my speech was a little slurred I guess. Also, my hand was useless.
Bill Gasiamis 4:30
What does that mean? How was it not operating? Well, wasn’t it doing?
Andrew Stopps 4:34
It was like moving through molasses. It was so hard to move. And yeah, and I had bad pain in my right calf.
Bill Gasiamis 4:53
Okay, just from tightness, tension, and spasticity?
Andrew Stopps 4:59
Spasticity, so it was like a constant cramp that would sometimes get worse and sometimes, you know, lessen, but it was always there. So it made walking just, it was very uncomfortable and it was worse at night.
Bill Gasiamis 5:17
As far as your lifestyle, music, work, you know, the ability to be you around the house and all those types of things. What weren’t you able to do? What were you not able to participate in?
Andrew Stopps 5:35
Pretty much everything. The fatigue and the sensory overload precluded me from a lot of things. I couldn’t predict when I’d be fatigued, I could have a really busy day, the day before and be fine. And I could do nothing and have fatigue and vice versa. So it was really hard to predict. There were so many places I couldn’t go.
Andrew Stopps 5:59
Or if I did go, I can only stay for, you know, for a limited amount of time, from a few minutes to maybe half an hour, and then have to leave. So my ability to work was nil. Because I mean, I yeah, I wasn’t, I couldn’t be reliable, because I didn’t know how it’s going to be from one day to the next. And being at home. Like even doing housework. I had to ration out my energy for the day. So yeah, it was hard. It was very hard.
Bill Gasiamis 6:37
And at some point, have you heard about Etanercept? Yep. What was that? Like? How did you hear about it? What were you thinking? How did it get you curious about it? Tell us a little bit about that. Oh, my God, I better look into this type of procedure or product or service or medication.
Andrew Stopps 7:02
Yep. So it would have been probably about nine months ago. So it’s about June last year, I was doing some research into other Strokes, stroke recovery methods, and possible things I could do to help my recovery. Because I was so frustrated with not being able to do anything.
Andrew Stopps 7:25
And I came across a YouTube video of a 60 Minutes Australia story that talked about this woman that went to America and she had all these deficits, and she had this shot. And suddenly she could speak properly and her arm move better. And there was Etanercept. And I knew then that that moment, I have to do this. I have to try this shot.
Off-label use of Etanercept for stroke recoveryBill Gasiamis 7:52
Yeah, fair enough. So that 60 minutes. Video Interview. I’m pretty sure it was about 10 years ago, and it was done at the Institute of Neurological Recovery. And that’s in Florida. And the doctor’s name is Dr. Tobinick and the interview was pretty was pretty cool because you got to see patients go through the process.
Bill Gasiamis 8:31
And then you can see the before and the after the interview, I interviewed them. And now on the Institute of Neurological Recovery YouTube channel, there’s a whole bunch of those stories. Where patients have been, they have a discussion about their deficits and the challenges they showed having the procedure, and then they have some time to recuperate from the procedure, and then they are interviewed about the benefits and some of them have amazing results immediately after the procedure.
Bill Gasiamis 9:09
And it’s in Florida, and there are a few people who are a bit skeptical about things that happen in Florida, as far as medical procedures because their laws are a little bit more relaxed than in some other parts of the United States. And when you ask somebody on the internet, especially on my Instagram page, and when I asked some people about Etanercept ages ago, there was a little bit of hesitation. Some people said it’s okay. Some people thought that it was just a little bit of a scam, to put it bluntly. So tell me about your first approach to the two heme, what that was like how you started the conversation.
Andrew Stopps 10:06
Because I come from an academic, academic background. My first instinct, obviously, in the video was to look up any research, any medical papers, anything I could find. I found a band with a lot of papers by Tonique, which were good, but I didn’t want to necessarily take his word. So I found some independently researched papers, some independent studies done in Australia and New Zealand, and realized that, yeah, these people were getting the same results here and in Australia, as they were getting in Florida.
Andrew Stopps 10:49
So I sent an email to the Institute and put out a questionnaire in the medical form about my stroke. And then the next thing is they booked her an online consultation. And in the meantime, I had to have a whole series of blood tests done, I had to board my medical reports of my stroke. And yeah, and it went from there.
Bill Gasiamis 11:23
Okay, that’s pretty easy. So you’re in New Zealand, and you got a list of blood that they wanted you to get some blood work done on? You had that done? First, did you get the results you sent across? And then was there another discussion? After that? Was there some kind of discussion about the process or the procedure or what was next?
Andrew Stopps 11:45
Yeah, so that once they get all the information, they book a consultation, and then you have about 45 minutes to an hour with the doctor, and he and he talk about the procedure? And, like, answers all the questions and everything like that.
Bill Gasiamis 12:05
Okay, so there’s a lot of upside, what are the risks? Were there any risks that you were made aware of, that you found in the research that you needed to be aware of?
Andrew Stopps 12:16
Etanercept is a drug that’s used for arthritis. So it’s normally injected into joints. And what it does is it reduces inflammation. And makes makes life more bearable. People who are having it done for that reason have to go on a long course, of treatment of a tennis app for months. And if you tend to that long, it can make you susceptible to infections and particularly reactivate certain infections, if you’ve had them before. Like, I think Tuberculosis was one of them.
Bill Gasiamis 12:55
Reactivate it. Wow.
Andrew Stopps 12:59
Because for stroke, you only have a maximum of three shots, and they’re the first two are done a week apart. And there’s the third one done a month later. Because it’s, it’s so few shots, there’s no side effect. And it either works or it doesn’t. So you either have a result, or you don’t. So the fact that there were no known bad reactions to this drug and you know, you have to sign a, you know, a waiver saying, you know, you’re aware.
Andrew Stopps 13:44
But, I mean, I’ve signed those for everything. So, you know, every procedure overhead, it’s, you know, had potentially devastating side effects. So, be Yeah, the fact that I would either have, you know, have a good result or where I would have no result, you know, was good, I can live with that.
Bill Gasiamis 14:05
In the description. When you type Etanercept into Google, you get an answer. Etanercept is a medication used to manage and treat autoimmune conditions, such as psoriasis, rheumatoid arthritis, psoriatic arthritis, juvenile idiopathic arthritis, and ankylosing spondylitis. Seems like they’re all degenerative diseases related to bones and bone structures. Yep. But it doesn’t say that it’s for use in stroke, okay, so that’s kind of I think, where the challenges lie.
Andrew Stopps 14:55
And that’s where some people get nervous. Because it is an off-label use for that medication. Tobinick is the only one that does the treatment. And like I said, there have been studies done here and in Australia, where people have had the same, you know, benefit from it. But they’re just really slow. Adding it to the list of stroke recovery, medications, or treatments.
Bill Gasiamis 15:31
So you’ve gone through the initial discussion, you’ve delivered your blood, they’ve looked at your blood, and they’ve said, you’re a candidate. What did they say? How did it go from there?
Andrew Stopps 15:43
So obviously, one of the blood is to see if you’ve ever been exposed to tuberculosis because they don’t want that to be reactivated. And my mind came out negative. So once they’ve got all the information, and they saw what kind of stroke I had, how long ago I had, and stuff like that, they then say, okay, yep, you’d be a great candidate for this. And they lock you in time for the initial shot. Okay. So I think I had my consultation in September last year, and the first available appointment was probably the second. So that’s my talk.
Bill Gasiamis 16:27
Okay. So then you have decided to go for it. Did you make the decision quickly? We, that’s Yeah,
Andrew Stopps 16:37
Yeah. Because I need to know, in my heart that have done everything possible. And if it didn’t work, then at least I know, but I had to know that I’d done everything possible to help my recovery. Cool.
Preparation for Etanercept for stroke treatment
Bill Gasiamis 16:53
You make a booking, you choose your flight, and you choose the accommodation. What is it like going on this trip? What are you thinking? How are you processing this whole time because it’s not a holiday, you’re not going to a beautiful, warm destination where you’re going to kick back and enjoy the sun, have a few Chardonnays or whatever, it’s a very different idea the traveling is for a specific purpose. Are you completely totally set in your mind that I’ve got to go get a result? I must get a result I have to get a result like what were you thinking?
Intro 17:29
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. How long will it take to recover? Will I recover? What things should I avoid? In case I make matters worse, doctors will explain things. But, if you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 17:53
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called Seven Questions to Ask Your Doctor about Your Stroke.
Intro 18:13
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition. And they’ll help you take a more active role in your recovery. Head to the website. Now, recoverafterstroke.com and download the guide. It’s free.
Andrew Stopps 18:33
I’m just going to back up a little bit. So the treatment itself was not cheap. It’s very expensive. And so I had to crowdfund for it because there’s no way I can afford this treatment when I’m not working.
Bill Gasiamis 18:51
Okay, can you tell? Can you tell me how much it cost? Yeah,
Andrew Stopps 18:54
sure. So the injections, the injection itself is $8,400. US The consultation is $1,000. And subsequent injections are $8,400. So when you and that’s us, when you factor in the exchange rate, and then the flights and everything else, it does mount up the cost of having this.
Bill Gasiamis 19:20
So three injections at $1,400?
Andrew Stopps 19:23
I never had three but yeah. So it mounts up.
Bill Gasiamis 19:33
So the procedure, just the procedure, the two injections, and the travel is somewhere in the vicinity of about 18,000 US dollars.
Andrew Stopps 19:48
And then you know, the exchange rates for New Zealand dollars in my case Australian dollars and yours and, and, you know, it the cost mounts.
Bill Gasiamis 19:58
Yeah. To AUD it’s 27,000 Australian dollars. Okay. It’s not something that everybody can manage to fund, for sure.
Andrew Stopps 20:11
And I had to crowdfund for that amount because I didn’t even have close.
Bill Gasiamis 20:19
I love the fact that you did that. So how does that? How does it feel to put that out there? In one of the chapters in my book, I talk about the things that people need to access to improve their recovery. And, I know that things to help people improve their stroke recovery are always expensive. One of the things I suggest is that they jump on to find a crowdfunding provider and run a crowd-funded campaign. What’s it like for you to go through that in your mind that you’re going to ask people for money to help you do this?
Andrew Stopps 20:56
My, initial reaction is to not want to do that. But I realized that this was important to me, I needed to do this. And this is the only way I could do it. So um, so yeah. So that’s why, why, and how I started. And literally, I started raising funds. I think, the same day, I had the consultation. So when I knew that I was a candidate. That one I knew that I had a date booked for that day, I, you know, set up the crowdfunding.
Bill Gasiamis 21:40
How long? Did it take you to raise the money? Or did you raise all the money?
Andrew Stopps 21:44
Yeah, so it took me five weeks. And initially, it was very slow. And in the end, some were very kind and donated. Like the bulk of the money in.
Bill Gasiamis 22:04
And do you know who that somebody was?
Andrew Stopps 22:06
Yeah.
Bill Gasiamis 22:07
Wow, that’s cool. ‘s an amazing gift, isn’t it?
Andrew Stopps 22:11
It was an incredible gift.
Bill Gasiamis 22:15
Now, I love the idea that you reached out, you overcame your inability to ask for help. And especially in this way, asking for money for a trip to do something like this. It seems very, it seems selfish, but it’s very selfless. To do that, I think it’s a very amazing thing that you did go out and seek help and ask for support in this way.
Bill Gasiamis 22:45
And what you’re doing is you’re not putting a gun to anybody’s head, you’re just saying, Hey, this is what I’m planning to do. If you can help out, help out. This is what the money is gonna go towards. And nobody’s obliged to do anything, if they want to they can.
Bill Gasiamis 23:00
And that’s what I love about it. Right, we need to overcome the barrier of how it feels to supposedly ask for help, everyone is entitled to be helped to have help. And everyone’s entitled to go after the best recovery they can go after. And in this day and age, with the fact that we can raise funds through these services, I think it’s so important that we utilize that service and ask for help.
Bill Gasiamis 23:30
And just even if you raise half the money, or a third of the money, or a 10th of the money, it doesn’t matter, as long as I as long as you’re being creative about that, and you’re being honest about what you’re going to do with the money. And then you’re being honest with the whole process. I think it’s really important that we encourage people to ask for help more.
Andrew Stopps 23:51
Yeah. That’s always been hard for me. Like I’ve always had, I’ve always found it hard to ask for any help, even with my stroke recovery. So yeah, that was a big, a big step for me, was doing that. But I just knew how important it was.
Bill Gasiamis 24:11
Brilliant so you’ve raised the money, that’s a huge thing that you’re excited or imagined. What are the what are the emotions, the feelings that you’re going through when that happens?
Andrew Stopps 24:23
I mean, I was elated when I had all the money and I could buy the ticket and I could, you know, pay for the treatment. That was like it just I was excited. But also with Etanercept the way that it works is it reduces inflammation in the brain. So when you have when you have a stroke, chronic inflammation, and it’s inflammation, that causes a lot of deficits.
Andrew Stopps 24:55
So, if you have the inflammation, Etanercept is gonna work, you know, fantastically for you. But sometimes you don’t have much and the deficits are caused by actual brain damage from the stroke. So and it’s hard to know, you know, whether it’s your deficits are caused, by the inflammation or by brain damage. So it’s it’s kind of a gamble. And I kind of felt going there, and I will and when I arrived there, I felt, wow, what’s going to happen if nothing happens?
Andrew Stopps 25:34
Like, I know, I was saying to everyone and myself, you know, um, you know, accept whatever happens happens. But I knew deep down, I’d be gutted. If nothing happened, and I’ve come, I’ve traveled all that way halfway around the world. And, and there’s no result.
Bill Gasiamis 25:54
You got your heart set on it. You’re thinking about all sorts of things related to what you will be able to do what you hope you’re going to be able to do how you hope it’s going to feel all the improvements you hope you hope to get. And then there’s that niggling thing in the back of your mind that goes, you might not get anything.
Andrew Stopps 26:12
Yeah. And then I would feel like a fraud. Because, you know, I’ve asked all these people for money for help, and nothing happens.
Bill Gasiamis 26:22
No result. Yeah. The people donating there. Are they aware that there’s a possibility of no result? Have you set that? Have you given that information to them so that they know that you’re going to go there and what happens if you come back with nothing?
Andrew Stopps 26:38
Yeah, I had written, and I’ve done some videos that sort of explained how Etanercept worked, and that there were no negative side effects. It either works, or it doesn’t. And I won’t know until I’ve tried it.
Etanercept helps reduce inflammationBill Gasiamis 26:57
You know, what you said was interesting that it helps decrease inflammation. One of my main goals during my stroke career was to reduce inflammation in my brain. And, and the reason was, is because I was on dexamethasone, which is a steroid, that helps to reduce inflammation.
Bill Gasiamis 27:16
And it’s also used by people who have arthritic conditions. And it does reduce the inflammation in the brain. And it helps recover the brain and heal the brain. But it has a whole bunch of side effects. You’re going to typical steroid side effects, anger, weight gain, inability to sleep, a whole bunch of things. And it was terrible to be on. And because it was so terrible, I just decided to Google, you know, back in 2012, I decided to Google, how to decrease inflammation in the brain.
Bill Gasiamis 27:52
And nutrition came up as a main ingredient, the main way to do that, right, so some foods, were going to make inflammation in the brain worse, and some foods were going to make inflammation in the brain better. And what I know now is that if I, for example, pasta, or bread, that they are, they tend to be inflammatory foods, for lack of a better word. And what they do is they kind of switch on the inflammation in my brain, and they make me more fatigued, more tired, they make my deficits worse.
Bill Gasiamis 28:24
And it’s kind of like this dance, if I can avoid having bread, or pasta, that particular sugar, for example, is another one. If I can avoid having those foods, I don’t notice my deficit so much. They’re still there. I still feel my arm the way that it feels in my leg the way that it feels. But, but it kind of allows me to settle things down. Which means that the deficit inflammation is temporary, right?
Bill Gasiamis 28:55
So in a minute, I want to talk about that. I want to talk about how a tenant said, well, let’s talk about it now. It decreases inflammation. But from my understanding, inflammation can be reactivated by me, for example, by doing the wrong thing and eating the wrong foods. What happens in this instance is designed to reduce inflammation. But then does it last?
Andrew Stopps 29:25
Yeah, it does.
Bill Gasiamis 29:26
Okay. Let’s leave it at that. It loves. All right. So the day of the flight comes? Yep. Who did you travel with?
Andrew Stopps 29:41
In New Zealand, to Houston, and then united to
Bill Gasiamis 29:45
Florida. On your own or with anyone else with you?
Andrew Stopps 29:50
Know, I work with my husband. I needed to have someone with me. I can’t navigate and I couldn’t ever get to airports alone. Um, I happen to have a whole sensory overload. So I had to have headphones to block out the sound, which is support. Filler Lorazepam on hand, just in case. It was yeah, it was a bit of a bit of a mission to get me there.
Bill Gasiamis 30:22
You arrived in Houston. And then you’ve got a connecting flight to Florida.
Andrew Stopps 30:28
Well, no, we didn’t actually because my husband is American. So we got we flew to Houston, and then flew on to Memphis and stay with his family for a week. So we got the week before the shot. And then we flew down to Florida. The day before the shot. I had the injection in the morning, and then we flew straight back to Memphis that afternoon. And I spent another week with his family. So it was nice that way. It was it was yeah, it was really good to see the you know, to see the family.
Bill Gasiamis 31:05
It was less rushed. Therefore, you guys have to pay for less accommodation. You got to see the family. Yeah, might combine all of that. That’s cool. So the day comes to jump the plane again, to go to Florida.
Andrew Stopps 31:26
Well, yeah, because I’m American airports are notoriously bad to navigate. And even worse when you’re dealing with all the deficits from stroke. So yeah, the fly down, though, was I was I was anxious. And then we were delayed and were supposed to get in at lunchtime on the day before, and we got in at 1 am or something. So it was just, it was yeah, it was a nightmare getting there. And I really, I thought is this, is this a sign? Like is the universe telling me not to do this? Because we just, you know, it was so hard.
Bill Gasiamis 32:09
I love it my favorite philosopher from back in the day, Marcus Aurelius had this line, which said the obstacle is the way so for me, it would have been a sign that that was the way to your particular goal there. Do the obstacles the challenges or the problems mean that you were on the right path?
Andrew Stopps 32:30
Yeah, it is yeah.
Bill Gasiamis 32:33
You’re right in Florida. And then what do you do to your accommodation? Do you go directly to the clinic? What happens then? Okay,
Andrew Stopps 32:41
When we got to Florida, it was night, and we went straight to the hotel. We got there at about 1 am. And then we had to get up at six the next morning to get out to the clinic because we were about a 40-minute drive. So we had an Uber out to the clinic the next morning. My appointment was at 8:30 in the morning, so yeah.
Bill Gasiamis 33:04
The appointment, you go to the appointment, you see the medical staff for the first time, what’s that? Like? What’s the welcoming procedure? Like?
Andrew Stopps 33:15
It was interesting. So the very first thing that happened was a COVID test. We got COVID tested, and then we went through, obviously both negative and we went through and I had about two hours of cognitive functions testing now, okay, I never had cognitive function tests here after the strike. I hadn’t had one since I had the brain tumor. So that in itself was fascinating, because I learned other deficits I had from these tests that that went were discovered, but you weren’t aware up. Like I had aphasia.
Bill Gasiamis 34:06
Okay. That’s interesting, definitely interesting because I know what that’s like because I had after the second blade in my brain, I had a lot of deficits, cognitive function deficits. For example,, the ones that I know, impacted me were, that sometimes I couldn’t remember to begin or start a sentence. Sometimes. I could remember who came to visit me. You know, my timeline was all messed up.
Cognitive function testing and treatment for strokeBill Gasiamis 34:34
I had no idea I couldn’t work. I couldn’t type an email. I couldn’t do any of that stuff. Like there was a whole bunch of problems. And I remember going to my psychologist and saying to her, that I had all these troubles and she said to me, has anyone done a neuropsych assessment? And I was like, No, what’s that?
Bill Gasiamis 34:51
She was the first person who introduced me to neuropsychologists and told me that I should go and see somebody and get assessed because they’ll give me a cognitive function test that was the first time I realized that maybe we need to look into this a little a little further, and they’ve mentioned it to me either. Yeah, turns out had some deficits in that space, and then they went away.
Andrew Stopps 35:13
It just boggles my mind that, you know, we have a, like a traumatic brain injury, and no one is testing the cognitive functions. I just, I kind of get my head around that, that there’s something that they don’t do. But anyway, they discovered I had anomic aphasia. So that meant that, for example, if I was told to name all the words, starting with S, I couldn’t.
Andrew Stopps 35:42
So you know, that was one of the one of the tests I had to do in a minute name, although words like this now could like, say, two words, and then I’d be going on. And that was it. Even my last name stops. I didn’t say, my husband’s name’s Sean. Like, I didn’t say, and he’s looking at me going. You know, and it’s, it was amazing. And like, I think there were three letters that I had to do that with, and all of them were the same.
Andrew Stopps 36:18
I just sat there going. I couldn’t think of any words, it was. Yeah, it was it was it was amazing. And, you know, that they test to see how much function my right hand had. And it was so actually good having those tests and, and getting, like a really clear idea of what my deficits were and how, you know, how bad they were.
Bill Gasiamis 36:50
It’s obviously to gauge where you’re at, get a baseline, yes, that they can then determine the impact of the intervention of the medical procedure, right on the shot. Yep. So it’s that’s taken about two and a half hours. Are you hardly exhausted by then?
Andrew Stopps 37:10
Oh, my God, I’m, I’m so fatigued at the end of that time. I mean, I was trying not to cry. Because I was so exhausted. I just wanted to sleep. But then, of course, I was ushered through to the treatment room. I think we had like 10 or 15 minutes, where I was just sitting, waiting. And then the next thing I was throwing the treatment room, and there were other patients there as well, having, you know, second or third treatments done.
Bill Gasiamis 37:46
Okay, did you get to meet any of those patients? Did you speak to anybody in the waiting room or anything like that?
Andrew Stopps 37:52
Oh, no, because we all had like, separate rooms that we were in? Yeah.
Bill Gasiamis 37:57
Okay. So then you’re being taken into the treatment room. Tell me about that procedure. How does that go? The extra treatment? Yeah, the process before you receive the injection during the time, you’ve done the testing, you know, where your baseline is?
Andrew Stopps 38:17
So after that, I didn’t meet Dr. Tobinick. I’d spoken to him online but I never met him. I was with his medical staff beforehand having all the tests done. And then he reviewed my results and then he came in and we talked about it you know, my deficits and and maybe the fact that I’m a musician and what I’d hoped to get out of the treatment, and yeah, okay, all right. And then he told me like well, this is what to expect you know, the feeling you when you get the injection and where he does it and how they rotate me head down on the table.
Bill Gasiamis 39:09
What does it feel like when you get the injection is this some kind of a sensation that you notice?
Andrew Stopps 39:14
There is so he said that when you get the injection they do it in the back of your neck between the vertebrae. So it goes into your spinal fluid. He said that some people feel the warmth from the medication going in the bitter thing and the metallic taste. It felt to me it felt hot. When it went in it stayed crazy like a beasting and I definitely got a metallic taste but as soon as he stopped putting the fluid in then that sensation stopped but it was uncomfortable.
Bill Gasiamis 39:54
Okay, for sure. So the penetrating your spine through tool The vertebrae accessing the cerebrospinal fluid through the spinal cord. Yep. And they put an injection in, you have the feeling and, when they’re putting the injection in your face down on a face down where I know.
Andrew Stopps 40:19
So what I’m doing at the time is I’m just leaning forward, and sorry, exposing the back of my neck. And then once he’s put the injection, and the needle itself is so tiny, like, I didn’t feel the need to go in, it’s just the medication. Then you lie back, and then they rotate the chair. So it’s flat. And then so it’s it goes. So it’s head down your legs above your head height. Yeah, yeah. Yeah. And your legs are strapped down, so they don’t slide off.
Bill Gasiamis 40:49
Yeah. And from my understanding, maybe I’m wrong. The reason that they do that is because they want the medication to go through the blood-brain barrier and enter.
Andrew Stopps 41:01
That’s correct.
The initial improvements after the Etanercept for stroke treatmentBill Gasiamis 41:04
So from the injection. After the injection, immediately, you’re tipped backward so that your legs are above your head. How long have you been in that position? About three minutes? Okay. And in that time, are you noticing anything happening?
Andrew Stopps 41:25
Definitely. So the first thing I noticed, when I was laying there was that my fatigue just dialed down. It was like some, some was taking a switch and going fatigued on 10 9 8 7 6 5. And, like, within three minutes, all my fatigue had gone. And my need to cry had gone, it was gone. So that was the first thing I noticed. And then they brought him back up, right, and set me back up. And then I started noticing other things.
Bill Gasiamis 42:01
What other things did you notice first?
Andrew Stopps 42:05
So the pain in my leg was the same, it was like someone taking this dial and dialing it down until it was gone. And this is one of the first five minutes you could hear my speech getting better and better. And I can start to feel my tongue in my mouth. And that sensation was so weird because I didn’t realize that I had no feeling in the tip of my tongue. And suddenly it comes back.
Andrew Stopps 42:38
And I had this bright big tongue in my mouth. And it was so so off-putting. And even today, six months later, I had developed bad habits with my speech to compensate for the fact that my tongue was numb. And so I’m trying to undo those habits now.
Andrew Stopps 43:02
But yeah, that was what happened. And then they gave me a glass of orange juice for the metallic taste. And I took a drink of it. And the taste was just unbelievable. Like, I didn’t realize how my tastes had been affected as well. I had lost some of my taste. And it just was like, This taste was so bright. That’s the only way I can describe it.
Bill Gasiamis 43:29
Okay. Yeah. That makes sense. Oranges. Sweet, bright. Okay, I get it. Yeah. So you’ve, you’ve noticed your tongue is back on board. Fatigue is dialed down, that pain in your leg is dialed down. What else have you noticed?
Andrew Stopps 43:48
And then they asked me how my head was. And so I started moving my hand and like, it doesn’t feel like molasses anymore. I can move it freely, is just really weak. And as silly as it’s getting stronger. But yeah, I’m having, to learn how to move again. But at the time, all of a sudden, my head was just not hard to move. Yeah. So I noticed all those things happen within the first five minutes. Was it just amazing?
Bill Gasiamis 44:26
And then are you on your feet? At all, when you get on your feet? How soon are you on your feet?
Andrew Stopps 44:32
So probably. So after I’d had the shot and I was back upright again, they put the camera on, and he talked me about what I was doing and what I was wasting. Then they do some of the contract tests again like the the Aphasia test, and suddenly I can name all these words starting with s and t and other letters. Um, and had jumped from like to, you know, in a minute to nearly Well, 30 words in a minute. It was it was just so quick. Yeah, it was it was so fast how it happened, how I got things back.
Bill Gasiamis 45:22
What’s the husband saying? I’d be an emotional wreck. I’d probably cry my eyes out if I were you by then. And I’d have everyone in the room, you know, off the deep end with me as well. Yeah, as a coping.
Andrew Stopps 45:36
It was it was a bit like that. Yes, it was. Yeah, especially when my hand can start to move. And we realize that now, me being able to play my instruments again was possible. That, yeah, that was when things got emotional. Yeah, because having lost that ability for two years, was in a way heartbreaking. And subtly. You know, seeing seeing the light in the tunnel was amazing.
Bill Gasiamis 46:19
What instruments were you a fan of before you had the stroke?
Andrew Stopps 46:27
Clarinet saxophone and flute.
Bill Gasiamis 46:30
Okay. So very, I hate to say it this way. But they’re very handsy kind of instruments, right? All the dexterity needs coordination of all the fingers. It’s a big job, right? So you realize that you’re probably going to be able to somehow play it again? Is that what you realized?
Andrew Stopps 46:51
Yeah, yeah. Because suddenly, I can move my fingers like independently, which, you know, I mean, I can move my hand, you know, a bit before the stroke a bit, sorry, a bit before the shot, but my fingers have moved like two at a time or, you know, be pulled by other fingers. That might mean Oh, my index finger was hardly moving at all. So suddenly, you know, having all of my fingers back was amazing.
Bill Gasiamis 47:20
So before, they didn’t have individual control, so to speak, they had moved, or didn’t move together, they kind of had were impacted by each other rather than separate from each other.
Andrew Stopps 47:35
Yeah and also, my thumb wasn’t rotating properly. So I had no pinch at all. And I need that, that thumb to be rotated to better put it behind the clarinet. And now it’s rotating.
Bill Gasiamis 47:50
So then you’re five minutes in, all these things have come back. All those things have recovered, dialed down. You’re aware that some things are going to be possible that weren’t possible before? And then what happens after the first five minutes? What’s the procedure like?
Andrew Stopps 48:13
I think that’s when they gave me the tests on some of the tests again, where I was, you know, scoring sort of low on the tests and to see, you know, how much improvement there was. And then, once they, once they, you know, had done those and seen how much improvement there was. I get that is your sort of central New a really, that’s, that’s the end of it.
The number of shots required for Etanercept for stroke treatmentBill Gasiamis 48:41
Okay, so why do some people need more than one shot?
Andrew Stopps 48:48
It depends on how severe the deficits are. So, if it works, if the first shot works and the deficits are severe, then the second shot is going to help improve those. And then if they’re severe, a third shot like a month later, will, you know, take it to the next level again. All
Bill Gasiamis 49:10
in all, how many shots did you have to do? Okay, how long after the first show didn’t have the second shot? Awake? Okay, so,
Andrew Stopps 49:21
we did the same thing, but this time, when we flew back, we didn’t go back to Memphis, we went straight to Houston and then flew back to New Zealand. But there was no that I didn’t get as much reaction or improvement after the second shot. I think because the first shot didn’t say much.
Andrew Stopps 49:49
We did the same thing. Again. Some went down the night before. I had the shot, and then the afternoon flew, flew out. Okay. So I mean, I could Travel everything coming back after the first shot was just it was chalk and cheese. It was unbelievable.
Bill Gasiamis 50:08
Were headphones necessary? Were you having any sensory issues?
Andrew Stopps 50:12
Nothing. I didn’t have anything at all. It was incredible. So suddenly I met at a busy airport with loads of people and flights delayed normally I’d be, you know, doing everything I could to block my senses out. And I was just another annoyed customer because the flight was delayed. It was It was unbelievable. How, yeah, how quick and how much change there was in just a few hours. Getting there and leaving.
Bill Gasiamis 50:47
How long does the flight from the United States take to New Zealand?
Andrew Stopps 50:53
14 hours.
Bill Gasiamis 50:55
Okay. And what’s that trip? Like normally, when you were going there? What was it like to be on the plane for 14 hours?
Andrew Stopps 51:02
It was horrible. I had to keep getting up and moving around because parts of me wouldn’t cease up. I had no eyemask headphones to block out sound. It was just yeah, it was it was just I took some sleeping tablets and translated for most of the trip. Because it was just Yeah, it was horrible. Coming back was It was great. was a really enjoyable flight.
Bill Gasiamis 51:38
Enjoyable. You have changed 100% If a flight for 14 hours is enjoyable. Something is going on there. So what you’re telling me is you got back and then what happens you get back and tell me because then you’re navigating your house for the first time since the meditation.
Andrew Stopps 52:02
Yeah, that’s the thing. Like, I couldn’t wait to get back because I wanted to see how everything was going to feel. And coming home, it felt like I was just picking up after two years where I left off. And that’s been a good thing and a bad thing. Because I’ve been trying to do everything I could do exactly as before the stroke. And I can’t, because my right side is physically still really weak.
Andrew Stopps 52:42
Because it’s been so basically immobile for two years. And so I get physically tired, like exhausted, because I’m, you know, doing everything I was doing before the stroke. You know, I’ve gone back to work for the first time since the stroke. While and even though it’s I’m limiting myself to two to three days a week. You know, it’s it’s physically tiring.
Andrew Stopps 53:22
So, relief teaching. The first day I did that, when I got back here I was stressed about it. I didn’t know how it was gonna be I didn’t know if I was gonna get you know, live in the class. I didn’t know what was going to happen. And when it didn’t, it was it was great. But you know, when you’re looking after kids for five hours a day and you’re on your feet, that’s even tiring when you don’t have a stroke. And so, yeah, like last week, I did three days in a row. And by yesterday, I was just like I was so physically tired. I felt like I’d run a marathon.
Getting back to work after the treatment
Bill Gasiamis 54:14
I can relate to that. That’s pretty. That’s pretty normal for people who are getting back to work after a stroke because it’s a big adjustment. Yeah, under normal conditions, even if you haven’t had an intervention like you’ve had is a massive thing to get able to be used to dealing with all of the drama, all of the children standing up thinking talking,
Andrew Stopps 54:41
was standing up I didn’t even think about how difficult physically that was going to be because I hadn’t been standing up for more than 30 minutes. Like I wouldn’t stand up for long periods. Right before that shot, and suddenly I’m standing up for like, you know, 1234 hours and wondering why my legs start feeling like jelly. You know, it’s just standing, you just standing Andrea, and why the hell can’t you do that? But, you know, if you haven’t been doing that for two years, it’s hard,
Bill Gasiamis 55:18
You got to retrain it, and that the deficit that you’re experiencing that weakness is something very common to a lot of stroke survivors, you know, one side is weaker than the other side, it does come better. I know, my left side is a lot is a lot weaker than my right side, the recently I started the gym. And I feared that I wouldn’t be able to do free weights. So for example, when I was doing a dumbbell bench press, I thought that it was better to use a bar and one of those machines that are safer in my mind to do a bench press on.
Bill Gasiamis 55:18
So that when my left arm gets weak, I was concerned that I would drop the weight on my left arm when it took, and also thought that I wouldn’t be able to hold the bar level and in a balanced position. But it turns out that after a long time, and being gentle with the recovery, and starting on the machines that are supported, and then doing very lightweight, and just getting good at the movements, that that you’re bringing, I was bringing that left side up, back online, back online, just teaching a process, teaching at a process.
Bill Gasiamis 56:36
And then with the weight, the weight was the correct weight for my left side, to get to 10 repetitions, for example, three times, it’s a bit like from my right side. But it doesn’t matter. Because I’m not trying to lift the heaviest weight possible. I’m trying to rehabilitate my left side, while I’m working on the right side. So we, so that comes like the strength does come back in time and it just requires rehabilitation, that’s all.
Bill Gasiamis 57:10
And just put something like a car, if you haven’t started the car for two years, and it’s just been sitting in the driveway, it’s going to chug and it’s going to feel a little bit different as everything starts to get lubricated and warm up again. And I find that my left side works better on the second and third rep than it does on the first rep. The first rep is kind of reminding me what to do.
Bill Gasiamis 57:38
And then it starts getting better. And then with the second set, the left side seems to know, oh, yeah, we’ve done this, we know what to do. And then we’re good to go. And I get more confident with the second and third sets as well. So it’s interesting. So you’ll get there. But I imagine, you know, you have expectations.
Bill Gasiamis 58:01
Even though you’ve had the injection, even though you’ve noticed there are benefits, you still have expectations of yourself. And you want to get back to normal processes and normal life as quickly as possible. And now you’re just kind of finding where where the threshold is. And yeah, you step back a little bit to give yourself recovery and recuperation.
Andrew Stopps 58:25
So firstly, the drug keeps working for about six months. So you see improvement over six months. And you don’t have to have follow-up shots. Like I’m not gonna have to do these every year or every couple of years. Like that’s it. But I have found this kind of distance now that my mind is clear now that I don’t have, you know, cognitive fatigue, now that I don’t have sensory overload. I’m thinking that I can just go back exactly to where I was two years ago.
Andrew Stopps 59:06
But in reality, things are changing, almost daily, like with my with my speech. That’s changing as as you know, my tongues are learning where to how to articulate words. My arm and my hand are changing all the time. And so it’s just yeah, it. There’s there’s so much newness that I have to get used to. While things are settling, settling in, the only thing that I have left over from the stroke is the muscles on the right side of my face.
Andrew Stopps 59:51
Automatically break into a smile when I’m emotional when they’re happy or Oh, not too though, just creep up. Which is interesting. And that’s the only thing now that I have left. From, from the stroke. Everything else seems to be falling into place. Like, is it coming back online?
Bill Gasiamis 1:00:20
You seem comfortable moving. I think is it your left side right now when we’ve been talking for about an hour, and your right side doesn’t get a lot of use. Is that just because of habit?
Andrew Stopps 1:00:31
Yep, I’m, I am constantly reminding myself and Shawn’s reminded me as well to use my right hand and use my right side more. And, you know, like, when I’m in the kitchen, for example, I will constantly think, you know, I’ve got to use my right hand to pick up the cart or to pick up a plate or to grab the cutlery, you know, to get used to picking it up. But then in other situations, like here in front of the computer, I forget again, because I’m so used to just doing everything left-handed.
Bill Gasiamis 1:01:17
Have you been able to pick up the instruments? I imagine it’s beautifully performed as before.
Relearning how to play musical instruments
Andrew Stopps 1:01:26
No, but it’s incredible. When I pick up, especially the clarinet, because that was my first instrument, and put my fingers on it, my right hand, just go straight to where it says go, it just remembers. It knows exactly what it has to do. And I can, like, move it on the keys, like three or four times, and then my fingers get too fatigued and my hand starts to creep up. And then you know, I have to stop.
Andrew Stopps 1:01:53
But it’s yeah, it’s it just feels like holding the clarinet was like putting on an old comfortable jumper. It just feels so natural, and so good. But it wasn’t gonna say we got back to back home from the States the day before Valentine’s Day. And Sean said to me that day. This is the best Valentine’s Day President I’ve ever had, having my husband back. And I was kind of hurt when he said that. I said I didn’t realize those were gone. And he said, Yeah, yeah, you were a different person. And now you’re back. You’re back to who you were. And that was emotional.
Bill Gasiamis 1:02:44
It makes sense. Because the partners and family members are dealing with how they experience you after stroke as well. They are mourning their losses about you, your relationship, and how you went about life. And they’re probably also thinking, Oh, why couldn’t we just go back together? And everything was the same as it was before?
Bill Gasiamis 1:03:10
Because I know stroke survivors who have said that, you know, I’ve said that. And then my wife has said that in not so many words. She said, Man, wouldn’t it just be good not to have any of this shit to deal with? And it’s like, yeah, of course. But, you know, we have to deal with it now.
Andrew Stopps 1:03:28
But I also think it was mainly the fatigue and the sensory overload the emotional regulation, like all other things, we had to factor into everything that we did every decision we made. And suddenly, we’re back home. And like, we didn’t have to worry about that. We didn’t have to worry about Andrew having a meltdown.
Bill Gasiamis 1:03:50
We went through similar things, you know, we’d be away. I’ve saved on a holiday or what have you. And I’d say to Christine, count me out today, do what you whatever you need to do, go and say whatever you need to say, but I’m out. I’m going to just chill out in the hotel room by the pool or at a cafe. I don’t want to be involved in any of it because I can’t and you know, that’s not It’s not fun to be overseas and not be able to do something for example, right?
Bill Gasiamis 1:04:19
Some people go through that at home. I couldn’t go to particular parties and events and all the things that people invited us to go and do and see. You know, you have to you have to not go sometimes you have to Yeah, heal and recover and not make it worse.
Andrew Stopps 1:04:38
Well, it’s interesting because the day after we got back from the first shot to Sean’s family, we went to a family dinner was his his extended family. And there were 21 people in the house for this dinner, from babies right away theater your elderly and it was So noisy and there was so much happening. And if that didn’t happen two days before, I would have lost about three minutes in the house, because it was so much to do.
Andrew Stopps 1:05:10
And I was just loving it, I was enjoying it so much. meeting other people and chatting. And it was just so it was so remarkable how I could go from not being able to tolerate that to being able to load that in a matter of 24 hours. You know, and some people who are skeptical of this treatment, and I’ve said yes, it’s a placebo. But I don’t know, I can’t see how that could be a placebo. Because it’s so major, it’s such a big thing.
Bill Gasiamis 1:05:52
But it’s also got some really good results in helping people with arthritic conditions and decreasing inflammation in joints. So it’s not placebo-like it wouldn’t work on arthritis in that way, yeah. Yeah, this is what you can’t get rid of when arthritis has done damage to joints, cartilage, and all that kind of stuff. You can’t undo the damage, you can only it’s like a brain, right?
Bill Gasiamis 1:06:20
When we get a brain injury, the injury doesn’t go away, in where it’s injured. The inflammation around the area is another thing. But the same thing with a bright, a bone that’s injured when the bone has become injured, the injury, the scarring, or whatever you want to call it is still going to be there. The wear and tear. Yep, so what so what it does is it decreases the inflammation signals around that so we can reduce the pain that people are suffering, it doesn’t take away that damage.
Andrew Stopps 1:06:51
What to noticed when I was doing my research leading up to this, and going online and asking people in stroke groups, you know, if they’d had the treatment and about it, and there was a small group of people that were really against it, and really, like one person, in particular, was quite aggressively, you know, discouraging me.
Andrew Stopps 1:07:19
He said, I know, people pay this money and nothing happens. Well, you’re told that from the start, like, It either works or it doesn’t. And this is why. So if it doesn’t work, it’s not because it’s a scam, it’s because you have inflammation, you have brain damage.
Bill Gasiamis 1:07:39
People need to understand that the damage is the damage once it’s there, it’s there, you’re not getting it back. If that means that the damage has caused you not to be able to walk well, then that’s not going away intercept. Is it 10 has is not real? Damage. No, it’s so in other parts of the brain that have been inflamed and do not operate properly to operate better.
Andrew Stopps 1:08:06
Yeah, yeah. And so, you know, there’s, there are people now who I’m talking to online, who will ask me about the procedure and the process, and may try and make a decision whether they’re going to have it. And it is, like, for me, the decision was, like, regardless of what happens, I have to know, I’ve done everything. So I’m prepared to gamble and take that risk.
The Etanercept for stroke follow-up treatmentBill Gasiamis 1:08:40
Is there any follow-up now with the clinic?
Andrew Stopps 1:08:44
Yeah, I’ve got some paperwork I have to fill out in a couple of weeks, just to see how, you know how I’m progressing. But other than that, if I feel like in a couple of years, I want to have the third shot. Or then I’ll you know, I’ll do it. I’ll just, you know, I’ll see how much the improvement makes.
Bill Gasiamis 1:09:11
This is still an option. It’s a possibility.
Andrew Stopps 1:09:13
Yeah, yep. But then again, you know, it just depends on how much progress I make now, over the next couple of months. I mean, I’ve made such a huge amount of progress and like I said, I’ve just got to be careful of not burning myself out because I am like, going back and doing things exactly as I was doing like it’s funny, the school I was at doing a relief.
Andrew Stopps 1:09:45
Like when I came back when I started up again, was the school I was at the day before my stroke. And so it was like nothing had happened for two years. I just went from that Friday, to this Monday. And it’s two years later, I’m doing the same thing again. It was it was it was bizarre.
Bill Gasiamis 1:10:09
Like a two-year gap of stuff.
Andrew Stopps 1:10:13
Yeah, it’s like, the last two years didn’t happen.
Bill Gasiamis 1:10:17
Yeah. I Imagine what that’s like. One of the biggest challenges with me, helping people get through stroke is often struggling with the, you know, what do we tell people about, you know, how do we bring information to people, you know, things that we talk about getting doctors to talk on the podcast, it’s almost impossible. People don’t want to, yes, that kind of stuff, which is strange that you can get people to talk about it.
Bill Gasiamis 1:10:47
But I understand all the medical implications of that. What I loved was when you reached out and said, Can we tell the story of what my experience was with a teleseminar? And I thought, that’s something that we’ll need to do, it’s going to make a big difference to a lot of people listening about whether they go or don’t go.
Bill Gasiamis 1:11:07
And whether they like you they want to know, yes or no, did it work, or didn’t work, and that they’re gonna go after recovery, I want to encourage people who are listening to go back and listen, a couple of times get comfortable with the process that Andrew had to go through.
Bill Gasiamis 1:11:28
Understanding the implications of going there, the potential results that you might or might not get the funding, the cost that’s associated with this, and how to go about raising those funds is really important. And, and that’s, that’s about it for me, like, I appreciate you reaching out and sharing this story, because it was a gap in the knowledge base that was there that people were asking me about, and I couldn’t deliver them a piece of content that had at least one person’s version of events. And then sort of dispelled some of those myths as well.
Andrew Stopps 1:12:10
Yeah. Because the only videos you can find are the ones that are done on their website. And so and so it’s, for me, it’s important to talk about this to people and to answer questions and to, you know, to be valuable to be a resource because, you know, I’m not sitting in the, in the treatment room now and having a video done. I’m like, just I’m talking to you. I’m telling you exactly what it was like for me. And I wish that was available to me when I was trying to make a decision.
Bill Gasiamis 1:12:43
Let me just say, not that we have to this is not a paid endorsement, we are not doing a plight or the clinic or anybody like that we are two stroke survivors or one who was curious enough to go ahead and get that procedure done. And one who’s curious, because I want to get information out to people and give them something to consider. And even thinking about it for myself.
Bill Gasiamis 1:13:11
That’s the other interesting part of this, you know, is that for me, it’s a really important conversation, because I need to consider the possibilities of how this might support me. That’s one thing I haven’t asked you is, is it a procedure that can be done? For anybody who’s had a neurological injury? Does it have to be a stroke survivor? Does it have to be ischemic stroke or hemorrhagic stroke? Do you know anything about that?
Andrew Stopps 1:13:38
Yes, the type of stroke, it doesn’t matter if there’s inflammation caused by it, and it’s going to help with other brain injuries. I think they do do other brain injuries if you’ve got inflammation. This drug’s going to help.
Bill Gasiamis 1:13:56
Yeah. Excellent, man. Congratulations. Thank you for coming on and sharing that I appreciate it. And I wish you a great recovery and continued success. Well done.
Andrew Stopps 1:14:10
Thank you very much. Thank you. It’s been really good talking to you.
Bill Gasiamis 1:14:13
Well, thanks for joining us on today’s episode. This was an episode that I’ve been wanting to do for a very long time. Many people have contacted me and asked if I knew anybody or had understood what it’s like to receive Etanercept. Now that you’ve listened to the interview, I encourage you to do your research, make up your mind, and understand fully what it is that you might need to go through to consider the possibility of requesting the procedure from Dr. Tobinick.
Bill Gasiamis 1:14:54
This is not a paid endorsement of the clinic. I do not suggest that anybody listens to any of this information on the podcast and takes my advice or Andrews’s advice. Please do your research and investigation and make your own decisions. And hopefully what this has done is just given you some things to consider. And some things to understand that you didn’t understand before.
Bill Gasiamis 1:15:23
So, for everybody, listening, if you liked this episode, please do hit the like button, share the episode, let other people know about it, and get the conversation started, because that’s what we need more of, we need to hear more about the solutions that are possible for stroke survivors. And this might make a difference to somebody else’s recovery. If they can find this interview.
Bill Gasiamis 1:15:50
And listen to it, it might improve their quality of life, it might allow them to get back to work, it may allow them to get through recovery a little bit better. Thanks to everybody who always tunes in, listens leaves comments, and reviews, the podcast lives and thrives because of the reviews that people leave, whether it’s on Spotify or iTunes. So if you’d like to leave a review, please do go ahead and leave a review and some words about what the show means to you.
Bill Gasiamis 1:16:23
The show is growing, I get feedback from people every single week about what the show means to them what it was like when they discovered the show, how it made a difference in their recovery, how they don’t feel alone, and how they feel understood and feel like they found the community. And that’s exactly what I was I was trying to achieve. So I hope you enjoyed this episode. And I look forward to seeing you on the next episode. And I am truly grateful and truly and deeply appreciate everybody who listens and interacts and contacts me and leaves comments. Thank you.
Intro 1:17:03
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. The opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed in all content on this website at any linked blog, podcast, or video material control.
Intro 1:17:24
This website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis, the content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice the information is general and may not be suitable for your personal injuries, circumstances, or health objectives.
Intro 1:17:48
Do not use our content as a standalone resource to diagnose treat, cure, or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional.
Intro 1:18:11
If you are experiencing a health emergency or think you might be, call 000 in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department. Medical information changes constantly. While we aim to provide current quality information in our content.
Intro 1:18:27
We did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency, or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with the links we provide however third-party links from our website are followed at your own risk and we are not responsible for any information you find there.
The post Etanercept for Stroke Recovery – Andrew Stopps appeared first on Recovery After Stroke.
Comprehensive Guide to Brain Arteriovenous Malformation (AVM) Recovery and OutlookUnderstanding Brain Arteriovenous Malformation (AVM)Brain Arteriovenous Malformation (AVM) is a rare condition characterized by abnormal connections between arteries and veins within the brain, bypassing the normal capillary system. This condition poses unique challenges due to its location in a critical organ like the brain, leading to potential complications such as hemorrhage, seizures, and neurological deficits.
Initial Stages of Brain AVM RecoveryPost-Treatment Care for Brain AVMFollowing treatment for brain AVM, meticulous post-treatment care becomes paramount. Patients must strictly adhere to medical recommendations, including prescribed medications, lifestyle modifications, and regular follow-up appointments to monitor recovery progress and address any emerging issues promptly.
Physical Rehabilitation for Brain AVM Patients
Physical therapy plays a crucial role in aiding brain AVM patients during recovery. Rehabilitation programs tailored to the specific needs of each patient focus on restoring mobility, coordination, and strength. These programs are designed to address any neurological deficits and improve overall functional abilities.
Factors Influencing Brain AVM RecoveryLocation and Size of Brain AVMThe location and size of a brain AVM significantly influence recovery outcomes. AVMs situated in critical areas of the brain may present greater challenges and require specialized treatment approaches to mitigate risks and optimize recovery.
Treatment Modalities for Brain AVMThe choice of treatment modality for brain AVM, whether it’s surgical resection, embolization, or radiosurgery, plays a pivotal role in determining recovery prospects. Each treatment option carries its own set of risks and benefits, and the selection depends on factors such as the size, location, and characteristics of the brain AVM, as well as the patient’s overall health and preferences.
Long-Term Outlook and Prognosis for Brain AVM PatientsRisk of Recurrence in Brain AVM RecoveryDespite successful treatment, there remains a risk of recurrence in brain AVM cases. Regular monitoring through imaging studies is essential to detect any signs of recurrence early and intervene promptly to prevent potential complications.
Quality of Life After Brain AVM RecoveryThe quality of life post-treatment for brain AVM patients varies depending on various factors, including the success of treatment, the extent of neurological deficits, and overall functional recovery. Many individuals can resume their normal activities with minimal limitations, while others may require ongoing support and rehabilitation to manage persistent symptoms and optimize their quality of life.
Importance of Psychological Support in Brain AVM RecoveryIn addition to physical rehabilitation, psychological support services such as counseling and support groups play a vital role in brain AVM recovery. Coping with the emotional and psychological impact of living with a brain AVM and undergoing treatment requires comprehensive support to address anxiety, depression, and other mental health challenges.
Conclusion: Optimizing Brain AVM RecoveryIn conclusion, optimizing recovery and outlook for individuals with brain Arteriovenous Malformation (AVM) necessitates a multidisciplinary approach that addresses the unique challenges posed by this condition. By prioritizing post-treatment care, physical rehabilitation, and psychological support, brain AVM patients can achieve optimal recovery outcomes and lead fulfilling lives post-diagnosis and treatment.
The InterviewMonica Azevedo was 29 when she experienced a brain hemorrhage because of an AVM that required gamma knife surgery to resolve.
Highlights
00:37 Introduction
00:59 The Brain AVM and symptoms
08:53 Deficits after the brain AVM
11:49 Brain AVM recovery with aphasia and cognitive difficulties
17:28 The importance of emotional and mental recovery
26:44 Transforming life after a stroke
33:36 Being at the right place at the right time to have a stroke
44:44 Career growth, overcoming obstacles, and finding gratitude
51:15 Bill’s lessons and hindsight from the stroke
56:44 The hardest thing about stroke for Monica Azevedo
59:28 What Monica Azevedo learned from her stroke
1:06:28 The importance of having a proper diet
Transcript:
Bill Gasiamis 0:00
Hello, everybody. My book about stroke recovery tells the story of 10 stroke survivors and the steps that they took that got them to the stage in their recovery. Where from a personal growth perspective, stroke transformed into one of those life experiences that on reflection was filled with many opportunities for growth and personal transformation.
Bill Gasiamis 0:22
In the book, there are chapters on nutrition, sleep, exercise, how to deal with the emotional side of stroke, tips and tools for mental well-being, and much, much more to find out more and to get your copy, go to recoveryafterstroke.com/book.
Introduction – Monica AzevedoBill Gasiamis 0:37
This is episode 296. My guest today is on the road to recovery after a brain AVM bled into her brain when she was age, just 29 Monica as Aveda. Welcome to the podcast.
Monica Azevedo 0:51
Thank you. Thanks for having
Bill Gasiamis 0:55
Tell me a little bit about what happened to you.
The Brain AVM and symptomsMonica Azevedo 0:59
Yeah, so long story short, I had a stroke on February 2 of last year 2023. And it changed my life and I’m doing a lot better now. But I’m still recovering. So essentially I had a hemorrhage stroke, where I had a bleed in my brain. And we found out it was because of an AVM in the brain that ruptured. So yeah, I’m not sure how far back and how many details.
Bill Gasiamis 2:03
Let me guide you don’t worry about it. So you have an AVM you find out the first time when it bleeds. Looking back now did you have any symptoms? Any idea that maybe there was something not right, something a bit weird about your head? Did you get strange headaches before? Did you have any inkling whatsoever that something was a little bit off?
Monica Azevedo 2:28
Not at all, complete shock. And it’s funny because I’ve had a couple of concussions in high school. And that didn’t do anything or at least, you know, let me know that I had potentially this AVM in my brain. So I consider myself lucky because all the symptoms were fairly, you know, quick and I got help fairly quickly as well.
Monica Azevedo 3:07
So I was working a lot and I had just finished my shift, it was a Thursday. And I left work, I went to grab my car. And I went I pulled up in front of the office, my boss and I were unloading my car because we just had done it at a trade show for the company. And I said goodbye and hopped into my car.
Monica Azevedo 3:48
As soon as I pulled out and started driving I got this sudden, headache, very sharp pain at the very front of my head and I was like whoa, like kind of taken aback because this kind of came out of nowhere. And then within seconds, my vision becomes blurry.
Monica Azevedo 4:14
And I figured okay, this isn’t good. So I think to myself, pull over immediately. I put all my hazard lights on I put my car in park and funny enough I’m from Toronto, and there are billboards up around and I remember always reading this one that had the acronym FAST. I think it’s like if your face is drooping. A like your arms and S for speech and then time to call.
Monica Azevedo 4:57
So I instantly thought to myself can you raise your arms and I couldn’t even like, raise my arms more than halfway. So I knew something like I needed help. So the first thing I did was think I was going to call my boss because he’s probably the one person who can get to me the quickest.
Monica Azevedo 5:25
And figure out what’s going on, I call him. I said, Hey, I’m not feeling good please come get me. And then, you know, from here on now, this is what I’ve been told, because as soon as I called him, he said he was coming. I blacked out. And then I remember coming to again for a second and I see him in my vehicle calling I guess, 911. And then blackout again. And I don’t remember anything for two weeks.
Monica Azevedo 6:04
I was in the ICU, they found out that I had a bleed in the brain almost immediately. And yeah, I had a breathing tube. And I, apparently had thrown up all over myself when this first had happened. And yeah, it was I was rushed to the hospital. So I was I’m very, very grateful that he was there to jump in and call 911 for me. Because, again, the symptoms were so sudden and so powerful. And it happened so fast. I barely had time to react. Yeah.
Bill Gasiamis 7:03
You’re you’ve got sort of this two-week period of time where everything’s lost, I imagine you would have been in some kind of an induced coma that would have been trying to stabilize the bleed, trying to sort it out, etc. Did you have family notified Was anyone by your side during that time to remember who was there when you woke up?
Monica Azevedo 7:26
Yeah, so my boss said, his name is Jamie. And he called, I believe, my parents and one of my girlfriends. And it was the two numbers he had, I think, and I’m not sure maybe he called my partner but he called who he could. And so, one of my good friends, Tara, she was the first one to get to the hospital and see me and she thought, you know, okay, well, this is a little bit more serious than I thought.
Monica Azevedo 8:14
She told my parents like, no, like, you need to come to the hospital. So all my close girlfriends, my parents, my brother. You know, bless their hearts. I have a great support team, and they’re all there. And yeah, I guess it’s still not clear to me exactly what had happened. You know, during when I was in ICU.
Bill Gasiamis 8:47
Are they all living locally, and are they all near you?
Monica Azevedo 8:51
Yeah, they are.
Deficits after the brain AVMBill Gasiamis 8:53
And it’s been 12 months, the anniversary of this time has just passed, right? So in those 12 months, what did you have to overcome? What deficits Did you wake up with after the surgery? After the hospitalization?
Monica Azevedo 9:10
Yeah, so I had like, a tube out of my head. So we ended up putting a shunt in because, during my hospital stay, I was at the hospital for about three to half weeks in total. I moved into a rehab center which helped a lot but during my hospital stay I guess they were trying to drain or let my body drain the fluid out of my brain on its own, but I couldn’t and whenever they I guess tried to let me do it on my own.
Monica Azevedo 9:56
Like those were times I kind of recall some of them. And some of them I don’t. But like, I would talk crazy like I was not making sense. The stories I hear from my family and friends are pretty funny. Scary, but funny. Now that I look back at it.
Bill Gasiamis 10:22
Did you have problems walking or using any side of your body or anything like that?
Monica Azevedo 10:26
The right side of my body was quite numb, tingling, and hard to use, I had to walk and learn how to walk again, so I used one of those walkers. And I had like my shoulders up to my ears I was so frigid. It affected my left eye. So I have what you call a strabismus or lazy eye.
Monica Azevedo 10:53
And it’s also affected the pupil. So the brain is amazing. But at first, it was like I had a double vision I am I couldn’t see anything, everything was messy. And then I just kind of adapt because essentially, what the brain is trying to do is, is create like, there’s two images, and they’re trying to blend those images. So it’s just one.
Monica Azevedo 11:31
So, I can see a lot better. But I’ve had to adapt. I had to learn how to walk again, I had to kind of gain strength on my right side. So physiotherapy was a big help.
Stroke recovery with aphasia and cognitive difficultiesBill Gasiamis 11:49
How are you functioning verbally? And how you’re thinking? My assumption is, I’ve never met you before. So I’m assuming that everything is the way it’s always been. But are you having any difficulty with developing thoughts, finishing sentences, or starting a conversation? Do you have any of those dramas, things that are different than the way that you used to communicate before?
Monica Azevedo 12:14
Um, in the beginning, it was fairly difficult. I was kind of lost for words. But I’ve improved quite a lot. I have little trouble with short-term memory. But you know, I’m trying to work on my vocabulary. Again, I’m trying to talk more, read more, and challenge myself. So, you know, I’ve seen a couple of speech therapists. And luckily, that hasn’t been the case for me. I haven’t had a deficit in that regard.
Bill Gasiamis 12:59
And how about your energy levels? What about the way that you feel throughout the day? How energetic you can be how many things you can get done? How was that? These days? A
Monica Azevedo 13:11
a lot, a lot better now, a lot better now. So something that I struggled I was a lot mentally. My mental health was I was in a dark place for sure. Physically, now I gained 40 pounds. And within six months, I had to shave my head. So because they shaved half of my head for the shunt and this drain there they put in I had a little bit of an identity crisis because I didn’t recognize who I was in the mirror. Like I’ve gained weight my eyes weird to me. I’m I’ve shaved my head. And I forgot the original question. I don’t know where I’m going with this.
Bill Gasiamis 14:16
It was about it was about like how else you’ve been impacted? And you’ve answered the question beautifully said so fine. Yes, I was gonna say about your mental health. So were you somebody that perhaps had mental health challenges in the past, for example, my major, A minor, you don’t have to talk about any of this stuff. If you’re not comfortable, major or minor in that. Did you have baby anxiety or anything like that? Or was this all-new, or onset after your brain injury after this traumatic injury?
Monica Azevedo 14:48
I’ve always dealt with things with anxiety. So that wasn’t, you know, new for me, but yeah, a lot of it was new to me, I guess I guess. Like I have never, you know, experienced depression the way that I did last year. When I think back, I get emotional sometimes. Because I think I’ve come so far, you know, I’m, I’m doing so well. Considering I had a stroke a year ago, and I’m damn proud of myself, but it was hard.
Intro 15:42
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind, like, how long will it take to recover? Will I recover? What things should I avoid? In case I make matters worse, doctors will explain things that, you’ve never had a stroke before, and you probably don’t know what questions to ask.
Intro 16:07
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called Seven Questions to Ask Your Doctor about your Stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery, head to the website. Now, recoveryafterstroke.com. Download the guide. It’s free.
Monica Azevedo 16:45
It’s really hard. And I think mentally is where I had the biggest challenge because and you know, because physically I couldn’t do the things I wanted to do. And whatnot.
Bill Gasiamis 17:03
Physically is where the effort goes, people see that immediately. They see you can’t walk, and they put you into therapy and you’re supposed to improve or you’re walking. And I think it’s a really important part of recovery. And then if you can regain some of your movement that might support your mental health a little bit, your emotional health.
The importance of emotional and mental recoveryBill Gasiamis 17:28
But then the Emotional Health and Mental Health still require a lot of time and effort as well, just like the physical recovery, but very rarely do as a medical professional, you should go into six months of counseling or six months of therapy, they don’t do that unless somebody is proactive, says that to you. And then you have the idea that maybe psychological counseling, or emotional counseling is something that you need to do.
Bill Gasiamis 17:58
But a lot of stroke survivors don’t go down that path. They don’t think about it. Because they also look at the physical side of it. And then they go, Well, if only I could walk or if only I could use my arm or and then they put all their energy and focus into that, which makes sense. It’s logical. But strokes are a three-pronged recovery, you can’t just recover the physical and not pay attention to the emotional and then not pay attention to the mental. Because your, your thinking gets clouded. I know for me, it got clouded.
Bill Gasiamis 18:30
I’m thinking thoughts I had never thought before. Which, on reflection, it all makes complete sense. It’s logical that somebody who was perfectly healthy for 37 years, and now seems not to be and doesn’t know what the future holds, is going to have new thoughts about life and new thoughts about the world and new thoughts about work and the family and what it means to be alive and all that stuff.
Bill Gasiamis 18:57
So it’s pretty standard and obvious that you might initially after the stroke, have depressive type of thoughts and feel a sense of doom and gloom and and then get depressed, right? It’s pretty logical because something bad has happened. The thing about it is to help you to help you get through that is to observe it and to try and understand why you’re thinking those thoughts.
Bill Gasiamis 19:24
And to come to terms with the fact that you’re thinking of them and that it’s okay that you’re thinking of them and under the circumstances is understandable that you might be thinking of them. And then it’s about how you tried and transform those thoughts and get a little bit of what is it. I would say a little bit of control back because I felt out of control when it happened to me.
Bill Gasiamis 19:48
Everybody else was in control of my life. The doctors. You know the bleed was in control of my life. I mean, maybe God was in control of it. I had no idea what was happening, I was just along for the ride. But then I start making some small decisions and take back a little bit of their control where I can. And it’s usually in areas like, like what I’m going to address like, what is it that I’m going to address?
Bill Gasiamis 20:14
Like, Ah, okay, I’m going to address my mental health, I’m gonna go see a counselor, I am going to address my emotional problem, where I’m crying all the time, and I don’t know why. And then it’s like, I have I had also put on weight. So okay, I’m going to address my weight issue. And we’re going to stop consuming sodas or stop consuming sugar, for example.
Bill Gasiamis 20:38
And then as you do that, even though other things are out of your control, what happens is you take a little bit of control, and then you start to feel better about the fact that you’re playing an active role in keeping yourself healthier and avoiding another incident. But of course, I know that with ABMS often, the situation doesn’t just resolve when you get sent home, the AVM is still there often if they haven’t operated immediately.
Bill Gasiamis 21:08
So for me, it was there for three years almost after the first bleed, and played three times in total. And then we had surgery. So the first year I was in the kind of feeling better mode, things are getting better, but there’s still this unresolved matter. What situation are you in with your AVM?
Monica Azevedo 21:32
Yeah, so I still have my AVM which kind of scares me a little bit because there’s always that risk factor. Right, that is a potential re-rupture. And so yeah, it’s inoperable because it’s located at the back of the brain, but like, the way they describe it’s almost in the center of the brain because it’s very deep inside would be difficult for them to operate.
Monica Azevedo 22:09
So we did the gamma knife radiation treatment that the students experienced. And that was done about nine months ago. I have my MRI, then of this month, finally, to see how she’s doing. I call it Felicia, because it’s like, you know, Bye, Felicia. Like, you’re not welcome here anymore. Like, please, go.
Bill Gasiamis 22:51
Humor is so important.
Monica Azevedo 22:54
Yeah. So try to keep things light, right? I’m hoping for good news.
Bill Gasiamis 23:03
Okay, so a friend of mine, who I went to school with, who I harassed for his entire life. I’ve known him for 44 years. He went to school with me, I did the best I could to keep him out of studying to keep him out of doing well, to get him to be an idiot like me as much as possible, you know. And he went to university and I didn’t because University wasn’t for me, I had learned everything by the time I was in year nine or something like that.
Bill Gasiamis 23:40
So he went to university and became a radiographer. And the type of guy who when you go to a hospital and get a scan of your head, he’s the type of guy that does those scans. So when I was unwell, he was at the hospital that I was going to, and he was the guy that was scanning my head, and he would see me at every appointment. And I’ve known this guy my entire life, we’ve kept in touch, like since school finished.
Bill Gasiamis 24:08
And we went through this together and he would speak to my wife and he would reassure us but for three years, you know, he was on the case for me. And then he was the person who introduced me to my neurosurgeon who eventually did the operation. And then he was there. When I was recovering. He was all over the place like he was just amazing to have around is awesome.
Bill Gasiamis 24:10
And then I think 12 months ago, roughly about 12 months ago, a similar time to you. His daughter had an AVM she’s 17 years old and bleeding in the brain. Really difficult spot to get to the draining of the fluid. I go and visit him. I’m in the ICU with him. She’s on ventilators the whole lot. And now she’s up and about and she has some left side deficits that are kind of still impacting her, but it was touch and go just like you.
Bill Gasiamis 25:06
And she had the gamma knife surgery as well, the procedure. And what I understood that the gamma knife does is that it kind of zaps that area where the AVM exists. And it alters the DNA of the AVM. And the whole purpose of it is once it alters that DNA, it kind of stops it from working properly, and it shrivels it up. And then Felicia is no more.
Bill Gasiamis 25:35
And that’s the time that they’re in now. They’re also in that waiting zone, they’re waiting for the next MRI to have a look and see what happens. Hopefully, the results are in their favor and then they move on and go to the next stage. But it’s a difficult time for everybody who’s had an AVM to go through that. And I appreciate what you’re going through.
Bill Gasiamis 26:00
It’s just so ridiculously crazy that I had to go through what I went through, my friend had to help me, and his daughter had to go through that. And now together we’re going through this. And we can empathize with people who have had a stroke bit from a brain injury, bit from an AVM break from a blood clot. It’s a lot of waiting around and being patient, I imagine that it’s not something that you had practiced too much before being this patient about something that you’re that sort of motivated to get the right outcome for how is that new experience to deal with?
Transforming life after a brain AVMBill Gasiamis 26:44
How do you stay calm and relaxed and chilled the way you are? Because you appear very level-headed. You know, you’ve contacted me to be on the show. You’re presenting yourself as calm and calculated. Are you? Is that a facade? Because people listening who are going through what we’ve been through will be curious, like, are you not human? How do you do that? How do you live with that?
Monica Azevedo 27:16
I am cool, calm, and collected. And I’m kind of an introvert. But I know how to turn it on if I have to. Yeah, I’ve just always kind of been like the quiet more reserved, and observe-the-situation type of gal and yeah, it’s training yourself to have more positive self-talk as well, right? It’s so easy for me and for I’m sure anybody to kind of look at themselves and easily say, Oh, I don’t like my hair today.
Monica Azevedo 27:29
Or oh, I don’t like this outfit on me or, whatever it is, right? But yet, it’s not easy for us to tell ourselves. I am. You know, I’m smart. I’m courageous. I’m creative. And the list goes on. Right. So I just tried to practice gratitude. I tried to give, say daily affirmations. So sometimes it’ll be different every week. And yeah, and I just kind of say to myself, I’ve also journaled too.
Monica Azevedo 28:49
I think that’s helped quite a bit with processing this, but um, patients patients. It’s something that I’ve had to learn. I think you know, I know like you’re the I think the title of your book is like it stroke was the best thing that’s ever happened to me something along those lines and it’s interesting to say that only now I can say that yeah, I think I can agree because it you know, I quit some really poor habits that weren’t serving me anymore.
Monica Azevedo 29:33
I have more confidence in myself now and I truly see how short life can ultimately be I want to enjoy it and I don’t want to be miserable. I want to be happy and not allow things to bother me as much as they once had before.
Bill Gasiamis 30:00
Yeah, I love that. See, that’s the thing about my book title. It’s unexpected, it caught me off guard by surprise, as if the worst thing that ever happened to me, could become the best thing that ever happened to me, let’s face it. Now, I know people will say that some things are way worse than stroke that they’ve had happened to them.
Bill Gasiamis 30:23
Therefore, stroke doesn’t even mention it. So it just depends on your life, and what your experiences have been so far, and all that type of thing. And it just depends on how well I considered myself pretty dumb before the stroke. And I say that in the most caring and loving possible way.
Bill Gasiamis 30:43
Because I was not wise to the world, I had a way of doing things that was, in my mind, the only way of doing things and it was so not aligned with my way of being it was just like somebody else’s rules, I was implementing somebody else’s strategies and, and things and I was getting a lot of pushback, and I didn’t like it.
Bill Gasiamis 31:08
And it was really difficult to be myself. And then I’ve had this stroke, and then it stops and pauses everything. And I’ve got to change everything because I’m a completely different version of myself. And I need new tools. So I go and seek them out. I find tools that serve me are not difficult to implement and are enjoyable to do.
Bill Gasiamis 31:31
And I get a lot back from them, like gratitude, and like public speaking and all that kind of stuff. And then I’m like, I never would have discovered this stuff, if it wasn’t for all this health scare that I experienced and all the challenges that I’m facing, and I have to overcome. So its growth has happened, it had to get to this dark place, it had to get to rock bottom.
Bill Gasiamis 32:00
But then, it was just growth because I knew that I didn’t want to get to rock bottom ever again. Which meant that I couldn’t go about life the way I was going about life before you just if I did, if I did, that would get me the wrong outcome. And I’m not particularly happy with that outcome.
Bill Gasiamis 32:19
And now that I’ve had a taste of this new version, even though I’m living with deficits, even though my left side has been in pain for about three or four days now, even though you know, it’s bugging me, and I’m noticing it more and my balance is off. I have a podcast, I’ve met all these people, and I’m doing a book launch in a few weeks. It’s like, how can it not be the best thing that happened to me?
Bill Gasiamis 32:47
And I expect people will not be at that stage yet. And I’m perfectly comfortable with that. What I’m doing is trying to say to you, like if strokes, the worst thing that happened to you? How can you despite that, transform it regardless of how bad your deficits are, regardless of how bad your vision is, your memories, or that kind of stuff, how can you transform it into something that enables you to experience a part of life you had never experienced before? That’s amazing. Like you nearly died. So pretend you’re already dead, like fuck it, like and just go for it and do something that the old you who was supposedly alive, never would have done.
Being at the right place at the right time to have a strokeMonica Azevedo 33:36
Amen. Yeah. 100%. Because it’s kind of strange to say, to say that, you know, you almost didn’t make it because, to me, I’m thinking like, I’m here. What do you mean, and I didn’t make it, but it’s true if I hadn’t gotten the help right away, like, who knows what the outcome would have been if you know, I say I had a guardian angel watching me because everything almost fell in place.
Monica Azevedo 34:14
Almost too perfect to help my situation. It was like it was it was gonna happen regardless. But you know, like, again, my my, my symptoms happen quickly and continuously and I didn’t have a moment to react right? Where some people I know you know, started stirring in the morning and then they go throughout the whole day and they may be been having this mini-stroke throughout the day and they weren’t even aware of it and it caused so much damage.
Monica Azevedo 34:53
And again, depending on where the AVM is located on the brain, it affects different parts of your body. It’s just, that there’s so much depth to all of this and everyone’s experience is not like any other. You know, I tried to seek out, you know, anyone else who had their eye affected from stroke, or AVM or what have you and, and it’s I find it so difficult to find anyone else who had an issue with their eye specifically, you know, I’ve had people I could relate with the shunt and, and some parts of my experience.
Bill Gasiamis 35:40
Well, on my Instagram page, there are a ton of people who have had me make posts specifically about vision, and people have responded. So if you go there and you scroll through, and you see the posts that are about vision, you’ll see there are people there. And anyway, if you wanted me to I could ask, and I can let the people following on Instagram know that Monica wants to connect with some people who have had vision problems after a stroke. Would you guys be willing to connect? And let me tell you there’s gonna be a few.
Monica Azevedo 36:17
Yeah, yeah. I would love that. I would, I would love to, you know, connect with anyone else who? Yeah, cuz I feel like that’s kind of like the missing piece a little bit up. I just haven’t come across anyone who talked about their eye being affected.
Bill Gasiamis 36:41
I was just gonna say how much does it bug you that your eye is affected in that way? What does it stop you from doing? Or what does it do to you?
Monica Azevedo 36:56
Now it doesn’t stop me from doing anything. So that’s great. It’s been an adjustment. It caused a lot of headaches, balance issues, and almost not knowing where you are in space, almost. It’s just a weird experience. And confidence-wise, you know, just looking at my reflection in a mirror and not seeing my eyes, you know, being the way they used to be.
Monica Azevedo 37:34
And yeah, so I was supposed to have the eye surgery. strabismus surgery. So it’s been going to help kind of align my eyes again. So the physical part of it will be fixed. But the visit again because my pupil was affected. I don’t know if it’s gonna fix the vision aspect. But we’ll see I have it rescheduled for next month. So I have a lot of things coming up, right, like the MRI, and eye surgery. And we’ll see what the next steps are for me.
Bill Gasiamis 38:19
Do you need to go and grab some tissues? Do you need to get some water? You seem like you’re a little. bit runny? Yeah,
Monica Azevedo 38:32
I get emotional sily. So I I’ll tear up here and there.
Bill Gasiamis 38:39
Yeah. Understand I’ve been there. Most people listening have been there. So have you been to a neuroophthalmologist, or you’re going to just the regular eye doctor, a neuroophthalmologist usually deals with eye challenges related to neurological issues. Who have you been seeing for your eye? What kind of a?
Monica Azevedo 39:05
Yeah, so I was I saw a couple of ophthalmologists. This specific ophthalmologist focuses on strabismus. So a lot of these patients are typically children. But he said he’s had, you know, a couple of a few adults in his career and, and, and it was due to like a neural neurological issue. So, yeah, he’s confident that he can help me and because I made it very clear that you know, I don’t want to go into this surgery if you don’t think there’s going to be a significant difference or improvement.
Monica Azevedo 39:58
Because that like I think I’ve adapted to what it is now. And I’m not, you know, half-b, but I can deal with it. You know, like the headaches, the daily headaches are gone. I balance is great. I’m back to the gym. I’m, you know, I’m doing all the things that I love doing again. So if it’s not going to improve what I’m at right now, like I, this is the baseline. I’mbackwardg backwards. I’m going forward.
Bill Gasiamis 40:44
That makes sense. 12 months just passed. Is thamonthsst 12 months? Was it? Anniversary? Was it a celebration? Was it a time of reflection? Did you either evputsort of did it into your mind? How did you guys do that?
Monica Azevedo 41:04
Yeah, you know, the first anniversary was definitely on my mind, I did reflect. And it was very emotional. And my girlfriend, you know, had had us over for dinner. We had low dinner together and kind of celebrated, you know, recovery for the last year. And then yeah, it was, it was a special day. And I just want to kind of create new and better memories for that day, because, mind you before the stroke, February 2 never meant anything to me. Okay, now, like, well, kind of needs something, right? So you make your what it is right?
Bill Gasiamis 41:56
So weird that we do that. I mean, if a calendar didn’t exist, we wouldn’t have a clue that a year had passed Exactly. That it was that they were just so strange. You know, we’ve been, I think we’ve been trained to mark anniversaries for some reason. Like, whether it’s, you know, wedding or getting together anniversaries, or whether it’s birthday anniversaries, or whether it’s the anniversary of somebody passing or whatever.
Bill Gasiamis 42:25
And, you know, we’ve been trained to remember that, this day, 12 months ago, this thing happened. And like, we now have to remember it for some reason and do something about it. And I feel a bit weird about marking anniversaries, but in a positive way, like you’re trying to bring, like a positive spin on it and say.
Bill Gasiamis 42:50
Well, if I am going to mark the 12-month anniversary, I’m going to mark it and say, look how far I’ve come, or this is what I’ve learned, or this is how I’ve grown, or this is how I’m better or different or whatever rather than re-traumatizing myself with what happened on that day. And then, you know, it being something that I have to get over again and over common, I don’t know. I do wonder why it is that humans have to mark anniversaries.
Monica Azevedo 43:34
Yeah, it’s interesting. You know, because you can’t expect everyone to remember, you know, this day, this happened to me. And why do we do it?
Bill Gasiamis 43:51
And why 12 months and not 13 or 11?
Monica Azevedo 43:54
Yeah. Because, again, it’s the calendar year, right? The calendar years for 12 months? Yeah. I guess it’s something it’s something to, you know, you can have a great debate on because you know, why celebrate your birthday every year, right? It’s because you get older, right? But it’s something I think of positively. No, it’s a way to celebrate and create new memories. And if you want to celebrate the damn thing, go ahead, you know, and if you don’t, you know, it’s your choice at the end of the day.
Bill Gasiamis 44:30
Yeah, I love what your friend did. For you. That’s a really lovely thing to do to sort of bring you guys together and make you feel cared for and looked after and thought of.
Career growth, overcoming obstacles, and finding gratitudeMonica Azevedo 44:44
Yeah, I have very special friends. They’re very, very close and dear to my heart. I’ve known them forever, basically, and my partner and my pair of friends and my family, just everyone close to me, has been so supportive and so amazing. And I truly, you know, recognize that friends and family are so important. And I, I anytime that I have, you know, again, because I’m an introvert, I like some alone time, because that’s how I recharge my batteries. But otherwise, my free is being spent with my friends, and family, my career that I’m trying to build.
Bill Gasiamis 45:39
Yeah. Tell me about your career. What are you trying to build?
Monica Azevedo 45:47
I don’t know if I want to go into it in depth, but I’ve been working for this company. And they’ve been so supportive during this entire journey. Because, you know, when the show happened, I wasn’t working for a little bit there. But they, you know, they were like, Nope, we understand we see what’s going on, come back when you’re ready. And I came part-time a part-time basis, to kind of ease my way back into it.
Monica Azevedo 46:24
I did that in August, so six later. Anen I liworkedlowly work my full-time full time. And, it’s nice to, you know, to have a sense of routine back again, you know, and wake up before I would wake up for work and be like, Oh, I hate this, I was so miserable. But now like, Oh, I get to wake up and I get to go to work. And then I get to go to the gym after and do all these other things. And, you know, make the best of it. Some days are harder than others it changed my perspective on a lot of things.
Bill Gasiamis 47:15
You were like every other normal person who hates waking up in the morning and going to damn work.
Monica Azevedo 47:22
Yeah, you know? I mean, if you’re waking up miserable going to work, then maybe you need to change your career.
Bill Gasiamis 47:31
Yeah, for sure. That was me. I mean, going to work. miserable. As my boss, I was creating two my pain and suffering because I was like I said, I was quite thick and dumb about the way I went about things. And I remember whinging and moaning about how hard it was to be me and to run my business and to get the guys to do what I needed them to do.
Bill Gasiamis 47:56
And my customers needed me to be there all the time. And if they didn’t see me, they wouldn’t want to work with me. And it was all these bullshit stories that are created in my head about why I couldn’t grow my business and why I couldn’t do this. And I couldn’t do that. My office, I didn’t have one home, I was working from home.
Bill Gasiamis 48:17
And who would have known that you know, 12 years later, working from home is the thing?to do. Right? And I was just so, so oblivious to the fact that I was working from home, but it was working. I thought that I needed to work from some other location to make our work better or some ridiculous thing. And then and then I found myself working from my hospital bed.
Bill Gasiamis the 48:46
So first time the I was in the hospital for seals, I got a laptop, I got a photo of the laptop on the food tray broughtthey bring out. And I’m sending quotes, sending invoices, receiving emailing, email, emailing my clients, My guys are going to work. They’re doing the work the way that they need to do it. The clients are happy the clients are paying. Everyone steps up. It’s like, what just happened?
Bill Gasiamis 49:16
I went literally from one week before where everything was a problem. I was whinging to my wife about it. Everything was so hard. Because the business was prosperous and working well, and we were making money and I was busy. What I wasn’t doing was delegating putting new people on and taking some of the pressure off me. I was just taking it all on board.
Bill Gasiamis 49:39
And then here I am, literally a week later with a brain injury and I’m working from my hospital bed. It just blew all of my preconceived ideas and all of my thoughts about what success looks like. It just blew that blew it out of the water and it was the most obvious that would hit Me, harder than the stroke hit me the blood in the brain hit me when I was in the hospital, probably on day three or four with my laptop and working away, I just couldn’t believe it.
Bill Gasiamis 50:11
And that was what sort of started this whole turn for the better this growth, this opportunity to sort of see things differently, to reach out to new people to learn new skills, new ways of thinking, new ways of applying myself. It was just, it’s just crazy that, that that’s how I got there, right. So my career became something that I got to do. And I’ve got to be at work, and I got to meet new clients, and I got to find new ways to solve problems. And then gratitude kicks in and it’s like, wow, look at me, like, this is so cool. And I can relate to what you’re saying a lot.
Monica Azevedo 50:51
Yeah, 100%. And, you know, it seems like you’re doing great, you know, after having, AVM ruptured three times and then have to go through surgery. And I couldn’t imagine what that is like, you know, once is enough.
Bill’s lessons and hindsight from the strokeBill Gasiamis 51:14
It is but it was easier. Monica, the reason why it was easier was because I had learned the lesson quickly, early on. And as I was healing and getting better, the next time it bled. What I had to do was overcome my illness, my brain issues, you know, with the blood in there, and all the stuff that was happening in there. Once I overcame that again and sort of started to get healthier and get better. Those lessons were still there, and I was able to capitalize on them again.
Bill Gasiamis 51:47
So the second time I capitalized on it again. And then the third time, it was like, Okay, I’ve had 18 months, I had nearly I think it was two and a half years by then of two bleeds recovery, and then played and then brain surgery. But I had two and a half years of putting new things into place new strategies, new brand procedures, and new ways of living my life. So it was kind of easier because I had new tools already developed. And that was what was good about it.
Monica Azevedo 52:26
Yeah, I’m sure that helped a lot because it still doesn’t make it easy.
Bill Gasiamis 52:34
It’s a bloody setback, blood-brain ain bled again. And now you have to have brain surgery. Now you have to learn how to walk. It’s a setback. And it takes a long time. And that’s one of the things I’m trying to demonstrate I don’t want to gloss over the fact that it took me more than seven years to get full-time time work, a long time.
Bill Gasiamis 52:55
And in that time, there were a lot of setbacks, a lot of setbacks, and I had thyroid surgery in that time as well. So 18 months after my brain surgery, had thyroid surgery because I had massive growth on one of my thyroid glands. So half of it’s gone. And then the adjustment that that does to your body and the hormones and your recovery from that.
Monica Azevedo 53:20
Yeah, because the AVM is not the only thing For most people I was diagnosed with rheumatoid arthritis, I think in 2019. And that was, you know, the symptoms I had it affected my foot and my knees and I couldn’t walk at one time, it was so inflamed, we had to drain out fluid and fit, find out which biologics work the best for my body.
Monica Azevedo 53:47
And so there’s, of course, you’re dealing with, you know, you’re dealing with recovery after stroke, and this AVM that, you know, may or may be existing in your body, and then you have other health issues to just put on top of that, right. So it’s just, that it can change again, like your perspective, and it provides the tools to better deal with those situations when they come.
Bill Gasiamis 54:23
Do you feel like you’re more resilient than you were? Have you always been resilient? How has your resilience level changed? Or the depth of it how is it sort of developed?
Monica Azevedo 54:40
Yeah, I think it changed since the stroke. To be honest. I was kind of carefree but didnly think about it. Some of my actions I guess, I don’t know, I I’m just far more grateful and just truly see the value of life and I just want to enjoy a while in here.
Bill Gasiamis 55:23
That’s profound. And that’s pretty cool.
Monica Azevedo 55:27
That doesn’t man. Like that’s, that’s all I can ask for. And, I mean, there’s like this quote that says, you know, when you die, people are gonna forget at after six months, and then after a year, like, no one mentions your name and you know, what’s left of you that people are gonna remember, you know, it’s going to be the memories that they have with you. So create those fun, amazing memories of the people you care about. And forget everything else forgetting forget other opinions. Like everyone has one, right?
Monica Azevedo 56:05
Just like assholes.
Monica Azevedo 56:12
Exactly. I’m like, I don’t know if I can swear.
Bill Gasiamis 56:16
A little.
Monica Azevedo 56:18
But, yeah, it’s been a roller coaster. But definitely, I feel like I’ve become stronger and more resilient. And just trying to do my best here.
The hardest thing about stroke for Monica AzevedoBill Gasiamis 56:45
That’s it? Why not? What has been the hardest thing about stroke?
Monica Azevedo 56:54
I guess, change in general changes uncomfortable. And I’m, I’ve never been a big fan of. So I think that’s been the hardest, just having to deal with the changes constantly.
Bill Gasiamis 57:15
Change thrust upon you. What is it about change that you’re not comfortable with? Is it just because of your personality? Or is it just because, you know, you like the status quo? What is it with change? Because I feel like I was similar. And now I’m not like, I don’t mind things changing on me now and being different all the time. What do you think was a difficult thing about change for you?
Monica Azevedo 57:44
I think some of the changes that I didn’t expect, like, I didn’t expect to have to shave my head, you know, I had long beautiful blonde hair. And, then I had to shave my hair. I was like, oh, that’s, that’s not a change. I was expecting it, though. That wasn’t something I wanted to do. But like it made the most sense. So I think it has a lot to do witonal cuz I know, change is inevitable and changes. Good. That’s how we grow. And I understand that now. Right? But it’s still uncomfortable sometimes.
Bill Gasiamis 58:36
Yeah. You kind of want it to be a little bit on your terms. Good time to deal with the decision that you’re going to make, for example, and understand how you could sort of be in charge of the change that it’s carrying, rather than it thrust the point it’s like resigning from a job rather than somebody. Second a similar outcome. Both of you end up without a job, but one of them is a decision you become comfortable with and you implement and the other one, someone just sort of pulls the rug out under your feet. And just says, say, you’re out here. What has stroke taught you?
What Monica Azevedo learned from her strokeMonica Azevedo 59:28
It’s taught me to not take things for granted and just really live life for yourself and not for anyone else. Don’t hesitate. Just do it.
Bill Gasiamis 59:47
Do you reckon you were living your life if not for somebody else, but through the filter of somebody else? I felt like I was doing that. As you know, people had told me how supposed to approach my work, but how was Ire supposed to deal with my family what was going to come next? When you get to that stage, this is what you do. And this is how you do. And, you know, I did everything they told me to do. It never resonated with me much. And then I found myself doing things that they didn’t like doing. And then I stopped doing those things. After all of my health challenges, how were you living your life? Do you feel like it was designed through somebody else’s filter?
Monica Azevedo 1:00:30
To a degree, yes, I think also, I was just very, like, not scared, but I, it took me a lot to take the next step forward, you know, I would hesitate a lot and, and to, you know, I didn’t see myself worth a lot of the times. And I would just keep everything the way it was because, you know, I didn’t want to disturb anyone or anything. And now I’m like, Screw it, like screw that, like, I’m gonna do what I want, you know, like to, you know, there’s a degree of everything, right? You’re not just going to do as you please. Because of course, your actions can affect other people or things around you. But in general, I just feel like, I do things for myself, and I’m proud of that.
Bill Gasiamis 1:01:41
Good. How long have you been with your partner?
Monica Azevedo 1:01:47
It’s going to be almost two years. So I’ve known him for quite some time. But when this all happened, you knowhadn’tven’t even been together for a year. And we live kind of far apart. So when he found out he was out of everyone, lived very close, budidn’tesn’t buy he dropped everything and came to Torontostayed stay with me by my side, during the entire process. It’s posed some challenges to our relationship. But man, we’re in a great place right now. And I am glad to have him. And I’m sure he is just as happy and lucky to have me.
Bill Gasiamis 1:02:44
He better be. Yeah, I asked him that. And because of that, I had a sense that, you know, change all these things do impact relationships. And I don’t know whether they have to impact them for the better or the worse, it doesn’t matter. But I know that there’s an impact.
Bill Gasiamis 1:03:02
Because then this person’s dealing with all the things that you’re dealing with, plus the way that he’s also processing what’s happening in his world because his world has had this upheaval as well. And maybe he’s thinking about things you never thought about before, you know, mortality and ill health and all the stuff you know, so I know that I you know, I challenged my wife a lot because I was a completely different version of myself after the stroke and still am, you, you would recognize my personality and all that stuff.
Bill Gasiamis 1:03:40
That’s all kind of the same. But I think the way I talk, and the way I implement things is completely different. And I became a little bit of a preacher after the stroke, and I busted everyone’s chops for quite a while with, well, you shouldn’t do this. And you shouldn’t do that it was probably terrible to be around for a little while.
Bill Gasiamis 1:04:00
And now I’m kind of calmer about the way I pass on my knowledge to other people, I su, purpose and what they should or shouldn’t be doing. I engage in conversations if somebody asks me, but I tend not to instigate that this is what you should do with your life from now on. Take it from the Almighty Bill. That’s kind of ended.
Monica Azevedo 1:04:24
I’ve had the same approach too I would give my two cents all the time. But no, it’s like they didn’t ask you. So just take a step back, and close your mouth a little bit, right? ht. And if they ask you for your opinion, and your thoughts then you know of course share.
Bill Gasiamis 1:04:48
That’s what I wanted to demonstrate that you can still go about being your new version of yourself and living your new self and your new way of going about life and your nutrients, whatever you want to call it. And you can do without busting the chops of your partner and everybody around you, because, you know, I can’t influence my wife to do anything that I feel like she should do unless she wants to do that.
Bill Gasiamis 1:05:15
And then she asks me, how do I go about that? I can tell her exactly how to go about something. But up until that time, you know, why should she stop consuming the foods that I can’t eat anymore? Like, she doesn’t have to, if she doesn’t want to? Yeah, maybe she is not at that stage in her life and all that type of thing.
Bill Gasiamis 1:05:35
And I used to just give my whole family a hard time about food, you know, and all that type of stuff and what they should or shouldn’t indulge in. And yeah, I’ve become like a, like a cleaner eater and a more mindful eater, and all that type of thing. And my family is still the way they’ve always been. And it’s worked well for some of them because they’re in their 80s.
Bill Gasiamis 1:05:58Somee Some of them are seven-year-olds, and some of them are young, where it doesn’t matter what you eat, so they continue to be themselves and be them. And they are all generally healthy, I can’t say that they are unhealthy, and they are terrible with their eating habits, or any of that none of them are like that. But I felt like I needed to improve everyone’s eating habits.
The importance of having a proper diet in recoveryMonica Azevedo 1:06:24
Yeah food could be our poison, or food can be our medicine. And this is something that I’ve been educating myself about a little bit more recently, too. Because, you know, I, we all enjoy, you know, highly palatable foods, like chips and cookies, and, and all those things, right?. And when it comes to whole foods, like vegetables and meat, and what have you, it doesn’t seem to be the top thing on people’s minds.
Monica Azevedo 1:07:07
Buy, you know, I think food can improve your mood, it can improve your physical health as well. It can help in so many different ways. And I think, yeah, if we just educate ourselves more, we can see that and, maybe it might not have the, you know, instant reaction or effect on you, but down the line, you know, it could cause diabetes, it could cause heart failure, or you know, X, Y, and Zed. So maybe right now, it’s not an issue, but maybe down the road, it will be so yeah, I’m sure that’s a conversation for another day.
Bill Gasiamis 1:07:56
It was, and that was the idea I wanted to because I had experienced ill health, I wanted to avoid my family experiencing ill health. And I just became so urgent, and I had to be obnoxious and rude about it, thinking that I was going to stop them from getting where I got, yeah. Yeah. And it was through that, that I was doing it right.
Bill Gasiamis 1:08:16
But yeah, food is really important after a stroke, you need to avoid certain foods, and you need to add certain foods into your diet, because you can either get in the way of your recovery, or you can support your recovery. And that’s kind of where I was coming from. Well, thankfully, they’re all doing well and they’re all healthy. So, you know, I’ve settled down and I’ve just become an example of that.
Bill Gasiamis 1:08:41
Not that I lead by example in my food, or I don’t eat amazingly. But we will go somewhere and I won’t get sucked into the just have one routine like I won’t get sucked into just have one glass of alcohol routine. I’m very comfortable saying not on a drink. Like there’s no need for me to have one you guys have one and then that makes it don’t let that bother you.
Bill Gasiamis 1:09:07
And that was a conversation for a long time. But it’s not anymore. Now people just know that I don’t drink and what Bill What are you having soda water, and they’ll give me a soda water. And the job’s done. So yeah, so good. people are listening and going through what you and I have been through still in their process just happened to them. What’s a little piece of advice I suppose that you would like to leave them with or encouragement or something positive they’d like to leave them with about the journey that they’re on.
Monica Azevedo 1:09:47
I don’t want to get emotional because I don’t know just just keep trying, man. Like it’s it’s, you know, today A might be your really hard day. So I never thought I would be here, right here right now being this confident in myself. So soon i It was such it was so far fetched. So, you know, my advice is, yeah, just don’t give up. Keep trying. And practice gratitude, practice positive self-talk, you know, write down daily affirmations, whatever you have to do to help that become a regular habit. You know, it takes repetition to create habits. And I think that’s a habit to create positive self-talk. It goes a long way.
Bill Gasiamis 1:10:56
Beautiful. On that note, thanks for reaching out and requesting to be on the podcast, I appreciate the fact that you did that. And that you were, I’m gonna use brave because I don’t know which other word to use that you were brave enough to get on 12 months out, while still going through the challenges that AVMs pose, and sharing your story in the hope that it helps other people I appreciate that.
Monica Azevedo 1:11:25
Yeah, I hope, if you can, you know, help maybe one person, at the end of the day, that’s all that matters. And my friend showed me your podcast shortly after I experienced my stroke. Because I was so lost and listening to your story and all these guests, amazing people that you’ve had on your podcast.
Monica Azevedo 1:11:56
You know, there’s so many people that you can relate to and understand. And, again, everyone’s story is so different, right? But there’s something to take away from each of them. And yeah, thank you for giving me this opportunity to share my story.
Bill Gasiamis 1:12:14
You’re welcome. Now, for those people who are listening, and who heard us chat about Monica wanting to connect with people regarding vision issues, I will have some links in the show notes where you can go and connect with Monica, and maybe reach out or if you don’t want to do that, you can just send me an email via recoveryafterstroke.com/contact by my contact form.
Bill Gasiamis 1:12:41
And then I’ll reach out to Monica and connect you guys. If you want to chat. Most of my listeners are in the United States. So there’ll be a better time difference between people in the United States and Canada. Whereas I’m in Australia, but still then even though I am we’ve still been able to connect at a reasonable hour for both of us. So thanks again for being on the podcast. And I wish you all the best.
Monica Azevedo 1:13:11
Thanks, Bill, I wish you all the best as well. Thank you for having me.
Bill Gasiamis 1:14:52
Thanks again for joining us on today’s episode to get a copy of my book Go to Recoveryafterstroke.com/book. To learn more about my guests, including links to this social media, and to download a transcript of the entire interview, go to recoveryafterstroke.com/episodes.
Bill Gasiamis 1:15:52
Thank you to everyone who has already left a review. It means the world to me, that podcasts live and thrive because of reviews. And when you leave a review, you’re helping others in need of this type of information to find it easier, and that is making a difference to their recovery.
Bill Gasiamis 1:16:08
If you haven’t left a review or you’d like to do one, please just go to Spotify, Amazon, or iTunes and leave a few words about what the show means to you. If you’re watching on YouTube, comment below the videos. Some videos are starting to get more comments than they used to, which is fantastic. That means we’re creating a conversation. And we’re creating a space for people to come and find more information rather than just the video.
Bill Gasiamis 1:16:35
And also that creates a situation where YouTube makes their video available for more people like you and me to find it easier. If you’re a stroke survivor with a story to share about your experience. Come and join me on the show. You do not have to do anything you don’t have to plan for them.
Bill Gasiamis 1:16:52
All you need to do is be a stroke survivor who wants to share your story in the hope that you will help somebody else who’s going through something similar if you have a commercial product that you would like to promote that is related to supporting stroke survivors to recover.
Bill Gasiamis 1:17:05
There is also a path for you to join me on the show for a sponsored episode. Go to recovery after stroke Contact, fill out the form explaining which category you belong to and I will respond with more details about how we can connect via Zoom. Thanks again for being here and listening. I deeply appreciate you see you on the next episode.
Intro 1:17:25
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals their opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.
Intro 1:17:42
All content on this website at any linked blog, podcast, or video material controlled by this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis, the content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.
Intro 1:18:05
The information is general and may not be suitable for your personal injuries, circumstances, or health objectives. Do not use our content as a standalone resource to diagnose treat, cure, or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional your doctor or your rehabilitation program based on our content.
Intro 1:18:27
If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be called triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department medical information changes constantly.
Intro 1:18:47
While we aim to provide current quality information and our content. We do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency, or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with the links we provide however third-party links from our website are followed at your own risk and we are not responsible for any information you find there.
The post Monica’s Story – Brain AVM Recovery – Monica Azevedo appeared first on Recovery After Stroke.
Navigating Health: The Impact of MTHFR Gene Mutation on Stroke RiskIn the complex web of genetic factors influencing our health, the MTHFR gene mutation stands out for its significant implications. This mutation, often overlooked, plays a pivotal role in our body’s methylation process and has been linked to various health conditions, including an increased risk of stroke. Understanding the MTHFR gene mutation is essential for anyone looking to proactively manage their health and mitigate potential risks.
Decoding the MTHFR Gene MutationThe MTHFR (Methylenetetrahydrofolate Reductase) gene is crucial for converting homocysteine, a potentially harmful substance, into methionine, a beneficial amino acid that the body uses for growth and repair. However, mutations in the MTHFR gene can hinder this conversion process, leading to elevated levels of homocysteine in the blood—a known risk factor for several health issues, including stroke.
The Connection Between MTHFR Gene Mutation and StrokeResearch has drawn a clear line connecting the dots between MTHFR gene mutation, elevated homocysteine levels, and an increased risk of stroke. Specifically, individuals with the C677T or A1298C mutations in the MTHFR gene are at a higher risk. These mutations can compromise the integrity of blood vessels and promote clot formation, thereby increasing the likelihood of an ischemic stroke, where blood flow to the brain is blocked.
Risk Factors to WatchWhile the MTHFR gene mutation itself is a risk factor for stroke, its impact is often influenced by lifestyle and environmental factors, including:
- Dietary Habits: A diet low in folate and B vitamins can exacerbate the risk associated with MTHFR gene mutations.
- Lifestyle Choices: Smoking and excessive alcohol consumption can further elevate stroke risk in those with MTHFR gene mutations.
- Genetic Predispositions: Other genetic factors may compound the risk, making it crucial for individuals with a family history of cardiovascular diseases to be particularly vigilant.
Proactive Measures for Managing RisksFor individuals with an MTHFR gene mutation, there are several strategies to effectively manage the associated stroke risk:
- Embrace a Folate-Rich Diet: Consuming foods high in natural folate, such as leafy greens, fruits, and legumes, can help lower homocysteine levels.
- Lifestyle Adjustments: Quitting smoking and moderating alcohol intake are key steps in reducing stroke risk.
- Supplementation: Healthcare providers may recommend supplements, especially methylfolate, to counter the effects of the MTHFR gene mutation.
Seeking Professional AdviceIf you have an MTHFR gene mutation, it’s imperative to consult with healthcare professionals. They can offer tailored advice, conduct necessary tests to monitor homocysteine levels and develop a comprehensive risk management plan.
ConclusionThe MTHFR gene mutation is a significant genetic factor that can influence stroke risk among other health conditions. By gaining a deeper understanding of this mutation and taking proactive steps, individuals can effectively navigate the challenges it presents. It’s a journey of personal health management, where informed decisions can lead to a healthier life.
The InterviewAmber Corker discovered that her ischemic stroke may have been caused by a gene mutation that causes sticky blood.
Highlights:
01:31 Introduction
02:01 A series of misdiagnoses
11:04 The MTHFR Gene Mutation
17:10 MTHFR gene mutation and its impact on health
28:25 Managing MTHFR gene mutation with diet
36:20 Dealing with post-stroke deficits
44:16 Stroke recovery and adjusting to new life changes
50:19 High-risk pregnancy due to genetic mutation and blood thinner use
1:00:39 Living with a lifelong alteration after a stroke
Transcript:
Bill Gasiamis 0:00
Hello, everyone, welcome back to another episode of the Recovery after Stroke Podcast. Today, we’ve got a crucial topic that could be incredibly relevant to many of our listeners, if you’ve ever been informed that your blood is sticky or thicker than normal, or if you have experienced an ischemic stroke with an unknown cause known as cryptogenic, this episode is especially for you.
Bill Gasiamis 0:24
And for those who’ve come across the MTHFR gene before and are uncertain about what the mutation means and what the potential health implications are, you’re in the right place, we’ll be delving into the consequences of the MTHFR gene mutation, and how it may relate to various health issues related to stroke.
Bill Gasiamis 0:47
Stick around as we unravel important insights in today’s discussion. Now also, I am so pleased to announce that the book is getting excellent reviews from stroke survivors from all around the world. The most recent one is from Louisa, who says I wanted to share with you that I finally was able to get your book delivered from Amazon and I tell you that I’m only on page 32 and I’m hooked, I love the way you tell your experiences.
Bill Gasiamis 1:15
The book tells the story of 10 stroke survivors and the steps that they took that got them to the stage in their recovery, where from a personal growth perspective, they were able to transform stroke from the worst thing that happened to them into the best thing that happened to them.
Introduction – Amber CokerBill Gasiamis 1:31
To find out more go to recoveryafterstroke.com/book. This is episode 295. And my guest today is Amber Coker, who experienced an ischemic stroke at age 30. Amber Coker welcome to the podcast.
Amber Coker 1:46
Thank you. Thank you so much for having me.
Bill Gasiamis 1:49
More pleasure. Thanks for taking some time out of your workday to be here.
Amber Coker 1:56
Not a problem, I was happy to join you.
Bill Gasiamis 1:58
Tell me a little bit about what happened to you.
A series of misdiagnosesAmber Coker 2:01
Okay, this was 2016, I woke up on January 15 and the right side of my face was numb. And on my way to work, I work for a university. And we have an employee health clinic. And on my way to work, I decided to stop in there. And the doctor did the normal, you know, feeling of my face and raise your arms, had me walk, talk and everything.
Amber Coker 2:37
And I remember distinctly him saying well, we can rule out stroke. And he said I think you have a sinus infection. Okay, I went on to work and it didn’t get any better. I’m left-handed, and I noticed my handwriting was very bad. But I went on through the day. And the next morning, it was a Saturday and I woke up with a double vision.
Amber Coker 3:11
And I wore contacts and I had my glasses on. And I thought that it was something with my glasses. So I put my contacts in and still had double vision. I was like, Okay, there’s something wrong. So I went to an urgent care walking clinic. And they told me I had a migraine, so they gave me migraine medicine.
Amber Coker 3:33
And this was over on Martin Luther King, Jr. Weekend. So everything’s closed on Monday. But I went back to the urgent care on Monday. And I was like, how long is this supposed to take to work? Because, like my vision is a little bit better, but like my face is still numb. And they were like well it should be working by now. They’re like you need to go see your doctor tomorrow.
Amber Coker 4:02
So I went to my primary care on Tuesday. So now you know, like we’re four days in from whenever I woke up. And she ordered for me to have a CT. And I did that on Wednesday. And then it came back inconclusive. So then she ordered an MRI on Thursday. And that afternoon, it was late in the afternoon. She said I need you to come to my office at eight o’clock tomorrow morning to go over the results.
Amber Coker 4:37
So my husband and I went to when my son was a month shy of turning one. So you know I have an 11-month-old and then my husband and so my husband and I went to her office at eight o’clock. And she said it appears you’ve had a stroke. “It appears” like, either I did or I didn’t like, I’m you know, so she was like I’ve scheduled you with our neurologist that’s in town I live in a fairly small community of 50,000 people, we had one neurologist in town.
Amber Coker 5:23
She said, I got you in on Monday, for an appointment with the neurologist. She said, Now over the weekend, I need you to stay calm. And I need you to not, you know, your blood pressure can’t rise, I need you to stay extremely calm. And I said I’m 30 years old. I have an 11 month old. And you just told me that I had a stroke.
Amber Coker 5:51
And you want me to stay calm over the weekend until I can go to see a neurologist. I was like, are you kidding me? Like, there was like, okay, like, I’ll stay calm. And she said, if anything changes the way you feel anything at all, you get a headache. You know, like, all of a sudden, you can’t move, you know, one of your limbs the same way, anything at all changes.
Amber Coker 6:19
You go to the emergency room immediately. I said, Okay. I had just started a new job here at the university. I have been working for the university for four years, but I just started a different job at the university. So I had to call my boss who had been, I’d been working for her for three months. And I was like, Well, I can’t come to work today because I had a stroke.
Amber Coker 6:45
And she was like, I’m sorry, you cut out. It sounded like you said you had a stroke. And I was like that’s what I said. And she was like, Okay, I don’t know what to do with that. And I was like, me neither I’m sorry. But I’ll be back on Monday. And she was like, I don’t think you are going to be back on Monday.
Amber Coker 7:08
And I was like, Okay, well, I don’t know. So like, okay, well just keep me posted, I guess like, okay. So that night, I woke up at about two o’clock in the morning, and I had a headache. So I wake my husband up and I’m like, I have a headache. So we call my parents to come and get my son. And we go to the emergency room. And I had a wonderful doctor in the emergency room and they did another scan, and they said well, nothing new is happening.
Amber Coker 7:48
So I was like, okay, so you know, I’m there until, who knows how long, and then I go back. So then the rest of the weekend is fine. And nothing else really different happens. And then we get to Monday. And I’m taking a nap before my appointment. And it’s like an hour before my appointment with the neurologist.
Amber Coker 8:12
And my mother-in-law was coming over to watch her son. She had just arrived and the neurologist’s office called. And they said, Well, the doctor just looked at your chart. And he said not to come to the appointment, but to go to the emergency room. Because we don’t have the equipment to deal with how severe your case is.
Amber Coker 8:43
She was like we’ve called over there, they know you’re coming. So you just need to go in there and tell them who you are. And so I’m like, okay, so I get up, I get my husband. We go back to the emergency room. And he goes up there and he says, This is Amber Coker and they just go okay, like they had no idea why I was there.
Amber Coker 9:13
And he was like, well, she had a stroke, and like, bam, all bets were off. Everyone started moving. They’re grabbing me. They’re taking me back. They’re like getting the wrist thing on, you know, they’re like getting me into a room then they start trying to like, take off my clothes and get me hooked up and asking me all the questions to type into their thing.
Amber Coker 9:39
I had like five nurses in there, all doing different stuff. And they’re like, pushing my husband out of the way. And like the doctor that I had seen Friday night whenever I went in there, walks by and he’s like Amber, why are you here? And I was like, well, I and like I was trying to explain to him, but everybody was like moving and talking and he was everybody stops.
Amber Coker 10:07
And so everybody stops. And he was like, why are you here? And I said, my appointment was supposed to be, you know, at 3:30. They called me and they said, to come here instead. And he said, let me make some calls and find out what’s going on why they sent you here.
Amber Coker 10:29
They said she’s not having a stroke right now, you guys like she doesn’t need like, all of this, just stop. So then we wait for four hours. Nobody tells us anything. We’re just in there in the room for four hours. And finally, my husband goes out and he’s like, what’s going on? And they’re like, Oh, we’re just waiting for a room to open up at OU Medical, which is in a big city in a different town.
The MTHFR Gene MutationAmber Coker 11:04
And I was like because she’s been admitted. And we’re like, what? And so they transferred me down to Oklahoma City, and they admitted me to the hospital. That’s where I met my neurologist with whom I had been with for seven and a half years. And where they did all of the testing, and I found out that I have the MTHFR mutation gene.
Bill Gasiamis 11:38
Stop there, this, oh, my God. So I’m listening to this and going, surely at some point, they said, send her to the hospital before the 10 days. Someone said, go to the hospital, someone said go and get a scan at the hospital, someone said go and have an MRI. It’s just ridiculous that it took so long.
Bill Gasiamis 12:01
And then it had to go around that massive loop to get you there. And it’s amazing how simple that seems. And yet how everyone missed the critical thing with you, which is to say, you need to get to a hospital. That was it, I can’t understand how that happens. It’s so strange.
Bill Gasiamis 12:23
And to say to blame it on your medical system in America and all the problems over there and all that kind of junk. It’s not fair, because I hear it from people all over the world. It’s just humans. It’s just people that make the wrong call. And I’m not sure what it is. But I can’t even explain it. It’s so strange. I took seven days to get to the hospital because I was the idiot who decided that I was good enough not to go to the hospital.
Bill Gasiamis 12:55
Whereas in your case, you know, you’re unwell, you’re feeling on it, everyone knows you’re unwell. They do a scan, and they confirm it. Everything is supposed to be in your favor to say this lady needs some help. And instead of helping you, they told you I’ll see you Monday, and I won’t be back for a little while. It’s crazy.
Amber Coker 13:23
I mean looking back, I would have gone to the emergency room. I don’t know. I mean, now, like when my face was numb, or when I had double vision, instead of going to urgent care or to, you know, the employee health clinic. However, you know, I was still seeing a medical professional. That I thought, well, you know, if I go see them, then they’ll they’ll tell me. Like, if I needed to go to the emergency room, which they didn’t.
Bill Gasiamis 14:03
Yeah, I know. I know that, oh my gosh the chances that somebody who hasn’t had a strike and listens to this podcast, unless they your friends and family. It’s very low. Most of the people listening are stroke survivors and caregivers. And they probably all like you and me, we know what to do now. But it’d be so good if we could just tell the people of the world. If you have these types of things happen to you just go to a hospital.
Bill Gasiamis 14:03
Don’t wait 10 days before somebody sees you, insist that somebody says you, man, it’s such an intense moment I can’t get over it. But I appreciate how it happens. And I’m glad that everything worked out and that you’re here and you can join us and all these amazing things have happened, right? So we’ve had a really good outcome, all things considered.
Bill Gasiamis 15:03
Oh, my gosh. So the reason I wanted to speak to you when you reached out was because you said something that nobody has ever said before, about the connection to stroke and the MTHFR gene. Now, most people listening won’t know what the MTHFR gene is. However, I do know about the MTHFR gene a little bit.
Bill Gasiamis 15:30
The reason I know about it is because I tested positive for one copy of the gene. So I picked it up from one of my parents. As a result of that gene, I have gone out of my way to change my diet to ensure that certain things aren’t consumed.
Bill Gasiamis 15:48
Now, for people who are listening, and have never heard of that, and watching, can you tell us what the MTHFR gene is, then we’ll talk about why it’s important to know whether you have this particular gene mutation and whether you have one copy or two copies.
Intro 16:06
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. How long will it take to recover? Will I recover? What things should I avoid? In case I make matters worse, and doctors will explain things that, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 16:31
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called Seven Questions to ask your doctor about Your Stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website. Now, recoverafterstroke.com and download the guide. It’s free.
MTHFR gene mutation and its impact on healthAmber Coker 17:10
Yes MTHFR is methylene tetrahydrofolate reductase. Which is a huge mouthful. And it took me many years even though I have it to know exactly what it all stands for. You know, and of course, the acronym of the MTHFR is really fun. Because you know you look at it and you think it could be something else. And sometimes I feel like it is so the gene mutation that causes the body to not turn folate and folic acid into their active form, which increases homocysteine and your homocysteine levels in your body, which irritates your arteries, which can cause blood clots.
Bill Gasiamis 18:20
Let’s pause there are let’s pause there for a second. Okay, so the MTHFR gene, you can pick it up, you can pick it up from your parents. As a result of that when both of your parents have the gene and you have the gene. What that does is you need to be aware of it because there are certain foods that you cannot do well with you can’t break down you can’t process them in your body.
Bill Gasiamis 18:47
Now when I say foods, not necessarily foods but ingredients in foods, one of those ingredients is folic acid, which is the synthetic form of folate, which is used specifically for women who are going to be pregnant or are pregnant to decrease the chances of neuro birth defects in their children. And then as a result of that, for women to get a lot of folic acid and folate through their diet, because usually it’s found in leafy greens silverbeet a whole bunch of other you know, lovely leafy greens.
Bill Gasiamis 19:38
What they do is what the people that know better to do is they put folic acid in bread in flour, and all flour has added folic acid and the purpose of that is to decrease the chance of neural birth defects. I know it happens in A lot of Western countries, but it happens in Australia. As a result of that, people who have the fat MTHFR gene don’t know, or perhaps getting over, what’s the word overexposed to folic acid? And they shouldn’t be they should be avoiding it. Did I say it well?
Amber Coker 20:27
Yes. Another thing, along with just what the folic acid that they put into food for women who are pregnant, especially during the first trimester, they suggest them taking a folic acid supplement, or also just a regular prenatal vitamin, they have a high, you know, high doses of folic acid. Which, if you have MTHFR, and I don’t know exactly this part I’m not real sure about but the if you have MTHFR.
Amber Coker 21:16
You have a higher chance of miscarriage because of the amount of folic acid that you have. And that you’re like that you’re taking, especially during the first trimester due to your folic acid supplement or your prenatal vitamin. And it can cause miscarriage. And that was one of the first questions after my blood tests came back that my neurologist asked me, he said, How many miscarriages did you have before you had your son?
Amber Coker 21:53
And I looked at him like he was crazy. was like I didn’t have any. And he was shocked. Like that shook him to his core. Like he didn’t, because he just knew he just knew I had to have had several miscarriages before I had my son. And, you know, I was like, I didn’t have any and he was like, how many miscarriages Did your mom have?
Amber Coker 22:21
And I said, Well, she had two she had one before my brother and she had one before me. And he was like, okay, and then he seemed to calm back down. Like he was like, okay, my world is back in order. He was like, You were lucky. And I was like, I mean, I was lucky. But so that’s another thing that it causes because your body is not breaking down that folic acid and folate. It can cause miscarriages as well.
Bill Gasiamis 22:54
So just so we explained things well. You had a specific stroke that has a particular title, which is basilar artery thrombosis. Is that right? Yes. Did I say it well?
Amber Coker 23:13
I had a blood clot in my basilar artery. It was just an ischemic stroke. That was just the fancy term of the location of where my blood clot was.
Bill Gasiamis 23:28
Okay. No worries. So that is not linked to the particular MTHFR gene, the location is just the location where the blood clot ended up anyway. Okay, so your doctor is pretty switched on? Does he give you the details about the MTHFR gene? How does he take you through that discussion? Because you’ve never heard of it before?
Amber Coker 23:52
Oh, gosh, no, no. And I don’t like no, I had no idea. My husband recorded on his phone, the whole thing whenever he came in, but it ended up being like an hour and a half of explanation. Quite honestly, and I think my brain did this kind of to protect itself. I don’t remember exactly how the whole conversation went. But yes, he did come in and he did explain it.
Amber Coker 24:22
The way he explained it to me the first time around, was that because folate and folic acid do not break down, it makes your blood sticky, which makes it more prone to clots is how he explained it. Then that’s kind of real, basic terms there’s more to it than that, but that’s the way he explained it. He said that since and he’s a very, very well respected and very, you know, very good neurologist and he has practiced all over the United States.
Amber Coker 25:09
And he said when he moved to Oklahoma, he saw more cases of MTHFR than he had ever seen. And he thought that it had something to do with the Native American blood. He has no science to back that up. That was just kind of his thought. But he found it very interesting that whenever he moved to this part of the country, he saw a lot more of it.
Bill Gasiamis 25:46
I guess I was gonna say, is there a large Native American community in Oklahoma? Yes. Do you have Native American ancestry?
Amber Coker 25:56
I do. I do. It is not. It’s not strong. I think I’m like one 128 or something. Okay. So it’s not, it’s not like I’m half or a fourth. But I think pretty much everyone if they were born in Oklahoma, or one of the surrounding states probably has somewhere in their lineage, some Native American blood. Just because this part of the country does have was, you know, Native American land for so long. But yes, I have I have two copies, of the mutation.
Bill Gasiamis 26:40
Okay, what’s what does that mean?
Amber Coker 26:44
That means that I got a copy from my mom and I got a copy from my dad. So I was the lucky one. And because, I am homozygous, which means that I have the two copies. If you just have one, then you’re heterozygous. I can’t just manage it with diet.
Amber Coker 27:12
Heterozygous, which my son is heterozygous. He was going to get one copy for me because I have to. So he had no choice. He was going to get one. I did have we had him tested. And he did he just has one copy. So his, his can be controlled with diet and hydration.
Bill Gasiamis 27:41
But you say I also hit a rose Agus hit her out means one homo means to. Okay, I just need to remember this because I keep forgetting. And guess what? Guess what I just remembered, which is interesting. I just remembered that my dad had taken a blood thinner. The reason my dad takes a blood thinner, which I did not know about for many years until I was an adult, is because the only way my dad can describe his is because my blood is a little bit sticky.
Managing MTHFR gene mutation with dietBill Gasiamis 28:25
Or thicker. Wow. That’s fascinating. That’s fascinating. So what I’m then certain of is that my children, I’ve got to now confirm again, whether or not I’m heterozygous, or homozygous, I can’t remember now. Now I can’t remember. So I’m going to confirm that. And then I’m going to speak to my children about that. And you said that your son says he’s got one copy. You can manage it with diet? No. What does that mean? How do you manage that with diet?
Amber Coker 29:04
I’m being aware of the ingredients of what he is eating how much folic acid he’s taking, and hydration. That was one thing that the doctors said was staying hydrated. If you’re hetero, you just have the one copy. Hydration plays a very large part in keeping that under control because it keeps the blood moving smoothly through because the more dehydrated you get, the more likely that that stickiness is going to, you know, come through.
Amber Coker 29:46
So staying hydrated and not taking hormones. You know, guys were, you know, males when they’re teens, they want to make that testosterone tight, you know those things to bulk up or whatever, I’ve had to make it, my son is only nine now. But we’ve already started the conversations of like, you can’t do that. Like you, you have to stay like when you’re, he plays soccer.
Amber Coker 30:22
And you have to stay very hydrated, you have to drink lots of water whenever you are playing. And when you get old, and he doesn’t understand it now. But I’ve started early talking when people start talking about taking supplements and stuff to bulk up or be faster, whatever like you cannot do that. Like you can’t do it. Like, yeah, and he knows about, he knows about my stroke. And he knows, like, I’ve told him all about it. And so I think he understands. But we started real early talking about that stuff. Hopefully, it sticks as he gets older.
Bill Gasiamis 31:04
I love that you started so early because I think about it now everything’s coming back to me. All the people that I’ve interviewed that have had a stroke that has got, apparently No, cause they’ve had an ischemic stroke. And they have been told that it is a stroke that they can’t find the cause for that they have no idea why it happened. And there’s nothing we can do and all that type of thing. And I’m thinking about that now. And it’s like, wow, these people may have had an MTHFR gene issue.
Amber Coker 31:35
They should have their blood tested. It can be tested by just a blood test. You know, there’s a specific, it’s not a specific test that they run just like a normal blood test. But I don’t know exactly what it is that they call it. But you can ask, you know, I need to be tested for the MTHFR mutation.
Bill Gasiamis 32:10
I was gonna say to people who are listening and watching if you’re a stroke survivor who’s had a stroke, and it has been an ischemic stroke, and they’re not certain as to why it happened, go to your doctor Monday morning, and ask for a MTHFR gene test, whatever it costs, get it done, because this is one awesome way to prevent further strokes from happening, especially if you’ve had an ischemic stroke.
Amber Coker 32:40
It is also a way to help prevent your family members from having a stroke Possibly, yeah.
Bill Gasiamis 32:50
I just can’t believe I’m just so stunned. It’s somebody that I’ve known for many, many years. And nobody, the people who told me that I had the MTHFR gene just explained to me that I should avoid folic acid. And that’s going to help me with my energy levels going to methylate things better and absorb the energy from my food and process that and turn it into energy. And that makes complete sense to me. But they didn’t give the other deeper explanation as to what the purpose of avoiding folic acid was. So I imagine when you guys go shopping, are you guys forever Turning the pack around and looking at the ingredients list? Again, that’s out?
Amber Coker 33:33
No, we probably should be, but we look more at vitamins. You know, like, just like the daily vitamins that that my son takes and then I take just to make sure that it does not have folic acid and that that’s more of what we do. And then, I mean, I’m aware of it. I mean, I do kind of look to see every once in a while but it’s the diet part is not the part that I that I focus on a whole lot. I probably should but I don’t.
Bill Gasiamis 34:26
Yeah, fair enough. I was just curious how you guys go about living with that kind of information. I know you shouldn’t be over. What’s the word like? Are you anxious about it? And think about nothing else all day every day. I know that you should not be like that. No, I don’t. I just go about my life as normal and I eat foods that contain folic acid as little as possible, but I do from time to time, especially sometimes bread.
Bill Gasiamis 34:57
Usually, I avoid bread like the plague pasta, and all that kind of stuff. Anything that has flour, wheat flour in it, I avoid. But every once in a while I’m going to have some and I don’t think that type of amount of folic acid intake is going to make a difference to my right, right health and well-being, you know, down the track, because I’m not consuming too much of it.
Bill Gasiamis 35:25
Now, what annoys me about this whole folic acid issue is that put it in red, so that women can avoid neurobirth defects. Well, men don’t need folic acid to that extent for that reason. So it’s like weird that let’s dose the whole population when only half the population well, not even half, but we’ll say half the population benefits from having.
Bill Gasiamis 35:49
And I say not even half because some people don’t need additional folic acid in their diet, they have healthy levels, regardless of whether they’re consuming it in this form, or foods. So it’s a really weird thing that governments do, let’s, you know, put a chemical in the food for everybody to consume and then just assume it, it’s going to be fine.
Amber Coker 36:19
Absolutely.
Amber Coker dealing with post-stroke deficitsBill Gasiamis 36:20
Yeah. You know, with the stroke. So what did you end up coming home with that you had to recover from or overcome? Did you have deficits that you had to deal with, I know that you initially noticed the numbness in your face. And that was there while you were trying to get the diagnosis. What happened after that?
Amber Coker 36:41
When I came home, eventually, the numbness lasted probably about a month, slowly kind of going away. I had weakness in my left arm. And I felt my whole left side. I felt like I walked funny. And that was something then going in Walmart, walking with my husband, I was like, do I look funny? Like, do I look like I’m walking funny? And he was like, no.
Amber Coker 37:18
And I was like because it feels weird. I feel like I’m not walking, right? And he was like, You look fine. You look like you’re walking just fine. So it was very strange to me to do that, I also with a weakness in my left hand, which I’m left-handed, so I had to do a lot of physical therapy with, you know, strengthening my left hand. And it took a long time for my handwriting to go back to normal. So, I do struggle with words, at times.
Bill Gasiamis 38:01
Reading words or speaking words?
Amber Coker 38:04
Speaking words.
Bill Gasiamis 38:05
On the tip of your tongue, they can’t come out or do you not know which word to use?
Amber Coker 38:15
I know what I want to say, but I just have trouble getting it to come out. And that’s you know, I started following your page on Instagram very shortly after my stroke. And I would see it as I’m scrolling through, I would see a post and be like, oh, and it wasn’t just shortly before I reached out to you to tell you about my stroke.
Amber Coker 38:44
I saw a post of yours that said, you know, like if you had a stroke while you were asleep, do you have sleeping anxiety? And I was like, well, yeah. Oh, wow. I wonder if that’s why I don’t sleep. And I kind of just when I was like, huh, like, and I just kind of went on. And then a little while later, I was scrolling through I saw a few days later that you say something about like, do you notice your deficits more when you’re acutely stressed?
Amber Coker 39:21
And I was like, yes, like when I’m highly emotional, like angry or upset. I have a very hard time finding the words that I’m trying to say. And I was like, Oh my gosh, like, and that’s whenever I was like, You know what? This website and like, you know, I’ve been following it for years, you know, and I just kind of scroll through I read it sometimes I’d read the comments, you know, see what everybody else was saying.
Amber Coker 39:52
But just kind of going on through. But it wasn’t until those two that I kind of just stopped and that’s when I went to your website and I listened to podcasts. And then I saw about like, being a guest. And then I was like, I’m just gonna tell him about my story. I mean, who knows? I wonder if you’ve ever heard of MTHFR? Because I sure haven’t. But it was those two things that so yeah, my speech the trying to find a word that is one thing that I do struggle with.
Bill Gasiamis 40:25
The interesting questions, don’t come from me, they come from people who I coach who are trying to overcome their deficits and their stroke. And they make sense to me when I read them. And when I ask people I notice that I also get my deficits to get worse when I get highly emotional. I notice how they get worse when I don’t have a good night’s sleep, that kind of thing.
Bill Gasiamis 40:53
That all makes sense. But sometimes they seem like they’re for me. It’s like, I No, that’s no big deal. That’s normal, I get it. And then I realized that people like you go, Oh, my God, nobody ever asked me that question. Of course, that yes, that is and then they connect the dots. And then that somehow makes things better or different or helps them adjust or change something.
Bill Gasiamis 41:19
One of the strangest things, one of my stroke survivors, who I coach said, was that she hears noises in the affected side, like voices from other people in just the affected ear. So she doesn’t have any ear problems, per se. But on the stroke side, that is affected. She hears noises, words, people talking, and it’s driving her bananas, she says, and she goes, Is that normal?
Bill Gasiamis 41:47
As I’ve got no idea. I don’t know what that is. But let me ask the community, the whole tell us whether it’s no. And sure enough, I asked a question. And bang, people are going, yep, I hear noises. I hear voices. I hear things since the strike in my ears that I’ve never heard before. And what that did say? It seemed to just settle people down about it, it seemed to go, oh, okay, it happens to other people, oh it’s just the result of the stroke, some people played it down, it’s nothing then I can ignore it.
Bill Gasiamis 42:20
And it’s like Wow, yes. I mean, it’s such. My, stroke survivors who I’m coaching and the people who are listening are a wealth of knowledge. And I really, truly appreciate the sharing of that knowledge. Because I learned so much from it, and then we can help other people. But this is important that the MTHFR gene is really important for people to know about. And if they do get tested, it just gives you a little bit more information.
Bill Gasiamis 42:52
It’s not invasive, it’s not hard to deal with when you know about it, and you can just take small preventative steps, especially if you’re the kind of person who’s already trying to prevent another stroke from happening. I think it’s really important. And I love the fact that you had the good fortune after all of that story to end up in the right. doctor’s surgery, and then speak to the right neurologist who knew about their condition and was able to give you a lot of information that you can then share.
Amber Coker 43:24
I love my neurologist. I loved him. He recently went to a Veterans Hospital, just within the last six months. And so, since I’m not a veteran, I can’t see him anymore. So I have a new one. But, I mean, he was with me, I just happened to be very lucky that he was the one working at the inpatient hospital that day, and that he was a stroke biologist he says that he specializes in strokes and that I came in that day. And then because he sees patients, you know, outpatients in the clinic, too. So I was with him for seven and a half years before he moved over to the Veterans Hospital.
Stroke recovery and adjusting to new life changesBill Gasiamis 44:16
So even though you’re seven and a half years out, or it’s 2016, so eight years now, are you still getting regular visits with your neurologist and scans and all that kind of stuff? How are you managing this?
Amber Coker 44:33
I don’t get regular scans. But I do go I do go see my neurologist once a year. Just to do well, I’m my neurologist also treats me for migraines. And so when I go more like what right now I’m going more than once a year but that’s just for migraine stuff, but for stroke stuff, it’s once a year Just to do the typical, like, make sure that everything you know this thing.
Amber Coker 45:08
And if anybody that’s gone to the neurologists, you know, if you don’t have to do all of this like, all of the different things. So I do go once a year for that. Because I am on a blood thinner. And it’s been working great, you know, for eight years, so, yes, I do go once a year, and I will be on a blood thinner for the rest of my life.
Amber Coker 45:41
And I will probably see a neurologist. Let’s see, what did he tell me? He said that I could go out 18 to 24 months at max, at some point, but I, I, I’ve always said I feel better going once a year. That’s just kind of like, I just feel better with the 12 months going in just making sure.
Bill Gasiamis 46:09
That’s always good to go to the doctor once every 12 months to just do a checkup do some blood, touch base, and make sure everything’s going well, I think that’s great. So what was the hardest thing about this stroke for you?
Amber Coker 46:26
I would say initially, the hardest thing was knowing that I had blood, a blood clot in my brain. And then it was just there. And at any point, something could happen. I was what my hospital in town calls a frequent flyer in the emergency room for eight months after, because every time something felt weird, in my head, I went to the emergency room, I had more seat tees and more MRIs in the eight months after than any one person probably would have in three lifetimes. Like until, like eight months out.
Amber Coker 47:35
One of the times that I went in, and when I went, I told them, I said, I know like, I know that I sound crazy. Like I know that. But something is off. And this is my history. And I need I need you to tell me that I’m not having another stroke. Like that. That’s what I need. And that at that eight-month mark, they did a scan. And he said I don’t see anything. And I said, except for the blood clot.
Amber Coker 48:09
And he said, there’s no blood clot. I said, What do you mean, there’s no blood clot? And he was like, there’s no clot on the skin. And I said, You mean it’s dissipated? And he was like, I don’t I don’t know. I’m just telling you like, there’s no blood clot in your brain. After that, I was fine. I didn’t go back. I didn’t that I didn’t have to go back to the emergency room every time I knew that something felt off.
Amber Coker 48:44
So initially, it was that fear of when is the next one going to happen. After that, it was the hardest thing was knowing that my life was not going to be the way I planned it. Because I was advised not to have any more children which was not part of my plan. Um, I never thought that I would have an only child. I never wanted to have an only child. And so that was the hardest part trying to adjust to that.
Bill Gasiamis 49:36
That’s a tough one. Why would they say that that was advised why did they advise against that?
Amber Coker 49:44
They said that it was I needed to it had to be extremely planned. Extremely monitored. There could be there could be no accidents. I mean like, I mean, it had to be a very rigid and structured conception, like I mean everything. And even then they would have to, you know, I would be weekly visits with a specialist for the whole time.
High-risk pregnancy due to genetic mutation and blood thinner useBill Gasiamis 50:23
Thinking about miscarriages and challenges.
Amber Coker 50:27
Yes and then bleeding out later on. Because they would have to I would have to stay on some type of blood thinner, I would be switched from El Eliquis to a different one. Okay, but then it would be constantly checking in. I mean, they were they did say, you absolutely can. However, it is extremely high risk. Okay.
Bill Gasiamis 50:56
Okay. So two things are going against you so to speak, is the MTHFR gene mutation that you carry. And then it’s also the fact that you’re on a blood thinner to help make sure that your blood doesn’t clot. And in the event of the MTHFR gene, causing challenges to your, to your pregnancy. And then there is a situation where there’s some kind of a complication to that, that your biggest risk after that is bleeding out. Because you’re on a blood thinner.
Amber Coker 51:39
Which seems kind of contradictory, you know, because, like, on one hand, they’re, they’re afraid of clotting. So, on the one hand, they’re afraid of bleeding out.
Bill Gasiamis 51:50
Yeah, yeah. Wow. Okay.
Amber Coker 51:53
It was one of those things where it was, if you do this, it has to be before you’re 35. So it was one of those conversations we had to have every single time I went in.
Bill Gasiamis 52:07
Did you have an ob-gyn involved in this particular conversation? Or did that happen without?
Amber Coker 52:18
No. Because we never got that phone to where I said before, because it was more of a, it was more of a struggle between me and my husband and my neurologist that between the three of us trying before we could even get to the next step of bringing in an OBGYN to you know, as a high-risk specialist for that.
Bill Gasiamis 52:52
And anyway, your neurologist seems like an amazing, amazing doctor. You know, he’s got so many other things that are going on that he’s aware of that he needs to make sure that you’re advised of.
Bill Gasiamis 53:11
So that he manages your health and well-being way beyond just what you guys discovered with a gene. And that he knows like, what the complications are for you down the track, should you choose to go down a certain path, and it’s big, it’s a big call to cite somebody, you probably shouldn’t have another child, but he’s not saying that what he’s saying is, you should be fully aware of the risks, you should make a fully informed decision.
Bill Gasiamis 53:40
And these are the chances these are the risks that you face over and above what say, quote, unquote, a normal person who doesn’t have these conditions will face and I love that about him because that’s not many. There are not many people who have that foresight that do that kind of deep thinking about what the future holds for somebody who’s you know, in their 30s Right?
Amber Coker 54:10
He is an Outstanding, outstanding named Doctor. And ultimately, he did leave the decision up to me and my husband and you know, my husband said I do not want to have a toddler and an infant and no wife so common and you know, right at first you know, I was going every three months every six months, you know, for a long time every six months and then I graduated to like yearly.
Amber Coker 54:47
But you know, for a while there, I was going a lot and every single time it was like do we need to talk? Do we need to have another pregnancy talk? Are we going to do it like are we talking about this time? And every time we would look at each other and we like But no, because we weren’t talking about it. And finally at the last one, when I was 34, he said, This is it. Are we doing this? And I said, and at this point I had I had come to terms with it. And I said, No, we’re not.
Amber Coker 55:20
And my husband goes, well, and I looked at him. And I just I, my eyes got huge. And the choice words that came out of my mouth, and I was like, You have got to be kidding me. And he was like, what? Like, now it’s like, for real? And I’m like, Yeah, I know, it’s for real. It’s like, are you? And I was like, No, we’re not doing this. Because the point, you know, now, my son is talking, and he’s out of diapers, and he’s getting ready to start school.
Amber Coker 55:59
And so I’m like, I’m not starting over. Like, I’m done with that. And I had already come to terms with it. So I was like, no, no, we’re not, we’re not having it. Like, we’ve decided what we’re done. And so my doctor, he just laughed, and he was just like, I love you guys so much. He was like, You guys are the highlight of my day when are you coming?
Bill Gasiamis 56:22
You’re, you’re fair enough as well, to give him the dirty look. He didn’t realize it was real, because he’s a male. And he doesn’t have any of the things that go along with, you know, the, we’ll call it the, you know, the natural cycle that women go through where it ends, eventually, the opportunity ends doesn’t have that he’s never thought about that. Because he doesn’t have to think about that. He’s just going about life going.
Bill Gasiamis 56:49
Yeah, that’d be good. And then he goes, I’m gonna change my mind now. And are you on board? Come on. But I get what he’s thinking, but you’re right, as well is that, your life, when you’ve got young children if you’ve got them young together, it’s chaotic. And it’s terrible. And it’s difficult, and it’s amazing, and it’s lovely. But they it ends, the chaos ends very rapidly because both children go through their phases very close together.
Bill Gasiamis 57:20
And then, and then you’re kind of free, you get your life back, you start sleeping more, you do all these things. And then I know, because I’ve got some friends who have got children that are 567 years after the previous one. And they’re all that pain and suffering of having lovely, beautiful, gorgeous children gets extended, and it gets drawn out. And you’re, and you’re in the twilight zone for too long.
Bill Gasiamis 57:51
And I see them so I know what you mean, I get what you mean. And I think you made the right decision. Either way, you know, you made the right decisions to look after your health and to honor his first request, which was I don’t want a toddler, and a baby and no wife. Like all those things, they’re really important things to consider. And I think you guys have gone about it, you guys have gone about it the right way the hard decisions to make. So what stroke taught you
Amber Coker 58:33
A couple of different things. One is to do what you want and do what makes you happy.
Amber Coker 58:47
Because, you know, you don’t know what the future holds. And life is short and you never know what’s going to happen. And, and the other thing is, it’s taught me to give myself Grace give me to give myself grace, in everything in adjusting to what my new life is going to look like. And give myself grace in adjusting to any deficits and to you know, to just be patient with myself just like I would with other people.
Bill Gasiamis 59:36
Are you hard on yourself? Normally?
Amber Coker 59:39
Yes. And, I did not like not being able to bounce back just right away into what was normal, and I didn’t like that. And I had to adjust my mindset of, you know, it’s okay, because this huge thing happened to your brain, which can alter absolutely everything about you. So, I, like it’s okay that you’re not just, you know, just like that back to how everything was.
Living with a lifelong alteration after a strokeBill Gasiamis 1:00:39
Yeah, that’s good to give yourself grace. I’ve met a lot of people who say something similar who are not patient who give themselves deadlines, some people act like their worst boss would act to them in the work environment, you know, they have all these expectations or these deadlines and, and it’s like, this is not a broken foot, you don’t have you don’t go to the doctor, get a scan, get a cost that put it on six weeks, come back, take the cost off a little bit of rehabilitation, and you’re back to normal, it doesn’t it’s not help. No, at all.
Amber Coker 1:01:23
No, no, this it’s a it’s a lifelong alteration. Whatever your deficit may be, or, even if you don’t have any, there’s always that, you know, there’s, there’s always that something is I mean, it’s, it’s an alteration of your outlook on life as well. And it’s like, long, it’s not, it’s not just something that can, you know, slap a cast on, and then you’re good to go.
Bill Gasiamis 1:02:00
For me, I describe it as it’s, it’s like having like a scar, a really serious scar that you’ve got early on in your life. And even though the scar tissue has healed over and it’s gone you can see the sky every day. And every day, the scar reminds you of where you got that scar and how you got that scan. Sometimes you don’t notice it.
Bill Gasiamis 1:02:19
But sometimes you notice and you remember that that scar happened. And this is the way that it happened. Now, scars fade, which is cool, right? They fade and they get less obvious. And that’s our stroke kind of evolves, it can for very, very many people fade, get less, take less space up in the front of your mind.
Bill Gasiamis 1:02:43
And it can just sort of head to the background a little bit and it does do that. But yes, most people I’ve spoken to have had a stroke that is 510 1520 years out. All talk about it still as if it’s something that they’re dealing with managing overcoming. Moving Beyond living with. Yes. Yeah. Yeah.
Amber Coker 1:03:11
I mean, it’s just you live with it. So yeah.
Bill Gasiamis 1:03:17
Move on I, what’s something that you want to tell some other people who are listening? That may have been through something similar to you, obviously, with regards to the stroke, but then obviously, with the news that maybe you should avoid future pregnancies, that kind of thing? What kind of advice would you like to leave them if somebody has been given that type of information that it’s just fresh for them now?
Amber Coker 1:03:46
It’s okay to mourn the Life You thought you were going to have or the future children that you thought you might have. Like, that’s okay. Hey, it’s okay to do that. And that just because you haven’t had them doesn’t mean that it’s not a lot less for you. So that, you know, Greve however you need to. And take the time that you need to, to adjust to what your new life is going to look like.
Amber Coker 1:04:31
I can’t imagine at this point, having any other children other than my son, I was meant to be the mother of an only child. I was meant to only have a boy. I always thought I wanted to go, girl. I don’t know what I would do with a girl. I have no idea. And so it’s although it’s not something that I would have chosen to only have one, it was the right thing for me. But like I said, it took four years for me to get the initial, hey, you probably shouldn’t do this.
Amber Coker 1:05:16
And all of the risks and everything to that final appointment where I had come to terms with it. And I said, no, like, final answer, we’re not doing this. It and and it did, it took four years for me to get there. And that’s okay. It’s okay if it takes you a long time. And it’s okay. If it takes you longer than four years. You grieve, however, you need to
Bill Gasiamis 1:05:49
do like that. Giving people that space to take to let the process just take the course that it needs to take, that’s important. And in that time, for some people, you might need therapy, you might want to go and chat to somebody about that support groups, you might need to do all of that stuff, which is all fine. And that will help. So I love, that gift of giving people the time that it takes. And we don’t know what the length of that is. It’s just however long, it takes for you to take
Amber Coker 1:06:27
No problem, whatever, whatever it takes. Yeah.
Bill Gasiamis 1:06:30
Thank you so much for reaching out. And joining me on the podcast, I appreciate it. I learned a lot today. And it’s very rarely that I connect the dots in, you know, things that I’ve read about because I read about the MTHFR gene 12 years ago, it’s very rarely that I can then connect the dots, and then make that a really good compelling story and give people a lot of amazing information about what they can do to protect themselves from avoiding another stroke perhaps.
Bill Gasiamis 1:07:02
And that’s what I said earlier about how the community knows. And all I’ve got to do is ask and I just love the fact that you knew that. And that you could tell that. I don’t like the fact that you had to go through a hard time to find that out. But I appreciate that you’re willing to share it.
Amber Coker 1:07:23
Yes, thank you so much for having me.
Bill Gasiamis 1:07:26
Thanks for joining us on today’s episode, I hope you’ll learn something new. To get a copy of my book go to recoveryafterstroke.com/book. To learn more about my guests, including links to this social media and to download a transcript of the entire interview. Please go to recoveryafterstroke.com/episode Thank you to everyone who has already left the review. It means the world to me, that podcasts live and thrive because of reviews.
Bill Gasiamis 1:07:53
When you leave a review, you’re helping others in need of this type of content to find it easier, and that is making a massive difference in their recovery. If you haven’t left a review and would like to leave when the best way to do it is to leave a five-star review and a few words about what the show means to you on iTunes and Spotify. If you’re watching on YouTube comment below the video I love responding to comments on our YouTube videos.
Bill Gasiamis 1:08:19
If you are a stroke survivor with a story to share about your experience, come and join me on the show. The interviews are not scripted, you do not have to plan for them. All you need to do is be a stroke survivor who wants to share your story in the hope that it will help somebody else going through something similar.
Bill Gasiamis 1:08:35
To connect with me just go to recoveryafterstroke.com/contact fill out the contact form and I will be in touch with more details about how we can connect via Zoom. Thanks again for being here and listening. I appreciate you see you on the next episode.
Intro 1:08:51
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. The opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed in all content on this website at any linked blog, podcast, or video material control.
Intro 1:09:13
This website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis. The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice the information is general and may not be suitable for your personal injuries, circumstances, or health objectives.
Intro 1:09:36
Do not use our content as a standalone resource to diagnose treat, cure, or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional your doctor or your rehabilitation program based on our content.
Intro 1:09:52
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Intro 1:10:12
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Eddie Burnias’ fear of doctors may have been a contributing factor to his hemorrhagic stroke when he was 53.
Highlights:
01:14 Introduction
01:46 The first signs of hemorrhagic stroke
09:10 Insurance challenges
14:56 Family support
23:33 Family dynamics and healthcare decisions
28:39 High blood pressure and stroke prevention
33:35 High blood pressure and its risks
40:20 Stroke Prevention in California
47:18 Nutrition, food choices, and health
51:44 High blood pressure and stroke challenges
58:15 Stroke recovery with a survivor and expert insights
Transcript:
Bill Gasiamis 0:00
Hello, everyone, thank you once again for tuning in to the Recovery after Stroke podcast. Whenever I have created something like a podcast episode, or I do a live presentation, and most recently, when I wrote the book, I get overtaken for some time by a sense of trepidation about what I’m delivering and how it will be received.
Bill Gasiamis 0:23
So it’s always a lovely thing to read a review, this time on Amazon, from someone who purchased a copy of my book, The Unexpected Way The District Became The Best Thing That Happened. The review was glowing, and it gave a five-star rating. The review titled Read a Must-read for Stroke Survivors and then continues with, I wish I had this book while I was in the rehab hospital and not two years later.
Bill Gasiamis 0:53
Bill is a great guy, which I agree with, check out his podcast. So thanks to everyone who has purchased the book already. And given the positive feedback. If you want to grab a copy, go to Amazon and type in my name, Bill Gasiamis In the search, or just go to recoveryafterstroke.com/book.
Introduction – Eddie BurniasBill Gasiamis 1:14
Now this is episode 294. And my guest today is Eddie Burnias, who has a fear of doctors so much so that he once opted to give himself six stitches when he injured his hand. And that fear of doctors ultimately contributed to Eddie experiencing a hemorrhagic stroke. Eddie Burnias, welcome to the podcast.
Eddie Burnias 1:39
Thank you. I appreciate it. Glad to be here.
Bill Gasiamis 1:42
Great to meet you, man. Tell me a little bit about what happened to
The first signs of hemorrhagic strokeEddie Burnias 1:46
So on Thanksgiving. I had my stroke at 23. So Thanksgiving being my favorite holiday, it sucked. It came on unexpectedly. I never even had any headaches or any clue that it was gonna come. My type of stroke was called a hemorrhagic. I hope I pronounced that correctly.
Bill Gasiamis 2:21
Was it a bleed in the brain?
Eddie Burnias 2:23
Yeah, it was in the back of my brain from where I’m told. So what happened is just at night, like it was a normal night, I had no symptoms coming up to it other than my high blood pressure. I got up to go to the restroom and the moment I slipped out of bed, I fell, hit my head, and got back up, thinking I just stepped wrong or I stepped on my side and they laid back down to go back to sleep.
Eddie Burnias 2:57
About an hour and a half later, I got up again this time no one’s home, my girlfriend, everybody was gone. And I get up again and again I fall. I think something’s wrong. You know, this is not normal. I try to get myself up. But now my whole right side is not working. It’s numb, I could feel it. But I can’t control it. My arm and my leg just weren’t doing what I wanted him to do.
Eddie Burnias 3:29
So I physically just got myself up with my left side and washed my face. And then I heard my stepson come in, in the house at the time. And I called him over to help me call 911 because I couldn’t even dial 911. I think everything was happening so fast. My left side worked fine. But I couldn’t comprehend how to use the phone properly. To put it in my left hand. It was weird. Anyhow, I got taken by the medics team. They took me to a hospital. Stayed there for five days. And I’ve been recovering ever since.
Bill Gasiamis 4:17
I was gonna say so you’re you had the phone near you. Are you able to tell the phone to make a phone call for you? Or?
Eddie Burnias 4:25
Yeah, the funny thing is, yeah, I brought I do have it and I have. The funny thing is that I have, you know, speed dial on the phone. So I called my mother and I told her, Hey, Mom, something’s wrong. I think I’m having a stroke. And she freaks out and hangs up on me. So now I’m like, I don’t know what to do.
Eddie Burnias 4:49
And that’s when I heard Michael come through the door. And I called over for him and we called 911. And that was taken care of but yeah, it was kind of it was kind of Have I like I’ve never experienced it. But I gotta say that this has been a life-changing experience. I mean, he’s changed everything.
Bill Gasiamis 5:12
Yeah, Eddie, that’s weird that you would call your mother instead of 911. And then she hung up on you the worst.
Eddie Burnias 5:22
Yes, you’re here, because you’re panicked. Let me backtrack because I’m a pretty physical guy. And I don’t like to I don’t like doctors. I don’t. I’ve given myself ditches. That’s how I wish I wanted to stay away from the hospital. But my mother, my mother knows that. Yeah. My mother knows that.
Eddie Burnias 5:45
So she panics when and when and when, you know, I’m calling her out. She’s like, What the hell is going on? So, you know, luckily, she got a hold of them while Michael laughed and they communicated and they worked out the details. But yeah, my mom was hung up on me at first.
Bill Gasiamis 6:03
I can’t move forward until you tell me why you what happened. And how does somebody give themselves stitches?
Eddie Burnias 6:11
Well, because I seem, to I grown up with my my stepfather. He was, he had lung cancer. And every time we went to the doctor, it was always bad news. So I grew up thinking that you know, the hospital was something that you go to whenever you something’s bad gonna happen. So I had it in the back of my mind. So one day, I didn’t even know we were outside playing or something. And I slipped and I gasped my hand.
Eddie Burnias 6:45
I don’t know if you can see it, but it gassed down. Middle East, right, right, my middle finger. I had to give myself six stitches. So and then on top of it. This is my I’m right-handed by given with my left hand, which wasn’t that good to experience. But actually, you don’t see a scar too bad. So I think I did pretty well.
Bill Gasiamis 7:08
Relations when you found your calling, that’s crazy. So yeah, I understand the whole I’m afraid of hospitals thing because yeah, that growing up and seeing, you know, somebody being unwell when they’re at the hospital can leave an impression, of course. But what you didn’t realize is he was going there for help. You thought he was going there to be unwell.
Eddie Burnias 7:39
Yeah, exactly. I know, like I attributed to every time we went to the hospital, it was like it was it was a journey for something bad. It was and there was never anything ever good. And we never went there and got good news. It was always worse or it just wasn’t a good experience for me as a kid. So like, I never, you know, even to this day, I stopped. I mean, I stopped going to the hospital.
Eddie Burnias 8:06
And I think that’s what led to my experience with my stroke is you know, my first off, I gotta say, it’s, you know, it’s a pleasure meeting gave you given us an outlet to do this. And to get out to the people to, you know, that are having similar situations. But mine, my situation, I think was preventable. Because I had high blood pressure.
Eddie Burnias 8:36
And I didn’t, you know, I wasn’t educated enough to realize that it’s really important for you to take your medicine and to keep your blood pressure down. Because I was I thought myself as Superman. I’m young. I was, you know, I’ve hurt myself, but I got it, I heal. But this thing was just I wasn’t, it wasn’t anything like I mean, I’ve experienced. It’s changed my life completely. I’ve been told I’m a nicer person, because you believe that I thought was a nice guy. That’s all.
Insurance challenges for Eddie BurniasBill Gasiamis 9:15
That’s crazy. So your stepson finally comes to find you call 911. You end up in hospital for five days, a place you don’t want to be there till you’ve had a bleed on the brain. What? So how do they go about resolving that for you or helping you with that? What do they do? What’s the if you’ve
Intro 9:37
had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be. You’re likely to have a lot of questions going through your mind. How long will it take to recover? Will I recover? What things should I avoid in case I make matters worse, doctors will explain things that you’ve never had a stroke before.
Intro 9:58
You probably don’t know what question to ask, if this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com, where you can download a guide that will help you. It’s called seven questions to ask your doctor about your stroke.
Intro 10:20
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website. Now, recoveryafterstroke.com and download the guide. It’s free.
Eddie Burnias 10:40
Here’s the crazy part. We’re here I’m in California, just to let you know, background but honestly, it’s I didn’t get much. I mean, they came to my experience there they wouldn’t let me sleep. Obviously. I just was tired. For the first three days, I was exhausted. I just wanted to sleep. But they wouldn’t let me sleep they woke me up every hour. I got to get up and walk after the second day, I’d have to get up and try to walk.
Eddie Burnias 11:15
So about the third day, I’m walking with the limp, but I’m not but I am walking using one of their rollers. You know, but I am I can move. My thoughts are there. And even you know, even to this day I do get sidetracked quite easily after my speech is there. But sometimes I forget the words. Like I had no what I was saying, or what I was gonna say, but I just couldn’t think of the word. It’s kind of frustrating.
Eddie Burnias 11:50
But then I come back, they come and tell me that I had a minor stroke, if there’s such a thing, because if you haven’t had a stroke, there’s no fucking thing no excuse my French, but there’s no such thing as a minor stroke. It was scary as hell. So, I mean, it’s just, it’s changed everything in my mind. I can talk now I can I can move again, which is great. And I feel sorry for others who have gotten even more shares than myself.
Eddie Burnias 12:23
But that’s why I’m here because I wanted to get my story out and I wanted to let people know this, this, this can be prevented, especially if you if you’re in a situation like mine, where you know, you don’t like the hospital, you don’t like going to doctors, you got you you take your medicine when you’re having a headache and then goes away and he stopped taking medicine.
Eddie Burnias 12:44
Well, you know, when it comes to blood pressure, I you have to you have to continue to be stringent about it and make it a habit. Make it a part of your life. Because otherwise you’re gonna end up in situations like mine in the making even worse. And it’s I wouldn’t wish this upon anybody. But, you know, it’s it is a life-changing moment. But it also affects everybody around you, not just yourself.
Bill Gasiamis 13:12
You know, so, yeah. So you’re, you’re getting back on your feet. Your speech has come back. And your thoughts are okay. And then they send you home, day five or day six.
Eddie Burnias 13:29
Yeah, to day five, they sent me home. , I’m on my own to the Allegheny pamphlets to read. But it’s like, you know, I had to read it myself. The doctors were telling me they wanted me to go to therapy and stuff. But let me sidetrack, also, my insurance at the time. My insurance was I was weak. I’m going through a worker’s comp competency situation on top of everything.
Eddie Burnias 14:01
And I’ve been off since April of 20. Last year, on November 1, my insurance got canceled. So when my stroke happened I didn’t have any insurance so it was it was here in California. That is not a good thing. So basically, I’m getting pushed out the door as quickly as I can without any medical backing.
Eddie Burnias 14:30
I’ll get good now I got everything squared away now but it took me a good two months after the stroke to get you know my insurance in hand and all this and that but it was tough, you know without any without. If I couldn’t speak my job would have been worse. I honestly don’t know where I would be right now because you don’t get much help without you having medical insurance here.
Family support while dealing with high blood pressure and strokeBill Gasiamis 14:56
Yeah, so you were you went home alone. As in, you went home because your partner doesn’t live with you. Is that Oh, no, no, no,
Eddie Burnias 15:07
I take it back. I’m sorry, I went home with my family. So you know, not only that but what I mean, what I mean by alone is I didn’t have any doctor. The primary care.
Bill Gasiamis 15:18
Support, you just went home. Yeah.
Eddie Burnias 15:21
So I was, you know, trying to try to educate myself. And that’s how I came upon you, I went to the, I went to Barnes and Noble and tried to get books there, I went to the library and tried to get books to, you know, read up on my case in strokes, and when, because I have not experienced it, and none of my family has had one.
Eddie Burnias 15:42
But I came across a new one day on my website. And, you know, I, you know, I’m a hard listener now. So I’ve been listening to all your podcasts. And, you know, it’s, it’s, how should I say what you’re doing is a godsend, because you give people that that don’t know, like myself an avenue where we wouldn’t have won. If I get emotional.
Bill Gasiamis 16:16
I’m glad it’s helpful. And, look, when I went through it in 2012, I went home the same as you. The only difference was my insurance, all that kind of stuff was fine, as far as that was concerned. But we went home, with no idea, no clue what to do. What? How do you how do you be somebody who’s got bleeding in the brain? How do you like to interact with the world, it was a mess, right?
Bill Gasiamis 16:43
And in 2012, there was nothing on the internet, I couldn’t find any help you could find a book in the bookstore, but you couldn’t do anything. There was a lot of stuff about peripheral things you can do to support your weight, to lose weight to improve your fitness, you know, there was a lot of stuff around all the things that we needed, there was a lot of stuff that around all the things we needed.
Bill Gasiamis 17:10
But they weren’t sold as being specifically for people with brain injuries or with stroke, injuries, or any of that stuff. So I had to go on that journey myself as well, and learn and research and research and research and be my advocate, and try and find other people that were like me, it was impossible. So I thought stuff. I thought to myself, I’ll start a podcast and I’m sure I’ll find people to come on, I’ll learn from them, they’ll learn from me.
Bill Gasiamis 17:38
But I didn’t realize how, necessary it was I thought I was just solving a problem for me, I didn’t realize I was solving a problem for a whole bunch of other people. And I’m glad I am. I found my purpose through this work. Like I appreciate the fact that it exists. And that I get to do it. And it led to the book that I wrote, you know, it led to me putting together all that new information that I had about how can I heal from a stroke. How can I overcome that?
Bill Gasiamis 18:10
It led to me going well, other people need to know about what I’ve learned and what helped me I don’t know how I’m going to reach them. The podcast is a good way to sort of start and talk about the topics that I want to talk about with people but you can’t in a podcast you can put it all in one place like in a neat little package and give all that information to people but you can’t put it in the book. So yeah, that’s how it is.
Eddie Burnias 18:42
Order I just ordered your book. So I bet exactly what I got I have it on Audible but I ordered a hard copy. Also though so the hard copies come in the mail but I already started to divert your read half of it. There’s a lot of useful information in there I mean really, like first off I didn’t even know what type of stroke I had.
Eddie Burnias 19:05
Without your seven questions, I wouldn’t have known that like there’s those are very helpful because when you’re going through and just say I’m so new to it that I’m very in my third month of recovery so I’m a baby when it comes to this stuff I’m you know I’m soaking up knowledge here and here and there. And like you said 2012 2024 is not much there’s not much information on stroking out there.
Eddie Burnias 19:32
There’s probably more than there was in 2012 but there’s not much there isn’t there you know like you said it’s called a comparison guys compared to what you were you went to there is more but it doesn’t get to how you should treat this up, what you should eat, what steps you should take To whom you should talk to how to involve everyone around you.
Eddie Burnias 20:05
Because that’s everybody’s, it’s a multi everybody in your family. You know what I mean? So one thing is, it got us closer to my family, which is a blessing. You know. So the only bad thing for me that I can say is that in the experience itself, I’m still my right side of my body is still not fully cooperating.
Eddie Burnias 20:33
But it’s, I mean, I’m farther along than I was two months ago, I walk, you know, three to five miles a day now. We’re the first month I was, I mean, the first week, I was barely able to stand up. You know? I do.
Bill Gasiamis 20:49
So with the family with the family, you guys. But so you’re a nicer guy, you things with the relationships are better. Did that just happen? Or did you go after making those things better? What are you thinking in the background? Like, me, when I was doing that, I was thinking, I might not be here in six months, I better make everything good. How do you get to it?
Eddie Burnias 21:17
Well, mine, a CMO I am I’m gonna quit. You know, I’m stubborn. I’m a first-generation Mexican, American. And we’re not men don’t cry. Men don’t. Are we don’t show affection, we provide. And that’s, that’s how that’s how we show we love each other. But this has changed it. So you know, it’s gotten me more open.
Eddie Burnias 21:48
I talk more. Before I had an issue, I would, I would keep it in and commitment came to the Gaussian day know the word, but I can’t think of it right now. From pop. Exactly, exactly. Thank you, you remember, Nostradamus, but anyhow, we, we do that? You know, and it’s, it’s not good. Because it eventually eats that, you know, and it’s, it’s and people you shouldn’t only do are your family not you know, I’m all for therapy and therapists and, and help.
Eddie Burnias 22:25
But if you’re dealing with something, I think your family, especially the ones you love the most should be part of it, you know? And where I’m from, it’s not like that. It’s like you You don’t need to, you know, why do I need to tell you my problems, because you’re not going to be able to solve them I have to solve them. That’s the attitude that we know I come from. And it’s not that it’s not a good attitude, it’s not a good attitude to have.
Eddie Burnias 22:52
You know, vocalizing it vocalizing what I’m going through with my family is it’s open doors. You know, it’s gotten me, I’ve met people that I probably wouldn’t have ever met had not had the stroke. I’ve had I’ve gotten boost intel that I would never, ever, ever have had to ask and help me. Because I was not the kind of person to ask for help. I do everything myself. But, you know, what showed me like, Who’s, who’s there for you? You know, and it’s important to take and give back.
Family dynamics and healthcare decisionsBill Gasiamis 23:33
Yeah, that’s important, what you just said, to give back. And that’s, that was what happened to me, I feel, I don’t feel obliged to give back. But I feel like I must give back. Because, like you people came out of nowhere. They did a whole bunch of things that I never expected them to do. People I never knew. And then it’s like, and on a second, I’m not sure I would have helped you if you were in a bad way. I don’t know if I would have done that.
Bill Gasiamis 24:03
Do you know, I really don’t know, if I would have stepped up, therefore would have been that kind of guy. So I appreciate it. And now I think I want to step up and be that kind of guy. I want to make sure that when people need help no matter who they are, if I can offer something, I don’t care what it is going to offer it instead of walking away and letting somebody else take the responsibility to take that job.
Bill Gasiamis 24:27
I’m happy to go and do what I can for people. It’s far better. I completely agree with you. What’s interesting about you is you see it from a Mexican background, right? However, I know that the Mexican family is the most important thing. And yet you’re in a family you’re in a Mexican family.
Bill Gasiamis 24:48
You guys are all close in a way by your communication is keeping you makes you was it making you kind of like a little more distant even though you’re close. to your family and your family’s importance, it seems like the lack of communication that you were doing was sort of keeping you a little bit outside where you wanted it to be.
Eddie Burnias 25:10
Yeah, well, it’s like I said, we’re close. But we’re close in in. We don’t talk, we don’t talk about our problems. That’s just something we just don’t do. Because you’re, you’re we know you’re a man, your oil, the way your raises you, everybody has problems, why put your problems on anybody else? You are a man who solves your problems. But sometimes you need that extra help, you need help to solve your problems.
Eddie Burnias 25:41
Everybody does, you know. And that’s, that’s the thing. So that’s what this has done. It’s, it’s been more vocal. It’s lately it’s, my wife says, now that I talked too much. So that, you know, she’s all in before you never do these. Tell me what you asked me. I mean, I can’t help but now. It’s like, I tell her everything. How I feel I’m feeling if I, if I you know, before, if I had a headache, or I wouldn’t feel well, I would, I would keep him to myself.
Eddie Burnias 26:14
And pretty much it’d be grumpy. You know, I think it would if it wasn’t I would take out the grub my illness or whatever up on my family that is that close to you. And now it’s different. It’s, you know, we talked, he has one skit about his uncle and his aunt, were you saying that? That guy that his uncle is sick, and his wife keeps telling them, You need to go to the doctor, and you need to get you know, get a colon check.
Eddie Burnias 26:47
And he goes, that’s not something that we need to do. I mean, I have nothing, nobody touched me there. And so she finally convinces him to go. And he ends up having into finding a tumor. And so now, he gets all he goes back, they go back home, and he’s all the See yesterday, I was all fine.
Eddie Burnias 27:06
Today, you made me go to the doctor and I got cancer. You still, it’s like, that’s how we are? We’re, we’re not, we’re not we’re not pro-pro hospitals or pro, like their fists or anything like that. Proactive. Yeah, or proactive. It’s just like, we were more reactive, we wait and or we’re waiting for the bad news to come. You know, we’re waiting for that, instead of being proactive, and then just concentrating on the good, because there’s a there’s a lot more good than bad.
Bill Gasiamis 27:46
And then if you know that something is there, you can actually take action and resolve it, maybe you can treat it, maybe you can prevent it from happening. You know, that’s the whole thing about knowing about your blood pressure needs, since I know about it, and I have medication, I can prevent a stroke from happening.
Bill Gasiamis 28:06
If I pretend that it’s not happening to me and that I don’t have a problem with my blood pressure, then I’m looking at the cliff, I could fall over the cliff any moment because I’m not paying attention to the sign that says don’t step over there. You were doing that, that you felt like it’s not such a big deal, you made a medical decision about what it means to have high blood pressure that you shouldn’t have made. The decision was, well, this is not a big deal. I don’t need to take my medication. Yeah, it’s very common, though. Very common.
High blood pressure and stroke preventionEddie Burnias 28:46
Yeah, that’s what it is. A lack of education is a lack of education. Because like I said, my, my, I think my stroke could have been preventable, because I had medication, I had everything at my hand at everything I needed to take care of myself, the help, I had the doctors, I had everything I needed, but I chose to be a knucklehead and not follow directions as I should have. I will take my medication when I start feeling down or start having a headache here.
Eddie Burnias 29:20
I would take my blood pressure medication and then they would go away and then I’d stop. And it just got to the point where I wasn’t taking I wasn’t checking my blood pressure either like regularly to see how high I was or how low I was. Now it’s like I take my blood sugar every day every morning just to make sure I’m taking my medication and my blood pressure is down to normal like it shouldn’t be.
Eddie Burnias 29:48
But I wouldn’t have known that and how important it is to, you know, monitor something like this. If I hadn’t had this job Um, the same thing with with my friends. You know, I got buddies that are same way, same age, close to the same age that are just as knuckleheaded as I am, who think they’re Superman, you know, who just think, you know, I’ve hurt myself, I’ll heal. But there are some things that you just can’t heal.
Eddie Burnias 30:21
There’s something that you can’t control that is beyond your means that is beyond your younger self, that you need someone with medical expertise to help, you know. And when free and the blood pressure thing that’s, that should be taught in school. Oh, man, that really should because it’s when they say it’s the silent killer. It is.
Eddie Burnias 30:43
Because I had no, I didn’t have any idea. Or even any, any, like, I should say, any symptoms leading up to my stroke. That night when I went to bed, I was normal. I was like talking to you just like I am now. And then I went to bed and all of a sudden, I couldn’t use my right hand. And I can’t use my right side. It’s that that’s how silent is because it got you like that.
Bill Gasiamis 31:19
When they gave you medication, and they realized that you had high blood pressure, do you know how high it was? To know when the?
Eddie Burnias 31:27
Yeah, my I was one? I was averaging 185. Over 130. So it was high. Yeah, it was high-end up creating crazy parties. Yes, last just last night. I’m over here at my buddy’s house. And we’re talking about this because I’m trying to preach to everybody now. One of my buddy’s brothers comes in and we check our time I bring my blood pressure checker with me all the time. Now I have one in the car.
Eddie Burnias 31:55
And we sit down and I have it here with me and the ugly man started shitting giggles and is trying to check your blood pressure. His blood pressure was 195 or 140. Like, oh my God, that’s normal. He says all that’s normal for him on that, you know, you need to go to the doctor you need to deal. You don’t understand you. You’re skating on thin ice here. Eventually, its dice is gonna crack trust me, you’re gonna, you know, something like that.
Eddie Burnias 32:28
And that’s how knucklehead I was like, these are my friends. And they’re just as bad. You know, when it’s because of lack of education. You know, it’s, it’s a hassle. It’s a hassle also to have to miss work or miss something just to go to the doctor and wait two hours, you know, to get it to be seen and to be treated. But, you know, if you look back, I’d rather do that than have them on the other side of the coin, where you’re getting hurt or you have to be in the hospital and then there’s nothing you can do.
Eddie Burnias 33:06
I could have gone the other way my stroke like this a minor but it could have been a lot worse. I couldn’t get it where I can’t speak because I’ve seen that, you know now, I’ve seen other people that have gotten more that when they can’t walk or even when they talk they’re there their speeches change. Half of their faces are numb a lot.
High blood pressure and its risksBill Gasiamis 33:35
Did your friend go to get it checked out afterward?
Eddie Burnias 33:39
The way that the way we got him to go. We told his wife, we had a goal. We had a goal above his head to go to the boss. Yeah, because otherwise, you know, he would have been he would have been deciding, you know, if I’m good. I don’t have a headache. I’m not I feel good. That’s exactly how I felt. You know,
Bill Gasiamis 34:03
many years ago, I was volunteering for the Stroke Foundation here in Australia. And they used to do a program where they would go into one of the big shopping malls. And they would set up a blood pressure check stand. And we would encourage people to come over, put their hand in the machine, check their blood pressure, and go away, you know, for free. It was no big deal.
Bill Gasiamis 34:30
People come over and then there’s guys come over and the blood pressure is 190 over 130 Yeah. And it’s like how do you feel man? Not feel good. Okay, so what we’ve found is that your blood pressure is 190 over 130. And what we suggest is that right now, the first thing you do is you leave and you go to the hospital and they’re looking at you like a weird because dude is trying to buy some stuff, you know, with, with a family or have come to dinner or whatever, and I’m going home.
Bill Gasiamis 35:09
And that is double what it should be. And you should go directly to a hospital and get that checked out because you’re at risk of stroke. And the guy’s got no clue that he’s at risk of stroke and doesn’t feel like he is at risk of stroke and probably never met anybody who had a stroke because of high blood pressure. And convincing him to do that is difficult. But hopefully, and then we can’t make them go to the hospital, we can’t call the doctor or anything.
Bill Gasiamis 35:42
But we can encourage them. So we give the guy a massive shock, just walking past and getting a high blood pressure rating and then being told that he’s at risk of stroke. So it’s hard to comprehend that, that if I feel okay, if everything seems normal, if everything is, is my everyday life, like if anything is just the same as it always has been, it feels very difficult to try and make that person bridge the gap from actually I’m not okay I need to take action. This is potentially very serious or life-threatening.
Eddie Burnias 36:25
Yeah, that’s the thing about blood pressure. It’s hard to comprehend the fact that because it doesn’t give you any symptoms, you’re not okay. You’re you know, you’re not, you’re you’re you’re you’re you’re right, you’re riding around with an expiration date on your hand. And I mean, we all are, in the long run, but we’re talking about this is going to shorten your expiration date. It’s like bad milk.
Eddie Burnias 36:49
Yeah, believe me, your milk in there for too long that milk is going to start to stink. You know, that’s what’s happening. You’re not taking into consideration the fact that internally, you’re not doing good. You might be all good on and 30 on the outside. But internally, it’s, you know, it’s a hot mess. And that’s what that’s where I was, I was, you know, I was a hot mess. I’m 54 years old. So I started before it, you know, I’m a little overweight. Now. I’m working on that now.
Eddie Burnias 37:22
But, you know, I just I barely started gaining weight the past 10 years, I was normally around 171 80 I jumped up to 190 Mamba to 10 now. But it’s a you know, I come from, I’m an athlete, I grew up playing basketball and football and baseball my whole life. So I’ve always been active. But the older you get, the less active you become, it’s just natural, and there’s nothing you can do about it. You can’t run as fast as you can, and you can’t jump like before.
Eddie Burnias 37:59
So it’s gotten to the point where now I just getting out and walking, you know it. I preach this to everyone. I mean, being sedentary is the worst thing you can do to yourself, to your psyche to those around you if you care, you know do for them. Because they’re depending on you know. So I mean, first it’s selfish not to start thinking about others like that, especially you if you love them, because
Bill Gasiamis 38:34
you’re depending on them, but they’re depending on you, but they want you around, and they don’t want to lose you early and for no reason. For somebody that’s preventable.
Bill Gasiamis 38:44
They don’t want to lose you, you know, I’m, I’m 50 this year, and my, in the last 10 years, I met that I’m at that stage where everybody who I grew up with when we were doing all the wrong things smoking drinking, all the people who continued to smoke and drink into their 40s and, and live an unhealthy life are all suffering now are all suffering heart attacks, of loss to friends in their 40s from heart attacks, or three, actually, three.
Bill Gasiamis 39:20
And more people are coming on board now that are having heart attacks. Who knew of other people in their circle the same age as us who had a heart attack 12 months ago and didn’t see that as a sign to do something about it? They were overweight, they weren’t eating well, they weren’t healthy, but it still wasn’t a sign to do something about it.
Bill Gasiamis 39:43
Yes. So strange, you know, to say to notice people I used to and now I see people that are like me who’s had a serious health condition and I compare myself and I say okay, there they came similar back right around two May they work a similar job to me. They have similar habits to me. They’re a similar age to me, and they’ve had this health condition that could be made.
Bill Gasiamis 40:11
I need to make sure that I’m doing the right things to avoid that I need to take what happened to them as a lesson and take action. Or do that now, but I didn’t do it earlier. Earlier when we were getting sick. I was like, what is gonna happen to me? It’s gonna Yeah, fortunately, happened to them.
Stroke prevention in CaliforniaEddie Burnias 40:32
Yeah, exactly. When you have that Superman mentality where, you know, it’s like, yeah, they probably don’t eat correctly, or they, I don’t know, there’s always something that genetic on their side or something. You could always make excuses. There’s always something but you always do you know, it’s a it is going to happen.
Eddie Burnias 40:51
In May, you’re just, you know, you’re you’re buying time, is what it is. No one’s known Superman, no one’s untouchable. If it escaped, it’s gonna get you get your time, it’s your time. But if you can prevent, you know, you have to go to the doctor and incurring all these fees and bills and extra bills and stuff. You know, I, you got to me, you got to unselfish notch.
Bill Gasiamis 41:20
That’s the best way to go about it. Prevention is the best way. So yeah, you’re off work. Is that situation going to be resolved soon? Do? Do you know, when that’s going to?
Eddie Burnias 41:34
Yeah, I have a hearing for that. Next month on the fourth. See, this is all happening. So it’s like, I’m in the inception of everything. So you know, I’m, it’s great. But what I was gonna say is that it’s been a blessing for me that having a stroke has helped me. It’s allowed me to get closer to a family member, one of the most important, but it’s also allowed me to know I’m starting a support group.
Eddie Burnias 42:06
So I have I have, like two other friends that that they and I get together. That’s why I was at my friend’s house last night. And we get together and we, you know, well, now we’re talking about each other’s physical ailments and whatnot. Where before we would, we wouldn’t talk, we talked and watched a game or, drank or played poker or something. Now we’re getting no because it’s happening.
Eddie Burnias 42:31
I want my other buddy, he just, had, like you said, a heart attack. His was is, was a heart attack, I probably would, he would have told me what is similar to a heart attack. And they kept him in there for observation for two days. But yet again, he’s 15 years old, he and I grew up together, drinking, smoking, and doing what normal kids do.
Eddie Burnias 42:57
But there comes a time when you got to you got to stay and buckle down and not look at your physical ailments and take care of yourself. Take care of yourself for the future. We’re still here, especially here in California, where the cost of living is exorbitant. We work on it, we’re constantly worrying about money, you know, money that we have to have, you know, all the money in the world is not going to prevent you from having a stroke.
Eddie Burnias 43:26
And all the money in the world is not going to make you happy. Because I’ve gone I’ve been to that point, I begged I, you know, I made a million dollars a year, you know, for consecutive years. And I’m not bragging because that’s not what this is about. But it doesn’t make me any happier. You know, it’s not that money doesn’t solve everything. Money can help. But it’s not the end all be all. You know, because most
Bill Gasiamis 43:54
we’re wearing California are you in where our Bay Area? Okay, area. So in the Bay Area, you’ve started this particular support group. Are you Yeah, how are you finding people? What kind of people are you looking to find? There’ll be people listening here who are from the Bay Area, they might want to reach out.
Eddie Burnias 44:15
Yeah, so far, it’s like I said, it’s just, it’s just a couple of buddies and me who started meeting on Thursday night. And just just kind of to get them we’re starting to get the word out. We’re starting to make some pamphlets and get out my number I believe we have attached my numbers, you know, it’s available. And if anybody wants to talk or maybe you know, have questions, I’ll do my best to answer them.
Eddie Burnias 44:46
I’m not by any means a licensed physician or even an educated physician for that matter, but I do have a lot of experience between, you know, the people that I think experiences is the most. And the best education you can get. You know, somebody who’s done there has been there, done that, I would rather go, you know, and listen to them than somebody who’s learned from a book, you know not to get don’t get around that you don’t book learning is great.
Eddie Burnias 45:21
But if somebody’s had the experience hands-on first-time experience, I’d rather learn that. And that’s all it does. But like I said, when I had my stroke, I couldn’t find any information. It is so hard to find information regarding, you know, how to treat yourself or what you should eat.
Eddie Burnias 45:43
And then the doctors the word, my situation, I didn’t have the backing because I didn’t have any insurance at the time, then I didn’t know what I should do, or shouldn’t do, what I should eat, or what I shouldn’t eat. And that’s like your bookings you know, delves into that.
Eddie Burnias 46:03
And it, which is great. But I didn’t have that, you know, I’m barely getting it now. And I’m here to help people that, you know, before we even get to the point we gave you haven’t shown, let’s start with what you shouldn’t be eating, and we shouldn’t be. Because here in California, I mean, you’re from Australia, but here, you turn on the TV.
Eddie Burnias 46:26
Every commercial is fast. I mean, every commercial, it’s anything I’ve watched, I’ve watched television in Europe, and even UK and there’s no fast food, then they don’t even show fast food. Here every commercial is faster. You’re you’re getting a no. And during the United States, the food that they were being, you know, served is not good. It’s it would be it would be illegal in other parts of the world.
Eddie Burnias 46:59
But yet, we’re consuming this. And that, to me it is my mother, because that goes with everything that goes with, you know, that attributes high blood pressure, attributes to weight gain, attributes due to heart disease and cardiovascular disease.
Nutrition, food choices, and healthBill Gasiamis 47:18
There’s a great book called Why We Get Sick. Okay, so for anyone listening. And it’s probably the best book for somebody who’s had a stroke to read about nutrition specifically. And when I read it, it was just solving. It was just explaining so many things. It’s by a gentleman called Benjamin Beekman Benjamin. And it’s available on Amazon and all those places, and probably you can get it from bookstores.
Bill Gasiamis 47:56
And it’s not a hard read, it’s a very easy read. It’s not a very thick book. But it just goes into so much detail about how one thing leads to another leads to another leads to another. It talks about how you get to experience high blood pressure how people get to become diabetic or how they get to have a heart attack.
Bill Gasiamis 48:23
And it’s all related to food. And one specific thing that he talks about is sugar, the amount of sugar that we consume, and why it’s important to decrease the amount of sugar as much as possible, how much of it we eat, and then how often we eat it. So Why We Get Sick is probably my first favorite nutrition book health book. And it’s really important to very it’s a
Eddie Burnias 48:59
I know, in your book, you mentioned like your pasta after you had your Shoku you know, the pasta wasn’t good for you, in itself in the era of food coma. Yeah. You know, and I feel you on that. Because my thing is not possible. Where I breathe, you know, we get the greasy meat, the tortillas, and all that.
Eddie Burnias 49:26
It’s and it’s you know, I as soon as I got out as soon as I was able to eat on my own, I wouldn’t got you know, the biggest burrito I can get. And man after I was I was out for two days, you know, and you you still feel healthy. You know, it’s it’s weird because you didn’t think I never thought about that before. You know, I would I would I would, you know, late nights. You know when I was younger, I’d go out late at night to kind of buy a taco truck.
Eddie Burnias 49:56
I don’t know if you are familiar with that out here but do I Find a taco truck and we’d be down tacos? You know? And that’s just leading to what you’re just saying. It’s a domino effect. And you know, I’m playing Domino’s with my life and I don’t want to do that, you know, but you don’t know any better.
Bill Gasiamis 50:14
I spent some time in LA, in 2000. And okay. And men’s house. I was in heaven in a way, because it’s not food that we can get. We can’t get Mexican food a lot in Australia. Although now there’s a Mexican taco place everywhere. It’s really popular. But I mean, we’ve seen a really big boom, but back in 2013, we hadn’t seen it.
Bill Gasiamis 50:39
You just buy the cheap Mexican type of food from the supermarket you bring it home and it doesn’t seem thing. But But I know what you mean about the taco stands the everywhere little shops, little windows in walls.
Eddie Burnias 50:56
So it’s like, you were where I’m from, we can get it anytime, any time of the day, any time of the night. You want to get a taco. But it’s a greasy taco, which you know, is that and then there’s different types of taco but it’s, it’s that well, we shouldn’t be doing it. And I think in school, this shouldn’t be happening with the kids is teaching them young. You know, Hey, man, you stay away from, you know, it’s okay.
Eddie Burnias 51:21
It’s okay to eat in moderation. But don’t overindulge. Don’t, don’t go in to have, you know, have one soda, if you’re gonna have a soda, don’t go have a six-pack. When you get older, you know, don’t go have 612 12 beers, and then go out and have tacos and greasy burgers at three o’clock in the morning regularly. Because that’s not nutritionists. That’s not good.
High blood pressure and stroke challengesBill Gasiamis 51:48
Do you have children?
Eddie Burnias 51:50
Yes, I do. Yes. How old are they there they’re grown, my boys are grown. My, my oldest son is 32. My youngest is 27. So there I have three of them. And my other ones in 1,000,029. But they’re, you know, I’m on them now. I wasn’t before you know, because they’re big, strong kids or you’re like I Oh, you know, I was when they were I was very you know, they’re all you’re benching 340 pounds. You know, and to me that’s how I grew up.
Eddie Burnias 52:25
I thought that was that’s how you’re strong. You’re strong you’re strong guy. But doesn’t matter how much cool you can live man. If you’re not taking care of your inner inner body and your inner soul. It’s not You’re not strong you’re not there’s no strong, there’s no amount of weight that’s going to give you is going to help you when it comes to subconscious.
Bill Gasiamis 52:46
Strengthen muscles comes with many, you know helps you with some things but there’s very you have to strengthen your character you have to have strength in your Exactly. In your emotional state, you have to have all sorts of different strengths.
Bill Gasiamis 53:03
And that external muscle look is kind of good for meeting the right girl or Yeah, showing that you’re good, good genes and you’ve got good quality reproductive organs and all that kind of stuff, but and it helps to keep you fit and well it does. It’s really important. But it’s not the only one we need to broaden out.
Eddie Burnias 53:30
And eventually, all that fades like everything else in life. It fades because I was a big man pretty I was a pretty man when I was a young kid. You know? Look at me now. I’m not as pretty I’m still pretty but that was you right? Yeah, but
Bill Gasiamis 53:50
um, but what was the hardest thing about stroke for you? So far? What do you think’s the hardest thing so far?
Eddie Burnias 53:55
The hardest thing for me is number one is finding information on how to know, about stroke and stroke itself what physically and mentally happened. That’s that was the hardest that is the hardest thing. Because I’m like I told you I still don’t know what type of talk I’ve had.
Eddie Burnias 54:16
I was barely told this by my physician because I barely got my primary care in order. But information number one, it’s hard to because there’s nothing there’s so lack of information out there that can help people prevent themselves from being in a situation like mine. That it’s it’s it’s almost criminal. It is because if you know to prevent someone from hurting themselves, by all means, man, let’s get it out there.
Eddie Burnias 54:52
You know, holding it back is not helping anybody or anything. But yeah, just getting the information is hard It was the hardest thing. The second thing is, the fact that you’re changing, you change. It’s like a light switch like I’m a different person. You know, I can feel it myself. I’m not as why, like I said, I’m more vocal, I am more emotional. I know that comes along with the stroke that, you know, the motions.
Eddie Burnias 55:25
Like I was like, read about we, you know how you would cry at anything, not in the same way. The other day, I was watching a movie and I was always crying, like, like a 12-year-old little girl. And my wife comes in and she’s like, What are you doing? And I’m all Forrest Gump man, Hey, Jenny, you know, she’s leaving him. So it’s changed and it changes everything. But it’s, you know, there’s, there’s good points, but you know, but it’s hard.
Eddie Burnias 55:56
This is an easy getting up and walking. The first week or two, when I started having, you know, you have to do it. But when I started doing it, it wasn’t easy. Because I could, you know, you I would walk but I would get a sore bath. My body would always have, it feels like you’re half of my body’s working and the other one isn’t. So you have to focus, where before you can just walk without thinking. But now it’s like, I gotta focus.
Eddie Burnias 56:30
Even to this day, if I you know, I can’t run that’s in that so much want to run that’s, that’s my goal is I want to be able to run, I can set my job. But I gotta focus on where I’m putting my foot because if I’m not, it just goes in a diary. It just does what it does. I can’t control it. I have a feeling on my arm. But on the bottom of my right leg, it’s like, you can pick me and I won’t feel it, you can hit me with a stick. And it’s like a mountain. I don’t like a little brush.
Eddie Burnias 57:06
But it’s like, you know, I have to focus on things now that I’ve never thought of before. Before it was just running was, you know, you run that walking, but now it’s like you got this, I can think of the steps I’m taking if I’m walking up a hill, or the pavement is uneven, I have to calculate that if I don’t have like a normal strip.
Eddie Burnias 57:29
It’s like when you’re walking in you forget to call on on the rug. Well, that’s happened quite a bit with you know, because I’m not, you know, I’m thinking that I’m better. And I’m thinking okay, here, I’m going in I walk, I’m walking on uneven pavement, but my mind is not registering it because I don’t feel on the right side, like I did before, you know, before you could feel it, or you can even see the heel coming.
Eddie Burnias 57:53
But you don’t have you don’t see a protrusion coming out of the concrete or whatnot. And it’s, it’s a process. So now you have to be aware of everything about your surroundings, where you’re going what you’re doing before that’s something you just don’t take into consideration, and that takes a lot more.
Stroke recovery with a survivor and expert insightsBill Gasiamis 58:15
That takes a lot more to pay attention and do the walking and paying attention at the same time. What stroke taught you?
Eddie Burnias 58:26
So far, because I’m so new to where it’s taught me that, you know, life is shorter than we would think. And what do you do with it if it is hugely important? You know, all the money in the world, all the material things don’t mean anything. It’s it’s what you do to get emotional. But yeah, it’s what you do you know, everybody has a gift. And, and I can use it.
Bill Gasiamis 59:09
That’s important. So that’s leading to my next question, which is what do you want to tell other people who have had a stroke and listening to do I just started their journey? Or maybe they’re a few years into their journey? What do you want to tell them?
Eddie Burnias 59:26
That they’re not alone? That there are others out there like us and I know there are people that get like, Why me? Why my attitude? And I don’t want to be here. That’s not the answer. There’s someone out there for you and there’s people that will listen.
Bill Gasiamis 59:57
Reach out for help.
Eddie Burnias 59:58
You have to excuse me, I’m not used to getting emotional like this
Bill Gasiamis 1:00:04
It’s new. I know, I’ve been there. It’s good that you’re allowing yourself to be that way, man, it’s understandable, it’s uncomfortable, and it will get better. It’s also going to be okay that it’s days a little bit as well that you’re going to be a little bit emotional. It’s really important, I think, for anybody but for men to be emotional.
Bill Gasiamis 1:00:32
And you’re gonna want to think it does it permits other men in your life to be emotional as well. Like, I cry in front of the kids all the time now and my wife and my kids are 27 and 23. So they have an example of how you can be vulnerable, how you can cry if you need to cry, and how if something saddens you it’s okay to express it and to be saddened by it. And not to you don’t need to put a brave face on all the time.
Eddie Burnias 1:01:07
Like I was saying, My son is 32 years old. I’m 54 he barely saw me cry, for the first time. You know, that’s yeah, this whole situation, got us closer, it has opened doors that I never thought, you know, that probably would have never been opened before. You know, I’ll be honest with you, I wouldn’t have I wouldn’t have been as vocal before.
Eddie Burnias 1:01:37
My kids, you know, especially boys are just like, before, you know, like I’ve gotten, you know, they scrape themselves, I don’t cry, you know, you’re not bleeding, you’re fine. You know, that type of attitude. And it’s, and now I have grandchildren. And if I don’t want to, I don’t want that same attitude. We need to change.
Bill Gasiamis 1:01:58
Yeah, I know, you’re looking after your health and you’re making sure that you’re taking your medication.
Eddie Burnias 1:02:03
Yeah, definitely. Definitely. Am, with people like yourself, help with your book, and your podcast. You know, this is an ongoing journey, and when I’m glad to be on, and I thank you for your help.
Bill Gasiamis 1:02:20
That’s my pleasure. Mike, thank you so much for being on the podcast. Thank you. Thanks for joining us on today’s episode, get a copy of my book by going to recoveryafterstroke.com/book. To learn more about my guests, including links to their social media, and to download a transcript of the entire interview, go to recoveryafterstroke.com/episodes.
Bill Gasiamis 1:02:44
For everyone who has already left an amazing review, be it on the podcast app that you listen to. You have commented on a YouTube video or you have left a book review. It means the world to me, that podcasts, books, and authors thrive because of reviews. And when you leave a review, you’re also helping others in need of this type of content to find it easier. And that is making a massive difference in their recovery.
Bill Gasiamis 1:03:14
If you haven’t left a review and would like to do so, just go to your favorite podcast app, leave a five-star review, and a few words about what the show means to you. If you’re watching on YouTube, do comment below the video I love receiving comments I respond to as many comments as I possibly can. At the moment I’m responding to all comments, so I would love to hear from you.
Bill Gasiamis 1:03:36
Subscribe to the show on the platform of your choice. If you’re on YouTube hit the notification bell so you can be notified of new episodes. If you are a stroke survivor with a story to share about your experience, come and join me on the show. You do not have to plan for them all you need to do to qualify as a stroke survivor. And you want to share your story so that you and other people can go about their recovery a little bit better.
Bill Gasiamis 1:04:03
If you are a researcher who wants to share the findings of a recent study or you’re looking to recruit people into studies, you may also wish to reach out and be a guest on the show. If you have a commercial product that you would love to promote on the podcast that is related to helping stroke survivors. You can also join me for a sponsored episode of the show.
Bill Gasiamis 1:04:23
Just go to recoveryaftershow.com/contact Fill out the form explaining which category you belong to and a little bit about yourself and your story. And I will send you some more details of how we can connect via Zoom. Thanks again for being here and listening. I do deeply appreciate you. See you in the next episode.
Intro 1:04:43
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals’ opinions and treatments. Protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocols discussed.
Intro 1:05:00
All content on this website and any linked blog, podcast, or video material controlled by this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis the content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.
Intro 1:05:23
The information is general and may not suit your personal injuries, circumstances, or health objectives. Do not use our content as a standalone resource to diagnose treat, cure, or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.
Intro 1:05:30
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Intro 1:05:30
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Hemorrhagic Stroke Recovery: A Comprehensive Guide to RehabilitationIntroductionNavigating the path to recovery after a hemorrhagic stroke is a critical journey that requires precision and dedication. In this guide, we delve into the multifaceted aspects of hemorrhagic stroke recovery, providing a comprehensive resource for individuals seeking insights into the rehabilitation process.
Understanding Hemorrhagic Stroke RecoveryRecovering from a hemorrhagic stroke involves a multifaceted approach that addresses physical, cognitive, and emotional aspects. Each stage of recovery requires a tailored strategy, emphasizing the importance of personalized rehabilitation plans.
Early Rehabilitation MeasuresPhysical TherapyIn the initial stages of recovery, physical therapy plays a pivotal role. Therapeutic exercises are designed to improve motor skills, balance, and coordination. The focus is on rebuilding strength and mobility, setting a solid foundation for further progress.
Speech and Language TherapyFor individuals experiencing speech and language difficulties post-stroke, speech therapy becomes an integral component of early rehabilitation. Therapists work on enhancing communication skills and addressing swallowing issues, fostering a gradual return to normalcy.
Cognitive RehabilitationMemory and Cognitive ExercisesHemorrhagic strokes can impact cognitive functions. Engaging in memory and cognitive exercises stimulates brain function, aiding in the restoration of cognitive abilities. This tailored approach contributes significantly to the recovery of mental acuity.
Emotional SupportRecognizing the emotional toll of stroke, rehabilitation programs incorporate mental health support. Psychologists and counselors play a vital role in helping individuals cope with the emotional challenges that often accompany the recovery process.
Long-Term Recovery StrategiesAdaptive TechnologiesAs recovery progresses, incorporating adaptive technologies can enhance independence. Devices and technologies designed to assist with daily activities empower individuals to regain control over their lives.
Continued Physical and Occupational TherapyMaintaining a commitment to physical and occupational therapy beyond the initial stages is crucial. Regular sessions contribute to sustained progress, preventing regression and promoting long-term recovery.
Hemorrhagic Stroke Recovery Success StoriesReal-Life TestimonialsSharing success stories of individuals who have triumphed over the challenges of hemorrhagic stroke recovery provides inspiration and encouragement. These narratives offer a glimpse into the possibilities of a fulfilling life post-stroke.
Conclusion
In conclusion, navigating the path to hemorrhagic stroke recovery requires a comprehensive and personalized approach. By addressing the physical, cognitive, and emotional aspects of rehabilitation, individuals can embark on a journey toward regaining independence and a fulfilling life. This guide stands as a beacon of support for those on the road to recovery, emphasizing the possibilities and triumphs that lie ahead.
The InterviewLuka Jelusic experienced a hemorrhagic stroke at age 46. Recovery has tested him in many ways and the experience has taught him a lot.
Highlights:
02:01 Introduction
03:18 What caused the hemorrhagic stroke
09:43 Hemorrhagic stroke symptoms
15:11 Dealing with mental fatigue
22:23 The neural superhighway in the brain
29:03 Managing family emotions after the stroke
38:23 Hand-brain connection and its impact on recovery
43:48 How handicraft helps with neuroplasticity
48:51 Lessons from the stroke
56:16 Time management
Transcript:
Bill Gasiamis 0:00
Hello, everyone. Thanks once again for tuning in to another episode of the Recovery after Stroke podcast. Before we get started, I want to address something with you, that you may have noticed that is different about the show when you are listening on your favorite podcast app.
Bill Gasiamis 0:16
Because I have not yet been able to secure an appropriate corporate sponsor. To help cover the costs of the show, I have decided to switch on a feature offered by my podcast host, and that is to run advertising on some episodes before during, and after the interview. I do hope that they are not too distracting, and I would love your feedback if they are particularly if they are inappropriate or annoying in any way.
Bill Gasiamis 0:44
I have avoided switching this feature on for as long as possible. But because I have covered the costs for the show since 2017. And with the rising costs of keeping this podcast going, I have no other choice. I will be looking at ways to raise more funds shortly, which might include a version of the show which is a subscription base for those who prefer not to listen to ads, or perhaps a Patreon page.
Bill Gasiamis 1:12
But I will look at many different options and implement the ones that are best for me. And hopefully, they will be the best ones for the listener as well. The book is a perfect way of supporting me and the show while getting amazing value. And you can grab a copy of that by going to recoveryafterstroke.com/book.
Bill Gasiamis 1:33
Funds raised by the book already are helping to pay for some of the costs of the show. But we are a long way from being cashflow positive. The book tells the story of 10 stroke survivors and the steps that they took that got them to the stage in their recovery where from a personal growth perspective, stroke transformed into one of those life experiences that was on reflection, filled with many opportunities for growth and personal transformation.
Introduction – Luka JelusicBill Gasiamis 2:01
Grab your copy today. This is episode 293. And my guest today is on the second year of his path to recovery after a hemorrhagic stroke. Luka Jelusic welcome to the podcast.
Luka Jelusic 2:16
There you go. Thank you.
Bill Gasiamis 2:18
Thanks for being here. Tell me a little bit about what happened to you.
Luka Jelusic 2:23
Sure. So about two years ago, it was two years, just a few days ago, I had a hemorrhagic stroke, which affected me quite a bit. And actually after hearing your episode 267 with Angie Read I thought I might contact you and just share my experience with it because it was something with Angie’s story that I could relate to in the way that she kind of what I understood, tried to just push through and kind of storm through or like forced the way to kind of getting better and that’s often not how things work.
What caused the hemorrhagic stroke of Luka JelusicBill Gasiamis 3:19
You’re an interesting guy. Okay, because you’re a woodworker, and woodwork is all precision and time and care. And you can’t force the project to get it to the end because if you force it, it looks terrible, and nobody’s going to buy it. You were 46 when you had a hemorrhagic stroke, what caused the bleeding?
Luka Jelusic 3:44
Ah, well, there is no clear the doctors suspected AVM but then after angiography they found no AVM so they said well basically it just happened. And I think I had like a reasonably healthy lifestyle when it comes to usual factors like I’m not a smoker I’m not a drinker. I’m not obese, I’m physically active, and so on.
Luka Jelusic 4:15
But I was in a very, very stressful period in my life. And I am not a doctor and the doctor said well stress can kind of contribute to but not cause a stroke. But I do know that I had a very very stressful period in my life three years before the stroke I divorced my wife and it was my older daughter who didn’t take that quite well so I was quite worried about her.
Luka Jelusic 4:50
I had a stressful situation at my job a particularly stressful situation at work that drag for a couple of months also I entered a new relationship, which is now very stable and very supportive and great, but at that time were also several challenges there. So it was kind of this situation where you know, all the important areas, like if at least one of them is kind of good, you have somewhere to turn, you know if your job is a mess, but your relationship works, well then, you know, you kind of have a safe way there, but I felt quite a bit cornered. And at that point, and I’m sure that had a lot to do.
Bill Gasiamis 5:35
How do you respond to stress? Do you go quiet? Do you get loud and obnoxious? How do you deal with it when you’re cornered? How do you respond?
Luka Jelusic 5:48
Ah, I think that I think I would say normally, like, kind of problem-solving is a part of my work. And I can tell you a bit about what I do as well. So thinking normally cope with these things fairly? Well, but at that point, I think I started to feel like, you know, I just did everything wrong. And I’m a complete failure, and I’m just making a mess all around me. And it was some kind of some kind of given up in that, like, I just, it just seemed like everything I did was wrong at that point.
Bill Gasiamis 6:32
And if you’ve done it, if you’ve had a couple of bad decisions, or things have gone wrong, or people are blaming you for things that have gone wrong, that may not even be your fault. You do tend to sort of say, Okay, well, maybe I’m going to stop doing anything, right now I’m going to stop making decisions, I’m going to stop taking action. And it seems like you’re withdrawing, it seems like you’re, you’re not taking responsibility.
Bill Gasiamis 6:58
But in fact, I’m describing myself now. But in fact, what’s happening is, sometimes when everything’s turned to shit, the best thing to do is do nothing, and just wait until the wave passes over you and goes away. And then you can sort of reassess, and then start making decisions again, and start retaking action, and start testing the waters to see how things are going to go.
Bill Gasiamis 7:25
Now, in a difficult situation with people and in their relationships, you have to allow the other person to go through their process as well, their phase of how they deal with the terrible time. And if the two with different ways of dealing with a terrible, terrible time clash, then it can be chaos. And I feel like what you’re describing is that you might have felt like you were you had no control over influencing the situation positively. And losing control was also absolutely making it worse.
Luka Jelusic 8:03
Absolutely. That’s the the way I felt at that moment, like, like, I just couldn’t figure out a way to like, make things better for me or other people around me. So I resonate with the way that you explain these things.
Bill Gasiamis 8:25
And especially what your children, when, when it’s your children, you want to make it better for them all the time, you want to make sure that they’re not hurting, that they’re comfortable that they understand that they can appreciate your point of view that they respect your decisions, or that they can forgive you if you’ve made the wrong decision.
Bill Gasiamis 8:44
And children just don’t play that game. They have their way of dealing with stuff and it might not be correct, because they may not also have the skills to correctly approach something that’s bothering them. But it’s the wrong time to charge both of them as well, isn’t it? I mean, it’s impossible. Yeah,
Luka Jelusic 9:06
absolutely. I mean, it’s at some point, you also when it relates to children, that tendrils do other things as well, like you understand that you do live kind of in the long run, like you’re gonna live from today from today to tomorrow. So there’s a lot of learnings that happening today that are very useful at some later point in life. So often things are not what they seem in the moment, but you have to get there yourself, right? You have to kind of figure it out for yourself in a way.
Hemorrhagic stroke symptomsBill Gasiamis 9:43
And then when all this stuff is happening, it seems like the bleeding in the brain is also a circuit breaker to all this stuff that happened personally. How did you first realize that there was something wrong? Did you get symptoms? What was it like?
Luka Jelusic 10:04
Yeah, yeah, I did. So in the days before the stroke, I was extremely tense. Just like there was some kind of tension that I felt in my body and some kind of spasms, which were not like the usual thing for me. And then it happened actually, when I was in the shower, which I heard is not completely uncommon. If you’re in a long, warm shower, and if you have previously been tense, that can kind of cause a sudden change in your, blood temperature, pressure, and stuff.
Luka Jelusic 10:51
So I just felt that I almost fell in the shower. And I noticed that, like, my right leg doesn’t hold me. And then I tried to grab myself and my right, arms didn’t work. And I thought, Alright, there’s something weird going on. But there was nothing with my vision. And you don’t know much about stroke unless your doctor or your stroke survivor.
Luka Jelusic 11:20
But I thought, Okay, since like I see, on both my eyes, it’s probably not a stroke, it’s maybe something with circulation, whatever. So yeah, my partner took me to a local, small hospital and they said, Well, you probably had a small stroke, it’s probably not too terrible. But you need to go to a bigger hospital and get checked. And then then it came to a bigger hospital.
Luka Jelusic 11:49
And then they started doing tests. And then they said, Yeah, you had a, you had bleeding in your brain. And we’ll kind of keep monitoring you and see what’s next. And then at some point, they said it stopped. So there’s no like, further danger. And they, they they were kind of considering surgery, but they then decided not to do anything. And, and there was that.
Luka Jelusic 12:19
And then what happened was that I think it was like the second day I was in the hospital, I got sick with COVID and that didn’t help. Thanks. Because what I heard from a doctor is that it’s not a very scientific explanation, but I guess it kind of makes sense as COVID hits you where you’re weak.
Luka Jelusic 12:44
And I just had a stroke. So that probably made the fatigue worse than if it was just from the stroke, because that’s the thing that I struggled most with fatigue brain fog again, and confusion.
Bill Gasiamis 13:04
How bad is fatigue how much energy did you have to do things for say, the day?
Luka Jelusic 13:12
Well, I started initially, it was good, quite difficult. And actually, when I started now and then getting a good day, when I would feel kind of normal, almost normal. It was only then that I realized how extremely tired I was all the other time. So it was this kind of high point that made me realize, yeah, that that I am very different in the other times, so I spent three months of work.
Luka Jelusic 13:49
And then and then went back to work. And that was quite difficult. So I work primarily as a teacher at the university, I teach design and craft at two different schools. And what is kind of a big part of my work is so-called design-build projects or community participatory design-build projects.
Luka Jelusic 14:12
So I take a group of students it can be like 15 or 20 students somewhere to some kind of community, it can be like a small rural community or a hospital or something like that. We stay there for a month. And we design and build some kind of space for them. So it can be like an outdoor community garden or like an outdoor living room or something like that.
Luka Jelusic 14:38
And there’s a beautiful project. It’s a very meaningful thing to do. But it’s also extremely intense, very kind of engaged with people with decision-making at many different levels, and so on. So that was the first thing I did after I returned to work. And that was quite quite challenging. I mean, I had help from colleagues as well. But it was quite a push to do that.
Hemorrhagic stroke recovery and mental fatigueBill Gasiamis 15:12
Were you struggling with was it being getting clear information in knowing what to do? Was it in telling people? What steps to take? What are you struggling with the most?
Luka Jelusic 15:25
I think the most difficult thing is that intense social contracts are one of the things that wear me out the most. So, if I have like, whatever manual workshop task to do on my own, that’s great. That’s I don’t have a problem with that. But intense social contact and intense settings with many people, airports, train stations, and something like that.
Luka Jelusic 15:54
It’s like, it just sucks out the energy off me immediately, and computer work is kind of similar. But since the essence of these projects is kind of matching people and work desks and stuff, then just struggled with fatigue a lot in that.
Intro 16:17
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. How long will it take to recover? Will I recover? What things should I avoid? In case I make matters worse, doctors will explain things. But, if you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 16:42
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called Seven Questions to Ask Your Doctor about your Stroke.
Intro 17:01
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery, head to the website. Now, recoveryafterstroke.com. Download the guide. It’s free.
Bill Gasiamis 17:21
Yeah, very common. It’s exactly what I suffered from other large crowds. So going to sports events was very difficult for me going to a noisy event where there were a lot of people at a bar, for example, and then the lighting and then the noise and then was just impossible. And then also finding a way to go back to work. I did some work in an office for about three years to try and get back on my feet.
Bill Gasiamis 17:58
I remember the first six months were terrible, I had to get anything done. And I was constantly fatigued. I would even leave and go into the car and have 10 minutes of quiet time or meditations or more to try and sleep just so I could recharge and come back and do the rest of the day. It was extremely difficult. And I drove an hour to work and an hour home. It was just such a massive day I was wiped out.
Bill Gasiamis 18:25
But what I found over the three years by the time it got to the last few months before I left the place, I was able to sit in front of a computer for eight hours and do some work, and participate in those conversations. I didn’t need to take rest breaks, even though I would be quite fatigued and exhausted at the end of it, but didn’t need to do what I was doing at the beginning of the job.
Bill Gasiamis 18:51
So it improves. But yeah, it does take some time. The hardest part for me was other people around me not appreciating what I was going through how did you find dealing with other people who you’re working with? And how did they react and respond to you?
Luka Jelusic 19:12
Well, I have a very supportive partner, which helps me a lot in this especially since like, I don’t know if you struggle with that, but it’s gonna it was it took me quite a while to learn who I am right now and what are the things that wear me out and then what are the things that are that I should avoid and so on.
Luka Jelusic 19:39
But at work initially, I also felt just like you described like I didn’t look it’s just hard for people to understand. Like you kind of just expect automatically for someone to understand what stroke is about and all that. I mean that I guess that’s why you’re doing what you’re doing.
Bill Gasiamis 19:59
We don’t want them to ever really understand, we don’t want them to know.
Luka Jelusic 20:07
Like, for real yeah, exactly. So I think that was the case initially at my workplace. Like, it wasn’t like, it didn’t come with a lot of, oh, maybe support or understanding. But I think it is way better right now. And I had just one month ago, a kind of a milestone, or like a breakthrough moment after a visit to a specialist doctor who had a lot of experience with strokes, and all sorts of neurological stuff.
Luka Jelusic 20:49
So after I like, kind of just tried to push through and kind of work my way through the recovery and all that, and that didn’t really, it just like it just started getting worse, also, so the, like, the memory issues, and fatigue, and all these things that get it, I had a feeling doesn’t prove, but it’s on the contrary, is getting worse.
Luka Jelusic 21:15
So then in October, I had to take like a 50% sick leave. Which helped me a lot, because I could balance work and rest way better. But it was a month ago that I had talked with specialists who for the first time explained, like the specific nature of the stroke that I had. Because I think one big issue for my recovery was that I kept hearing from doctors like, Oh, you have like a small bleeding so like, it’s not a big deal.
Luka Jelusic 21:54
And fair enough, but I just didn’t understand like, why am I so tired? And why do I struggle so much, and I kind of kept beating myself up, like, I should be better and you know, come on, just get your ass out of bed and go out and do your things and all that. And, then for some time, you can sort of take it like, alright, it takes some time to recover and all that but at some point, and it just, you understand you’re hitting your head against the wall.
The neural superhighway in the brainLuka Jelusic 22:23
And it was this doctor who said you had a small bleeding that’s correct. But you had at a very particular point in your brain. That’s a part which is called an internal capsule, which he called the neural superhighway. So it’s a kind of spot where old nerves from your body and the spinal cord pass through to the process in parts of the brain, and the other way around.
Luka Jelusic 22:51
So he said, If you had a real job in a factory, you wouldn’t have like, you wouldn’t feel a big difference from your life before. But we did executive function, like the planning tasks and the multi, multi-level decision making and all those things that are affected a lot. And that’s why you have the consequences that you have. So even a small injury, to that part of the brain can have very serious consequences.
Luka Jelusic 23:25
And he said I had a patient that had a stroke at the same spot as you years ago, but a bigger bleeding. And he said things were not funny at all. Honestly, he said you can consider yourself extremely lucky. So that was kind of like a big, like, aha moment for me because it is like almost like Okay, so like what’s happening? Like, it is kind of real, you know? So I think that explanation for the doctor, and then the same doctor called my boss at the university and explained to him what was going on.
Luka Jelusic 24:07
So from that moment on, I also had quite a different, understanding at my workplace of what was going on what a task I could do easily, and what tasks I should avoid. At least in the immediate future. So it was quite an important thing for me in terms of accepting what happened.
Luka Jelusic 24:33
You know, you read a lot about that, like the first step of recovery is actually to truly accept what happened. And I think for me, that was that moment and that kind of explanation from that doctor. Like against the thing that I’ve been hearing before, like, oh, we only had small bleeding so should be alright.
Bill Gasiamis 24:56
Yeah, it’s place. They tried to keep you calm and not too concerned about it, etc. But they kind of playing it down. As far as I’m concerned, you hear about people having an ischemic, transient ischemic attack a TIA, and they call it a mini-stroke. And I think it’s the worst way to describe it like it’s a stroke doesn’t matter if it’s Mini minor or major, it’s a problem in your brain, and you have to take it seriously.
Bill Gasiamis 25:23
And I think it makes people not take the situation seriously, sometimes. I love the fact that you got this doctor to tell you specifically what impacted what part of the brain was impacted. That’s why I have my FREE download of the seven questions to ask your doctor about your stroke, people go to the recovery after stroke.com. Download it for free.
Bill Gasiamis 25:49
And then what they get is they get questions that they can go, a form that they can take to their doctor, and it has questions. And one of the questions is, Where specifically in my head is the damage? And what does that part of my brain do? And what hopefully that does is create a conversation that’s very different from you had a stroke, you should go home and you should rest.
Bill Gasiamis 26:14
It’s specific and the caregivers and the family members who are there, then specifically know what you’re struggling with and why you’re struggling with it rather than guessing. When I went to the hospital, I was told I had a bleed in the brain, it was near the cerebellum. But that didn’t tell me what that impact was and what I should expect to be struggling with.
Bill Gasiamis 26:40
So everything that was happening, my wife and I were looking at each other going, is this normal? Is this what I’m supposed to be feeling? Am I having another bleed, we had no idea. And it made it uncertain. So we kept going back to the doctor, every time I’ve been to the hospital, every time something weird happened, or if I felt strange, who would strain in the hospital?
Bill Gasiamis 27:01
Because nobody explained anything to us. Most of the time we went to the hospital was a false alarm. But another two times the AVM bled again and wrote that up having brain surgery.
Bill Gasiamis 27:15
So what I would suggest is for people to get as much information as they can, if they’re not certain what’s happening to them after the initial incident, and if something feels weird, definitely go and get a second opinion and go to the doctor. Don’t wonder don’t don’t guess. But don’t play it down. It’s a serious issue with TIA. A small bleed in the brain is a bleed in the brain.
Luka Jelusic 27:40
Yeah, I think that’s extremely important. Because it can it can be like the symptoms can be so different depending on where it happens. Knowing what are the kind of typical things for the spot where it happens, can be so helpful for the recovery. One thing that I read, because that later was that the doctor explained to me that I didn’t know when reading about it with that specific term, the internal capsule stroke, and like, it fits.
Luka Jelusic 28:15
Like silly little things like decision making is one thing that I noticed I have a very hard time making decisions. It can be like stupid decisions, but it’s like I just kind of make up my mind. And I feel like an idiot like wait a minute, it’s like, whatever situation starts a big deal. Just make up your mind, but I can’t. And that’s one of the symptoms of a stroke in that area. It’s quite helpful to just know that.
Bill Gasiamis 28:46
In that moment when you can make decisions, even simple ones, do you recruit other people to help you make the decision?
Luka Jelusic 28:53
Yeah if I can. I tried to ask for help if I could, depending on what is the situation.
Managing family emotions after the strokeBill Gasiamis 29:04
So you’re going through a difficult family time with your former partner and your daughter and you had the bleed, how did that impact them?
Luka Jelusic 29:16
Well on the one hand and again, I’m not sure if that’s the right thing to do but I think I really kind of desperately want to stay functioning kind of normally like to continue providing whatever not only financially ways but as well but also in all the other ways. It’s just like to kind of continue with the normal life as much as possible.
Luka Jelusic 29:55
And I think for the large part I managed but at quite a big cost in terms of fatigue, and also, in terms of like the cost of my private life, because if you’re not the end of the week comes and you’re completely, you know, you’re a cucumber on a couch, so much of life, right. So I think that I guess that answers kind of the question because like, ultimately that does slow. Getting better in the long term, like pushing through and trying to do more than you can.
Bill Gasiamis 30:38
So are you trying to just pretend that you were, as you were before the stroke? Was that to try and make your daughter feel okay about the situation that was happening to you, because I kind of, was managing people’s emotions a lot? So I found that leading up to surgery. I was cool as a cucumber, I pretended as well, even when I was worried that I wasn’t worried about the surgery, because I knew everyone else around me was shitting themselves.
Bill Gasiamis 31:15
They were fearful about what was about to come. And to try and keep them calm. I pretended in certain situations that I was calmer than I was. Even though it was good for the surgery. I was trying to always keep other people relaxed, and calm. I was playing it down. Did you find yourself doing it? To sort of try? Definitely.
Luka Jelusic 31:39
Not with my not with my not with my partner? I think but with her, I was gonna, yeah. Not acting in or not playing. Like, I’m better than than I am. But in many other situations. And also, like, I know that in, in social situations in work. And all like, once I started getting tired, then most of the energy was spent on trying to look normal. And that says something stupid or not, you know, which which is, which is, which doesn’t make sense at all, I should just kind of bailout and take a rest or whatever, leave.
Bill Gasiamis 32:26
It’s so weird. But it’s cool and I hear it a lot. People just want to just go back to the status quo, and then they can’t, and then the gig is up, and they have to fall in a heap and hit rock bottom. And then they realize that they need to make some dramatic changes. And then people go, Oh, my gosh, I didn’t realize you were that unwell.
Luka Jelusic 32:52
Yeah. But there’s something with, I heard you say that in one of the interviews, like, ultimately, you don’t want to do things that got you in trouble in the first place. But I guess that’s what a lot of us just do until we come to a certain point, which then I guess marks a turning point in recovery as well.
Luka Jelusic 33:16
And that’s a point of acceptance of what happened and acceptance that you have to change things. And did you have to just go with what your body’s telling you and all that? But until that point, I mean, I hear in light, like a lot of stories that your podcast and other things that I read that people just tried to kind of, yeah, just get back to the former self as soon as possible.
Bill Gasiamis 33:41
It’s the worst one to go to because that’s the one that caused the problems. It’s the person who ended the situation. Like you. I was contributing to the bleeding occurring, by smoking, drinking, and working too much. Not resting enough not having any me time. I was angry. You know, I was blaming everybody for my problems. There was so much negativity in so many issues that I was creating that I was creating the perfect storm.
Bill Gasiamis 34:20
And this thing in my head just happened to be there. And I made the conditions perfect for it to go I’ve had enough and I’m gonna pop. And it was kind of like it’s like a circuit breaker. It’s what I mentioned earlier to you like for me, it was a circuit breaker. It was something that I look on now and think if it wasn’t for that I may have succumbed to a different condition than what I had a heart attack.
Bill Gasiamis 34:48
Who knows you know, the smoking and the drinking water have contributed to something positive. So I see it as like this weird blessing in disguise Yeah, it was hard, though. I’m not saying it’s easy. And I’m not promoting stroke it was button on. I’m now 12 years beyond the first bleed. And I look back at it and it wasn’t for that maybe I would have suffered something more serious.
Luka Jelusic 35:19
Yeah, I understand. And I’m definitely, especially lately trying to see the good side of it, like the way that it’s forcing me to change my life. There’s there’s a lot of good things about it. Now. And there’s also, you know, I don’t know if you saw it. There’s a short documentary about Ram Dass, on Netflix, who had a stroke he’s some kind of spiritual leader. So he had a stroke late in his life. And he says, this thing, which is a great sentence like, I don’t wish you stroke. But I wish you the grace that stroke brings, which was quite profound.
Bill Gasiamis 36:08
The best lessons I’ve ever had to learn were profound, I can’t, I couldn’t have learned them any other way. And it’s it’s disappointing that I had to have a stroke to learn them. But I’m not sure if there was a way for me to learn them. I’m not sure how else I could have learned the lessons that they brought that abroad. It’s really weird. So were you left with any deficits, other than the neurological challenges, were you left with physical deficits in your body?
Luka Jelusic 36:41
My right side is not as strong as it used to be. So I have good dexterity in my right hand. But there’s a difference. So especially when I’m when I’m tired, then it’s kind of kind of clumsy with it. But, but nothing else. Nothing apart from that. And also, I think, I think there’s a number when it comes to like, again, it’s something that ng read mentioned in your podcasts, like working with your hands is something quite important for the recovery.
Luka Jelusic 37:30
I am teaching designed to craft with my students. So there’s like this premise of the school, both schools that I work with is that design is not complete without the act of making. So wherever you design, you need to make it to understand the implications of it. So I’m both teaching design and design skills, as well as different making skills.
Luka Jelusic 37:56
But I noticed that that’s something like since I could do less off kind of executive functioning than I started to turn both in the way I teach, but also in my hobbies and stuff, kind of coming back to the workshop and going back to making in different ways. But it’s extremely beneficial for me.
Bill Gasiamis 38:23
I love that.
Hand-brain connection and its impact on hemorrhagic stroke recovery
Luka Jelusic 38:23
When I was younger, I was fiddling a lot with old cars. And then a little less than a year ago, I bought after quite a while I like I bought an old car, and 1968 car that needed a lot of work and fiddling with that thing for an hour or two per day. It does me good. Both in terms of kind of the like just the physical training of dexterity. There’s something else that happens with that kind of work.
Luka Jelusic 39:04
And there’s an excellent book, I don’t know if you know about it, it’s called The Hand by Frank R. Wilson. It’s called the full title is like the hand and how its US shapes the brain and something else in human culture. So something like that. But in any case, Frank Wilson is a neurologist to kind of brought forth this hypothesis, that brain and hand evolved together.
Luka Jelusic 39:39
It was the evolution of our hand that affected the change in the developmental forebrain that ultimately enabled the appearance of language. So kind of the basic premise is that the hand and brain are like, intrinsically connected in very beautiful and sometimes unexpected ways. So there’s something in that, like dealing with music, with crafts with these kinds of things I find extremely beneficial for my recovery. And I heard that from other people as well.
Bill Gasiamis 40:16
Yeah, well, I’m from a Greek background. So most of our talking is done with our hands. If you’re not moving your hands everywhere, you’re not communicating, you know what I mean? And I struggle to be on the podcast and not use my hands. So I have to put them down. And because it’s not efficient, the podcast.
Bill Gasiamis 40:41
But when you think about what you said, like when I think about it, instinctively. You, there’s so much not in them so much that comes from the communication with hands like there is our gestures. Like, often, when somebody’s talking emotionally about emotional stuff, they’re pointing at their heart, you know, when they’re freaking out in their head, their hands are near their head, you know.
Bill Gasiamis 41:09
And when something has, when you’re gutted by something when something has happened, and you feel gutted. And you know, you’re struggling with what just happened, you know, people are clutching their stomachs with their hands, it has their hands have a very significant role in nonverbal communication, you do see people’s hands do all sorts of strange things.
Bill Gasiamis 41:34
And if you don’t listen to people, if you’re not listening to their words, and you’re just observing their hands, it’s amazing where their hands go and what they do. And if you think about what you said earlier about design, right, so there’s one thing to do design an object and create a 3D render. And to be able to visualize it at the top, and the bottom is a certain amount of skills, a certain part of your brain gets activated.
Bill Gasiamis 42:04
And you’re able to visualize that before you render, then you render it, then you see it, your visualizations come to life, but then to use your hands and to craft, the raw object, the raw piece of timber, and to fine-tune it and make it look, the way you intended is another next level of ability and skills and the hand has to play a role in every stage it has to play a role in the rendering has to play a role in the construction, it has to play a role in developing the form of the objects.
Bill Gasiamis 42:44
And you can see how if somebody only ever did design, it’s like what they say about architects and builders, you know, architects they’re fantastic. All they do is put drawings on paper, but they’ve never built a house, what would they know about installing a window, for example, it’s kind of true, it’s that you miss a big piece of the process if you’re only involved in one step of the process.
Bill Gasiamis 43:14
And then the other step is done by somebody else. I think that designers and architects would be far better at their skill at their craft if they took a project from concept to result. Because then they’re able to understand where in the design, they need to alter to make the construction easier, for example, and vice versa.
How handicraft helps with neuroplasticityBill Gasiamis 43:48
So I feel like your job of say designing a space or putting something together and then being involved in the project is helping your recovery because Neuroplasticity has to happen in far more places in your brain than in somebody who just did the design work and then handed that project over.
Bill Gasiamis 44:11
I was telling a friend of mine whose daughter recently had a bleed in the brain. She had an AVM when she was 17. At the time, she was doing well now. But she was a diver. So she’s somebody who goes onto a board jumps up and then different heights, twists her body in the air, repositions at real lines, and then finds a way to land in the water to make the smallest splash possible.
Bill Gasiamis 44:43
When I was being told about the rapid pace of her recovery, I wasn’t surprised to hear that because she has far more neurons in her brain that are related to movement and how to achieve I have an outcome with her body than I do, for example, She’s 17, she’s got that advantage as well.
Bill Gasiamis 45:07
But she also has this additional skill. And even though she’s left with left-side deficits, numbness tingling, and proprioception issues, she still has all these other additional neurons that she can use to rewire the parts of her brain that were impacted. And to give her more ways to bring back things that will last, because there are just more pathways there already. Unlike me, I never dived in my life.
Bill Gasiamis 45:44
So I’m kind of sitting behind the eight ball. And this is the thing about exercise as well, where what you do with your hands on the car, I consider a form of exercise. It’s coordinating the brain, the hands, thinking, problem-solving, and decision-making, it’s doing it all, all at the same time.
Bill Gasiamis 46:03
It’s such, it’s like a sport, it’s like running around on a field and being physically fit. And then that’s why it’s so important to get into physical activity after a stroke. And it doesn’t matter what level of deficits you have, what you’re doing is you’re creating so much Neuroplasticity, so much potential for change and rewiring.
Luka Jelusic 46:27
Definitely and at the same time, it can be on a level that is manageable and not kind of overwhelming. But like I guess, for the right kind of brain injury and for the right kind of person that can be like really life-saving for the recovery.
Bill Gasiamis 46:48
Yeah, and I encourage it, and I love what this book suggests that the hand and what did you say the which part?
Luka Jelusic 47:03
So I read quite a while ago, I mean, I read because of my work and not because of a stroke. But he hypothesizes that it was the evolution of the actual thumb, not the hand is a hole, but the way that our thumb evolved, compared to other primates caused our brain to rewire, which ultimately enabled the appearance of language and other things, which makes us different than other primates. So you can kind of like twist that idea. And like possibly use your hands as a way to reclaim parts of your brain.
Bill Gasiamis 47:49
I’m reading the title on Amazon, I just found that on Amazon, and the title is The Hand: How Its Use Shapes The Brain, Language, and Human Culture. So how many years has it been now since the first bleed since bleed?
Bill Gasiamis 47:51
Two years.
Bill Gasiamis 47:54
And has the blood clot gone away from the blood that was in your head?
Luka Jelusic 48:20
I guess? Yeah, I had the angiography, like two months after the stroke, as I mentioned before, where they tried to see if there was AVM that caused it or something. And they said, Yeah, it’s like, it’s all good with that, there’s nothing more that we could do. So you should just kind of proceed with your whatever physiotherapy and stuff and like go on with your life.
Lessons from the hemorrhagic stroke recoveryBill Gasiamis 48:51
Yeah, that’s a good place to get to. What has stroke taught you?
Luka Jelusic 49:04
I think definitely listening to my body or listening to my body or listening to myself, whichever way you want to put it in ways that I didn’t know how to do before and I’m still learning that big time. I remember when I was working with the physiotherapist I had quite an unusual and interesting person as a physiotherapist.
Luka Jelusic 49:31
So he told me, he gave me some exercises to do like in the gym, like walking in a straight line and whatever with support without support, one eye closed and stuff, but he told me you need to do things that are okay for you. That’s, that’s extremely important for you.
Luka Jelusic 49:54
Now you need to do what you’re comfortable with. As Alright, and then we’re doing this exercise and He tells me something, to do something where I almost fell. And he said, why did you do that? I said, you told me to say yeah, but I also told you that you need to do things that are good for you.
Luka Jelusic 50:18
And I remember that so many times, like, it doesn’t matter if he told me to, do something on the line. If that does work with me, it was such a simple, simple kind of trick to prove like you moron, like you just did something that’s not okay for you.
Luka Jelusic 50:36
And like you forgot it. So think that’s a big lesson to say stop and think, Is this okay for me? Now or not, and like you said, yourself, like, it’s kind of sad that it’s a stroke that has to teach you these things. But I guess there was no other way for that.
Bill Gasiamis 51:05
to happen, no other way. Very comfortable describing myself as a thickhead, I have to learn the hard way. And there’s no other way you can bring me to something gently and calmly and, and simply and it just doesn’t work. My brain doesn’t work like that. I have to get whacked over the head, so to speak. What was the hardest thing about a stroke for you?
Luka Jelusic 51:30
I think accepting the the new reality and accepting that life is not, you know, the life life and career and stuff. It’s not like a straight line or a straight path. And some things just happen in a way that you didn’t plan. Big time. Because, like about a year and a half, like roughly half a year ago, I was getting quite grim. Because the recovery just wasn’t going the way I kind of taught it.
Luka Jelusic 52:10
So it’s getting quite dark. In death and kind of, you know, just having these thoughts, alright, maybe I just won’t be able to do what I kind of really like to do professionally and in other ways. And you know, all these thoughts like, who’s gonna? Will I just stay alone will way have a job and I have a source of income? Will I have support from people? will it just be crippled that is not able to take care of himself and all these things? That can get quite tough.
Bill Gasiamis 52:51
Reasonable questions as well in the face of what has happened to you. They’re very reasonable questions, and your identities getting challenged, and your future is uncertain. And yeah, I mean, I think everybody who’s been in your situation has asked themselves the same questions.
Bill Gasiamis 53:09
And I found myself waking up in the middle of the night and going to dark places, you know, when everything’s quiet, and I’ve just gone to the toilet, and I need to go back to bed and I’m walking back to bed and then my brain just starts going everything shit, everything’s terrible. You’re never going to get through.
Luka Jelusic 53:31
The night is the worst man.
Bill Gasiamis 53:35
And I spoke to my psychologist about it and she told me there’s a specific time in the middle of the night it’s roughly between one and three in the morning or four in the morning. If you were in the middle of the night. It’s called the witching hour. The witching hour now I’ve heard of it before and I was like and what happens during the witching hours you guys dumbshit stuff that shouldn’t be thinking you start thinking and then you can cause a loop in a cycle it’s very common of the negativity.
Bill Gasiamis 54:08
And if you know about it, just tell yourself you’re woken up during the witching hour and you’re just playing the unnecessary loop in your head and you can just forget about it and go back to bed and then wake up in the morning and you’ll see things are different and that’s what I try to, I try and do that because my head never used to do that. That’s exactly
Luka Jelusic 54:35
That’s exactly what you described that hour and the certain kinds of thoughts that don’t normally appear during the daytime do appear that time and then they kind of mess up with you. But what I did find out is that that is extremely helpful, and I heard you talk about similar things. Are there good routines and good rhythms of things, and practices like meditation and journaling?
Luka Jelusic 55:10
And for me like, like, it’s extremely helpful for me to make a plan for every day, and then try to stick to it. And then if it works, it’s good. And then if I blow it, I kind of blow it, but it’s really good if I can stick to it, for example, not work more than two hours, in one go to work two hours, have a little break, then work more.
Luka Jelusic 55:40
And yeah, like doing a meditation every morning, journaling every morning, no screens in the evening, which was kind of difficult to stick to. But if I manage that, that helps me a lot. So kind of trying to develop good discipline around things that I know are helpful. That then also helps with having good sleep and not going to those dark places at night.
Time managementBill Gasiamis 56:15
Yeah, I used to just be happy that I had enough energy to cook dinner for the family. When I was home alone. My wife was back at work and the children were at school, I would do nothing all day, just so that I had enough energy to go by the ingredients and cook dinner and make sure that we ate dinner together. That was it. And if I did that, I achieved my goals for the day, and I was happy.
Bill Gasiamis 56:48
And then as things started to improve, I found myself getting through some heavier days of work. So getting to the point where you know, that list, I made it a bit larger. And then by the time I got to three o’clock, I’d be wasted. And then there would be say, four or five or six things that are still on the to-do list. And I just knew they were not getting done.
Bill Gasiamis 57:15
That’s it under no circumstances, is it possible for me to sit down and do that, because if I do those things, I’m going to suffer for it tomorrow, or I’m going to not rest before bed, and I’m not going to get a good night’s sleep, and it’s going to be terrible. So I got good at feeling comfortable with saying, tomorrow’s another day, the list is still going to be there. I’ll just do it tomorrow. Instead of trying to get to the bottom of the never-ending list.
Bill Gasiamis 57:44
I mean, the list of tasks never ends. And it’s like, Alright, that’s it. We’re done. We’re done for today. And if somebody contacted me and said, for work, especially. And so what about this? What about they’ll be like, Yeah, can’t do it right now it has to happen. You have to wait.
Luka Jelusic 58:02
Exactly. But I think that was quite I assumed I was also quite learning for you at some point. But I know it was difficult for me because you know, at some point, you can have a feeling that you move through life because you don’t leave things for another day.
Luka Jelusic 58:19
But you do them, you do as much as you can you make good use of your time, and you do as much as you can in one day and not leave things for tomorrow. Because at some point, you just assume you have more or less unlimited sources of energy, especially when you’re young and all that. But then, after a stroke, it’s just a different distribution of resources.
Bill Gasiamis 58:47
And it depends on what the most important thing to you. So you can still allocate time to the most important things to help you move through time and achieve your outcomes. And it’s good at teaching you that that’s not that important. You don’t need to do that right now. And you can let that go.
Bill Gasiamis 59:05
And you could constructively use that time by doing nothing. For me, it was very constructive to do nothing, because that meant I rested, recharged my batteries felt better, and was able to interact with my family. That was all positive things. So doing nothing became very constructive. Very. You came a task that was useful to do, which I didn’t realize.
Luka Jelusic 59:37
Yeah, exactly. Yeah. This is a different kind of prioritization.
Bill Gasiamis 59:44
Less is more and that’s a good lesson to learn less is more especially when you have to use the energy in your battery efficiently and gently because you only get so many lines of battery for the day. Once they’re done, they’re done. That’s it. The next day is another day we’ll, we’ll reassess and go again. What would you like to tell other stroke survivors who are listening to this quite early on in their recovery, perhaps, or they’ve been going through for a little while? What’s your one piece of advice or encouragement that you’d like to give?
Luka Jelusic 1:00:29
Well, funnily enough, I heard that early on, and somehow, like, it just doesn’t get to you until it gets to you. But since my mom is a doctor, and she worked with some stroke patients in her practice, she said, you mustn’t get fixated on becoming who you were, before the stroke as soon as possible, but to understand that you can also be someone else and that’s okay.
Luka Jelusic 1:01:00
And I kind of understand that now. And although I heard it, I was told that right after the stroke, but it’s just a different thing, if you, you know, have kind of intellectual understanding of something or like if you understand something in your body and kind of in your bones. But I think that’s the most important thing. Like you don’t necessarily have to get back to who you were before. You were someone different. And that can be a beautiful thing.
Bill Gasiamis 1:01:33
Your essence is the same. But how you go about participating in the world or responding to how the world is, can evolve is an evolution? How would you describe it?
Luka Jelusic 1:01:40
Yeah, I’d say so. And you know, how the spiritual teachings tell you that letting go of things, or accepting what is is super important to move through life. I would say that. Once you take that in, that’s when a stroke can become the best thing that ever happened to you, like you say.
Bill Gasiamis 1:02:34
On that note, thank you so much for joining me on the podcast.
Luka Jelusic 1:02:38
Welcome, Bill. Thanks a lot for what you’re doing. I so immensely appreciate it. It extremely helped. It was extremely helpful to me on this journey to listen to many episodes of your podcast. I appreciate it immensely.
Bill Gasiamis 1:02:54
Thanks for joining us on today’s episode, get a copy of my book about stroke recovery from Amazon, or go to recoveryafterstroke.com/book. To learn more about my guests, including links to their social media, and to download a transcript of the entire interview, go to recoveryafterstroke.com/episodes.
Bill Gasiamis 1:03:15
Thank you to all those who have already left the review. It means the world to me, that podcasts live and thrive because of reviews. And when you leave a review, you’re helping others in need of this type of content to find it easier, and that is making their stroke recovery just that little bit better. If you haven’t left a review and would like to the best way to do it is to go to iTunes or Spotify.
Bill Gasiamis 1:03:39
Leave a five-star review and a few words about what the show means to you. If you’re watching on YouTube, you already know that I love responding to comments on the YouTube interview. I appreciate it. If you like the episode and to get notifications of future episodes, subscribe to the show on the platform of your choice. If you are a stroke survivor with a story to share, come and join me on the show The interviews are not scripted, you do not have to plan for them.
Bill Gasiamis 1:04:09
All you need to do to qualify as a stroke survivor. If you have a commercial product that you would like to promote that is related to stroke survivors’ recovery there is also a path for you to join me on a sponsored episode of the show go to recoveryafterstroke.com/contact Fill out the form explaining briefly which category you belong to. And I’ll respond with more details on how we can connect by Zoom. Thanks again for being here listening, interacting, understanding appreciating I appreciate you see you on the next episode.
Intro 1:04:46
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals’ opinions and treatments. Protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed all content on this website at any linked blog, podcast, or video material controlled by this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis.
Intro 1:05:16
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Intro 1:05:40
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Intro 1:06:05
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The post 2 Years Of Hemorrhagic Stroke Recovery – Luka Jelusic appeared first on Recovery After Stroke.
Unlocking Recovery: Physical Therapy After Stroke for Optimal HealingIntroductionEmbark on a transformative journey towards recovery with our in-depth guide on “Physical Therapy After Stroke.” Discover how targeted physical therapy interventions can significantly enhance the healing process, promoting strength, coordination, and mobility after a stroke.
The Role of Physical Therapy in Post-Stroke RecoveryImportance of Early Physical InterventionUnlock the potential for optimal recovery by prioritizing early physical therapy. Studies consistently show that swift initiation of physical interventions after a stroke correlates with improved outcomes, emphasizing the critical role of timely rehabilitation.
Customized Physical Rehabilitation PlansExperience a tailored approach to physical recovery. Our team of seasoned professionals conducts detailed assessments, pinpointing specific areas of impairment. From motor skills to mobility, our personalized plans address individual needs, ensuring a focused and effective recovery journey.
Comprehensive Physical Rehabilitation StrategiesTargeted Exercises for RebuildingDive into our comprehensive physical therapy strategies, incorporating evidence-based exercises that rebuild strength and coordination. From range-of-motion exercises to resistance training, our approach aims to restore functionality, empowering stroke survivors to regain control.
Advanced Equipment for Accelerated HealingExplore the integration of cutting-edge equipment in our physical therapy programs. From adaptive devices to specialized rehabilitation tools, our commitment to utilizing the latest advancements ensures an accelerated healing process, setting the stage for a quicker return to daily activities.
The Impact of Physical Therapy on Overall Well-beingRestoring Independence Through MobilityWitness the transformative impact of physical therapy on mobility. By targeting specific motor skills, our rehabilitation programs facilitate a return to independence, allowing stroke survivors to navigate daily life with increased confidence and autonomy.
Building Confidence Through StrengthExperience the confidence-boosting effects of rebuilding strength. Our physical therapy interventions not only focus on physical recovery but also contribute to the psychological well-being of stroke survivors, fostering a positive mindset for the journey ahead.
ConclusionIn conclusion, our guide on “Physical Therapy After Stroke” is your key to unlocking a comprehensive and effective recovery journey. By emphasizing the importance of early intervention, personalized plans, and cutting-edge strategies, we empower stroke survivors to reclaim their physical well-being and stride confidently toward a healthier future. Dive into our expert approach, and let the transformative power of physical therapy pave the way to optimal healing.
The InterviewAfter a stroke, many elderly stroke survivors do not get enough physical therapy, this interview proves that more physical therapy improves recovery.
Highlights:
00:45 Introduction
03:30 Thalmic hemorrhagic stroke caused by high blood pressure
09:29 Memory issues
15:20 Biomechanics and physical therapy after stroke
19:18 Ageism in healthcare with a 70-year-old patient
28:02 The right amount of exercise
40:14 Ann and Molly’s reunion after 23 years
47:01 The importance of having the right coach
54:54 Knowing when to defy the odds
Transcript:
Bill Gasiamis 0:00
Hello, everyone, and thank you for tuning in again to another episode of the Recovery after Stroke podcast. My new book about stroke recovery is called The Unexpected Way That a Stroke Became the Best Thing That Happened 10 Tools for Recovery and Personal Transformation, and is now available to purchase on Amazon.
Bill Gasiamis 0:20
The book tells the story of 10 stroke survivors and the steps they took that got them to the stage in their recovery, where from a personal growth perspective, stroke transformed into one of the moments that could be reflected on as being filled with many opportunities for growth and personal transformation, and eventually led them to be able to say that stroke was the best thing that happened to them.
Introduction – Ann Sertel and Molly HopkinsBill Gasiamis 0:45
To learn more about my book, you can go to recoveryafterstroke.com/book. This is episode 292. And in a slight change of format, and to bring home the need for additional physical therapy beyond what is prescribed by doctors after a stroke when patients leave the hospital.
Bill Gasiamis 1:05
I am joined by Answer Tell a stroke survivor who was 70 in 2020, when she experienced a hemorrhagic stroke, and her physical therapist, Molly Hopkins, who has been working closely with and helping her improve her deficits, despite what doctors were telling Anne when she was being charged from the hospital, and that she shouldn’t expect much recovery after discharge. And SoTell. And Molly Hopkins, welcome to the podcast.
Ann Sertel 1:38
Thank you.
Molly Hopkins 1:39
Thanks.
Bill Gasiamis 1:41
So this is a little bit of a different version of the podcast. And the reason is that the two of you are intimately connected, not only in recovery, but also in a former part of life, and you came together and it was meant to be. And I’ll leave it at that for now. But first, if I could ask you, Ann can you tell us a little bit about what happened to you?
Ann Sertel 2:14
I don’t remember what happened to me. So I have to tell you what my husband has told me happened to me.
Bill Gasiamis 2:21
Is he a reliable source?
Ann Sertel 2:23
Oh, he’s very reliable. Yes. So on July 6, 2020. Nick had, no I had gotten up is that right Nick? Nick got up and then I got up. But Nick didn’t hear me moving around in the house. So he started looking for me. And he found me in our guest bathroom on the floor, wedged in between the toilet and the bathtub. And he tried to get me up, and he couldn’t get me up. And I was just babbling.
Bill Gasiamis 3:05
That’s not the first time I’ve heard of somebody experiencing a stroke and then being lodged between the toilet and a wall or between the toilet and the bathtub. That’s not uncommon. And do you have any recollection as to anything that led up to that? Do you recall being in the toilet or getting to the toilet or anything like that?
Thalmic hemorrhagic stroke caused by high blood pressureAnn Sertel 3:30
No, I don’t remember getting out of bed or anything.
Bill Gasiamis 3:37
And what kind of stroke did you have?
Ann Sertel 3:40
I hope I say this right, Thalmic hemorrhagic is that right? Molly?
Molly Hopkins 3:48
It’s a Thalmic hemorrhagic stroke.
Bill Gasiamis 3:53
Okay, so you’ve had a bleed into the brain? And was there an underlying cause? Do you know did anybody got to tell you what the underlying cause was? Why did the blood vessel burst?
Ann Sertel 4:06
High blood pressure.
Bill Gasiamis 4:09
High blood pressure that you were aware of or unaware of?
Ann Sertel 4:14
I knew it was high, but not that high. I knew it was Elevate, I guess elevated is a better word.
Bill Gasiamis 4:21
Right. And were you taking medication at the time?
Ann Sertel 4:24
I was not.
Bill Gasiamis 4:25
Is that because you’re being naughty, or it’s because it wasn’t prescribed?
Ann Sertel 4:30
Wasn’t prescribed.
Bill Gasiamis 4:33
So it was kind of something that you’re aware of, you’re being monitored, but it wasn’t something that anyone thought was serious at that stage. Is that right? Correct. Okay. And after you have found what’s how does the story go? What ended up happening? How did you end up in hospital?
Ann Sertel 4:56
Well, Nick found me and then he called 911 and they came to our home and took me to Akron, Akron City Hospital. And we live in an area that has a lot of medical facilities. And I said to the driver, why don’t you just take me to one of these places? And he said, Oh, no, ma’am, you need level one trauma, you are in bad shape.
Ann Sertel 5:28
So, they took me to the hospital. And then when I got there, the neurosurgeon and his team, were there already. So we didn’t waste any time. And about an hour and a half after Nick found me, I was on the operating table.
Bill Gasiamis 5:49
And what did they do? Did they go through your head? Or did they go through another part?
Ann Sertel 5:55
Through my skull, I have a permanent shunt in my skull with a lever, and the fluid, or the blood, or whatever needs to be drained, drains down through my stomach.
Bill Gasiamis 6:12
Okay. So the surgery went well. And then you’ve come out of surgery and you are lacking some of your previous abilities. Were you suffering from some deficits?
Ann Sertel 6:28
Yes. Oh, Nick tells me it took three surgeries to get this shunt in me and get it draining. Because at first, they couldn’t drain it fast enough. Is that right, Nick? And so when, when the surgery was over with I could talk I’ve always been able to talk, but I couldn’t walk. I was paralyzed on my left side, completely paralyzed.
Ann Sertel 7:12
That’s the gist of it.
Bill Gasiamis 7:14
So you needed rehabilitation?
Ann Sertel 7:17
Oh, gosh, yes. Lots of it.
Bill Gasiamis 7:21
And you ended up in a facility? How did you end up in the facility you were in?
Ann Sertel 7:26
Well, first I had at-home therapy. And I had physical, cognitive, and occupational therapy. And they would come two to three times a week for like, 20 minutes or so and work with me. But after I don’t know, maybe a month or so. They said they couldn’t help me anymore and that I needed to go to outpatient therapy.
Ann Sertel 7:59
So we have a medical center just down at the end of our street, which has physical therapy. And so I started going there. Again, I went two to three times a week, 20 minutes each.
Ann Sertel 8:14
They worked with me, on the same three, cognitive, physical, and what’s other speech therapy. And I worked with them, it seems like a long time that I went over a year since I did that.
Bill Gasiamis 8:35
When was the stroke do you recall when the stroke was?
Ann Sertel 8:39
July 6 2020.
Bill Gasiamis 8:43
And did you have an awareness of how much time it was going to take for you to get better or to rehabilitate? Did you have any idea?
Ann Sertel 8:58
I did not know and I’ve often thought about that. I wondered if I would be better off knowing was going to take so long to get some kind of recovery or not. I don’t know which one would be better.
Bill Gasiamis 9:12
So you couldn’t walk alone? You couldn’t use your arm?
Ann Sertel 9:18
Correct, Yeah, I had. I had every medical device you could imagine I had a walker, cane, wheelchair, everything.
Memory issues for Ann SertelBill Gasiamis 9:29
Yep. And do you have some trouble now with your memory?
Ann Sertel 9:34
Yes. Like I don’t remember very hardly anything about that whole situation. And sometimes I have a hard time now when somebody tells me something. I don’t remember it.
Bill Gasiamis 9:50
You don’t remember that something occurred and they’re telling you and they’re filling in the gaps for you.
Ann Sertel 9:57
Yes, that’s right. That’s a good way to include it.
Bill Gasiamis 10:00
Yeah, I can relate to that. And somewhere in this picture, Molly, who’s here also comes in, and then she starts to get involved in your recovery. Is that correct?
Ann Sertel 10:16
Yes, it is.
Bill Gasiamis 10:18
All right.
Ann Sertel 10:18
Let’s watch. It’s been a wonderful help. Wonderful.
Bill Gasiamis 10:22
I do hear that. I do hear that. And she’s blushing now. So let’s see if we can get her to tell us how she has been wonderful. But before she tells us that, Molly, tell me a little bit about what you do, where you work, how you came to be at the organization that you’re at.
Molly Hopkins 10:38
I’m an athletic trainer at Wittenberg University in the sports medicine department. I came to Wit 12 years ago, and I work with a variety of different sports, women’s soccer, women’s volleyball, men’s lacrosse, and men’s volleyball. And essentially, also, I’m an adjunct faculty member in the Exercise Science office in our lab that I’m in currently. So yeah, we have a wide variety of tools we have at our disposal.
Bill Gasiamis 11:10
And what’s the point of your role? Now, I’m asking bluntly, because I know nothing about like what a sports therapist does, what’s the point of that specific specialty?
Molly Hopkins 11:25
We’re like an offshoot of physical therapists or physiotherapists in European countries, but athletic trainers work primarily with athletes. There are other offshoots, but that’s our job. We take care of prevention, rehabilitation, you name it, acute care, chronic care, trauma, I do a lot of trauma. I deal with general medicine and primary care.
Bill Gasiamis 11:57
Trauma as a result of sports injuries happened on the field?
Molly Hopkins 12:02
correct that somebody essentially gets severely hurt, fractured bones, and things like that. Fine boarding, head injuries, I deal with all neurological stuff, we deal with it, too.
Bill Gasiamis 12:17
So the point of it is to either rehabilitate people get them healthier, or also get them back on the field.
Molly Hopkins 12:25
Yeah, we are pretty much what we always call surrounds the point guards to sports medicine, you get hurt, we’re going to see you the first day and we’re gonna be with you until you return to the field.
Bill Gasiamis 12:37
Okay, so your awareness about the way that the body moves, and what each muscle is supposed to do, and how it’s supposed to engage is important in that, I suppose in the diagnosis, trying to understand what the person’s lacking, and then also trying to understand how to influence the recovery so that the movement happens the way that it used to happen before, right? Is that accurate? Yeah,
Molly Hopkins 13:09
I teach biomechanics classes. And I analyzed gates, people walking in people’s running, I watched them move, I changed their shoes to make them run faster, better. We use ground reaction forces.
Molly Hopkins 13:29
We have cool tools here that we utilize to look at people’s walking gait and why they’re not using their muscles appropriately. And there are muscle imbalances. I mean, you name it, we can do it. We can look at it. We can look at ultrasounds, we look at MRIs, and we try to piece together the story, essentially.
Bill Gasiamis 13:55
That’s, yeah, go ahead. Alright, so I was gonna say like, so it sounds like what you do. Biomechanics is something that perhaps I’ve not yet come across in rehabilitation for people after a stroke. And that is interesting to me. Right. So I imagined that there would have been a little bit of biomechanics in the training of my occupational therapists, and my physical therapists when I went to see them.
Bill Gasiamis 14:29
But as far as specializing in that space, I’m not sure that they were doing that. I do remember my outpatient therapist walking when I had to learn how to walk again said to be going to take a walk so that he could pay attention to me and notice how I was walking and then he also video-dived for me so that I could look back at it.
Bill Gasiamis 14:57
Because I assumed that my left side felt weird, I assumed that I was also walking strangely. And because I thought I was walking Strangely, I was afraid to run, because I thought that I would cause an injury. And I might land on my foot incorrectly, etc.
Biomechanics and physical therapy after strokeBill Gasiamis 15:20
And he proved to me very quickly, that I was actually walking and running quite well, although I wasn’t, I wouldn’t call it a run, I’d call it a jog more than anything. And I wanted to learn how to run across the road in case there was a car coming in, I needed to get to the other side, that’s as much running as I wanted to do is biomechanics, from your understanding something that is focused on in the traditional physical therapy, occupational therapy rehabilitation space.
Molly Hopkins 15:51
So what I’ve learned through this whole process of the end is sports medicine should be utilized in stroke patients more often breaking down people as they come out of strokes and sending them to traditional physical therapy, or what I call neuro rehab, because this is a neurological injury.
Molly Hopkins 16:18
There are so many things going on there trying to address you getting up getting out of bed, and looking at just the day-to-day function. But once you start to essentially achieve day-to-day function, now we have to look at another level. And sometimes I feel like, that’s when they want to discharge right away. You could achieve, you’ve achieved all these grills, you can get out of bed, you can brush your teeth, you can. Yeah. And so they’re done with you. So they want to discharge you.
Bill Gasiamis 16:47
The bare minimum and the plateau. And do you feel like the goals that are set, are set quite low, the bar is quite low.
Molly Hopkins 17:03
I was shocked, I went to three advanced physical therapy sessions. And they were like, Oh, she’s doing so good. And like she is yes. I was like, we are just scratching the surface friends. We’ve got way more to achieve. Her gait was I don’t know how many videos of her gait I have, I will miss 30 videos of her gait from where we started to where she is now.
Molly Hopkins 17:31
And you know, I’m still picking her apart. Because I don’t like it. And I don’t like this. And I don’t like that we can change this and we can strengthen her hip muscles here will she be more efficient and her gait? Yes. But to be honest with you, Bill, if I gave them some of the stuff that hurt physical therapists, my student-athletes, to my coaches, they would be embarrassed and I would probably lose my job.
Molly Hopkins 17:59
Because it’s just not enough, it’s not enough, we got to do more, we got to make them more efficient, better athletes. So if you take a stroke patient, and model an athletic model after them, here we are, we’re gonna get bigger, faster, stronger.
Intro 18:15
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. How long will it take to recover? Will I recover? What things should I avoid? In case I make matters worse, doctors will explain things. But, if you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 18:40
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called Seven Questions to Ask Your Doctor about Your Stroke.
Intro 18:59
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition. They’ll help you take a more active role in your recovery. Head to the website now, recoveryafterstroke.com, and download the guide. It’s free.
Ageism in healthcare with a 70-year-old patientBill Gasiamis 19:18
I hear you so Ann, now looking back on your experience with your recovery. How would you say? What level would you say your walking ability was? So from one to 10, 10 being amazing and one being needs a tremendous amount of work. Where do you think you were when you were discharged and they gave you the all-clear to go home? So to speak?
Ann Sertel 19:44
Oh, maybe to the most? Right?
Bill Gasiamis 19:48
Okay. Maybe at the time were you comfortable going home in that state?
Ann Sertel 19:56
I was Bill because I had Nick with me. And he has been a tremendous help. And he watches out for me. If I didn’t have Nick or somebody to help me, there’s no way I could be by myself or home.
Bill Gasiamis 20:14
Right? And then you’re saying Nick isn’t home? Is he ever at home? Not at home and you’re at home alone? Was he ever in a situation where he needed to leave you alone?
Ann Sertel 20:28
Sometimes he does, yes. Not very often, and not very long. But sometimes he does. Yes.
Bill Gasiamis 20:36
When Nick had left you alone, what? What are your movements like at home? Are you sitting in the chair and waiting for him to come home? Or you’re confident to get up and go to the bathroom and get back to your chair?
Ann Sertel 20:47
I can get up. I’m competent to get up, go to the kitchen, go to the bathroom. But I don’t go very far.
Bill Gasiamis 20:54
Yeah. And was that the case when you were originally discharged? Were you confident in being able to move about the house? on your own without Nick?
Ann Sertel 21:04
I didn’t know. Yeah, because I was confined to the bed.
Bill Gasiamis 21:13
So even though you went home, your condition was the state of your condition was that you were still confined to bed?
Ann Sertel 21:22
Correct. That’s right.
Bill Gasiamis 21:26
Wow. Okay, so you went home. And really, Nick had all the work to do, he had to make sure that you were sorted in every way, shape, and form, which would have been a difficult task because you wouldn’t have had all the resources available to him either, all the moving apparatuses, all the things to get you in and out of bed to transfer you from one position to another, he may not have had all of that available to him. Is that right?
Ann Sertel 21:58
We did Bill.
Nick Sertel 21:59
The hospital provided a wire lift, and wheelchairs, and the physical therapists were a big help, in guiding us to get her to walk again.
Bill Gasiamis 22:21
Okay, so there was some involvement now? You’re 73 at the moment, or were you 73 when all this happened?
Ann Sertel 22:29
I was 70 when all this happened.
Bill Gasiamis 22:33
Now, I want to get a sense of how you feel about your age. And the time that happened? Do you think age is playing a role in that whole? I can’t do this, or I can’t do that. Or this is not possible for me? Do you think you had an ageist approach to your recovery? And did the other people that were supposed to be caring for you and send you home? Do you feel that they treated you differently? Because you were older? Older than them perhaps?
Ann Sertel 23:03
I can’t speak for them. But yes, I think that’s true for me. Yes. Because you know, you get older, you just expect that, you know, your life is gonna change and things are going to happen. And you’re not gonna be as strong as you were 40 years ago or whatever.
Bill Gasiamis 23:23
And you’re kind of a you’re resigned to the fact that you’re getting weaker, and therefore as a result, you also may be getting sicker. And then it’s just part of the process part of life.
Ann Sertel 23:34
Yes.
Bill Gasiamis 23:37
Hmm. Interesting. Molly. You’re shaking your head.
Ann Sertel 23:44
She’s not buying that at all.
Bill Gasiamis 23:45
Yeah. Tell us about that. Because that’s a massive thing, right? You hear about it, my mum and dad, in their mom’s in her late 70s. My dad is in his early 80s. And what I get from them is and some of it is legitimate, I get it. And it’s a bit of a pain because you know, the older you get pains creaking, and this happens and that happens.
Bill Gasiamis 24:08
They’re pretty up and about my mum’s just had hip surgery, and she’s doing well. But there is a mentality that decline is inevitable, and we shouldn’t fight decline. We should just accept the client as something that’s going to happen. And I think that setup, then creates the out for those therapists who are lacking funding, who are lacking passion who are lacking resources to go, you know, you’re already on the way out. Why don’t we close with you and move on?
Ann Sertel 24:44
Yeah. Well, this is just my opinion, but also It bothers me tremendously, that the insurance companies run the health care system. You know, if your insurance won’t pay or, you know, you get so many visits, And then when your insurance is done with the visits, you’re done, whether you’re done or not, they’re done with you. Yeah. But that’s a whole different topic.
Bill Gasiamis 25:09
It is it is. That’s a common complaint. I’m 50. This year, we’re going to talk about everyone’s age. Molly, how old are you? 38. Just think 38 You think your age is the reason why you’re so positive and so confident that you can restore function to somebody? Or, and your lack of experience? Because you’re only 38? Like, how is it that you’re completely the opposite of the experience the Anns had, as far as what you think is possible for somebody who’s 70?
Molly Hopkins 25:48
Oh, I think age has no discrimination, you can be as accurate as you can be up here, and then you exit this world. You know, I see people that play golf, I’m a huge golfer, and they’re in their 90s. And they’re thriving, and they’re playing golf three times a week, and they’re having a great time.
Molly Hopkins 26:09
Yes, they have their ailments, your 90 Things are not going to move like they used to get, we get it. Yeah, we know that. But if you stay active, the we know this by science, you’re going to decrease the amount of aging that you do. And this is all the root of the problem they’re not out doing things.
Molly Hopkins 26:34
The aging process is going to happen 10 times faster. You leave people alone, you don’t rehab them appropriately. You let them essentially just disintegrate in front of you guess what’s going to happen? They’re going to deteriorate.
Molly Hopkins 26:50
This is not okay. And you know, in the States here, we have SilverSneakers. Now, here at the university, we have people who walk and work out every day, and they’re in their 80s or 90s. I mean, I see those people and I’m like they’re doing it right. They’re staying active.
Molly Hopkins 27:11
Yes, they’re still aging, but they don’t feel like if you compare two 90-year-olds, one that does something and the other one that does nothing. So you can prevent your visit to the nursing home by staying active.
Bill Gasiamis 27:27
Yeah, you can play a big role in keeping yourself out of the nursing home for as long as possible. And also being more stable on your feet and also being more active in the brain and continuing to heal and recover and rehabilitate. Now, in my book, I’ve written a chapter on exercise.
Bill Gasiamis 27:47
And because I’m kind of somebody who likes to avoid exercise, if I can, even though I do go I forced myself to go to the gym today, Molly, you’ll be happy to know.
Ann Sertel 28:00
But so did I.
The right amount of exercise and physical therapyBill Gasiamis 28:02
Congratulations. Thank you. Mine was about a 3540-minute session. What I learned while I was writing the book, what I learned was that exercise doesn’t have to be difficult, hard, arduous, and for a long amount of time, like how little exercise is enough to be beneficial, Molly.
Molly Hopkins 28:22
So what I always look back at is we talked about Master athletes here in the States, right? Anybody that was over the age of 38 is a master athlete. I’m a master athlete. So how much exercise do you need? Well, you go and you look, but to me, it’s 30 minutes, 40 minutes of what we call high-intensity exercise, we look at heart rates.
Molly Hopkins 28:53
You know, I’ve taught you how to be an athlete, we take her heart rate, we give her exercise, and we tell her you needs to do 30 minutes of exercise. It means you’re gonna have good days and bad days with exercise. I mean, it’s not everybody’s favorite. I struggle with my athletes getting them out there, you know.
Molly Hopkins 29:13
But I think you have to set a goal of 30 minutes, three times a week. And make sure that you’re also doing resistance training, keeping your bones strong, your connective tissue, your muscles, because if you’re going to decline the first thing that’s going to decline is your posture.
Molly Hopkins 29:31
We know this. Everybody’s posture is going to decline because of age. You know, you could have osteoporosis, you could have stress fractures, you could have you know, things that happen to you. Hip replacements, like your mom or knee replacements, I mean, things just wear out. But if you stay active during the exercise resistance training, and lifting weights, you’re gonna have a better life.
Bill Gasiamis 29:53
Uh-huh. So, my understanding about the string For training is that it improves bone density. And we’re not talking about being a bodybuilder, we’re just talking about pushing and resisting something a bit heavier than you could normally manage.
Bill Gasiamis 30:17
Perhaps you got somebody looking over you what have you. And also that assists in removing excess sugar from the blood and burning that up. Instead of storing it in the shape of fat cells, which means that that decreases the chances that somebody’s gonna get type 2 diabetes.
Molly Hopkins 30:39
Absolutely, like, essentially, what you’re doing was what we call the energy system pathways. It’s it’s exercise physiology-based, but essentially, you’re improving your diabetic chances. If you stay active, we know this with diabetics, their sugar levels are not going to be spiked as much, and we know that they can control your diabetics with exercise. So as you age, we know type two diabetes, for some individuals, it’s in the cards because of genetics, we know. But if we stay active, we can prevent it. That’s just how it is simple
Bill Gasiamis 31:19
as that. And I suffer from left-side weakness. As a result of that going to the gym can be a bit scary because I get afraid of losing my grip on one of the weights and it falling and injuring me or somebody else. So how do you go about giving somebody the confidence to go into the gym and push weights? What type of things can we do to overcome our doubt about our ability, I would say my left hand can lift, the same amount of weight as my right hand, but for a much shorter duration. So if I can get 10 or 12 reps out of my right hand, I can only get say five or six out of my left hand.
Molly Hopkins 32:07
Going back to him. I mean, it was a lot. We took her to an environment where she was so uncomfortable. You’re going to be uncomfortable. A whole new world, right? You’re being an athlete, right? And Bill, my
Ann Sertel 32:22
biggest My biggest fear is falling. Yep. My balance is not good. And you know, I know I have to get over that. But I’m with you. How do you get your brain? To not be afraid of that? I don’t know.
Bill Gasiamis 32:41
You do it anyway, it sounds like
Ann Sertel 32:44
I do it anyway. Yes.
Bill Gasiamis 32:45
Despite the
Molly Hopkins 32:48
Yeah, you take them to the gym and you show them easy things that they can do. Can they manage the weight? That’s the first thing. You are just introducing a simple thing. Like when I came up to see and the first time we went to the gym, and I said, Show me what you’re doing. She did. We just made small adjustments here and there to help them essentially facilitate her to be able to push the leg press machine and not feel scared. I yeah, I tell my athletes all the time, the first thing I’m going to do is make sure that you can protect yourself. Right? That is what we’re doing. We’re taking you to the gym so you can protect yourself. If you fall, are you going to be able to pick yourself back up? We’ve talked about this. Yes. And I want you to be able to stay at home and be safe. Protect yourself. That’s all.
Bill Gasiamis 33:44
Do you feel more confident? No easy remedy? No. And I’m sorry, do you feel more confident with your ability? Yes, I do. What is it done for your mindset?
Ann Sertel 33:55
Well, everything when I make it a step in the right direction, I feel like okay, you can do this, you can do a little bit more, a little bit more, a little bit more. But it is such a long process.
Bill Gasiamis 34:08
Is it also hard?
Ann Sertel 34:11
Yes, it is.
Bill Gasiamis 34:14
Is it the hardest thing you’ve ever had to do?
Ann Sertel 34:17
Yes, it is. And Bill, I taught elementary school for 40 years. So that you know this is a whole new ballgame for me.
Bill Gasiamis 34:29
And if I recall correctly, one of your students was the one and only Mali. Yes. So do you feel proud of yourself that you were able to influence the generation of human beings, specifically Mali who was going to be involved in your recovery from stroke all those years later?
Ann Sertel 34:49
I am so proud of her bill. I’m going to tell you this and I’m probably going to embarrass Molly But I don’t care I guess when Molly was in sixth grade, she struggled with learning. academics were very hard for her. And when I found out that she was a sports medicine person, I couldn’t believe it. I thought you’ve got, you know, you went to Wittenberg, and you’ve got degrees, and you’ve got all this training. I just am so proud of her determination and her effort and her perseverance, because I know it could not have been easy for her. It
Bill Gasiamis 35:28
sounds like a similar story. It doesn’t sound like somebody who wasn’t supposed to be able to achieve certain things. And many people would have said, shall never amount to anything. Can prove that it’s possible to recover and to overcome and to find ways to become educated to achieve great things in life. And it’s similar to stroke recovery. It’s applying a similar mindset to stroke recovery, isn’t it?
Ann Sertel 35:57
Yes, it is. I never thought about that. But you’re right. Yes.
Bill Gasiamis 36:03
Because you’re you had your doubters, and then Molly had her doubts, but the two of you have seemed to come a long way when you found a new way to approach this and perhaps not to listen to your data.
Ann Sertel 36:16
Yes, that’s true. Yes. Molly, do you agree with that, Molly? Absolutely.
Molly Hopkins 36:22
We’re such a parallel. It’s unbelievable.
Ann Sertel 36:27
Okay, isn’t it?
Bill Gasiamis 36:30
We have a good student, Molly, like and were you a nice student, not a good student, a nice student.
Ann Sertel 36:35
She was very old. Am I kidding? My parents?
Molly Hopkins 36:40
My parents are both teachers. So there was no deviating from the academics. But one thing that they did, they did always instill is just work hard. You know,
Ann Sertel 36:54
Molly’s hard workers. Yes, she’s a very hard worker.
Molly Hopkins 37:00
I mean, if we were not German? No, it was not. So it took a lot to just get through the elementary school level. And once I finally got to high school, it was okay. But college is where I thrive. And once you find your niche, that’s where you start to say, open up the engines, now you can do whatever you want.
Bill Gasiamis 37:25
Remember earlier, Malia said that I was very comfortable avoiding exercise and not going to the gym, etc. But I have found some amazing things that occur when I do what’s hard when I go against what my nature is telling me to do, which is, you know, run, run for the hills, and then come back. It’s like, yeah, do what’s hard, do the hard thing, the hardest thing I’ve had to do is recover from stroke, I’m still recovering.
Bill Gasiamis 37:55
And it’s been 12 years. But the next hardest thing I had to do was write this book, you know, it took four years to develop the model, to then write the book, and then to get it out. And I’m not academic, either, I hated school, and I’m all my teachers hated me because I made their life impossible. And it was because I was bored.
Bill Gasiamis 38:20
And I didn’t find what was interesting to me, and what my niche was. And I was labeled by teachers, as you know, one of my teachers said, I wish I could write in your report that you were stupid. And that kind of stuff. So, you know, I went through all of that. And, I didn’t believe that I was stupid. And I made it their fault.
Bill Gasiamis 38:45
I sort of used to say to them, Well, you know, I’m not learning anything important to me, or that I want to know, it’s your responsibility to teach me. And then what I realized later on in life was I had to seek out the things that I was interested in. And I had to seek out the people who would be my new teachers who were going to teach me those things.
Bill Gasiamis 39:06
When I did start doing that and started to find things that were interesting to me, I made it my passion, and what better way to discover yourself than to sort of become responsible for your learning and to do the things that you love and not expect other people to teach you.
Bill Gasiamis 39:24
Now for me, it happened to be stroke recovery, that brings in neurology that brings in physical therapy that brings all these things that are important to me, but are also very interesting. And I love hearing about everybody else’s journey with their recovery.
Bill Gasiamis 39:42
And of course, the podcast is about demonstrating how terrible things are when we start off the stroke recovery journey, and how they slowly gradually, you know, it’s at a snail’s pace, start to improve and we start to get better but we do need to recruit amazing people to help us we need to not give up and find us ourselves kind of saying, throwing our hands in the air when the insurance company, for example, says, well, that’s as far as I can get.
Ann Sertel and Molly Hopkins’ reunion after 23 yearsBill Gasiamis 40:16
So Molly, if I could ask you, for you to kind of rate the state of Ann when you guys first started to work together in her physical ability between zero and 10, where would you have her on the scale? When you first saw her?
Molly Hopkins 40:39
When I first saw her, it was hard. It was really hard to see you for the first time. Well, I and I hadn’t seen her in 23 years. That’s the killer of it all, I hadn’t seen her. I went up for a golf tournament, and I stopped by their house. And that was the first time I saw her.
Molly Hopkins 41:01
And I knew right away when I walked in the door what had happened because I could see it all. And then that was hard to take in. Because she means so much to me. And like, when I saw her I was like, holy cow. I was like, okay, and then Nick told me that she had just started following conversations when I saw her in May 2022.
Molly Hopkins 41:30
And she came to one of our soccer games, that September, and yeah, nothing had improved. And she was telling me that she was working so hard in physical therapy, and I was googling sleep terribly. I’m gonna read you like it. It’s three, because your movie, your progress progressing? You weren’t doing anything, but she was working so hard.
Molly Hopkins 41:54
And that’s what was the killer of it all. She said to me, like, the squad, the squad stopped growing. And she would tell me what she was doing. And I was just like, this is heartbreaking. Because if this was one of my athletes, I would say we need to go back to the drawing board. What’s going wrong? We need to reevaluate everything because I can’t put you out on the field like that.
Ann Sertel 42:20
That’s true.
Bill Gasiamis 42:23
So you’ve been working together for a little while now. How long?
Molly Hopkins 42:27
Almost a year over a year now.
Bill Gasiamis 42:32
How far would you rate the recovery? So from a three, how far along Do you think and have come on that journey?
Molly Hopkins 42:42
Well, I’ll give you Ann’s percentile. She says she’s 80 to 90% recovered. To me, I’m still picking her apart. I still have way more to accomplish with her. I write her exercise programs for two months. She works out with those twice a week. And then she goes to yoga and then lifts.
Molly Hopkins 43:06
So she works out five days a week. The Yoga is for recovery, which is on Mondays and Fridays. But then meat and potatoes are Tuesdays, Wednesdays, and Thursdays. And I’m still picking her apart because I’m not happy with it. So to me, it’s like a seminary. She’s functional. But is she my functional? No, I want more. To be honest, I want more.
Bill Gasiamis 43:33
Sounds like a hard taskmaster. Were you that hard on her when she was at school?
Ann Sertel 43:38
I don’t think I was No. Was I Molly?
Molly Hopkins 43:44
Ann was so good in the classroom. I told my athletes like Ann is how I talked to them. I’m firm, but I’m fair.
Ann Sertel 43:58
That’s it. I tried to always be firm and fair.
Bill Gasiamis 44:01
Yeah. I want to ask you, Molly, because one of the things that’s interesting is that at around the age of 30, so maybe around 20 years ago, I decided I wanted to be a life coach. And I went and did a course. And when I went and did this life coaching course, it was at the suggestion of my counselor, and my psychologist, she said, You should be a psychologist and I said, that’s gonna be a lot of school.
Bill Gasiamis 44:31
Like, I don’t think I can handle that. Maybe I’ll do something where I’m helping people but I don’t have to go through six years or seven years of university. And I had been in counseling say for about four or five years by the time I became a life coach.
Bill Gasiamis 44:47
And I started helping people along that kind of how do I overcome myself kind of journey that they were on and if I wasn’t qualified to do the psychological stuff, but I was qualified to teach people the next step, this is the next step, go and do that. And then let’s do the next step and the next step. So it was kind of holding their hand keeping them accountable.
Bill Gasiamis 45:09
And what I realized was that one of the things that I hadn’t had was a life coach. So I hadn’t had somebody coach me through the steps that I needed to achieve, to get to my goals, whatever they were. And I was getting counseling, and I was handling my mental health.
Bill Gasiamis 45:23
But I didn’t have somebody as a mentor to guide me to take me through the process of evaluating what I was doing, giving me honest feedback, and then helping me reassess and move on. And what I did is I ended up getting someone to be my life coach, while I was seeing my counselor, and I kind of matched the two.
Bill Gasiamis 45:44
And they’re completely different roles. One of them helped me talk things through, and the other one helped me take action and take action steps toward my goal, whatever that was. And then, as I’ve continued, helping people through my coaching role, and then my recovery after stroke coaching this, some of the clients that I deal with.
Bill Gasiamis 46:06
What I realized is that we don’t have that normal people don’t have compared to athletes, we don’t have somebody next to us for our entire life going, you can do this and improve and you can stop doing that, and you’ll get a better result. And athletes, even Roger Federer, even Rafael Nadal, who are the world’s Joker, Djokovic choose playing in my hometown right now.
Molly Hopkins 46:37
Yeah.
Bill Gasiamis 46:38
Those guys are the best of the best in their chosen sport. And yet, they still have a coach next to them. We have the worst at the worst of our chosen life. And we have nobody helping us to guide us through because we don’t see the value in that. So I want to get your sense of that.
The importance of having the right coach in physical therapy after a strokeBill Gasiamis 47:01
Like, why is it important to have people with you along this journey, even at the age of 70? Because I assume that Anne’s not going to get away with it. For the next however long you guys are around each other she’s going to be whether she likes it or not me to go to the gym and train one way or another. Why is it important to have people next to us?
Molly Hopkins 47:26
I don’t know. I feel like I’ve been in sports all my life. And I feel like I guess if I could use an analogy, a caddy, right? A golf caddy, right? We need somebody who gives you the yardage and tells you this is what we should do. These are the obstacles in the hole. And this is what we should do.
Molly Hopkins 47:57
That’s what every stroke patient should have. It’s a social worker, a physical therapist, a nurse, a physician, these people have no idea what is ahead of them when they come out of that hospital. That’s true. Charge paperwork. Yeah, she got her discharge paperwork.
Molly Hopkins 48:15
She was sent to a rehab hospital, a rehab hospital center, it’s almost like good luck. Yeah, it is. And these people have no clue. And they come in with home health care, they get discharged, they get moved on like somebody has to say, you’re doing the right thing. And if that’s coaching, then that’s what it is.
Molly Hopkins 48:39
I’m calling place to Ann and I’m saying like, let’s run this play because this is what’s going to make or break you. And I think more and more people need to look at strokes and model their rehabs if it’s not an athletic model. It’s how we are working with athletic populations. If I could put it that way. I just think these poor people, you lost your left side Ann lost her left side.
Molly Hopkins 49:12
They have no stability. They have no idea these poor families have no idea what’s going on. They have just been put through the wringer. They don’t know if their loved ones gonna make it or not. They’re so scared. So it’s a lot of moving parts, It’s a lot of tough decisions, a lot of tough questions, and they’re not ready for it. They’re not prepared for it.
Ann Sertel 49:36
And Molly, you don’t even know what questions to ask.
Molly Hopkins 49:40
No, no, no one’s counseling them. So yeah, they should have somebody walk into that room after these people have been diagnosed with strokes and say, This is what’s going to happen next. Do they have all the answers No, but I don’t have all Insert. I tried to do the best for my athletes and the best for but I don’t have all the answers. That’s why we research. What’s gonna make you better?
Bill Gasiamis 50:12
We’re all winging it. But you kind of need a little bit of guidance like you need to have some hypothesis and some kind of path to go down to try it to see, is this right? Is it wrong? Will this work? Do I enjoy this, and then and then be able to reassess and then make another decision and then keep going in an in the same direction or a different direction, you know, minor micro-adjustments to sort of continue towards the goal, even though you’ve kind of been taken off the path a little bit.
Bill Gasiamis 50:45
That’s one of my biggest challenges is that people find the podcast and they it’s, sometimes it’s their first source of, Oh, my God, this is normal, or, Oh, my God, I can do this, or Oh, my God, I can try that. And it’s really strange, that I’m the first source for them that they stumbled on that helps them navigate their recovery.
Bill Gasiamis 51:11
And I’m glad that I exist. And I am because that’s what I think I was missing. And that’s what I was trying to create, not realizing that I was succeeding and creating that for people. And what these stories do specifically and story and your story is that they offer more hope it offers hope.
Bill Gasiamis 51:35
And an example, that you guys are setting, that perhaps other people who are not 70 that might be in a similar situation, might be able to go okay, I know one thing that I can do, that’s going to make my life better. And that doesn’t have to be a five-day-a-week regimen that might even just be 30 minutes, one day a week, more than what they were doing beforehand.
Bill Gasiamis 52:02
And a little bit of guidance in the gym, from somebody just to get them on the right path. And then maybe every month or every two or three months to get that feedback, that coaching so that they know you’re on the right path. Or you can be more efficient like this.
Bill Gasiamis 52:20
So you can get better results like that. Because there’s one thing about working hard in the wrong direction. It’s so shit when you work hard, and you’re going in the wrong direction. It’s so discouraging that it the good to work hard and be going in the correct direction.
Molly Hopkins 52:34
Yeah, you need a full team. And I mean, the stroke team should start from the neurosurgeon down, you survived the stroke. Now, this is what we’re doing next. And you need a full team of qualified individuals to say, Yeah, this is this is right, you’re moving in the right direction.
Molly Hopkins 52:55
But here’s the biggest thing when they go from physical therapy discharge, and there are still deficits, what are we going to do with them next? That’s when there should be that relay point. Okay, you’re done with physical therapy, but we’re going to relay you on to our strength coach.
Molly Hopkins 53:17
So, he’s going to help you with your strength. And I model it. What I’m doing with Ann is when I went to that last physical therapy visit with her, I literally said to the physical therapist, it seems like we’re not going anywhere here. And I said it point blank to that guy and I said, I think we need to let her go and let me have her.
Molly Hopkins 53:37
And I took her over. And that’s what we do here. We have our athletes go to physical therapy. But then at that point, when they’re ready to make that return to play, they’re not ready to go to the field. They’re ready to come to me. And now I start to put the finishing touches on them.
Ann Sertel 53:55
I agree, Molly.
Molly Hopkins 53:57
That’s what we need. You need the finishing touches. They’re not ready to resume full activity. They’re not. We know that. Like, it’s just where we’re at. But you need more work done.
Bill Gasiamis 54:11
Yeah, yeah. So and going forward? How confident do you feel about your ability to continue to improve?
Ann Sertel 54:22
As long as Molly’s involved with me, I’m very confident because I feel like I’ve made huge gains with her. If I was on my own, probably not much.
Bill Gasiamis 54:34
Would you have accepted the narrative “we’re done with you? We’ve got nothing more to offer. Go home and get better on your own?”
Knowing when to defy the oddsAnn Sertel 54:51
Yes. And I didn’t know what to do. You can’t get better if somebody doesn’t show you?
Bill Gasiamis 55:00
Yeah. That’s the challenge, isn’t it? It’s that whole, going back and accepting the word of somebody who might be wrong with what they’re saying. And then you’re sitting in a situation that you shouldn’t be sitting in and suffering unnecessarily. Because you’re already suffering because you’ve had a stroke, and you’ve got to deal with all that stuff.
Bill Gasiamis 55:23
And then dealing with something that’s not true. And believing that it is true, then that’s unnecessary suffering. And that’s probably the lesson there is not to give up just because somebody with a white coat said, that’s something. Yeah.
Molly Hopkins 55:46
Well, no one should ever, ever, ever in the medical profession, say there’s nothing more like there’s always another option.
Bill Gasiamis 55:54
Yeah. Well, I appreciate you guys getting on to have a chat with me. Thank you so much for doing that. My pleasure. It’s a great story of hope and possibility. And Molly, your organization, if people wanted to reach out to you, the general public in your area, are they just are they able to do that?
Molly Hopkins 56:18
I’m kind of a hidden gem. I only work with college athletes. Ann, we put her on the roster.
Ann Sertel 56:37
I get to travel with the team.
Molly Hopkins 56:38
Yeah, she’s on the team roster.
Bill Gasiamis 56:42
She put the work in 30 years ago. So you know, this is the playoffs.
Molly Hopkins 56:48
Yeah, she’s now on the teams here. Anybody can always give me an email. I don’t mind.
Bill Gasiamis 56:54
Yeah. And I suppose what I’m saying is, if there’s a way that we can connect people, perhaps there might be some people interested, who get triggered to say, Hey, maybe I can improve more? Who would you suggest I see? Or how would you suggest I go about this, maybe you can just say, find a sports therapist that specializes in this particular thing in your area, and there will be a ton of your kind of colleagues around the place.
Bill Gasiamis 57:23
And maybe we’ll be able to encourage people to go ahead and do that. Ann if anyone wanted to reach out to you, would you be happy to chat to anybody via email and just encourage them and give them a little bit of hope?
Ann Sertel 57:37
Sure. Because I think everybody needs it.
Bill Gasiamis 57:43
Yeah. Well, you are amazing thank you so much. Give our love to Nick because he’s dealing with a lot too and he’s probably underqualified as well. But seems like he’s done a decent job so far. Come in coming the coming to the screen.
Nick Sertel 58:09
It was one thing I’d like to add when I was getting out of the hospital. There was more than one medical professional who told me and Ann in six months it was as good as you’re ever going to get. But I didn’t believe that.
Nick Sertel 58:32
And after six months, she was not near where she is today. Thanks, Molly, and thanks, everybody. It’s been a team effort. And she’s coming along. I don’t see that anything is going to stop Ann. If she wants to.
Bill Gasiamis 58:56
I just can’t believe that in 2024. Or whatever year it was that that happened in the 2020s. A doctor still has I don’t know that they’re driven to say that junk. I cannot believe that.
Ann Sertel 59:13
I remember that.
Nick Sertel 59:14
There’s more than one too.
Ann Sertel 59:16
Yeah, six months, whatever she’s doing in six months is what it’s going to be.
Bill Gasiamis 59:21
Wow. Well, thank you so much, everybody, for joining me. I appreciate it.
Ann Sertel 59:28
Thank you. And Bill, how do you pronounce your last name?
Bill Gasiamis 59:32
My last name is Gasiamis.
Ann Sertel 59:35
Gasiamis okay.
Bill Gasiamis 59:36
That’s it. Nailed it. Well, I appreciate you guys. Thank you so much. I’ll put it out there and make everybody aware of it. And then also, was it Beth that contacted me, was it? Say hi to Beth and thank you to Beth and I’ll make sure she gets to have Listen.
Bill Gasiamis 1:00:01
Well, thanks for joining us on today’s episode to get a copy of the book, The Unexpected Way That Stroke Became The Best Thing That Happened, go to recoveryafterstroke.com/book. To learn more about my guests, including links to their social media, and to download a transcript of the entire interview, go to recoveryafterstroke.com/episodes.
Bill Gasiamis 1:00:22
Thank you to all those people who have already left a review about the podcast. It means the world to me podcasts live and thrive because of reviews. When you leave a review, you’re helping other people find this content much easier. And that is helping them make their stroke recovery just that little bit better.
Bill Gasiamis 1:00:42
I receive feedback every week from somebody who has appreciated an episode of the podcast and that has helped them in their recovery, feel less alone will get some new bits of information that they’ve been able to act on. So if you haven’t left a review, and you would like to the best way to do that is go to iTunes and Spotify and leave a five-star review and a little bit about what the show means to you.
Bill Gasiamis 1:01:08
If you’re watching on YouTube, I love it when people comment below the video. I love to interact with people who leave comments, I try to respond to all the comments. I’m doing a really good job at that at the moment. And if you like this episode, and want notifications of future episodes, subscribe to the show and hit that notification spell.
Bill Gasiamis 1:01:31
If you’re a stroke survivor with a story to share, come and join me on the show that interviews are not scripted, you do not have to plan for them. All you need to do is be a stroke survivor. If you are a researcher who wants to share the findings of a recent study, or you’re looking to recruit people into studies, you may also wish to reach out and be a guest on my show.
Bill Gasiamis 1:01:51
If you have a commercial product that you would like to promote that is related to supporting stroke survivors to recover. There is also a path for you to join me on a sponsored episode of the show. Go to recoveryafterstroke.com/contact Fill out the form explaining which category you belong to.
Bill Gasiamis 1:02:07
And I will respond with more details about how we can meet via Zoom. Thank you so much once again for continuing to listen for responding for giving me feedback for letting me know what the podcast means to you. I appreciate you see you on the next episode.
Intro 1:02:30
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals’ opinions and treatment protocols discussed during any podcast or the individual’s own experience. Wedo does not necessarily share the same opinion nor do we recommend any treatment protocol discussed.
Intro 1:02:47
All content on this website at any linked blog, podcast, or video material controlled by this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis, the content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.
Intro 1:03:09
The information is general and may not be suitable for your personal injuries, circumstances, or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure, or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional, your doctor, or your rehabilitation program based on our content.
Intro 1:03:31
If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be called 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department medical information changes constantly.
Intro 1:03:51
While we aim to provide current quality information in our content. We did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency, or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with the links we provide however third-party links from our website are followed at your own risk and we are not responsible for any information you find there.
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Patrik Hutzel from the intensive care hotline interviews Bill Gasiamis about the survival chances after a stroke.
Intensive care at home
Twitter
Intensive care hotline
Highlights:
02:26 Introduction
08:40 Bill’s stroke recovery story
13:31 What’s the next step?
16:46 Knowing when to push back
22:13 The importance of nutrition in stroke recovery
26:26 Age discrimination in stroke treatment
35:46 The seven questions to ask your doctor
41:32 The difference between a stroke victim from a stroke survivor
44:32 Why the stroke is the best thing that ever happened
54:44 You’re not alone
Transcript:
Patrik Hutzel 0:00
I’ll read out the comment from Laurie here who says, I’m four years post hemorrhagic stroke and never recovered. Also, I consider myself a stroke victim, not a survivor.
Bill Gasiamis 0:11
That’s a really important distinction to make. So, if you’re a stroke victim, you’re in a situation where you’re allowing what happened to you, to impact you in a negative way and only in a negative way. If you’re a stroke survivor, you’ve already overcome one thing, you didn’t die from the stroke and as a survivor, you are then guided to help you look for solutions to problems because that’s what we generally need to be.
Bill Gasiamis 0:42
Stroke creates many, many, many problems. If you always focus on problems, you will get more problems. If you focus on solutions to problems, you will get more solutions. As a survivor, a survivor needs to focus on solutions. Victim will not be able to change their mindset to focus on solutions, they will focus on all the reasons why this happened to them. What did I do wrong in a past life? Why has God punished me? None of that is useful for improving your outcomes for a good recovery.
Intro 1:23
This is the Recovery after Stroke podcast. With Bill Gasiamis, it is helping you navigate recovery after a stroke.
Bill 1:37
Hello, and welcome to the Recovery after Stroke podcast. If you are a stroke survivor with a story to share about your stroke experience, now’s the perfect time to join me on the show. The interviews are not scripted, you do not have to plan for them.
Bill 1:49
All you need to do to qualify is be a stroke survivor who wants to share your story in the hope that it will help somebody else who is going through something similar. Also, by sharing your story you feel better about your situation, you get something off your chest, and it does help to improve your case and your recovery.
Bill 2:09
If you are a researcher who wants to share the findings of a recent study, or you are looking to recruit people into studies, you may also wish to reach out and be a guest on my show. If you have a commercial product that you would like to promote, there is a path for you to join me on a sponsored episode of the show.
Introduction – Patrik HutzelBill 2:26
Just go to recoveryafterstroke.com/contact, fill out the contact form and briefly explain which category you belong to. And I will respond with more details about how we can connect via Zoom. Now today’s episode is a little different.
Bill 2:42
Instead of me being the interviewer I am being interviewed by my friend and ICU nurse Patrik Hutzel. Patrik operates the advocacy service for people who have loved ones in the ICU called the intensive care hotline. He supports people from all over the world who need to have difficult conversations with medical professionals when a loved one ends up in the ICU.
Patrik Hutzel 3:08
G’day Bill, thank you so much for coming on to this call. It’s it’s a great honor to have you on. Let me quickly introduce you, Bill, to anyone on this call. And thanks to anyone who’s watching this on replay who can’t join us live. Today’s topic is survival chances after a stroke.
Patrik Hutzel 3:30
And that’s why I brought on Bill today. Bill is a three-time stroke survivor and is an inspiration for many stroke survivors all around the world. And I’m not exaggerating here because I know Bill you’ve got your podcast you have interviewed hundreds.
Bill Gasiamis 3:49
265 people on the Recovery After Stroke Podcast.
Patrik Hutzel 3:55
And you would have interviewed I know I was a guest on your podcast. So thank you very much. But you would have interviewed other stroke survivors, you would have interviewed doctors, nurses, I don’t know. Can you talk a little bit more about your podcast as well?
Bill Gasiamis 4:09
Yeah, so the people interviewed were mainly stroke survivors. So they share the story of the time that they experienced a stroke. They then share their story of how they’re going after the stroke. And sometimes, if they’re long enough, out of stroke, you hear about the story 5, 6, 7, 8 years post stroke.
Bill Gasiamis 4:28
So what we try and do is capture the whole timeline, so that we can tell people that if you’re feeling unwell at the moment it starts to improve and then things get better and then a lot of people most people get back to some kind of a regular life routine and start going back to work or becoming involved in their community again.
Bill Gasiamis 4:49
And then we interviewed doctors who come on and share some of their wisdom about what people can do to support stroke recovery and what’s some of the available medical options. We also interviewed past physical therapists, I think I’ve interviewed chiropractors, I think I’ve interviewed speech therapists and caregivers.
Bill Gasiamis 5:10
So some of the caregivers who are caring for somebody that’s had a stroke, we’ve had people that have had a stroke, in utero. So before they were born, we’ve had people that have had a stroke in their teens in their 20s 30s 40s 50s 60s. I mean, it’s just every type of person you can imagine.
Bill Gasiamis 5:32
We’ve interviewed people who have had ischemic strokes, hemorrhagic strokes, strokes caused by atrial fibrillation, strokes, caused by a hole in the heart, strokes caused by sneezing, believe it or not, strokes caused by carotid artery dissections or dissections of other blood vessels. So we’ve had people that have had strokes as a result of car collisions. Every type of person you can imagine, there is a story on there that somebody listening here today will relate to.
Patrik Hutzel 6:06
Yep, that’s fantastic Bill. The reason I labeled today’s episode, is what are survival chances after a stroke. This is a question Bill that we’re getting weekly at intensivecarehotline.com. You know, this is, in one form or another? Maybe not always, in those words, but pretty close to those words, what are survivor chances after a stroke?
Patrik Hutzel 6:28
I mean, you’re well aware that we are serving families in intensive care, you know, we have so many families contacting us, hey, my mom, my dad, my spouse, my child is in ICU after a stroke, what are the odds of survival?
Patrik Hutzel 6:44
My response to that is always, well, the odds of survival are pretty good because 90% of intensive care patients approximately survive. But it is so much better to have a stroke survivor here. And, you know, hear it from you directly. What are the odds? You know, or what are the chances of stroke survival? And if you can share more about your own story?
Patrik Hutzel 7:10
You know, I’ve been very impressed by your answer. I mean, we’ve known each other for years, through various entrepreneur groups. You know, I’ve been very impressed and very encouraged by your story. Can you share more about what you know, about survivor chances after a stroke? And then we also want to talk down the line about your upcoming new book that you’ve just written. What’s the title of your book, again, Bill?
Bill Gasiamis 7:37
Stroke, The Best Thing That Happened.
Patrik Hutzel 7:40
Yeah, yeah, that’s an amazing title.
Bill Gasiamis 7:43
Bit of a weird title. People don’t relate to it immediately. Because it’s not the best thing that happens to you. It wasn’t the best thing that happened to me at the beginning. And the book is about post-traumatic growth. And that’s really what the podcast tries to demonstrate.
Bill Gasiamis 8:00
So every person that is associated with my podcast is either a stroke survivor or deals with shock survivors and supports stroke survivors and gets great results with stroke survivors. So the statistics about stroke say that one in four people will have a stroke in their lifetime.
Bill Gasiamis 8:20
And 20% of those people won’t survive after the first stroke. But most of those people will survive now about 60% Get back to work. And then there’s a large percentage of people that don’t get back to work. But I’m not sure how far out those statistics go.
Bill Gasiamis 8:40
Whether they track people 4, 5, 6, or 10 years, post-stroke, I know that a lot of people, at least 60% Get back to work after their first stroke. And then a lot of people do get back to work after very many years. I had a hemorrhagic stroke in 2012, the first time that my stroke occurred was because of a bleed that occurred in a blood vessel called an arteriovenous malformation.
Bill Gasiamis 9:10
And that blood vessel burst and it bled. And as a result of that it first bleed. Then I had a second blade on in the same blood vessel, but six weeks later, and then, approximately two and a half years after the first incident, I had a third bleed.
Bill Gasiamis 9:29
That third bleed resulted in brain surgery to remove the faulty blood vessels. So they opened my head on the right side, they went in, they removed the faulty blood vessel and then I had to go through rehabilitation because I had to learn how to walk again and use the left side of my body again.
Bill Gasiamis 9:47
And it was a pretty intense three or so years because at that time, each time I had a blade I noticed different symptoms. They were physical symptoms they were cognitive issues, I had problems with fatigue, I had problems with understanding what people were saying and what I was trying to say to them, and I couldn’t finish and start sentences.
Bill Gasiamis 10:11
At one point, I couldn’t recognize my wife. I had difficulty going to work, I couldn’t work for the majority of three years. I wasn’t allowed to drive. I had a passive life for three years trying to get healthy and heal, and, and recover.
Bill Gasiamis 10:32
And in that time, In February 2012, there weren’t a lot of services available for me to understand what my stroke recovery might be, like, what I could achieve, and what some of the obstacles that are could overcome. So I set out to find other people who were like me, that’s how the podcast came to be.
Bill Gasiamis 10:53
And I discovered that every single person on my podcast is a stroke survivor. And some of them have been locked-in and have experienced locked-in syndrome as a result of a brainstem stroke. And those people were, I would say, in a worse state than any of the other people that I’ve met, because when you experience brainstem stroke, it affects your entire body, not just one side, either the left or right side, like me.
Bill Gasiamis 11:22
And as a result of that, those people tend to wake up after the stroke, not being able to move their entire body. So they’ll be in ICU, and they’ll only be able to blink, to respond to people chatting and speaking to them, their recovery seems to be the longest and the most arduous.
Bill Gasiamis 11:41
But it is the most unbelievable as well because they go from not being able to move anything other than their eyes that go to very, very often and most times becoming rehabilitated and active members of their community. Many of those people go back to work.
Bill Gasiamis 11:59
Many of those people achieve amazing things in their lives. So my journey, when it started, was unexpected. I was 40. I was 37 years old, I was a father of two, and I was married, and I had a business that I ran in Australia. So I was overworked or stressed I was doing all those things.
Bill Gasiamis 12:24
What the stroke led me to achieve was a lifestyle change led me to achieve a different way of going about things asking for help and re-educating myself on what was required for me to move forward, after the stroke, how to outsource all the tasks that I needed to outsource for my business and how to keep it going even though I was quite unwell.
Bill Gasiamis 12:49
At that time, when the podcast started to become popular, people started reaching out for coaching. As a result of that, I still have the property maintenance business, which I started many years ago, that was the way that I made a living.
Bill Gasiamis 13:06
Now I offer coaching counseling and support services, not counseling in a formal situation. I’m not a qualified counselor or anything like that. But just acute counseling for people who want to know what to do next in their stroke recovery path. And often that is with the caregivers, mothers, fathers, brothers, and sisters, of people who have had a stroke.
Patrik Hutzel 13:31
I would be very curious to find out Bill what can they do next because I know that is of high interest to our audience here. After all, we can teach them what to expect in the ICU. But where my area of expertise stops is outside of the ICU, especially for stroke survivors. So can you share more about what people can do after they leave the hospital or after they leave the ICU I think that’s the journey that you’ve been through.
Bill Gasiamis 14:00
It depends on the country that they’re in. But if they have insurance and insurance is covering them for a duration, then I would go after whatever can be offered by the insurance providers and do every single possible thing that they offer.
Bill Gasiamis 14:18
One of the things that I hear often is when the provider or the caregivers or the rehabilitation providers say that the patient has experienced a plateau and as a result of the plateau, that they are going to cut services or they’re going to no longer fund certain services. If it’s possible, I would go out of my way to not accept their diagnosis that the person has hit a plateau and as a result, funding is stopped. Now I’m not exactly sure how you do that.
Bill Gasiamis 14:57
But to not accept that response and that diagnosis, and to push back on the supposedly plateau is a really big thing. Because if you can extend the amount of rehabilitation time that a person has the better results they will get, even though they have reached the supposed rehabilitation plateau.
Bill Gasiamis 15:20
Now it’s just a technique, I believe it’s just a technique for insurance providers to get out of supporting somebody for a longer amount of time. Now, you have to be your advocate. So all you have to be the advocate for the person who can’t be their advocate if you’re a caregiver.
Bill Gasiamis 15:40
So in that case, what I would say is reach out to your local community and see if they are, if there are support services, you can just do a Google search online, stroke support services, in your guide you through the local process, what has to happen locally. So I know it’s different in Australia, I know it’s different in the UK, and in the United States.
Bill Gasiamis 16:01
But some organizations stroke foundations in all those countries, where you can reach out to and get some guidance as to where to, as to how to proceed from a certain spot in the recovery, which perhaps is the plateau spot where people tell you there’s a plateau.
Patrik Hutzel 16:24
Bill thank you for that. And I just want to reiterate what you’ve just said there, because I’m a big believer, and this is what we advise our clients, everything in life is negotiable. It doesn’t matter what your insurance says, or, you know what you’ve said, renegotiate the diagnosis, I could not agree more with you.
Patrik Hutzel 16:46
There’s a lot of that work that we do with a similar mindset saying, well, you can’t just accept what they’re telling you, here are potentially other options. And once we all know, I mean, we both speak to people around the globe, really, in our work, you know, you talk to people in the US, I talk to people in the US.
Patrik Hutzel 17:06
You know, with enough clinical insight, you can always go back to doctors, nurses, even hospital executives, and you can say hang on a second, discharging my mom, my dad, or whatever it is to this facility is premature. We need to continue treatment here. And here’s the reasons why. You will also often find that if you challenge that with health insurance, there is often an appeals process.
Patrik Hutzel 17:34
And if you have, you know, whether it’s you as an advocate, or if you get a clinician in like myself, you know, we have often turned those situations around simply by looking at the clinical diagnosis and saying, hang on a second, this is purely driven by money, it’s not driven on clinical need. Let’s look at the clinical need.
Patrik Hutzel 17:55
And let’s advocate on the clinical need, or sometimes what we see in the US in particular, that trying to send people to other states for rehabilitation, two hours, three hours away from their hometown, and you go like, This is madness. I don’t know, I mean, you and I have spoken offline, I believe you’ve recovered with your family being around. And that was probably also critical to your recovery, I would imagine.
Bill Gasiamis 18:29
Absolutely. And I didn’t have to because I live in a major metropolitan city I didn’t have to travel to and three hours to my appointments, that would have made it difficult. And I had a lot of appointments during the week for rehab, especially after I was released from hospital rehabilitation where I was for a month in outpatient rehab, I had three appointments a week. Now, if I had to travel three hours back and three hours from each one of those appointments, that’s not doable.
Bill Gasiamis 19:02
I mean, it’s not doable for most people, let alone somebody who’s got more resources than, say, most stroke survivors. So my idea about pushing back on the suppose that plateau, and having them try to relocate you to make it harder for you is to ask for proof that the person has reached a plateau.
Bill Gasiamis 19:27
Data, you’ve made a decision you’re telling me about it. But what’s that based on? Show me the data, give me the information that you used to conclude that that person has hit a plateau. Now, when somebody hits a plateau, so to speak that’s the time when therapy needs to be upgraded when therapy needs to be taken to the next level. Not a time for therapy to stop because I have met many stroke survivors who tell me that their recovery they are improving years after the stroke. So there is no time to remove services just because somebody made a decision that you need to be cut off.
Patrik Hutzel 20:12
Bill, obviously you’ve had a hemorrhagic stroke, you know, we have any inquiries all the time, hemorrhagic stroke, ischemic stroke, you know, I mean, I know the difference, and most people that come to us by then know the difference as well, do you think there’s a difference in sort of speed of recovery or options for recovery, whether there’s either an ischemic or hemorrhagic stroke?
Bill Gasiamis 20:39
So this is very interesting because what seems to me is that when I had a stroke, in 2012, it wasn’t referred to as a stroke by the medical profession, it was referred to as a brain hemorrhage. And I didn’t understand what that meant, and why was different from a stroke, I had the same neurological problems that an ischemic stroke survivor had.
Bill Gasiamis 21:01
I also had the same neurological problems that a traumatic brain injury survivor had somebody, for example, has had a massive concussion, we all experienced the same physical, and neurological symptoms, and we all had the same type of impact on our daily lives. And we needed to find a way to move forward. And that was the real issue, we didn’t know how to move forward.
Bill Gasiamis 21:27
So, unfortunately, with stroke, every stroke is different. It happens to every individual differently, it happens in a different part of the brain, and it affects a different part of their function. And as a result of that, you can’t compare my stroke to the other person who had a hemorrhagic stroke in the same spot or place, because their brain is wired differently.
Bill Gasiamis 21:51
They have different ages, they have different comorbidities, and they have all these different things. So all strokes are different. However, just because the strokes are different, doesn’t mean the approach needs to be different, the approach needs to be the same, you need to attend to certain things to make sure that you’re giving the best opportunity for the brain to heal.
Bill Gasiamis 22:13
My understanding and the way that I went about my stroke is that I attended to certain things that I hadn’t attended to before, but some of them are obvious, right? One of the things I attended to was food, on the nutrition side, once people are released from the acute phase of recovery from hospitals from ICUs, they need to take care of their nutrition.
Bill Gasiamis 22:36
They need to make sure that they’re not eating foods that are inflammatory and going to cause more inflammation in the brain and therefore increase fatigue levels and increase the time that it takes for people to recover from the brain injury. Some of those foods are very basic. I’m not a nutritionist, so don’t take nutritional advice from me.
Bill Gasiamis 22:59
But these are really simple things. Caffeine can cause irritation, and make fatigue worse, sugar can do that. Smoking can do that. Drinking alcohol can do that. So alcohol 100% needs to be avoided same with sugar.
Bill Gasiamis 23:17
And caffeine needs to be limited. But if people are going through stroke recovery, and they are still drinking alcohol, and they are still smoking, and they are still consuming high amounts of sugar, they’re going to decrease their brain’s capacity to recover. So I was trying to make the right environment to help my brain in its recovery. I didn’t want to make that worse.
Patrik Hutzel 23:43
Bill, you mentioned age in particular. And you mentioned at the time of your first drug, you were 37 years of age, which I consider to be very young. How do you think age has an impact? We have many families coming to us and saying Hey, my 77-year-old mom and my 77-year-old dad had a stroke.
Patrik Hutzel 24:05
They’ve been previously fit and healthy. And now this happens. They’re unresponsive. They’ve been in ICU for two weeks, they’re out of an induced coma and they’re still not responding. How do you consider what’s your take on the age? When does the stroke happen? What’s your take on that? How does it impact the chances of survival and recovery?
Bill Gasiamis 24:28
I think age is important. comorbidities are important the older we get the more risk factors working against us. So that is a very standard logical thing to take into consideration. However, there is a bit of an ageism thing occurring where the medical community will consider somebody of an older age. less necessary to rehabilitate though won’t put the resources into Somebody older.
Bill Gasiamis 25:02
And I’m not sure, specifically why they’re ageist, because we all know, we all going to be older, we’re all going to be in the same situation at some stage, and discriminating against older people, just because supposedly they have less possibility of recovery. Or supposedly they have lists of years ahead of them or something along those lines, is something that you need to be aware of.
Bill Gasiamis 25:25
And I think you need to push back on the possibility that if you’re over the age of 60, or 65, and you feel like they are fast-tracking, you’re out of the hospital or fast-tracking you back to home. And the family is not comfortable with that. And you’re not comfortable with that.
Bill Gasiamis 25:42
Pushback, because I’ve seen it where several people who I’m coaching are above the age of 60, and 65. And they are coming to me saying that I wasn’t offered particular services, because they didn’t see that I could have a full recovery, or recover well enough to justify the costs of rehabilitating me.
Patrik Hutzel 26:06
Well, I can give a very real example, I had an inquiry from a client here in Melbourne, maybe three months now would have been around March this year, who had an 80 or 82-year-old mom go into a hospital into a well-known Hospital in Melbourne, with a stroke with an acute stroke.
Patrik Hutzel 26:26
And the hospital there was telling the family from day one, we’re not going to treat the stroke, the only thing we can offer is palliative care. Unfortunately, the lady passed away within a few days after the diagnosis without having ever been offered proper first-line treatment for the stroke with an ischemic stroke, for example.
Patrik Hutzel 26:50
And this was an ischemic stroke, could include thrombolysis, you know, I’m sure you would be familiar with that, you know, has been refused right? Now, they only found out about our service when it was too late. So we didn’t even have the chance to advocate for her because her thrombolysis needs to be done within a few hours.
Patrik Hutzel 27:13
So it’s certainly something that we are seeing across the board. And the older someone is when they have a stroke, the less likely it is that hospitals will push towards end-of-life care palliative care, or just symptom management, rather than looking for a cure.
Patrik Hutzel 27:32
And in my mind, that is discrimination. Because you know, with your story, yes, you have a higher chance to recover when you’re younger. But that doesn’t mean you don’t have a chance to recover when you’re 77, or even 87, you haven’t even tried.
Bill Gasiamis 27:47
Exactly right. And the thing about it is nobody can predict the future. Not even doctors might have statistics that suggest certain things, they might use a bell curve, and most people might fall in that part of the statistical data. And then there’ll be some outliers. And that’s okay, but they don’t know who you are yet. They don’t know which part of the data you will stick to and fall into.
Bill Gasiamis 28:10
And that’s the part that frustrates me is that they make decisions on people but they don’t know, the person that they’re dealing with, as you know, how their future may unfold. Especially if well, they could probably predict how the future will unfold. If they refuse to support that person, if they refuse to provide medical care, that will predict the way that person’s future will unfold.
Bill Gasiamis 28:35
But if you do provide the medical care, there’s a good chance that you’ll improve the person’s outcomes, you’ll get them a result, and they will be able to rehabilitate themselves to a certain point. And yes, in some cases, if the damage is too large, and the person is in their 70s, or the 80s, yes, they may not have enough time ahead of them to achieve the type of recovery that you would like.
Bill Gasiamis 29:02
But that’s a different situation, that’s a situation where perhaps scans, etc., do show certain levels of impairment that you don’t have enough time in front of you to rehabilitate. Now, even then, it doesn’t mean that services should be discontinued because every person is a loved one. Every person is cared for every person is required and necessary to be around. And I don’t believe that we should just take the word of doctors for the gospel and not question it.
Patrik Hutzel 29:44
I could not agree more with you Bill because every life is worth living and with the work that we are doing one thing that we are hearing all the time and I’m sure that our viewers and listeners will concur with that. The doctors always say well, even if your mum or dad or whoever it is will survive, they won’t have any quality of life.
Patrik Hutzel 30:05
Well, what is the quality of life? That’s a perception. It’s not more than that, you know, what what is acceptable for you is quality of life may not be acceptable for me as quality of life and vice versa. So it’s a very subjective measure. It’s not an objective measure, it can’t be measured objectively.
Patrik Hutzel 30:24
The other thing that I think is important to mention here, you know, the medical community looks at that, quote, unquote, stroke. Whereas the family looks at it, well, this is my mum, this is my dad, they lived a full life until now, and they’ve overcome challenges before, I will not have that stroke, stop my mum or my dad from overcoming another challenge.
Patrik Hutzel 30:48
But it’s a very, very isolated view that often hospitals and the medical community take looking at a diagnosis without looking at the whole person at the whole family. You know, what have those people overcome in the past, and so forth? What’s your take on that Bill?
Bill Gasiamis 31:09
My take is, you know, your family member better than anybody. And, the doctors are there to care, they are there to provide support and services, etc. But they are limited to what they can do by governments, by funding by budgets, etc. And they’re just trying to meet all the criteria. And then they’re trying to also meet the regulations and the bureaucratic criteria that they need to meet.
Bill Gasiamis 31:41
So they are kind of stuck in the middle. And most doctors, when you push back, do kind of what I’m not sure if the word is like, accept you’re pushing back, but they do. Well, they will reconsider, they will negotiate, and there will be a path forward for the person who pushes back on a doctor’s suggestion or decision.
Bill Gasiamis 32:04
The result is that most medical facilities cannot decide on the path forward of a person without the family members or the people who are advocating for that person who’s in the hospital without their consent.
Bill Gasiamis 32:21
So it’s really important that, if you can’t have the conversations yourself you do call somebody else into the conversation on your behalf. Because it’s an emotional time, you’re less likely to make the right decisions, perhaps you won’t make rational decisions.
Bill Gasiamis 32:42
And when you’re confronted with a supposed medical expert like a doctor, it is common for us to take their word for the gospel because we elevate them to positions of power and authority. After all, they deserve it to an extent.
Bill Gasiamis 33:00
But because of that, we feel sometimes that we can’t question their authority. And I believe that you must question their authority in my case. And if we can do it in a way that’s nice and gentle and compassionate for them because they are probably stuck between a rock and a hard place. In my case, I sacked my team of doctors, after my first stroke.
Bill Gasiamis 33:26
And I left the hospital that I was at, and went to another hospital because I did not feel that they had my best interests at heart. And I went and got a second opinion. When I got a second opinion, I felt that the people I was communicating with about my condition did have my best interests at heart, and I was going to receive a better level of care. So that’s exactly what I did. And I think that is something that caregivers and loved ones of stroke survivors can do to get a second opinion.
Patrik Hutzel 34:00
It’s such a critical point, Bill because that’s what we are doing all the time here. You know, we have families coming to us whether it’s, you know, after a stroke or any other condition, they say, well, the hospital is telling us tomorrow, they’re going to stop treatment.
Patrik Hutzel 34:18
And I say to them, okay, so will you just take this for the gospel, Oh but that’s what they said. And I said, Well, if they asked you to jump off a bridge tomorrow, would you jump off a bridge? Oh, no, we wouldn’t do that. So why would you? Why would you just go along to get along? You know, this is a once in a lifetime. situation. You can’t get it wrong.
Patrik Hutzel 34:22
You know, hospitals and doctors are extremely good at pretending they’re operating in a vacuum. Well, end-of-life and discharges to other hospitals and whatnot. It does not happen in a vacuum happens in a framework Right? But like you said, families or patients, put doctors and nurses onto a pedestal, you know what I refer to as perceived authority.
Patrik Hutzel 35:11
And of course, there is a level of authority. Of course, there is. But that authority needs to be used to the benefit of a patient and the family doesn’t need to be used to the benefit of the system. That’s my take. And we wouldn’t be in business with an intensive care hotline if there wasn’t a need for consulting and advocacy for people in need. You know, the minute our families bring an expert in, that can help advocate for them, the dynamics change and change in one phone call.
Bill Gasiamis 35:46
They immediately change. Yeah, I found the same thing, I found that simply, for somebody to go to my website and download seven questions to ask your doctor after a stroke, it’s a free PDF that they can get from my website at recoveryafterstroke.com.
Bill Gasiamis 36:05
That is enough to begin a conversation with a medical professional that makes the playing field a little more even. It makes the medical professional engage in the conversation, rather than just give information about this is what’s going to happen, It makes them respond to the desires, the needs, the lack of clarity, lack of understanding that the caregivers or the stroke patient has.
Bill Gasiamis 36:05
Now when somebody is a stroke patient, I don’t have the cognitive ability to make medical decisions. Because I’ve had a stroke, my brain is injured. My wife had never dealt with anyone who had had a stroke before she’d never met anyone seen anyone. So she was and she’s not a medical person. So she was navigating this blind.
Bill Gasiamis 36:05
Now, if we had a tool that I could take to a meeting with my doctor, that would have made her life a lot easier. So that’s what that tool is, it’s a tool to start a conversation in a way that perhaps a nonmedical person like me, wouldn’t have been able to previously ask to start a conversation with a medical person about, I don’t have the words, I don’t know the language.
Bill Gasiamis 36:05
I don’t know the abbreviations. I don’t know any of that stuff. It’s overwhelming. So if you can just find a way to generate a normal conversation and share your needs and your requirements for your loved ones’ care, then that conversation takes a completely different path than it being one wire coming from the medical professional, and you’re just passively listening to it.
Intro 37:47
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. How long will it take to recover? Will I recover? What things should I avoid in case I make matters worse, Doctors will explain things that, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 38:12
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recovery after stroke.com where you can download a guide that will help you it’s called seven questions to ask your doctor about your Stroke.
Intro 38:31
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, They’ll not only help you better understand your condition, but they’ll also help you take a more active role in your recovery. Head to the website. Now, recoverafterstroke.com and download the guide. It’s free.
Patrik Hutzel 38:51
One thing that I keep saying to my audience over and over again, and I believe it applies to your audience is that the biggest challenge for them is that they don’t know what they don’t know. They don’t know what to look for. They don’t know what questions to ask. They don’t know their rights, and they don’t know how to manage doctors and nurses in those situations.
Patrik Hutzel 39:15
I have no idea. And I do believe the very same applies to your audience. You know, they don’t even know where to start and you putting out this pamphlet or this white paper, whatever you want to call it is a starting point. You know, I have a similar white paper on my website, the Instant Impact Report.
Patrik Hutzel 39:32
It’s a guide for families in intensive care very similar to Okay, Where Do You Even Start when You are Completely Overwhelmed by What’s Happening All Around You You know, I can only recommend it for everyone who is faced with a stroke, you know, to go to Bill’s website at what’s your website again Bill?
Bill Gasiamis 39:53
recoveryafterstroke.com. And one of the things I’d like to add, Patrik is that asking your doctor The question for example, what else do I need to do for my loved one, other than the services that you’re providing? Might be a good way to start the conversation and get you thinking about what else can be done. Who else can I speak to?
Bill Gasiamis 40:15
What other tests do we need to do those types of things? And one of the main things that I think was somebody who’s had a stroke or a neurological injury, traumatic brain injury is to get an evaluation from a neuropsychologist, so it is a psychologist. So it’s not like psychological counseling. It is a psychologist who will assess the deficits that that person who has experienced the stroke is experiencing and must recover from.
Bill Gasiamis 40:46
And with a neuropsychologist’s report, you will be able to direct the resources of the recovery much more efficiently because you will know specifically where in the brain that injury is, and what rehabilitation needs to be. What steps towards rehabilitation need to be taken? So asking simply for a neurological assessment or neuropsychologist assessment will change the way that the recovery, resources are applied to the person’s recovery. Rather than being haphazard, they can be more focused and more targeted.
Bill Gasiamis 41:25
Can you see the comment from Laurie, can you see that?
Patrik Hutzel 41:27
I can’t.
Patrik Hutzel 41:28
I’ll read out the comment from Laurie here who says I’m four years post hemorrhagic stroke and never recovered. Also, I consider myself a stroke victim, not a survivor.
Bill Gasiamis 41:45
Well, that’s a really important distinction to make. So if you’re a stroke victim, you’re in a situation where you’re allowing what’s happened to you, to impact you negatively, and only in a negative way. If you’re a stroke survivor, you’ve already overcome one thing, you didn’t die from the stroke. So we have already overcome a very big challenge.
Bill Gasiamis 42:12
And as a survivor, you are being guided to help you look for solutions to problems, because that’s what we generally need to be. Stroke creates many, many, many problems. If you always focus on problems, you will get more problems. If you focus on solutions to problems, you will get more solutions.
Bill Gasiamis 42:36
As a survivor, a survivor needs to focus on solutions, A victim will not be able to change their mindset to focus on solutions, they will focus on all the reasons why this happened to them. What did I do wrong in a past life? Why has God punished me? None of that is useful for improving your outcomes for a good recovery. So maybe, hopefully, that is a way now that she’s heard the term survivor. Maybe that’s a way to just change the conversation in their head about how to go forward.
Patrik Hutzel 43:13
Already. I think that’s that’s Laurie. Thank you for the comments, Laurie. But I also want to acknowledge you know, what Bill said, but like Bill said, you know, we’re already changing the conversation here. Yes, up until today, you’ve considered yourself a stroke victim. But now you are already seeing that you can look at your situation differently, that you are a survivor. And change the conversation around stroke, change your mindset around stroke. Bill, are you familiar with Dr. Joe Dispenza, as well?
Bill Gasiamis 43:44
I’m familiar, but not intimately.
Patrik Hutzel 43:48
Right, right. Look, I’m not familiar with it intimately either, but I have watched some of his videos on YouTube. Laurie, I would also like to point you to Bill’s work. I would also like to point you to Dr. Joe Dispenza’s work, just type into Google Dr. Joe Dispenza.
Patrik Hutzel 44:05
He I believe is doing some groundbreaking work with helping people from all walks of life with overcoming their limiting mindsets, but also their limiting condition. So I encourage you to look at Dr. Joe Dispenza’s work as well. Bill, coming to your book, tell us about your upcoming book. You know what’s in the book, what do people get? Why have you written it?
Bill Gasiamis 44:32
Okay, it’s a strange title. I said that at the beginning, right? The long title is The Unexpected Way That The Stroke Became The Best Thing That Happened To Me. That wasn’t the case at the beginning of what happened in the podcast while I was speaking to people and interviewing people about their stroke journey.
Bill Gasiamis 44:53
I found myself a couple of times accidentally slipping out of my mouth saying, “I think this is the best thing that happened to me” and then I got curious as to why. Why is it the best thing that happened to me? I’m living with daily deficits, my balance isn’t the best, and my numbness is on my entire left side.
Bill Gasiamis 45:12
I’m not as physically active as I used to be. I have pain, I have muscle stiffness, I have cramps, I have all these things that I never had before. And yet, I still think that stroke was the best thing that happened to me the reason is, is that I’ve had a very huge personal development experience where I’ve grown personally from this situation.
Bill Gasiamis 45:35
And one of the ways that I grew was my mindset was all about finding solutions, you know, recovery, recovery, more, not problems, just solutions, just solutions. So I had an amazing mindset. And then, when I didn’t have answers to some of those questions, I reached out to other stroke survivors. And they filled me in on some of the things that I didn’t know that I needed to know, that helped me with my recovery.
Bill Gasiamis 46:04
One of those things was my take on nutrition, what I thought was healthy, which wasn’t. So in that, I then found that there is a community of people that for the first time in my life, truly, deeply understand me, or the stroke survivors who have had a stroke, really relate to me, and understand what I’m going through. And that was a unique and rare thing, I’d never come across people who related to me so deeply, and I relate it to them.
Bill Gasiamis 46:31
And I thought that was amazing. So I grew this group of people that deeply understood me. In that time, I discovered the benefits of improving my sleep. I then discovered the benefits of changing my nutrition. I then discovered the benefits of exercise, even though I wasn’t able to exercise the same way as before, any type of exercise is beneficial.
Bill Gasiamis 46:56
And then I discovered that I needed to do something to help other people as I was being helped, I found that helping other people was helping me and helping them. So I discovered that this might be one of my goals, I might have discovered my purpose in that the podcast was begun so that I can connect with people who can help me but then it’s helping them.
Bill Gasiamis 47:22
And then they are telling me that strikes the best thing that happened to them because of how they’ve had personal growth. I’m saying the same thing. And then I wanted to know what was what did we have in common. How did we all get there to this point where we can say a stroke is the best thing that happened to us? And it’s not what I expected. But what came from it was 10 things that these people had in common.
Bill Gasiamis 47:44
And, and many people say that strokes are the best thing that happened to them. Many people say that cancer is the best thing that happened to them and the heart attack they had was the best thing that happened to them and all these strange people say that their medical condition was the best thing that happened to them.
Bill Gasiamis 47:58
So anyway, the 10 things they had in common briefly, or that they had a recovery mindset. They had an emotional intelligence upgrade. So they connected to their heart, and they found a way to mend their relationships and improve their relationships. They made access, they access the gut and the gut-brain by taking steps to upgrade their identity and choosing to label themselves in a different way than I’m just somebody who goes to work. I’m a father, I raised children, and they enhanced their identity.
Bill Gasiamis 48:36
And they became more than just the labels that have given themselves. They improve their sleep, they improve their nutrition, and they become more physical. They started a meditation practice to go inside, focus on their breathing, calm themselves, and learn about what’s happening inside their body. They discovered their purpose by doing things for other people and supporting other people. And at the same time, they found a supportive community that deeply understood them.
Bill Gasiamis 49:03
Now those 10 things that they did became the chapters. In my book, I discuss a story at the beginning of each chapter of one of the people who I interviewed for the book. And then we go into emotional intelligence, for example, would describe what it is a little bit of scientific history and background into that, how it applies to life, and how you can improve and upgrade it.
Bill Gasiamis 49:26
So it’s like a how-to do the steps to get to the point that strike is the best thing that happened. And I’m not saying for one minute, that it’s the best medical thing that’s ever happened. I’m not saying that at all. I’m saying it’s a possibility for post-traumatic growth, and post-traumatic learning, and, and just a different way of seeing things in life. And that’s basically what I experienced.
Patrik Hutzel 49:52
That’s amazing Bill. And I think that’s also it’s amazing and it’s very encouraging because you know if you can look thank God, I’ve been pretty healthy all my life, you know, thank God for that. But any challenge that has been thrown at me on a personal or professional level and you can overcome it is the best thing that can happen to you.
Patrik Hutzel 50:13
It is because you can show you can overcome it, nothing really can faze you, you know, and I can see how you would take that perspective now. But it also takes a lot of courage, I believe, to look at it that way, and to share that with the world. And I hope that anyone who’s watching this or listening to this, you know, can overcome their challenge as well. And I know that Bill can help you with that, Bill’s book Bill’s podcast, you know, he’s done it. That means you can do it. You know, there’s no question about that.
Bill Gasiamis 50:54
I believe so. Look, in the podcast episode that is going out on Monday. So tomorrow, I interviewed Clara Woods, she’s an amazing young lady who experienced a stroke in her mother’s womb before she was born. And now Clara is 17. She has become an artist. She has exhibited in the United Kingdom, in Florence, Italy, and Japan, and now is attempting to set up an exhibition in New York.
Bill Gasiamis 51:27
Now, these are a family of people who have had to live through a perinatal stroke and the impact that that has caused to their daughter. As a result of that Clara is not verbal, she cannot speak but she understands three languages. She has become an artist, she has had an exhibition. And she is not meant to be doing any of those things.
Bill Gasiamis 51:52
Doctors told the family that she was going to be in a vegetative state. So I would encourage anyone listening to just go to the recovery after stroke podcast, and listen to any one of those 265 episodes, especially Clara’s one tomorrow, because it’s my favorite episode so far. And just get a little bit of an understanding of how thinking differently can completely and change your life for the better and improve your life, even after a stroke.
Patrik Hutzel 52:30
If I had $1, for every client that we worked with, over the years where, you know, ICU teams have told them oh they won’t survive, they’ll be in a vegetative state for the rest of their lives. And the minute you challenge this, or you keep going regardless, things will change over time. Now I would you know, there’s always patients that don’t survive, but it’s the minority.
Patrik Hutzel 52:52
You know, it’s the minority. You and I wouldn’t be here today if our ancestors hadn’t overcome many challenges during times when there weren’t even hospitals. You and I wouldn’t be having this conversation today if our ancestors hadn’t been incredibly resilient, without all the bells and whistles that we have today.
Bill Gasiamis 53:17
Indeed, we are living in the best times ever, If you’re going to have a stroke, there have never been more resources to support your recovery, you just have to look for them. And you have to know where to find them. Hopefully, what I’m doing is supplying some of those resources and helping people find the resources that they need.
Bill Gasiamis 53:37
And I’m a bit of a connector. It’s what I do. So I live in Australia, in Melbourne, but I have connected people in New York, who have had a stroke and need to talk to another stroke survivor. I mean, it’s weird that I’m doing that from Australia. But if you know who to ask, you’ll be able to find people to support you.
Patrik Hutzel 53:55
Bill. You know what I’m I believe that the viewer said we’re having a probably mainly in the US that the viewers are alive here now, probably mainly in the US. I mean, I know you are talking to people in the US, I’m talking to people in the US every day. So what we’re doing here, even though we’re both in Melbourne, what we’re doing here is addressing a worldwide issue.
Bill Gasiamis 54:19
You nailed it, Patrik. That’s what I found one of the misconceptions that I had before I started this journey was that we’re all different and that different things happen. And we react differently. We have different needs and different requirements. X, we’re all pretty much the same. Everyone wants to be well healthy, and looked after they need resources to encourage them to recover. And they all need community.
Bill Gasiamis 54:44
They all need support. Everyone is the same no matter which community you come from, what your religious background is, or what your ethnicity is, it doesn’t make a difference. everybody’s the same. So I’ve been pleasantly surprised by that. And I love the possibility that my upbringing in Melbourne is going to be good enough to support somebody who’s going through stroke recovery in Canada, in the United States, in New Zealand, in Mexico, in Italy, in Dubai, wherever they are.
Bill Gasiamis 55:19
It makes no difference so, yeah, and what that hopefully does is make people not feel like they’re going through it alone. I’m the only one that this has happened to. And nobody knows what it’s like. You’re not the only one. And absolutely, people know what it’s like, and they relate to you.
Patrik Hutzel 55:39
Absolutely. And look, just by the comment from Laurie, you know, obviously, by what we’ve discussed today, Laurie could already relate to it. And, Laurie, I hope that just by you coming on to this to this show, you know, hopefully, we can change your perspective. In your situation going forward, you will be a survivor, not a victim, you now have the tools, and resources at your disposal.
Patrik Hutzel 56:05
What to do next. You know, change, change your outlook trends change your perspective. Bill, we got to wrap this up in a minute. We do have time for one more quick question. We can quickly get to that if anyone wants to type in another question. But Bill, where can they find your new book, if people are interested?
Bill Gasiamis 56:25
So if they go to recovery after strike.com, that’s going to be the best place to get updates on the stage of my book. It’s not out yet it’s been edited. And now we’re doing the final layout. And we’re just putting it together and making a book for the first time. I’m not sure how long that takes, my editor is in charge of that and my publisher, so that’ll happen in a little while.
Bill Gasiamis 56:45
But if they just go to recoveryafterstroke.com and they subscribe to the podcast on iTunes or Spotify or Stitcher or wherever they get their podcasts from, I’ll update people regularly. And soon, but not yet, I will release an opportunity for people to download the first chapter of the book for free. So they’re just going to keep coming back to recoveryafterstroke.com and checking in there, just so that they can be notified as soon as that’s a possibility.
Patrik Hutzel 57:16
That’s amazing. Thank you so much, Bill. Appreciate you coming on to the show and sharing all of your wisdom with my audience.
Bill Gasiamis 57:26
My pleasure.
Patrik Hutzel 57:28
Great, great. So thanks, everyone for coming onto the show and for watching the replay. Now if you have a loved one in intensive care, go to intensivecarehotline.com. Call us at one of the numbers at the top of our website, or simply send us an email to support us at intensivecarehotline.com with your questions.
Patrik Hutzel 57:48
Also, have a look at our membership for families in intensive care at intensivecaresupport.org. There you have access to me and my team 24 hours a day in the membership area and via email. And we answer all questions intensive care related.
Patrik Hutzel 58:03
I also offer one-on-one consulting and advocacy for families in intensive care over the phone, Zoom, Skype, WhatsApp, or whichever medium works best for you. I also talk to doctors and nurses directly if that’s what you want. I also represent you in family meetings with intensive care teams. So that you have someone on your team that speaks the medical language.
Bill 58:24
Thank you so much for joining us on today’s episode. I hope you liked this episode, It was something different and gave you an insight into my thoughts on some of the topics that are seriously necessary for you guys to consider after a stroke. To learn more about my guests, including links to their social media and other pages, and to download a full transcript of the entire interview please go to recoveryafterstroke.com/episodes.
Bill 58:51
If you’d like to support this podcast, the best way to do it is to leave a five-star review and a few words about what the show means to you on iTunes and Spotify. If you are watching on YouTube, comment below the video like this episode and to get notifications of future episodes, subscribe to the show on the platform of your choice. Thank you again for being here and listening. I truly appreciate you see you on the next episode.
Intro 59:15
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals’ opinions and treatments. Protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.
Intro 59:32
All content on this website at any linked blog, podcast, or video material controlled by this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis. The content is intended to complement your medical treatment and support healing.
Intro 59:49
It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your injuries, circumstances, or health Both objectives do not use our content as a standalone resource to diagnose, treat, cure, or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.
Intro 59:49
Never delay seeking advice or disregard the advice of a medical professional, your doctor, or your rehabilitation program based on our content. If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional. If you are experiencing a health emergency or think you might be, call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.
Intro 1:00:34
Medical information changes constantly. While we aim to provide current quality information in our content. We do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency, or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with the links we provide however third-party links from our website are followed at your own risk and we are not responsible for any information you find there.
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Shamarah Gianetto was 46 and a mom of a 5-year-old when she experienced a Pontine Ischemic Stroke. Listen to her story here.
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After his second covid 19 vaccination Sherif Aboutouk experienced an Ischaemic Stroke that amongst other things has caused vision problems.
Highlights:
00:44 Introduction
02:55 The first signs of Ischemic Stroke
08:45 COVID vaccine might have caused the ischaemic stroke
17:18 No one talks about covid-19 anymore
20:54 About stroke recovery being google proof
23:06 Why stroke podcasts are so important
34:03 Stroke is the best thing that ever happened
39:49 Things that matter after the stroke
51:27 Learning how to use the heart after the stroke
57:37 The emotional recovery is the most important recovery
1:05:57 The power of apology
1:14:27 Experiencing the deficits differently
1:22:22 The invisible disability
1:31:52 The lessons Sherif Aboutouk learned from stroke
Ischaemic Stroke in Young Adults: Recognizing the Signs and Seeking Prompt Medical AttentionStroke is a medical emergency that can happen to anyone, at any age. However, when we think of stroke, we often associate it with older adults. But did you know that stroke can also affect young adults? In fact, ischaemic stroke, a type of stroke caused by a blood clot in the brain, is becoming increasingly common in younger people.
This is a worrying trend, as many young adults may not recognize the signs of stroke or seek medical attention promptly, leading to long-term disability or even death. In this article, we will explore the signs and symptoms of ischaemic stroke in young adults and the importance of seeking prompt medical attention.
We will also discuss the risk factors and preventative measures that can help reduce the incidence of stroke in younger individuals. So, if you or someone you know is a young adult, it is crucial to stay informed and aware of the signs of stroke to ensure early detection and intervention.
What is an ischaemic stroke?An ischaemic stroke occurs when a blood clot blocks a blood vessel in the brain, reducing blood flow and oxygen supply to the brain. This can result in brain damage, disability, or even death. ischaemic stroke is the most common type of stroke, accounting for approximately 87% of all stroke cases, according to the American Stroke Association. As we get older, our risk of having a stroke increases. However, younger adults can also have a stroke, and ischaemic stroke is becoming more prevalent in this group.
Prevalence of ischaemic strokes in young adultsAlthough stroke is more common in older adults, the incidence of ischaemic stroke in young adults is on the rise. A study published in JAMA Neurology in 2019 found that the incidence of stroke in young adults increased from 12.9% to 18.6% between 2003 and 2015. Ischaemic stroke accounted for 85% of all strokes in this age group. The reasons for the increase in stroke incidence in young adults are not entirely clear. However, some experts suggest that lifestyle factors, such as poor diet, lack of exercise, and high stress levels, may play a role.
Risk factors for ischaemic strokes in young adultsSeveral risk factors can increase the likelihood of having an ischaemic stroke in young adults. These include:
- High blood pressure
High blood pressure, or hypertension, is a significant risk factor for stroke. It can damage the blood vessels in the brain, making them more likely to rupture or form clots.
- Smoking
Smoking increases the risk of stroke by damaging blood vessels and promoting the formation of blood clots.
- Diabetes
Diabetes can contribute to the development of atherosclerosis, a condition in which plaques build up in the arteries, making them more prone to clots.
- Obesity
Obesity increases the risk of stroke by promoting the development of other risk factors, such as high blood pressure, diabetes, and high cholesterol.
- Family History
Having a family history of stroke or certain genetic conditions, such as sickle cell disease, can increase the risk of stroke.
Other risk factors for stroke include high cholesterol, atrial fibrillation (an irregular heartbeat), and drug abuse.
Signs and symptoms of an ischaemic strokeRecognizing the signs and symptoms of an ischaemic stroke is crucial for prompt medical attention. The faster a stroke is detected and treated, the better the chances of recovery. The most common signs and symptoms of an ischaemic stroke include:
- Sudden weakness or numbness on one side of the body. This can affect the face, arm, or leg and may cause difficulty speaking or understanding speech.
- Sudden vision changes. This can include blurred vision, double vision, or loss of vision in one or both eyes.
- Sudden severe headache. This can be accompanied by nausea, vomiting, or dizziness.
- Difficulty walking or loss of balance. This can cause a sudden fall or difficulty standing up.
- Confusion or difficulty understanding. This can cause sudden memory loss or difficulty speaking.
It is essential to note that not all symptoms occur in every case of stroke. If you or someone you know experiences any of these symptoms, seek medical attention immediately.
Importance of seeking prompt medical attentionSeeking prompt medical attention is crucial for the best possible outcome after an ischaemic stroke. Time is of the essence when it comes to stroke treatment. The longer the brain goes without oxygen, the greater the risk of permanent brain damage. Treatment for an ischaemic stroke may include medication to dissolve the clot, surgery to remove the clot, or rehabilitation to help regain lost function. However, these treatments are most effective when administered within the first few hours after the onset of symptoms. Delaying medical attention can result in long-term disability or even death.
Diagnosis and treatment of ischaemic strokesDiagnosis of an ischaemic stroke typically involves a physical exam, imaging tests, and blood tests. Imaging tests, such as a CT scan or MRI, can help determine the location and severity of the stroke. Blood tests can help identify risk factors for stroke, such as high cholesterol or diabetes.
Treatment for ischaemic stroke may involve medication, surgery, or rehabilitation, depending on the severity and location of the stroke. Medications, such as tissue plasminogen activator (tPA), can dissolve blood clots and improve blood flow to the brain. Surgery, such as a thrombectomy, can remove the clot from the blood vessel. Rehabilitation can help regain lost function and improve quality of life after a stroke.
Rehabilitation and recovery after an ischaemic strokeRehabilitation and recovery after an ischaemic stroke can be a long and challenging process. The goal of rehabilitation is to help individuals regain lost function and improve their quality of life. Rehabilitation may involve physical therapy, occupational therapy, speech therapy, or all three. Physical therapy can help improve strength, balance, and coordination. Occupational therapy can help individuals regain the ability to perform daily tasks, such as dressing or eating. Speech therapy can help improve communication skills.
Recovery after an ischaemic stroke can take weeks, months, or even years, depending on the severity of the stroke and the individual’s overall health. Some individuals may experience long-term disability or cognitive impairments after a stroke. However, with proper medical attention and rehabilitation, many individuals can regain lost function and live full and productive lives.
Prevention of future strokesPreventing future strokes is essential for individuals who have had an ischaemic stroke. Prevention may involve lifestyle changes, such as quitting smoking, losing weight, or exercising regularly. Medications, such as anticoagulants or antiplatelet drugs, may also be prescribed to reduce the risk of future strokes. Managing underlying medical conditions, such as high blood pressure or diabetes, is also crucial for stroke prevention.
ConclusionIschaemic stroke is a medical emergency that can happen to anyone, regardless of age. However, the incidence of stroke in young adults is on the rise, and many individuals may not recognize the signs or seek medical attention promptly. Recognizing the signs and symptoms of an ischaemic stroke and seeking prompt medical attention is crucial for the best possible outcome.
Risk factors for stroke can be managed through lifestyle changes and proper medical attention. Rehabilitation and recovery after a stroke can be challenging but can lead to significant improvements in function and quality of life. Preventing future strokes is crucial for individuals who have had an ischaemic stroke. By staying informed and aware of stroke risks and signs, individuals can take steps to reduce their risk of stroke and improve their overall health and well-being.
Transcript:
Sherif Aboutouk 0:00
I started listening to you three months ago. And I can tell you hand on heart. I only listen now to your podcast and I’ve probably gone through 30 episodes or so. And the amount of knowledge and hope that I have gained from that is honestly a hundred times more than the experience I’ll have in hospital.
Intro 0:31
This is the recovery after stroke podcast. With Bill Gasiamis, helping you navigate recovery after stroke.
Introduction – Sherif AboutoukBill Gasiamis 0:44
Hello, and welcome to episode 253 of the recovery after stroke podcast. My guest experienced an ischemic stroke age just 34 Not long after being injected with a second COVID-19 vaccination at the height of the COVID 19 pandemic. Sherif Aboutouk, welcome to the podcast.
Sherif Aboutouk 1:07
Thank you very much.
Bill Gasiamis 1:10
It’s my pleasure, man. Thank you for being here so late in the evening over there in the United Kingdom. Tell me a little bit about what happened to you.
Sherif Aboutouk 1:21
So it started with my second dose of the vaccine. So I had my second dose of my Pfizer vaccine, the end of July 2021. And I experienced afterwards, four episodes in four different weeks of numbness in different parts of my body.
Sherif Aboutouk 1:49
The latest one I had was by mid August, I remember going it was a Friday. I’ll never forget that day and I was speaking to a colleague, I needed to do something and I said look, I’ve had these episodes of numbness and I really need to go to emergency.
Sherif Aboutouk 2:08
And I went to the bathroom. And as I was there all of a sudden I lost power and control in my left leg. And I had to sit on the floor and I was just a little bit scared and didn’t know what to do.
Sherif Aboutouk 2:27
I live by myself and I just thought wow, by then it was fine. I live in central part of London of very close to St. Mary’s Hospital in Paddington. It’s literally five minute walk. And I went there, I remember chatting to the doctor I used to do a lot of triathlons and cycling.
The first signs of ischemic strokeSherif Aboutouk 2:55
I remember she saying “oh me too la la la” and we had this conversation had very high blood pressure. I told her about my three episodes. And one of them I have blurry vision.
Sherif Aboutouk 3:09
And I said look, I completely lost power in this leg and she’s like, Oh, no, you’re too young, it’s okay. I learned later is that I have a TIA I have 2 TIAs before my stroke. And normally, they could have just scanned my head and found it would have been an aspirin should have been okay, but then was left to go home.
Sherif Aboutouk 3:38
And then I flew out to Majorca on the 25th 26th of August to meet my mom there because it was locked down, my mom lives in Egypt. And Egypt was on the Red List to come to England.
Sherif Aboutouk 3:58
So she was visiting her sister there. So I thought right, I’m gonna go there spend a couple of days of cycling. And I just didn’t think too much of it at all. I just thought right, you know, it’s okay and then when I come back, I’m going to see a neurologist.
Sherif Aboutouk 4:17
And on the 25th it was a Monday, absolutely fine, I was swimming every day. And last day was Wednesday, I went for long cycle ride. And then I picked my mom from the airport, went for dinner, then went back.
Sherif Aboutouk 4:35
I was in the house and I slept and I woke up and I have a habit of waking up during the night which is a really bad one and I was scrolling through my phone and I’ll never forget that I was looking at a message I just couldn’t read it properly.
Sherif Aboutouk 4:56
Which is literally what I have now. But then you know, that’s weird and I have this really bad pain on that side of my head, which I understand is not necessarily a symptom for stroke. So that was a Thursday morning. My mom’s like, oh, let’s go out, it’s my first day.
Sherif Aboutouk 5:19
I was like, look, you know, you go see my aunt and I’m just going to, you know, sleep it off, because I’m not feeling well. I slept off on Thursday, and Friday came out, and my aunt was in the house. And I remember asking my mom, Oh, can you just give me the phone?
Sherif Aboutouk 5:36
And she gave me the phone. I was like, Oh, that’s my wallet. And I just was very confused. And also the vision part, I wasn’t seeing very well. And then she said, look, I’m gonna take you to the eye hospital.
Sherif Aboutouk 5:51
Because that was the most significant impact I had. And then on the way to hospital, I said, Look, I think I need to go to a proper hospital, not just an eye one and went there. They scan my head. They said you had a large ischemic stroke in that part of the brain and you’ll have to stay in and that’s it.
Bill Gasiamis 6:26
Was that the first time you had was scanned? So you went to St. Mary’s Hospital? And they didn’t go down that route?
Sherif Aboutouk 6:37
No, they didn’t which is quite frustrating now knowing that it could have been saved.
Bill Gasiamis 6:45
Then you’ve gone through this whole process, you’re feeling numb, and you had the four incidence of numbness over four weeks? And was it immediately after you had the vaccination or was it a little time later? When did you feel it kind of started to be noticeable this numbness?
Sherif Aboutouk 7:11
So I had the vaccine on the 21st of July and I think there was the London triathlon on the next weekend and I normally would drive to full plate, do a few laps of open water swimming and the first episode I remember because was after a swim.
Sherif Aboutouk 7:35
I literally finished the swim got in the car and went to clean the car but and you know how you kind of collect all the rubbish in your hand so you can put it in the bin and then I got up on I remember just couldn’t feel my hand I just thought I swam too much.
Sherif Aboutouk 7:51
That’s literally what I thought of like calling my friend telling him about it and calling my mom “oh maybe see the GP” but I didn’t think much about it was literally a five minute and then it comes back.
Sherif Aboutouk 8:03
That was the first episode. The second episode was the day after the triathlon so that’s a week after and again I just defined it that’s maybe like just me having a you know, after the triathlon I’m not feeling too well so I didn’t think much of it.
Sherif Aboutouk 8:25
The third one is when I decided right this is not okay, I need to go to NE that was two days or three days before I go there to NE, that the worst one happened to me was when I was in the bathroom. That’s Friday right before I go.
COVID vaccine might have caused the ischaemic strokeBill Gasiamis 8:45
Yeah. And you mentioned the vaccine, do you feel like a significant here? Has it played a role in this outcome?
Sherif Aboutouk 8:57
Look, I’m not a conspiracist, and you know, I volunteered to take the vaccine because I thought it was the right thing to do. But now with all the research coming out, especially this year about how there are certain amount of people that can get blood clots as a result, I have no history, medical history of any sort of issues beforehand.
Sherif Aboutouk 9:26
Obviously, you can not be 100% Sure. I just never had these episodes until I had the second dose. I could be obviously mistaken. But that’s the only thing that I can put my hands on and say right this is the only change I had before the stroke.
Bill Gasiamis 9:45
But that’s what they’re hanging their hat on the hanging their hat on or you’ll never really know. It’s such a bullshit situation to find ourselves in many months after. Most of the people being forced to take a vaccine that was unproven, that was very new, etc.
Bill Gasiamis 10:05
And you heard all the benefits for it, and all the reasons for it and all that kind of stuff. And you thought, Okay, well, you know, I’m saving humanity if I take this vaccine, but then who’s saving the people who have been adversely affected by the vaccine? And how are they going to go about explaining it, and all we’re getting is the washing of the hands.
Bill Gasiamis 10:24
And then they’re leaving people like you in a situation where you’ve got to work it out yourself, and it’s so terrible. That’s the part that kind of frustrates me is that. Clearly, there’s some people that are affected by it.
Bill Gasiamis 10:35
And those people should be treated a little better, even if we don’t know, even if it’s not certain, even if we’ll never really know, well, why don’t we just look at the coincidence of the timing of the two incidences? That one being the vaccine and one being the event, the health event? And going well? Why don’t we put some money into helping these people like we put money into helping everyone else from dying from COVID?
Bill Gasiamis 11:04
The one and we put some money into helping the people who have been adversely affected? I’ve had two shots of the vaccine, and I haven’t been adversely affected. And I took it unwillingly. But I took it because they weren’t going to find us $100,000 If we got caught at work without a vaccine.
Bill Gasiamis 11:24
And when you haven’t worked for two years, and somebody’s saying to you, you can risk a $100,000 fine, I haven’t got $100,000 to pay to the government. So I can go and work. I think it’s ridiculous, right? But it’s but what’s interesting is, it’s a very, it’s one of those topics that’s become very, you’re either on one side, or you’re on the other side, there’s no middle ground.
Bill Gasiamis 11:48
And I think that there’s no middle ground, is the way that they avoid supporting people who may have been affected by a vaccination that they’ve taken, it’s a way of washing their hands. So they divide and conquer, you’re either with us or you’re against us. Even if you’ve had the vaccine, and it did affect you, you still should be for the vaccine.
Bill Gasiamis 12:08
And it’s like, okay, individually, I shouldn’t be anything that I don’t want to be. But again, we’re being coerced to, to be told how we should be responding to the vaccine, even after it’s harmless. And there’s no one coming forward going. Let’s help you out. Sharif. We don’t know if it was the vaccine. But the coincidence is, you know, we’re going to take that into consideration.
Bill Gasiamis 12:35
And now we’re going to throw as much money as we can at you like we did to the rest of the population. To save them, we’re going to try and save you, I think it’s largely terrible. And I might lose friends and followers for that, and I don’t really care. But but we need to take care of everybody, at every level.
Bill Gasiamis 12:57
And when when when you’re in a situation when you’ve had a stroke, and you’re a fit and healthy person, then there’s no real reason why you should have had a ischemic stroke in the back of your head. I think that people have been let down again, a second time, you know, so I get really passionate about it, and I’m on your side, and I want to I want to help you out. I don’t want to also make this a conspiracy thing, because it’s not a conspiracy thing.
Bill Gasiamis 13:27
There’s no such thing as a conspiracy. It’s just a reality. And we’ve had enough time to reflect back now and go Well, we, we made some really big decisions over a short amount of time. And we didn’t contemplate the consequences. And one of them. The one of the consequences here in Australia after lockdown is that in Australia, in Melbourne, we were locked down for one of the two years, almost an entire year, we were completely locked down.
Bill Gasiamis 13:58
And now we’re getting the after effects of that we’re seeing we’re seeing that there’s a mental health epidemic, there is a lack of staff epidemic, so people cannot find staff to fulfill roles in businesses. And businesses are shutting down because all the people that were in Australia, or the immigrant workers left, and they’re not coming back.
Bill Gasiamis 14:23
And you know, at the beginning, the racists would say, we don’t need immigrant workers. They’re taking your bloody jobs, or Yeah, right now that they’re gone. You want them back. But they’re not here because you didn’t support them while they were here to stay here. You told them to get out this.
Bill Gasiamis 14:44
We don’t want them in your country, in our country because, you know, they don’t have any rights here. But now they’re going well, the borders are open again. We want you back. I mean, come on guys, like it’s one or the other. You either want these people to help us fulfill the roles that we need to fulfill and avoid the disaster that’s going to come down the pipeline.
Bill Gasiamis 15:05
Because now we have the disaster of too much debt, Australia has got more debt than it’s ever had. It’s got less people to do the jobs. It’s got a population that became sick after the vaccinations and heart disease is on the rise spiking, like dramatically up. And we’ve got all these pressures on the medical system.
Bill Gasiamis 15:28
And we’ve got all this stuff. And no one’s coming back and going, we were wrong. No one’s going back and going, we’re sorry, no one’s going back and doing any of that stuff. And I think it’s the responsibility of people who make decisions like that to when they reflect back on their decisions, instead of trying to hold your position in power, and continue to divide the population and tell everybody what, how we should either be on this side or that side.
Bill Gasiamis 15:54
And that we should dobb on our friends, if they if you see him outside in the cafe when they should be at home or locked in their house. I mean, it’s just the whole thing is bloody ridiculous. And I feel for people like you, Sharif, and it bothers me that they won’t tell that they’ll wash their hands of it and say, Oh, well, you know, we don’t know, we’re not really going to know. It’s terrible.
Sherif Aboutouk 16:20
look, I mean, I think in Australia, you had one of the most draconian lockdowns and I mean, I think they started off by fear was like, you know, it was very taboo not to say, if you say you’re not going to take the vaccine. Now, for some reason, people can just publicly say, and until can people go okay, there’s no problem.
Sherif Aboutouk 16:41
And I think having your couple of this by giving you a fine, it just have no other alternative, but to take it. And look, I mean, again, you know, this is, you know, if it comes back with time, I would, you know, maybe I wouldn’t have taken it just for myself.
Sherif Aboutouk 16:57
But then there was always that collective thinking in the news everywhere that you are helping other people. So it’s not about you, you might not get it, or you don’t want to transmit it, which actually, after a while, did improve that was what like that.
No one talks about covid-19 anymore – Sherif AboutoukSherif Aboutouk 17:18
And I think, you know, what I would appreciate now at least, is that someone, as you said, is to kind of just have a conversation about it, and be open about, but no one talks about COVID anymore.
Sherif Aboutouk 17:32
They only talk about the, you know, the economic instability, no one talks about the vaccine anymore. And I think there’s a rest responsibility, not just from politicians, you don’t really expect much of them.
Sherif Aboutouk 17:44
But I think responsibility of people that are popular that talk about it and bring it on. And I think, you know, I remember when I had the stroke, I was just Googling every single thing. And it was really hard because I have amblyopia so I don’t see my right side.
Sherif Aboutouk 18:04
So reading is really hard. And I was trying to see what’s linked to and then you hardly got any results linking to the vaccine, and had a bit about AstraZeneca, then, but when I do it today, there’s so many research that says, right, no one’s gonna say it’s 100%.
Sherif Aboutouk 18:22
But then when they do the study, some people do get blood clots. So I think it’s unfortunate. And it’s, you know, I try not to think about it too much in terms of, I’ve been failed by the because, you know, I already have a lot to deal with on my plate.
Sherif Aboutouk 18:39
And I think what I don’t want to do is to find another excuse to be like, right, it’s not going to help me, so I’m going to help anyone. So I’m trying to think about it as more. You know, I was one of the unlucky people in a way, you know what I mean?
Bill Gasiamis 18:54
Yeah, I love that man. It is your right. It’s definitely needs to be something that we’re aware of. It needs to be something that we know how we got here. And like you said about the politicians, no one’s saying that it was our decisions during COVID lock downs that ended in the economic disaster that we’re finding now.
Bill Gasiamis 19:12
Now, they’re just talking about the economic disaster. It’s a separate thing, as if it wasn’t us that put you in this position. Right. And and I agree with you. So what we’re doing now is we’re addressing supposedly, the issues without actually revealing the cause of the issues.
Bill Gasiamis 19:29
And like yourself, is no point going down that path and I’ve avoided getting engaging in those types of conversations as well for the most part because it’s not helpful. It doesn’t help my mental health. It doesn’t help any anything other than getting me angry with somebody or they getting them angry with me.
Bill Gasiamis 19:48
And what we should be doing is during economic difficulties coming together, finding way to support each other, going to your neighbor, that one that probably rang the cops to say that you’re outside and going can I help you out with something, you know, can I get you a meal or whatever, because we have people that are in that situation right now.
Bill Gasiamis 20:06
There’s never been more homeless, there’s never been more people are living under the poverty line can’t pay their energy bills. You know, there’s so many issues. And we haven’t united. After all the stuff that we went through in the last two or three years, we haven’t yet reunited, so everyone’s still divided.
Bill Gasiamis 20:26
So now when we need each other more than anything, we haven’t got each other because we can’t put our differences aside. And we need to put our differences aside doesn’t matter to me what your political affiliation is, or, or what your vaccination status is, or any of that stuff. My podcast is a classic example of what we need to do is find people from all around the globe that are completely different and bring them on the podcast.
About stroke recovery being google proofBill Gasiamis 20:54
And let’s talk about stroke, recovery from stroke, overcoming stroke, so that we can bring all these different people from different religious backgrounds and all that together, where we have something in common.
Bill Gasiamis 21:07
And we celebrate that and we support each other. That’s what it’s about. And and you know, what you’re saying about the censorship on search engines, and all that kind of stuff that does happen. That’s a reality because Google doesn’t prioritize my podcast as content that is necessary for stroke survivors.
Bill Gasiamis 21:32
So I cannot advertise my content the same way as somebody who was talking about say, a paparazzo, who was talking about the photos that he took of, you know, famous people, if you had a podcast, his podcast might be number one, because he can advertise that simultaneously on all these platforms.
Bill Gasiamis 21:58
Whereas Google restricts the way I can promote my podcast, because it’s not considered the authority in stroke rehabilitation, and all that kind of stuff. And I kind of get it. But there is no nuance there. It’s either we’re promoting the big fish, or nobody, we’re not promoting the other people who are actually doing the work that supports stroke survivors.
Bill Gasiamis 22:25
So I’m really passionate about this. And I really don’t want to take it into that zone where it’s becomes unproductive. But I say it to give people things to think about. And that’s it, and then they can make their own decision, right? And then we are all going to move on as best as we can from everything that we’ve been through, as well as the stroke.
Sherif Aboutouk 22:52
I hate to disagree with you on this, but I disagree that the saying I agree that they shouldn’t really pop up your podcasts on Google search, you know, I started listening to you three months ago.
Why stroke podcasts are so importantSherif Aboutouk 23:06
And I can tell you hand on heart. I only listen now to your podcast and have probably gone through 30 episodes or so. And the amount of knowledge and hope the I have gained from that is honestly, a hundred times more than the experience I’ve had in hospital.
Intro 23:30
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse?
Intro 23:48
And doctors will explain things that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you.
Intro 24:10
It’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition. They’ll help you take a more active role in your recovery. Head to the website now recoveryafterstroke.com and download the guide. It’s free.
Sherif Aboutouk 24:33
I was in Majorca for 4 days had a bunch of stuff done went 10 days back home in Majorca and then flew to London on a Monday. Tuesday I went to Charing Cross Hospital which is meant to be the stroke pinnacle.
Sherif Aboutouk 24:50
And long story short when they discharge you of the clinic. I think the one and the most important thing is that you know what, listen to this guy’s podcast. You know, there might be a disclaimer, like it’s not medical, but these are other people that have been through this thing, and they can talk about it.
Sherif Aboutouk 25:08
The thing is with neurology, it’s a black box, no one really opens you know, it’s not like if you have a sort of, you’re operating on a leg, you had brain surgery, of course, but I think for someone who did not and only had a stroke, all they can do is that take blood thinners, steak, statins, and I’ll see you in three months.
Sherif Aboutouk 25:34
And this is the charity for stroke that you get in touch with that, you know, they’re trying to do their best, but it’s also very limited. No one can really relate to a stroke survivor, and the stuff they go through emotionally, mentally physically, like some of that has been that.
Sherif Aboutouk 25:52
And I think, you know, I hope one day we become in, you know, hospitals and doctors just listen to this, because, you know, you know, what the neurologist kind of technique is, they all look here, there’s Can You Feel this? Can you feel that, and that’s it, oh, you have a stroke, can’t really do anything about it.
Sherif Aboutouk 26:15
But we do a bit of investigation, see, if you have a hole in the heart, MRI and the brain MRI on the heart. Some people do a lumbar puncture, lalala and then sometimes all for my case, it all came back negative and then they go, right? We don’t know.
Sherif Aboutouk 26:32
And that doesn’t give me hope. Well, it does give me hope is for me to listen to someone who might have much more of a disability than I do. And see that they have, you know, conquered the become stronger, and IE someone like yourself. And I think this is really valuable. And I think search engines should be looking at this differently.
Bill Gasiamis 26:53
I agree. The interesting thing is the Stroke Foundation in Australia is this first organization that I went to to get beyond stroke support. Because the hospital, my experience was the same right. And they were great. They helped me out and I made a pate, and I’ve been a face of a few of their advertising campaigns. And I’ve done a TV commercial for them. And I’ve done a whole bunch of things for them. B
Bill Gasiamis 27:19
ut as far as uniting the people who are doing really good work in Australia to promote stroke recovery, they do a good job of that they’ve got that they get government funded and, and funded by other people, I imagine them privately to run their programs, and they do a good job, but they can’t allocate enough funds to a podcast that is stroke related from their organization, they don’t really do a good job in having their own organizations podcast.
Bill Gasiamis 27:56
So you would think that they would reach out to the people who are doing that kind of work and promoting it at their end. But they don’t. They don’t, they’ve never approached me. And they know what I do, they’ve never approached me to say, how can we collaborate, I don’t get paid for this bloody podcast, I do it for free, it costs me money, every episode that goes out takes a minimum of about 10 hours work to get it ready, including the interview.
Bill Gasiamis 28:30
And I’m trying to make some money out of it by promoting my coaching and selling a few courses and all that kind of stuff. But it’s never made any money. And I’ve been doing it too, since 2017. So it’s not money that I need. But it would be great if I had the opportunity to get it in front of the right people without doing all the legwork myself.
Bill Gasiamis 28:55
But their mandate is that they are funded by the government or whomever is funding them to raise awareness about stroke and to prevent stroke happening in the future. And they are told how to do that they need to do it in this certain manner. And you can’t allocate funds to this like that. This is what you get funded for. And this is how you have to show us that you’ve done it.
Bill Gasiamis 29:22
So at the very top of the spectrum where the government again is getting involved. Those guys, the government is missing out on an opportunity to decrease the amount of mental health issues the emotional issues all the challenges that stroke survivors face that’s costing the government money because when stroke survivors can’t get back to work.
Bill Gasiamis 29:45
They rely on government handouts unfortunately a lot of people to get through their bills and to overcome you know, their their living situation and and the rest of it so I my my call how has always been to unite people but but people are very easily divided just because of our little differences, whatever they are, and our core beliefs, you know, and that we suppose that they should all think the same thing or not.
Bill Gasiamis 30:11
And, and that’s where I get disappointed. And that’s why I just, I never talked about it, you’ve raised that you’ve raised some things that have made me talk about. So what we’re going to do here is, we’re just going to bring it to the air. And then if somebody hears this and goes, Hey, I know how I can help or I know how we can get in front of more people, I know how we can bring on a strike organization or wherever met, I am up for it.
Bill Gasiamis 30:39
But what I’m noticing is I’m getting contacted by a lot of people who are doing it on their own. A lot of podcasters are doing their own version of a stroke recovery podcast, but they’re doing it on their own. And then there’s a lot of amazing people who come on my podcast, who I share their information, you know, therapists have every kind of background.
Bill Gasiamis 31:01
But again, they seem to be doing a little pockets on their own in their part of the world. And it’s all fragmented, you know. And the only thing that’s not fragmented about my podcast is that it goes out on every podcast app. And that makes it easier than it used to be for people like you to find it.
Bill Gasiamis 31:21
And so there’s hope there. And I am thankful that it helps people like you, and it would have helped me when I was doing it. And that’s enough about me, man, I think this episode is supposed to be about you.
Sherif Aboutouk 31:37
I’m glad you bring this topic up. Because, you know, honestly, I think the only way you can help stroke survivors is by speaking to other stroke survivors and sharing your story, whether it’s worse or better, and see how they cope with things, at least that works for me. And I think the how I Found You was searching for stroke on Spotify, I found this organically and there is a big part of your audience would be people seeking information.
Sherif Aboutouk 32:15
And your episodes are an hour an hour, 15 minutes long. And no one it’s not like a song or a reel or a show that are 10 seconds and then you can have a million people looking at it. But you think about it, someone is spending an hour and 15 minutes every day, at least for me to listen to other people voluntarily without being having any marketing or advertising.
Sherif Aboutouk 32:40
It just shows the credibility and the impact that you and other survivors doing by coming on to the podcast. So I think they 100% agree that we have more people like you united all together is going to make a huge difference to people that might have a stroke in the future.
Sherif Aboutouk 33:00
People that are having a stroke and don’t know they have a stroke or people that trying to recover from a stroke. And still struggling. I mean, I can definitely say I’m one of them. So, you know, I sometimes listen to your podcast, and I see, you know, I always I said that a couple of friends as well.
Sherif Aboutouk 33:17
It’s like, a lot of the people that you know, a big chunk of them are very optimistic, and they might have even worse disability than what I have. And I’ve heard that quite a lot. And I agree with it. But I see where it’s coming from is that I’m kind of secretly glad I have a stroke or something like that, because it’s changed me change to where I am.
Sherif Aboutouk 33:44
And so what I think about this, I don’t want a stroke. I don’t want it. I don’t want to have it. I wish I have my vision back. But I can see where that’s coming from. And that in itself gives me hope. And I think this is a very strong message that a lot of your audience bring to that podcast and you as well.
Stroke is the best thing that ever happenedBill Gasiamis 34:02
What about me, man, I went through four years of shit, right? And then one day I said on the podcast, I think it’s the best thing that ever happened to me. And then it’s like, oh my God, what are you talking about? How do you come to say that? And then and you I believe that?
Bill Gasiamis 34:19
That is a very common thing in not only stroke but in lots of different health conditions where people suffer and go through and they say what you said Sherif, which is it changed me somehow for the better. Even though I’m going through all this stuff, it somehow made me think of things differently.
Bill Gasiamis 34:38
It was the reset that I needed. It was this it was that and it’s like well, okay, I get it, because that’s the race that I had and I was talking about it yesterday. And for me. What it did is it showed me how short time is time doesn’t mean anything. And today could be it. And if today is it what have I left behind?
Bill Gasiamis 35:00
And I’m not talking about my legacy, my 45 storey building in the middle of the central business district, you know, that says that’s got my name on it. I’m not talking about that. I’m talking about my kids. What are they going to think about their old man who was cranky, yelling, screaming, and thought that I was doing the right thing. And I’m being tough with them and rough with them and all this kind of stuff.
Bill Gasiamis 35:22
One of them thrived. The other one wasn’t enjoying it. But I thought now one, one approach applies to everybody. What stroke showed me clearly, at least one of my kids was going to think I was an idiot when I died. And I was like, Oh, I don’t want that anymore. Okay, but now that I’ve made the decision to fix that, so to speak.
Bill Gasiamis 35:45
If the right word is fixed, but to make that better, it somehow opened the door for other things to be fixed. It wasn’t intended. But oh, that got sorted. Or it’s getting sorted, or it’s getting better things are improving. What else can I improve? Oh, okay, I’ll, I’ll try that. Oh, my God, that gave me pleasure, enjoyment. That made me feel good about myself. And then it’s like, now I’m looking for things to improve and make better.
Bill Gasiamis 36:20
Where before I was looking for things that were wrong, where the problem was, who was at fault, and why they aren’t doing what they were meant to be doing. And that just happened organically out of a fear that my kids might think that I’m a cranky guy when I when I died. And that’s the legacy that I left behind. So tell me about your version of how it kind of helped you to become better. Tell me about in what ways?
Sherif Aboutouk 36:53
I mean, probably, I’m still on the journey. So maybe I’m hoping in a couple of years, I’ll be able to say that. You know, I think there’s a number of things that I think you mentioned something about how time is so short, and I think I just became a lot more closer to the people that I care about.
Sherif Aboutouk 37:22
And you know, having my mom with me then spending five weeks with me I you know, I see my mom twice a you know, two years a week a year, spending a lot of time with my mom didn’t want her to leave where you know, before be like, oh, when are you going to go home, that sort of thing.
Sherif Aboutouk 37:39
Just made me value relationships made me think that I’m not necessarily a very religious person, but I know my religion, if that makes sense. So, you know, Muslim, you know, I practice like, you know, definitely inside of me, I’m a true believer, but maybe not necessarily following it as as much as I should. But I think made me also become a lot closer to God.
Sherif Aboutouk 38:12
And God is whatever God you want them to be God, right? Like, for me, it’s Allah, it’s God, it’s who I think of whenever I’m in a bad situation for someone else, it could be something else. But you start to think about things that you might not thought about it before.
Sherif Aboutouk 38:28
You start thinking about what really matters is building memories and building relationships with people that you really care about. And your skills become a little bit more selective about who you want to hang out with. Who do you want to talk? Who do you want to open your books to?
Bill Gasiamis 38:48
Why is that important?
Sherif Aboutouk 38:52
It’s social life is a big part of your life, having people in your life sharing people that you can talk to them that that whenever you want to be you know, your wife, your kids, your, your parents, your very close friends, living by yourself and isolating yourself from other people or just doing the things that activities that you like, but not really trying to invest in others is not in my opinion doesn’t necessarily help you.
Sherif Aboutouk 39:23
Because at the end of the day, if I’m walking down the street, and I help some stranger, I feel great. You know, it’s it’s how do you kind of it’s relationships is given taken you invest in people, if you Yeah, if you don’t invest in them, you’re never gonna get it back. And it’s the same thing you know, you can always take the kind of the family relationship.
Things that matter after the ischaemic strokeSherif Aboutouk 39:49
If you kind of like just feeding your kids and when they’re 17, 18, they’re moving out you’re making the party because you can go out, ferry or whatever you’re gonna do it I’m not going to give you that the same way.
Sherif Aboutouk 40:03
And you probably have heard this. In Eastern cultures, and specifically in Middle Eastern cultures, family is a big thing you’re always going to find the family member living with, the kids are never going to take you to the care home. And it’s not, it’s just how it is they invested so much in the person in their children, that children will never be like, Oh, I think you should go to.
Sherif Aboutouk 40:31
And sometimes it might be better for the mind, I totally agree with this, I’m not against it, but I’m just talking about how when you invest in something, you’re always going to get it back. And I think that after the stroke, it made me realize who are the people that are actually valuable to me, the ones I want to invest time with, and who are the ones that can be acquaintances.
Bill Gasiamis 40:55
I think your story, a very interesting one. So one of my really good friends, she’s been through traumatic couple of years where she lives lost her mom and her brother, and then lost her dad a year later, and they’re not religious at all. And what she said is that she was with her dad when he was, you know, his last few breaths and was like, What are we doing, and he was so much into sports.
Sherif Aboutouk 46:57
And she was reading to him, sports news. What, once in the story is that God is whatever you want to make God if for him, it was sports, if that’s what condom if I was in that situation, they would read the Quran, you know, it’s, you know, if I if I listen to the Quran, I get very emotional, if you listen to it, nothing’s gonna happen to you.
Sherif Aboutouk 47:22
It’s, you know, it’s, it’s how you. So it’s how, if you a carrots every day, for the last 20 years, you will love character, you’re always gonna eat cat, it’s how it is, if you kind of lived in an environment that is influenced by religion, and then you are somehow going to be influenced by that.
Sherif Aboutouk 47:43
Now, it’s not a question of if it’s right or wrong, that’s I’m not going to get into this. Because you the three things that I really don’t care about what you eat, what you do in bed and what you believe in, had none of my business, you know, you can do whatever you want to do.
Sherif Aboutouk 47:59
As long as you are a decent man with me, this is all a cares, you know, decent person. So, yeah, I totally understand what you say God is within me. It’s whatever you make it some people worship different things. But if that makes you feel that rocks your boat, that’s all it matters, right?
Bill Gasiamis 48:18
Yeah, I think you summed it up beautifully. I think that’s it. And that’s how it worked for me. And it works. Because it just seemed to be the first time that I’ve been able to really get results from myself. Where I was, I was always in my own way. I was in my own way in life, with my children with work with everything with stroke recovery, until I wasn’t in my own way anymore.
Bill Gasiamis 48:45
Now, that doesn’t mean that I don’t have doubts. And second thoughts and concerns about whether what I’m doing is right or wrong, it just means that I am at least able to see when I am in my own way. And I can catch myself and go alright, stop doing that move on.
Sherif Aboutouk 49:06
Yeah, and look, there’s also like, there’s something really interesting now about me that I would think what was I upset about before the stroke, you know, what was actually you know, that it’s all bullshit. You know, what I mean? I think at some point, the more life kind of throw things at you, the more you start actually become a lot more receptive to getting up.
Sherif Aboutouk 49:35
I mean, 50 cent is not normally someone I’ll quote but he once quoted and said that, you know, you very hard going to find someone who’s struggling with life, who’s going to tell you, I’m depressed and I’m stressed out, they’re too busy. They’re running around doing this and doing this and doing that and, you know, I see a lot of people that might have very successful at work, they might have children that, you know, autistic, they need to look after them, they’re also looking after their dad.
Sherif Aboutouk 50:08
And you see that they’re successful, almost everything and you see all the people that might have, you know, born in a gold spoon in their mouth. And then they always talk about stress and depression and stuff like that. I’m not I’m saying it’s not there. Obviously, it is there as a medical condition.
Sherif Aboutouk 50:25
What I’m saying is that when life throws at you stones, and then you have gummy bears thrown after you afterwards, you go all right that’s just a gummy bear man. But if you only have gummy bears, it’s always gonna be a gummy bear. You know?
Bill Gasiamis 50:42
If you only had gummy bears, you always feel that they’re stones because you’ve never had these stones. Yeah, it gives you a contrast, doesn’t it? And that’s the thing, you said a great thing. It’s like, you didn’t know what you were angry about before. But before you were angry, and that’s describing me, man, and it’s like, Oh, what, what was it again?
Bill Gasiamis 51:05
Why was I and it’s just something that I had somehow worked up to 37 years of it, right, I had worked slowly to be at that point. And then the, the bleeding, my brain happened, the brain switched off, and the head stopped telling me stories, because it wasn’t actually working. And then my art came online.
Learning how to use the heart after the ischaemic strokeBill Gasiamis 51:27
And then it’s like, wow, okay, I can see life through my heart, I can actually observe the world through my heart. And my head is not telling me a story about that. And that was more joyful and more connection was happening and, you know, things were being put to rest.
Bill Gasiamis 51:50
And I wasn’t angry, and I was less, whatever. And is that how you experienced as well? Is that does the stroke kind of then go? That happens in the head and then something else comes to life? Did it come to life? How did it emerge?
Sherif Aboutouk 52:12
So I think there’s part of it, where when I was in hospital in Charing Cross Hospital, I was in the ward and seeing people around me and how they were affected. I mean, I look fine, I still work out every day. And, you know, I still play tennis, which is really hard with heartbeat, half blind, I don’t cycle outdoors as much as I used to do.
Sherif Aboutouk 52:36
But then a lot of the things that I used to love doing, I can’t do any more now. And, but I also kind of when I was in the ward and seeing people can’t move, can’t talk, getting seizures, and looking at them and thinking, right? I could have been one of them. It kind of feels like or ungrateful to what I have.
Sherif Aboutouk 53:03
But then I always kind of I can’t still get over the thought that haunts me every day, why me? Why did I have to go through this? What so you know, I would love to sit here and say, Look, you know, you know, a past the three stages that you always talk about building emotional, the mental and the physical.
Sherif Aboutouk 53:24
I don’t think I’ve passed any of them yet. I’m still in the journey. And I’m hoping that one day I will. But it just gives you a very different perspective and lens, when you see what other people have been. And this is what, again, what your podcast has helped me because, you know, I’m talking about a bunch of people that were in the ward next to me, and you know, hearing about their stories.
Sherif Aboutouk 53:50
And hearing about other people going through the same thing younger than me. 21 year old has a bleed in the brain and people that can’t see on the right side, like some of your viewers just so you know, you’re not alone in this, you’re not just cherry picked. And you just need to, you know, being sad is not going to help me.
Sherif Aboutouk 54:12
So I’m gonna help anyone, right, being upset, not going to help anyone. So trying to do the most you can do with what you’ve got now is what I tried to do. But I can’t help the fact that every day I look in the mirror, I can’t see my right eye. It’s just so it’s very spooky as well, like you, you know, be walking in the street and someone walks on the right side.
Sherif Aboutouk 54:39
I wouldn’t see them until the vet or I would. It’s quite interesting. This story is actually really interesting. I remember and this is how shows you how human interactions are really important. So when I came out of hospital, I remember going to Marks and Spencers supermarket around here and wanted to buy to react system.
Sherif Aboutouk 55:00
The worst thing for someone with a hemianopia is a supermarket shopping or any crowded places, because they just get confused, they can’t see. And normally when you go look at the aisle and you just look there, you can see all the brands, you know, that’s fine. That’s the reality.
Sherif Aboutouk 55:15
And then now I have to focus. And I asked the guy that was the first day of the hospital, was it Iraqi source and gave it to me? Oh, somebody because I just had a stroke. And the guy was all I had a stroke, imagine law.
Sherif Aboutouk 55:30
And then now, I don’t even mentioned it to people. Because back then I needed that emotional connection with people. I needed someone to go, Oh, what happened? Which I didn’t get from the guy there. But anyway, it’s yeah, it’s really interesting how it makes you think differently about certain things throughout your recovery.
Bill Gasiamis 55:52
Yeah, I would say to you, I’ll tell you a bit of my insight why I am where I am. And it’s got a lot to do with what I was doing before the stroke. And because I was angry, and an eel guided I was ill guided by myself, I was that at least I was at least counts getting counseling. So I had been in counseling from the age of about 25.
Bill Gasiamis 56:17
We lost a very loved one, dear brother in law of mine, who was in his 30s when he passed away, and I was, yeah, thanks, man. It’s good. Now, I mean, it was five years. I was five years younger than him. And it was the first person that I had known and truly loved that passed away.
Bill Gasiamis 56:38
And it was so hard, devastating. And I went through this process of going, I need to get some help for this, because I don’t know what it means. It’s, I’m going to how to deal with it. So what I was doing was going to counseling, and by the time I got to the age of 37, I’d been in counseling for eight years.
Bill Gasiamis 56:58
And I’d go sometimes monthly, sometimes I wouldn’t go for six months, and but every time I went, I think what it enabled me to do was overcome some of those things that had been haunting me from my early years to my say, the 25th year of my life. And then it was like, I was then just dealing with life events as they were occurring.
Bill Gasiamis 57:21
And I wasn’t dealing with a compilation of things that I’ve never dealt with. So as I got to stroke 37 I was kind of like, ready, I was ready to Alright, what’s next? What is this thing? How am I going to overcome it.
The emotional recovery is the most important recoveryBill Gasiamis 57:37
And I think the emotional recovery for me was the one that was the most important, I see it now I didn’t see it, then it was the one that was the most important because that allowed me to at least have some relief in my head, which said, if you do die, at least you make good with the family.
Bill Gasiamis 57:56
And that takes a burden off my shoulders, and then I feel lighter. And then I can focus because I’m not in it. My energy is not getting drained by my emotional state and my emotional challenges, then I can focus on the physical and mental recovery. And the mental one is the talking one. So so I’ll separate the the mental recovery from the emotional recovery.
Bill Gasiamis 58:20
So the emotional recovery was I go there, and I speak about what feels painful, what feels in my heart painful. What I’m doing when I’m doing the mental recovery, I’m talking through my thinking process to see if my thinking is supporting me, or if it’s not supporting me. And then I’m replacing thinking patterns that don’t support me with new thinking patterns that do support me.
Bill Gasiamis 58:52
Okay, so I would always ask I’ll tell you what the question that I would ask, the question would be does this serve me? And that was it. That question changed my life because I would get to the point of being in the car, for example, and the guy in front of me cut me off, but we didn’t have a collision because he saw me I remember I saw we stopped no one had a collision.
Bill Gasiamis 59:28
And then I would oh, what getting angry that’s not going to achieve anything that’s not going to serve me what will serve me acknowledging the guy made a mistake. He acknowledged that I know that he made a mistake and he said so. And then all we did was move on. So the does it serve me really made me think deeply about my behavior and am I getting myself wound up for no reason?
Bill Gasiamis 59:53
And then can I move on and let it go? So that changed my thinking. That emotional one was the The family one, that relationships, when it’s about relationships, emotional stuff, it’s about forgiving the past, people who have harmed you, people who have done the wrong thing inadvertently, I forgave my parents were just being themselves, I forgave them in a way, which was like they did the best they could with the resources that they had available to them.
Bill Gasiamis 1:00:23
I mean, they were hard, the educated, they left Greece with nothing, they came to Australia with nothing. They made a career, they made a life, they made a family, they made all these things. And it’s like, with nothing, they achieved all of that. And I’m in Australia, and I’ve got everything.
Bill Gasiamis 1:00:41
And I reckon that it’s too hard to have a life. And I’m complaining about that. So I forgave my, my parents, for, for what I used to, it’s not true, but I used to sort of make it like, I got the wrong parents, you know, what a terrible thing to say about your parents that you got the wrong parents, they taught me in the best way they could.
Bill Gasiamis 1:01:06
And as a result of that, I happen to be living in born in Australia, one of the best countries in the world to live in. I mean, you know, so there’s that. So I separated the emotional part. And the mental part, understood that they are different, but they both serve me. And I’ve, if I ever come them both, if I deal with them both, they’re both served me really well to move forward with our baggage.
Bill Gasiamis 1:01:30
So that I can really focus on my physical recovery, because that’s where the biggest challenge for me lies. Now, my biggest challenge is my physical recovery. And it’s kind of got to the point where now it’s maintaining what I’ve recovered, and not losing it. And not not going backwards as I age.
Bill Gasiamis 1:01:51
And as my brain goes through the normal aging process, where as, as it ages, you know, people lose some function, and they lose whatever they lose as their brain age. So my aim now is to just keep my brain in the most optimum condition, I can possibly keep it right. So if people have never, some people don’t grasp the concept of the emotional recovery, they can’t sort of separate it or isolated and see it as a thing.
Bill Gasiamis 1:02:19
Because they have barriers built up around their heart. And if somebody in who’s listened to this past podcast, or watching it has ever said, I am never going to let another person treat me like that again, or harm me again, there’s a good chance that they’ve created a wall and a barrier, they did it at a time, which was really difficult.
Bill Gasiamis 1:02:42
And they’ll protecting their heart and themselves from future pain and suffering. But then, when they have grown up and continued with life, they’ve forgotten that they’ve said that and to pull the barrier down, and to open their heart again, and to let people in. And I was creating kind of little barriers.
Bill Gasiamis 1:02:59
And I was really the kind of guy who wore my heart on my sleeve, really emotional, really getting upset at the drop of a hat. And everybody thought that everyone had it in for me, thought that everybody was, you know, laughing about me and teasing me and doing all this kind of stuff.
Bill Gasiamis 1:03:16
And it was just not true. It maybe did happen in the schoolyard when I was seven or eight or nine in one particular lunchtime. And that I realized that I was still behaving like a school kid at the age of bloody 37. And the people who I was behaving like that to was the school children that I had in my house. You know, and it’s does that serve me? No. Put it aside.
Sherif Aboutouk 1:03:49
Yeah, I think I think you mentioned a very interesting point there. It’s it’s very brave of you to admit, no, I think the first thing to kind of change is to admit that you were wrong. And I think many people don’t do that. And the first thing that you said someone something else got defensive nowhere or trying to do this. And, you know, I think I used to work for Amazon for nine years.
Sherif Aboutouk 1:04:19
And we we live day in and day out with leadership principles, and one of them was vocally self critical. And I think we get ranked on a number of leadership principles. And I think, something we need, we might need more of is people to go you know what, I’m wrong.
Sherif Aboutouk 1:04:37
I was wrong, and I’m going to change it. But the easiest thing and I think you articulated it really well here, the easiest thing is to say it’s not my fault, it’s my parents, it’s not my fault, it’s this, it’s not my fault it’s my stroke, it’s not my fault it’s this.
Sherif Aboutouk 1:04:56
And the more you do with this, the more it becomes a habit And it’s really hard to change habits. So for you at the age of 37, for whatever reason, this was the stroke of something else, and you’ve managed to change the mindset was like, that was bullshit, I need to change things.
Sherif Aboutouk 1:05:14
And now talking about it four, five years later. I think he’s a great example of how you should change. I don’t necessarily, I cannot say I’m on that stage yet. I’m still cannot decouple the physical part from my mental and emotional part.
Sherif Aboutouk 1:05:35
And I need to get over that. Because every day I think about it, and I just get really sad about it. And I think I need to become more of what you are saying is nothing’s going to change the oil and gas division back, it’s never going to happen. You can adapt. So just live it and stick up. You know?
The power of apologyBill Gasiamis 1:05:57
Yeah, I’m going to inspire you now. Right. So this guy, before I inspire, I’m going to tell you one of the best results that I ever had was with my brother, my brother and I, he’s older than me, cat and dog, completely different personality we fight all the time before, right?
Bill Gasiamis 1:06:14
And were having an argument, my parents house had dinner, he was completely wrong. And we never discussed it again since that day and the day after, but I’ll tell you that day, I left the house and for the first time ever, he never said goodbye to me. And my mom was going your brother’s leaving.
Bill Gasiamis 1:06:37
For God’s sake, say goodbye to him he never said goodbye to me. I won’t tell you what he said. The next day, I rang him up and apologized. I have no idea what I apologized for now he probably won’t listen to this episode. So I’m not going to tell him he’s not going to know the trick that I use to make things better.
Bill Gasiamis 1:06:57
I just rang up and apologized for no reason. And I just said, I’m sorry. That’s it. And I said it, I don’t know how many times I said it. And I said sorry, I think I haven’t told him. I think I might have told him I was wrong, but not in those words. That brought down his barriers, that made him feel listened to, that made him feel like I acknowledged his state of mind at the time or his emotional state at the time.
Bill Gasiamis 1:07:27
And it just brought us together, that one conversation brought us together from then on. And he’s not a different guy. He’s the same guy. But we have a different way that we deal with each other now. And I think he got a lot out of what you said. Me, investing the time to acknowledge him at that hard stage that he was going through whatever it was, and he never told me.
Bill Gasiamis 1:07:53
So I had the best result ever just by apologizing to somebody for no reason that I didn’t need to apologize. But I felt like it was the best course of action. Right? And it was, it was a great result. And my brother is an awesome guy. He’s just my brother and we’re always gonna disagree on stuff.
Bill Gasiamis 1:08:13
And then to inspire you. So there’s a guy called Paul Bach-y-Rita he’s a scientist. And he’s passed away now. And he was born in the probably 1950s or earlier 19. I actually probably earlier probably in 1930s. And he was a scientist and he was researching Neuroplasticity. And he was trying to understand how Neuroplasticity works because his father had a stroke.
Bill Gasiamis 1:08:39
And they wanted to help him recover. Now this, the science on Neuroplasticity goes back to the early 1700s. Like, it’s really old. But of course back then they didn’t have the technology to actually show neuroplastic change happening in the brain. So what they would do is they would put out these theories, and they were all based on theories.
Bill Gasiamis 1:09:01
And they’re all based on on rat models. So showing changes in the brain of a rat, who was trained to do certain tasks and a rat who wasn’t trained. But it was inconclusive, because nobody could definitively say that. We saw that as a result of those exercises. And we observed that happening on an MRI scanner or whatever.
Bill Gasiamis 1:09:22
And all that neuro Neuroplasticity sort of work. It wasn’t called that it was called something different. But it all kinda kept bit pushed aside, getting pushed aside, pushed aside pushed aside in the early 1900s. In the early 1800s.
Bill Gasiamis 1:09:38
There was a whole bunch of studies done in Neuroplasticity, and again, it was pushed aside pushed aside until about the 50s and 60s, it started to get taken more seriously because there was more evidence to prove Neuroplasticity and the people who were saying it, were able to create better a better case for the fact that it actually existed.
Bill Gasiamis 1:09:59
And it was hard Putting in the brain changes. And it was the adult brain that they were arguing about, they felt that once the adult brain got it got to a certain stage, it became fixed, and then it never. And then it never went, was able to change. And that’s why doctors used to say, after somebody had a stroke, well, they’ll, they’ll never walk again. And then people would never walk again, improve the doctors, right.
Bill Gasiamis 1:10:25
And then this guy pulled back. eraider comes along, and he’s a scientist. And he, he says, I know, we’re going to take care of dad, because dad has had a stroke, and we’re going to help him recover. And his dad made an amazing recovery. And the work that Paul did with his dad then evolved into this device that made blind people see.
Bill Gasiamis 1:10:47
But not with new app, not with new eyes, and new retinas and all that kind of stuff with the skin. Right? Yeah, you’re looking at me strange. And it’s like, if he’s, he had this device, and it was like a cap. But in front of the cap, there was a big band. And on that band, there was a whole bunch of pins.
Bill Gasiamis 1:11:08
And they weren’t sharp pins, the little pins, and they were blunt, and as the senses picked up an object, say it was a basketball in the front of this person, the senses would respond to the skin and press the circle of the basketball in a very, in a very rough form back then it would press the basketball onto his forehead. And he would then be able to get that signal converted in his head, and he would be able to say that’s a basketball.
Bill Gasiamis 1:11:47
And this person who was completely blind, just no vision at all black, both eyes, he was like, got him to the point where with training, he was able to pick up that basketball and shoot it into a bin, a rubbish bin that was further ahead in the room, and he would get it in there. And then he would be able to see playing cards that had, you know, the ace of spades on there, and the hearts and all that kind of stuff.
Bill Gasiamis 1:12:13
And he’d be able to recognize them. That technology has led to the next device that pull back your reader created, which is with a lady I’ve interviewed Cheryl Schultz, who was the first person that was able to replace her last center of balance. So in her head, all the crystals and all the stuff that caused balance, she lost it all. And she was able to replace that with her tongue.
Bill Gasiamis 1:12:45
And what they did is they put a device that when she moved forward, zapped her tongue forward when she moved back, except the back when she moved left, except that left, and when she moved, right, except that right. So the tongue started to recognize that when the movements happen back forward, right center.
Bill Gasiamis 1:13:02
The tongue started to recognize that she was moving and leaning and therefore to correct. So perhaps this inspirational story is for people who go through this and Paul Bach-y-Rita never experienced the deficit, like you experience another stroke survivors experience. He just did it out of curiosity.
Bill Gasiamis 1:13:28
He just wanted to see if it was possible. But maybe this is to inspire people to feel hope about the fact that technology and thinking in a different way, and having this new way of experiencing your body opens up doors that you’ve never possibly imagined, could be open for you.
Bill Gasiamis 1:13:52
And imagine being the first person to be the model for how to help people regain their balance. And now this was done in the 80s. And in the early 90s, Cheryl’s story starts in the early 90s. These products are now available, you can buy them online, and people are buying them through an organization that was funding and supporting Paul Bach-y-Rita’s work, and that’s a proper product now it’s taken 30 or 40 years, and now they sell it every day to people.
Experiencing the deficits differentlyBill Gasiamis 1:14:27
So my experience with my body feeling differently, because left side feels completely numb when I’m tired. You know, I lean over a little bit and it feels weird and all that. My experience with that has, I see it as a this is an amazing way for me to notice, another way for my body to exist another state for it to exist. And if both sides felt the same way, I wouldn’t notice the difference.
Bill Gasiamis 1:15:01
But because both sides feel different, I noticed the difference. And then there’s some days where I don’t notice the difference at all, even though it is different. And they’re the days that get me interesting. It’s like, oh, how come I didn’t notice it today. And then I noticed that and then and then it’s over.
Bill Gasiamis 1:15:18
And then I go back there. Perhaps there is a piece of technology that you or somebody else, whoever, who has this experience with vision on one side, can develop that deals with peripheral vision loss, and then can support people like you to go into, to feel comfortable about going into a supermarket and walking down the road.
Bill Gasiamis 1:15:41
And doing all the things that you need to do without feeling conscious about I can’t see that side. Michael merzenich, another guy who interviewed who worked on research projects that were as a result of pullback, the Raiders work and these other pioneers developed, the first cochlear implant was part of the team that helped to develop the first cochlear implant, which would not work, he told me, it would not work if it wasn’t for Neuroplasticity.
Bill Gasiamis 1:16:09
He goes, it’s a piece of technology, it doesn’t actually do anything. The brain is what makes the technology successful is what makes it work. And then he’s able with that research and a whole bunch of other guys in Australia and around the world that were able to give hearing back to people who had lost their hearing, by rerouting it, and going through the back of the skull.
Bill Gasiamis 1:16:32
And sending the waves to a part of the brain that picks it up and translates it into into language into sound. So it’s like right now you’re in the thick of it, you’re coming to terms with it, you’re getting used to your new self, you’re getting you’re overcoming your, your emotional and your mental challenges in your physical challenges.
Bill Gasiamis 1:16:56
And then one day you’re going to arrive, you definitely are going to arrive to that stage, which goes I’m alright with this. Or how can I improve this? Or what can I do better? Or how can I help other people? And it’s like, that’s how all these other people started. And I’m gonna say it again, and I said it a few episodes ago.
Bill Gasiamis 1:17:18
The perfect person for me to put up there as our as a new kind of idol to idolize. And not that I idolize anybody. But he’s like, is Stephen Hawking, the physicist who couldn’t do anything who had no movement, no nothing. And he was the best physicist in the world renowned, every award that you could possibly have. And it’s like, why can’t we be the best in the world at what we choose to do, even though we have these deficits, we’re not?
Sherif Aboutouk 1:17:53
100% agree with what you’re saying, as really interesting about what you mentioned about technology, because I was the new device that I saw on the news a couple of days ago, that is literally stick on your stomach. And if someone has Parkinson’s and it turns it on, he’s always shaking, as soon as they’re not he stops or he can walk, he can have a cup of tea. He’s, it’s amazing how technology works.
Sherif Aboutouk 1:18:19
Nowadays, and I’m hoping one day, I mean, no ideas in my eyes, as you know, a five I see my ICS but that grain that translate the message is doesn’t really picture whatever is happening on the right side. And I think with the Stephen Hawking example, it’s quite an interesting one. I sometimes Secretly, I don’t know if you’ve ever done that. Think about what sort of disability it was I wanted to have, instead of what you’ve got.
Bill Gasiamis 1:18:56
You’re an interesting guy, you tell me.
Sherif Aboutouk 1:18:58
I’ve definitely done that. I’ve tell you that. I mean, like, you know what, I would have much rather be on a wheelchair than to not see with my eye. A number of reasons for it. It’s because you can stimulate the muscles. I’ve seen many people that were not able to walk the walked after you know your example of this as well that you know, and I’ve never seen someone or heard that someone got the vision back.
Sherif Aboutouk 1:19:28
Now, there is there’s a neurologist and then there’s a neuro ophthalmologist. So there are very few of them. And they normally work privately. There’s one person Professor left that works and then he just refuses to do everything. privately. I had a really interesting chat with him a year after the stroke.
Sherif Aboutouk 1:19:50
And he can he articulated in a very good way. He said vision is sometimes to be argued as an illusion. What is vision why Do you need your vision, your vision isn’t coming back. But the function, or what you need your vision for is going to improve. And they gave you give me an example is like you play tennis.
Sherif Aboutouk 1:20:12
Compare yourself when you first time play tennis after your vision loss from missing every single ball to now, nothing has changed physically but the adaptation of your body, he said that you move your eyes a number of times a second, you don’t realize that. So what you start getting good at is your eyes movement.
Sherif Aboutouk 1:20:34
And another reason why I think sometimes this is kind of leads to the emotional bit. No one knows I have a stroke. No one can tell I have a stroke. And I think some people are shy in a way of asking how it is and how you are. And I totally understand if you’re born with a disability, you just don’t want to mention it every time.
Sherif Aboutouk 1:20:55
But if someone was born, abled, and that became disability, it’s actually when people asked me, How is it I find it personally, very comforting to talk about it. Because I’m living this world. I live I work full time. And you know, I’m you know, just living my life and don’t talk about it’s in my head every single day.
Sherif Aboutouk 1:21:17
And I think sometimes of having a visible disability, you get this conversation going. But when you don’t you never talk about it, you see what I mean? You just you know, Oh, I’m glad you You’re great. Oh, no, not great. Fucking, I can’t see I have long term fatigue. Short term memory, I get numbness every time I sleep.
Sherif Aboutouk 1:21:43
A lot of things happen to people internally. And I think people always focus on the external part. And I think, you know, it’s it’s, you know, how, what you go through. So, you know, I’m hoping that my functions gets better.
Sherif Aboutouk 1:22:01
My brother always says, I don’t think Elon Musk has this new neurologist company that is basically going to inject sorts and kind of stem cells, whatever it is, and make you kind of, if you have any disability related to the brain, it’s fixed. And, you know, fingers crossed, let’s see how it turns out to be you know.
Ischemic stroke is an invisible disabilityBill Gasiamis 1:22:22
I like that distinction that you made about, if your disability is not visible, you actually miss out on a lot of the opportunity to talk about it, and therefore help heal. That’s something that I’d missed for a while. And that might explain why I have a podcast, because I needed to talk about it.
Bill Gasiamis 1:22:45
But nobody knew that I needed to talk about it, because it didn’t look like I had anything wrong with me. And the podcast is exactly that. Exactly what that is, it’s making up for the fact that in public, or in private life, or wherever, people don’t know what I need to talk about. And they’re not equipped to hear me talk about it anyway. So the opportunity to talk about it was not there. And I needed to find a way and I think that’s what the podcast is.
Sherif Aboutouk 1:23:19
Yeah. And also it can it can fire out that that other way, because you only want to talk to someone who’s actually interested in talking about it. So you’re not going to bring it up, if he hasn’t brought it up.
Sherif Aboutouk 1:23:30
So it’s kind of the, you know, sort of, and you know, people become a bit polite and want to ask about it and stuff. And you know, I think it’s a personal preference, I myself find it. Very therapeutic to talk about it. Because if I don’t talk about it, you just close it in a black box that’s going to explode at some point. And I don’t want that. So I think it’s important to talk about.
Bill Gasiamis 1:23:54
You know, what’s interesting, some shark survivors have come on the podcast, they’ll say, you know, it’s been 10 years, and I’ve never spoken to anyone about it. And I’m why did you wait to come on my podcast for 10 years to speak about it? And they were like, Oh, I don’t know just got on with life and that type of thing.
Bill Gasiamis 1:24:10
And it was really interesting that some people don’t need to talk about it, like I do. They deal with it differently. And that’s cool. I mean, it’s properly cool and I was so excited that the first person they spoke to about it was me and the rest of the world. It’s like okay, you waited 10 years and you really talked about it you know how does your mum and family manage it all? How do they deal with it and cope with it?
Sherif Aboutouk 1:24:40
My mom is my kind of hero really like she’s been always been especially after the stroke. I spent 10 days in Majorca with my mom Aunt and my late uncle, and then I spent five, six weeks here in London with my mom. And it brought me very close to, and it just made me realize how, you know, kind and obviously, she’s always been but just kind of getting this, when you need it is very different than getting it when you don’t need it.
Sherif Aboutouk 1:27:08
You know, when mom says you gotta finish your play, eat this, you haven’t eaten Sharif La La live under the training, it’s just a chore for you. But when you’re actually seeking that sort of kindness, it just brought me a lot closer to my mom. My dad is in a slightly denial mode. Like he doesn’t get it.
Sherif Aboutouk 1:27:08
He got Oh, you’re fine. Now it’s okay, you moved on. And I see where he’s coming from. But sometimes it could be slightly. You know, I just need the people close to me know how hard I’m going through it, and how challenging it is. But, you know, it’s I’m very grateful to have them both.
Sherif Aboutouk 1:27:08
And to have that support from them that will support the they continue to give me I’m very close to my brother as well. He lives in Dubai, and I speak to them almost every day. And I think it’s, again, brings back the whole idea of investment. And, you know, one, I don’t know if you’ve ever seen it, so I don’t have tick tock, I have YouTube shorts, which is the same thing. It’s like 10 Second, and there’s this guy that goes up to people in the States, and be like, Oh, hey, I’m very sorry. I’m really hungry.
Sherif Aboutouk 1:27:08
And I do have $1 spare dollar bill here and half $1. And then he blessed them $1,000 and whatever. And what’s really interesting about this is that most people that give him the dollar are people that are actually in need of the dollar. And then you see other people that oh, sorry, man of God, you know, I’m getting these things to my stepsisters birthday.
Sherif Aboutouk 1:27:13
So I don’t have $1. So are some of you I worked so hard to read? And I think I’m citing this, this example just shows you. Kindness comes from all over the world. And it comes from different people. But I think for me, the most kind soul I’ve had, after the stroke was my mom, she’s she’s been very comforting for me. And I’m very blessed to have her.
Bill Gasiamis 1:27:32
I love what you said about that example, because what that comes from is it comes from people who are in need know what it’s like, when somebody who is in need comes up to them. And then they go, Okay, I know, you need a buck, I’ve got a buck. No worries, I’m happy to hand it over.
Bill Gasiamis 1:27:49
Because it’s not about the money. It’s about just resolving the need for that person, whatever their need is at that moment, right. And your dad’s approach. I feel like people like that it’s more about them than it is about you. So he’s, he cannot imagine his son being unwell. He does not want to contemplate that.
Bill Gasiamis 1:28:11
He only wants to live in a world where his sons are perfectly healthy, and everyone’s well. So if he tells you enough, it’s real. It’s true, and maybe you’ll get well and you’ll be well and therefore his worst fears are not going to come true. You know, and it’s pretty cool. Like, it’s fair enough as well. You know, you totally get that.
Sherif Aboutouk 1:28:35
Yeah, I mean, I love my Dad to bits, it’s just, it’s a very different dynamic to what I have. My mom is also a dentist, she has like some way of understanding of the medical profession and understands, been with me to all the doctors and so on. And it was actually quite interesting because when I came to Charing Cross Hospital, they put me in the stroke ward.
Sherif Aboutouk 1:29:00
And I was in room 4B right. So I was spending a couple of nights in this ward with four other people two of them that were just screaming all night because they’re trying to speak and they can’t speak. And one of them was like really, really in a bad state.
Sherif Aboutouk 1:29:16
But what I was doing is that I have these curtains I will do my little cave and I’ll just sit in my cave and kind of thing and then two days later they came and they said kind of I don’t understand. I think it was a bit of bullshit really your COVID test came back negative. So you can go to the other room.
Sherif Aboutouk 1:29:38
All right, cool. So get to the other room. And then I started kind of putting my bag and you know, the curtains and the nurse comes in said oh, sorry, we have two critical cases here. So you cannot draw the curtains. I said all right, fine. So I sat there, the bed next to me there was a visitor that I heard on the phone.
Sherif Aboutouk 1:30:02
She was like, oh, so and so you know, he’s much better last night, he only had five seizures. And I listen, I heard this. And I just went to the nurse and I said, Hey, can I leave? She was like, Oh, you’re not in prison. You just need to self discharge yourself. Yeah, sure, I’ll do that.
Sherif Aboutouk 1:30:19
So when I signed the self discharge paper, my mum came and heard about it. And she started she’s, like, shouted at me, when she’s like, the nurse says, he’s 35 years old. She said, I don’t care. For me. He’s a baby, he cannot leave the hospital. And then literally, I left on the Wednesday, Wednesday, Thursday, Friday, I still have it to now I can feel my heart rate palpitations all over my body.
Sherif Aboutouk 1:30:51
So that was so severe. So I talked to my mom, I think I’m getting another stroke. And I took a cab and went to A and E, and they put me again, through the same stroke, and I went back and they go, oh, you should have listened to your mom there. I told you not to leave.
Sherif Aboutouk 1:31:06
So it just shows you how kind of parents no matter how old you are. They’re just gonna treat you as a child. And you know, it was very interesting. So bit of a funny story that because I went back and I felt so like, nurses, like oh, I told you not to leave, I was like, yeah I’m back.
Bill Gasiamis 1:31:24
And then you felt like you used to feel like when you were 5,15, 25, every time that your mum pulled rank on you and put you in line, you felt the same thing. And you should have listened exactly. I get it, I get it, it doesn’t change, you’re always going to be your mom’s baby. And it’s not going to change age is not relevant in that in that equation, in that situation.
The lessons Sherif Aboutouk learned from strokeBill Gasiamis 1:31:52
I realize that we’ve been talking for about an hour and a half, and you’re in a timezone, which means that it’s definitely after midnight there. So we should get to wrapping this up. But before we do, I’ve got a couple of questions I want to ask you. And maybe we’ve already alluded to it. But I’m wondering if you could shed some light on what stroke has taught you.
Sherif Aboutouk 1:32:19
Life is short, builds relationships. Look after your body because it’s the machine. These are the three things that I can now talk about. And we are gifted with many things that you don’t really appreciate it being grateful for until they’re taken away.
Sherif Aboutouk 1:32:46
And then a smaller example if you if you if you use a nail clipper and you over your over cut your nails, you nail your like in so much agony, and like you’re in a bad mood La La La imagined peoples that don’t even have a leg, you know what I mean? Like, I think it just becomes makes you so grateful to what you’ve got.
Sherif Aboutouk 1:33:09
And because you’re always going to die, you are going to die. And I think, you know, living with a disability sometimes is worse than dying. Because when you die, you die, right? It’s worse for your family and the close ones that you don’t want to go through when you die. Right. That’s it. So I think, you know, people go, Oh, you could have died. I mean, it could have been it would have been here.
Sherif Aboutouk 1:33:31
So I wouldn’t have felt it. But I think it’s it’s, it’s Yeah, if I summarize, it builds relationships, be aware of your health and your body. And now I’ve got one, but relationship be aware of you, you really be grateful for what you have, and be grateful to what you’ve got exactly, whatever, small or big. And we’re all kind of motivated by a lot of things out there.
Sherif Aboutouk 1:34:02
And the media and you know if you know, I can’t remember the statistics, but if you know if you’ve got a roof over your head, and you know you can afford your dinner, you’re one of the top X percentage of the world.
Sherif Aboutouk 1:34:15
I think we live in a world where we think everyone’s you know, need to have Ferraris and have massive cars and bla bla bla and I think you kind of miss the little things that actually matter in life. You know, you get people that are super rich, and they would do anything to get their health back would do anything to kind of get their parents or their children back have lost and so be grateful to what you got.
Bill Gasiamis 1:34:40
I love it. And this is a question that seems similar, but it’s actually very different. What do you want to tell other stroke survivors that might be going through something similar to what you’re going through right now?
Sherif Aboutouk 1:34:58
It’s a journey that never ends. And if you had a stroke, and you don’t have a disability, be very grateful for it and look after your health and, you know, kind of, you know, if you had a disability and you kind of really upset about it like I am, think about what you what did you need that that part of that became disabled for and you will adapt whatever this is.
Sherif Aboutouk 1:35:38
If you need your legs to walk around, you can be on a chair, and walk around like, try and strip it back to the function of the kind of thing that you use. So, you know, if I lost half of my vision, then I need to work on moving my eyes more to adapt for it, don’t chase getting the vision back, especially I’m talking about vision swap got, don’t chase that, get it back, but what you’re gonna get is the function, what you’re going to use your vision for.
Sherif Aboutouk 1:36:14
I think the psychological and the mental part is just, I don’t think I’m in its place now that I can comfortably give five other people because I’m still going through the journey. But I think listening to other people’s stories on your podcast, or whatever kind of other platform they might be interested in, is the best way to get it at least to have been to at least some of the best six or seven best neurologists in the UK.
Sherif Aboutouk 1:36:48
Private on NHS, they do the same thing. And they tell you the same thing. There’s a protocol exactly what they do, but no one has had a stroke. So no one can explain to you what’s going to happen. So be optimistic, don’t give up because it’s not going to help anyone.
Sherif Aboutouk 1:37:06
And I’m just understand, you know, people, it’s quite interesting when people kind of with cancer survivors of stroke survivors, and people look at them and tell them all you’ve been so strong, is not strong, is there’s nothing else you can do, what is he going to do? Sit at home and cry, he’s actually not strong at all.
Sherif Aboutouk 1:37:25
You know, it’s really kind of you to call me strong. But I mean, I have two options here. Either to dwell on the past and blame lala land, just play the victim part, or to just deal with it, and try and, you know, get over it, adapt, and you’ll get there. Again, I’m still on the journey, I’m hoping one day, I’ll get there.
Bill Gasiamis 1:37:50
I love that. You’re not strong, you’re just getting on with life. And that appears a strength. And that is a strength. It definitely is. But it’s not what you’re going after. It’s you’re not attempting to be strong. You’re just getting on with life. And that is a strength in your character, in your approach to life in how you want to live your life, and they’re very different things, try to be strong, seems like a burden seems like it’s hard.
Bill Gasiamis 1:38:24
You know, I’m going to be strong, I’m going to tough it out. That’s very different type of approach to going about life and continuing life. And just getting through whatever you’ve been through.
Bill Gasiamis 1:38:41
And being prepared to overcome all the challenges and the barriers and the obstacles that come in your way, you just got to continue moving on with life and that strength. But it’s such a different version of it. It’s not. It’s not the one where you tense up and push through. It’s the one where you flow through. And that’s a really lovely strength mate.
Sherif Aboutouk 1:39:04
And if you want to give an example to this, it’s like if life is a chip that you playing blackjack, you’ve got one chip, and that’s life only got life once and you get served. So bad cards, you’re not going to fall die.
Sherif Aboutouk 1:39:20
You’re going to bluff as much as you can to win or whatever you got to do. Like, you know it’s your life. It’s one so you know, I think it’s evil played bad cars deal with it deal with the cars you’ve got now and not try to ask for the dealer to send you this nother set of cars because he’s not.
Bill Gasiamis 1:39:40
I love it. And on that note, mate. Thank you for being on the podcast.
Sherif Aboutouk 1:39:44
Thanks a lot and continue the great work you’re doing Bill it’s definitely helping me and I’m you know I’m sure it’s helping other people as well. Very, very happy to be on your podcast. mate thanks.
Bill Gasiamis 1:39:55
Thanks for joining us on today’s episode to learn more about my guests include During their links to their social media and other pages, and to download a full transcript of the entire interview, please go to recoveryafterstroke.com/episodes.
Bill Gasiamis 1:40:10
If you’d like to try the course five foods to avoid after stroke, go to recoveryafterstroke.com/courses and get on board now. If you would like to support this podcast, the best way to do is leave a five star review and a few words about what the show means to you on iTunes, and Spotify.
Bill Gasiamis 1:40:28
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Bill Gasiamis 1:40:58
Come and join me on the show. The interviews are not scripted, you do not have to plan for them. All you need to do is be a stroke survivor or care for someone who is a stroke survivor. Go to recoveryafterstroke.com/contact fill out the contact form and as soon as I receive your request. I will respond with more details on how you can choose a time over zoom that works for you and me to meet. Thanks again for being here and listening. I truly appreciate you see you on the next episode.
Intro 1:41:31
Importantly, we present many podcast designed to give you an insight and understanding into the experiences of other individuals. The opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.
Intro 1:41:49
All content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis, the content is intended to complement your medical treatment and support healing.
Intro 1:42:05
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Intro 1:42:26
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Intro 1:42:43
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Intro 1:43:03
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The post Ischaemic Stroke Recovery – Sherif Aboutouk appeared first on Recovery After Stroke.
David Sweet was at lunch with his work colleagues when he experienced an ischemic stroke at the age of 50.
Highlights:
00:59 Having a stroke at work
07:07 Stress at work might have caused the stroke
13:38 The best decision
24:22 Dealing with post stroke deficits
30:12 Stroke and aphasia
43:13 Leading up to the open heart surgery
53:37 A link between a stroke and depression?
1:00:15 David talks about the podcast and how it’s helped him.
1:20:41 The benefits of cold showers and plunges
Transcript:
David Sweet 0:00
It was one of the best decisions of my life to have lunch with my colleagues that day. I mean, because on a normal day where eating lunch by myself in my office, I don’t know how many hours would have gone by before a colleague would’ve said, hey, something’s wrong.
David Sweet 0:15
But that’s very fortunate because that I got care immediately. And you know, I had to go to two hospitals before they could remove that blood clot from my brain. As a result of that. I don’t have many physical symptoms, like many of your guests have.
Intro 0:35
This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.
Bill Gasiamis 0:48
David Sweet, welcome to the podcast.
David Sweet 0:52
Thank you, Bill. Honored to be here.
Bill Gasiamis 0:54
It’s my pleasure to have you here. Tell me a little bit about what happened to you.
David Sweet had a stroke at work
David Sweet 0:59
Yeah, so the reason I’m here is because of what happened on April 21, 2017. Yeah, so I was at work that day, it was a stressful period of my life, let’s say at work. And for some reason, that day, I decided to have lunch with my colleagues.
David Sweet 1:21
And most of the days, I always get a sandwich from downstairs and eat at my desk. But on that day, I made this decision to go have lunch with my colleagues in a work cafeteria, and end up being one of the best decisions of my life.
David Sweet 1:41
So after lunch, we went to the cafe, or the coffee corner, I guess you say in English. And after the coffee, we gathered up everyone’s cups. And then I noticed that I was limping. When I was walking to the trashcan, I thought, this kind of weird.
David Sweet 2:08
But then I went back to my colleagues. And then we started walking back to the building we work in and I was thinking to myself, first I don’t have time to go to a doctor now about this limping problem, and moreover, I felt that my limping but had gone away.
David Sweet 2:30
But then about 75 yards or meters later, my colleague, Jonathan, he stopped me. He put his hand on my shoulder. And at that point, I knew something was wrong. And then I blacked out. And then for the rest of the day, I was kind of coming in and out of consciousness. Yeah, so then I ended up having a stroke that day.
Bill Gasiamis 2:57
So you ended up in hospital and you’re in and out of consciousness while you’re at hospital?
David Sweet 3:03
Yeah, so first in and out of consciousness when I was still at work, and I remember at work, one of the points was unconscious to say, having the realization or dream or something like that my right side was paralyzed and I remember feeling very sad and very angry about this.
David Sweet 3:26
I’m thinking what the hell, you know, because I wouldn’t be able to play with my children anymore. It’s just not fair. But then I woke up and then the thought went away. And then I had an ambulance ride to a hospital called and Andrei Mineo in the town. And there they gave me anticoagulant but then it didn’t work.
David Sweet 4:00
So then they had to go for another ambulance ride to another hospital in town and then the doctors did a thrombectomy. And this is a invasive procedure, where they slice a hole in my vein, in my thigh, and then they sneaked up a, I guess, a tube up there, and right into my brain.
David Sweet 4:38
And then they found out where the blood clot was and pulled it out. But at that point of time, I was of course unconscious when they were doing that. So then I woke up that evening in the hospital. At that point, I felt very calm, and then I was surprised that my two sisters in law came to visit me.
David Sweet 5:05
And I was like, wow, it’s good to see you. But one of them say, Hey, David, don’t speak. So I didn’t speak because I was really very, very tired at this point. And, yeah, then my wife showed up some time later. And she repeated herself over and over. Hey, David, I love you. I love you. I love you.
David Sweet 5:30
And I was thinking this is kind of weird. I mean, of course, I love you. And I hear what you’re saying. But I think she also said, you don’t speak. So I didn’t speak. But anyway, I was very tired. So I didn’t feel like speaking.
David Sweet 5:49
Yeah, so then at that hospital, I imagined the nurse told me that I had a stroke, but then a stroke in France is an obvious save. So they probably mentioned David Sweet you hadn’t? Obviously, I no idea when obviously is. You know, this is I live in in France, where I know, I speak in my daily life. But there’s certain subjects where I don’t have the mastery of the vocabulary.
David Sweet 6:25
For example, medicine, or say, when I go car shop, I was stuck there, because I don’t know what the clutch is. And I cannot explain like what’s wrong with my car. But anyway, so some people told me, obviously, but I had no clue what that was.
David Sweet 6:44
So then I had to go back to the hospital, and there I was for a few more days, and the doctors and nurses told me, still not sure what this was. Then finally, my wife, she told me, Hey, David, you had a stroke.
Stress at work might have caused the strokeDavid Sweet 7:07
And I was very surprised by that, because I was thinking this is really weird, because first I’m very fit, you know, I run several times per week, I have low blood pressure, I don’t smoke, I drink moderately, so I’m thinking must be stressed, because at this point in time, it was quite stressful at my work.
David Sweet 7:35
We’re in the middle of implementation of some new accounting guidance, as we had to analyze many things, or ways of doing business at work. So there’s a lot of that. And then I had this normal, normal normal management issues.
David Sweet 7:59
I was at that point of time as the manager of the Europe, Middle East and, Africa team, responsible for revenue recognition, at my work and so I just had those kind of issues as well. But then, least in France, and maybe elsewhere, I don’t know how it was for you.
David Sweet 8:26
Here in France, following a stroke, they’ll do certain tests to try to determine why you had a stroke, for example, they’ll do an ultrasound on my neck to see if it come from the thyroid, I believe. And then one of the tests was I had to swallow basically a hose, let’s say a big kind of tube with a microphone in it.
David Sweet 8:56
And they listen to my heart, then following that exam, the doctor said, you have a leak in your mutual valve in your heart. And even though I was surprised about it, because I went to a cardiologist four examinations, but none of the cardiologists determined that I had that leak.
David Sweet 9:28
And then he mentioned that this is a likely cause of my stroke. And then a year later, yeah, I had to had the leak repaired. So I had open heart surgery where they stop your heart for about 40 minutes. Go in there and and repair the valve.
Bill Gasiamis 9:52
Wow. What a journey man. That’s a pretty big deal. You’ve gone through a heck of a lot in a short amount of time, and more than most people go through in a lifetime. And that’s what’s interesting about this whole process, there’s so many ways to get to the point of a stroke.
Bill Gasiamis 10:15
And a lot of the underlying causes often then need attending to as well. And then it’s a whole journey of getting through both the stroke, and then the heart surgery, and then the stroke recovery, then the heart recovery.
Bill Gasiamis 10:32
What I’m curious about, and then we’re going to talk about all those things that you had to go through. But what I’m curious about is, on the way you on the floor, in the cafeteria, when you were thinking the things that you were thinking about, Oh my gosh, I can’t feel my left side.
Bill Gasiamis 10:48
Oh, my gosh, I’m not going to be able to be active with my family. Was and? And was that really the? Were you that aware? And that really the first thing that came into your mind that it’s gonna mean all these things in the future?
David Sweet 11:07
Yeah, so I don’t know why I had that. Sinking, because upon upon exam, I didn’t know how to stroke reading. It just a thought that came to my mind, you know, and at first, I don’t know if that’s a dream dreaming that or there. I know, if you had dreams when you’re unconscious or not.
David Sweet 11:33
I know when your recent guests, you know, he was in a coma. And he? Yeah, he then made things go into his mind. But there was no, so at that point, I was walking between the buildings and my work, I worked for a large software company in France, and many, many buildings.
David Sweet 11:58
And, then, yeah, my colleague, he put his hand on my shoulder, and then I, sometimes I lay down, and, and he had actually some experience with strokes before or stroke patients before. So he knew that the better for me to lay down as opposed to standing up. And then talking to my colleagues later, I want my return to work.
David Sweet 12:29
They mentioned that. At that point in time, my speech was really jumbled when when I tried speaking, but I remember speaking, that that’s what they told me. And then, um, yeah, then I work in a big campus in France, about 4000 people, where we have a medical facility at work.
David Sweet 12:52
And so when the colleagues ran off into get a wheelchair, and the real meat to the doctor’s office at work, as to dinner, I woke up one time that woke up from a stroke, I see America being on the table and into a doctor’s office, and it was doctors, they’re standing around me.
David Sweet 13:14
And then the ambulance people came and then they had to go into the stash stretcher, then go to the ambulance.
Bill Gasiamis 13:21
Right. So you had a pretty rapid onset, and then you had care pretty quickly as well. You were cared for you managed to get there really rapidly and then transfer you immediately to the care of the paramedics.
One of the best decisions David Sweet ever made
David Sweet 13:38
Right. Yeah. So this is what I mentioned. You know, it was one of the best decisions of my life to have lunch with my colleagues that day. I mean, because on a normal day where as eating lunch by myself at my office.
David Sweet 13:51
I don’t know how many hours would have gone by before a colleague would’ve said, hey, something’s wrong. And that’s very fortunate because that I got to care immediately. And, you know, I had to go to two hospitals before they, you can remove that blood clot from my brain. As a result of that, I don’t have any physical symptoms like many of your guests have.
Intro 14:24
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like how long will it take to recover? Will I actually recover? What things should I avoid?
Intro 14:39
In case I make matters worse, and doctors will explain things that obviously, you’ve never had a stroke before. You probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery.
Intro 14:54
If you’re finding yourself in that situation. Stop worrying and head to recoveryafterstroke.com, where you can download a guide that will help you. It’s called seven questions to ask your doctor about your stroke.
Intro 15:08
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery, add to the website now, recoveryafterstroke.com and download the guide, it’s free.
David Sweet 15:27
And you have more physical symptoms than I have. You know, there’s my stroke was on my left side of my brain. And that gave me aphasia. And I’m still struggling with that a bit, as you’re probably hearing.
David Sweet 15:46
But you know, after two days in the hospital, the the three kind of worked with this stroke patients, she asked me to just stand up, and and then try walking a little bit. And so I walked by, she was holding my arm. And at that point of time, I was limping.
David Sweet 16:09
And she said, Okay, now you can walk so you can walk by yourself now. And so at that point, I was walking around the floor, and then but limping and also affected my writing. So it’s still even today, six years later, holding a pencil, pen or pencil and writing is more difficult than it was before.
David Sweet 16:34
I’ve had to now make sure the pen is in my hand correctly and, and write correctly. But yeah, unfortunately, fortunately, I got the care really right away.
David Sweet 16:47
And I understand like, they say, I heard that you begin to care within four hours, that’s really key. Because that way that not so many physical symptoms, find a stroke, and I did get the care within four hours, fortunately,
Bill Gasiamis 17:05
yeah, within four hours, they can administer TPA, usually when there’s a blood clot when a stroke is ischemic in nature, and then they’ll that’ll prevent a lot of the damage to the brain. And then it’ll support the healing of the brain a lot quicker.
Bill Gasiamis 17:25
But then there is areas that have been damaged and impacted. And most people do have to rehabilitate from something.
Bill Gasiamis 17:32
But I have interviewed a few stroke survivors who have had a stroke had TPA, literally within an hour, and then look completely, perfectly normal, but then they do suffer from fatigue and other symptoms that are associated with stroke, but because it was so rapid onset, and then they got treatment so quickly, there’s a bit of a disconnect in their understanding of how serious it was that they kind of feel like, Oh, well, I had this thing.
Bill Gasiamis 18:05
And then I went and got this thing. And then I was gone, and it was alive. And now I’m dealing with the aftermath of it. And I didn’t realize that it was going to be such a long journey. And I was going to be on such a path, and that I was going to be struggling with different things.
Bill Gasiamis 18:19
Because every other aspect of them appears to be fine. But once the brain has been tampered with, in some way, shape or form, that tends to be a bit of a a bumpy ride to to recovery. Now, that being said, How long did you spend in hospital for the first but to deal with the stroke and all the things that you had to overcome to get home?
David Sweet 18:48
Yeah, so as in that hospital for 11 days, the first hospital and then so then in France of these, when you’re in the hospital, you can go home for the weekend. If you’re not in intensive care.
David Sweet 19:05
Before I went home, we can end and the reason is because the medical staff in the hospital they’re also home for the weekend except for the doctors and so forth who are working in in the emergency ward and I intentionally words.
David Sweet 19:23
So when at home that weekend at that point in time, you know, so my father, he came over from the United States to France, follow him he didn’t learn that I had my stroke. And I was quite excited about that.
David Sweet 19:39
You know how my father here in France and and that weekend, I decided to get barbecue barbecue is something my father likes and something I like doing as well. And, and I decided to make barbecue and hamburgers. And so I got to a hamburger And then also made buttons.
David Sweet 20:03
And the reason is because buns that you buy in the store, here in France are not very good. So I make the buns. But then I realized, oh my god, it’s so difficult to understand the text in the recipe and then following the text. And, so I mean, for sure I made some mistakes, but the Okay, the buns turned out more or less. Okay.
Bill Gasiamis 20:25
So, what period of time after the stroke was that?
David Sweet 20:32
Just 11 days. Yeah, and I know, I know, it’s for you. So it’s so soon.
Bill Gasiamis 20:45
It’s so soon, I’m thinking what I would prefer David to have been doing on the 11th day was lying down and somebody was making the food for him. Was what I would have preferred that they brought the hamburger to you, instead of making every bit of the ingredients and then delivering a bunch of hamburger to them, but I understand what it meant to you to have him there. So I get it.
David Sweet 21:07
Yeah. But you know, it’s part of my nature. I love doing stuff. You know, like, when I’m a gardener, I love working in the garden. I’ve always been active, you know, and I like doing that, you know, and it’s part of me. And so. So yeah, home, making food, you know?
Bill Gasiamis 21:31
There’s the enjoyment part of that. How difficult was it? Did it bother you that you realize that you couldn’t particularly understand and read the recipe? How did you respond to becoming aware of that?
David Sweet 21:45
Oh, yeah. At that point. Okay, at that point, I felt, okay, this is, this is where it’s something that is difficult to understand each recipe. But that point, I was still convinced that I’d get better really quickly, you know, just like, some days.
David Sweet 22:09
And, you know, just following my stroke, you know, I think yeah, okay, I’ll take a month off of work month such at that point in time, I think in a month is a long time. And I think, okay, I rest, and I’ll be back at work, and I’ll be everything we had it was before.
David Sweet 22:27
But then I realized it’s a stroke is such a long project process. And, and even today, you know, six years later, I, I view myself now, compared to where I was a year ago, and as I differences are still improving my speech and my thinking and speaking at the same time, and so forth. That’s the beauty of it. But yeah, the recovery
Bill Gasiamis 22:56
continues, it continues forever. And it’s ongoing. And if you’re focusing on it, and you’re practicing, and you’re noticing your wins, there will be wins there. And it’s just some people will have a different path to recovery. But definitely, I’m noticing, I noticed all the times when things are better, different, I feel okay.
Bill Gasiamis 23:18
Or I have more days where I feel like I have less days where I don’t feel okay, more days where I don’t notice my deficits, less days where I am noticing them, you know, so it continues, it becomes for me, it’s become a lifestyle that I live that supports recovery.
Bill Gasiamis 23:34
So the whole lifestyle is about supporting recovery. And I would consider myself very recovered, even though I have these ongoing deficits on my left side. If people ask me, I’m like, Yeah, I’m recovered. Don’t worry about it, I’m over it, I’m past it.
Bill Gasiamis 23:53
Because I don’t think that I don’t think that the stroke is doing my issues or being I think kind of that part of it has resolved and whatever it left me with is separate from being unhealthy or unwell. So I feel really healthy. Although I’m leaving with this feeling in my left side and the deficits that I experienced I don’t feel unhealthy because of it. Does that make sense? I’ve got
Dealing with post stroke deficitsDavid Sweet 24:24
Yeah, it makes sense to me. But um, yeah, I understand what you’re going through it and and in a way Yeah, it’s like that for me, because you know, I still wake up and I feel like my light right leg is almost cramping up in my sleep, you know, several times per week and I contact you back that that before. It’s still to this day, several times per week and that this is now it’s it’s part of my life now. And
Bill Gasiamis 25:04
yeah, and it’s part of your life and it’s not impacting you in a way where you feel like you’re unwell because of it, you’re just, this is the thing that I have that I have to manage. What’s interesting about your leg getting stiff when you sleep, I experienced the same thing.
Bill Gasiamis 25:23
So some mornings, I wake up with a cramp, and it’s excruciating. And it’s just my left leg. And right happens after I stretch it. So you know, have you have the morning stretch after you wake up? If I do that, and I don’t forget, and I don’t remember, then my leg is going to seize up. And I’ll put myself into,
David Sweet 25:46
right, okay, yeah, that’s different than mine, because mine is when I’m still in bed. Just before waking up, you’re ready to put a timeout? Wait, wake up, you know, that’s when they will. Almost cramp. And Mike, my case is more when I’m not thinking about this. Well, that happens.
David Sweet 26:06
It happens more when I am dehydrated. dehydrated. So maybe that is a sign that I didn’t drink enough the day before. And so that’s when my late cramps up. That’s interesting that yours is different, is I thought it was I thought were you with caffeine at the same time. Exercises.
Bill Gasiamis 26:35
Yeah, I kind of make a cramp up. It’s weird. I don’t know how I do that. And sometimes, it’s too late after I’ve realized it’s too late. I’ve been a cramp. And then I’m trying to settle it down, and it won’t settle down. And I haven’t gotten out of bed yet. But it is in bed that it happens more than anywhere else.
Bill Gasiamis 26:52
And dehydration is a really important. I mean, it’s going to make you feel fatigued. It’s going to make your brain operate less optimally anyway. But then it definitely has an impact on on muscle cramps.
Bill Gasiamis 27:05
And I know Yeah, people with deficits on one side or the other, that often report muscle cramps and pain and stiffness and all the things that we associated with, you know, with deficits because of a stroke. So you’re so you’re you’re living in France, how long were you in France? Or this happened?
David Sweet 27:31
Right. So actually in France before it’s happened. It’s 19 years. So I moved to France in 1998. At that point in time, I was well from California, and it’s working in California. At the point when when I moved over, and I was working for a software company called Netscape is remember that that software company was the first software company that made Internet browsers.
David Sweet 28:03
And before Netscape came along, the Internet was kind of an academic thing existed, but there’s no easy way to access the internet. And then Netscape came along and open that internet up, open the Internet to people in everywhere in the world.
David Sweet 28:26
But I told my management, yes, I’d like to work overseas and eventually had the an opportunity for me to come to Paris. Because Paris was a European headquarters. And at that point, I didn’t speak French at all, I can say this. Thank you. Merci. Er. Hello, bonjour. But that’s, that’s it.
David Sweet 28:51
Then Fortunately, for me, or maybe, unfortunately, it depends on how you look at it. The the language spoken in the office with English, so then made it more difficult to learn French, because it’s speaking English all day, Reading, English documents, things like that.
David Sweet 29:11
But I still want to learn French. So I studied on my own hanging out with French people, like on the weekends. And then you gradually or the time I learned French.
Bill Gasiamis 29:26
So not too bad. The French people. We’ve had some time in France. I really enjoyed my time there. But I didn’t notice how difficult it is to communicate in French. And to try and have the correct accent and pronunciation of the words.
Bill Gasiamis 29:44
It seems to be very difficult to pretend like you’re, you’re talking French in that. If I was using Google Translate, for example, and I had a sentence that say, can you tell me how to get to the train station? Yeah, getting reading that in the French way. And then yeah, saying it out loud means nothing. It comes. Yeah. Strange.
David Sweet 30:10
So yeah, actually,
Stroke and aphasiaBill Gasiamis 30:12
I’m curious about your challenge with your aphasia. When you were in the process of recovering, and you’re interacting with people in French, and people in English, what was that? Like? Because did you notice aphasia was causing challenges for both languages? How was that working?
David Sweet 30:35
Yeah. Yeah, that’s a good, very good topic to talk about. Because for sure, it’s more difficult in French. Okay.
David Sweet 30:47
Follow my stroke, okay, it kind of went, my recovery went in waves, you know, right away, just, my wife came to visit me, but it’s still not first hospital, I could only speak one syllable words, you know, in English, you know, and not, I couldn’t speak French, basically, at all, you know, and then two syllable words, and that over time, the English came back, where I can speak fairly fluently.
David Sweet 31:15
So long as I wasn’t stressed, or something of that sort of, as long as I was relaxed, I can speak English quite well. But the French it was difficult, different story. And, and I’d be curious to hear what if you have other guests of yours, or people listening to this podcast, you are having an English mother town, and they had a stroke.
David Sweet 31:41
Living in a country where English isn’t a spoken language, I wonder if my experience is the same as theirs. So it was very much more difficult to speak French, in this case. And I could understand everything that the tummy.
David Sweet 31:59
So as long as I knew that vocab before, I mean, I didn’t understand that, obviously. But that was really the specific topic that I didn’t have the vocabulary for. But just on everyday things, it was very difficult. And so and so for example, in a hospital, is it difficult to, to get a point, get myself get my point across to the doctors and the staff there.
David Sweet 32:34
Also go into the store, there’s a difficult as well, like, you know, I remember one time, I had to go to the hardware store, and I need to get some special type of washer, you know, and you’re really screwing and you have a washer between the screws.
David Sweet 32:51
And so I I practice that before I went through this asked make sure I could pronounce what I need to say. And then of course, they say something like they asked me some questions today where I don’t I need to need to talk more and any describe more and more detail.
David Sweet 33:14
And then at the toll messes me up. So then I don’t know what it did. Anyway, they finally got your plan.
Bill Gasiamis 33:26
I’m gonna say this, they are going to say that and I’m gonna get a washer. And then Exactly, yeah. You said this. And then they said something else. And that was? How do you plan? So you hadn’t yet for that part of it?
David Sweet 33:38
Exactly. Yeah, exactly. And so that, so that’s more difficult. And then, actually, it was quite loose, lonely for a time, you know. You had in hospitals find my stroke. And, and then not be able to speak.
David Sweet 34:04
And that’s why I’m curious to hear from some of your guests, you know, if if the year are English speakers, and had a stroke in a country where you just didn’t have the spoken language, and at aphasia. How did you deal with that? And
Bill Gasiamis 34:21
yeah, wow, that was really difficult. I had a friend of mine who had a stroke, I think when they were in Vietnam with a family, okay, on a holiday, and they were from Australia. So when they were in Vietnam, and I was trying to deal with the hospital system, it was a mess.
Bill Gasiamis 34:37
I mean, they couldn’t deal with them because they didn’t have any form of being able to communicate and try and get the message across about a what was wrong and be when they were treating him they weren’t able to communicate back and explain to him what they’re treating him for and what the issues were.
Bill Gasiamis 34:53
So it was a real challenging time, amongst other challenges that they had to deal with, which is like how do you cope With all the stuff of stroke when you’re in a foreign country, how do you also try and get to communicate that and it was unsettling for them?
Bill Gasiamis 35:09
It was difficult for them to feel like they were going to be cared for. Because they didn’t understand the hospital system. And they’re not, it wasn’t the type of system that they were used to from back at home. So there was a whole bunch of issues around that.
Bill Gasiamis 35:24
And then, yeah, somehow they ended up getting back to Australia can’t remember the interview was quite a while ago, but it was one of the most, it remains, in my mind, for them has been one of the most traumatizing parts of the whole experience was being in a foreign country and trying to deal with. Yeah, non English speaking people.
David Sweet 35:47
Right? Yeah. In Vietnam, I mean, I’m happy to hear that your guests got the care that was needed. So I guess their strokes are quite common, I guess, in Vietnam as they are everywhere. Medical staff knows how to care for them.
Bill Gasiamis 36:11
No doubt about it, they’d know, they’d be equipped to deal with it. And they would know how to deal with it. And they would be helping a lot of people and they’re saving lives, obviously. The but they’ve hardly ever dealing with nausea, that’s coming, you know, stroke or whatever.
Bill Gasiamis 36:27
And then it adds further complication. But they managed to, they managed to get through it. But then, of course, at the same time, nobody knows how much that impacted on his deficits and how much. I mean, you can speculate about all those things, really, about what a difference it might have made.
Bill Gasiamis 36:49
But he was overseas. And that was the way that it was and they had to get the best. They had to do the best they could and all things considered. They did all right. You know, they, they got to deal with. They got to deal with it and got him help. And then eventually, he was sent back home, repatriated home.
Bill Gasiamis 37:09
I think, when he left for Australia, I don’t think he was in a very good state. I think it was quite unwell. Oh, yeah. He’s still really unwell. Right, and then finally got back to Australia, where he got where he was, I think admitted to Australian hospital. And then they took they took, they took over from there.
Bill Gasiamis 37:31
But I can’t imagine what it’s like. That’s why I was curious about the French situation. I remember how difficult it was for me when I was in France, trying to just communicate about the train station and those types, right. Yeah, I, I speak Greek. So I’m pretty fluent in Greek. And I know how I know how simple it is for me to go to Greece and interact with people over there. Because it’s no, no big deal.
Bill Gasiamis 37:58
But and, and it’s fun to go to a foreign country because I wasn’t born there. My parents are a Greek. And I learned Greek because of them. And it’s so fun to go to a foreign country and learn about them and live with them and get to experience them.
Bill Gasiamis 38:14
And also be able to communicate, it takes the experience to the next level. And then when you go to France. Yeah, I don’t understand anything. It’s so hard. And when you’re having a stroke, it’s even harder. But it’s good. It’s I’m glad that you were there for quite a number of years before then and then re enlist somehow embedded in the
Bill Gasiamis 38:38
in the system and you understood how things worked. And you were at least able to Yeah, okay, your needs perhaps. And Rebecca, what about your wife? And your kids? Were they French speakers or?
David Sweet 38:51
Yeah, exactly. So my wife is French. I met her in 2000. We got married in 2001. And our children in 2003, and two and five, they’re dual, French and American, but didn’t France our whole time that they’ve been alive. We got to the United States for visits that they stay in France.
David Sweet 39:15
I speak English at home so my kids can learn English and my daughter she responds to me in English, no accents at all. My son who now my team, he still responds to me in French, because he knows he knows I understand French. And he speaks with a bit of a French accents.
David Sweet 39:39
Different way when it’s in a hospital, it was for sure good that my wife was French. And so she could talk to the doctors and understand the system more than I understood the system. You know, even though I lived in France before I hadn’t medical issues before.
David Sweet 40:04
There are some things I never dealt with before. For example, the French Social Security, also my insurance for work. Getting money from that, you know, because I never I Okay, this is some found I have a signed a contract when I joined the company, but I think it just never happens to me, you know?
David Sweet 40:28
And so my wife is dealing with with those kinds of things following my stroke. And as that for sure that was good. I was gonna say, yeah,
Bill Gasiamis 40:47
yeah, that’s all right. So she supported? Of course, yeah. Another Yeah. Another good thing to come out of it. I mean, yeah. What’s, what’s interesting is that you’ve been in France for such a long time.
Bill Gasiamis 41:00
And that’s why I asked, and you still, even though you had been there for such a while, so navigating the system is still a difficult thing to do. How old were you when you went to France.
David Sweet 41:14
So when I went to France, I was 31 years old, yeah, 31 years old. And then I have as 50 years old when I had the stroke. And, but, you know, even though I had learned the language, in between times, still working at companies where the English is the official spoken language.
David Sweet 41:38
And again, this is really a lesson for me being a negative English speaker, because I can write correctly, can speak English correctly. And, and in that sense, I’m having an advantage over native French speakers, because who maybe sometimes don’t write correctly or speak correctly, and some people, some, I imagine two colleagues who didn’t speak English at all.
David Sweet 42:08
And so the French to the Netherlands, it is worse for me, if my learning French, because you know, I have so much opportunity to speak French, even though I’m living in France. In that case, during my working days, I’m speaking English. And then and then when I’m at home with my children, I’m speaking English as well.
David Sweet 42:30
And then, and then, but then it’s like, when they go to bed, then I can speak French to my wife. And then we go to the stores, those kinds of things. I could speak French. And then we good news with French people. I speak French there.
Bill Gasiamis 42:45
Yeah, I can see what you’re saying, basically, you’re embedded in an English environment most of the day. So it’s really easy to sort of stay in that space and stay in your comfort zone and not get out of your comfort zone, especially early on when you’ve just arrived and right when you want to get to work and be rational at work and communicate well with your fellow colleagues. Right.
Leading up to the open heart surgeryBill Gasiamis 43:13
I understand that. Yeah. Yeah. That’d be tough. Tell me about the time out. So it took you about a year to have the open heart surgery. So what was the lead up to that? Like, how did they prepare you for that? Because you’re still recovering from stroke, and aphasia and all that kind of stuff.
Bill Gasiamis 43:31
So what’s that process? Like? And how did you feel about the upcoming surgery?
David Sweet 43:38
Right? Okay. So, yeah, between my stroke, and my heart operation, it was quite a journey, let’s say. So following my stroke, went to the hospital, many identify the head, a leaky heart valve, they told me he, you probably need to have a heart operation sometime soon.
David Sweet 44:01
And that at that point, they mentioned to me that it probably wouldn’t be within six months following my stroke, because I guess my brain or something like that needs to calm down fulfilling my stroke before the dare operate on my heart heart.
David Sweet 44:17
And nevertheless, I thinking there’s more time to take off work. I don’t know how to deal with that. Because I didn’t know at that point in time. Well, first that would take 21 months to work returned to work and even there.
David Sweet 44:34
It took years and years and years for me to get better, but But nevertheless, at that point in time, I was thinking, This is crazy. But then, then, then I had a depression issue following a stroke. And I understand that many people have strokes had depression, but this totally caught me off guard guard and I’ve never had anything like this before.
David Sweet 45:05
And yeah, it’s really something. So I, about two months after my stroke, one day, I got to thinking, My children are growing up, they’re almost you teenagers now, or my son was already a teen teenager, and my daughter was 11 years old.
David Sweet 45:24
And they’re no longer as cuddly as they were before my daughter, no longer holding my hand, we were walking the streets and stuff like that. And then I got this thinking about that, and I think this is really sad, you know. I feel like they really missing out on them.
David Sweet 45:45
And my spending so much time at work is, is, is too bad, you know, it’s just too much time at work as opposed to time with them at home. But I got this thinking in my head. And then, and then I couldn’t sleep thinking about that.
David Sweet 46:03
And then, I think, because the lack of sleep, and because of thinking about this all the time, pretty soon, everything became sad, you know, just, you know, my father’s age and everything. And so it got to the point, I think because of the lack of sleep, sleep and and also thinking about this all the time.
David Sweet 46:25
A it became actually still suicidal, you know, I was thinking about killing myself at that time point in time. And even though I even though I had a loving thank family. I got to that point. And and then fortunately, I got some Yeah, cared for the French hospital system.
David Sweet 46:50
So then I had to go to psyche psychiatric hospital here in France. Again, everyone speaking French there. There was psychologists or who speak in English, unfortunately, but other doctors and stuff speaking French. And then I had to make a phasic speech to tell me what’s wrong with me.
David Sweet 47:12
But there are in those kinds of hospitals that did more of this give you the pills and stuff like that, that deal with your issue, as opposed to doctors really take the time to listen to you. But they’re, they put me on sleeping medicine, antidepressant, medicine and anxiety, essence medicine for me, and then got better quite quickly. And yeah, so then, yeah.
David Sweet 47:43
And then following that, then different chips make family and it’s like, it’s your childhood with them. And then then, a few months later about my heart. I went to the doctors and they say, Okay, you need to have this hot heart operation quite soon now.
David Sweet 48:04
And when did the heart surgeon he mentioned to me that you live, let’s say have this heart operation. And so we scheduled a heart operation in August that year, that August 2018. And it didn’t really scare me so much. Because I mean, I just hard operates.
David Sweet 48:30
I needed doctors, they work on people’s hearts every day. And and when France there’s really good medical care. So that it wasn’t it was it was for sure it was a bump in the road. That bump in the road, but it wasn’t that difficult. Was it metal metal a difficult for me.
Bill Gasiamis 48:53
Wow. That’s, that’s brilliant. I love it. It’s a pretty serious operation as well, right? Just this? Yeah. He says,
David Sweet 49:01
open up your chest. Yeah, and go in there and operate in the heart. But then, you know, there as well. My, my daughter, my wife came to visit me and I didn’t want my daughter to know that it hurt where they operated on so we decided to go walk into town today that day.
David Sweet 49:24
And even though it’s hurting and stuff like that, I pretend to know payment meals kind of dancing around better was hurt, thought hurting. And but that’s
Bill Gasiamis 49:37
just trying to protect her. Yeah, yeah, I understand. I understand. It’s interesting what you said about those thoughts that you went on. And so you started those thoughts and then the cycle of thoughts. You just couldn’t break it for when in time.
Bill Gasiamis 49:55
Made you think of other things now you said that you thought about your that age now that’s something that I do. Right? And I don’t know why. And I don’t. It’s something I’ve recently started doing. And I think about his age. And I think about that his ad. And then what comes?
Bill Gasiamis 50:15
What’s coming next, I think, the bloody time and it’s not something that doesn’t, it doesn’t get out of hand, the thinking of it doesn’t go out of hand. But I’m paying attention to my dad’s age and the fact that I used to see him a certain way. And now I see him in a different way is older. His Yeah, more frail. And, you know?
David Sweet 50:41
Yeah, exactly. I mean, it is if is this the first time you’re realizing that your father’s getting older, and sometimes they will die?
Bill Gasiamis 50:54
It is I, I, and I probably noticed that. And what’s interesting is my mom’s not that much younger than him. But I don’t have the same. I’m not sure if the word is concerns or worries about her that I have about him. And my dad, but saw him really confused and disoriented.
Bill Gasiamis 51:14
Just a few months ago, maybe maybe about maybe about a year ago, it was in summer, and I could tell that he had gone to do some stuff and a property that he has. And he hadn’t taken water with him. And he had looked dehydrated to me.
Bill Gasiamis 51:30
And I seemed really strange in what he was saying and what he was speaking. And of course, I picked up on it immediately. No thought, right? Yeah. Yeah, that a monitor this guy because I don’t know what, what’s wrong with him. And it turned out to be nothing.
Bill Gasiamis 51:45
It turned out to be that he was fatigued and dehydrated. And the other thing I think that caused causes me to think about my dad, as much as I do was that when I was in hospital the first time because I ended up in hospital three times.
Bill Gasiamis 52:04
The first time when he got the news, the Saturday morning that I was admitted to hospital.
Speaker 3 52:12
They left home and they were going to come and see me my mom and dad. And he was supposed to take some medication. And I think he talked about it, he didn’t eat. And it made him dizzy. And he felt at home and he ended up coming to the hospital in an ambulance.
Bill Gasiamis 52:29
Gosh. So I’m in the hospital, in a hospital bed, because they’ve just discovered a bleed in my brain. And, and now I’m getting the news that my parents have come to see me and it was just my mum. And I said, Well, it was Dad.
Bill Gasiamis 52:45
Dad’s downstairs, Oh, tell him to come up. So well, it’s not like that. He’s upstairs because it collapsed at home. And he hit his head and I couldn’t, I couldn’t get him up and I had to ring the ambulance. So he’s an emergency.
Bill Gasiamis 53:00
So that whole thing has kind of that really made me feel uncomfortable about his frailty that he’s becoming more and more frail. And that rain is what plays on my mind. And I might wake up some nights, I might wake up some nuts just to go to the toilet. And the damn thought will enter my head.
A link between a stroke and depression
Bill Gasiamis 53:25
And I won’t be able to get back to sleep. And I’m wide awake at 230. And then I have to get out of bed by seven o’clock. And then I haven’t slept since 230. And that is a new thing. That is something that never used to happen to me before.
Bill Gasiamis 53:42
But it right? It happens now weird stuff like that comes into my head and they’re strange loops. And I know that they’re strange. I know that it’s happening. And I try and tell myself to stop it. Right. But it just doesn’t. It just doesn’t.
David Sweet 53:57
Right. Yeah. Yeah. It’s strange. I mean. Yeah, I don’t know, it might with myself and yourself. Is that because of the stroke or not?
David Sweet 54:10
For myself, at least, when I was having a depression, I was aware that was depressed, you know, and so do some research on internet to see, is there a link between the stroke and the thoughts that are in my brain all the time, and I couldn’t get rid of the thoughts, you know, and I saw that, okay.
David Sweet 54:32
It’s quite common for stroke patients to get depressed, but I couldn’t really find something that really linked that to my, my depression I was having.
Bill Gasiamis 54:44
I think there’s very little studies and research done. To answer the question that you just asked is one of those things as a result of the stroke. I don’t think there’s a definitive way to know but, but it’s common.
Bill Gasiamis 55:00
And I think the statistic is that I think around 1/3 of stroke survivors experienced depression after the stroke. Now, yeah, you might wonder, well, is that because of something that happened before their stroke?
Bill Gasiamis 55:13
So is it ongoing issues related to things that I haven’t dealt with from the past is as a result of dealing with a new identity, or the loss of identity, or the challenges that stroke creates? I mean, there’s just so many things to consider.
Bill Gasiamis 55:30
But it is a fact that people who have had a stroke, about 30% of them or more reporting, that they get depressed, and you can completely understand that because they’re dealing with mortality, they’re dealing with what this means for me for the rest of my life, they’re dealing with losing some of independence, losing their hobbies, they’re not able to work.
Bill Gasiamis 55:58
I mean, it’s completely normal for somebody to feel bad about that stuff.
David Sweet 56:04
Yeah. Yeah. And also, at that point in time, when I was depressed, you know, how do you go to the hospital at that point? Several times, for a week for the rich education in the hospital. There’s people in world wheelchairs, people must worst, worse off than I was.
David Sweet 56:26
And I asked myself, you know, is this maybe the cause of my stress or my depression, it can be around these people? Because, for sure, that was, it was. That was not something that I was used to being around those people in wheelchairs and not able to talk walk and stuff like that. But I didn’t know that so is
Bill Gasiamis 56:58
emotionally taxing on you, as well as seeing that there’s a lot of people that are doing a tough as well as suffering from aftermath of a stroke.
Bill Gasiamis 57:07
Okay, well, that makes sense as well. There’s definitely an emotional side to feeling to having a depression or feeling like you’re depressed is definitely an emotional aspect. Right. And be triggered by many different things.
Bill Gasiamis 57:21
Yeah. Well, and your it seems like you got through it somehow. It seems like that medication. Yeah. Right. that cycle of thought.
David Sweet 57:31
Yeah, exactly. It did. And so for sure, the medications, so the sleeping medication, I was able to sleep. And then anti anxiety basically stopped that thought going around around around in my brain is stuff like that. Different eventually, you got better.
David Sweet 57:53
I could stop all this medicine and medications. And but it took a while. Unfortunately, too frustrating to unfortunately, but to to get off those medications. And, yeah. And
Bill Gasiamis 58:11
it’s a great outcome. So so then you eventually went back to work. It took us did you say it took you a couple of years to get back to work? Yeah. So
David Sweet 58:19
it’s 21.1 month to go back to work. So the number 20 ones seems to be a pertinent number for my stroke happened on the 21st. of April, as I’ve worked 21 months and went back to work on the 21st 21st of January 2019.
David Sweet 58:40
And, and I think in France, the law is that they have to you have a stroke, or something seriously, they have to keep your position open for you to go back into. But I told them that I didn’t feel up to managing a team of people anymore.
David Sweet 59:00
And so that I returned as an Nam, working in the corporate revenue recognition department department. And I’m doing things more were a I don’t need to speak so much to people. But nevertheless, when I went back to work, at that point in time, I realized going back to work that it was very difficult for me to think of something and speak at the same time.
David Sweet 59:30
And I’ve gotten better since then, for sure has gotten much, much better since then. But this caught me off guard because before going back to work at that point, in my daily life, I was quite comfortable with speaking English.
David Sweet 59:45
And then been trying to think about, let’s say the the policy or a national text and then talk about that at the same time. It’s very difficult But you know, yeah, that did that has become better over time.
Bill Gasiamis 1:00:09
And the the responsibility the list responsibilities made it easier for you.
David Sweet talks about the podcast and how it’s helped him
David Sweet 1:00:15
Yeah. Yeah. And also now I’m working just four days a week it for sure this is really great. Having a break during the week, I don’t work went work on Wednesdays.
David Sweet 1:00:26
So I just work on Monday, Tuesdays Thursday and Friday, and then had a mental break where I can do other things on Wednesday, for sure. It’s good. And
Bill Gasiamis 1:00:36
it’s a great strategy. Yeah,
David Sweet 1:00:38
yeah. And, you know, for example, now, I was 16. Now, I’m getting involved in another other kind of medical things that just, you know, for example, just several months after I arrived in France, I had a cancer.
David Sweet 1:00:55
And at that point, I didn’t speak French and the doctor to speak to me in French, and I didn’t understand anything they’re saying.
David Sweet 1:01:02
But at that point, I was single and so I mentioned told him tell myself that, okay, this cancer I had was very common cancer, for I trusted data, the till do what is needed to curate the nevertheless, that it was a difficult experience for me being alone in France had to go through chemotherapy and stuff like that.
David Sweet 1:01:29
And I thought, since then, someday, I’d like to volunteer, volunteer to be with English speaker is in that situation. And, and then recently, I heard about a cancer support group in France, for English speakers.
David Sweet 1:01:50
So now, I’m involved in that song. It’s on Wednesdays, Wednesdays, I’ll do some things for that group now. And then I told that group about my stroke as well. And so I so if, if, eventually, there’s a stroke patient in France, who is English speaker? I hope I can do something for them as well. Yeah.
Bill Gasiamis 1:02:14
I imagine there’s going to be a few of them are already there. That’s the hard part is finding other people when you’re going through there finding other people so you don’t feel alone. And yeah, even so great. But
David Sweet 1:02:27
your podcast is amazing. Talking to you and hearing your your stories. Yeah. It’s great.
Bill Gasiamis 1:02:36
I need it. I need it. Everyday. David, I mean, I’ve, I’ve, I’ve mentioned that a few times in the last few episodes. For me, the podcast is it’s so that I don’t feel alone. Like it’s still that important to me.
Bill Gasiamis 1:02:51
And I’ve done 250 episodes, and it’s not enough, I haven’t been able to fully get beyond that thing where nobody else around me, thankfully, and frustratingly doesn’t understand what I’m going through. It’s still a thing for 11 years later.
Bill Gasiamis 1:03:09
And yeah, if it wasn’t for the podcast, I don’t know what state I would be in, it’s just great that I can, I can make a difference to other people when they reach out. And at the same time, they’re making a difference to me. And we’re doing this journey together, I couldn’t do it alone. And even though I’m in Australia, and is I live in a city where there’s 5 million people,
Bill Gasiamis 1:03:36
it’s still hard to find where those people are, that you can connect with that want to talk about stuff, and they’re in different stages of recovery, right. So if they’re in the very early part of recovery, then it might be very difficult for us to interact.
Bill Gasiamis 1:03:52
If, if they’re younger than me, they might not relate to me, and they might not want to catch up with me. And that’s fine if they’re older than me the same thing. So I figured that if I do this online, the chances that people want to interact with me are going to increase and I have a larger pool of people to reach out to, and I’ll do my thing, and I’ll let the internet do its thing.
Bill Gasiamis 1:04:19
And that’s the beauty of the internet. It does its thing and it brings people like you to the podcast. And that’s the whole reason for it. You know, and I know that that I really, that is an amazing thing that I got out of stroke.
Bill Gasiamis 1:04:38
I got the ability to do things for other people were previously I was was still a dad and I still have that my wife and my kids and my family and that but I was really more selfish. It was about me.
Bill Gasiamis 1:04:52
And the stroke has made it about them other people and as at the same time I have, that’s why better making it about other people has made it better for me, where, where I thought being selfish was the way to go at the beginning, right, and now you’re seeing what benefits?
Bill Gasiamis 1:05:16
What are the benefits that you see with helping other people who had gone through cancer? In an English speaking how is that benefited? Well, how does that improve your life while it’s improving other people’s lives?
David Sweet 1:05:31
Right? I mean, for myself, it’s really, I feel like giving, giving something to them, I received the something in return, you know, and the point yes, in some, so working other days that week, but some days I hope to make when I retired, is to be with an English speaking person going through chemo therapy, and day in and day out.
David Sweet 1:06:03
And in with the with with them. But nevertheless, at this point, just making, like, for example, I’m doing some publicity for association. So visiting hospitals, and then the other hospitals about the association. And so we get a poster put up in hospitals. And that’s kind of thing I’m doing now.
David Sweet 1:06:28
And yeah, with other people who had gone through cancer, so the working in association with them, and it’s, we have that comment. And and it’s a good feeling, you know, do that stuff together,
Bill Gasiamis 1:06:46
understanding each other. You know, what you similar stories, you’ve been through similar things. You guys are now making a difference for other people. It’s, yeah, community, it’s the best thing.
Bill Gasiamis 1:06:57
It’s such an important part of recovery from any condition, whether it’s stroke or cancer or heart condition, and you don’t muck around you’ve had everything.
David Sweet 1:07:08
I know, my wife asked the question, what’s next? And I don’t know, but enough no more. Yeah. Who thinks is enough? Yeah.
Bill Gasiamis 1:07:20
Struggle lady. I imagine she’s putting up with everything that you’re thrown at her. Oh, my God. Yeah, yeah, exactly. How is she doing six years? Out? How is she feeling about this whole thing?
David Sweet 1:07:34
Yeah, so she says, I’m really given her some, I guess, motivation, or I can’t think of the correct word, but it’s, so she had breast cancer in 2012, I think. And I told her about my cancer stories. And I still told her that for me, I at that point in time, I said, this is like, I have the cancer, like a bad cold.
David Sweet 1:08:06
And I had to take my medicine and is done, you know, medicine was chemotherapy. And and I told her about that, and give her the courage to go through her case with radiation therapy. And and so it was very encouraging for her to hear my stories.
David Sweet 1:08:27
And yeah, and then you know, she’s she became a quite a question lady lady, because my medical issues you know, at some point students can really freaked out and then to be human in a very Christian I guess, Father Jesus find my stories that
Bill Gasiamis 1:08:51
encourage them to become more religious or more. Was she a non practicing Christian before that?
David Sweet 1:08:59
Yeah, exactly. So she as a child in same way as it same way as a child, we go to church on Sundays. And then as a young adult, we’re not going to church. Very nicely mean for some Easter, some Christmas and stuff like that.
David Sweet 1:09:15
And then um, and then. Yeah, and then and then it find some i Okay. I have quite a few medical history, but at some point in time, yes. She said, that’s enough. And then somehow she got to see Jesus or something like that and decide to follow him. And
Bill Gasiamis 1:09:43
conditions like this and going through tough times does deepen people’s faith. Some people have to have something to believe in. That’s beyond what we are going through. There’s got to be a greater story, a greater purpose, a greater reason to go on.
Bill Gasiamis 1:09:58
You know, there’s plenty of reasons to go On locally, but also, there’s got to be a greater purpose in life then. And there’s got to be more to it than just us. Now I am, I was raised as a Christian, but again, I used to go only when my parents dragged me and now right exactly Easter and Christmas.
Bill Gasiamis 1:10:17
So I’m not a deep. I’m not a practicing Christian to that extent that some people are. And I’ve kind of internalized God, I mentioned that on a couple of podcasts that I that I haven’t released yet that I’ve recorded. I’ve internalized God. So instead of having God outside of me, I’ve put God inside of me.
Bill Gasiamis 1:10:39
So that when I ask the question of God for guidance, I’m actually not asking an external being or something external of me. So that when it fails to give me the answers, I don’t feel like I’ve been let down. When I internalize God, and I go to, alright, what do I do now?
Bill Gasiamis 1:11:03
How do I overcome this situation that I’ve found myself in? I feel like what it does is allows me to come up with the answers, rather than externalize the request and go to some kind of external source for solutions.
Bill Gasiamis 1:11:21
And by internalizing God, when I describe myself as God, God’s within me or I am God, or God lives within me when I do that. It brings the whole faith into me, and I’m doing it with myself. And with that external thing, if it’s an if it’s a, if it’s a thing, or I can’t describe it, but Right, okay.
Bill Gasiamis 1:11:47
But that way I try to, I try to, it’s how I’ve deepened my faith by breathing it in internally and then trying to access it from in here. Right. I’m kind of doing it. Okay. Yes. I’m being guided by me and God at the same time to know, right,
David Sweet 1:12:09
okay. Yes. Okay. Yeah, if that works for you.
Bill Gasiamis 1:12:13
Yeah. That’s the thing, right? It’s beautiful. What you said is, if it works for you, that’s the beautiful part about it. And whatever works for your wife, awesome. And I write, if I asked some stroke survivors, you know, what’s the best thing that they got out of stroke?
Bill Gasiamis 1:12:28
They’ll say, Oh, it was definitely finding God again. Or Right, exactly. Who did you reach out to help to for help with the hard days? Oh, I was definitely god. Wow, man, whatever gets you through, I totally agree with it. And it took me some time to contemplate that topic again.
Bill Gasiamis 1:12:48
Religion, God, spirituality. It happened after this big dramatic episode in my life at 37. Yeah, up until then, I never considered it. I just did what I was told. When I, when I became an adult, I stopped doing what they were telling me, you know, and I didn’t go to church and I didn’t see it at all.
David Sweet 1:13:08
Yeah. For me, like, my faith has become stronger, stronger, because of my stroke. You know, same thing before. I noticed because of me, the kind of person I am or my kind of job that I do or whatever, I’m, for me, I just okay.
David Sweet 1:13:31
I see some things like, okay, for me, when I die, you leave a device out, and that’s, I won’t be eating anymore. But nevertheless, that’s the level. Nevertheless, some of your guests, for example, one of your recent guests, he saw Jesus that many of his comment, and then I think, Wow, this can be true and other stories out there.
David Sweet 1:13:57
That tell me there is life out there. So I believe that as well. So that’s I decide, okay, I’ve found Jesus. Because it’s likely likely your that it’s likely that is the way it’s still, you know, sometimes I think maybe when a diet lights are out, that’s it, you know, so
Bill Gasiamis 1:14:19
yeah, it’s plausible. It’s plausible that when we go it just lights out. But that’s that interview fascinated me as well. Right? Yeah. Tell everyone what that interview was that you were talking about. And he was having a stroke. And he was in hospital and he was in a coma. And he was walking through. Yeah.
Bill Gasiamis 1:14:43
It was Rafael De Leon. And he was episode 243. And right, he was imagining he was dreaming that he was walking for 21 days or something like that. Yeah. And his feet while he was lying down. Were becoming It calloused and they will. Yeah. Like he was walking barefoot.
David Sweet 1:15:04
Yeah, that’s amazing. That’s amazing. It was a great episode. Yeah, it was a great
Bill Gasiamis 1:15:10
story. And I, and it made me think again, and it made me feel like, alright, let’s not discount everything, I’m not going to just put everything out of my mind and say nothing is possible. I’m just going to accept that many things might be impossible, and I don’t know which ones are right.
Bill Gasiamis 1:15:27
It feels good to internalize God the way that I said, and to make God myself and to make me God. And and if it feels good, and it’s not doing harm, and it’s supporting me, and it’s helping me recover. Go for it. Absolutely. Do that. Just like your wife and many other people we’ve found God is serious illness. It Yeah, it does something. It supports healing. And that’s a great thing.
David Sweet 1:15:57
Right? Yeah. There’s one thing I wanted to ask you and ask your, your, your guests for the input on several years ago, I’m following my stroke, I met a man he had a brain injury, as you said, not it’s rare to stroke, but another kind of injury, he failed to say.
David Sweet 1:16:19
And then he was trying to do things that make his brain recover. And he got this idea of taking cold baths, put ice in a bath in going out for a few minutes. And then he told me about this guy, the Wim Hof Method and showing a book here,
Bill Gasiamis 1:16:40
I have that book.
David Sweet 1:16:42
Alright, you know, he had this book. And and so the Wim Hof Method, it combines breathing exercises, and taking a cold or a cold shower cold baths. And, and I tried this method falling, learning about that. And, and I was amazed by the results, you know, the breathing, probably the breathing, made it.
David Sweet 1:17:12
So, I, my speech recovered temporarily, temporarily, completely, you know, and so I remember going to my speech therapist, who I still go to once a week and I told her Hey, my speech is totally bettered, this guy is amazing, you know, but then eventually deteriorate deteriorated.
David Sweet 1:17:37
And so, anyway, just looking for other people’s experiences, if they blend the Wim Hof Method did the the benefit them and go back to otherwise before or not also on the Wim Hof Method, with red hot methods, on the websites and so forth. They don’t it is written I don’t recommend it for stroke patients.
David Sweet 1:18:08
And I talked to about this to my cardiologist and my neurologist, that this kind of doing this method. And both the neurologist and cardiologist said they didn’t see anything wrong with me. I also wrote to them, and they sent me something back.
David Sweet 1:18:30
And he mentioned that the warning is only precaution. And rather err on the side of caution that we don’t have specific scientific studies to support this.
Bill Gasiamis 1:18:46
Yeah, so it’s a complicated issue, and I probably not a good person to comment because I didn’t have the guts to do a cold shower. I cannot bring myself to put myself into a cold environment. I’ve never liked the cold.
Bill Gasiamis 1:19:02
And now even with my left side with my deficits, I’ve I’ve tried to mentally prepare myself and have a cold shower. I just cannot bring myself to do with the deficits. The left side is more sensitive to cold than the right side. And it hurts just feeling a cold breeze.
Bill Gasiamis 1:19:22
Just feeling a cold breeze on my left side hurts and Okay, yeah, imagine what it would be like if I got into a cold shower. Yeah. Now maybe I’m just playing in my head too much and making matters worse. But the breathing I believe the breathing has a lot of good outcomes because what does what it does is oxygenates the blood and the tissues of your body a lot more than our standard way of breathing.
Bill Gasiamis 1:19:54
So I think that what his what his big intention and eases to sort of get people experiencing what it’s like to be fully breathing, and to be oxygenating your body and how you can do that at your own at any time just by going into the process.
Bill Gasiamis 1:20:14
So I feel like what he’s trying to do is empower people, to show them how much they can influence their body in a positive way, simply by changing the way that they breathe. Now, with the cold stuff, I don’t get that I honestly, I just, I can’t get my head around it.
Bill Gasiamis 1:20:31
Right. And it’s because of my own beliefs about how I don’t like it’s one of the story. I’ve always told myself how I don’t like the
The benefits of cold showers and plungesDavid Sweet 1:20:42
Yeah, but one thing I, myself, I’ve gone beyond the kind of the reluctance to take a cold showers some nights. And it’s too, it makes me for sure happier, more energetic than before going into a cold shower.
David Sweet 1:21:04
For for they mentioned in a book, and yeah, on the website and so forth, that people have depression, the cold showers help them. And it makes them less depressed.
Bill Gasiamis 1:21:24
Yeah, yes, because it stimulates the release of certain neuro Prosit neuro neurotransmitters like dopamine and serotonin. And, and it creates, it puts the body into a state of shock. So that the body has to kind of reset itself and actually go into this sort of survival, survival mode.
Bill Gasiamis 1:21:45
And it doesn’t only for a temporary, it’s only temporary. And in that survival mode, the body really does a lot to support the well being of the organs and the rest of the body. So it has this reset, kind of it has this reset type of result.
David Sweet 1:22:06
Yeah, results.
Bill Gasiamis 1:22:07
Yeah, it has a kind of like a reset result in the body. And when you take the body to an extreme environment, the body just goes, Okay, well, let’s get going. And let’s make things work. And let’s give that person as much as they need to get out of this trouble that they’re finding themselves in.
Bill Gasiamis 1:22:26
And as a result of that, people feel the rush of the release of dopamine, serotonin, and all the other things that it does, it also converts your fat, your fat cells in a unique and different way to make to make them be more support supportive of your health rather than negatively. And it decreases inflammation in the body. So it causes the release of other chemicals that support an anti inflammatory response in the body.
Bill Gasiamis 1:23:04
So I kind of know what it does. I kind of hear lots of good work about it. Lots of good word about it. But I haven’t yet done it. I haven’t yet had the guts to jump into a cold shower or a plunge bath. It’s just Yeah, I just can’t think of anything worse.
Bill Gasiamis 1:23:24
But But one day, see, that’s the thing. I’m thinking about it in my head. One day, I’ve just got to do it and just get an experience. I know it’s not going to kill me. Right, but just I’m afraid of the cold on anions we
David Sweet 1:23:39
Okay, now, you did that had to get describing the benefits?
Bill Gasiamis 1:23:44
Yes. They’re just some of the benefits. I will ask the question. If anyone’s listening and watching this on YouTube, leave some comments below the video about your experience with cold plunges, especially if you’ve had a stroke. And I’ll also ask my Instagram followers and see what they have to say. I might get you involved in that conversation if you’re on Instagram.
David Sweet 1:24:15
Yes, I’m on Instagram. So yeah, I’ll look you up actually.
Bill Gasiamis 1:24:20
Yeah. All right. Do that. Follow me. And I’ll ask the question in the next couple of days. And we’ll see. If we get a response. I’m sure. There’s been a whole bunch of stroke survivors that follow me that have done it.
David Sweet 1:24:33
Okay. Wow. Okay. Fantastic to know.
Bill Gasiamis 1:24:36
We’ll get some feedback. But look, I really appreciate you reaching out and being on the podcast. Thank you so much for joining me and telling us your story. And I wish you well on your ongoing recovery. And yeah, congratulations on the work you’re doing in the cancer space.
David Sweet 1:24:56
Right. Well, thank you much Bill. And it’s a real pleasure to meet you on Zoom. And thank you very much.
Intro 1:25:05
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Intro 1:25:38
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Neck Trauma And Stroke – Suzanne Eykholt was involved in a motor vehicle collision that cause a carotid artery dissection that was initially described as a sprained neck.
Highlights:
00:44 Introduction
01:13 Neck trauma and stroke
05:02 The importance of getting immediate treatment
14:02 Life before the stroke
16:30 Early deficits she had to recover from
23:52 How the stroke has changed my life
29:52 Why she didn’t reach out for help after the stroke
43:38 Dealing with post-stroke fatigue
49:20 Knowing your limits
53:45 Dealing with sensory overload
1:00:05 The hardest thing about stroke
Transcript:
Suzzane Eykholt 0:00
I think the areas that I’m still working on improving, you know, I think that they’ve made me a more empathetic person, It’s made me more open, It’s made me less judgmental, It’s made me more caring, it’s made me more loving I think towards other people. I feel like I think sometimes after traumatic experiences people can harden and I felt like my heart just like turned to mush.
Intro 0:31
This is the recovery after stroke podcast. With Bill Gasiamis, helping you navigate recovery after stroke.
Introduction – Suzanne Eykholt
Bill Gasiamis 0:44
Hello, and welcome to episode 251. On the recovery after stroke podcast, my guest today is Suzanne Eykholt who was in a motor vehicle collision that caused a trauma to her neck, which was missed during the post accident medical checkup that later resulted in an ischemic stroke. Suzanne Eykholt, welcome to the podcast.
Suzzane Eykholt 1:07
Thank you for having me, Bill.
Bill Gasiamis 1:10
Thank you for being here. Tell me a little bit about what happened to you.
Neck trauma and strokeSuzzane Eykholt 1:13
So I had an ischemic stroke, a little less than a year ago. So the reason I had the stroke was because I was in a car accident. And the car accident caused some trauma to my neck. And I had actually gone to the emergency center after the car accident and they did a CT scan.
Suzzane Eykholt 1:37
And they didn’t find anything. They just said to come home and rest. They said I sprained my neck, and that I’d be pretty sore. But that was it. And then three days later, that’s when I had the stroke. And it was really intense. I mean, the car accident in itself was really intense. And then having the stroke three days later was a surprise. I didn’t see that coming. And it completely changed my life.
Bill Gasiamis 2:04
The you’re not the first person who’s told me this about collision. And then later on down the track, sometimes six months, sometimes a few months later, there’s a tear in one of the vertebral arteries.
Suzzane Eykholt 2:22
Mine was my carotid artery.
Bill Gasiamis 2:24
Okay, right. So it was a carotid artery dissection. Was it an internal dissection. They did it create a flap and therefore, they created a clot. And then that moved forward? Or is it a block at the site of the dissection?
Suzzane Eykholt 2:42
My understanding was the dissection caused a clot. So the clot was forming after the car accident, and then the clot like fully formed three days after the accident. And that’s when I had the ischemic stroke.
Bill Gasiamis 2:58
Okay, so the clot formed and then travelled up towards the head somewhere.
Suzzane Eykholt 3:04
So I was, I mean, my memory of when the actual stroke happened is really patchy. So I had the car accident, I was pretty sore afterwards. They said I had a spring in my neck. But that was it. I was honestly really frustrated about my car.
Suzzane Eykholt 3:23
But I wasn’t thinking that much about my health. I was like, Okay, I’m alive, great. I felt like I walked away with like, without a scratch. And I felt really lucky. And then, three days later, I had gone back to work that day, because I took the first two days off.
Suzzane Eykholt 3:40
And then I went back to work that day. And I was home. And I live with my roommate. And so she found me when I was having the stroke, and she called the ambulance. And then I went to the hospital, and then they perform surgery right away. So I felt like, it all happened so fast. I feel like one second I was fine. And then the next second I wasn’t.
Bill Gasiamis 4:05
It’s just amazing that I’m so pleased to hear that it all happened so fast. And that meant that you were in the right place at the right time, like you in health in a good place where they were going to support you care for you and make you feel better and make it possible for you to be here a year later. Nearly.
Suzzane Eykholt 4:24
It was actually, you know, the stroke happened when I was like mid conversation. We were talking she was in the room right next to me. And I went to my room to grab something. And it felt like it was just you know, when you power down a computer. That’s what it felt like in my brain.
Suzzane Eykholt 4:43
It just felt like everything was just shutting off. And then she found me and she didn’t know what was going on. I couldn’t move the right side of my body and I wasn’t talking. So she called the ambulance right away and she suspected it was a stroke right away too.
The importance of getting immediate treatmentSuzzane Eykholt 5:02
So the ambulance got there. And then they administered. I forget what it’s called.
Bill Gasiamis 5:08
TPA?
Suzzane Eykholt 5:09
Yes, they administered that at my house. They actually administered it right where I’m sitting right now, because I’m sitting on my bed, but they administered it at my house. And then they took me to the hospital, and the hospital is actually only 10 minutes from where I live. So I was really, really close to the hospital, and they got me in surgery right away. So I have a stent placed in my neck.
Bill Gasiamis 5:36
To support the tear inside your carotid arteries so that it strengthens it. And then you’ve got a clear passage so that blood can continue to flow. Oh, my gosh, it’s overwhelming to hear how quickly it all happened for you. And you went through it.
Bill Gasiamis 5:55
I’ve been through my own version. And my one was very long, drawn out extended three years brain surgery, like so many things happened over a long period of time, you had in a very short amount of time. And I imagine that well, like so much needed. I didn’t get it at all.
Suzzane Eykholt 6:17
Me neither I feel incredibly unlucky for having it. And then I feel incredibly lucky for the recovery and access to like health care that I had, I feel both where it’s like, on one hand, you know, it’s really unlikely that I had a stroke in the first place. But then it’s also really unlikely that I had all these things line up to where I could get care right away.
Suzzane Eykholt 6:39
So, you know, I feel really lucky that I’m here and then I’m alive. And that, you know, because I got care so quickly, and I got rushed to the hospital so quickly. You know, I think that that had such a big impact on my recovery because I had surgery right away. I hear a lot of stories where people you know, they don’t get help for like 12 hours or a day or multiple days.
Bill Gasiamis 7:02
Go roomie! High five to your roomie.
Suzzane Eykholt 7:08
I know I owe her my life literally.
Bill Gasiamis 7:12
Wow, you can actually say that in mean it to her. That’s fabulous.
Suzzane Eykholt 7:18
She’s my best friend too. We’ve been best friends since we were like 12 or 13 years old.
Bill Gasiamis 7:24
You chose well.
Suzzane Eykholt 7:26
I did, this wasn’t in our plan. But yeah.
Bill Gasiamis 7:29
Yeah. Wow. So and then you’re going through all this stuff, family and notifying people. How do you go from perfectly healthy today to I’ve got to tell people, I’ve had a stroke and I’m in hospital. Did you navigate that? Did that happen at the same time? Was your friend involved?
Suzzane Eykholt 7:51
That’s a great question. I didn’t navigate any of it because I wasn’t verbal for the first little bit after my stroke. And I couldn’t talk and I my brain wasn’t like processing what was happening. Like I couldn’t process it. I had a stroke for the first couple of days.
Suzzane Eykholt 8:10
People kept telling me and I kept asking again, what happened? I couldn’t like when I could start talking. I kept asking what happened. So when it happened, my best friend who I live with still currently. And I live with at the time of the stroke. So she’s close with my family, we grew up together.
Suzzane Eykholt 8:31
So she was in charge of notifying and contacting everyone. And I actually am living in Austin, Texas, and my family’s in Washington State. So they all got on a plane immediately. And they flew to Austin that same night. So they were there like within 24 hours of when I had the surgery. So my memories, me waking up and my parents and my sister being there.
Bill Gasiamis 8:59
When your brain was shutting down in that zone, did you have any concerns about yourself any fear? Any thoughts about what was happening? I know a lot of stroke survivors comment that they had no idea what was happening. They didn’t feel concerned or worried or anything like that after they woke up when all that stuff started to come back. How do you navigate that moment?
Suzzane Eykholt 9:31
It’s a good question. You know, I wish and I don’t wish that I remembered it more but it’s very patchy for me. Which is really confusing to kind of put the story together in my mind, but I remember you know, I just remember I was standing and I was gonna grab something from my room. I don’t remember what I was grabbing. And then I remember getting really dizzy.
Suzzane Eykholt 9:56
And I just remember falling over and then there was this big patch where I don’t have any memories. And then I remember patches have been in the ambulance. And I remember thinking I was dying. And that was terrifying. I felt like all my memories are also only on the cars, the right side of my body went offline. So the stroke was on the left side of my brain. So all of my first memories are on like the left side of the room, which is really interesting, too. But I just remember, like looking at the EMT that was in the ambulance, and I was like, I’m dead. I’m dying.
Bill Gasiamis 10:46
Yeah, that’s fine. Yeah.
Suzzane Eykholt 10:49
But then I got to the hospital. And I felt like, I have so few memories in the hospital. I feel like, I remember that I couldn’t talk. I remember, people were talking around me and rushing around me. And I remember lights. And I remember this flashing light from my CT scan that they did at the hospital.
Suzzane Eykholt 11:11
And I remember not knowing what was going on. I was terrified. I was really confused. But at the same time, like, I think, because I don’t remember so much. It was kind of like a blessing and a curse. Because I think that you know, it was it was really traumatic, and I don’t have a lot of memory of it.
Bill Gasiamis 11:36
Yeah, I was completely cognitively away the first time I presented the hospital with a blade in my head, and I knew exactly what was going on. And I was even acting like nothing was happening. And the doctors and nurses were concerned that I wasn’t staying in my bed, and that I was walking around and meeting people for coffee downstairs and all this stuff.
Bill Gasiamis 11:58
And the second time I was really spaced that felt like I was in a different dimension. Everything was just kind of I felt like I was moving through this dimension without knowing exactly where I was and how to interact with it. And it was just kind of like a floaty. Whoo, we kind of thing. It was strange. And I didn’t know how to interact with the people around me. Do you recall interacting with the people who came to visit you who flew in? And having them there? And did that? Was it comforting to have people around you? Do you know how you interacted with him?
Suzzane Eykholt 12:39
Yeah, I remember. When I first got to the hospital, it felt like everyone was talking around me. But I couldn’t understand what anyone was saying. Like I could tell that they were talking to me, I could tell it. They wanted me to say something. But I couldn’t talk and I didn’t understand what they were asking. I just felt that there was like commotion and like chaos around me.
Suzzane Eykholt 13:00
But I didn’t know it was going on. And then. But I remember my best friend being there. I remember knowing that she was there. And I remember knowing who she was. And then I remember waking up at some point, and my parents were there. And I think I I just started crying when I saw them because it was just like, I was so scared. I didn’t know it was happening to me and I couldn’t move the right side of my body.
Suzzane Eykholt 13:31
And I just I was so scared. And I couldn’t talk then either. I think all I said was hi because that was like the speech that I could form. And, but I was comforted that they were there. You know, I remember I felt safe when they were there. But I also was like, Oh, something really bad happened for them to be here for them to be in another state and for me to wake up at a hospital. Like I knew something was really really bad but I didn’t know what happened.
Life before the stroke for Suzzane Eykholt
Bill Gasiamis 14:02
What stage of life were you in a lot of young people will tell me about having a stroke and they’re in the middle of something major usually it’s university or something vehicle. Even something minor even moving out and living on your own with a roomie they’re all big time. times in our lives. No one’s really going through a I wasn’t doing much. There wasn’t really anything happening. What stage of life were you in?
Suzzane Eykholt 14:28
Yeah, well, I graduated college a few years ago, kind of early on in the pandemic. And I started working full time in Washington state for a while. And I felt like I was just burnt out. I was kind of at a dead end job that I really liked my coworkers but I wasn’t really using my degree in the way that I wanted to. But I did I really enjoyed my job and I wanted to change so, I had recently moved to Austin, Texas right before the stroke.
Suzzane Eykholt 15:02
I moved in June of 2022. And I had my stroke in August. So I had just moved to a new city. I didn’t really know that many people. You know, I had my best friend that was here. And I knew a couple people, my coworkers, but I didn’t have a support system here yet. And yeah, it was really scary, like doing it away from, you know, home and having it happen away from home because I didn’t have anything set up here yet.
Suzzane Eykholt 15:34
I felt like I was, I felt like when I first moved here, I wanted just to be like young and new city. And I, I started working when I moved here. And so I just felt like I was getting into the groove of things. I was working. I was starting to meet people. I was starting to make friends. I was starting to like, explore a new city, and then just like, bam, that happened.
Bill Gasiamis 15:54
Yeah. How, long did you end up in hospital? Well,
Suzzane Eykholt 15:58
I was in the ICU for five days. And then I was in. Like, I was at the hospital for another two days. And then I was transferred to an inpatient rehab center.
Bill Gasiamis 16:13
What? What was that? Like I interrupted, you finish what you were saying?
Suzzane Eykholt 16:19
Oh, and then I went to an inpatient rehab center. And then I did outpatient rehab for a really long time.
Bill Gasiamis 16:25
Yeah. What deficits were you dealing with that you had to recover from?
Early deficits Suzzane Eykholt had to recover fromSuzzane Eykholt 16:30
Early on? Well, things were changing so quickly. So early on, I couldn’t move the right side of my body. Everything was I couldn’t feel anything. And I was talking at first, but it was just, it was really small sentences, I was getting really confused. I felt like my processing my processing, still I feel like I’m struggling with but I felt like I couldn’t process things, my memory was really affected.
Suzzane Eykholt 17:02
The stroke was located on the left side of my brain. So they said that the parts of my brain that dealt with language, and fine motor control, were affected. So I had to do a lot of physical therapy, and a lot of occupational therapy and speech therapy. So when I was in the hospital, I kind of started to save some words.
Suzzane Eykholt 17:31
And I was able to kind of regain some of the feeling in my body. But once I got to the inpatient rehab center, that’s when I really like worked on like, walking again, and moving around again, and trying to hold a pencil again, and like, sign my name again. And just like all those things that you never think you’re going to have to relearn.
Intro 17:55
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like, how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, doctors will explain things that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 18:19
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recovery after stroke.com where you can download a guide that will help you it’s called seven questions to ask your doctor about your stroke.
Intro 18:39
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition. They’ll help you take a more active role in your recovery. Head to the website now, recoveryafterstroke.com and download the guide. It’s free.
Bill Gasiamis 18:58
Yeah, you’re right handed. Obviously.
Suzzane Eykholt 19:01
I’m right handed.
Bill Gasiamis 19:04
That would be interesting. You’re young, 25 years young. So you’ve got a lot of things going for you when people are young, and they have stroke, they’ve got a lot more things going for them than if you were older, for example, in your seven years or whatever, there’s less potential for recovery, apparently, which is something that I hear that I don’t really believe in any way that I tend not to like to say to people.
Bill Gasiamis 19:29
But you’re also in this phase where your identity is what it is, and you’re just shifting and changing your identity because you have moved from home. You move to another state of moving into a place with a friend. You know, there’s all these things that you’re doing.
Bill Gasiamis 19:48
You’re already going through a lot of upheaval changes and that type of thing. And now you’re dealing with being in another state as well as the changes that are caused by this stroke or thing that you haven’t really you went up for that part of it you weren’t interested in, going down that part of it.
Suzzane Eykholt 20:08
No, I wasn’t.
Bill Gasiamis 20:10
How are you reflecting on yourself? And how is your identity being impacted when you’ve moved into that phase with that with that, oh, my gosh, I’ve got to learn how to write again. And I’ve got to learn how to walk again, and all those things. How do you comprehend that?
Suzzane Eykholt 20:29
I mean, it was terrifying. I think I didn’t know what my future was gonna look like at that point. Because like, previously, I’d been fully independent. And I, you know, could move around, and I could drive and I could go to work. And I had a really like, relatively, “normal life”.
Suzzane Eykholt 20:52
But after the stroke, when it first happened, I didn’t know what my future was going to look like, I didn’t know if I was going to be able to work full time again, I didn’t know if I was going to be able to drive again, I didn’t know if I was going to need, like, at home care for a long time, or indefinitely, I just didn’t know what that was going to be like. I was really like fortunate though, my family, they flew down immediately after it happened.
Suzzane Eykholt 21:24
But then, even after the immediate stay in the hospital, they were by my side, like, my mom would fly down. And then she would go back, and then my dad would fly down. And then he would go back, and then my sister would fly down. And then I would have friends that would take care of me.
Suzzane Eykholt 21:39
And my best friend, who I live with and who found me when this happened, like she stepped in so much as my caretaker. And I had an outpatient care team that helped me too. So I was really fortunate, I had a lot of help, but it was still scary, just not knowing. You know, like, I had this idea of what my life was going to look like before the stroke. And all of a sudden, none of that was certain.
Bill Gasiamis 22:08
Yeah, stroke tends to do that, you’re going along perfectly fine, one day, and then you’re dealing with the most dramatic upheaval, the next day, and then from then on. And even though, you know, you’re brave, I’m gonna say it’s brave, because I’ve never done it before, you’re brave, and you left your home and you went to another state and you set up shop again, you know, without any resources, of local knowledge or anything like that.
Bill Gasiamis 22:41
You’ve just gone blind into this new way of doing things. You have a certain amount of skills to do that don’t you? You know, how to interact with people, you know, how to get a job, you know how to pay a bill, you know how to do all the things that you need to do to sort of stay on your feet, you know that you’ve got that.
Bill Gasiamis 23:04
But then you’ve got to deal with stroke recovery. And you’ve never done that before, you don’t know how to do any of that stuff. It’s foreign to you. You might have heard about the term stroke. But you may not actually know what it means. And even though you’ve seen somebody who’s had a stroke, you don’t really know what they’re going through, you’ve got no idea.
Bill Gasiamis 23:23
So how did you go about discovering? How do you do that? How do you transition into I’ve got to recover from something I’ve got no idea about, and I’ve never heard about and I am unaware of, other than the fact that I’m living in it. How do you do it internally, I know that other people are helping you, but how did you grapple with it?
How the stroke has changed life for Suzzane EykholtSuzzane Eykholt 23:52
I mean, it was terrifying. And I had questions about everything the whole time, I was going through it, like, you know, where I was just like, I’m not strong enough to do this. Like, I felt really sorry for myself for a really long time. You know, and I would just like, I wanted to just, like, throw in the towel and be like, That’s it. I’m done. Like, you know, because everything that I was facing at the time, it just didn’t seem I feel really lucky because right now, I feel like I’ve made a really good recovery.
Suzzane Eykholt 24:28
I definitely am not 100% back to where I was before, but, you know, I’ve been able to gain a lot of my independence back, but early on in the stroke like that just wasn’t a possibility. And that was terrifying. I think I don’t know how to say this because I think that the stroke did change my life for the better in some ways, though, because I think I created a new meaning on my life afterwards.
Suzzane Eykholt 24:57
You know, I think my relationship with my family I got a lot closer. I felt like before the stroke, i There were so many things that were just like, superficial that didn’t matter that I was so wrapped up in or just, you know, I think I was just kind of lost before this all happened and I definitely was lost when it happened definitely didn’t help. But I think because of the nature of stress, you have to rebuild your life. And I’m proud of how I’ve rebuilt mine.
Bill Gasiamis 25:31
Yeah, I would be too. And you’ve said something that a lot of stroke survivors say. But what’s interesting is I said that at 37 that before my life. Before stroke my life was a little bit weird, strange, different, but it’s actually normal. It’s the way most people go about their life, I can reflect on it now, because I’ve had this kind of, we’ll call it. My gosh, I don’t even know what the word is. But I think what I’ll call it is growth, or I call it growth, post traumatic growth maybe that’s better.
Bill Gasiamis 26:09
And before that, I hadn’t had any experiences that were my experiences physically happening to me, that made me have to dig deep and find other ways forward. So I just went about doing things the way that I used to, and it was the way most people did it. And I thought it was okay, and I thought it was serving me well, but it really wasn’t 25 to have that insight, I think that’s an amazing insight to have.
Bill Gasiamis 26:39
Because now that I’m 48 I reflect back on when I was 25. And I don’t think that even though you know, 25, I didn’t know as much as I know now and I wasn’t as aware. as knowledgeable as I am now. I didn’t know if I was that aware, aware enough to be able to make the distinction that you have made, which is I was focusing on superficial things. Now I know what’s important. I was focusing on all these things that didn’t matter, now I know what matters.
Suzzane Eykholt 27:14
I don’t think I would have gotten there unless this happened. I think that that’s the nature of like, when things happen that are so unexpected, and traumatic. You know, I think it just, like fundamentally it kind of tears everything down. And you kind of have this, you know, I felt like even before the stroke, I definitely struggled with my mental health.
Suzzane Eykholt 27:44
And I wasn’t always like, I didn’t always have the most like healthy relationship with substances. And then after the stroke, it was just, I was so clearly not okay, that I felt like I had to be so vulnerable, I had to ask for so much help. And I, you know, I actually had to, like address a lot of things that I didn’t address like pre stroke that I had just been putting off and like numbing for years.
Suzzane Eykholt 28:12
But it was all of a sudden, like, you know, I just it felt like it was like a scorched earth. And I felt like there was just there was myself before the stroke. And then there was myself now and I just like there wasn’t any other option. Like I couldn’t go back to that version of myself, or that version of me wasn’t there anymore.
Bill Gasiamis 28:32
What a blessing.
Suzzane Eykholt 28:33
Yeah, I mean, I think I’ve created meaning from the experience. I wouldn’t wish it on anyone. But you know, I’m grateful to be here.
Bill Gasiamis 28:44
Yeah, I wouldn’t wish it anyone either. But if you’re gonna get such a good thing out of a terrible situation, then bloody hell, why not? And of course, I never want to see anyone and well don’t get me wrong. That’s not it. It’s just that that ability to shift your perspective is never going I mean, it’s exactly what I said it’s scorched earth. What a start, like fresh slate everything new rebuild, however you want.
Bill Gasiamis 29:18
Yeah, sure, you’re going to take some of your old life into that new version. But you have really the opportunity to just let everything that didn’t serve you go. And I love what you said about I love what you said about what I got out of what you said about your mental health. You were using substances to numb it right? And then you had to deal with it. Do you feel like the reason that you had had substances in your life and you had mental health issues? Was because you didn’t reach out for the help that all you had to do was reach out for?
Why Suzzane Eykholt didn’t reach out for help after the stroke
Suzzane Eykholt 29:51
Most likely. I mean, I think there was a variety of reasons but definitely because of my pride. You know, I think I just felt like it was Ever bad enough or that like, because I was still going to work or because I was still, you know, like functional that, like, I didn’t need help. And I was just kind of like living this like, muted version of my life where, you know, I wasn’t really happy or fulfilled, but I was just like getting by.
Suzzane Eykholt 30:20
So it felt like I never really like needed to. I mean, I sought out like therapy before the stroke, which ended up being such a huge resource after the stroke. I feel like I couldn’t have gotten through this without, you know, all of those resources. But yeah, there was just a sense where it was like, I couldn’t pretend that I was okay.
Bill Gasiamis 30:45
Because you definitely would. Yeah. I love that. That was me, as well, I got to that point where everything that I was doing before stripe was kind of tending to my challenges, but not really solving them. And I think what was lacking was my taking responsibility for the solution. So I was going to counseling, but I was kind of making it their responsibility to make me better.
Suzzane Eykholt 31:09
Yeah, I was doing it. So like, half assed. I don’t know if I can swear on this. But yeah, I wasn’t really like fully invested in it. And I, you know, it didn’t take it that seriously before this. And also, when I was, I’m 26. Now, but when I was 25, right before it happened. In some ways, I felt invincible.
Suzzane Eykholt 31:30
I felt like the things that we’re doing, were never going to catch up to me in terms of like, how much I was drinking, or just like, I just never thought of the impacts of it. Which is so naive to say, but I feel like a lot of people that are younger feel that way. And then something with their health happens. And it’s like, oh, I don’t want that life that I had before.
Bill Gasiamis 31:55
Yeah, look, I’m 48. But 25 was only a couple of blinks of the eye away. It was, it’s that quick. I mean, you just get to 48. And you look back and you go, Oh, my gosh, I was 25 Just two blinks ago. You know, like, It’s ridiculous how quickly you get to 48. Now, there’s a lot that happens in between 25 and 48. So it’s not like you haven’t got a lot of additional stuff that’s occurred. But time just seems to just go right. So when you’re saying when I was 25. And then I’m 26. Even there feels like just a moment. Like let’s events. It’s a bit a quicker moment. But
Suzzane Eykholt 32:35
yeah, this has been the fastest and longest year of my life. Yeah, right.
Bill Gasiamis 32:39
So it’s a time distorts in weird ways, and changes. And the fastest because all of a sudden, you’re a year out of what happened. And that’s like, oh my gosh, I’ve made it a year out. But then it’s like, oh, my gosh, that was like, just a year ago.
Suzzane Eykholt 32:56
Yeah, yeah. I mean, I don’t know, even now like, I still don’t really know what my future looks like post stroke. I feel like I still in very much like active recovery in a lot of ways. But I have been really grateful. I’ve gotten back to work recently. So I’m working again. And I have recently started driving again, which was huge for me.
Suzzane Eykholt 33:24
That was a big goal after everything, so yeah, I think it’s, I still have so many questions, I still don’t know what I’m doing. I still have like, really bad days where I just, I think sometimes I feel broken because of what happened. And then other times, I’m really proud of myself, but it’s just, it’s so many highs and lows.
Bill Gasiamis 33:48
Yeah, I love that term broken. So some people are broken from stroke, they are typically specifically in a spot broken, it just depends on how you want to use that if you want to use that as an analogy that’s going to support you or discourage you. And if you’re using it as a discouragement, then I would refrain from using that kind of language, right.
Bill Gasiamis 34:10
But it’s kind of accurate in a way because there’s something missing now, that’s something missing. That’s what makes you unique. In my mind, now I have the ability to interact with people from all around the world at every single age stuff that you and I would never have had in common before. No reason for us to other than that you’re an amazing person and a great guy.
And we would chat because we’re just good people, right? Other than that, we would not really have any reason to get together and interact. But here we are. And I think that’s kind of our our injuries are what has given us this insight into this other way of doing life. And that is something that I am grateful for, and that part that’s broken if it wasn’t broken wouldn’t have allowed me to interact this way with 250 other stroke survivors around the world since the podcast started.
So it just depends on when you’re using those words, how you’re using them, and how you’re making them, impact you. And if they’re, and I use it as a way to empower me to say, okay, that little bit that’s missing makes it possible for me to have really meaningful and deep conversations with other people that are going through the same thing. And what I’m doing is making a difference to them. And they’re making a difference to me by chatting to me.
And together, we’re gonna get through this. But we’re also going to bring awareness, I suppose, or, or accept the down days as being part of the life of any person, quote, unquote, normal or not. Because even before your stroke, you had really bad days that you couldn’t get up, and you were even doing it to yourself, right, where you were drinking too much. And then you’d have to deal with a hangover the next day. We do that to ourselves, regardless of whether or not we’ve had a stroke. So you’re just doing now your, quote, unquote, bad days is just happening through a different source or cause or that makes sense?
Suzzane Eykholt 36:26
Yeah, I think it’s interesting. Like I think I’m trying to think how to word this. I think, the areas that I’m still working on improving. You know, I think that they’ve made me a more empathetic person. It’s made me more open. It’s made me less judgmental, it’s made me more caring. It’s made me more loving, I think, towards other people. I feel like, I think sometimes after traumatic experiences, people can harden. And I felt like my heart just like turned to mush. Like, I felt so emotional. I felt like I couldn’t. Yeah, I didn’t, I didn’t. I didn’t expect to feel that way. To everything around me, you know, it just felt like, yeah, everything was so intense.
Bill Gasiamis 37:19
You can’t ignore it anymore. You could have put it on the shelf before ignore it, pretend it wasn’t really talking to you. It wasn’t giving you any feedback, you know, you could consciously block out what the heart was saying and what it was doing. Whereas now, the head is offline. So the hearts going, huh, here’s my opportunity. I’m coming up, and I’m going to tell you what you needed to hear baby.
Suzzane Eykholt 37:42
Yeah. And I was also like, you know, I really had to, like, learn how to sit with the sadness and the grief of having a stroke and what that you know, meant for me at the time, but I think you can’t like you can’t selectively numb emotion emotions, like you can’t shut off grief without also shutting off like joy and love in your life. So I think for a while I just been like, doing that I just been shutting it off, just kind of going about my day to day. And then after this happened, like I finally had to process a lot of the sadness from the stroke, but also from stuff that happened prior. And I think it allowed me to also like, feel joy in my life in a deeper sense, I feel like I have a different appreciation for things. Now.
Bill Gasiamis 38:31
That’s probably one of the most profound statements I’ve heard in all the podcast interviews that I’ve done. That’s the statement that you made, that you can’t just independently shut off different emotions and not impact other ones.
Suzzane Eykholt 38:47
I heard it on I heard it somewhere. I didn’t create it myself.
Bill Gasiamis 38:50
That’s okay. Everything we’ve ever said, we’ve heard somewhere else, it’s all good. But it’s just a profound statement that you’ve made. I completely agree with that. Because that’s what a lot of people do, is they might have an emotional, hurt or pain or suffering from the rest from parts of their life that is in the past. And what they do is they try to compartmentalize it, put it aside, try and push it away instead of dealing with it.
And then it takes away everything else from their life. And it makes them unhappy. And it makes them unable to experience joy and happiness and all these other things. Because joy and happiness is an emotion of the heart as well. It’s if you can’t access if you if you put a wall around your heart, well then you can’t access all the other stuff that’s in there that’s going to make life worth living.
And that’s kind of that leads to one of my things that I say forever, which is that stroke recovery is a three pronged approach. It’s a head, heart and and physical recovery. You have to do the emotional work. You have to do this psychological work and you have to do the physical work. And and do you feel now that you have this ability to understand that you’ve got to attend to your emotions, that that’s supporting your stroke recovery, your physical recovery and your mental recovery?
Suzzane Eykholt 40:19
Absolutely, yeah. I mean, I feel like I feel like without, like, tending to, like the emotional recovery, you know, it just felt like I was just like, still living in that moment of fear when everything happened. You know, because I, sorry, I lost my train of thought.
Bill Gasiamis 40:46
I was asking about how tending to your emotional recovery and being able to go there has that helped you with your physical and your mental recovery after the stroke?
Suzzane Eykholt 40:59
Yeah, 100%. You know, I think that once I was able to start like processing what had happened, I was able to, I think, put the energy that I was putting into just like, just trying to get by, I was able to put that energy back into my recovery, whether it was like a physical aspect or like cognitive aspect, I felt like on the physical side of it, I was pretty fortunate to not have that many physical deficits after the stroke, but I had a lot of cognitive things that I was really struggling with, like my ability to use language, and writing and reading. And I felt like that was really hard. And I, in some ways, like, I felt like at times, I was only focusing on one, but I wasn’t being that successful at it. And it wasn’t until I would like, look at all three aspects together that I was able to see improvement.
Bill Gasiamis 42:06
Yeah, it’s really important to focus on your wins and see what you’ve done. Either, even if it’s like minor, because it’s uplifting and helps you feel better about yourself. And it just shows there is progress. And that you’re getting to the other side, whatever the other side is, or wherever it is, and whatever it looks like. But I think movement in any direction, kind of forward, whether you have to take a back movement, or a side movement, all movement, and that’s really the key here is this the keep going and every bump as it comes along.
Suzzane Eykholt 42:44
It definitely hasn’t been linear. I feel like there’s some days where I have some symptoms that are like, they’re worse than others. Like if I get really tired, I noticed that things kind of come back and resurface. Or if I’m really fatigued, or like after I exert myself too much. It’s like, it’s just not linear. For me, it’s been, you know, where it’s like, I’ll have a really good day, and then I’ll have, you know, a day where I’m not able to do that. Or I have to take a break. Yeah, I feel like the fatigue has been really hard.
Bill Gasiamis 43:22
When do you notice the fatigue gets worse? Have you seen a pattern that kind of, you’ll become aware of? And then if so, are you starting to get in front of that to know what to do before the fatigue kicks in?
Dealing with post-stroke fatigueSuzzane Eykholt 43:36
I felt like going at first, when I first got home from the inpatient center, everything was so exhausting. I remember like taking a shower would be exhausting. And I would want to take a nap afterwards. Or like just basic self care tasks were really exhausting. Or like making myself a meal was really exhausting.
Suzzane Eykholt 44:04
Going to the grocery store was really exhausting. And then that started to get a little bit more manageable. And then things kind of like I was able to like increase my tolerance for things. But going back to work was the biggest challenge for me. I felt like I wasn’t able to. I needed a lot more rest than I think I was able to get so when I had to go back to work. I went back to work full time.
Suzzane Eykholt 44:36
I wish I had gone back part time and then increased to full time. But I didn’t have that option because of my health insurance. And I really wish that I’d had the option to go part time and then full time because just jumping into full time. I was so exhausted. I feel like after work I wouldn’t be able to talk to anyone. I would just like sleep.
Bill Gasiamis 44:59
Yeah, that’s a common thing that happens, I’m going to say, I’m going to use the word mistake. But don’t take it a bad way. Mistake is, you’ve given it one take. And then you have to do another take. And I did the same thing. I went back to work full time. But I never, I didn’t go back to my work. So I had a property maintenance business.
Bill Gasiamis 45:26
And that fell by the wayside, and it was kind of bubbling away, but I couldn’t really do any work. So I just walked away from everybody, my clients, and everybody, and I just said, Look, I’m done for now. And then I went and worked in an office job. And I hadn’t done an office job for many, many years. And I didn’t realize what an impact monitors noise, people around me lighting, traveling to work and back, I didn’t realize what an impact that would have on me.
Bill Gasiamis 45:55
And I was wasted. And I wasn’t useful even at work. And only reason I stayed there was because I had a friend of mine, who gave me the job. He was the general manager there who supported me. But nobody else understood why I was so flaky. And even though they knew or had a stroke, they couldn’t understand how it was so unproductive.
Suzzane Eykholt 46:21
Yeah, I felt like, so a little background about what I do for work. I am a medical receptionist at an urgent care. And I’ve been a medical receptionist for like, a few years now. So it was the job, I had pre stroke. And then that’s the job I returned to. And, you know, I felt like pretty competent at my job before this.
Suzzane Eykholt 46:45
And I had been doing it for a while I kind of knew what to expect. And then afterwards, it was just like, everything was hard, like typing was hard looking at screens was hard. I remember my coworkers were really, really understanding a lot of them knew what happened. And were really supportive and had luckily, like a lot of them had some knowledge about the effects of stroke.
Suzzane Eykholt 47:12
Because I worked in a medical setting. But I felt like when patients would come in, because I don’t look like I had a stroke. No one would know unless I told them patients would get really impatient with me, when I would ask them to repeat something. Or if I would make a mistake, it was really hard. I felt like people, my co workers were really patient and supportive. But I felt like any customer facing job. People are kind of ruthless, sometimes.
Bill Gasiamis 47:47
Customer service is so important. You have to be on your game all the time. Even though I know I’ve been in customer service roles before and I know what it’s about. And sometimes you’re not on your game. But we’ve created such a customer service focused world where it’s all about the customer experience. That the customer has really high expectations.
Suzzane Eykholt 48:14
Yeah. And also, to be fair, like, there’s been so many people that came in to where I work that were so nice. And so patient with me. And I had like a lovely time talking to, and it’s really far and few between that people would be really impatient and sometimes upset with me. But yeah it did stick out to me.
Bill Gasiamis 48:36
They’re probably having one of the worst days of their life as well. They’re probably sick, they’re coming to a medical facility. You know, they just need stuff done, and they need to be fixed and they need to feel better. And they probably got work to go back to who knows what’s going on. It’s legitimate, that they’re impatient. It’s not nice when you’re on the receiving end of it.
Suzzane Eykholt 48:58
Yeah, that’s the thing is like I understood, you know, I understand that it’s like people wanted you know, I think in some ways, I was ready to go back to work. But in other ways I definitely wasn’t at first now I feel like I’ve gotten a better handle on things. But at first I just I didn’t feel like competent at my job.
Knowing your limitsBill Gasiamis 49:21
Was even though you kind of overdid it by going back full time and it wasn’t necessarily in your control. Do you feel like pushing yourself a little further than where your comfort zone was helped you kind of get better than you were? You know that little push ourselves and can go beyond where we go beyond our limit. And then we can go ah, oh my gosh, I’m crashing but I know now where my limit is and I know how to approach it more gingerly. Did you experience that?
Suzzane Eykholt 50:00
Yeah, I noticed really big improvements with my typing, and my processing speed, like right away because I was just, it was this repetitive tasks that I was doing every day. And I feel like prior to going back to work, I would work on it with like my occupational therapists that I was with, and we would do it but like, you know, it wasn’t the whole day, it would be like an hour that we would work on something together.
Suzzane Eykholt 50:28
And then all of a sudden, when you’re kind of thrown in, it’s like, you really have to, you don’t really have another choice. So I felt like I do, you know, I felt like I saw a big improvement and in my recovery after going back to work, even if it was really exhausting.
Bill Gasiamis 50:48
So it sounds like a little bit of intense therapy at the same time.
Suzzane Eykholt 50:51
Yeah, it felt like a boot camp for like recovery.
Bill Gasiamis 50:55
Yeah. Okay. So not necessarily fully competent at work, but really doing a good job in recovering motor skills, and increasing your tolerance to fatigue and all that kind of stuff.
Suzzane Eykholt 51:08
And now I feel fully competent. And now I feel like I’ve gotten like a good handle on things. And I feel like I’m way more capable at doing my job the way I want to do it. But yeah, it was really hard to go back at first.
Bill Gasiamis 51:26
Yeah. You know, the days when you’re feeling a little bit down, low fatigue, etc. What, what’s kind of the, how does that come about? So for me, having a bad night’s sleep, even now, 11 years out, even now will mean that my morning is really a lot harder than than it needs to be.
Bill Gasiamis 51:50
But sometimes I didn’t cause the lack of sleep that particular night, something happened and I wake up, I couldn’t get back to sleep. So what do you feel like contributes to you having a bad day? Do you have any things that you know, definitely contribute to you having a bad day, the next day or the day after?
Suzzane Eykholt 52:11
Yeah, I felt like, when I would over exert myself, I would notice like the next day, it was just so much fatigue, I felt like I really wanted to push myself to kind of going back to like, my old life prior to this, and I would still want to hang out with my friends. And I would, I would want to go out and I would want to go do things.
Suzzane Eykholt 52:34
And I remember like the first time I tried to go to a concert, post stroke, and I was so tired. The next day, it took me like two days to just like lay in bed and recover because I was so exhausted. Or like I would want to go out with my friends and I just, I couldn’t keep up or I would just be so exhausted, I’d have to go home early or so I noticed that was a big trigger for like me feeling really low the next day.
Suzzane Eykholt 53:04
Even though I think like emotionally, it’s good to connect with other people. I had to adjust the settings I was able to do it in. And then if I have like a stretch of days at work where I’m working days in a row, I’ll notice that like I need a day off to recover. If I don’t sleep well, I noticed that too.
Bill Gasiamis 53:26
Yeah, the concert thing’s interesting because I had a couple of opportunities to attend some concerts. And I didn’t go on purpose. Because I felt like as much as I’d love to go to the concert, I’d be paying the price for a couple of days later.
Suzzane Eykholt 53:43
That’s exactly how I felt.
Dealing with sensory overload
Bill Gasiamis 53:45
But then I felt at some stage I got to the point well, I’m prepared to pay the price to go and see that particular artist for example, because I’m gonna have a great time there. Even though when I leave there, I’ll be tired and overwhelmed. Because there’ll be too much noise too much light, you know, and, and I’ll have sensory overload it’ll still worth the experience because I can at least say I saw my favorite artists live one time, you know.
Bill Gasiamis 54:15
So there was that and then that also meant that I was finding ways to get out of going to the football when people would invite me or to other sports and you’d be probably in this two hours of sitting and screaming at the umpire or the referee about a decision they made is going to be really difficult for me to come away from feeling okay about and you know, it’s never watching sport on TV, for example is you sit on your couch, you watch TV, and then you’re at home magically when the game’s over.
Suzzane Eykholt 54:50
Yeah, and you can kind of remove any like sensory information when you feel comfortable with it. I had so many issues with like sensory overload and overwhelm I still do.
Bill Gasiamis 55:01
You guys at your place share the space in with regards that the lighting, television and all that kind of thing because with my wife, we are now this we’re in two different worlds, I’ve got to have no lights overhead on pretty much all at night, I’ve got to just put on lamps.
Bill Gasiamis 55:21
And she likes to have a bright lit room. So she’s got to deal with my lack of lighting. And the volume is a weird thing, because she doesn’t mind having the volume a little bit loud. And I tried to have it a little bit lower because it overwhelms me. So do you guys navigate that sort of stuff in your place?
Suzzane Eykholt 55:42
Yeah, I mean, it was it was hard at first, I feel like early on, like I couldn’t tolerate bright lights at all. So I would always want to turn off all the lights in the house, where I’d want to have really dim lighting. And I would want to be really quiet. And I would want to, you know, close the blinds all the time. And I remember sometimes where it’d be like, I can’t see it so dark in here.
Suzzane Eykholt 56:05
Like, can we just turn on one light, and it’s but she was she was a really good sport. I feel like she definitely compromised on my behalf when it came to like the lighting and like the sound. But yeah, it was it was it was a big adjustment. I felt like I have my own space in the house that we live in, like I have my own room and I have privacy.
Suzzane Eykholt 56:30
So it was really important for me just to have like, a space where I could go, and there wouldn’t be anything overwhelming. And so that was my room, where it’s like I could go to my room, I wouldn’t have any noise in my room, I could turn off the lights, or I could make the lights really dim. And like if anything was really stressful in the outside world. Like I needed a place where I could go, where it wasn’t.
Bill Gasiamis 56:53
Where you can retreat.
Suzzane Eykholt 56:55
And recharge yeah.
Bill Gasiamis 56:58
That’s definitely me. At night, in the, in my bedroom, there’s the most dumbest of dim lights, where you can hardly see in there, but it’s enough to it’s enough, it’s enough to be lit. So that it’s not, I mean, they need sleep time, it’s that, that moment when you’re in your bedroom, getting ready for bed, but you don’t want it to be dark, you need a little bit of lighting around there.
Bill Gasiamis 57:30
Whatever you’re doing, you know, so there’s this the dimmest of dim lights. And it’s a really quiet room. I’ll just go down there and lay for about sometimes 30 minutes an hour before I actually switch the light off and roll over and doze off.
Bill Gasiamis 57:46
My wife usually that comes to bed a little later than me. Or maybe I go to bed a little earlier than I used to. And therefore I get to have that one half an hour to one hour time to kind of unwind before bed. Does that make sense?
Suzzane Eykholt 58:05
Yeah, yeah, I feel like that’s really important for me, too. It’s funny that we’re talking about lighting, because I have an overhead light in my room right now. And I like rarely turn it on. But I turned it on for this podcast, so you could see the screen. But I always have a lamp on instead.
Bill Gasiamis 58:23
Yeah, I appreciate that. And me too so in front of me, there’s a light right on top of my monitor. Two monitors is a light right in front of me. And as you can see, as I do that it’s shining right into my eyeballs there. And then there’s another one to my left. And you can see that when I do that, it’s which part of me it’s lighting.
Bill Gasiamis 58:46
But if you look on, if you look on YouTube, the best way to light, a recording studio, or a room when you’re doing a podcast, this is how they tell you to do it and if you don’t do like this, you’re not doing it properly. So it’s, I recorded another podcast episode just before this an hour before our recording I recorded another one.
Bill Gasiamis 59:08
So this is going to be our two in three hours that I’m recording two episodes, and it’s too much and I can feel that like I’m burning and etching something into my brain. I could totally feel it. And I can feel this one. And I don’t know if that’s weird. But I experience life differently. I experience it physically, I can actually feel the light. And that’s not a warm light. That’s like an LED the most pathetic little excuse for a light you’ve ever seen but I can actually feel its impact as if I was outside and the sun was shining on my body.
Suzzane Eykholt 59:52
I feel like I hit a wall sometimes like with the sensory input. Just where like if things are too loud or too bright? Or, like I just I feel like I shut down sometimes still.
The hardest thing about stroke – Suzzane EykholtBill Gasiamis 1:00:05
Yeah. As we come into the end of this episode, I want to ask you a couple of questions. Maybe you can answer maybe you can’t, but I just want to get your thoughts on it. What’s the hardest thing about the stroke?
Suzzane Eykholt 1:00:19
I think the hardest thing, which also, I think you can look at it two different ways, the hardest thing, I think I felt so alone and isolated. And I’ll circle back to the other part of what I was gonna say here, but I didn’t know anyone that was my age that had a stroke.
Suzzane Eykholt 1:00:42
I felt like all of the recovery information I heard about was typically at people in different stages of life than me and I didn’t know how to adapt it for my own life. And it was just, it was really scary. It felt really lonely and isolating.
Suzzane Eykholt 1:00:59
And, you know, I think, for me, that was the hardest part to grapple with, like immense sadness, that like I was just alone in this experience. But then on the flip side, I think because I’ve had a stroke, I’ve been able to find so many experiences, like talk to other people that have had experiences like mine.
Suzzane Eykholt 1:01:24
You know, I found your podcast through my endless Google searches about young stroke survivors, stroke survivors podcast, stroke survivor books, I try to find just any information I can about it, because I think I felt so alone and isolated, and I didn’t find any information at first.
Suzzane Eykholt 1:01:49
But the more I’ve kind of gone through this recovery process, the more I found connection through this experience, just like with what you were saying, how we get the chance to talk to each other.
Suzzane Eykholt 1:02:02
And I’ve been able to talk to other people that have had traumatic brain injuries that are around my age and share those experiences. And I think that’s also a gift. And then I hope that like me sharing my experience, someone will feel less alone.
Bill Gasiamis 1:02:19
Yeah, that’s great. Tell me about. So you might have kind of alluded to this in the last answer. But what has stroke taught you?
Suzzane Eykholt 1:02:32
Taught me, that I’m resilient.
Suzzane Eykholt 1:02:40
It’s taught me that a lot of the things I thought mattered, didn’t matter. And a lot of the things I wasn’t giving enough time and energy to, how important they are. I think I took a lot of people in my life for granted, and things in my life for granted, because I just thought that they were always going to be there.
Suzzane Eykholt 1:03:00
And I feel like a really big level of appreciation for my loved ones, and my life. And I feel like if I go on a walk, and it’s sunny outside, and just like being able to walk is fantastic, phenomenal. And I feel so lucky to be able to do that. You know that that feels like a gift now.
Bill Gasiamis 1:03:24
Yeah, I have a coaching client who just being able to go to his favorite beach location, even in his wheelchair, which he hasn’t been able to do for four months, because he had a really terrible experience with stroke. And then he’s in recovery, and they’ve just got home, but he felt isolated and stuck inside the house, right.
Bill Gasiamis 1:03:45
Just being able to work with him and his partner to just get them to work out how they could get to the beach, even if it was for just half an hour or whatever, was a big win. It made a big difference to how he felt emotionally, just being able to experience some simple joys, right?
Bill Gasiamis 1:04:08
That’s kind of what you’re saying. The final question is, what would you like to tell other people are listening that are going through what we’ve been through? Would you like to leave them with maybe a word of wisdom, thoughts of wisdom or just anything at all? What would you like to tell them?
Suzzane Eykholt 1:04:31
I think for people that have gone through something similar, just that it does get better. You know, recovery looks different for everyone.
Suzzane Eykholt 1:04:45
And I know that there are so many different forms of recovery that you can have post stroke, but if you keep giving it time, it felt really hopeless at first for me, but it gets better.
Suzzane Eykholt 1:05:01
I think that’s something I would want to tell people, that’s something I would want to hear myself. And then for people that maybe haven’t experienced the stroke, you never know what someone else is experiencing.
Suzzane Eykholt 1:05:17
And that goes way beyond just a traumatic brain injury or stroke. Like we don’t know other people’s lives. We don’t know what they’ve experienced, what they’ve been through. So I think just having patience with people and empathy.
Bill Gasiamis 1:05:31
Yeah, really lovely words, I think I agree with that. One of the things I’m really grateful for is the fact that now I know what other people are going through. And I’ve said it before, in a few episodes, that when I saw somebody in a wheelchair, I just assumed they were sitting down. And that didn’t mean much to me. But it’s just, I got to spend, say, three or four weeks in a wheelchair.
Bill Gasiamis 1:05:58
And I really learned deeply and very, very rapidly that I wasn’t just sitting down, that I was dealing with a whole bunch of shit that I had to come to terms with as well as the fact that I had to be in a wheelchair, that I couldn’t walk anymore, and somebody had to help me get around in the beginning.
Bill Gasiamis 1:06:19
And, yeah, that ability to empathize and see what’s going on for other people because of my experience, has been probably one of the more eye opening parts of this, and I’m so glad I’m not that ignorant anymore.
Bill Gasiamis 1:06:45
I’m not as ignorant as I was, and I’m okay with the fact that I was ignorant in that. You’ve never been through it. So how can you possibly know? But the fact that I’ve learned that, I can relate to what you’re saying. It’s really helpful.
Suzzane Eykholt 1:07:02
Yeah, that’s a gift I’ve taken from this experience as well.
Bill Gasiamis 1:07:10
Suzanne, thank you so much for reaching out. And being on the show. I really appreciated our chat and I think a lot of people will get a lot out of listening to your story.
Suzzane Eykholt 1:07:20
Thank you for having me.
Bill Gasiamis 1:07:22
Thanks for joining us on today’s episode. To learn more about Suzanne and to download a full transcript of the entire interview, please go to recoveryafterstroke.com/episodes. If you’d like to try the course five foods to avoid after stroke, go to recoveryafterstroke.com/courses to get on board now.
Bill Gasiamis 1:07:43
If you have been listening for a while and love this podcast, please help the podcast to reach more stroke survivors by leaving the show, a five star review and a few words about what the show means to you on iTunes and Spotify. If you’re watching on YouTube, comment below the video. Like this episode and to get notifications of future episodes, subscribe to the show on the platform of your choice.
Bill Gasiamis 1:08:07
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Bill Gasiamis 1:08:32
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Bill Gasiamis 1:08:47
And as soon as I receive your request I will respond with more details on how you can choose a time that works for you and me to meet over zoom. Thanks again for being here and listening. I truly appreciate you see you on the next episode.
Intro 1:09:03
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals opinions and treatment protocols discussed during any podcast are the individuals own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.
Intro 1:09:20
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Bill Gasiamis interviews Dr. Amir Hadanny, a renowned hyperbaric medicine specialist. Discover the incredible benefits of hyperbaric oxygen therapy for stroke recovery.
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01:04 Introduction
03:21 Dr. Amir’s background in hyperbaric oxygen therapy
10:50 Funding a study on hyperbaric medicine
12:11 What is hyperbaric oxygen therapy?
14:13 Risks of having too much oxygen
18:59 What is hyperbaric oxygen therapy for stroke survivors?
24:24 Not everyone can do hyperbaric oxygen therapy
30:47 The proper hyperbaric oxygen therapy procedure
43:32 The four components of the protocol
50:59 The discovery of new blood vessels in the brain
1:05:56 Other field of study of Dr. Amir Hadanny
Dr. Amir Hadanny 0:00
You know, so we knew that hyperbaric medicine or hyperbaric oxygen therapy induces new blood vessels in those diabetic wounds. I’m going to share a slide here, that’s kind of critical to understand.
Dr. Amir Hadanny 0:15
This is a nice slide from the Weitzman Institute in Israel that was recently published. And what it shows, on the left side is how a wound in our leg or in our hand is healing. And on the right side is a wound in our brain, which is a stroke. And, you know, when I grew up, when I got my medical education, people have told me you cannot repair the brain. Nothing can. But we know today that is not true, we can repair the brain.
Intro 0:51
This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.
Introduction – Dr. Amir Hadanny
Bill Gasiamis 1:04
Hello, and welcome to episode 250 of the recovery after stroke podcast. On this episode of the show, we are joined by Dr. Amir Hadanny, a Harvard research fellow in the brain modulation lab to discuss hyperbaric oxygen therapy as an intervention for stroke recovery.
Bill Gasiamis 1:21
Dr. Haddany has a background in neurosurgery and bio informatics, with a particular interest in using machine learning to improve neuromodulation therapies. He has been leading the analysis of factory network mapping project, and will share his insights on how hyperbaric oxygen therapy can benefit stroke patients. We’ll discuss the science behind hyperbaric oxygen therapy and its potential to improve brain function and promote recovery after stroke. Dr. Amir Hadanny, welcome to the podcast.
Dr. Amir Hadanny 2:00
Thanks for having me.
Bill Gasiamis 2:01
My pleasure. Thank you for being here. Now, you’re the work that you do interests me a lot, because I’m a stroke survivor. And the podcast is called Recovery After Stroke Podcast and lots of stroke survivors do listen. And they’re looking for ways to support their recovery and to heal their brain after a stroke.
Bill Gasiamis 2:27
And one of the things that does come up from time to time and it doesn’t seem to be a lot of information about it is the kind of work that you do, which is in the space of oxygen therapy in the hyperbaric setting. And we hear about hyperbaric therapy, and we hear about how a whole bunch of people can get a tank and put it in their house these days.
Bill Gasiamis 2:51
It’s really developed a little further. But there’s still not enough information out there to inform the general stroke survivor, the general public about how beneficial that is, if at all. Now, I know you’re doing some interesting work in that space. Before we talk about that work. Can you give me a bit of a background on you? How you came to be involved in oxygen therapy. Give us a little bit of insight.
Dr. Amir Hadanny’s background in hyperbaric oxygen therapy
Dr. Amir Hadanny 3:19
All right, perfect. So a little bit about myself. So I trained as a neurosurgeon, and continue to do functional neurosurgery. And I also trained as a hyperbaric physician. I have a PhD in bioinformatics and data science, which really makes me a big data nerd.
Dr. Amir Hadanny 3:45
So I’m really all about data. That’s how I practice I have to have data in order to get actual clinical decisions. And the story behind and I guess most of the listeners would ask what does a functional neurosurgeon doing with hyperbaric medicine?
Dr. Amir Hadanny 4:04
And it all came down back in 2008. One of my MD instructors, who started managing a hyperbaric chamber, and I was doing my residency in neurosurgery. And he was treating diabetic patients for non healing wounds. So wounds in the legs for diabetic patients, that’s a common indication for hyperbaric oxygen therapy.
Dr. Amir Hadanny 4:36
And some of them had previous strokes and all of a sudden they reported you know, my speech is getting better. My hand is getting better. My leg is getting better. So he called me up after three patients and I tell him, I don’t know. I’m the skeptical, probably the most skeptical guy on the talk here and probably in the world.
Dr. Amir Hadanny 4:58
I told him no way. I don’t know about this. So after he collected it, several more patients, we decided we need to do a study, we need to do a randomized control study to actually see if there’s anything in this. So we started then I was excited because I wasn’t in my residency, I had patients who suffered from stroke that we treated, we gave them TPA, or thrombectomy, which is the endovascular intervention to try and salvage as much brain tissue as we can.
Dr. Amir Hadanny 5:37
But eventually, as you and your listeners know, there is some disabilities that you remain regardless of the treatment you’re getting. So I was excited that we may offer something else for our survivors. So we got them did randomised control trials.
Dr. Amir Hadanny 5:57
And the results were astonishing. The first study we did was on motor function, neurological function, and quality of life. And what we have shown that all the patients that we selected for this study, and I’ll touch on patient selection a little bit later, got significant improvements in their neurological function, and in their quality of life.
Dr. Amir Hadanny 6:28
And we compare this to a control group that did not receive that. And after the study was done, we crossed them over, meaning that the control group now received the treatment and got our protocol. And they improved just as much as the treated group. So that kind of nailed it down.
Bill Gasiamis 6:50
That makes me smile, because very often you hear in studies, the control group doesn’t get the benefit of the other people in the study, and they usually miss out and it’s a bit of a shame, I love the fact that they got to experience the same protocol. So before we talk about the protocol, and the different things that you discovered, is there a difference between a functional neurosurgeon and a standard neurosurgeon?
Dr. Amir Hadanny 7:24
Yes, yeah. So just to touch back on the last previous point, yeah, I have to touch on that both me and the Professor are really finding it hard on the ethical part that leaving the control group or the placebo group, untreated, so we always try to stick it in, in our health in keys or IRB reviews that we want to treat the control group if it works. So that’s what we usually do.
Dr. Amir Hadanny 7:55
Now the difference between a neurosurgeon and a functional neurosurgeon, so standard neurosurgeon treats trauma, and stroke, and brain tumors. A functional neurosurgeon specializes after that, after he completes that he specializes in functional disorders, such as movement disorder in Parkinson’s, or central tremor, or epilepsy or pain in try to improve the quality of life with different procedures or implementations of devices.
Bill Gasiamis 8:31
Okay, now, at the beginning, you also mentioned your data. So that meant that when you had people going into the hyperbaric oxygen chamber for diabetes, and three of them reported back that the neurological symptoms improved for you. That’s just it’s not real evidence. It’s just anecdotal evidence.
Bill Gasiamis 8:52
But it’s the type of evidence that should make your ears prick up and go, well, this is interesting, at least. And why are these three people reporting that. Is that how that process begins to start to evolve into a proper study? Is it that they came to you? Why is it that you guys hear that information and notice it from a number of people and then say, can we create some kind of study around this? How does it get from anecdotal to actually becoming a proper research thing?
Dr. Amir Hadanny 9:27
Yeah, I think that’s the I think that’s the natural history of science everywhere, right? It starts with a couple of case reports or that people collect data from different areas and then think, Okay, this is worth studying or not, at all at times, it’s by chance.
Dr. Amir Hadanny 9:47
So in our case, we had those three cases. And we looked in the literature to see if anyone else had encountered this we found several more case reports. So we decided Yes, it’s worth to check in, you know, making study conducting a study is really hard. It’s a human study a lot of people are doing, you know, you read it in the paper, this guy is found the cure for cancer, these guys found the cure to Alzheimer’s.
Dr. Amir Hadanny 10:17
And then when you read in line, you see it actually rat studies or mice studies, or pigs or rabbits, or you name the model, doing an animal study is easy. Okay, for two reasons. One, it’s cheaper, it’s easy to get the animals, it’s easy to conduct it when you doing human studies. It’s so complicated, it costs a lot of money. And it’s a lot of effort to get the patient to treat them, follow up with them.
Funding a study on hyperbaric medicine
Dr. Amir Hadanny 10:50
So it’s a big, big thing to do a study and especially in hyperbaric medicine, I think hyperbaric medicine is one of the fields that you don’t have any pharmaceutical company behind it. So there’s no funding, there’s no patent involved in it. So nobody’s going to give you the money to do with no money donated. So it’s really hard to do a study of hyperbaric medicine. So you have to have good anecdotes to persuade you. Okay, this is worthwhile studying that there is maybe something in it.
Bill Gasiamis 11:30
And who funds a study like that? If it’s the pharmaceutical companies are not behind it, is it a private funding? How does it get up?
Dr. Amir Hadanny 11:40
So usually, we go to the funds from the government and different scientific groups or private donations or the hospital funds, usually it’s the hospital investigations funds that help us to do it.
Bill Gasiamis 12:00
Awesome. Let’s get stuck into it tell me a little bit about this first, journey into hyperbaric oxygen therapy for stroke survivors. Tell me a little bit about that.
What is hyperbaric oxygen therapy
Dr. Amir Hadanny 12:11
Okay, I think that maybe we can start at what is hyperbaric oxygen, I don’t know, if you’ve covered it in previous podcasts.
Bill Gasiamis 12:20
Probably not, that’s a good place to start.
Dr. Amir Hadanny 12:24
Okay, so let’s go back to the concept of what’s going on. So we’re talking about a metal cage or a box or a room that’s built from pure metal. And people go inside of it, closing the door, and then we’re compressing air in it. So because it’s built with metal, the pressure inside of it goes higher and higher and higher.
Dr. Amir Hadanny 12:52
And then when we reach a certain level of pressure, each patient is given a mask, and he or she breathes 100% Oxygen. And then what it does, it basically increases the level of oxygen to a very high level that you cannot get with just a regular mask.
Dr. Amir Hadanny 13:19
People may ask when I have oxygen in the hospital, or an oxygen tank when I’m diving, but when they do it under pressure, you’re able to dissolve much more oxygen molecules in the blood, and then in the tissues in eventually in your brain. And we’re talking about 20 to 30 times more than what we have currently.
Dr. Amir Hadanny 13:44
So that’s kind of how it starts what’s going on when you’re being exposed to it. But the more critical part of it is, what happens if you do it repeatedly. So if you’re doing it over and over and over again on a daily basis, that’s when the therapeutic processes actually occur. And we can drill down to that a bit later if you’d like.
Risks of having too much oxygenBill Gasiamis 14:13
Yeah. Now, is oxygen always good for you? I’ve heard that oxygen can be bad for the brain as well. Too much oxygen in certain scenarios can be bad for the brain. Is that right?
Dr. Amir Hadanny 14:27
So obviously, if you have an acute event, let’s say an acute stroke or an acute myocardial infarction, on the first day or the second day of the event, usually you don’t want too much oxygen because when the damage is happening right on the moment the damage is happening. If you have too much oxygen, you can create some oxidants right you know about antioxidants obviously.
Dr. Amir Hadanny 14:58
But too much oxygen can cause oxidants and increase the injury actually. So you don’t want to have high oxygen at the moment of the injury. But let’s say several days afterwards, no problem, there isn’t really an issue of too much oxygen.
Dr. Amir Hadanny 15:18
However, you need to know how to do it, definitely, there are certain protocols, that if you’re going to get out of them or breach them, they can be toxic. If you’re getting to a very high level of oxygen, let’s say five atmosphere for atmospheres of pressure. If you’re trying to give oxygen you can cause oxygen toxicity, so definitely, you need to do it by a professional protocol.
Dr. Amir Hadanny 15:50
And know what are the limits of safe oxygen. If you breach them, you can hurt your lungs and hurt your brain. Lungs can deteriorate in pulmonary functions. And brain can actually cause seizures. So definitely there is something that’s called too much oxygen. So one of them if you’re doing it right in the event itself, but two if you’re doing unsafe protocols, you have to know what protocols you’re doing.
Bill Gasiamis 16:22
Is that a risk of people having an oxygen chamber in their home?
Dr. Amir Hadanny 16:29
Yes, definitely. That’s a big no, no, on my behalf, I think doing oxygen therapy at home is unsafe. For several reasons, one, yes, you can actually cause oxygen toxicity. If the chamber can actually get to those levels. And obviously, if something goes wrong, and you’re alone, there’s nobody that’s gonna save you.
Dr. Amir Hadanny 16:59
And unfortunately, there have been accidents and those kinds of sacs are chambers. So you know, even a spark caught fire and then, we’re not just dealing with a stroke survivor. So that’s on one end. But the more problematic side of this is that efficacy.
Dr. Amir Hadanny 17:26
A lot of people go in to those chambers or sacs and doing okay, I’ll do something. But they’re not following any protocol that has been studied they’d just go “Oxygen is good for you, let’s go in.” That’s not how it’s done. You can consider oxygen therapy, just like any other drug, it’s not like you will go into CVS right now and say I’ll take this drug every now and then right, you need to be prescribed a certain protocol, and you need to do it at the right timing, at the right amount, right pressure.
Dr. Amir Hadanny 18:03
And if you’re not doing this, nobody knows if it’s effective or not. So it’s kind of taking medicine to your own hands, which I really don’t like, if you want to do it, if you want to do oxygen therapy, do it with a professional and do it in the right way. With the right protocols that were investigated, improved. In a randomized control trial. That’s what being a data nerd is all about. You have to do based on data and you have to do medicine based on data.
Bill Gasiamis 18:35
Yeah, fair enough. I completely agree. And there is a proliferation of those home tanks, and they cost a lot of money. AUD Australian dollars, they start probably at around $20,000 Australian and then they take up some space in your home, and then you’ve got to get in them and you’ve got to go through that process.
What is hyperbaric oxygen therapy for stroke survivors?Bill Gasiamis 18:59
I imagine that they become similar to treadmills, everyone buys a treadmill, they put it in their garage, and they start hanging the clothes on it so that the clothes can dry instead of run on it. I imagine it’s something like that, but I’m hoping that it’s starting to get looked at as a more serious medical intervention to help people that have a stroke. Is the field fairly new, or is it a field that has been around for a little while?
Dr. Amir Hadanny 19:36
So hyperbaric oxygen therapy, or hyperbaric medicine is already more than 70, 80 years old. And because it started from diving accidents. The whole field started by treating divers who breached protocols of diving and the only way to help them from their symptoms it’s called decompression sickness is going into a hyperbaric chamber.
Dr. Amir Hadanny 20:04
After that started, people realized we can heal those diabetic wounds or non healing wounds. So that’s been going on again for 50 or 60 years now. But the part for neurological patients neurological indications, including stroke, that’s pretty new.
Dr. Amir Hadanny 20:28
That is something that Professor Friday and myself are leading the investigations and the studies on it and the protocols to do it. Like I said, from 2008, before 2008. No data was there, other than anecdotes? So we took it to the next level of, okay. Let’s actually study this, let’s show what’s going on, do we get benefit from it? And what’s the mechanism behind it? So we talking about anywhere between 13 to 14 years old field, I would consider it rather new. And I think the potential is just getting started.
Bill Gasiamis 21:16
Yeah, 13 to 14 years ago. I mean, it’s very new. I mean, I had my first brain hemorrhage in 2012. And in 2012, podcasts really weren’t a thing yet. You know, the internet was just getting started, there was a lot of lack of information out there, and there was a lack of us, the stroke survivors being able to access that kind of information.
Bill Gasiamis 21:43
So it’s fairly new, I would imagine, but that’s good that, it’s been happening since 2008. I imagine you’ve got some good data by now. You’ve got some proven therapies by now. And you’ve helped a lot of people tell me a little bit about the actual work that you are doing and the things that you’ve discovered.
Dr. Amir Hadanny 22:04
So, like I said, the first study that we’ve done, we tested neurological function, motor function of patients with different neurological deficits. And we showed that we can actually improve motor function, as well as speech function, you know, people who have their areas of speech affected by bleeding or ischemia from the stroke, can lose their ability to talk.
Dr. Amir Hadanny 22:33
So we show that we can regain a lot of those capabilities back. The next study is focused on cognitive function. I don’t know if people know this, but apparently, up to 50% of stroke survivors suffer from cognitive deficits, whether its attention, or memory or processing speed, is slowed down significantly.
Dr. Amir Hadanny 23:04
Because you know, people think about stroke, okay, it’s just his hand or his just in his leg. But a lot of times, it’s all about cognition, that he’s not the same person anymore, he cannot go back to work because his brain doesn’t work the same to us so definitely, we focused on cognitive function.
Dr. Amir Hadanny 23:24
And we showed we are able to improve all the cognitive domains, like I said, memory, attention, executive function, processing, speed, coordination, we can regain a lot of the capabilities that were lost. Afterwards, we wanted to understand, does it matter what type of stroke you got?
Dr. Amir Hadanny 23:50
Obviously, there are different types. There’s ischemic ones when you have closure or clusion of an artery, and you have the hemorrhagic ones, like you mentioned, you had where the artery actually is ruptured. And also, you can have it in different areas of the brain. And you can have it in your dominant side or your non dominant side, we know that most people are their left hemisphere is dominant.
Not everyone can do hyperbaric oxygen therapyDr. Amir Hadanny 24:24
So if you have a right stroke, or left stroke, does it matter for our results? So we studied we spent a lot of times studying this and we found for most of it, it does not matter, it does not matter where you had stroke. And the reason for that is how we select patients.
Dr. Amir Hadanny 24:24
And I think that’s the critical part that I want to convey here. A lot of people, they’re doing hyperbaric oxygen therapy, whether they’re doing at home or clinics. The real thing is how you determine if a stroke survivor fits the treatment, if the treatment will actually benefit for it.
Dr. Amir Hadanny 25:11
So you have to do evaluations. So all of our patients go to specific evaluations that include cognitive assessments, physical assessments, and imaging. And in the imaging, we do two specific modalities, we do the MRI, that I’m sure a lot of people know about, which can tell us the anatomy of the brain, where the stroke was, what kind of damage happened there.
Dr. Amir Hadanny 25:46
But then on top of it, we’ll do another assessment called a SPECT scan, SPECT scan measures the function of the brain, or the metabolism of the brain. So we measure on each area of the brain, how much metabolism it works, and how much think about how much glucose it’s eating right now, to determine if this area is completely destroyed, or its normal functioning, or it has very low function that we can restore.
Dr. Amir Hadanny 26:23
So we want to work on areas that have low function, but not completely destroyed. Those are the areas that we can bring back to life or bring back to function. So during our evaluations, we look at the brain and we look, do we have those areas? We call those brain wounds or brain numbers, these areas? If we see them, then we know that, okay, we can improve those areas.
Dr. Amir Hadanny 26:55
But we need to know where are they located? And how do they correlate with the patient’s symptoms? If they’re in areas that if we will regain function, will it help the clinical symptoms. So that’s the evaluation that has to be done has to be done in order to determine if we’re going to help the patient, if that’s being done, appropriately. And if we select the patients, based on their on the imaging pay compared to the symptoms, then it doesn’t matter what type of stroke hemorrhagic is dynamic, and what’s the location of it and dominant and non dominant.
Dr. Amir Hadanny 27:45
All that matters is that you selected it correlated to the symptoms to those low metabolism areas. So again, take home message, patient selection, you have if you’re gonna do hyperbaric oxygen therapy, you have to do it in a place that’s doing evaluation and determines if it’s going to help you or not, not like oh, I’m a stroke survivor, let’s go in, not that.
Bill Gasiamis 28:12
I understand. Okay, so not everyone is going to be a candidate for hyperbaric oxygen therapy.
Dr. Amir Hadanny 28:22
I correct a lot will. Some of the patients are not some of the patients are at the point that it’s not going to work. And when you think about it, that’s how medicine always works. You have a treatment, it works for a significant portion of the patient.
Dr. Amir Hadanny 28:44
But on some it won’t, and you have to do this patient selection, because if you’re going to treat everyone, it’s never going to work. Think about acute stroke. When patients arrive to the hospital either getting a TPA or an endovascular intervention, we do patient selection, not everybody can have those procedures, depending on their time on the imaging on a lot of things, because we cannot do it for everyone. So patient selection for this medical intervention is critical.
Bill Gasiamis 29:17
Yeah, fair enough. Makes complete sense. And that’s kind of one of the issues with getting your own tank, putting it in the house and not having been evaluated by anybody for any reason. You might invest $20,000 in something that provides certain number of risks at home anyway, but then also maybe completely ineffective.
Dr. Amir Hadanny 29:41
Right, completely. It’s, a medical intervention, you have to do it with the professionals. I think people should really understand what they’re doing. It’s taking medicine into their own hands. They shouldn’t do it like like any other intervention, like they wouldn’t do an endovascular intervention on themselves, because they think they just now have a stroke is the same thing. It’s unsafe, and it may be uneffective. And it may be dangerous, so don’t do it.
Bill Gasiamis 30:15
Fair enough. All right. So the disclaimers are out of the way everyone has been forewarned. All right, so then, with the particular study, you guys selected your group, and then And then what happened? How did you go through the process? And, talk me through that.
Dr. Amir Hadanny 30:39
Okay, so are we talking about the study or a flow of a regular patient right now?
The proper hyperbaric oxygen therapy procedureBill Gasiamis 30:47
Yeah you take me through the process? I don’t really know. I want to learn you take me through the process. I’m very happy for you to guide the conversation. Yeah, for sure.
Dr. Amir Hadanny 30:56
Sure. So when we evaluate the patient, so patient comes in, and it can be two months after a stroke, or it can be 10 years after a stroke. I always tell patients, we need to do evaluations, I cannot determine if it’s going to help you or not, based on looking at you. Again, I need to do actual medical investigation.
Dr. Amir Hadanny 31:22
So the patient comes in, we see them, we evaluate them, we do a medical intake, we do physical examination, neurological examination. And then we start with a cognitive assessment. So they usually go and sit with a neuropsychologist, they sit in front of a computer and solve these, you know, games, you can call them, but they’re actual cognitive tests.
Dr. Amir Hadanny 31:48
Testing the memory, or their attention and all the cognitive domains. It’s all being done objectively on a computer. And then they meet up with a physical therapist, that again, tests everything, the range of motion and their the growth strength, and the reflexes, everything that we do, and their gait, everything that’s related to their injury, and overall neurological status.
Dr. Amir Hadanny 32:15
Then the patient also goes to the imaging facility where they go and have their MRI. So an MRI, very similar to a CT scan that a lot of the people here know about, lie down in the scanner, makes a lot of noise for 40 minutes or less, maybe 20 minutes, get their brain scan. And then they move to the SPECT scan, which is a very similar machine.
Dr. Amir Hadanny 32:45
Usually we inject some tracer into the veins, and then they’re being scanned about 40 minutes afterwards. Patient goes home, we process the data for about two, three days, we want to make sure we have everything, all evaluations, each professional writes up the report and their summary because we want it to be multidisciplinary. So we meet up the physician, the neuropsychologist, the physical therapist, the dietitian if we think there’s value for diet here.
Dr. Amir Hadanny 33:26
And we talk about what each of us saw and the impression, what was it, and then the physician looks at the imaging. And what we do in the imaging, we have specific algorithms that take the MRI, and put the SPECT on top of it. And then we calculate what we call the anatomical to functional matching. So we want to look at areas like I explained earlier, that are not completely dead, not necrotic. But have low metabolism. those are the areas that we want to take a look at. Can I share my screen? I’m not sure if it’s visual or not.
Bill Gasiamis 34:16
The penumbras right? You can show, so you’re talking about the penumbras. Now before you show anything, are we talking about even in patients that are 10 years post stroke? Could there be penumbras active or able to be rehabilitated?
Dr. Amir Hadanny 34:34
Yes, exactly. That’s the exact thing that we discovered. There’s something that’s called a chronic penumbra. A lot of people know about the acute penumbra that we look in the first couple of hours of the stroke, but we’ve realized that there is a chronic penumbra years after the stroke. And that’s exactly what we’re looking for in the SPECT.
Bill Gasiamis 35:00
Okay, please do feel free to show us some of your images.
Dr. Amir Hadanny 35:07
I’m gonna try and show a case.
Intro 35:10
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like, how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, and doctors will explain things that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 35:34
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you. It’s called seven questions to ask your doctor about your stroke.
Intro 35:54
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery, head to the website. Now, recovery after stroke.com and download the guide. It’s free.
Dr. Amir Hadanny 36:13
So this is a nice example of what we just talked about. So this is a 62 years old woman who suffered a stroke 14 months before coming to us. So a year and two months before that, she suffered a left side stroke an ischemic stroke, meaning her MCA artery was occluded.
Dr. Amir Hadanny 36:39
And because it’s on the left side, and she’s left side dominant, she suffered from right hemiparesis meaning right weakness in the right side, and aphasia, meaning she was unable to speak. So we did the MRI, and we did the SPECT scan. And what you see on the screen right now on the left side is the baseline SPECT.
Dr. Amir Hadanny 37:07
And, again, this is on top of the MRI scan, this is coregistered. And what we’re looking for here is the level of metabolism or level of function. So yellow is the average activity, red is high activity, green is low metabolism, low function. What we found, we found two specific areas that are low function here, what you see here, I don’t know if you can see my mouse, that’s the motor cortex, area of the motor cortex with low metabolism.
Dr. Amir Hadanny 37:44
And here, this is what we call it the Broca’s area, this is where we generate speech from. Both of these areas, are green meaning low metabolism. When we saw this, we said, okay, there is a logic to do the protocol. So we included her in the protocol that we’re going to discuss in a minute, what is the protocol, and after three months of the protocol, this is proposed scan.
Dr. Amir Hadanny 38:17
So we rescanned the same person afterwards with SPECT, and you see here, the green areas, most of it became yellow, most of the motor cortex, and both in the broca, you see some leftover green, but most of it is yellow, and this correlated with significant improvement in her right hand and her right leg movement, and she regained speech.
Dr. Amir Hadanny 38:46
Again, it was not as perfect as she was before the injury, but she was able to talk. And this is 14 months afterwards. I don’t know if everybody knows this. But basically, when we give the prognosis or we predict what’s going to happen for a stroke survivor, somewhere after the three to six months after the injury, their rehabilitation reaches a plateau. So whatever we regained in those three, six months stops. Here, we show that even 14 months afterwards. We still can regain rehabilitation.
Bill Gasiamis 39:37
That’s great news. I’ll tell you why. It’s great news. Firstly, because people get to the plateau. Doctors don’t do a good job of explaining what the plateau is and what it means. And then people leave hospital thinking that that’s it, no more recovery for them.
Bill Gasiamis 39:55
And that’s a big issue when doctors send people home and they feel like there’s no recovery, then lots of things can go get in the way to prove that there isn’t going to be any more recovery with the patient becomes potentially one of the people that proves the doctors, right. And, and that can be sad if that’s the case.
Bill Gasiamis 40:17
But what I love here is that you’ve actually got imaging for the first, one of the first times I imagine where you’re proving that beyond the plateau, there are numbers that can be rehabilitated in the brain, and therefore, restore function that is fantastic to hear. That is such an amazing thing.
Dr. Amir Hadanny 40:42
Exactly. And that’s the key thing. That’s the key. And that’s how you select patient, you literally understood what we’re talking about it, we want to see those chronic pain numbers, prove that they’re there. And if we find them, and we find them in most of our patients, we find them and they correlate with the symptoms, then we should do the hyperbaric oxygen therapy protocol. That’s exactly.
Bill Gasiamis 41:09
That is amazing. That’s so heartwarming. That’s so good to hear and see to actually visually see that. Now, when you first discover this, do you know what you’re discovered? Do people gather behind you and support you to take this to the next level? How does it get? How does it get up to that next level? Because I imagined in 2008, when all this started, do you guys would have been excited, but were you able to get the rest of the community excited.
Dr. Amir Hadanny 41:44
We’re trying I gotta tell you this is this is a working process. This is a process. And you know, I’m, I’m meeting with neurologists and neurosurgeons day in day out, I need I need to give the same talk and show them everything again, and again. Because even though we published, it’s not out there as much as it should. So it’s slowly getting them. We’re doing our best. But still, good one out there.
Bill Gasiamis 42:20
Good work. So just before we go into the actual protocol, I’m wondering about what you’re actually achieving here. So we hear about Neuroplasticity, and a lot of stroke survivors, it’s one of the first things they hear about when they go into a hospital after they’ve had a stroke. And when they go into rehab for the first time, you get the Neuroplasticity speech. And I think that’s an amazing speech.
Bill Gasiamis 42:45
Because, you know, Neuroplasticity can occur. Simply by imagining yourself walking, you can be creating new neural pathways to support the pathways that are no longer there, or pathways that have been lost so that you can when you go back to therapy, as you begin to walk, you’re enhancing the neural pathways that you’ve just imagined in the past.
Bill Gasiamis 43:10
And then you walk, even if you’re in the stirrups, even if you’re holding on to the bars, even if you’re in your cane or whatever you’re doing. And then what you’re doing is creating new neural pathways to to go around, I suppose for lack of a better medical word from me to go around the old ones, which are no longer working right.
The four components of the protocolBill Gasiamis 43:32
Now, in this case, are you re igniting old neurological pathways that were there? Are you bringing cells back to life? Are you like, what are you actually doing to the brain when those Penumbra has rehabilitated? How does it work?
Dr. Amir Hadanny 43:57
So there are four components that we have discovered that by doing our protocols that we’re actually doing. So the first one we’re providing energy to reignite I like that tendency use reignite those areas that were not that. So the necrotic areas, you know, after several months, the areas that suffered from damage beyond repair, they’re dead and there are no cell there.
Dr. Amir Hadanny 44:27
There are no cell there. It’s just water. So on those areas, on water, we cannot work. But those areas with the penumbra, those, those are cells that are alive, but are not friends meaning electricity. They have enough energy to survive, but they’re not doing action potentials that actually transmit data.
Dr. Amir Hadanny 44:52
Those are the areas that we reignite with the high level of oxygen. That’s number one. Number two What we found, we have a specific protocol. And again, we’re going to talk about exactly how we do it. But we’re doing something called oxygen fluctuations, meaning that each time the patient goes in the session, we’re doing several minutes with oxygen several minutes without, with oxygen.
Dr. Amir Hadanny 45:27
Without what it does. It’s something we call oxygen fluctuations. So high levels of oxygen normal level of oxygen, high level of oxygen, normal level of oxygen. What it does is it tricks the brain tricks each cell in our brain to think that it’s suffering from stroke, again, that it’s under stress that it has low level of oxygen.
Dr. Amir Hadanny 45:53
The reason we’re doing this is when the brain feels this, it triggers a specific molecule called one Alpha, our toxic induce factor one Alpha, that’s the trigger for brain repair. And that’s, and we have that in the first three months. That’s why we finish up with the plateau. Because the brain secretes that on its own in the first several months.
Dr. Amir Hadanny 46:21
But then it stops, we are able to force the brain to continue to secrete this molecule, this trigger of brain repair, by just by tweaking this high level normal level, retrieving it to continue repairing itself. That’s number two. And this is critical that we’re doing it on a safe level. Because the other way you could have had it if you I guess cause multiple strokes on yourself or choking, but that’s unsafe. By doing it high level to normal.
Dr. Amir Hadanny 46:58
We’re never in the unsafe areas. And we’re still triggering brain repair. That’s number two. Number three effects that we are able to do is we are we have shown we are recruiting stem cell neural stem cells, we’re actually bringing neural stem cells that can build new nerves in the brain areas that were injured, they’re not building it anywhere. They’re just building it, where the injury happened.
Bill Gasiamis 47:29
I like that I’m gonna interrupt there, you said something really important. You said they’re not building anywhere. So you hear a lot about stem cell therapy. And usually they’re infusions or injections, and they’re not targeted, they just go into any particular place. And it seems like they hope for the best.
Bill Gasiamis 47:47
And that was one of the things that I kind of struggled with when I heard about stem cell therapy. Is that how do you know where the stem cells are going to go? How do you get them to go where you want them to go?
Bill Gasiamis 47:57
So what you’re doing here is by by tricking the brain into thinking that it’s hypoxic, because it’s had that increased boost of oxygen, and then you’ve taken it down to normal levels. It’s going oh, my gosh, we got problems right here, we need to create neural stem cells right here right now in that spot.
Dr. Amir Hadanny 48:24
Exactly. Exactly the thing. You know, I couldn’t have upgraded better. I think a lot of people are injecting stem cells in the spine in their veins, I was even part of a study that, you know, we did it intracranial. So people injected stem cells in the brain itself. It doesn’t work.
Dr. Amir Hadanny 48:47
And you know, every decade, we see another study that people try to do it and it doesn’t work. And the reason it doesn’t work, because these are external stem cells that have no reason to, oh, I’m injected here, okay, I’m going to build something, they don’t have the trigger that I mentioned, and they don’t have the infrastructure to stay there and build it. So they’re just being injected, they’re floating around and die.
Dr. Amir Hadanny 49:15
That’s what happened to the stem cells that are being injected in so many clinics, so many areas. So it’s a shame. I mean, it has good logic, but then again, it doesn’t have good logic. And everyday can people think that they solved it? So far, all these external injections do not work.
Dr. Amir Hadanny 49:38
What we’re doing is we’re using our own energies, meaning our own bodies themselves, flowing to where they’re needed. And the fourth component is also the critical part that people are forgetting the infrastructure themselves will survive. If are being supplied with oxygen and blood, they need something to survive it. They’re not just it’s not like a Petri dish that you put them on.
Dr. Amir Hadanny 50:10
And they’re surviving, they they need something to hold on. So the fourth component of our protocol is inducing blood vessels. So we are building new blood vessels that are being formed in those areas. And again, in the areas that need it, it’s not, we don’t get new blood vessels in our hands.
Dr. Amir Hadanny 50:32
It’s just in those areas, we see that. So the stem cells can actually be supported to build new nerve cells. So in medically or scientifically, it’s called angiogenesis, the generation of new blood vessels and neurogenesis, the creation or generation of new nerve cells. Those are the four facts that we’re actually doing.
The discovery of new blood vessels in the brain
Bill Gasiamis 50:59
New blood vessels. Is that a fairly recent discovery? Is it something that’s been recently understood? Because I didn’t realize that we could increase the number of blood vessels in your brain.
Dr. Amir Hadanny 51:15
So we know about new blood vessels from the wounds, you know, so we knew that hyperbaric medicine or hyperbaric oxygen therapy induces new blood vessels in those diabetic wounds. And I think that the biggest concept and again, I guess I’m gonna share a very slide here, that’s kind of critical to understand.
Dr. Amir Hadanny 51:40
This is a nice slide from the Weitzman Institute in Israel that was recently published. And what it shows, on the left side is how a wound in our leg or in our hand is healing. And on the right side, is a wound in our brain, which is a stroke.
Dr. Amir Hadanny 52:02
And, you know, when I grew up, and when I got my medical education, people have told me, you cannot repair the brain, nothing can. But we know today in this decade, that is, it’s not true, we can repair the brain. And amazingly, it’s really similar. It’s exactly the same concept. So this comparison is beautiful.
Dr. Amir Hadanny 52:27
So the cells names are different. But it’s exactly the thing things happening here. We need vessels, we need the inflammatory cells, we need new nerve cells coming in, all these processes are occurring, exactly the same in the wound in our hand, and in the wound in our brain.
Dr. Amir Hadanny 52:51
And when we understand this, we can supply those four components that I’ve mentioned. So since we knew that in the wounded leg, we are actually getting new blood vessels. We just tested it out in our brains in our stroke. And we showed that we’re also doing the same thing. In our stroke area, we are creating new blood vessels.
Bill Gasiamis 53:18
I love it. Absolutely love it. So what we’re doing is the good thing about seeing this on a wound on the leg is that we get to see the wound heal, we physically get to see heal and close over, but we can see inside the brain under normal circumstances. So that would be invisible.
Bill Gasiamis 53:36
And I imagine when you guys first discovered this in 2008, you know, the people came to you, they said, Oh, we feel better in the head. Our cognition is different. Our stroke symptoms have eased or changed or become better. And that makes sense that you would go well, okay, that doesn’t mean anything to us.
Bill Gasiamis 53:57
Because we saw the wound heal on the leg or on the arm, but we didn’t visually see anything inside the head. So let’s go through the process of proving that by doing the study. I love the way the whole process has worked. And the way you guys think and the way that it’s got like that.
Bill Gasiamis 54:15
Now, what I also love about it is that visual that slide, it makes a real big difference to me. Because when I’m doing stroke recovery, and I get to see, and I get to go through the process of hearing that I’ve reached the plateau. And then by chance, I’ll learn about the penumbra.
Bill Gasiamis 54:37
And now by chance I’ve learned about the pin numbers that persist that are there beyond the plateau that can still be rehabilitated, and then I get to see the proof, the physical proof of a wound healing on somebody’s arm, which confirms that there are blood vessels occurring for regenerating in that particular wound.
Bill Gasiamis 55:03
And then I get to see the same thing in the brain, you’ve got me convinced I’ve understood the whole path, the whole process to get me to the point where I completely, totally understand how we can restore function in the brain in a spot that’s been previously damaged. That’s fabulous.
Dr. Amir Hadanny 55:22
Perfect, perfect. I, I love that. I reached to the crowd and I and people understand this concept, because it’s not it’s not easy to understand. And, you know, I have physicians and neurologists that it takes time for them to drop. But that’s, that’s what we’re trying. And that’s what we’re trying to convey here. And this is great news, like you said,
Bill Gasiamis 55:47
yeah, it is great news. I think neurologists have a different way of thinking about things, I think very simplistically, right? So I don’t need a lot to be convinced. And sometimes that’s the challenge is with stroke survivors, they don’t need a lot to be convinced.
Bill Gasiamis 56:00
They say, here’s something about hyperbaric oxygen therapy, they go by a tank, they put it in their in their house, because the guy who sold it to them, convinced them very easily or very well, that that’s what they needed. So they went and got it right.
Bill Gasiamis 56:14
Whereas I, I might be that way inclined. But this just makes me feel a lot better about the whole thing, and you’re not selling me anything. And that’s even better. So fun. So that’s awesome work. I just love the work that you guys are doing. So that’s the that’s is that the entire protocol. That’s part of the protocol. Right?
Dr. Amir Hadanny 56:37
So So I guess let’s, let’s go back to our journey. So we started with our assessments, right? We did the cognitive we did the physical, we did the imaging, we correlated symptoms with the imaging, we determine that the patient is eligible and will benefit from this.
Dr. Amir Hadanny 56:56
And then he goes through the program, whether the program includes for the program is three months, 60 sessions, five days a week, two hours a day, inside the chamber. And inside the chamber each time, they need to do our protocol, this same protocol that we use in the randomized control trial, I don’t know about different protocols, I know about this one, this one was able to induce those four components.
Dr. Amir Hadanny 57:25
So we do this 60 times, five days a week, two hours a day, we month. And then in usually, on top of that really determine case by case, if we’re going to add cognitive training or physical training on top of the chamber, maximize the efficacy in the trials, we did not use them. We did not use any physical therapy, any cognitive training, because we just wanted to show the hyperbaric oxygen therapy effect.
Dr. Amir Hadanny 58:02
But obviously, when a patient comes in, outside of a clinical study, I want to give him the maximize the maximum effect. So again, the Chamber then I considered do I want to combine it with physical therapy and cognitive training, and maybe a specific diet if I think it’s going to be beneficial.
Dr. Amir Hadanny 58:22
Do this three months. And at the end of the three months, we’ll repeat everything. So we repeat come to function, we repeat physical function assessment, and we repeat the SPECT scan, there’s no need to repeat the MRI scans because we know about anatomy, we want to see about metabolism.
Dr. Amir Hadanny 58:41
So we repeat the specs and like we saw about the lady we saw earlier, repeated and we want to see if we were able to heal those brains, those areas of chronic pain numbers, exactly that.
Bill Gasiamis 58:59
So a 62 year old person is not restricted by age with regards to being able to generate their own stem cells.
Dr. Amir Hadanny 59:07
Nope. We have actually done an aging study. We’ve got an aging study on people over 6070 and 80 years old. And we have shown that we recruiting the number of stem cells just as much as we do on younger people.
Bill Gasiamis 59:26
Wow, that’s good news, too. Yeah. Because it’s because yeah, because it’s often often suggested that people who are older, probably candidates for stem cell injection therapy or something along those lines because of the fact that they are older and because of the fact that they’re less likely to be able to generate growth hormone and other other factors.
Dr. Amir Hadanny 59:59
There on AIM Well, too, in their normal physiology, as we get older, we don’t have the trigger for repair. But if you’re doing the protocol, you’re forcing their body and their brain to induce those triggers, just like in earlier. So it’s true that normal physiology makes an ageing brain to do less repair, but if forcing it to induce the trigger, it will repair itself. Okay.
Bill Gasiamis 1:00:31
So your, your patient has to commit to a fair routine a fair regimen of treatment, five days a week, two hours a day? Are those two hours in the chamber at the same time? Or are they different times? Or
Dr. Amir Hadanny 1:00:53
usually a think we can accommodate it, we’ve, the patient needs to move it here and there, but usually it’s saying they every day, five days a week, two hours
Bill Gasiamis 1:01:04
solid in the chamber? Alright, okay, where does? Where does your work take place, which part of the world.
Dr. Amir Hadanny 1:01:13
So we started in Israel, that’s where we did all the research. And then we started deploying clinics. So we have a clinic in Dubai, in Asia, then a clinic in the United States in Central Florida. Those are the first two clinics and we’re expanding. Next year for more clinics, we’ll have one in New York City, and more to come in.
Dr. Amir Hadanny 1:01:38
Because the goal is to touch the lives of everyone we can in. We haven’t discussed this, but as you know, stroke is the real pandemic. You know, people learn the word pandemic, past three years, but stroke is the real one. You know, it happens every minute, anywhere in the world.
Dr. Amir Hadanny 1:02:03
And there are so many stroke survivors that people don’t even understand how many. So we want to reach out as much as possible, anywhere we can. And to provide them with the high quality protocol that we know that can help them.
Bill Gasiamis 1:02:23
One in four people, I think the World Health Organization’s says that will experience a stroke in their lifetime, it’s dramatic, and a lot of those people, majority of those people end up with some kind of a disability. And it’s a big challenge. Is that particular protocol that you’re able to facilitate people for Is it expensive? How do people pay for that? Is it reliant on their insurance? How do you go about bringing people on board?
Dr. Amir Hadanny 1:02:56
I think that’s the most painful part, at least for me. Right now, it’s not covered by an insurance. So it’s all out of pocket for the patient. It remains a bit expensive, I would say, for a lot of patients we are I think that’s well, I don’t think I know, this is my My life goal to make it true.
Dr. Amir Hadanny 1:03:22
And that’s why I do my studies. We are planning to do more and more research in order to get it approved, you know, medical in order to get a medication or any procedure approved by insurance. He takes a lot of time and a lot of years to get approved.
Dr. Amir Hadanny 1:03:42
We are doing this we are in the process, but it will take many more years until we get we get that approval and signature here the insurance is going to cover it. But that’s what are we doing? That’s what I’m doing. But we’re not voting for the time being. It’s not covered and it’s out of pocket for the patients.
Bill Gasiamis 1:04:03
Yeah. The people who are deploying the clinics in other countries, and then deploying them on the on your behalf. Are they other colleagues that are involved in the research? How does another clinic get set up? Of course, we don’t need another whole process, but like how does somebody get
Bill Gasiamis 1:04:21
a new location gets selected, and then a new clinic established?
Dr. Amir Hadanny 1:04:25
So I’m part of the team of the company that doing those clinics. I’m the chief researcher, and the head of the medical operations. So when we set up a new clinic, it’s being built from ground and we select our physician, I trained them.
Dr. Amir Hadanny 1:04:48
I trained him personally on the protocols and how it’s done and I usually spend time with the physicians in the clinic for several months in order to make Make sure we get high quality protocols and we select the right patients, we do the right treatments, because you know, I am as strict as possible and the quality that we want to deliver. So I personally oversee everything.
Bill Gasiamis 1:05:18
Now, I know I’m a stroke survivor. So it’s my favorite topic to discuss helping stroke survivors. So I love that workbook when I’m on the website at aviv-clinics.com. And I’ll have the links for the website in the show notes.
Bill Gasiamis 1:05:34
I’m noticing there’s a whole bunch of other things that oxygen therapy has helped people with, including PTSD, including people that are 82 years old, helping them to run marathons, including a whole bunch of other things. But the PTSD one really struck me.
Other field of study of Dr. Amir HadannyBill Gasiamis 1:05:56
So again, is that something that was discovered by accident through these types of protocols, and that has expanded into other areas of research? How did these things come about?
Dr. Amir Hadanny 1:06:10
Awesome question. So my other passion as a neurosurgeon, except stroke is traumatic brain injury, which is a very, you know, very, I guess, political or discussed matter. You can get traumatic brain injury from sports, NFL, rugby, or you can get it in the military, from different accidents, different explosion, different events, or even a regular motor vehicle accident. So I treated a lot of traumatic brain injury patients.
Dr. Amir Hadanny 1:06:47
So we saw a lot of them are suffering from different disabilities after the treatment, whether it’s a mild concussion or whether it’s a severe injury. And again, during my residency, after the stroke study was completed, when we understood about chronic penumbra, as we said, we need to understand what’s going on with traumatic brain injury.
Dr. Amir Hadanny 1:07:11
And we basically found the same thing. If you had a traumatic brain injury several years back, we want to see if we find penumbras, we want to see if we find penumbra in your brain, and if so, do they correlate with those symptoms? And if so we can treat them. So we’ve done this, again, several randomized clinical trials, both in adults and in pediatrics.
Dr. Amir Hadanny 1:07:40
And out of that, just to go back to your question. Some of TBI patients suffer from PTSD. And then we got the reports from several of our patients that their PTSD is changing. And I gotta tell you in the first couple of session, it can actually deteriorate, we found out that in first two or three weeks, people are re experiencing things.
Dr. Amir Hadanny 1:08:11
And we had to help them go through those several weeks. And afterwards, they go back into sessions, and they come out differently. And when we realize we can actually affect PTSD, we started a randomized control trials for PTSD. One of them is still running right now in Israel.
Dr. Amir Hadanny 1:08:35
And we’re seeing some nice results, we’re going to publish them, we did the first study on it. Now, we’re reconfirming the evidence we’ve got. So very exciting. And it all comes down to understanding what’s going on in the brain. Doing patient selection based on what we see on brain imaging and the correlation to symptoms.
Dr. Amir Hadanny 1:09:02
If you don’t have it, not going to do anything, you have to actually see the brain and select your patient based on that, regardless of the pathology.
Bill Gasiamis 1:09:14
Dr. Haddany this is a really amazing interview. Thank you so much. I really appreciate it. The information that you shared, I think offers hope, more than anything to the people who are listening and watching. If you’re listening, you definitely need to go to the shownotes. So you can see the slides that we were speaking about.
Bill Gasiamis 1:09:33
And if you’re on YouTube, hopefully you’ve actually seen the slides that we’re talking about because I think they really are picture paints 1000 words, as far as I’m concerned. So they’re really important. I’ll plaster them everywhere and make sure that you guys get to see them.
Bill Gasiamis 1:09:51
I just wish you guys every success in the work that you’re doing. I think it is going to be unbelievably successful. I hope that you guys have clinics all over the world. And I’m looking forward to the first clinic opening in Australia, I might go and visit it myself.
Dr. Amir Hadanny 1:10:11
Thank you so much. Thank you. I’m really hoping to get as much as possible done, and get it all approved and help as many stroke survivors because really, this is a life goal of mine. And we hope to succeed and actually affect people’s life. Do good is our motto.
Bill Gasiamis 1:10:33
Dr. Haddany, thank you for being on the podcast.
Dr. Amir Hadanny 1:10:36
Thank you so much.
Bill Gasiamis 1:10:38
Thank you for joining us on today’s episode, I hope you got a lot out of this particular interview, I certainly did the hope that the work that Dr. Madani is doing and that offers stroke survivors is really truly amazing and groundbreaking.
Bill Gasiamis 1:10:56
They’re talking about things that I’ve never heard before, that is very seldom spoken about these long term spots in the brain that are still kind of low in energy and need some assistance to get back to working in some way shape or form.
Bill Gasiamis 1:11:14
And then hopefully restoring some potentially lost function to stroke survivors, even after many, many years beyond stroke. So the fact that the imaging has gotten to the point where it is enabling people to find these new places these new power numbers that can be rehabilitated is truly amazing, I was really excited to hear the information that Dr. Haddany shared.
Bill Gasiamis 1:11:48
Now if you’d like to learn more about my guests, including links to their social media and other pages, to download a full transcript of the entire interview, please go to recoveryafterstroke.com/episodes. If you would like to try the course five foods to avoid after stroke, go to recoveryafterstroke.com/courses. If you would like to support this podcast, the best way to do it is to leave a five star review.
Bill Gasiamis 1:12:17
This is a really important thing that I would ask anyone listening who has a moment and can can do please do leave the show review because it’s going to make it easier for other stroke survivors like you who needed this type of information, find it easier, and that’s going to make it better on the path to recovery for them. For those who have already left the review. Thank you so much. I really appreciate it.
Bill Gasiamis 1:12:42
It does make a huge difference to how we go through this recovery process. If you leave a few words on iTunes, and Spotify, they’re the best places. Also on YouTube, you can leave a comment below, ask me a question. I’ll respond. I’ll answer your questions. Give the show a thumbs up subscribe.
Bill Gasiamis 1:13:03
Any interaction with any of these podcast episodes just makes a massive difference to the way the search engines make it so that other people can find the show. Now, if you’re a stroke survivor with a story to share, come and join me on the show. The interviews are not scripted, you do not have to plan for them.
Bill Gasiamis 1:13:24
All you need to do is be a stroke survivor. Here’s somebody who is a stroke who is a stroke survivor, and be one of the amazing people like Dr. Haddany who do work that improves the lives of stroke survivors. It doesn’t matter whether you’re a doctor or an allied health professional.
Bill Gasiamis 1:13:45
Anyone at all, who’s in that space is welcome to join us on the show. Go to recoveryafterstroke.com/contact fill out the contact form. As soon as I receive it. I will respond with more details on how you can choose a time that works for us both to meet over zoom. Thank you for being here and listening. I really appreciate you see you on the next episode.
Intro 1:14:10
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The post Hyperbaric Oxygen Therapy – Dr. Amir Hadanny appeared first on Recovery After Stroke.
After experiencing a bleed on the brain at just 33 years old, Blair Ames reached out to Bill multiple times to be on the podcast but was never quite ready until now.
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Highlights:
01:00 Introduction
04:43 Stroke at the age of 33
08:54 The stroke symptoms
14:38 When the gravity of the situation hits you
18:45 The Emotional Rollercoaster of Stroke Recovery
24:43 Dealing with new emotional states
27:42 Setting a stroke recovery deadline
31:59 The importance of sleep in stroke recovery
44:06 Managing time for stroke recovery
49:35 Avoiding alcohol after a stroke
1:02:14 The current status of the AVM
1:09:02 The possibility of another AVM bleed
1:17:49 Blair’s advice to stroke survivors
Transcript:
Blair Ames 0:00
I mean, for me, the emotional aspect of recovery has certainly been the biggest challenge. The physical aspects for me, I felt like it kind of came naturally. I’ve always enjoyed physical activity, working out. So I was never worried about being able to kind of rebuild myself. But for me, stroke recovery has kind of been everything I never would have expected it to be, in terms of the emotional and psychological aspect of it. That it’s been a significant challenge for sure.
Intro 0:47
This is the recovery after stroke podcast. With Bill Gasiamis, helping you navigate recovery after stroke.
Introduction
Bill Gasiamis 1:00
Hello, and welcome to episode 249 of the recovery after stroke podcast. My guest today is Blair Ames, a guest who was really grateful to be able to join me on the podcast, because Blair experienced a bleed on the brain at age 33, due to an arteriovenous malformation.
Bill Gasiamis 1:21
And he discovered the podcast early on. And he reached out a number of times to speak with me to be on the show. But we were never able to make it happen, because he was never able to fill up to the conversation and to be on a zoom call.
Bill Gasiamis 1:40
But now he is. And that is an amazing thing. I am so grateful that somebody who has been on this journey for a couple of years is now good enough, well enough, comfortable enough to finally get back in touch and say, Hey, are we going to do this?
Bill Gasiamis 1:57
Let’s do this podcast interview. So I’m grateful. And this is what stroke recovery is it is tough, and it’s difficult. But with time things do improve, and things get better. So that’s enough from me, and I hope you enjoy this interview. Blair Ames, welcome to the podcast.
Blair Ames 2:23
Thanks for having me.
Bill Gasiamis 2:24
It took a while. But we got here. We were trying to get this organized for quite some time. Stroke recovery goes like that it takes a while to get over the line sometimes.
Blair Ames 2:38
Yeah, Bill, your podcast when I first returned home from the hospital and rehab center, your podcast was one of the first resources I found to really learn more about stroke recovery. And I remember reaching out to you multiple times just exchanging emails, exchanging notes. And it’s kind of surreal to be talking to you now. But it’s a pleasure. I’m looking forward to it.
Bill Gasiamis 3:01
It’s a pleasure here mate. I’m glad when I come across a stroke survivor who’s got a struggle and not realizing at the beginning that you’re in the beginning of this whole saga. And what that needs to do is probably get you over the line with you know, rest recuperation, working out this new version of yourself, you know, there’s so many things to consider.
Bill Gasiamis 3:27
And reaching out is a quick thing. Like it’s clearly okay, you know what, this guy knows what’s happening, let me reach out to him and then I’ll get some solutions to some problems, who knows what, but then sometimes that’s not the first thing you need to be doing.
Bill Gasiamis 3:42
The first thing you need to be doing is taking care of yourself and finding a way to deal with everything and get better and be healthier. And it happens a lot. A lot of stroke survivors will reach out to me and then I’ll hear from them a year later. And they’ll be telling me how far along they are compared to when they first reached out.
Bill Gasiamis 4:02
And that’s the real exciting part. It’s that I get to see people actually get to overcome a lot of the challenges. And even in the state that they arrived at 12 months later, they’re still talking to me about how much better it is and how much more energetic they are and how now they’re able to actually be available to be on the podcast and they’re gonna make it through a whole episode rather than fall asleep or something. And that’s so heartwarming and that’s just brilliant. So I’m just as excited that you’re here as you are. So tell me a little bit about what happened to you.
Stroke at the age of 33
Blair Ames 4:43
Of course. So I am now as of today just past the 23 month mark. I at age 33 I was in the middle of the gym, working out. started to feel a little funky, I ended up going outside thinking I just needed a breath of fresh air to relax. And over the course of, you know, 10 to 20 minutes after I left the gym, I was standing by my car and I collapsed.
Blair Ames 5:16
Thankfully, there was a number of people nearby who were able to come over, help get me comfortable, call 911. And I was rushed to a hospital. And that’s where I learned what a stroke was, what an AVM was, where my AVM was all those details. So I was certainly one of those people before stroke. I had no idea what a stroke was. I had no idea what an AVM was.
Bill Gasiamis 5:48
So I looked at your scan, because you’ve got it on your blog website, what is it strokerecoveryrehab.com. That’s it. Yep. And that image looks very similar to my image. So I had an AVM that bled, it was near the cerebellum, nice and deep they called it.
Bill Gasiamis 6:14
And you wouldn’t believe it. So a friend of mine who helped me get through that time in 2012, was a radiographer who put me in touch with some awesome neurosurgeons and all those things, used to give me some feedback on the scans, and all that kind of stuff a little bit more detailed feedback than what you would get from your doctor, you know, because he was the one actually doing the scans.
Bill Gasiamis 6:41
His daughter, who’s 17, literally a month ago, had an AVM that bled. And it looks almost identical to the image that you’ve got there, and my image, this is becoming a little bit annoyingly common. And it’s supposed to be rare. Right? So before you went to the gym, did you notice anything in the weeks months leading up to it that perhaps something was about to? Well, in hindsight that something was brewing?
Blair Ames 7:23
No, absolutely nothing at all. It was, a very normal Saturday morning for me. When I started feeling funky in the gym. Like many other people, I just chalked it or like many other people would I just chalked it up to you know, we had a late night the night before, maybe had a few too many, was very hot out. I had no idea that there was anything bubbling under the surface.
Bill Gasiamis 7:51
It sounds like you read straight out of the rulebook, how to reflect back on why you’re having a stroke it’s like, I had too much to drink or I was at the football and I was screaming too much or so many excuses that are not relevant. But we chalk it up to anything that our mind tells us might be appropriate, just so that we can somehow get through.
Bill Gasiamis 8:21
I must add as we continue that my friend’s daughter went from ICU to back on her feet within a month. So it’s extremely a good outcome. So for anyone who was going to be concerned about that, thank you for your concern. And I just wanted to get that out of the way now.
Blair Ames 8:40
That’s great to hear.
Bill Gasiamis 8:41
Yeah, it’s really good. So you’re in the gym. And now what happens? How do you get help? How do you move through that phase?
The stroke symptomsBlair Ames 8:54
Yeah, of course, I was about halfway through a workout. And one of the first things I started to notice was my vision was a little blurry. So I thought perhaps I had put my contacts in the wrong eyes. That’s what I use. You were just saying, you know, we kind of chalk it up to two other events.
Blair Ames 9:14
But then as I went to pick up a dumbbell, my left hand, my fingers wouldn’t grasp the dumbbell. I couldn’t, you know, I couldn’t grip the dumbbell. So at that point, I was like, you know, I need to go outside, take a break. And I kind of stumbled on my way out, I kind of tripped over my my gym bag.
Blair Ames 9:39
But I did did make it outside to my car. And while I was in my car, I was texting my girlfriend at the time who’s now my fiancee. I was texting her and just letting her know that I was feeling a little off and I was like, Hey, you might need to come get me I might need some water.
Blair Ames 10:03
And over the course of maybe just five or 10 minutes sitting in the driver’s seat, I really started to feel just very discombobulated, I struggled, even just leaning the seat back to lay down and relax. And so I texted her and I was like, my mood shifted from, you might need to come get me to, I would like you to come here now please, like pretty soon because I feel pretty funky.
Blair Ames 10:31
And then as I mentioned, once I had got out of the driver’s seat to just lay down in the backseat. And as I opened up that rear door, that’s when I just collapsed to the ground. And that’s when there were some nearby people who were able to rush over and, you know, thankfully keep me comfortable and call an ambulance.
Bill Gasiamis 10:54
So left side deficits, you collapsed, because you couldn’t feel one side of the body or were you dizzy? What happened that made you collapse?
Blair Ames 11:05
To be honest, I don’t it just, it all happened so fast. You know, I opened up the rear door, I just wanted to lay down in the back seat thinking I could just you know, relax all these weird feelings away. And I assume my left side kind of, I guess just gave out at that point, maybe
Bill Gasiamis 11:25
Relax all those weird feelings away?
Blair Ames 11:29
I was going to try.
Bill Gasiamis 11:30
I love it. I was in my car the third time it bled. And I thought I’d walk around the outside of the car. And that will make my symptoms go away. But alas, it did not work. It worked for a moment. And then when I got back into the car, I realized this is pretty bad. So she was with you by now. And then how did you guys respond to your collapsing? What happened then?
Blair Ames 11:57
Oh, yeah, it was actually great timing on her part. She got there as the ambulance got there. And you know, I was very lucky to have her by my side this whole time. She was she was there as because we had we had originally gone to a local regional hospital.
Blair Ames 12:16
And I needed to be airlifted to Johns Hopkins in Baltimore, which is about three hours away from where we are on the eastern shore. And no, she was she was great. She was there with me the entire time. And I think for her and my family as they traveled down from Philadelphia to be at the hospital in Baltimore. You know, I think it was honestly probably a little bit harder on them than it was for me because I was so naive to what was going on.
Blair Ames 12:54
I was in the ambulance. I was just worried that, you know, this is gonna be really expensive. And this is really annoying. Am I going to have to come back to the gym tomorrow to finish this workout? Or am I going to do a different workout? So for me, I was very just kind of annoyed by what was happening to me. I was never really worried about what was happening to me. And I guess I think it’s just because I was so naive to the seriousness of it.
Bill Gasiamis 13:29
Yeah. So your parents coming down? How far are they traveling?
Blair Ames 13:34
Philadelphia to Baltimore about two and a half, three hours depending on traffic.
Bill Gasiamis 13:38
Yeah. Okay. So it’s a reasonably quick trip. But nonetheless, it’s a hike. They’ve got to get there. They just know there’s something wrong. They don’t know what’s wrong. They’re probably at their wit’s end. It’d be a hard drive. For sure. Your girlfriend at the time is how is she coping with all of this? She’s being the middle person between you and your parents? How’s she doing?
Blair Ames 14:03
You know, she was great for me just to have her there with me the entire time. So I’m not alone in those hospital rooms as I’m waiting for the helicopter crew to get there. But I know it was it was certainly hard on her. She had an interesting story that she told me after the fact but there was one point where I had been wheeled back for my initial CT scan.
When the gravity of the situation hits youBlair Ames 14:38
And the nurse was coming by and she had asked the nurse, you know, is the is he going to be okay? And she told me that the nurse didn’t give her an answer. The nurse just handed her a box of tissues. And that was it. So when I heard that story, after probably many months later, that really kind of just triggered how serious you know, this situation was. And like I said at the time, I was completely oblivious.
Bill Gasiamis 15:13
Yeah. You know, that seriousness when it finally hits home. How does it impact your emotions and your mental health? Because I’ve had a lot of people that I’ve spoken to clients, and also, podcast guests who have told me that there was a realization that there was kind of like a line in the sand moment when they realized that they could have not been around.
Bill Gasiamis 15:43
And sometimes you hear about people who almost had a car crash and make it sound like they had a car crash. And it’s like, they go nuts, and they lose it at the other driver. And my whole theory on that is, when that happens to me in the car, the whole theory is, well, we didn’t collide, right? So everything that you are talking about didn’t happen.
Bill Gasiamis 16:08
So we had the best outcome, and nothing went wrong, because we didn’t collide. But then the other person is treating it as if they collided, right? So stroke survivors have this thing where some people imagine themselves having died, and that they’re not around anymore. And the gravity of that is really a lot to bear.
Bill Gasiamis 16:35
What kind of guy are you? Are you the guy that goes up? I got away with it. Like I say, like, I tend to sort of say, well dodged the bullet. And then other people go, Oh, my gosh, I don’t know what that means that I’m I’m here, but I should not be or may not be, may not have been or may not be in the future. It’s the first time they really get a sense of mortality. What happened? How did you cope with that?
Blair Ames 17:04
Yeah, you know, I would say, certainly, I’m not the kind of person I’m not the kind of individual who had a stroke. And it’s like, you know that old version of me died that day. That’s a little too dark for me to say something like that. I think it’s maybe more important to think about how you’re just evolving, you’re not so much, you know, lamenting how that old version of you is gone, you’re just evolving into a different person. But overall.
Intro 17:42
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like, how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse.
Intro 17:59
Doctors will explain things that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you.
Intro 18:22
It’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery, head to the website now, recoveryafterstroke.com and download the guide. It’s free.
The Emotional Rollercoaster of Stroke Recovery
Blair Ames 18:42
I mean, for me, the emotional aspect of recovery has certainly been the biggest challenge. The physical aspects for me, I felt like it kind of came naturally. I’ve always enjoyed physical activity working out. So I was never worried about being able to to kind of rebuild myself. But for me, Stroke recovery has kind of been everything I never would have expected it to be in terms of the emotional and psychological aspect of it. It’s been a significant challenge for sure.
Bill Gasiamis 19:29
Okay. I find this as well. So people come along and they say, you know, I need some help with my recovery. I want to get beyond my stroke deficits and all that type of thing. And they see the obvious physical deficits as the thing that steps in the way of their recovery.
Bill Gasiamis 19:50
And then it’s a real difficult conversation to have with somebody to sort of suggest that the deficit that you’re dealing with, I’ve got nothing to do with your stroke recovery, they’ve just got to do with one aspect of your physical of the way you physically move around the world.
Bill Gasiamis 20:10
How you respond to that emotionally, and how you respond to that mentally, is what exactly what you said is where the challenge is. And if you’re somebody whose life before stroke, was, “I avoid problems, and I don’t tackle my challenges, and I live in fear, and I’m emotionally unintelligent, so I have low emotional intelligence”, then what that’s going to do is that’s just gonna rear its ugly head when it comes to overcoming a dramatic life event.
Bill Gasiamis 20:41
And what you’re often dealing with is you’re not dealing with the stroke recovery, you have to unpack and undo and resolve all the past life events that are stacked up. And then once you kind of get through those, you can learn about how to go through potentially walking with a deficit, or not being able to use one of your arms or a more dramatic deficit than that. So does that resonate with you? Is that how your experience about the past came into play now into this after stroke version of you?
Blair Ames 21:26
I feel like for me, I was, you know, I was somebody that before stroke, I was very lucky. I certainly, wouldn’t say I faced a ton of adversity in life, until stroke, you know, outside of, you know, any standard education, work problems that are now just pale in comparison to having a stroke.
Blair Ames 21:47
So, for me, I think as soon as I had a stroke, I had recognized that, you know, I had been very lucky up into this point, in terms of having no other significant health problems. So I think I wanted to embrace, you know, the challenge of stroke recovery.
Blair Ames 22:08
And even with that, you know, there certainly have been points over the past two years, where that’s, it’s a difficult burden to carry. Especially when, you physically look fine, everything’s good. People think you’re, “better”. And you’re kind of, you know, every minute of every day is still affected by stroke, in a sense, and how you go about things. So no, carrying that burden of stroke and stroke recovery, especially as you get back into work life, you know, get back into all of your personal commitments. It’s, certainly a challenge to balance all those things, of course.
Bill Gasiamis 23:00
yeah. So this just occurred to me that perhaps for me, because I have a similar approach to the way or have a similar kind of way that I’ve got the stroke in that the things that I thought were problems weren’t really problems, I made them big problems. And then I had the stroke, and then I was very easily able to assess or what was a serious problem before the stroke, which really wasn’t.
Bill Gasiamis 23:29
And now what really is something that I’ve got to take seriously, and I’ve got to step up to. Before I used to complain about problems and not really do anything about them, because I could complain about them and get it off my chest for a little bit of then feel okay, and then just move on with the rest of my day.
Bill Gasiamis 23:46
What just occurred to me was, that perhaps for me, what it was, was new, emotional states I had never experienced before and new mental states I’d never experienced before. And that inability to know how to react or respond to that made it very difficult because that meant I had to stay in those new emotional states negative mostly, and then negative mental health space for a bit longer than I was comfortable with.
Bill Gasiamis 24:20
And then it’s like, Okay, remember the ones where you used to be able to just push them aside and pretend that they weren’t there. This is not going to allow you to do that. You’ve got to tackle this. And you’ve got to resolve it. And I don’t know how long that journey is going to take. Because I don’t know how long the stroke incident is going to continue for.
Dealing with new emotional statesBill Gasiamis 24:43
And for me, it continued for nearly three years before I had surgery to remove the AVM and then I had to deal with not being able to walk again and all the stuff that the surgery caused, and then living with all the deficits that I live with every day, which is the left side numbness, the pins and needles, the proprioception issues, and the fact that everyone thinks I’m perfectly okay. Because I look okay. So, any of that sound familiar? Is that kind of where you’re at? Or are you somewhere else?
Blair Ames 25:20
Literally everything you just said sounds familiar. No, I agree with everything you just said. 100% when you were discussing the emotional states and how they’re new emotional states that you hadn’t dealt with before, I think for me, I’ve definitely noticed I’m more irritable than I was before.
Blair Ames 25:53
In the hospital, my mother, my sister, Mallory my fiance, they all told me to a tee that I was being mean, I was being rude. And at the time, I wasn’t doing anything like that intentionally. So that was something that I struggled with. And as I continued in recovery, up until now, about two years post, I still find myself getting easily frustrated over things.
Blair Ames 26:28
Whether it be a work assignment, or if just, you know, kind of, I’m not feeling too great a day, and we had some plans. And now I have to manage that. I do find myself getting easily frustrated to this day. And that’s something I’m working through for sure.
Bill Gasiamis 26:46
Are you comparing the old Blair and going oh, man, this used to be easy, why can I do this? How are you getting frustrated? Is it at yourself? The situation? How specifically?
Blair Ames 27:00
Oh, yeah, a good question. I don’t, I don’t think it’s because I compare myself to the way that I used to do things. I think I’m just annoyed by the current situation. And that it’s, you know, I’m two years after stroke, and I’m still, you know, still not back to where I feel I need to be. So it’s more of just an you know, it’s I’m tired of dealing with this day by day type frustration. So I most most days are okay, at this point. But there certainly are some moments where you know, those post stroke feelings kind of rear their ugly heads for sure. Yeah.
Setting a stroke recovery deadlineBill Gasiamis 27:42
Yeah. So did you perhaps have a timeline or a deadline that you thought this was going to be all resolved by and you haven’t reached it? And that’s part of the thing that’s getting in your way, about how you feel about the whole thing?
Blair Ames 28:00
No, I certainly learned early on that setting, arbitrate deadlines in recovery is a bad idea. I think for me, as I progressed pretty quickly, in those initial weeks and months. Like by the end of that first year, I had assumed alright, we’ll be back to normal by four months by five months by six months.
Blair Ames 28:27
And then once you hit those, those checkpoints, and you realize how far you feel you still have to go? Yes, it’s hard. It’s devastating to deal with. So no, I’ve kind of given up on setting deadlines. I prefer to just set monthly goals of something I feel like I can accomplish over the next 30 days. That makes me feel like I’m still moving forward in stroke recovery. So no, I agree. setting deadlines is not an optimal way to go.
Bill Gasiamis 29:04
Yeah. So how far have you come tell me about what you were faced with? What the deficits were and then how far you’ve come? And, of course, those deficits are not just the physical ones that could be fatigue and other things.
Blair Ames 29:19
Yeah, of course, well, in the hospital, I was told I was completely paralyzed on the left side, ended up staying in the hospital for about a week and a half to two weeks, and then went to an inpatient rehab center about same timeline. A week and a half, two weeks.
Blair Ames 29:41
I left the inpatient rehab center, I was able to walk out on my own with the assistance of a walker. So the physical deficits I do regret in those early weeks. I never let anybody take any photos Those are videos of me because I was just incredibly embarrassed that, you know, I was using a walker, that when I, when they would get me out of bed, I would kind of collapse on to the physical therapist or the occupational therapist.
Blair Ames 30:16
And then some of the other machines that they put you on to help you learn to walk again, I was really embarrassed by that, you know, somebody in my early 30s. And here I am, you know, I can’t get out of bed on my own. In terms of other deficits, once I returned home, you know, certainly vision has been a bit of a struggle for me, extended computer time at work.
Blair Ames 30:47
I definitely, you know, try and take breaks get outside. But that’s still you know, a bit of a nuisance here and there. Obviously, just riding in cars and being dizzy was a real struggle at the beginning. And then I’ve really struggled with with sleeping after stroke, it took me the better part of a year to realize that there was a consistent problem here.
Blair Ames 31:16
But I woke up at about 1:30 in the morning, pretty consistently, and then struggled to get back to sleep after my stroke, so that the not sleeping was a big was a big problem, which obviously contributed to that post stroke fatigue feeling. But yeah, I don’t I’m not sure I had any unique post-stroke deficits. It was all kind of what I’ve heard other stroke survivors talk about.
Bill Gasiamis 31:48
You know, this sleep thing. So does that mean that you’re getting less than five or six hours sleep at night at the beginning?
The importance of sleep in stroke recoveryBlair Ames 31:59
It must have because, it was so frustrating, because I would have no problem falling asleep. And I’ve recognized early on how important sleep is going to be to recovery. So you know, I’m trying to fall asleep between 10 or 11. And I would have no problem falling asleep whatsoever.
Blair Ames 32:21
And in the middle of the night I wake up, be wide awake, we use the restroom, and then not be able to fall back asleep. And it’s like, let me look at my phone. And it’s 1:30 again. So for me, after that Some nights I would fall back asleep other nights, I would really struggle to fall back asleep. So in those early months I was I’d say I definitely getting less than five to six hours most nights.
Bill Gasiamis 32:50
Okay, here comes the diagnosis from our first meeting ever and my professional opinion as a stroke survivor. So what I learned about sleep because I suffered a little bit about sleep. And this is just food for thought for people to hear about. And maybe it is for them, maybe it’s not, and I’m not a doctor and don’t take any of my advice.
Bill Gasiamis 33:11
But what it could be it could be the adrenal situation, adrenal glands, it could be something to do with the pituitary gland, it could be to do with the thyroid. If you’re waking up in the middle of the night, at the same time, it’s potentially an excessive amount of the stress hormone cortisol occurring at that time and interrupting with your sleep cycle.
Bill Gasiamis 33:38
So cortisol is part of the sleep cycle. And it usually comes at sunrise, it usually decreases melatonin. And then as melatonin decreases, cortisol increases. And then what happens is, you start to get awake in bed, and then a couple of hours later, an hour and a half later, the cortisol drops off, and you just go into your regular day.
Bill Gasiamis 34:03
Now, additional cortisol spikes happen when you have a coffee. They also happen when you go for a drive to work and there’s traffic and somebody cut you off. And then when you get to work and your inbox is full, but cortisol, because of the adrenal glands happening in the middle of the night, is what causes people waking is part of what causes the people waking.
Bill Gasiamis 34:30
Now what we do is we get into our heads and then at that moment, when you get into your head and look at your phone, you’ve completed the circuit to stay awake. And what’s really necessary to do is to walk out of your bedroom and not look at the phone if you can, perhaps read a book or do something but outside of the bedroom so that your bedroom becomes a place of just sleep and not awake time.
Bill Gasiamis 34:57
So that you start to kind of habituate your already, so that as you walk into your bedroom, and as you’re in the bedroom, you’re only in the bedroom for sleep time, not tossing around time and not wondering why the hell am I awake again time and all that kind of stuff, right?
Bill Gasiamis 35:15
So just a few little bits and pieces of stuff that is coming back for me because I also experienced that. And even a couple of nights ago, I woke up at 2:30. And my regular routine when I wake up is I wake up because I’m thirsty. But then, of course, while I’m awake, and I’m thirsty, and I have a drink while most I go to the toilet, and then come back and then fall asleep.
Bill Gasiamis 35:42
And usually, that works. But this time, I wake up at 230. And I couldn’t go back to sleep. So I stayed out of my room for a while, then I went back into the room, and then I fell asleep at around five o’clock. And then I woke up at seven with the alarm. So it’s not uncommon for it to continue to occur from time to time, and I’ve kind of taken it as well, if it’s happening today. I’m just going to have to deal with it today.
Bill Gasiamis 36:14
And I’ll be better tomorrow. And I always tell myself, I’m going to this is a loss for me tonight, I’m going to give you the win. And tomorrow, I’m going to catch up. And usually that meant that last night I went to bed at around 9:30. And this morning, I woke up really well at around 6:30.
Bill Gasiamis 36:36
So you kind of give yourself the opportunity to catch up later rather than over, over, kind of think about it or get concerned about it or frustrated about it. But it does. I know I know that it’s hard because it means that that day, you’re going to be less than an optimum state.
Bill Gasiamis 36:55
And I definitely used to suffer that day. Quite a lot. So what do you do? What did you do to sort of start to get back into the routine? Did you notice that your sleep improved gradually on its own? Did you need some help with that? How did you get better at that?
Blair Ames 37:18
I’ve experimented with a ton of different just lifestyle adjustments supplements over the past two years. Because like I said, for me, it took me the better part of about a year and a half to actually realize something was wrong. Because for the most part like when you wake up in the middle of the night, like you said sometimes you’ll just get a drink of water go to the bathroom and then you can’t fall back asleep and that you know that that happens that’s normal.
Blair Ames 37:53
Sometimes it was you know an excuse of there was a loud noise outside there were neighbors were loud. excuse of you know, we stayed out too late. I was on my phone too late, I had trouble falling asleep. So I’m you know, I’m a real psycho and I write down what time I go to bed every night and what time I wake up. So I was looking for patterns to see what was going on here.
Blair Ames 38:21
And like you had alluded to, it’s very easy to put too much pressure on yourself to fall back asleep. And then that prevents you from falling back asleep. So I totally agree with your your proposal of you know, sometimes you’d have to get out of your bedroom for a little bit.
Blair Ames 38:40
So certainly for me when I do have a rough night of sleep I do try and go to our spare bedroom or just lay down on the couch for a little bit to try and sleep somewhere else. But some of the most effective practices that I’ve used over the past two years, one of my absolute favorites is drinking tart cherry juice. I found that to be Helpful.
Blair Ames 39:11
How is that helpful man? Please.
Blair Ames 39:16
Oh I enjoy the taste. So I enjoy drinking tart cherry juice a couple hours before bed.
Bill Gasiamis 39:25
You’ve said the word tart. And I had the experience of the tart thing that happens in the back of your mouth when you eat something tart. So that’s why I had to ask that question I’ve reacted immediately.
Blair Ames 39:38
I know not everybody enjoys the taste of cherry juice. I’ve enjoyed it. It was interesting tart cherry juice is a big one. Taking l’theanine was a big supplement for me. And then also trying to get outside as the sunsets. That’s another big one. And then the last one, which was a really basic, simple one is just taking a hot shower, you know about an hour and a half before bed. So I try as as often as I can to combine those four practices together. And for me, as of today, I’m sleeping better now than I did before my stroke. And those nights where I wake up at 1:30 are very few and far between.
Bill Gasiamis 40:39
That’s good. That little trick of seeing the sunset, that’s great, because that does start to bring on the melatonin and start to decrease your cortisol levels. So that’s really good. switching off lights, if you can, that are above your head helps and just put on really warm lamps in the corners of the rooms that you’re going to be spending some time in.
Bill Gasiamis 41:03
Also little bits of things that might help. A really good book that I’ve recommended to a lot of people is a book called The Sleep book, How to sleep well, every night by Dr. Guy Meadows. And he’s from an organization that he calls the sleep school.
Bill Gasiamis 41:19
And I’ve read a couple of books about sleep. And one of the best ones that I read about sleep, which was good to give you an insight in what sleep is and how sleep works. And all that kind of stuff was, of course now just escaped my mind as I started, Why We Sleep by Matthew Walker.
Bill Gasiamis 41:46
It’s a great book in that it gives you a great insight into what sleep is. Scientifically, it has been a little bit poo pooed by his peers, because they question his scientific method. But if you’re interested in sleep, ideas, and how sleep works, and all that kind of stuff, it’s still a really great book.
Bill Gasiamis 42:13
Because if you’re like me who’s not scientific, you don’t really mind how he tells the story, and why he tells the story. So I got so much out of that book, that was such a great book. But then, for tips and tricks that will support sleep, this book by Guy meadows, is a really good read.
Bill Gasiamis 42:37
It’s easy, it’s short, it’s not too overly scientific. But it is based in a scientific method, because what he because he’s the sleep guru or sleep guy, you know, or he has the sleep school. They have a lot of data. And they have a lot of evidence to show the things that are proven to work that support the sleep cycle. So anyone listening wants to just go and check out the sleep book by Dr. Guy Meadows. And then Matthew Walker’s book was a game changer for me.
Blair Ames 43:16
Thank you for that. I love a good book recommendation.
Bill Gasiamis 43:19
Yeah, you’re welcome. Just another version of Matthew Walker’s book. In a more succinct, more nuanced kind of approach towards sleep. It’s just very, to the point, you know, there’s not a lot of filler, you know, not that Matthew Walker’s book is like that.
Bill Gasiamis 43:41
I really, I gotta say, well, Matthew Walker’s book was the first one I read. That just changed my idea about what I was trying to do and how I was trying to go about sleep and why I was sleeping and all that stuff. You know. So guy Meadows is the is that this is what we know works for people kind of book.
Blair Ames 44:04
That’s great. I’ll put that one on my list. Thank you.
Managing time for stroke recovery
Bill Gasiamis 44:06
Yeah, check it out. So it’s only been two years in my estimate, on your overcoming your challenges. So which means that you’ve come a long way, and you’ve got a long way to go. Right? And I only say it’s only been nearly two years, because I just mentioned my challenges, and it’s been 11 years.
Bill Gasiamis 44:29
So it’s not like you haven’t come a long way already you have and if you’re the type of person who is curious as you are, and has put some time and effort into discovering what’s going to help you and support you and you continue doing that. By the time we get to 10 or 11 years, you’re going to have this nailed down and you’re going to have a routine that works for you.
Bill Gasiamis 45:00
You’re gonna have a clear in your mind and in the way that you go about life, and that’s going to make your life a lot easier. So last night, for example, it was a Friday night for us. And we usually do something on a Friday night, we go somewhere, you know, we go out, we catch up with some friends, whatever.
Bill Gasiamis 45:18
And for me, if I had done that, today would have been a really difficult day for me, it would have been tiresome, I wouldn’t been able to be productive. I certainly wouldn’t have enjoyed being on the podcast, even though for my guests, I always turn up and I try and do my best.
Bill Gasiamis 45:35
So I’m at that stage where all of those things that I’ve learned about how I need to act/behave, or prepare. They’re almost non negotiable. If I didn’t go to bed at 9:30, on a Friday, today wouldn’t have been a good day. So it’s not a sacrifice anymore.
Bill Gasiamis 45:59
It’s not like I’m missing out on anything that I used to feel like I was missing out on now what I’m doing is going, I need to be good on Saturday, because I don’t want to spend the whole day on the couch doing nothing and being unproductive.
Bill Gasiamis 46:13
So as you move into your recovery, and you start getting better at it, and by the way, you’re going to continue to recover, you’re going to continue to feel better, you’re going to continue to dial in all those little things that are challenging you.
Bill Gasiamis 46:29
What will happen is you’ll feel really good about where things are at regardless of whether or not you have a deficit and a bad day, one in every 10 days, it won’t really bother you. How do you feel about the future? Going forward? What is your Have you contemplated at all?
Blair Ames 46:52
Yeah, well, no, certainly, Bill, I appreciate your your kind words and encouragement. You know, I’ve certainly enjoyed your podcasts over the years for that just to to learn about how you’re going to progress over the years. I mean, I think I certainly recognize I’m still very early on in this process only being two years. I’m certainly hopeful that, you know, I’ll continue to get better and perhaps, you know, obviously have days where the stroke doesn’t affect me as much as it does today.
Blair Ames 47:29
I guess for me, I feel like I’m at that point in recovery, where Like, I’m back to doing everything that I need to do. And it’s really just a matter of, of managing everything kind of like you were discussing where you know, you have to go to bed around a decent hour on Friday, or else you know, Saturday, you won’t be very lively. When you said that I I agree with that wholeheartedly, and I saw myself in your habits, I feel the same way.
Bill Gasiamis 48:03
Yeah, that’s what I found. And that’s what I encourage people to think about is to think about how with time and studying and becoming more educated about what they need, they will be able to create a routine for them, that works really well.
Bill Gasiamis 48:20
And that means they’re going to enjoy a lot of their life. Rather than pushing through for the sake of old habits and old behaviors and old patterns for other people and then suffering through the rest of the next week. And the next weekend or whatever. And I just can’t do that, I don’t drink any more when I go out. And if I do I have one drink and then people who drink with who I used to drink with will say, you know, they’ll say well, just one, you know, that’s it.
Bill Gasiamis 48:57
You only gonna have one, can we have another one? Or can we keep drinking or whatever. And it’s like, I can’t do that. I’m not going to do that. And I know that you need to or you want to, but I’m not that way anymore. I can’t do what I used to do with you for you or whatever. How do you feel your relationships are changing and evolving as you navigate being out and about with people? Has that been different?
Avoiding alcohol after a stroke
Blair Ames 49:35
Yeah, man, this our conversation, I’ve really enjoyed it thus far, because so many of the things you’ve said, have rang so true to me. And as you were just discussing, you know, I don’t drink that much myself anymore. I’m like you if I go out I might have a drink here or there. But most nights I really just don’t.
Blair Ames 49:59
Don’t really You have the desire to have a drink anymore. And I’ve certainly gotten the comments over the past two years of, you know, why aren’t you any fun anymore? Why don’t you just have a couple of drinks? Why doesn’t Blair loosen up and have a couple of drinks?
Blair Ames 50:18
You know, when are we going to be able to do the things that we used to do type comments? And it’s certainly been tough at times. But for me in terms of having a drink of, you know, I could take it or leave it. And I think people are maybe starting to understand I don’t have a desire to drink a lot anymore. But certainly over the past two years, it’s been a bit of a learning curve for sure.
Bill Gasiamis 50:52
Yeah. It’s interesting with people who drink they need somebody to drink with. It’s so weird. I don’t get that. What if I’m just drinking sparkling water? Or a soda water next to you in a glass that appears like an alcohol class? Can I do that? Even that’s not enough? It’s kind of like, I need to be under the influence of alcohol so that you feel good about yourself being under the influence of alcohol? Like I’ve got to make it normal for you. I’ve got to normalize it. It’s really strange.
Blair Ames 51:30
No, I 100% I agree with you. And for me, I guess I’m glad I got my my drinking habits out of the way when I was in my 20s. I enjoyed it plenty, then, because I’m not really interested in all that anymore. But as I’ve transitioned to, to not drinking as much over these past two years, I’ve certainly realized what you have where it’s almost as if in terms of alcohol, it’s like, if you don’t drink, there’s something wrong with you.
Blair Ames 52:03
Whereas if you drink it’s, you know, is what you’re supposed to do. So that’s been an interesting realization for me is when you’re at an event, or you’re out and people see your you’re not having a drink, it’s do they assume something’s wrong with you.
Bill Gasiamis 52:21
And not that something wrong with you, which there actually is not like, they assume you have a medical issue, they assume you have a personality issue, isn’t it? Exactly, yes. That’s interesting. I’ve never thought about it like that before. But that’s exactly what they do. They make your personality, not the right kind, and not the right type, because you’re not drinking.
Bill Gasiamis 52:46
And the fact that you really actually have something wrong with you, is not relevant to their reasoning. And to their problem with you not drinking, they can’t come to terms with that. And maybe you’re also because you don’t look like you’ve had a stroke, so to speak, you’re also giving false signals as to, perhaps their eyes, so that they don’t grasp the concept of why he looks great, you know, and he talks about all this stuff, but I can’t see it. So you know, maybe he’s just become boring. Who knows?
Blair Ames 53:28
For sure, it’s, you know, if I go out here and there, I might feel the need to have a drink. But like I said, it’s just not really something that appeals to me anymore. Because I know it doesn’t really, it doesn’t help me feel any better. So I’ve, I’ve kind of lost interest in in that regard.
Bill Gasiamis 53:47
Yeah. And it says a lot about relationships that we’ve formed, that were formed, around drinking, and how shallow that relationship might be. And the depth of the relationships that we need to help get us through this time and to actually going to have decent, long term relationships with our family members or our friends.
Bill Gasiamis 54:16
It says a lot about perhaps also where they’re at in their life, and how their inflexible in flexibility is impacting the relationship in that they only relate to you as a person who is somebody who behaves a certain way who is more fun to be around or whatever it is. And that’s interesting that they’re in flexibility is turned into your your problem it’s made, you know, it’s kind of outsourced to you and that’s how I felt.
Bill Gasiamis 54:50
It’s like, I’m not telling you not to drink, man. I’m just telling you that I’m not drinking you know, leave me alone. I can’t do think and feel like I’m having another stroke again. I’m going to show if you understand what that means, I can’t do it. So you go for it. Or power to you, but just leave me out of it’s not a lot to ask. It’s such a simple thing to ask.
Blair Ames 55:16
No, exactly. It’s just like, you know, people still, if I ever hear a comment like that, normally I don’t pay much attention to it anymore. I’m very happy drinking my water, or whatever else it may be.
Bill Gasiamis 55:27
Yeah. So Mallory, your girlfriend at the time became your fiancee? How long after the stroke did she become the fiancee? And did you pop the question?
Blair Ames 55:42
Oh, yes, I see. I’m glad you asked that. So we had been dating. How many years we have been dating maybe three years, two and a half, three years at the time of my stroke. And I was actually, I had already been shopping for an engagement ring. I had the ring picked out. And on the day of my stroke that Saturday, I was supposed to call the jeweler to schedule an appointment for the next week to go pick out you know, the center stone.
Blair Ames 56:17
So of course, I didn’t get a chance to call him that day. I think I ended up calling him from the hospital a couple days later. And I was just like, hey, Sergio, you’ll never guess what happened, I guess I’ll see you in a couple of weeks. So I ended up going to see him. We’ve got the ring probably six to eight weeks after my stroke. And then I proposed to Mallory in September of that year, so about four months after the stroke. So we are four months delayed.
Bill Gasiamis 56:55
Yeah, that’s okay. She said yes. And was that a relief to you? Had you created any stories or any thoughts in your head about how that might go? Because of the stroke, because sometimes after these incidences, relationships change. I’m not questioning Mallory, or any anything like that. I’m just curious about what was going on in your head?
Blair Ames 57:26
No, of course. Well, I know she’ll appreciate you asking that. But she’s always been 100% supportive of me. And and I think, you know, our relationship over the past two years, was challenged because of the stroke for sure. But I think you could also argue that it’s been improved, because of the stroke now that we’ve gone through this together. And I mean, for me, I was just very disappointed that I hadn’t proposed to her sooner as I had a stroke, and as I was recovering.
Blair Ames 58:08
Because it just, there was a point in recovery. Where as we discussed earlier, it kind of dawned on me how close I was to not making it. And I think in the worst case scenario, if that would have happened. And I didn’t have the chance to propose to her. That thought devastated me. So after the stroke, and as I recovered, it was it became more and more of a point of I have to do this sooner rather than later.
Bill Gasiamis 58:49
Yeah, right. That was a little regret kind of looking around was it.
Blair Ames 58:56
Yeah, just as you look back on your older self, and it’s like, what was Why did I not do this sooner? You know, why did I almost not make it to this point of being able to do this?
Bill Gasiamis 59:09
And out of curiosity, why do you think you delayed that event?
Blair Ames 59:15
It was actually, my sister was getting married around that time, I was shopping for a ring. So that was part of it. Just that, you know, we were going through that with her. I don’t know, maybe it was just, I just was little too immature to get married.
Blair Ames 59:34
You know, I need to mature a little bit as I got through my early 30s. But I don’t know it was something I had been thinking about for a while and I just never really you know, I’ve been thinking about a ring. I just kind of never pulled the trigger, so to speak.
Bill Gasiamis 59:51
Yeah. Yeah. Well, look, it’s not uncommon people question that all the time that they should I should and I will To say, it’s pretty standard, you know, that’s nothing to be to feel bad about, but I get the part of oh my gosh, I almost never got the opportunity to and then that wouldn’t have been nice, at least then you would have had expressed your deepest desires.
Bill Gasiamis 1:00:20
And you would have been able to give that person the opportunity to know what your deepest desires were. And I think there’s an there’s a level of in a relationship is there’s there’s something really, really deep and meaningful, not just about the fact that you’re living together, but the fact that you’re prepared to ask such a serious question.
Bill Gasiamis 1:00:46
Which is, this is how I think of you like this, I don’t just think of you as somebody who we live together, and we’ve spent three years together, I think of you like this, I think that’s a really kind of deep, you know, emotional message that you’re sending to that person and to have the opportunity potentially go would have would have been a thing that wasn’t able for Mallory to experience.
Bill Gasiamis 1:01:23
And then I think that’s kind of where the both the for you, you’re kind of lost would have been in that phase. But also, she would have the loss of not experiencing the deep meaning of what it means for you to ask her the type of question that you were really hoping to ask.
Blair Ames 1:01:48
Yeah, and as we were discussing earlier, just about when the severity of the situation hit me, that was certainly part of that experience for me, you know, just realizing kind of what’s, what would have been left undone, so to speak. That was really eye opening as I progressed to recovery in those initial weeks and initial months.
The current status of the AVMBill Gasiamis 1:02:14
So how did they resolve this AVM in your head? What did they do to resolve it? What’s stage is it at now?
Blair Ames 1:02:24
Yeah, well, I guess it’d be appropriate to say I still have it. It was in the right basal ganglia. And it was just since it’s, it’s really right there in the center of my brain. It wasn’t it was to it was unsafe to operate on it. So I’ve been undergoing radiation treatments. And I’ve had one or two thus far, and it’s been all the progress from the doctors has been positive. They they said on this on the CT scans on the MRIs, it’s closing up. So in the coming years, I will continue to go through all the MRIs, the CT scans, the angiograms, and hopefully, radiation treatment will resolve my view.
Bill Gasiamis 1:03:17
So is that radiation treatment, what they commonly refer to as gamma knife?
Blair Ames 1:03:24
I believe that’s correct. Yeah. I think mine’s I think what the device I was under was called the CyberKnife. But yeah, I think that’s correct.
Bill Gasiamis 1:03:30
Right, right. How does it feel when you go through that procedure when they zap your brain with radiation
Blair Ames 1:03:38
I have the helmet right here that holds your head down on the table.
Bill Gasiamis 1:03:47
Lift it up for us in the middle of the screen. And for everyone listening who wants to see it, I’ll post a picture of it in the show notes. And then if you go to the YouTube video, you’ll be able to see it as well. I’m definitely going to use that as the thumbnail of this podcast for sure.
Bill Gasiamis 1:04:07
And we’re gonna get you to pose with it later, before we end the show so people can see it straight away. So So what they do is they lay you down and then they put that amazing helmet on your head and what does that meant to do?
Blair Ames 1:04:25
This is just meant to hold your head in place to make the best of my understanding is to hold your head in place so they do not zap the wrong parts of your brain. And the you know, the the the radiation treatment itself may have been about an hour, hour, hour and a half for me and it’s certainly certainly wasn’t painful in the moment.
Blair Ames 1:04:53
You know, the after effects. You definitely feel it that day in terms of just the fatigue But it’s very, very difficult to get into a car afterwards. Very easy to just get dizzy standing up too quickly. So the the procedure itself, thankfully, is is painless. It’s the the after effects in the in the days and weeks afterwards that can be a little difficult. But for me I, I was pretty much fully recovered after a few days, I reported back to my neurosurgeon that I didn’t need any additional medication painkillers, anything like that I was able to bounce back pretty quickly.
Bill Gasiamis 1:05:40
And the second time, what’s more familiar? Does that make it easier? Does you get through it a lot better?
Blair Ames 1:05:48
Yeah, no, I just got going through the process, you know, multiple times and being there in the facility kind of knowing what the steps are. It was the honestly the hardest part for me, was the first time I had requested a certain Pandora station be put on my headphones during the procedure.
Blair Ames 1:06:09
And unfortunately, they ended up choosing like a Mexican pop station. So I was hoping for a different form of music. But I ended up laying there for the better part of an hour. Listening to like I said, sounded like Mexican pop music, I wasn’t quite sure what what it was, it was like Mexican salsa or something that made it uncomfortable.
Bill Gasiamis 1:06:39
They might have done it on purpose. I love that idea that the music made it uncomfortable. But it’s really important, isn’t it because it helps you focus concentrate, and get distracted from what’s going on around you. I remember going into the MRI, and then listening to, again, the local radio station, which was terrible. And you had to be in there for 30 or 40 minutes.
Bill Gasiamis 1:07:05
And just hoping that it was over. And then as I got to understand that I could request my own music, I took a guided meditation in with me. And that guided meditation, it lasted for the duration of the MRI. So not only was I meditating, putting myself into this space of feeling really calm and comfortable and all that kind of stuff.
Bill Gasiamis 1:07:29
The procedure just felt like minutes instead of 40 of them, you know, just felt like a couple of minutes. But everyone’s got, I reckon an experience with an MRI or gamma knife or something like that, where they have to remain still for a long period of time. And choice of music is far from optimal.
Blair Ames 1:07:53
That’s a great, great idea from you to use a meditation, I had never thought of that before. I was just thinking what is my favorite type of music that I would like to listen to for this, I’d never thought of taking a meditation in there.
Bill Gasiamis 1:08:04
Yeah, because and then the meditation, what it also does is hopefully it calms the body relaxes the muscles, it decreases the cortisol levels, it settles your heartbeat, it settles your blood pressure, it does all of that stuff. So it kind of creates, it puts you into an optimum state so that you can be the best kind of patient for them on the day. So it helps with their procedure, I feel.
Bill Gasiamis 1:08:32
So that was my thinking behind it, as well as the fact that I love meditations. And if, if I’m on a meditation and it kind of puts me to sleep, well, then that’s better than being anxious and annoyed and frustrated at what’s happening with your head locked into the device that they lock it into. So you don’t move. But that’s good man, that you’re you’re progressing through that resolution as well.
The possibility of another AVM bleedBill Gasiamis 1:09:02
So to put this thing to bed, so to speak, has it been on your mind that they hadn’t removed that it was still there. And that it was hard to remove. Did you think about the fact that there was a possibility? Did they tell you that there might be a possibility that it re bleeds? How did you handle that part?
Blair Ames 1:09:25
Yeah, no, that’s that’s a good question. Um, for me, I was always advised that there was a very small chance that it would bleed again. You know, I don’t quite remember exactly the percentage they gave me. But I was always struck by as I researched AVMs myself and continued talking to doctors in the subsequent weeks and months after my stroke.
Blair Ames 1:09:55
That generally it seems like the the biggest precursor to an AVM rupturing is a previous rupture. So that was always a little unsettling. But over the past two years, it’s really it’s not something I generally think about. It doesn’t affect how I go about doing anything. I think I certainly hope I’m not in this situation. But if it were to ever happen again, I’m sure I would react a little differently this time around. But in terms of thinking about it on a day to day basis, I never really think about it.
Bill Gasiamis 1:10:40
Yeah, I like to think that you’re a smart guy, and that you would respond differently, I definitely responded differently. Every time I had a bleed, I was better and better and better. So mine bled three times. That’s why it lasted the whole process to surgery almost took three years, because they were hoping that wouldn’t bleed again. And they told me the same thing.
Bill Gasiamis 1:11:05
And I went about my life as normally as I could dealing with the deficits and the fatigue, and all that kind of stuff. But I still went about life. And I didn’t think about it on the daily. I’ve kind of mentioned that a few times. But my my motto in life is expect the best prepare for the worst. So I had contingency plans in place.
Bill Gasiamis 1:11:28
But I wasn’t going to go about being anxious about the fact that this thing would play it again, you know, we were we were just going to be proactive. If it did, we were going to do the right things and get help immediately. So that’s what we did. And and the third time when eventually, they bled the third time and they decided to take it out. It wasn’t me who said let’s get this thing out.
Bill Gasiamis 1:11:55
My surgeon said, it’s time to get it out. We need to get it out. We don’t want it to continue bleeding, it’s not likely that it’s going to stop bleeding. It seems like it’s one of the rarer ones that is that might continue to bleed. And that’s putting you at greater risk than surgeries. So we should go there, we should definitely get it done. Are you up for it? And I said, Well, yeah, I’m up for it.
Bill Gasiamis 1:12:19
Let’s resolve it one way or another. And that’s what we did. I like hearing your story, because you go about things in a very seems like a very calm, gentle way. You’re progressing really nicely. You know, you’ve overcome a lot of the hurdles, you’re aware of what some of the hurdles are, which is a really good thing, when you become aware that stroke recovery is not just about the physical recovery, it’s also about the mental and the emotional recovery.
Bill Gasiamis 1:12:54
That’s a big game changer, man, that is making your stroke recovery far better than it would have been. And that’s also allowing you to deal with all the stuff that arises between you and Mallory in your relationship. Because you’re realizing they’re part of my response, my lack of emotional awareness, perhaps, or my emerging emotional awareness or my awareness that now that it’s happened, I have reacted, but now that it’s happened, I’m aware of it so I can resolve it with you.
Bill Gasiamis 1:13:39
I can tell you that I’m sorry, because I wasn’t intended to behave that way or whatever. And I’m doing better. And that is taking out the stress in the relationship. And that creates a bit of space for recovery. And that makes her feel about the things that you guys are going through better. So you’re just doing great things. And that’s what I said at the beginning of the podcast episode.
Bill Gasiamis 1:14:04
It’s like, it’s so good to have you here after us being in conversation on and off for the last couple of years. And then finally, to get you here, it’s like, wow, man, that is brilliant. Firstly, I’m grateful that you found me when you did and that the podcast gave you hope. And now, I’m certainly grateful that you’ve recovered to a point where you felt like you could be my guest and we could learn from each other.
Blair Ames 1:14:34
Yeah, Bill, I appreciate those kind words for sure. And you know, as I mentioned earlier, your podcast and those early days. We know when I was too tired to really get off the couch, you know, just pretty much worked through some rehab stuff and then sat on the couch all day before I was back at work. Certainly your podcast was one of the most popular things I watched on YouTube in those days. So I guess I like to think Maybe I picked up some of my perspective, from you and from I learned a lot from you.
Bill Gasiamis 1:15:06
They’re beautiful. And all those awesome guests that have come on before you as well to be a guest on my podcast is such an amazing thing for people to just say that they want to be on my podcast is just oh my gosh, like, it’s just the most amazing thing for me that somebody wants to be on my podcast, I love it. So thank you. As we kind of wrap this up, I was just curious about what you feel stroke has taught you.
Blair Ames 1:15:33
You know, I think as I mentioned earlier, stroke recovery is everything that I didn’t expect it to be. You know, in those early days in the hospital, I was just running through my mind all of the physical exercises, I could do all of the things I could do to get physically better.
Blair Ames 1:16:05
And then once I got out of the rehab center, and once I was home, just working through everything and realizing that, you know, my emotions were were sky high some days, and then in the bottom of the valley the next day, riding that roller coaster.
Blair Ames 1:16:27
I think stroke probably taught me a ton in terms of just how do we maintain our well being is not all about working out. It’s, you know, you know, it’s not all about being active. That’s That’s an incredible, credibly important part of it. But I’ve certainly learned the importance of sleep. I’ve I’ve as I had already pretty much dialed in my nutrition before I was big on nutrition before the stroke.
Blair Ames 1:17:00
But I’ve certainly made some changes in that regard. And then just overall, you know, how do you improve your mental well being, I think I’ve really realized the importance of meditation. I’m very grateful that I had started a meditation practice before stroke, because that was something that I leaned on heavily over these past two years.
Blair Ames 1:17:24
So I think stroke has really opened my eyes to some things that before the stroke I just never would have even thought to pursue. It’s taught me a lot about how I can physically improve my well being, you know, outside of the gym, and I’m grateful for those opportunities.
Blair’s advice to stroke survivorsBill Gasiamis 1:17:49
Brilliant. As we get to the final question, I’d like to ask you, there’s people that are listening now that are waiting in the same stage of recovery that you were two years ago. They’ve just found the podcast. And they’re trying to get as much information as they can out of us so that they can be guided on their own recovery. What would you tell somebody who might be listening? Who’s at early stages of recovery? What are some of the things that you’d like to impart on them that they should know? Maybe one thing doesn’t have to be lots.
Blair Ames 1:18:29
No, of course. And that’s something I thought about a lot in terms of what would if I could go back and talk to myself in those early days, you know, what would I tell myself, because I hate to sound like a broken record. But as I mentioned, it’s like I was just so naive to what I was getting into.
Blair Ames 1:18:49
You know, I was so focused on physically getting better. And I had no idea about the physical and mental challenges that were coming down the road. And I was really never someone that resonated with the stay positive mantra. That was something that was just “Thanks, I appreciate your advice”.
Blair Ames 1:19:13
But I think if I could give somebody advice, who is in my situation, I would tell them to just embrace those challenges, embrace those early days of recovery. Because I think when you’re really struggling, is when you really find the opportunities to find innovative solutions. And instead of, you know, being upset about the situation, just embrace the challenge. And, and, and be ready to learn a lot and be ready to to improve over time.
Bill Gasiamis 1:20:00
Beautiful Man. Blair, thank you so much for being on the podcast.
Blair Ames 1:20:06
Hey, Bill, thank you. I really appreciate your time.
Bill Gasiamis 1:20:08
Well, thanks for joining us on today’s episode, you can see now why I was so grateful to have Blair on the show. He has come a long way in his stroke recovery journey, but he’s got some way to go. And he’s been able to learn a lot about what this journey the road that this journey has put him on, he’s learned about himself, he’s learned about things that he never expected, he’s grown as a result, and his recovery continues to occur.
Bill Gasiamis 1:20:42
And he continues to evolve, which is just amazing. To learn more about my guests, including links to their social media and other pages, and to download a full transcript of the entire interview, please go to recovery after stroke.com/episodes.
Bill Gasiamis 1:20:57
If you would like to try the course five foods to avoid after stroke, go to recovery after stroke.com/courses If you’d like to support this podcast, and now I’m going to explain why you must support this podcast by giving it a five star reviews because people like Blair, who have been listening for two years, get to feel a lot better about the way that their recovery is coming along, and then get to finally be at that point where they can get on the podcast.
Bill Gasiamis 1:21:24
That’s exactly what the podcast is meant to do. Paint that picture is give hope is show people that there is light at the end of the tunnel. And therefore I would love it if you left the show a review so that more people like Blair, who are at the beginning of their journey can find the podcast and as a result of that hopefully make a difference to their recovery.
Bill Gasiamis 1:21:51
It’s also something that helps the caregivers of the stroke survivors because a lot of caregivers reached out to me to tell me that the show has been really helpful. So any positive feedback on Spotify or on iTunes will really have any positive feedback on YouTube will really help and be really appreciated.
Bill Gasiamis 1:22:12
And it’s just going to make it easier for people like you and me to get what they are missing, which is what I was missing. When I was going on this journey. There was no podcasts in 2012, about the possibilities that I was going to get better after stroke. So it was a lot lonelier back then.
Bill Gasiamis 1:22:31
And I’m hoping that this podcast makes it less lonely for you. So that’s my request from you and then come and join me on the show. Come and be a guest on my show that interviews are not scripted, you don’t have to plan for them. All you need to do to qualify as be a stroke survivor, a caregiver of a stroke survivor or somebody who works in the field of helping stroke survivors.
Bill Gasiamis 1:22:57
So go to recoveryafterstroke.com/contact fill out the contact form. And as soon as I receive your request, I’ll respond with more details on how you can choose a time that works for you and me. We’re going to meet over zoom, the interview will be recorded it will go on YouTube, it’ll go on iTunes, Spotify, and everywhere else. And hopefully your interview with me will make a difference to some other people. So thanks again for being here and listening. I really appreciate you and see you on the next episode.
Intro 1:23:28
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals opinions and treatment protocols disgusting any podcast or the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed all content on this website at any length blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis.
Intro 1:23:58
The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice the information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.
Intro 1:24:23
Never delay seeking advice or disregard the advice of a medical professional your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be.
Intro 1:24:39
Call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department. Medical information changes constantly. While we aim to provide current quality information in our content. We did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content.
Intro 1:25:00
If you choose to rely on any information within our content you do so solely at your own risk we are careful with links we provide however third party links from our website are followed at your own risk and we are not responsible for any information you find there
The post The Emotional Rollercoaster of Stroke Recovery – Blair Ames appeared first on Recovery After Stroke.
Adam Wolfers is a father and a chef who has faced significant challenges in adapting to life after suffering from a stroke. However, he is making progress towards recovery despite the difficulties posed by the stroke.
The Cook Up With Adam Liaw
Instagram
Highlights:
00:43 Introduction
03:31 Adam Wolfers had meningitis
10:11 The ups and downs of striving for perfection
12:24 What is Cerebral Vasculitis?
18:58 Getting back to work too soon
22:05 The world doesn’t stop when you have a stroke
30:30 Being on a cooking show with Adam Liaw
38:47 Pushing through the challenges
46:10 The hardest part of the day
51:20 Getting back on the bike after a stroke
Transcript:
Bill Gasiamis 0:00
Are you having a bit of identity crisis where you don’t know exactly where you fit into the world at the moment?
Adam Wolfers 0:06
Yeah. Because everyone just kind of gets on with their own lives. I’ve noticed, I guess it’s as I sort of slow down and do nothing. I’m kind of like, oh, everyone’s just getting on with their lives. And it’s a bit of a funny one. Not fun, but pretty scary.
Intro 0:30
This is the recovery after stroke podcast. With Bill Gasiamis, helping you navigate recovery after stroke.
Introduction – Adam Wolfers
Bill Gasiamis 0:43
Hello, and welcome to episode 248 of the recovery after stroke podcast. My guest today is Adam Wolfers, a dad, a chef, a cyclist who experienced a stroke caused by cerebral vasculitis. Adam Wolfers, welcome to the podcast.
Adam Wolfers 1:00
Hi, how are you?
Bill Gasiamis 1:02
I’m well, man, thanks for being here. I’ve got awesome family scouting the world, you know, for stroke survivors that I should interview, a mate of mine a really good mate of mine was watching television in Australia here on SBS and I was watching a show that you were on.
Bill Gasiamis 1:22
It was a cooking show with Adam Liaw. And after watching the show and hearing your story, he goes, you should reach out to Adam and see if you can get him on the podcast. I thought alright, no worries. That’s exactly what I did. And you’re here. Tell me a little bit about what happened to you, man.
Adam Wolfers 1:41
So it all started, like this started the whole health scare basically started in the start of 2022. So January 2022, I got like, I was on holidays from work during Christmas period. That was kind of like when the COVID scare that second or third wave happened up in Queensland and the whole of Australia.
Adam Wolfers 2:10
And, you know, basically, as my background, I’m a chef. And you know, it’s a really stressful environment and hard working, and I’ve always been an overachiever in my entire life, which is.
Bill Gasiamis 2:29
Sounds like a predicament.
Adam Wolfers 2:33
Yeah. And, but basically, it all comes down to the start of my, accident it sort of started in December 2022. I got diagnosed with meningitis, who’s like, the viral meningitis.
Bill Gasiamis 2:52
Brain infection yeah?
Adam Wolfers 2:53
Yeah. So it’s like, basically the fluid in your spine, like your spinal fluid, which goes up into your brain. And that basically is like, it was, at the time, I didn’t know what it was, but it was, it came down to having meningitis.
Adam Wolfers 3:10
And basically the doctors, I did all these tests, and they, you know, did a COVID test. And so it’s like, it took me about 10 days for them to actually diagnose me with a meningitis. And so I had like, severe headaches, basically, like sensitivity to light.
Adam Wolfers had meningitis
Adam Wolfers 3:31
And so I basically, at the time, you know, it’s hard to explain, but I literally couldn’t get out of bed for two weeks. And I went to like, three different types of hospitals. And they basically, they were like, Oh, you’re overworked and just go away and just gave me a Panadol.
Adam Wolfers 3:54
And then basically, after about 10 days, I went to my local GP, and then he was like, Ah, I think you have meningitis. So he did all the tests. That was my GP. And he did all the tests, and he basically sent me to the hospital.
Adam Wolfers 4:14
And, you know, I went to the hospital, they do all these tests on me. And, you know, I was like, I think you need to do like a thing called a spinal tap. It’s like a lumbar puncture. It’s not very pretty.
Bill Gasiamis 4:27
I’ve heard one. Yeah, cerebrospinal fluid test, they test the spinal fluid to see what’s in it. For me, they were checking for blood, but for you, they were checking for the virus or something else.
Adam Wolfers 4:40
Yeah. And so they did that test. And then basically, they kept me in the hospital for a day because they do all these tests and scans on it. He can’t tell what it is and for another 24 hours, so after 24 hours, they were like you have meningitis.
Adam Wolfers 4:59
I’m like Ah, okay, that sort of makes a bit of sense. And they were kind of like, wondering where I got it from. But, you know, at the time was kind of like, oh, you know, it’s just another virus, I’ll get over it. And like, I didn’t think anything of it, because I had no idea about what was going to happen next.
Adam Wolfers 5:21
And so basically, I took, you know, two, three weeks off work, just relaxed at home. And basically, when I got home from the hospital, I literally got COVID, like, two days after coming out of hospital.
Adam Wolfers 5:40
And I think that’s sort of the combination of the two, like COVID, and COVID was nothing compared to meningitis. And that, you know, I was basically I had COVID and I took three weeks off work. And then I slowly went back to work. And, three months later, I had the stroke.
Bill Gasiamis 6:15
So the meningitis is a virus that says he a viral meningitis, when the meningitis is caused by a virus, the most common type of meningitis. Most people get better on their own without treatment.
Bill Gasiamis 6:34
So is that the idea of sending you home? And just helping you get over it? And so it’s just affecting your brain, it’s affecting how you feel? You’re not able to do much, but it generally goes away.
Adam Wolfers 6:47
Yeah.
Bill Gasiamis 6:49
And are they treating it with medication anything like that?
Adam Wolfers 6:52
No, not at that time, they were just kind of like, ah, you know, go home, take a Panadol if it gets worse, but you know, I didn’t need that at the time.
Bill Gasiamis 7:03
Okay. So meningitis, you can get by breathing in viral particles that have been sneezed or coughed into the air by another infected person. It doesn’t sound like it’s extremely infectious because you don’t hear too many cases of viral meningitis.
Bill Gasiamis 7:20
But it’s spread the same way that a cold or a flu or COVID is spread. And you happen to pick that up, and then you happen to be at the wrong place at the right time again, and you picked up COVID. So the, how long did COVID put you out of action for?
Adam Wolfers 7:37
About a week I think the COVID was nothing compared to meningitis. But on top of that, I’m, autoimmune as well.
Bill Gasiamis 7:50
And what autoimmune condition, have you got?
Adam Wolfers 7:51
I have a sort of colitis, it’s like a Crohn’s disease, so yeah, I was on lots of nasty medications. So I think that’s kind of the combination of everything. Me working too hard, you know, getting like that meningitis, COVID. And then basically, on top of that, I’ve been cycling very hard, like too much.
Bill Gasiamis 8:21
You’re putting a massive load on your body. Basically, it’s dealing with colitis, ulcerative colitis, it’s dealing with recovery from meningitis, it’s dealing with recovery from stroke, from a COVID.
Bill Gasiamis 8:41
And you’re just going full on hammer and tongs. Do you always remember being that busy in your life? Was there ever a moment in your life where you’ve been able to do little or nothing and feel like you’re actually contributing to your health and well being?
Adam Wolfers 9:02
No.
Bill Gasiamis 9:02
Just on the go?
Adam Wolfers 9:05
Yeah, that’s it. Because, like, that’s my personality and like, always, trying to strive for the best thing or like always putting 110% in everything I do. And I think that’s sort of the, the, you know, it’s not the cause, but it’s a contributing factor to the whole health situation.
Bill Gasiamis 9:32
Yeah. Are you a perfectionist? Is it does it come from something like that?
Adam Wolfers 9:37
Yeah, I’m a very creative perfectionist. So in my work, I was kind of like sort of high up in my field, not high up, but like stress is pretty high up. But you know, I can’t really work out what had happened.
Bill Gasiamis 10:04
And at that time in your career, have you got people reporting to you as well? You’re not just working solo?
The ups and downs of striving for perfectionAdam Wolfers 10:11
Yeah. I’ve always worked in like fine dining restaurants my whole life and when he is, like 20 odd years as a chef, and I’ve always sort of tried to over exceed in what I’m doing.
Bill Gasiamis 10:31
And there’s an upside to that as far as career is concerned, people recognize your ethic, your talent, and the way you go about work. It probably does help with your career right?
Adam Wolfers 10:41
Yeah that’s it.
Bill Gasiamis 10:43
Does it interfere with other parts of your life, other than your health and well being? Being always that prepared to go the extra mile at work?
Adam Wolfers 10:52
Yeah, I think, because I have two very young kids. At the time, while I was immersed in my career, my career was always, you know, the number one. And so number one was my career, number two was, you know, my family.
Adam Wolfers 11:11
And so now I’m kind of like, once it’s all slowed down, I’m like, Oh, wow, the world is basically around me and going longer out everything that that it does. And so it’s been really nice.
Adam Wolfers 11:29
It’s been a one year anniversary today from accident. But I think I’ve, you know, I’m still learning to, like, accept what has happened. It’s gonna take a while. But I think that’s the biggest thing is acceptance, that everyone’s been saying.
Adam Wolfers 11:54
But I think, you know, it’s been really nice, because at the moment, I’m basically not working. I’m in across paths at the moment. And, you know, it’s been really nice to hang out with the family. So just, you know, seeing the kids go to school, cooking at home, all the little things that I never had done before, or got the opportunity to do before I now can enjoy it.
What is Cerebral VasculitisBill Gasiamis 12:24
So then all in all that time, so you had meningitis, you had COVID. And then you had a stroke. Just after that three months later. So what kind of stroke was it?
Adam Wolfers 12:39
It was like inflammation in the left side, because it wasn’t a hemorrhage, it was a blockage. And the doctors at the time, they were kind of like, they didn’t know the exact cause of the stroke.
Adam Wolfers 13:01
Because they couldn’t read my brain scan because they were like, Oh, this is such a weird brain scan. Because they couldn’t give me an exact cause.
Bill Gasiamis 13:17
So they called it cerebral vasculitis. And it presents as a stroke. So something happens to the blood vessels and then as a result of that, it stops the blood vessel for being able to send blood through it, perhaps narrows in size, and then as a result of that causes a stroke by a blockage that’s not a blood clot, right?
Adam Wolfers 13:43
I don’t know if I have, like they sort of said it was vasculitis. But, I have one of my luckily, you know, the guys I ride with they’re kind of like, in the medical field. And one of the guys is, I wrote this down he’s like a brain cancer specialist.
Adam Wolfers 14:09
So he basically, he can look at a scan and be like, Oh, I know that like there’s inflammation there and so I basically saw my neurologist and he was like, Oh, I can’t tell you exactly whether you can have another stroke or not, and I was just kind of wanted answers as we all do.
Adam Wolfers 14:29
And I got my friend in my cycling group I’ve just written this down here he’s basically a neuro anyway, in the neuro field, and he basically said, he said to me like, I don’t think the neurologist can read your scan properly, because it’s really difficult for a public hospital intern to read that sort of scan.
Bill Gasiamis 15:21
Okay, so I understand. So basically where you’re at is you’re in a little bit of a sort of zone where you’re not exactly certain what’s happened, how it’s happened, and whether it’s possible for it to happen again.
Bill Gasiamis 15:38
Seems to be like a inconclusive stage of the diagnosis, and they’re not really sure what caused it. So you’re still in that process, though of being in touch with doctors regularly and seeing people regularly about this.?
Bill Gasiamis 15:54
Ah, no, they just discharged me from the hospital. They’re kind of like you’re on your own now.
Bill Gasiamis 15:56
How does that feel?
Adam Wolfers 16:07
I mean, it’s okay. I was sort of, you know, you gotta get on with your life. But at the same time, I kinda like always at the back of my head, I’m like, am I gonna have another stroke? That’s the scariest thing. So it’s, it’s pretty scary.
Bill Gasiamis 16:29
What I would encourage you to do, not that you come along to this podcast specifically to get advice from me. But what I would encourage you to do is find another neurologist and get to the bottom of this, use your friend your cycling mate.
Bill Gasiamis 16:45
To get you into or whether it’s he or somebody else to get you into the office of somebody that’s going to be able to take you through the whole thing and give you some sort of a path forward. So you know, what’s going to happen, and how they’re going to monitor your condition. Is there somebody monitoring your condition in any way?
Adam Wolfers 17:06
So I have a well rounded GP, that she sort of looks at the whole gut biome, and she’s keeping an eye on all my bloods and I haven’t really got anyone for the stroke side of things.
Bill Gasiamis 17:26
Definitely do that men. And it sounds like, in order, are you writing things down because you’re trying to remember them? And memory is a bit of an issue? Is that why you’ve had things written down?
Adam Wolfers 17:37
Yeah.
Bill Gasiamis 17:38
So have you spoken to anyone about your deficits and the things that you’re experienced as a result of the stroke? That has made you feel a little differently than you were before?
Adam Wolfers 17:50
Yeah, I can kind of tell that it’s a little bit of a delay. They diagnosed me with like, mild aphasia. And I’ve always got like that, I sort of feel that delay, I can’t like, straightaway answer the questions really quickly.
Adam Wolfers 18:11
I have to think about it. And then it’s sort of on-the-spot thinking, That’s the hardest thing for me. And that’s, you know, it’s gotten better. But it’s, you know, it’s one of those things, it’s going to take time.
Bill Gasiamis 18:23
Yeah, it will. And also, rehab Adam, have you had any one take you through speech therapy, or trying to determine where your deficits are, and how to improve them?
Adam Wolfers 18:40
Yeah, so I had intensive rehab for the first three months. And so once that was done, I just sort of gotten back to work and just chatting to people that sort of my way of recovery.
Getting back to work too soon
Bill Gasiamis 18:58
Yeah. And how much work have you got back to because if you were a chef, I imagine you’re doing crazy hours. So what’s it like now when you’re back at work, how many hours you’re doing?
Adam Wolfers 19:10
So at the time was kind of like I needed to get back to work straightaway. And, you know, I think I went back too soon, looking back on it. But I really want to get back into the industry, but I feel like in restaurants that’s not really where I can thrive.
Adam Wolfers 19:41
I’m sort of looking at like consultancy, and, you know, basically writing menus for other restaurants and you know, I’m just sort of hanging in there. Finding ways to make money.
Bill Gasiamis 20:01
Has it been one of the hardest things being unable to work.
Adam Wolfers 20:09
Yeah.
Bill Gasiamis 20:11
But you’re at home with the kids and your wife. And you’ve got a little bit more time to do that. Is that special? How does that feel? Being able to actually spend some time with the young kids and your wife?
Adam Wolfers 20:23
Yeah, it’s been great. It’s been amazing. But I’m kind of like, at a point in my life where I’m like, in a crossroads, so it’s kind of like stroke recovery, midlife crisis at the same time.
Bill Gasiamis 20:39
Yeah, stroke tends to do that to you man, how old are you?
Adam Wolfers 20:43
I’m 39.
Bill Gasiamis 20:45
That’s a perfect time for a midlife crisis. Nevermind and 20 years of solid work in an industry. I get it how you feel like the whole industry, the whole thing you’ve done is like a really big part of your identity.
Intro 21:01
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like, how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse.
Intro 21:19
Doctors will explain things. But obviously, you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you.
Intro 21:42
It’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition. And they’ll help you take a more active role in your recovery. Head to the website now, recoveryafterstroke.com and download the guide. It’s free.
The world doesn’t stop when you have a strokeBill Gasiamis 22:05
Are you having a bit of a identity crisis where you don’t know exactly where you fit into the world at the moment?
Adam Wolfers 22:11
Yeah. Because everyone just kind of gets on with their own lives. I’ve noticed, I guess it’s as I sort of slow down and do nothing. I’m kind of like, ah, everyone’s just getting on with their lives. And it’s sort of like, yeah, it’s a bit of a funny one. Not fun, but pretty scary.
Bill Gasiamis 22:34
Yeah, everyone gets on with their lives, because life doesn’t stop around you after a stroke happens. That’s the weird thing. Like I went through it for three years before I had brain surgery, and then was still on the mend for another one or two years after that properly.
Bill Gasiamis 22:47
And my whole situation started in 2012. And then I didn’t get back to work until 2019. Now, I was working, but not in an industry that I wanted to work in not doing the kind of work I wanted to do, I was doing just the basic job in an office so that I could actually have a job to go to.
Bill Gasiamis 22:54
And I wasn’t very good at it. But I worked with a mate of mine who was my general manager who really turned a blind eye and protected me for about three years. Even though I was participating at work, and I was trying to do my best I wasn’t up to the task at all.
Bill Gasiamis 23:29
So yeah, there’s a massive identity crisis when I felt like I was in a bit of a limbo and trying to work out where to from here and try to find things to occupy my time with. And what I found was doing things that I enjoyed that were hobbies, fill the gap a little bit, because it was able to bring me a bit of joy.
Bill Gasiamis 23:53
And then from there, as I did that, it kind of filled my filled my bucket a little bit, and then kind of made everything else that was happening around me. Not so bad, even though it was tough time. But my wife had to go back to work full time, go back to work as per normal because she had the bringing the majority of the money at that time.
Bill Gasiamis 24:13
My kids went back to their life as per normal because they were teenagers. So they didn’t really give a shit about anybody. Ever Fair enough. And then everyone else goes back to their normal life because normal life continues. The bills need to be paid, you know, work deadlines, or school or that kind of stuff. It all has to happen.
Bill Gasiamis 24:34
So they do that. And they do that not knowing what you’re going through because they can’t really understand what’s happening on the inside of you. After a stroke like they’ve they can’t actually get it because they’ve never been there.
Bill Gasiamis 24:48
You never want them to get it. And then you’re the person who’s stuck there and you’re you have to take responsibility while you’re recovering from stroke and all the other stuff you’ve been through. Gotta retake take responsibility for redirecting your life in a way that’s going to move you forward, that’s going to make you feel good about it.
Bill Gasiamis 25:10
And this type of resting is really about actually resting and getting better and recovering. Because stroke recovery doesn’t take three months, sometimes it doesn’t take six months, sometimes it doesn’t take six years, sometimes it takes longer. And I feel like I’m still recovering. Even though I’m back to, quote unquote, normal life.
Bill Gasiamis 25:35
I still feel like I’m recovering every day. Nothing’s really it’s never out of my mind. And, at the beginning, it was maybe in my mind in a way that was stressful and that, but now it’s in my mind of like, I’ve got to take care of myself more than anything else. And I’ve got to pay attention to my body. And if it tells me to rest and sleep, I gotta go and rest and sleep.
Bill Gasiamis 26:01
And if it’s telling me I’ve taken on too much this week, I’ve got to take on less next week. And remember the lesson and try not to put myself in a situation where things aren’t. All right, where I put myself back in the state, I was in before stroke, you know, that state where you’re doing too much, and you’re crazy.
Bill Gasiamis 26:22
And lots of hours and you’re over delivering for everybody except yourself. That’s, very normal, what you’re going through, although it sounds like it’s uncomfortable for you.
Adam Wolfers 26:40
Just gotta get used to it.
Bill Gasiamis 26:47
So what’s the hardest thing for you to go through to experience in this time? Is it just is it actually the stroke? Or is it the shift in your identity? How do you kind of define what the hardest part is for you?
Adam Wolfers 27:06
I think it’s at the point where, at the moment, I’m not working some kind of finding ways to make because my wife, she doesn’t really want to work full time, which is the hardest thing. And at the time, I was like, relying on my pay is the full income for the family.
Adam Wolfers 27:35
And, you know, it’s just, that’s the scariest thing is like, what am I going to do? I’m just kind of just doing little gig after gig just to tie it over. We’re not looking to save money, I’m not too sure if it’s gonna get better. That’s the whole uncertainty.
Bill Gasiamis 28:07
Yeah. It does. And it probably will. But what you’re talking about kind of just breaking even at the moment. Yeah, yeah. Which is something that we did for a long time as well. Yeah. We had to break even for about, you know, five, six years. And my wife was working my main breadwinner, but again, we’re only working three days a week.
Bill Gasiamis 28:36
And I was trying to squeeze in some work here or there, whatever I could do to just cover my my outgoings, but it was really hard. And that’s why I went and got just a really crappy full time office job where I didn’t really care about it, but I filled the role and made some money and felt like I had somewhere to go every day.
Bill Gasiamis 28:58
But, at the beginning, for about a year and a half, I had a lot of time to myself a lot of downtime. Where there wasn’t much to do anywhere other than doctor’s appointments. Are you okay with being with yourself? I was quite okay, being at home alone with my own self, but are you alright? Hanging out with yourself?
Adam Wolfers 29:22
Yeah, I can’t get like I’m a bit more of a creative mind. So I always look for the next best thing. I can’t like sit still. That’s my personality. So that’s been really hard for me because I’ve you know, like I can rest but at the same time, I can’t rest because my mind is ticking over what I’m going to do next.
Bill Gasiamis 29:51
And does that mean you start a lot of things but don’t see them through or just jump on to the next shining thing that comes along? Or do you normally start a project and see it through and get it to the end and then start another?
Adam Wolfers 30:07
Yeah, because all the places I’ve worked I’ve worked for like five years, five years, five years, five years. Six months here, six months there like, yeah, it’s just, you know, what it’s like, I just can’t really explain what’s going on in my head.
Adam Wolfers being on a cooking show with Adam Liaw
Bill Gasiamis 30:30
But you managed to get on TV, and do this cooking show with Adam Liaw. So how does that come about?
Adam Wolfers 30:41
So basically, that happened about five months after my accident. So at that time, they contacted me via the restaurant, they were like, Ah, you want to come on the Adam Liaw show? And I was like, oh, yeah, okay, I can do that. And at the time, I kind of like, you need to do X amount of recipes, and you know, for a normal person, it was very stressful.
Adam Wolfers 31:13
But for stroke, recently, stroke patient, it was like, so, like, hectic for me, like, all the lights and the cameras in your face. And they basically were like, Okay, this take hear you, like, you need to do this, this, this, this and my memory, at the time I couldn’t even remember, you know, having my phone next to me, for the five seconds before.
Adam Wolfers 31:41
And I was like, oh, and I was just getting really flustered. And they kind of were like, they were really nice. But you know, they didn’t understand what’s going on. Yeah, but you know, it’s, it’s, it’s pretty hectic, that kind of thing. Because they’re, you know, you have like, you need to write out your recipes, you have other recipes ready, and they have all the food laid out for you.
Adam Wolfers 32:11
And then I sort of said to them you need to have you know, this food all prepped for me. So I can basically plate it up and send it like plate it up for the cameras like it was so stressful. I can’t even explain how hectic it was.
Bill Gasiamis 32:35
So how long was the filming for?
Adam Wolfers 32:38
Filming was like, eight hours.
Bill Gasiamis 32:42
And it was like a 30 minute episode, right?
Adam Wolfers 32:45
30 minute episode. So there were three episodes in the day. So they did they have two more episodes after that ones they had like a chili garlic eggplant and a 15 minute meal. So there’s another two episodes to come on their TV. So I did three, four episodes in one day, which took from you know, five in the morning through till 5pm that day.
Bill Gasiamis 33:16
And of course, that’s not normal for a normal human being that’s hard to do for anybody. Right. And when you’ve had a stroke, it’s like, even harder.
Adam Wolfers 33:24
Yeah, that’s it. Because they were like, Oh, we have a quiet room you can go in and they’re quiet room was like really bright lights. And like, it’s not quiet at all. It was like the complete opposite of quiet. And I like literally had to take my pair of sunnies and my, those like air pods and put them in and I was like, you know, putting on easy listening music, and I just was like, you know, I had a break for about half an hour. And I was just like, okay, I’m good to go. And then it was like, it’s yeah, it was so hard.
Bill Gasiamis 34:05
Did they know that you had a stroke?
Adam Wolfers 34:07
Yeah.
Bill Gasiamis 34:08
Okay, so they knew that. But you don’t look like somebody who had a stroke. Technically, right. You look normal. Right. So that would have been hard for them to comprehend. And kind of work out like this guy looks fine.
Bill Gasiamis 34:26
I don’t know what he’s talking about, you know, he just seems really difficult to work with because he wants all this stuff that other people don’t want. And that would have been difficult in a 12 hour day for them. They would have been hard to sort of deal with somebody who’s different in any way.
Adam Wolfers 34:41
Yeah. That’s it.
Bill Gasiamis 34:45
And then you get through that and how were you the next day? How do you feel after you’ve done that? Are you wiped out?
Adam Wolfers 34:54
I live in Brisbane. So from Brisbane, you have to fly down to Sydney. That alone I needed like two days to recover from a flight. Say you fly down. So that was my first flight. Since that accident I was like, oh my god, this is so intense like, it’s intense for anyone but you know, you get it.
Adam Wolfers 35:23
And basically, I went down on my own, on the plane on my own. And I got like I got picked up from because my parents live in Sydney. So they picked me up from the airport and just, you know, took me to the hotel room. And I just stayed in the hotel room for about, you know, I stayed in there for that whole a whole day. And then the next day, I was there filming.
Adam Wolfers 35:54
So I literally flew down on Friday, on Thursday, Friday, Thursday morning, got there Thursday, after an hour, Thursday 10 o’clock, and then basically went to the hotel room stayed in the hotel room and just slept for eight hours. And then I basically wrote down all the all my answers, because I asked them, you know what questions you’re going to ask I’ll practice that all.
Adam Wolfers 36:27
And so I was reading all the lines before I’m going on, I’m like, oh, man, this is so hard. And yeah, so, you know, I just basically memorize all the lines. And then when I got to the filming of it. They were kinda like they changed the way they asked the questions. And so like, he saw what it was like sitting on a stool, talking to Adam Liaw and then another who’s like, a personality.
Adam Wolfers 37:03
And they all sat there, like it was really awkward, was kinda like, sitting up straight like this. And I was really concentrating on it was daunting on the fact of them asking me a question. And I was like, okay, he’s gonna ask me this question.
Adam Wolfers 37:23
Okay, and then I’ll memorize it, and then just change the way I asked the question slightly, and then I was just frozen. I was like, Oh, my God. Okay. Just say, I just say, Where am I? Okay, just say that word. And then, you know, it was so hard.
Bill Gasiamis 37:43
So did you watch the episodes back? Did you have a look and see? You didn’t. That’s interesting, because I watched the episode contacted you straightaway after I saw it. And, of course, the person who told me to watch the episode told me that you’d had a stroke your stroke survivor.
Bill Gasiamis 38:08
And of course, then I’m picking up all of the challenges that you’re going through, and I can tell that you’re going through a lot of challenges trying to get the words out. And you mentioned a bit earlier about the Aphasia, the little bit of aphasia that you have like getting started in answering your question.
Bill Gasiamis 38:26
And I think they did a really terrible job in presenting you in the editing, presenting you as good as possible. Not that they should have edited that. I’m not saying that at all. I’m just joking. But I could tell that you’re definitely still in the phase of stroke, where your recovery is still coming along.
Adam Wolfers pushing through the challengesBill Gasiamis 38:47
And you’ve got a little bit of recovery to do. Are you happy that you went along? And did that anyway, and sort of pushed through all those challenges? Or do you feel like it would have been better to just sit it out?
Adam Wolfers 39:02
I think at the time, I was like, Oh, this opportunities are gonna come later. That was my whole thought process in my head. And, you know, I don’t regret doing it. But I think at the time I went, I feel like if I left it another six months, it would make it a lot easier for me. Yeah, I think you know, you can say you should have waited, either like or if you waited, the opportunity may not have been there. That’s, the biggest thing.
Bill Gasiamis 39:44
Okay. I tend to agree with you just go for it and do whatever you can to get through it. I remember, early on in my stroke recovery, I got approached by the Stroke Foundation to do some TV as well. Some media, they came to our house and they filmed for about 12 have hours.
Bill Gasiamis 40:01
And there was about 50 people in my house I have a little house and they were everywhere. And we were doing some ads for Bupa, the insurer. And, the Stroke Foundation, they were working together and it was chaos, absolutely chaos.
Bill Gasiamis 40:19
And I remember being in my own house and not eating, and not drinking anything, just getting sucked into the whole production and waiting. Like I had food in my fridge and everything but waiting for catering to bring us the food and all that type of thing. It was so weird.
Bill Gasiamis 40:41
And we managed to get it done and got through it. And it was hard. But it was really rewarding. I felt really good about having been involved in like you I thought this opportunity won’t come again. And it was just what the hell just go for it and do it. And then do the recovery later and deal with it. Was it helpful having your mum and dad in Sydney with you? Did you catch up with them after the show again? Or did you just fly straight home?
Adam Wolfers 41:11
No. So I caught up with mom and dad while I was down there. It was pretty interesting.
Bill Gasiamis 41:24
It’s an interesting journey. Was that the first time you had the opportunity to be on TV?
Adam Wolfers 41:29
Yeah.
Bill Gasiamis 41:29
I get Yeah, you got to do it. And you got to push through it. And even though it’s hard, and you suffer while you’re there, if you can get through it, like you said, with shades, and you know, with ear pods, just trying to keep the noises out and all that and somehow push through for a day or so.
Bill Gasiamis 41:49
And it’s not going to impact you your health in a negative way. I think there’s a lot of positives that come out of it. So it’s kind of like worth paying that price a little bit to get this experience. Yeah. Yeah, sure. So I think I know that I think I’ve got a new career for you. If, if you opt for a career advice, YouTube channel, man where you’re cooking meals at home.
Bill Gasiamis 42:17
Just do that teach people how to cook. But bacon and eggs or whatever they need to eat to get through, you know, stroke recovery, that’s easy to make, you know, you can be the stroke recovery chef guy. How’s that for a channel name?
Adam Wolfers 42:37
Yeah that’s a good channel.
Bill Gasiamis 42:37
I say that because there’s a lot of cool creative people on Instagram. One of them is a lady who I follow who has a page called Georgia bakes for brains. And she’s had a stroke. She’s somebody who had a craniotomy, so part of a skull removed. And then I imagined how to put back she lives in Melbourne, and her insta is, Georgia Bakes for Brains.
Bill Gasiamis 43:07
And then she’s just got all of the creations that she’s ever put together. And she must make cakes for people I imagine she makes cakes for birthdays, that type of thing. She’s super creative, and she just takes you on a very quick little journey of decorating a cake.
Bill Gasiamis 43:31
And I think a lot of people that can tend to be kind of therapeutic sort of being somebody who has got the skills that you’ve got. That might be therapeutic and help you sort of feel like your identity is still alive and well.
Adam Wolfers 43:56
Yeah, that’s a great idea. I just yeah, I’m kind of at the moment. I’m kind of I don’t know what to do.
Bill Gasiamis 44:04
Yeah. I hear you man, I know. I’m not expecting you to be a YouTube chef tomorrow. Well, I thought I’d just chuck it out there. Maybe it sits if it doesn’t, doesn’t it. It’s alright. So what’s it like dealing with the kids, man? Are they little?
Adam Wolfers 44:20
Yeah, so I have a three year old and a six year old. So that was pretty tough. Because, you know, the, for the first six months, I was like, I didn’t quite understand the whole over sensory overload sort of thing. And so they’re screaming and, you know, carrying out they don’t, you know, the little they don’t understand that, but daddy looks normal.
Adam Wolfers 44:50
And at the time, you know, I wanted to be with them. But, like, I couldn’t because I literally did noise and screaming and the carrying on I couldn’t handle it. Yeah. Yeah, I got I got better at it. I got those air pods and just put on nice calming music in the morning. But my son is on and cooked breakfast and that that got through it. Wow. Yeah, so that was a way of getting through it. But you know it was it was. It’s really good now. Yeah. it’s much better now.
Bill Gasiamis 45:28
Yeah. Kids don’t really care what’s happening to you. They’re just gonna be themselves, right.
Adam Wolfers 45:33
Yeah, that’s it.
Bill Gasiamis 45:34
And it’s kind of good. But at the same time, it’s kind of really hard. And little kids require a lot of energy. And they just expect you to turn up and be there for them and do everything you’ve always done. They don’t really mind. So cooking in the morning with Sunnies and earpods on yeah?
Adam Wolfers 45:55
Yeah.
Bill Gasiamis 45:56
Is the morning, the hardest part of the day for you? And you live in sunny Queensland. So it’s bright all the time. Is it the hardest part of the day for you? Or is the other parts of the day where it feels a bit harder.
The hardest part of the day for Adam WolfersAdam Wolfers 46:10
I think the morning is probably the easiest part of the day. Because it’s hard to explain that like in Queensland, everyone’s up at 5am. And so everyone’s doing things from 5am in the morning. And so that’s sort of, that’s sort of easier for me, because I have two young kids, and they’re up at five o’clock already. So that’s been my morning thing. And, but I find like, as I get to about two or three o’clock in the afternoon, I then start to get really lethargic and just need to lie down for half an hour, and then I’m going to go.
Bill Gasiamis 46:51
Recharge, two or three in the afternoon. So how does the lethargy come about? Do you notice that you’re talking suffers? Do you notice that other things sort of get a little bit strokey? Do you have like, the symptoms get worse?
Adam Wolfers 47:09
like because I like my right side got affected. And so I find that, like when I my way, my right side of my body like basically becomes a lot weaker, and I can’t use it as well. And that’s sort of the first point of part of my body that is, um, you know, noticeable.
Bill Gasiamis 47:33
Yeah. And it’s telling you, you’re tired. And you need a rest. Yeah. Bit of a cat nap. And then you’re up. Yeah. And you’re sleeping. All right, you’re getting through the night with a decent amount of sleep waking up feeling like you’ve had a good amount of sleep.
Adam Wolfers 47:50
Yeah, I don’t know. Yeah. So for a while, I was like, literally teaching myself how to sleep. And then. So that was, that was the hardest thing is like, teaching yourself how to sleep again. And that was, you know, it was so easy for me to sleep. Because I basically did a lot during the day, go to bed and wake up the next day, and so I had to reteach myself how to sleep. So, you know, I’m using meditation and, you know, using those air pods just before I go to sleep, deep breathing, I just had to reteach myself how to do all that stuff.
Bill Gasiamis 48:33
What sort of hours were you keeping? As a chef? Were you up at the crack of dawn? Or were you going home really late at night? Or both?
Adam Wolfers 48:39
So I was so to mention before I was a cyclist, so I was up at about 4am And then I cycled you know, to three hours in the morning, then I’d come home, make breakfast for the kids. And then I just you know, relax for about an hour go into work at 10 o’clock. And so 10 o’clock till midnight. Well, and then I’d only cycle once every two days. But I think that was an ongoing thing to basically.
Bill Gasiamis 49:18
So up at four. And then you finish at midnight. And then you go home. How long does it take you to get home and then fall asleep? What you’re gonna see back in 15 minutes and then you’re having a shower winding down. And you’re getting three hours a night of sleep some nights sometimes. It’s still feeling 100% good to go the next morning.
Adam Wolfers 49:49
That’s probably too much.
Bill Gasiamis 49:52
That’s too much for anybody, of course. But what’s interesting is that you got to do it for that long for such a long time was that something that you were doing for many, many years.
Adam Wolfers 50:02
I was doing that for about three years.
Bill Gasiamis 50:09
Did you feel that it was good for you?
Adam Wolfers 50:12
Yeah. Amazing. That was my happy place my cycling it’s my outlet.
Bill Gasiamis 50:21
And you just somehow got taken away.
Adam Wolfers 50:23
That was like, I felt really lost.
Bill Gasiamis 50:29
Have you been able to cycle since? Yep. I can see you back on the bike. Yeah. So
Adam Wolfers 50:34
literally, six weeks at a hospital, I have like a one of those Wahoo trainers I was on the train are like six weeks out of hospital. I could only do like, you know, 10 minutes, and then I’ll do 20 minutes, and I’ll do 30 minutes. And I sort of, like incrementally do that over the course of you know, like, after about two weeks out of hospital. I was riding 40 Ks.
Bill Gasiamis 51:07
That’s pretty good man, you don’t muck around.
Adam Wolfers 51:09
Yeah, I mean, it’s kind of like, I want to get back to what I was before. But, you know, I’ve kind of realized that I can’t.
Getting back on the bike after a stroke
Bill Gasiamis 51:20
You’ve let it go a little? Right. So now, how many kilometers are you doing on 40 kilometres is 26 mile for anyone wondering somewhere there. So how many kilometers are you doing now?
Adam Wolfers 51:36
So I’m doing I can only do 40k. So I can only do 40 kilometers at a time.
Bill Gasiamis 51:42
Only?
Adam Wolfers 51:45
But I can only do that once or twice a week now. Yeah, one to two times a week. But after a ride. Like I’m basically done for half the day.
Bill Gasiamis 51:56
Wiped out?
Adam Wolfers 51:57
Yeah, wiped out.
Bill Gasiamis 51:58
I remember that. Because I used to, I didn’t have those issues that you had about cycling, I don’t need to do 1000 kilometers a week. So I just used to ride just as a different way to get to a destination without walking or driving. Right? That was all and just really leisurely. I’ve even got a little speaker that I cable tie to the back of my seat underneath my seat.
Bill Gasiamis 52:27
And I just put the iTunes or Spotify on and I just blare out dance music as I’m riding along the bike path, right, it’s so cool. So that’s why I did it. And then when I couldn’t get back on the bike again, I was really devastated as well.
Bill Gasiamis 52:45
Because when I did get on the bike, my left side got tired, far quicker than my right side and I fatigue immediately. And then I couldn’t feel my arm and leg and my leg would fall off the pedal. And then putting my leg down my left leg down to balance, I wouldn’t feel my leg.
Bill Gasiamis 53:00
So I’d fall off the bike. It was just a nightmare. So I stopped riding. And then I found an electric bike. So battery operated, helps you with the pedaling that made a massive difference to how much fatigue my leg and my arm felt.
Bill Gasiamis 53:16
And I was able to ride for longer. So now I might do 10 kilometers or 20 kilometers in a ride. That could take hours, it’s not going to I don’t need I don’t need to do it fast. I just need to get it down. Right. So that was what was really cool about it.
Bill Gasiamis 53:32
And then I got to the point of once I had managed to find the electric bike and get on the I got to the point where that fatigue of I did a 20 Kilometer ride in the morning. And now I’m wiped out for the rest of the day that started to shrink that I got I was later then I wasn’t wiped out for the whole day, I was wiped out for three quarters of the day and then for half the day and then for a little bit of time and then for half an hour or an hour.
Bill Gasiamis 54:01
So right now if I go for a ride, then I just take a rest for an hour or two, and a really, really good after it. But that that’s what gets better. And I feel the more you exercise. It is really beneficial to you. So it’s definitely worth doing.
Bill Gasiamis 54:17
But over exercising is something that you’ve got to be careful about. And I’m glad that you’re at that stage where you’ve realized that I still enjoy my ride but only twice a week and then all I’ll rest. Are you still waking up at four in the morning to do that ride?
Adam Wolfers 54:34
Oh, no, no, like, I’ll go about 5am it’s just it’s hard to explain but like in Queensland you kind of go earlier because it gets really hot by about seven o’clock, right? by 7am and start like it gets like the humidity is very different up here.
Adam Wolfers 54:56
Although everyone is out and about all the cyclists around at five in the morning 5:30. I’m really grateful that I can ride my bike. That’s, that’s the most important thing. Yeah, I’m not doing it for a job. I’m doing it as a, like, enjoyment now.
Bill Gasiamis 55:23
Yeah. Have you so now it’s now it’s about enjoyment and supporting your recovery and it’s about healthy for healthy reasons. It’s probably taking you into the same quiet space, he’s still going into that same quiet space helping you out with your mental well being I imagine.
Adam Wolfers 55:41
Yeah, does definitely.
Bill Gasiamis 55:44
You’re the kind of guy to seek out help. When you’re going through a tough time or struggling before stroke. Were you the type of guy did you need guidance and support from other people were just able to push through
Adam Wolfers 55:56
knives? Is that a little push there? Yeah.
Bill Gasiamis 56:00
So changed a little bit now. Have you been able to?
Adam Wolfers 56:03
Um, I think it’s pretty much the same. Like but, you know? It’s It’s just different. It’s just like, I don’t, I don’t. Yeah. Kinda like, I feel that I’m different. But I don’t want to be different. That’s sort of where I’m at.
Bill Gasiamis 56:33
So part of us going let’s hold on to the old atom. Yeah. And the other part is going there’s definitely a new atom. And is it about transitioning and trying to embrace the new atom at some stage and trying to feel comfortable with that?
Adam Wolfers 56:49
Yeah.
Bill Gasiamis 56:50
Stroke tends to do that really rapidly. Aging does that a little bit slower, it gives you a little bit more time to go. Shoot, I noticed that ache ache in my back. So I’m gonna take it easy, or your toe hurts, or I’m not as fit as I used to be. You have a gradual kind of understanding of how you’re changing and how you need to adapt to go go through life.
Bill Gasiamis 57:16
But stroke just does it overnight. Big difference? Yeah. That’s the hardest part. For people to adjust to a lot of people can’t adjust to that change. That happens so rapidly, because they’re caught up in it three minutes ago, I was all these other things. I was a chef who worked 14 hours a day. I was a dad, I was a cyclist, I did all these things.
Bill Gasiamis 57:43
And now what overnight? I’m not all those things anymore. What? What am I what do I do? How do I get along? If anyone finds himself in that situation, then what I do is try encourage them to just be in that space. So in the space of your lifetime, you’ve gone through about 40 years of life.
Bill Gasiamis 58:03
And then in in the space of 40 years, this time, this one year, even if it’s two years of time where you’re not sure or certain about things, it’s not a long amount of time. While you’re in it, it feels long. The reality is it’s not long, it’s a very short amount of time, and it’s gonna go really fast. And you’ll get through it.
Bill Gasiamis 58:28
And it’s you’ve got to find a unique way that supports your thinking and supports the way you’d like to go about life to get through it in your own unique way. That’s that’s the challenging part. It’s like how do you adapt and change? It’s sometimes reaching out to other people can help you with that. Counseling coaching. Mentor, anyone who understand your condition and what you’ve been through, could sort of help that and make it make the transition a little easier, perhaps or perhaps not.
Adam Wolfers 59:05
No, I’m agreeing with you.
Bill Gasiamis 59:09
It doesn’t matter. How does talking for a long time impact you going through a conversation like this? Does that make you tired, fatigued?
Adam Wolfers 59:21
It gets me like I can talk for about you know, 30, 40 minutes and then I start to get really lethargic like I am right now.
Bill Gasiamis 59:31
Yeah I noticed. That’s why I asked.
Adam Wolfers 59:37
It’s gotten better because for the first you know, two, three months like or six months, seven months, I like literally had a conversation for 10 minutes and I’ll be like, I’m done. So it’s gotten much better. I couldn’t have done this like three months ago.
Bill Gasiamis 59:55
Yeah, you know what man? On that note though? I’m good. gonna let you get back to the rest of your day. I really appreciate you saying yes. And coming on to the podcast, when I reached out. I love what you’re doing as far as still trying to get through this and adjusting and finding new ways to do yourself. And if you ever decide to do the food YouTube channel, I’ll fly to Brisbane. And I can be your guest on your show, and you can show me how to prepare meal.
Adam Wolfers 1:00:28
Cool. All right. Thank you so much for having me on the show.
Bill Gasiamis 1:00:32
My pleasure, man. Thank you for being here. Thanks for joining us on today’s episode to learn more about my guests, including links to their social media and other pages. And to download a full transcript of the entire interview.
Bill Gasiamis 1:00:45
Please go to recoveryafterstroke.com/episodes. If you would like to try the course five foods to avoid after stroke, go to recoveryafterstroke.com/courses and get on board now. If you would like to support this podcast, the best way to do it is leave the show a five star review and a few words about what it means to you.
Bill Gasiamis 1:01:07
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Brooke Lang is “the real deal” when it comes to speech therapy. Join us for some tips that may help you recover your speech after stroke.
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Highlights:
00:55 Introduction – Brook Lang Speech Pathologist
01:54 What got Brooke Lang into speech pathology
06:10 What’s the idea behind intense rehabilitation?
10:08 How soon should you begin the therapy?
17:25 Stuck in a phonological loop
23:08 The three-pronged approach to stroke recovery
30:08 Education and involvement of family members
45:09 The importance of finding a new identity
58:43 The importance of asking yourself “should” vs “want”
1:04:32 The importance of taking control of your recovery
Transcript:
Bill Gasiamis 00:00
I always loved referring back to the physicist Stephen Hawking, you know, the guy couldn’t speak, talk, walk, couldn’t do anything. And he was still at the top of his game.
Brooke Lang 00:12
Yeah, exactly.
Bill Gasiamis 00:15
Everyone else learned how to be around him. They all adjusted themselves, they all stepped up, and they all grew. And they all found new ways to interact with somebody who most people would have written off. Right. And the only person who didn’t write himself off was him.
Intro 00:42
This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.
Introduction – Brook Lang Speech Pathologist
Bill Gasiamis 00:55
Hello, and welcome to episode 247 of the recovery after stroke podcast. My guest today is Brooke Lang, a speech language pathologist and the founder of Integrative Reconnective Aphasia Therapy.
Bill Gasiamis 01:08
She has been described by one of her patients as the real deal. And today, we hope to bring you a few things to consider as you go about recovering your speech after stroke. Brooke Lang, welcome to the podcast.
Brooke Lang 01:22
Thank you.
Bill Gasiamis 01:23
Thank you for being here. I reached out because one of my coaching clients told me that you are the real deal when it comes to supporting people with regards to recovery from aphasia.
Brooke Lang 01:37
I mean, I feel lucky to do what I do. It’s such a crazy thing. And it’s, you know, quite common.
Becoming Brook Lang: Speech PathologistBill Gasiamis 01:54
How did you get involved in aphasia help? How does somebody get motivated to work in that space? Usually, I’ve found that a lot of people who work in the space of supporting other stroke survivors or people who have gone through a rough time have got somebody that they know or history of someone that was struggling with something similar. What’s, what’s your path towards this type of work?
Brooke Lang 02:23
Actually, you know, I decided to be a speech pathologist. Because in high school, there was one of the students who has cerebral palsy. And I remember he was not able to communicate verbally at all.
Brooke Lang 02:43
But he had a device. And I just found it amazing that although you didn’t express themselves verbally, how much he was able to communicate using the device. And that’s kind of just what made me start looking into speech pathology.
Brooke Lang 02:58
It is such a broad field. We do so many different things from working with kids with articulation to working with tracheostomies etc, and then aphasia. I ended up doing my fellowship at the VA here in Pittsburgh, Pennsylvania.
Brooke Lang 03:20
And we had a program where we served veterans who have aphasia, and we would see them intensively. So we would see them for a month. And we would see them for five hours of treatment a day.
Brooke Lang 03:34
And I think that’s really where I just fell in love with it. And discovered that it’s such a challenging area, there’s no black and white. Everything has to be so personalized and individualized. But it’s sort of what I enjoyed about it.
Bill Gasiamis 03:55
The vets would have come to have aphasia in a number of different ways. Is it stuff that’s related to what’s happened on the battlefield? Or is it stuff that’s related to regular life like stroke and those types?
Brooke Lang 04:09
A combination, so some had gunshot wounds, but at most were unrelated I would say and more likely as a result of a stroke to the left hemisphere that resulted in them having aphasia.
Bill Gasiamis 04:26
Yep. So when you get approached by somebody to help them with a speech issue, how do you determine what their issue is because you hear about aphasia, but there’s a lot of things that are stopping people from speaking. It’s not necessarily the ability to not make the words and say the words it could be something else. So what are some of the other things that cause communication issues?
Brooke Lang 04:54
Well, I mean, when you have aphasia, there’s you know, we think of it as a language disorder, so it’s not just somebody having trouble communicating verbally, they likely also have trouble processing language.
Brooke Lang 05:12
And as well as reading, understanding what they read reading aloud and writing, so all of that sort of language expression, and the processing piece can be impacted. And the thing with aphasia is, everybody’s different.
Brooke Lang 05:27
There is they say that when you’ve seen one person with aphasia, you’ve seen one person with aphasia, and it’s so true. Even if, you know, the area of damage is quite similar, they can still have completely different symptoms and characteristics.
Brooke Lang 05:45
So I mean, you really have to take each individual person, as an individual person, talk about what their challenges are, do the appropriate assessments, you know, we have certain things that we do to kind of dig into what we feel that underlying issue might be, and then do our best to target that impairment and that deficit.
What’s the idea behind intense rehabilitation for Restoring Speech?
Bill Gasiamis 06:10
When I hear five hours of rehabilitation a day, intense rehabilitation a day, I’m tired, just listening to that. I imagine it’s really difficult, somebody with a stroke, who has aphasia as one of the deficits that they’ve acquired is also probably suffering from fatigue.
Bill Gasiamis 06:32
Do you work towards five hours? Or do you just start with five hours? What’s the idea behind doing such an amount of therapy, I remember trying to learn to walk again. We were doing five minutes at the beginning, and then 10 minutes and then 30 minutes.
Bill Gasiamis 06:53
And I was exhausted after every one of those efforts. So how does that intense amount of therapy help people overcome the deficit? And how does it support them to get their speech back?
Brooke Lang 07:12
Yeah, great question. So in that program, the individuals tend to be more in like the chronic phase. So they’re at least a year out from their stroke, not that they’re not still experiencing that neuro fatigue.
Brooke Lang 07:30
But they’ve sort of gotten past that initial time. And is it something that they work up towards? No, it’s what they sign up for. And, you know, we put them through a three hour assessment, and see how they kind of handle that.
Brooke Lang 07:48
And I mean, it’s amazing what people are willing to do, you know, to do their best to recover. I mean, I with my own practice, I do have intensive programs too where people sign up to do three hours a day, five days a week, and even doing it on the computer.
Brooke Lang 08:07
And, again, people surprise me time after time. It is such hard work. It has got to be exhausting, but they power through and, you know, people are willing to do what they can to get their communication back.
Bill Gasiamis 08:22
Is there something about doing a work to exhaustion, so I’m thinking about going into the gym, you always hear about let’s do that last set that last rep. You always hear about moving beyond what’s comfortable, and then going to exhaustion, and then stopping.
Bill Gasiamis 08:43
Does that benefit somebody? Because I would have thought that when you take somebody to exhaustion, especially in the fourth hour, and then the fifth the ability to retain information and to hold on to new learning severely declines? Or is that just not true?
Brooke Lang 09:04
Yeah, I don’t think it’s the same as comparing it to, you know, your gym, exercise workout, I think you’re right. And there’s still a lot of research, excuse me that they’re doing to try and figure out what is that comfort spot where it’s a good amount of intensive therapy.
Brooke Lang 09:24
Like they found that intensive therapy can be really valuable, but how much and for how long is really kind of the big question that they’re doing a lot of studies looking into and examining that but you know, I tell my patients, it’s just as important to rest as it is to work on their recovery and equally important so I encourage breaks and naps because I think that’s huge. And it’s what’s necessary in order for their brains to make the necessary changes.
How soon should you begin the therapy?Bill Gasiamis 10:08
When would you rather see somebody? Would you rather see them at the very early stages of their stroke recovery? Or is it okay to see them after some time has elapsed? I imagine that if it was me, I’d want to get to you immediately.
Bill Gasiamis 10:22
But some people don’t have the opportunity to. And then they may also feel like, it’s too much time has passed, and now maybe it’s too late for me to get my communication back.
Brooke Lang 10:37
I have a lot to say about that, actually. So I think it depends. Yes, typically, I think I’d like to see somebody right away, because what can happen. So in that first, and neurologists will tell their patients, you know, that first six months to a year is crucial.
Brooke Lang 11:00
And it is, but also, people need to know that after that first year, they can absolutely still make a lot of gains. So just because that one year mark is up, does not mean that that’s it. But a lot of times, if I see somebody earlier on, they might still be having medical challenges and not be as stable as they should be in order to fully benefit from the treatment.
Brooke Lang 11:28
Like if they’re having seizures, or again, if they’re, you know, still getting a lot of tests, and they’re extra tired. And again, that fatigue piece is another thing to take into consideration.
Brooke Lang 11:40
But sometimes when I see individuals later, which is sort of when I do end up seeing probably most of them, they’re usually at least six months out. If not, I get people who are eight years out and want to pursue treatment.
Brooke Lang 11:58
But sometimes they’ve developed some maladaptive behaviors over that time, that can be tough to break. But that need to be sort of broken before we can move forward and really, you know, work on the language recovery piece.
Bill Gasiamis 12:17
When I hear maladaptive behaviors, what I hear is that they might have beliefs, thoughts or ideas about what’s possible for them, and why they can’t communicate. And that’s getting in the way of the communication more than their deficit or more than the injury has caused.
Bill Gasiamis 12:36
So I tend to, it’s not the right word, but I tend to relate to it as negative Neuroplasticity where they’ve, instead of how to use Neuroplasticity for a positive purpose and getting a good outcome.
Bill Gasiamis 12:49
They’ve created neurological pathways. And they’ve applied Neuroplasticity in a negative way, perhaps they didn’t know that they were doing this in a negative way. And then as a result of that they’ve reinforced that inability to communicate. They believe it in every way. They think that it’s potentially them forever. And then that they’re getting in their own way of their ability to communicate.
Brooke Lang 13:27
Yeah, I think that’s definitely a piece of it. And I mean, I have had conversations with some of my patients, telling them that you are the one standing in your own way, at this point, you know, and until you get out of it, you’re not going to be able to move forward.
Brooke Lang 13:44
And of course, that’s easy for me to say I’m not the one going through it. And it is no easy road. It is no easy feat. And aphasia can really disrupt not just the lives of people with aphasia, but everybody around them and everything that it involves.
Brooke Lang 14:03
But I also think, I mean, I think you bring up a really good point about that, almost like the mental, emotional, negative Neuroplasticity end of things, but I think too, they develop just even, like maladaptive behaviors with their speech, like starting a sentence over and over, they almost sound like they’re stuttering, because they won’t finish or complete their thought.
Brooke Lang 14:30
And it’s their way of feeling like if I get that running start, maybe that word will come out, and they start their sentence, and they start their sentence, and they start their sentence over again until they can get that work where I when I work with them, I do not want them going backwards.
Brooke Lang 14:50
Just keep moving forward. And again, just some of that little stuff that can make a big difference early on. But again, if they’re they’ve been doing that for five years. It can be a bother to break that, you know?
Bill Gasiamis 15:04
I hear you. So I hope you don’t mind cussing because I’m just going to cuss in context of.
Brooke Lang 15:09
No I love cussing.
Bill Gasiamis 15:12
It’s not normally a cussing podcast in the context of this particular case. So one of my clients, he’s also one of your clients can only get the word f*** out. And that fascinates me now.
Bill Gasiamis 15:29
Fing f, and f***, and that’s kind of how he goes about expressing his level of frustration, depending on the tone, and the length of it. And the way that he says it, you can kind of get grasp a little bit about how he’s feeling about something.
Bill Gasiamis 15:49
I know this is going to be a difficult question for you to answer. How is it possible for one word, and I’m going to continue this by telling you in a moment, the next part of this story and why I’m asking it, how is it possible with one word to be stuck there? And that’s the only word okay, I know, you might not be able to answer that.
Bill Gasiamis 16:09
Also, my godfather passed away about two or three years ago. And he unfortunately had a tumor in his head and it was inoperable. And when it grew, and all his faculties went away, most of them went away.
Bill Gasiamis 16:25
The only word that he could communicate with was the same word. And he was, you know, is a Greek guy came from Greece in the 1980s to Australia had no language other than that one word, he was just throwing out to my godmother, his wife, f, f, and fing f.
Bill Gasiamis 16:48
It was like, ridiculous that I’ve come across it twice now. And I don’t know, how to even begin that conversation with you. I don’t even know what to say. But I feel like you need to address it, because you’re the speech therapist.
Brooke Lang 17:04
I can address some of it. So and I have a third case, relating to that, that God bless her was a nun. And I kid you not that was the only it’s a heck of a thing, right? Like how awful and so there are other individuals.
Stuck in a phonological loopBrooke Lang 17:25
So that’s a more severe type of aphasia. Now there are what sort of happens, what we believe happens is, it’s almost like they get stuck in a phonological loop. And they can’t get out of it. And it takes a lot to start to get them out of it.
Brooke Lang 17:47
They can be sort of the toughest individuals to treat. But the other piece is, is that any word like swearing tends to be highly emotional. And a lot of times, sometimes the first thing ends up coming out, because the person is frustrated, they’re scared or angry, is sometimes a swear word. And so we’ll have people who come and say, My husband never swore before.
Brooke Lang 18:14
You know, we go to church every Sunday, and now he has a Trucker Mouth. And that can happen because again, it’s like, it’s almost like an automatic thing that comes out, they have no control over.
Brooke Lang 18:29
And I’ve had patients too and what’s interesting, like you said is their intonation for what they’re trying to express is accurate within that F word framework. Right? And so, I mean, I had a patient who all he could say was dooey. So it wasn’t a word. It was just a made up little two syllable chunk.
Brooke Lang 18:55
And he would have full conversation in his dooies, dooey dooey the dooey dooey dooey? And like, again, I knew if he was asking you a question, if he was excited about something all in his dooies.
Brooke Lang 19:08
And so it’s a, just a vicious cycle within that phonological loop. They can be broken of it. But it’s tough, because again, it’s like that loop has been reinforced over and over and again, depending how long they’ve gone like that.
Bill Gasiamis 19:29
So I’m a glass-half-full kind of guy. So when somebody says one word, I’m figuring okay, we can get two words. I’m certain of it. And then I’m not a speech pathologist. So I don’t know the process, but I just stick on the fact that one words possible two words possible. We’ll and then we’ll work on three.
Bill Gasiamis 19:50
So I figure that perhaps. And this is just me running with new hypotheses as you’re describing what you’re describing. If the word that comes out is an emotional response, I feel like then what we’re doing is perhaps bypassing the head and creating a heart response.
Bill Gasiamis 20:17
And it’s kind of recruiting the heart to get the communication going where the head has not been able to. And maybe what that sounds like to me is that, although that is a positive, because we’ve got one word, and we’ve got our way of expressing something, we’ve got some kind of expression.
Bill Gasiamis 20:38
Perhaps what we’re doing is, again, that could be one of those things that diverts away from rehabilitating the head loop the head path in communication from the mouth and the brain. Does that all resonate with you? Is there any thing there that kind of sticks out with you that you think, perhaps is plausible?
Brooke Lang 21:03
I think if it’s that emotionally driven word, you know, yeah, I do think that there has to be sort of something that shakes things up of it. And I mean, very much aphasia therapy has to involve some sort of emotional support.
Brooke Lang 21:25
Again, the more our mutual, individual that I haven’t really worked with, but sort of assessed, I mean, just the tension, you can see it, everything builds up. That is the worst thing for somebody with aphasia, but again, what do you do, he’s trying so hard, he’s frustrated, you know, but until you get that person to relax, figure out a way to kind of work through it, words are not going to come out the only thing to come out is that backward.
Brooke Lang 22:01
But what’s interesting, too, about those individuals, more so I think, when it’s not an emotionally driven word, like the dooey dooey situation, if you play a video back of them, talking in their dooey dooey dooey, and you say, you know, does that make sense what you’re saying, then?
Brooke Lang 22:25
They say yes. So when they go back and listen, they’re processing, what’s going back in is not accurate. So the problem becomes they’re not aware always, of what’s coming out of their mouth, which is what makes them sometimes a very challenging treatment candidate.
Brooke Lang 22:48
You know, first you got to make them aware. So and it’s different. Again, everybody’s kind of different. Sometimes the awareness piece can be a little bit better. But that can happen too you got to think about not just what’s coming out but what’s being looped back in.
The three-pronged approach to stroke recovery and restoring speechBill Gasiamis 23:08
Yeah, I want to go back a little bit to what you said about the tension and the stress and all that kind of stuff. And I’ve always said, that stroke is a three-pronged approach, a recovery to stroke is a three-pronged approach. It’s emotional, its psychological, and its physical.
Bill Gasiamis 23:31
And in those headings, there’ll be little subheadings. And for emotional, it might be connecting to spirit or finding God or whatever. And then for psychological, it might be coming to terms with things, it might be letting go of old thought behaviors and thought patterns about what you’re capable of.
Bill Gasiamis 23:50
And for physical that might be I’m afraid to walk and of falling over. And then gets stuck just pushing through the physical thing. So that you can rehabilitate your, your arms, your legs, and maybe you have learned-non-use. So somebody has had a physical injury, they’ve learned not to use that arm, and then that’s the biggest thing standing in the way of them using their arm rather than the injury.
Bill Gasiamis 24:15
And it sounds like what you’re saying is you’re confirming my idea, my thought that if you don’t deal with anger, you can’t create the right space, perhaps, for things to flow in a way that will support speech. And the way I see it is when you’re tense and angry, not only is your physical body in a different state, because you’re all tense and tight and you can’t move properly, well then that will impact your muscles of your throat and the way that your mouth works and your jaw works and all that kind of stuff.
Bill Gasiamis 24:58
And then will also impact the kind of words that you’re going to get out. So I feel like it decreases the number of words that you can practice simply because when you’re, I know when I’m seriously angry, I can’t talk about love. And I can’t talk about excitement.
Bill Gasiamis 25:14
My vocabulary just decreases dramatically. And it’s not normally nice. So that being able to work on one’s self, as well as have speech therapy seems to be something that has to happen together. And that’s what I try and encourage my clients to do, regardless of whether they have aphasia or not.
Bill Gasiamis 25:43
I try to encourage them to do their therapies, simultaneously or together, where one day is speech therapy in one day might be psychological counseling, one day might be physical therapy, and it’s all being done. Because one does support the other. I feel like they all support each other.
Brooke Lang 26:07
Yeah, I mean, without question, the whole premise behind my practice is treating the whole person. Right? If I’m just doing speech and language sessions, and that’s it, and I’m not considering anything else in that person’s environment, whether it’s internal or external, I’m failing them.
Brooke Lang 26:30
And so yeah, I mean, I love what you’re saying. And I work on physical, with my patients. Again, I’m not a physical therapist, but we can absolutely incorporate gestural movement I make my patients use their right side, which is usually having credit. And they’re typing with their right hand, or they’re gesturing with their right hand.
Brooke Lang 26:58
But then the emotional piece, I think, is huge. And again, if that’s not taken care of, it stands in the way so much. As I’ve worked more with individuals, especially ones that get that tension, you can hear the difference in their voice when they let it go.
Brooke Lang 27:22
Like, they literally have a different voice. And I say to them, I said, I bet that’s your voice. And it’s right on. And they start to realize that as soon as they just reset, I use that a lot. Like just stop, reset, take a breath, let it go. And as soon as they kind of just let it go. That words there.
Brooke Lang 27:45
Now, not always right. But like there is something to that. And I know there’s been a lot of research starting up to with like mindfulness in aphasia therapy. And I mean, again, I think there’s something to be said, for that I think you have to whatever approach works for you. But again, that the emotional, mental well being has to be taken care of.
Bill Gasiamis 28:12
There’s a thing you hear about in physical therapy, the plateau. And when people reach the plateau, they get sent off to go home, because apparently, it’s too hard to train people who are at a plateau. And, you know, therapists who are well intentioned will say, that’s probably all you can expect to get back. Is there a plateau in recovering speech? How do you guys deal with a plateau? I don’t know if there is one.
Brooke Lang 28:44
There are people speech pathologist neurologists who will say that there is there is not a plateau and it really bothers me to hear that word. Or when people come to me and say, you know, I’ve been discharged from therapy because my speech pathologists told me, I’ve plateaued, it’s like nails on a chalkboard.
Brooke Lang 29:09
Because, again, that can make the difference between that person saying, Okay, I guess I’m done. And just being where they’re at, versus being somebody like yourself, who has had a heck of a recovery because you kept pushing forward. And sometimes it’s all it takes for them to kind of be crushed. And they might not pursue anything further. And it’s, it’s just not the case. If they’re continuing to work at it. And there’s some support around them. People with aphasia can continue to get better for years and years.
Bill Gasiamis 29:46
We have definitely discussed how we can get in our own way of recovery. But then, there’s some other things that happened to get in the way recovery, well, meaning loved ones sometimes just might get in the way, and loved ones, or people who are not well meaning and they’re not necessarily loved ones.
Education and involvement of family members
Bill Gasiamis 30:08
But what are some of the tips that you can give to people who are trying to support somebody with aphasia? Because they would be completely not understanding it, in most cases that would have no idea how to even get their head or wrapped their head around that. And they would have these ill formed ideas of what the other person perhaps is trying to do or not doing or how lazy they’re being or what are some of the tips and how do you involve family members in the rehabilitation or one of your clients?
Brooke Lang 30:44
I mean, I think the first thing is making sure that they’re educated. And unfortunately, at least here in the US, when people are discharged from the hospital, a lot of times, they don’t even know they have aphasia, or they That term has been thrown out, and they have no idea what it is.
Brooke Lang 31:05
And so I think just education of with both the individual who’s experiencing the Aphasia, and the caregivers, or loved ones, or whomever they are, and involvement in therapy, a lot of times, you know, they come to the clinic, and the loved one sits in the waiting room, I think loved one should be involved, if that person feels comfortable.
Brooke Lang 31:29
I have some individuals who work really well together, I have others who don’t. And that’s fine, too. But there’s always ways around it. I think it’s important for the individual with aphasia to be the first person or the main person to discuss what they want out of therapy.
Brooke Lang 31:51
I think a lot of times goals come from the wife, or the husband or the daughter, when we never asked well, what is it that you want? And it can be hard if somebody has trouble communicating, right? How are they going to tell me what they want.
Brooke Lang 32:07
But again, there’s ways to support their conversation. A lot of times they benefit from seeing words, I mean, there’s ways to kind of, again, help provide visual support, so they can understand and contribute to that process. So they need to be involved in the goals.
Brooke Lang 32:26
And I think it’s important to have not just, you know, therapy, but incorporate speech and language tasks, and even physical tasks, whatever it is that they’re trying to rehab, without making it feel like therapy, and creating sort of a routine. That because a lot of times these people are used to being at work all day, and now they don’t have a job, they can’t work. They’re bored, they get depressed, they’re isolated.
Brooke Lang 33:00
So if they have something to stick to, something to commit to, I find that they have a lot more success and, you know, maintaining that schedule, doing something productive, having a purpose for the day. So even if it’s, you know, they cook dinner every night, okay, so while you cook dinner, talk about what it is that you’re doing as you cook dinner. It’s it’s a language task that’s already built into what you’re doing.
Brooke Lang 33:29
But you don’t have to sit down and do work, you know, I think, go on a walk and talk about what you see. You know, there’s just there’s tons of things that you can do that, again, can be built into what you’re doing can kill a couple birds with one stone. And I think helped MIT help you progress a little bit quicker. And it’s kind of like a built in home program. Yeah.
Bill Gasiamis 33:56
I love that idea of speaking through your process, whatever you’re doing, whether you’re walking or cooking, and what you see, I think that’s brilliant. I mean, I remember that’s how my children started to communicate really well when they were kids, right? We would go dog, and then they would say, ah, bike, and then they would say all these things that they thought while they’re interested them and that they thought that I needed to know about.
Bill Gasiamis 34:23
So I liked that idea. You sometimes come across people who on socials or wherever, they’ll post something along the lines of not stupid stroke, or not stupid aphasia or not stupid one of the other communication disorders. I imagine a lot of people come in after having had successful life will call will name a successful one where they’re walking, talking, working and doing all that regular things that we all do.
Bill Gasiamis 35:02
And then they have this thing occur to them, and then they can’t speak, and perhaps feel that they are somehow unintelligent. But I know that people are judged that way by people who are ignorant to stroke and to all of the issues that it creates. How do you? How do you address that? How do you know if that’s a thing that’s happening to somebody while they are coming to therapy?
Brooke Lang 35:39
Um, well, you can tell just by their demeanor. For one thing, I think if if they’re feeling that way, and I always try to remind my patients because it is it’s easy to feel that way. Because as a society, I think we do tend to judge people based on how they communicate.
Brooke Lang 36:01
And what happens is, is then there, you know, the person with aphasia is being once they open their mouth, and somebody realizes there’s something wrong with them, either they’re looked at strange, somebody starts talking really loud to them, and they’re condescending, you know, and so, you know, even if that person didn’t say, Wow, you must not be very smart. They feel that way. You know, rightfully so.
Brooke Lang 36:28
But I like to tell them that there’s nothing has changed with how smart or how intelligent you are. All that knowledge, all that skill is still there. You just have some trouble access. It’s an access issue. But it’s all there. And I encourage them to tell other people that whether they have to show them on a on a note card, or, you know, because right, like you said, I mean, people make two T shirts out of it hats.
Brooke Lang 37:03
But it’s out there. Because I mean, people are being judged all the time, people think the individuals with aphasia or on drugs are, you know, mentally ill, I mean, you name it, and they’ve been accused of such so. And that’s just a lack of awareness, lack of education. You know, gotta do more with that.
Bill Gasiamis 37:25
We’ve spoken about aphasia a lot, simply because what inspired me to get in touch with you was my client telling me about how amazing you were and that I needed to get you on the podcast. And I did what my clients say.
Bill Gasiamis 37:40
But I imagine there’s a whole bunch of other issues that arise as a result of stroke, and then language and then communication. What are some of the other conditions that this conversation applies to that is not necessarily aphasia? Does it apply this conversation to other speech disorders? That we’ve?
Brooke Lang 38:03
I mean, I would say yes, I mean, I think, again, we take communication for granted. And don’t realize what we use it for, and how much we need it sometimes. And I think that anybody with some sort of speech impediment, or speech impairment, again, gets sort of judged. And I think it can be, you know, again, as a society, I don’t know if we’re always accepting of that. And I think we’re quick to jump to conclusions about what might be going on.
Brooke Lang 38:42
And there’s not always a whole lot of support, you know, for those individuals, so I think they’re always, again, whether it’s aphasia or something else, I think they’re always kind of struggling to find ways to, you know, make that order at the drive thru a little bit easier. And again, any high stress, of course, they’re going to be a little bit more anxious in that kind of situation.
Brooke Lang 39:04
Or if they even just have to go to the bank teller, and make a, you know, transaction, it’s a stressful situation. And as soon as they open their mouth, they have trouble communicating, you know, everything can kind of fall apart. I have found too, that when somebody has a physical impairment, which, you know, you can have aphasia and have no physical impairment, or you can be coming kradic on that right side.
Brooke Lang 39:35
So have some, you know, weakness on your right side, right arm, right, like the individuals who have physical impairments tend to be sort of less judged because there’s something obviously going on, right? It’s those individuals and again, they call it an invisible disability.
Brooke Lang 39:57
But it’s true, right? So they are Otherwise, if you’re completely fine, completely normal, and then they open their mouth, and it’s like, what’s going on? You know, so I think and I think the emotional impact on those individuals can be, you know, a little bit bit more, because again, they don’t have any other way to show that there’s something going on with them. And so they tend to be a little bit more isolated and have a little bit more trouble coping.
Bill Gasiamis 40:25
Yeah. Yep, I can relate to that. That was my challenge. I didn’t have aphasia, per se, and it was never diagnosed with a speech disorder. But I, after the second time, I had a bleed in my head, I lost my ability to communicate properly, I wasn’t, wasn’t diagnosed, I didn’t go to your neuro psych, for neuropsychological assessment or any anything like that was completely missed.
Bill Gasiamis 40:52
And then when I was at home, after having gone through the first bleed, and being again, appearing, quote, unquote, normal. And communicating, as I always had, it was strange for my wife to adjust to the second bleed, and everyone around me to the second bullied and how I was not able to communicate.
Bill Gasiamis 41:15
So I would struggle to start a sentence, sometimes I would start a sentence, and then not be able to finish it. Sometimes, I would be in the middle of a sentence and just go on to a completely different tangent and didn’t even know what I started out trying to say. And that was the hardest part, the hardest part was getting the looks.
Bill Gasiamis 41:42
And then people thinking that I was joking, or I was being funny, or all these things to do was have my say, say something that was relevant to what was happening to me or I needed to get across. And it was really difficult. And then because I also have left side deficits, where my left side feels completely different to my right side.
Bill Gasiamis 42:05
People assume again, that I’m 100% recovered or have overcome everything that stroke has thrown at me. And I can say that, perhaps emotionally and psychologically I have I’ve overcome it all. But I haven’t physically because I can never overcome at all, because those things that I’ve got a permanent, and when I have a bad day, those things.
Bill Gasiamis 42:34
They express themselves more, those deficits express themselves more, and they make it harder for me to go about my day, be it stay up late, if I want to go to an event with a family, be it feel good about going to being out in public or in crowds, feeling good about walking, feeling good about even communicating, everything kind of changes.
Bill Gasiamis 42:59
And when deficits get exacerbated, so to speak, when I’ve had a big day. And even though I’ve been going through this now for nearly 11 years, trying to get other people on board with my condition is impossible, because there’s no other way for them to get on board, other than knowing exactly what I went through by going through what I went through. And we don’t want that. But I’m a bit of a party pooper.
Bill Gasiamis 43:24
I’m the guy who goes off or probably don’t want to go down there today. Or I think it’s time for me to end the day or I’ll come to the pub with you, but I’m not drinking. And it feels like I’m always the guy who gets in the way of people’s fun, and how other people interact with us is really strange that they’re not able to adjust to interacting with people who are will call ourselves different to a different.
Bill Gasiamis 43:57
And I imagine that one of the hardest things for people to do who are around somebody who who has communication issues is I expect that that would be even one of the hardest things to adjust to. And I’m not saying it to have a go at these people, our loved ones, our friends, I’m just saying it to make people aware of what might be happening amongst many other things that might be happening. It’s a real challenge.
Bill Gasiamis 44:29
And I think you can have an aphasia discussion with somebody like you every second day and come up with again, new and different ways of approaching this and seeing this and it’s a never ending conversation.
Bill Gasiamis 44:44
That’s basically why I thought what we needed to do is reach out and give people and encourage people no matter how long they’ve been on their aphasia journey, to still go after speech, and to an even if They’re okay, not communicating the way they used to maybe just get curious about what you might be able to achieve. Just for fun.
The importance of finding a new identityBrooke Lang 45:09
Yeah, absolutely. I mean, I feel like there’s so much I could say about everything you just said. But you know, I mean, I think, again, a huge part of their identity is they’re robbed of their identity, whether it was their role in their family or their work, you know, they had to completely shift and that’s a big task.
Brooke Lang 45:39
And, again, one that’s ongoing, and I think they’re always kind of searching. But I always encourage, you know, go try something different, something that you’ve never, in fact, I had that discussion with one of my patients today is like, I’m tired of sitting inside, and he can’t drive.
Brooke Lang 45:55
And so he’s, you know, depending on his wife and his daughter to cart him around, and they don’t always have time to do it. And so I was like, how about a, you know, trying to learn an instrument or doing a puzzle, I mean, he just turned his nose up and everything, but again, you know, you can’t expect to keep going through the way you necessarily did before, you have to kind of be willing to adapt, and try new things.
Brooke Lang 46:21
Um, but I also think that, to your point about feeling different in social situation, I think that can be one of the biggest things, and I think people are uncomfortable with silence. And so we avoid it. So if that person is having trouble, and it’s awkward, right, I mean, let’s just call a spade a spade, it’s awkward when you’re face to face with somebody is really struggling, or not saying much. And you’re having to constantly be that person.
Brooke Lang 46:58
But you know what, again, they are the same person, they want to have a conversation, the more that they’re out there interacting and socializing, the better they’re gonna get. And, but it’s hard, and I don’t I have talked to a lot of people about this.
Brooke Lang 47:17
And a lot of individuals find that they end up needing to find a new, a new social groups, somebody who didn’t know the old them. Because they can kind of start fresh, and I get that, but they’re still sort of mourning grieving. That past life, their past friends, that social life that they had, and I’m sure you experienced some of that yourself.
Bill Gasiamis 47:42
Yeah, yeah. I actually haven’t considered that with aphasia. But it’s exactly what happened. Right. So some people turn up. And some people don’t. Some people come out of the woodwork, we never expected them to turn up. And you’re really pleasantly surprised. And think great.
Bill Gasiamis 47:56
And then other people don’t turn up and they don’t know what to do how to be. And at the beginning, I used to get mad at them, the ones that didn’t know what to do, what to say how to be and the ones who made it about them. You know, might sound fatigued and they say, oh my god, I’m tired too.
Bill Gasiamis 48:13
It’s about me today shut up. It’s about me, you’re not tired. Like I am, I’m fatigued. Like I’ve never experienced in my 37 years, I just got tired going to the toilet. I mean, you know, enough with telling me you’re tired, because you were online gaming until three in the morning, and then you didn’t get enough sleep before you went to bed.
Brooke Lang 48:33
We’re not relating to this situation. Yeah, this is not something related.
Bill Gasiamis 48:37
Yeah. Right. And it’s like, okay. And then I, I like what you said about that, finding the new circle who didn’t know the old you because they don’t have to adjust their, their lack of, or that they don’t have to find a new way to do themselves. So I think that’s the biggest issue is being around people who have stayed the same, or while you have been forced to change or actually made a decision to change in the way that you interact with the world.
Bill Gasiamis 49:13
Makes them feel makes them have to look at themselves and they might not be ready to look at themselves, then, you know, it’s that whole perfect saying is like, it’s more about them than it is about me. And that could be a good sign. If it’s become about them, and they don’t know how to be around you.
Bill Gasiamis 49:35
Well, then that’s a good sign to just sort of give them your blessings and let them go away. And that will just fizzle out. And then hopefully, that’ll create some space for you to meet new people. But in order to meet new people, you have to go with the new people. You turn up and you have to, it’s hard.
Bill Gasiamis 49:57
Yeah, you have to be okay. Yeah, Don’t remember to go there with your deficits and go, This is me, you know, I’m here to interact with you. But I might not even know how to do that at the moment because I haven’t got my voice and maybe the only word I can say is back. And if that’s the case, hopefully, you’re not gonna take it the wrong way. Right?
Bill Gasiamis 50:18
You know, it’s really complicated. But it’s a time for growth, it’s a tough an opportunity for everyone to practice some personal development and some personal growth. And in amongst physical recovery, emotional recovery, mental recovery, somewhere in there goes personal development, I think it’s really, really important to do personal development and go within and see what you’re up for.
Bill Gasiamis 50:44
What you need to attend to, and same as the caregivers, it’s time for, you can’t be the same person around this person who is struggling with all these illnesses, because you’re just gonna get frustrated yourself, or you’re gonna get in the way, it’s a saint, that turns up to this new version of your loved one, and just does the right thing and the perfect thing every time you’re not going to, it’s just the way that it is it’s normal.
Bill Gasiamis 51:13
And I think it just creates this, this is what strike did for me, it just created an opportunity for personal development. And I had never done anything like that before. But most importantly, I never had a big why that was my big why that was the biggest, why ever heard. He was like, Oh, my God, I want to be on this planet for as long as I can.
Bill Gasiamis 51:34
And I want to interact with it as much as I can. How can I do that with all the stuff that I’ve got to live with my deficits and all the challenges. And so Okay, I think I’ve got to overcome some of my own personal belief systems, that might not be valid anymore, they may have been valid at the day before the stroke.
Bill Gasiamis 51:55
And they might have been valid in my 20s, and my teens. But that can’t be how I go about approaching recovery after the stroke and with the deficits that I have, it’s just not gonna work, I need new ways to go about it. And I went out of my way to involve other people like therapists.
Bill Gasiamis 52:19
When I knew, for example, that I needed a therapist, sometimes I didn’t know I needed a therapist, and nobody told me like that gap that occurs for people. And I’m still nearly, you know, I mean, living, I’m approaching nearly what are we it’s, it’s been 11 years, February was 11 years since the first place.
Bill Gasiamis 52:41
So I’m still going after improvement, recovery, bettering myself becoming more or no more, less ignorant. And this is what the podcast is about. It’s even me even I don’t know how to interact around people who have aphasia, because I’ve never had aphasia, so I don’t really get it.
Bill Gasiamis 53:04
But I’m better than most people, because I had a time where I was spaced out and didn’t know how to communicate. So that’s just me kind of trying to encourage the rest of the world to feel okay about being in a difficult spot, and then be comfortable that they can still chase recovery, even though it’s been 1257 10 years.
Brooke Lang 53:32
Yeah, I mean, I think, you know, I worked so hard to get all of my patients to where you are, right? Like, how do I get them to accept this terrible thing that’s happened to them, but also pick it into year, and use education, you know, advocacy, and ultimately empower themselves to keep moving forward and feel good about themselves.
Brooke Lang 54:03
You know, even if you do go to the pub, and meet somebody new, you know, tell them, hey, just so you know, I kind of stroke and I have some trouble talking. Because I think just opening that door, lets them you, they become a little bit more patient with you, you feel a little bit less tense, because you’ve thrown it out there.
Brooke Lang 54:28
And not everybody’s comfortable with that. But then you you’ve also educated you say, Hey, I have aphasia. And they might think what the heck is that? But you know, you’ve already told them, you have trouble communicating because you’ve had a stroke. That’s enough. You know, and I think the fact that you’ve educated somebody in that situation and, you know, sort of advocated for yourself, and it can be kind of a nice
Bill Gasiamis 54:50
cycle. Yeah, um, and the next part of that conversation could be and by the way, I still like, footy. We call it for your big opponents to like football, or I still like I spool or I still like whatever. And it’s like, just address the elephant in the room. And now let’s talk about dumb stuff that you do when you’re at a pub.
Brooke Lang 55:11
Right? Exactly. Exactly. And I find too, that I think that the caregivers to your point two and still holding on to their old life. And then they’re the middleman between inviting the friends over and talking for the individual with aphasia and trying to, like call their buddies over and have, you know, hanging out while watching a football game. And it’s just not the same. You know, and it just creates this this Disrupt.
Brooke Lang 55:45
And they ultimately, it wasn’t a fun social engagement, it was, you know, exhausting for the caregiver. And the other one didn’t have fun, because they didn’t talk the whole time, you know.
Brooke Lang 55:57
So I think it’s, it’s about sort of figuring out letting go of what was and what your thought might be, and, and moving forward, but I always also allow my patients like, Hey, have your crappy days, have your days where you sit there and write, we’re not all we don’t all have wonderful, perfect positive days, so and you by all means should be allowed to do that.
Brooke Lang 56:22
So have your crappy day, cry, feel bad for yourself, sit in your room, and don’t do anything, as long as you pick yourself back up that night? You know, and again, who am I to say that I’m not going through it, but I just feel like if you’re sort of, you know, their feelings are certainly warranted, and you let them know that.
Brooke Lang 56:46
And, and that it’s okay to have those crappy days. It allows them to kind of, you know, overcome that and move forward. Because, again, the recovery is, it’s an ongoing, kind of lifelong thing.
Bill Gasiamis 56:59
Yeah. I like to give people the opportunity to think about a question that goes something along the lines of whatever you want to do, you can do your however you want to behave, you can behave, however you want to think about that. You can think about, just ask this question of yourself, if you can, every time it’s like, is this behavior serving me the behavior that I’ve chosen right now? And the way that I’m thinking right now and the way that I’m talking right now?
Bill Gasiamis 57:27
Is it serving me in the long run? And if it isn’t, then maybe you want to park it? Maybe you want to park that behavior and just leave it there? And just maybe, come back to it one day, if you feel like it? Because it’s been a while since you behaved that way. Or you needed to do that or say that.
Bill Gasiamis 57:48
But then what you might find is that you don’t go back there as often as you perhaps had in the past, and that you might never go back there at all. How does this serve me has been one of the questions that has just completely changed my life. Because it’s, it’s usually comes after that pity party where I feeling bad about myself.
Bill Gasiamis 58:11
And then, and then it’s like, okay, or it’s a it’s like a reset, but then it’s next level, it’s beyond just the reset, because it also drops, it makes me drop something and leave it away and leave it aside and not go back to it. And then it’s and then it’s the relearning and the readjusting of, okay, what can I do, instead of a behavior that doesn’t serve me? What can I do right now that’s going to serve me.
The importance of asking yourself “should” vs “want”Bill Gasiamis 58:43
And in my case, if I was going through the inability to walk, for example, and I was having a bad day, and I had just fallen, because I took a few falls at home, it’d be okay, I didn’t break anything. And I’m not going to get up off the couch like that, again, I’m going to pay attention to where my leg is next time.
Bill Gasiamis 59:04
And once I do that, I’ll get better at it. And then I’ll feel more comfortable being out and about in the community walking on my own without my wife there, because other than walking, I was very physically capable, and cognitively capable of being out and about on my own.
Bill Gasiamis 59:23
So it’s like, okay, so I’m not going to, I’m not going to that behavior of just getting up off the couch and, and listen to, it doesn’t have to be a bad thing. But my behavior of just getting up the couch without thinking because that’s what old bill a week and a half ago was doing.
Bill Gasiamis 59:44
That can’t be the way that I get off the couch anymore, especially if I’m holding a plate of a plate where I’ve just finished the meal. I’ve got to do one or the other. I’ve got to use my hands, grab the couch, stand up, pay attention to when my leg is move forward and then pick up Play, for example, and take it to the sink.
Brooke Lang 1:00:02
So can I ask you something? Yeah. So does. Do you think that that just asking yourself, Does this behavior surfing? Allow you to then discover and tap into the behaviors that are more beneficial and end user? Yeah, so what was there something that has to happen in between? They’re
Bill Gasiamis 1:00:30
not necessarily but it may not even I may not even get an answer, an hour or a day or a week after that. But what it does do it all, it automatically creates a place where my mind body, spirit, soul, whatever you want to call it. As soon as I asked that question, it knows the truth about what the answer is.
Bill Gasiamis 1:00:55
And then it kind of interrupts my automatic nature of going there. And then, even if I do go there, and I asked myself that question a second time, it’s kind of interrupted the neural pathways that are previously just firing off. And then, and then it’s slowly just goes away.
Bill Gasiamis 1:01:22
And one of the things that I used to do was talk about myself in a negative way before the stroke anyway. And then I realized if I’m going to, I used to say stuff, like, nobody wants to do business with me when I’m doing business out of a garage. But as if they knew where I was doing business out of, you know, I’ll never have a successful business if I don’t have an office, and if it’s not this size, and if it’s not that and if it’s not this, I’m not driving this car.
Bill Gasiamis 1:01:49
And then I used to compare myself to other people comparison in recovery is also a bit of an issue people compare, and then they put deadlines on on things. Yeah, yeah. And I used to do that I used to compare myself to people who I assumed were more successful than me.
Bill Gasiamis 1:02:06
And I realized real quickly if I, if I do that, there’s that behavior, comparing myself to other people serve me know, what does it do what it makes me feel bad about myself, it makes me feel emotionally drained. It makes me feel unmotivated makes me feel all those things. I don’t want to feel that way. I don’t know what I prefer feeling.
Bill Gasiamis 1:02:29
But I know I don’t want to feel that way. So while I’m, while I’ve discovered what I don’t want to feel, and I’m learning what I prefer to feel, what I like to do is just get those language patterns, does that behavior. I like to get those embedded, does that behavior serve me?
Bill Gasiamis 1:02:47
Does that behavior serve me because then I become the person who tells myself rather than my wife, or my son, or my mother, or my father telling me, hey, you shouldn’t be doing that. It’s different for you to tell me I shouldn’t be doing that. But if I’m telling you now, that’s a very different thing. And I like to.
Bill Gasiamis 1:03:09
And and this is an analogy that some people might think is weird, but and that’s how I approach God. Right? So this is a very interesting thing for me, that I kind of got to after the stroke, because everyone was telling me did you find God and I know people found God, and that’s great.
Bill Gasiamis 1:03:27
No issue. But for me, I, I respond now by saying, God, I am God, God is me. Not the I’m not the guy down the road telling you on Jesus, I’m not that guy. But God’s within me so that it’s not an external source that I go to for solutions. And then if that solutions don’t come, I get disappointed in that external source.
Bill Gasiamis 1:03:49
And then I feel like I have nowhere else to go. So I believe the solutions are within us, I believe, I’m God, I believe that I know what’s best for me. But I just need to ask myself the correct questions. And stop saying certain things that I don’t need to say.
Brooke Lang 1:04:09
I think that holds you accountable. That’s, it’s
Bill Gasiamis 1:04:11
all about me. Yeah, yeah. And when I go to therapy bait with a speech pathologist or physical therapist or an occupational therapist, when I go there, what I’m doing is going to the for them to tell me the things that I didn’t know that I needed to know about recovery.
The importance of taking control of your recovery
Bill Gasiamis 1:04:32
And then if they’re telling me what I needed to know about recovery, and I’m taking responsibility for my own recovery, and not making it your responsibility, well, then we’re going to work together really well as a team. And I remember one of the things that dramatically changed the way that I used to see therapists before I became unwell.
Bill Gasiamis 1:04:53
So I had my my chiropractor on speed dial. We have a property maintenance business, so we lift heavy things and we work too hard and we bend the wrong way. And we do all this stuff. And I used to outsource the way my body felt, basically outsource that to him. I’m paying you, you fix up my back, I go to work tomorrow. Right?
Bill Gasiamis 1:05:17
And it was the way that I went about it for about 15 years. And he would say stuff like, Okay, well, you need to pay attention to how you lift, you need to pay attention to this, and you need to pay attention to that. And it was just in one ear, out the other. And then it was to the extent where when I, when I had entire, my entire left side wasn’t working.
Bill Gasiamis 1:05:42
I went to him and told him to fix my back. And he said to me, it’s not your back, go to the hospital. And I said to him, I can’t go to the hospital. I’m busy tomorrow, you need to fix me now. And I need to go to work tomorrow. So I had got to the extent where I was making it their responsibility to do all the things that were necessary, and I wasn’t taking responsibility.
Bill Gasiamis 1:06:06
So that’s one of the things that I got out of stroke recovery very early on was, I need to become god, my own God within me, I need to search in me for the answers. Somebody now needs to tell me what the right questions are to ask. That’s all it was. And one of those right questions was, is that behavior serving me.
Bill Gasiamis 1:06:29
And nobody ever asked me that. And therefore I never knew to ask that. And when I did learn to ask that it just changed everything for me, because I realized that Brooke wasn’t the worst therapist, and I happen to offend the worst one out of all the therapists. And my occupational therapist wasn’t terrible one because she looked at me funny.
Bill Gasiamis 1:06:53
And it was the way that I was responding. And these people were there to help me. And I was doing them a disservice, because I wasn’t being the proper, me, the proper patient, the right kind of patient, that’s gonna get them the results that they can get for people. It’s all about me, and it became about me.
Bill Gasiamis 1:07:14
And maybe there is some other people in the periphery that make made my life hard, who didn’t know they were doing it. But in the end, it was more about me than about them. And that’s kind of what, why I wanted to really get you on here to discuss some of the things that we’ve already discussed.
Bill Gasiamis 1:07:36
So that when when somebody has said to you you’ve you’ve hit a plateau, that’s actually not about them. That’s you believing them. And you thinking that that means that you should now listen to them, and that you should stop going after your recovery. all comes down to you how you respond to people like that.
Bill Gasiamis 1:08:01
So hopefully, that gives people some things to think about. What do you reckon?
Brooke Lang 1:08:08
Yeah, I, I think you’re you’re right on. And I think it’s, I think that the challenging part is, sometimes I don’t think people know how to take control of their recovery.
Brooke Lang 1:08:24
And once that, you know, and maybe it’s different for different people, right, like the answer for you was that question, it really helped you and was a game changer. That same question may not, you know, be the thing for people, but I think it’s so hard to help people search for whatever that that thing is to help them take control. Yeah.
Bill Gasiamis 1:08:52
Yeah, the minds of the example that I gave, that kind of opened up the door, for me the path for me, so whatever that is for those for somebody else, hopefully you can discover it by being a little more curious about your own needs.
Bill Gasiamis 1:09:10
And the deeper needs not, I need my I don’t know, whatever you used to do, I need to do the deeper needs, the ones that really matter to make your life better and to help you get back on your feet, you know, whatever they are. All I’m saying is that if somebody as dumb as me could do it. Anyway, anyone can do it.
Bill Gasiamis 1:09:32
Because I was quite I was quite an intelligent guy. I I pretended I was confident I I interacted in a way with people that nobody would know that I had, the insecurities that I had. And when I call myself dumb, I’m not being rude or mean to myself and I was being ignorant.
Bill Gasiamis 1:09:54
I was completely ignorant about how I was treating myself and how I was behaving. When I started to learn about myself, and my ignorance about me went away, I got out of my way, I got out of the way of my recovery. And I started to take into consideration things I never had before.
Bill Gasiamis 1:10:13
And I started to I started to park those old thoughts and behaviors, like I started to suspend my disbelief. And I started to just put things aside and go, Okay, well, let’s park that let’s park that let’s park that everything got parked. Because I didn’t. It wasn’t going to work. I wasn’t going to be able to be a new me get recovery.
Bill Gasiamis 1:10:39
be around for my kids go back to work. You know, it took seven years by the way, don’t get me wrong. It took me nearly seven years to get back to work. And to start a podcast, I started the podcast, going to five years or four or five years after all this, nothing happens straightaway or this person that you see that’s got all these thoughts.
Bill Gasiamis 1:11:01
And these ideas that didn’t come overnight took a long time. So that’s the other thing. I don’t want people to think that because I’m talking about this the way I am. i It’s easy for you look at how you are, look how you’ve recovered. I wasn’t it wasn’t all roses. For me. It was really hard for many, many years.
Bill Gasiamis 1:11:22
And it’s still hard. And that’s why I have a podcast because I need to talk about it every day. This is my therapy. And and I don’t do it just for fun. I don’t do it just so that everyone else can benefit from it. I also benefit from this podcast. So you see how,
Brooke Lang 1:11:39
again, you Yeah, you and you’ve taken your situation? and turned it into like, I mean, it’s the type of people that say my stroke, you know, changed my life for the better. Like what? Yeah, but I mean, again, it’s like, you are that perfect example.
Brooke Lang 1:11:54
And it’s, it’s fascinating and inspiring to to hear you because I think this is what so many people, you know, dealing with, you know, stroke deficits and aphasia need to hear and talking with somebody who’s gone through it, there is such a lack of mental health professionals that are able to and have the knowledge and the depth of knowledge is necessary to really help people with and to know, how do I tweak?
Brooke Lang 1:12:29
How do you have talk therapy, right for somebody who’s struggling to cope. And there’s a huge gap. And it’s bad, because these people need help. And they need that support. But to me, I’m starting to feel more and more that as I’ve searched and searched for, you know, a mental health specialist who I can bring on board with me and help help my patients.
Brooke Lang 1:12:56
I think it’s people who’ve gone through it, who are ultimately going to be the best nailed or hired the best like emotional seriously. I mean, I have I did hire one of my young stroke survivors, and she runs groups for me, and she has one on one meetings with some of my patients.
Brooke Lang 1:13:15
And I think it’s been like the best matchup because we’ve been through it, they know. And, you know, if somebody and again, it feels good for her to I mean, she’s benefits from it just as much. I think there’s some power in that.
Bill Gasiamis 1:13:30
Oh my gosh, there is in Melbourne, there’s a event called the night a night for aphasia. And it’s run by occupied by speech therapist, who I’ve interviewed in the podcast, I can’t remember when but it was quite a few episodes ago, but I’ll put it in the show notes for anyone who wants to go back and listen to that.
Bill Gasiamis 1:13:48
And Olivia, oh, here is her name. And Olivia has organized a night where a whole bunch of people get together and raise money for different causes related to aphasia. And it goes to help some other people that are going through that get therapy, all sorts of different things.
Bill Gasiamis 1:14:10
And the main speakers are people who have had aphasia and gone through recovery with Olivia and her team. And they get on stage and they present their story. However long it takes or however it comes out. Everyone’s got kind of a different way to communicate, but they’re all there.
Bill Gasiamis 1:14:32
And all the people around us were young occupational therapists coming through their studies and doing apprenticeships and all different sorts of things. Stroke Survivors, there was a whole bunch of other people that weren’t stroke survivors.
Bill Gasiamis 1:14:46
They had aphasia, and then she felt she filled out a room there was probably about two or 300 people there. It was a sensational night and and it’s the kind of night that if I I had aphasia, I would want to be in the crowd, listening to those people talking going, they used to be like me in the crowd, and now they’re on the stage.
Brooke Lang 1:15:13
And it’s like, I mean, it doesn’t get more inspiring than that. It doesn’t.
Bill Gasiamis 1:15:17
And that’s. And that’s the part where I sort of said, if somebody’s as dumb as me can recover from things that are really difficult to recover from, then anyone can.
Bill Gasiamis 1:15:29
And if you relate to being dumb like me, then you’re the perfect candidate, like, you’re going to be okay, you’re going to get through it, and you’re going to find a way, you’re going to find a way to be in the world, and to get back into the world and to make your mark on the world and to do all the things that you want to do.
Intro 1:15:47
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind, like, how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, or doctors will explain things that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 1:16:12
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called seven questions to ask your doctor about your stroke.
Intro 1:16:31
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website now, recoveryafterstroke.com and download the guide. It’s free.
Bill Gasiamis 1:16:47
Always loved referring back to the physicist Stephen Hawking, you know, the guy couldn’t speak, talk, walk. Couldn’t do anything. And he was still at the top of his game. And everyone else learned how to be around him.
Bill Gasiamis 1:17:10
They all adjusted themselves, they all stepped up. And they all grew. And they all found new ways to interact with somebody who most people would have written off. And the only person who didn’t write himself off was him.
Brooke Lang 1:17:29
Right.
Bill Gasiamis 1:17:34
If he had written himself off, everyone else would have just gone. Oh well, forget this guy. Let’s move on to the next guy.
Brooke Lang 1:17:42
Yeah, I mean, there’s that it’s a powerful thing. You know? Absolutely.
Bill Gasiamis 1:17:48
Brooke, I really appreciate you saying yes. And being on the podcast. Thank you so much for joining me.
Brooke Lang 1:17:55
Of course, I appreciate you having me. And it’s so nice to meet you. And hear your story as well.
Bill Gasiamis 1:18:02
That’s a wrap. Thank you for the chat. I mean, that’s brilliant. We could just talk about this forever.
Brooke Lang 1:18:11
Yeah, I would love to pick your brain more.
Bill Gasiamis 1:18:13
Yeah, that’s deep conversation.
Brooke Lang 1:18:15
I mean, that like, again, I am hurting for support from my people. And I end up doing a lot of counseling. Right. Like, that’s my job, too. But it’s like, sometimes I’m like, am I enough? I don’t think I am, you know.
Bill Gasiamis 1:18:33
You’re not enough. And neither am I, together, we make it a bit better. And that’s why I recruit people to come on the podcast like you so that we can because I know I’m not enough. I can’t do enough. But what I do is a lot and people reach out to me every day and tell me how much the podcast has changed their life and how it has helped. So I know that our chat will do that for somebody and for multiple people. And this is going to Demetrius immediately.
Brooke Lang 1:19:05
What an interesting guy, you know, and I mean, his significant other has said how he’s really connected with you. And I think he’s, you got a tough one there.
Bill Gasiamis 1:19:20
I just treat him like I know the way he wants to be treated, which is doesn’t want to be fussed about and all that stuff. And Yanu she’s a lovely emotional lady. So she struggles with his state. And he’s trying to tell her just leave me the fuck alone. Like, don’t worry about it. Move on.
Brooke Lang 1:19:46
And if he’s okay that you know, who are we?
Bill Gasiamis 1:19:50
Yeah. And I realized that he was stuck in the house and he needed to get out and about and a couple of weeks ago I told him do some research on how to get a taxi to get to one of his favorite locations where there’s toilets, where there’s all the things that there needs to be, so that you guys can go out whether it’s half an hour or an hour, and then get back, just so that you can see that it’s still possible to go and do things.
Bill Gasiamis 1:20:18
And they did. They had a ball had a really good time. I put it out there to everybody who I interview who kind of works in your space, or any space that helps the wives. Let me know if there’s anything I can do for you. That’s exactly what I’m here for.
Brooke Lang 1:20:38
Can I ask you? So I have a group that I run, like, once a month. And would you be willing to come chat with them?
Bill Gasiamis 1:20:47
Absolutely.
Brooke Lang 1:20:49
And just, you know, again, I know you have a different experience, but I think also there’s a lot of overlap. And, again, there’s just some that need to hear, you know, a different perspective, one that might just, you know, resonate with them. I would love to have you, you know, I can shoot you an email or something.
Bill Gasiamis 1:21:15
I’m happy to, I’d be happy to and also, wherever that goes, we can see where it goes. Now also, I’ve got about 6000 people on Instagram that follow me. And let me tell you, what unbelievable community they are. When I asked them a question, boy do they answer. When I asked him for help, boy do they help.
Bill Gasiamis 1:21:37
They come out of everywhere. And they offer their thoughts, their support their questions, whatever. So if there’s some things that’s related to specifically an issue that you kind of want a bit of an insight on. I’ll get you onto one of those threads. And I’ll just ask them a question. You’ll be amazed at the stuff they come back with.
Brooke Lang 1:22:01
Yeah, yeah.
Bill Gasiamis 1:22:02
I’m even thinking right now. I’m even thinking of, you know, making a post, I just ask a simple question. What’s the one thing that helped you in your recovery with aphasia, or something like that? And they’ll just unload.
Brooke Lang 1:22:18
Yeah, yeah, that’s amazing. We just need more of you. And, you know, to keep building that community and that support, so people feel like, okay, you know, I got this.
Bill Gasiamis 1:22:32
When I was going through it, there wasn’t a lot. So now, there’s probably at least, I know, regular podcast episodes coming out from about three or four people around the world. And then there’s a lot of periphery, kind of every so often, and then here and there.
Bill Gasiamis 1:22:50
So there’s still a lot of extra things that they weren’t around before. But there’s about another two or three people doing what I’m doing regularly that are talking specific to stroke survivors about their recovery.
Brooke Lang 1:23:03
Yeah. I mean, it’s a good start, you know, we have a lot of work to do. But, well, I mean, thank you for what you do. You know, and I, again, I appreciate you getting in touch with me. But yeah, I hope this is not the last conversation we have, that’s for sure.
Bill Gasiamis 1:23:21
You reach out, I’ll be on board, anything you need.
Brooke Lang 1:23:24
All right. I appreciate that. And say here, there’s anything I can do.
Bill Gasiamis 1:23:28
Will do I’ll get this edited. And it’ll probably up. Next, this coming Monday, I’ve got a few others in the pipeline. But I’ll get this fast tracked, I’ll get it up and running. You can share it with your clients, if you feel the need. Well, you can, they would love to hear it. You could share it with your clients.
Bill Gasiamis 1:23:48
And then I’ll share it with Demetrius on purpose, I want to make sure that they get it and make him feel a little bit about you know, considering all these things. Do you feel that he is really capable of really grasping the concepts that you talk about listening?
Bill Gasiamis 1:24:09
Is aphasia related to is there a part of aphasia where listening is the issue is an issue or a comprehension of what you’re seeing? And then
Brooke Lang 1:24:19
yeah, it’s the processing part. But I I started to tap into it a little bit when I met with him. But then it just got kind of overshadowed with all the emotion that yes, I’ve never seen like, he’s somebody I will never forget my first interaction with just he’s just, there’s just so much there so much.
Brooke Lang 1:24:45
I felt Yeah, yeah. And, you know, you knew wanted to sign him up or intensive therapy with me three hours a day, five days a week now even my MO was motivated toughest again. It’s a tough, exhausting commitment. And there was I mean, when I assessed in our heads thinking there’s no way this guy’s read.
Brooke Lang 1:25:11
He may be at some point, but he’s still too ticked off. Yeah, it’s mad. He’s mad. I don’t know that he’s again, his his head mentally is not in a place that like, okay, you know what? This happened? It’s okay. I’m gonna do this to get better. He’s just not there. So to me, he needs to start to, you know, deal. Like, I don’t think he’s even dealt with what’s
Bill Gasiamis 1:25:41
happened. That’s pretty fresh. And he’s still missing his skull. So that’s
Brooke Lang 1:25:46
right. Yeah. I mean, he’s. So I think with time, I think he has potential. Yeah, I
Bill Gasiamis 1:25:53
agree. I find a few of my clients will kind of not touch base three to three, four or five times before they actually decide to come on board. And I didn’t do much with them. I just talk them through making them aware of how they’re getting in their own way. That’s all I do. I can’t, and then I listen to this read that, that kind of stuff.
Bill Gasiamis 1:26:14
But the fact that the advice, so to speak is coming from me is better than the advice come from somebody else. But a lot of them do take 1218 months, two years to sort of actually go okay, I think I’m going to work with you. Yeah, really interesting to see how many do that
Brooke Lang 1:26:34
you have, like one on one sessions with people or? Yeah, this might be sending some people your way.
Bill Gasiamis 1:26:41
Yeah. And then where’s the Zoom sessions like this, and what I, what I would love to do is do a group session, where we create a group we bring people in, and what they do is they prepare us with their questions. And then we just give them our answers, or we give them tools or tips or whatever, that would be my idea.
Bill Gasiamis 1:27:06
You know, let’s do it. So but I haven’t found and, and when I reach out to people like you, there’s always and I totally get it, there’s always the What’s In It For Me thing, and then the other person is like what’s in it for me, and it’s like, for me, there’s not that much in it, there’s not that complicated to work out something that’s going to make it work, I don’t want to do all of this for free.
Bill Gasiamis 1:27:30
Actually, I’m not making any money on any of it, except some of the people who come to me as a client. And, and if I tell you that they pay $150 for the entire year to talk to me as many times as they want. I mean, I’m not making anything out of it.
Brooke Lang 1:27:48
But that’s not why you do it.
Bill Gasiamis 1:27:49
That’s not why I started out, it’d be great if it turned into a career. But it’s not a career, I don’t make a living out of it. So that’s one of my biggest blocks, getting people who are like-minded who are in therapy in different therapies to collaborate, this space is for them, and they just haven’t worked it out. Because maybe being on podcast is also weird for them, and they haven’t stepped up yet. Because it’s all new, this podcasting world about stroke recovery, I get it.
Bill Gasiamis 1:28:21
So it’s all right. And then I’m writing a book. And the idea is that the book is going to bring people into a community, where I’ve got 6000 People not on social media, they’re in a private forum. And in that private forum, there’s discussions all around stroke recovery, every aspect of it.
Bill Gasiamis 1:28:45
So that has all been set up. But until I finished the book, I feel like for me that correct order is write the book, promote the heck out of it. And then encourage people in the back of the book and also as part of other interviews, encourage them to come into the free community.
Bill Gasiamis 1:29:01
And then in there, we can sell some courses that are easy to access 10 bucks a head or something like that, where they come into a group coaching session, and they just buy a seat for a particular event. And then we just take them through a pre prepared presentation and the rest of it.
Bill Gasiamis 1:29:25
And like I said to it, I can’t do it on my own. Like this is not something I can do on my own. I need to invite other people in and collaborate with me and share this space.
Brooke Lang 1:29:35
I like the way you think I like your mission. And, you know, let me know. I’m happy to help how I can.
Bill Gasiamis 1:29:48
Yeah. So in the meantime, just keep communication open if you need to if you need help, if you want to come back on the podcast if you want to share a win that you’ve had with one of your clients, you know, we can do it One minute interview, we can do a 10 minute interview, no rules.
Bill Gasiamis 1:30:03
And I’m just desperate to bring people together, especially therapists, awesome therapists, I really I want to bring people into my space and kind of make it their space. Does that make sense?
Brooke Lang 1:30:27
It does. Totally. Sounds amazing. Well, I’m very thankful to have met you. And yeah, we’ll be in touch. Okay.
Bill Gasiamis 1:30:36
Absolutely, Brooke.
Brooke Lang 1:30:37
All right. Thanks, Bill take care.
Bill Gasiamis 1:30:39
Have a lovely day. Thanks for joining us on today’s episode. To learn more about Brooke and the services she provides, you can go to iraphasiatherapy.com. And for more ways to connect with Brooke. And to download a full transcript of the entire interview. Please go to recoveryafterstroke.com/episodes. If you would like to try the course five foods to avoid after stroke, go to recoveryafterstroke.com/courses to get on board now.
Bill Gasiamis 1:31:10
And if you’d like to support this podcast, the best way to do it is to leave the show a five star review and a few words about what the show means to you on iTunes, and Spotify.
Bill Gasiamis 1:31:21
And if you’re watching on YouTube, comment below the video, like this episode, and to get notifications of future episodes, subscribe to the show on the platform of your choice. Doing this part makes a big difference to other people, finding the podcast people who have had a stroke that are like you who are stuck and looking for solutions and looking to not feel alone. So by doing that, leaving the show a five star review.
Bill Gasiamis 1:31:46
It’ll be shown more often by the search engines and it’ll be given preference so that people who are searching for this type of content can find it easier. And hopefully that’ll make a difference to their lives.
Bill Gasiamis 1:31:57
So really appreciate it if you can do a review. If you are a stroke survivor with a story to share about your experience, come and join me on the show, interviews are not scripted, you do not have to plan for them. All you need to do to qualify is be a stroke survivor, or care for someone who is a stroke survivor.
Bill Gasiamis 1:32:18
Just go to recoveryafterstroke.com/contact fill out the contact form and as soon as I receive your request I’ll respond with more details on how you and I can choose a time that works for us both to meet over zoom. Thanks again for being here and listening. I really appreciate you see you on the next episode.
Intro 1:32:37
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed all content on this website at any length blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis, the content is intended to complement your medical treatment and support healing.
Intro 1:33:11
It is not intended to be a substitute for professional medical advice and should not be relied on as health advice the information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.
Intro 1:33:32
Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be called triple zero in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department medical information changes constantly.
Intro 1:33:58
While we aim to provide current quality information in our content. We did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide however third party links from our website are followed at your own risk and we are not responsible for any information you find there.
The post Restoring Speech After Stroke – Brooke Lang appeared first on Recovery After Stroke.
Natalie Mazer had a whole in her heart from birth which caused a stroke that she believes ultimately saved her life.
Highlights:
01:08 Introduction
02:59 Stroke in the middle of pandemic
05:09 Natalie Mazer had an Atrial Septal Defect
09:28 Leading up to the stroke
19:19 What caused the stroke?
26:49 Professionals who really care about helping people
33:53 Thinking you’re better than you are vs actually being better?
46:47 What were you thinking when you had a stroke?
57:55 Stroke saved my life
1:11:53 Music therapy is a great tool for recovery
Transcript:
Natalie Mazer 0:00
I’m just such a different parent right now than I used to be I used to have a lot of energy where I could be very high functioning at work and I could still be very high functioning at home and get everybody ready and out the door for school and things like that.
Natalie Mazer 0:13
And I remember just trying to coerce them and guide them through the door. And of course, they’re all chit chatting at the same time and I’m just overwhelmed that I remember just kind of sitting down on the floor and bawling by the door.
Natalie Mazer 0:29
And all of a sudden my kids were running towards me like mommy are you okay? Are you okay? Like, what can we do? And that, to me was an epiphany. I was like, wow, like, my old ways are never gonna work. Like, the new way is really how can we position it? Like we’re a team. I’m one of you guys. We all got to look after one another.
Intro 0:56
This is the recovery after stroke podcast. With Bill Gasiamis, helping you navigate recovery after stroke.
Introduction – Natalie MazerBill Gasiamis 1:08
Hello, and welcome to episode 245 of the Recovery After Stroke podcast. My guest today is Natalie Mazer, a mom of three young kids working as an engineer who experienced a stroke that was caused by previously undiagnosed hole in the heart. While on the road to recovery from stroke, she also had to endure Keyhole Heart surgery to ensure the risk of further stroke was eliminated. Natalie Mazer, welcome to the podcast.
Natalie Mazer 1:36
Thank you. Thank you, Bill. It’s a pleasure to be here.
Bill Gasiamis 1:40
Thank you for being here. And thank you for preparing yourself for the interview. And for my podcast by taking a little nap. Before we started, why was it that you needed to take a nap?
Natalie Mazer 1:57
When I getting really tired unfortunately, a lot of my symptoms come back out, which some of it is speech, right? And also, I still struggle a little bit with processing and short-term memory, right. So I think I need that rest. And I need that break so that I’m not like in the middle of a sentence. And then I’m like, Oh, my gosh, Bill, what are we talking about?
Bill Gasiamis 2:25
Yeah. So clearly, you’ve had a stroke. Tell us a little bit about that part of the process? How did you get to be on the podcast? When was your stroke? What happened?
Natalie Mazer 2:36
Yeah, so actually, the reason I wanted to be on the podcast is because I guess maybe there’s a message that I learned through the stroke. And I wanted to share it, and listening to the podcasts from other people, has really helped me a lot a little over two year journey.
Natalie Mazer 2:59
So I had a stroke in August 2020. So really, kind of in the middle of the pandemic. So it was a pretty tough time to have a stroke. There was some, you know, I guess a lot of pressure, I have three kids so like having three young kids at home, and also, I had a very kind of intense work and intense career and so did my husband.
Natalie Mazer 3:31
So it was a lot to juggle. And also during the pandemic, you really, I think a lot of families with young kids were a little bit in the pressure cooker, right? Because a lot of the things that we used to outsource, it wasn’t available anymore. It really put a lot on the families.
Bill Gasiamis 3:49
Like schooling, like childcare, perhaps.
Natalie Mazer 3:58
And we were lucky to have childcare and actually even partially in person school. But still, it’s just like, because also like, I think when everyone’s working from home, like your team is going through a lot too, right? And you need to be there for them too, so it’s just a lot.
Natalie Mazer 4:16
But but basically the way it happened is I had trouble sleeping for a few nights before that. And also I’ve always had migraines. Since probably like my mid 20s. And I you know at one point, I’ve even like experienced fatigue, especially when it came to kind of like my late 20s, or early 30s. And I’d go to the GP and I don’t know how you were but for me, when you know when I was younger and before the kids I took care of my health a lot when I had my kids I still thought it was healthy like in terms of trying to eat and you know, exercise whenever I can.
Natalie Mazer 4:53
But, you know, all the checkups were really focused on the kids and that necessarily myself but I But at one point, I did experience quite a bit of fatigue and the migraines and I would go to the GP and talk about it. And she’s like, well, it’s got a career and three kids, it’s normal.
Natalie Mazer had an Atrial Septal DefectNatalie Mazer 5:09
So, but later on, of course, I found that it wasn’t normal, I should have really been sent to a cardiologist, because what I was living with was a congenital heart defect, which is an atrial septal defect and ASD, and mine was about an inch in diameter.
Bill Gasiamis 5:29
Okay, so was it a hole in the heart? Or was it a malformed blood vessel? What was it?
Natalie Mazer 5:36
It was a hole in the heart?
Bill Gasiamis 5:39
An inch in diameter?
Natalie Mazer 5:43
Yeah. So actually, as crazy as it is, every single cardiologist said, we’re really surprised you didn’t have it earlier. Like, how did you have three kids? By but to a certain extent, it’s I think, what helps me a lot. And I think I’ve gone through kind of a lot of trauma before that, which of course, I didn’t even consider trauma until I had to deal with with the stroke recovery.
Bill Gasiamis 6:12
Personal trauma in how it impacts your health, your heart, your emotional well being your physical well being.
Natalie Mazer 6:22
Totally. But gosh, and I lost my train of thought a little bit. But maybe should I go through like how the stroke happened?
Bill Gasiamis 6:29
Yeah. So that’s alright I’ll take you back. So basically, what you’re telling us is, you’re a busy mom, you’ve three kids, you have a career, your husband is in the same situation. The house is crazy busy. I imagine that based on what you said, there’s not a lot of “me time” it’s all about everybody else.
Bill Gasiamis 6:51
And you’re doing the best you can to get over the condition of the migraines and the fatigue and all that kind of thing by going to the doctors by trying to get some advice. But that’s kind of where things fall over, in my opinion, and not that you can blame your GP about the supposed misdiagnosis which is not even fair to say that, but it’s just simply that most people your age, at the time, fit the criteria of being constantly tired, haven’t slept enough, not take care of myself, all the usual things.
Bill Gasiamis 7:28
And you’re, “too young” for somebody to go, they’ve got a heart condition, you know, they probably haven’t got a heart condition. And we should just err on the side of caution is not really the thing that comes into somebody’s mind, very rarely does the GP have the facility, the funds, the resources to say, Okay, you feel like this, let’s get you every single test you’ve ever imagined.
Bill Gasiamis 7:53
They don’t have that available to them doesn’t matter where you live. And it’s something that you have to put up with a deal with. So you don’t sound too different to anybody else who I’ve have had on the podcast who thought they were healthy, thought they were doing the right things, but were going through just that really chronic part of crazy life early on when you decide to have three kids and do all the things that we’re supposed to do. So, at some point, you started to develop more serious symptoms, by the sound of it is that kind of how it happened?
Natalie Mazer 8:34
I think it was like maybe I just dismissed the migraines, right? Because I also was, like, during my pregnancies, I was actually very severely vitamin deficient. So they always give me lots of vitamins. And I was like, Okay, I guess it’s just, you know, just the way I am and maybe it has something to do also so I was I was actually born in the Soviet Union.
Natalie Mazer 8:55
So it could be that maybe if I was born in this country, I would have had the heart surgery done, you know, at a young age. So I think could be that wrinkle potentially could have been there as well. So yeah, but I think it was more like I was just feeling I thought I was feeling just the regular fatigue of you know, to be honest, the pandemic and like the migraines would come and go and I was like, Okay, at this point, like, I know if I even have any one of my migraines it’s, you know, my husband’s on duty for for bedtime with the kids, right.
Natalie Mazer leading up to the strokeNatalie Mazer 9:28
So we kind of worked around it. But of leading up to the stroke, I did have a kind of really restless nights sleeping, which I noticed a quite a few people mentioned on the podcast. And then so I had I went through like kind of power through the day of of meetings. And I remember the my last few meetings of the day, I was like, Oh my gosh, like, you know, like you’re just like trying so hard just to power through it.
Natalie Mazer 9:57
And I was like, Okay, I’m gonna make dinner for the kids pack them in thermoses, and we’re gonna go for a walk, we all need to get out of the house, we need to get exercise. You know, that’s kind of how we dealt with the pandemic, we would just literally pack dinner and go for walks in the evening after both of our workdays are over.
Natalie Mazer 10:14
And as I’m packing the thermoses I’m like, something’s off, like, you know, like, I feel like I’m in slow mo. And then I was like, I almost felt like I was observing myself not actually being me. And then I started seeing, you know, double hands. I was like, wow, I four hands this is really cool.
Natalie Mazer 10:39
And then eventually, I was like, okay, I think I need somebody to help me, you know, I think I need some help. And, and to be honest, like, in my mind, it probably was just like, you know, like, you kind of lose track of time. So like, you know, how we get in bed and you’re in the hospital, they quiz you like, well, how long was this? And how long was that? And I was just like, thinking to myself, I’m like, why are they even asking me these questions? It’s like, I definitely like do not have the right sense of time.
Natalie Mazer 11:12
And so eventually, I thought, I called out to my daughter who was in her room, but she said she didn’t hear me. So eventually, like I kind of walked myself down the counter and I opened the door because I knew my husband was outside with the kids. And I thought I said help. But you know, to my husband, it was something like very ineligible, because I also had trouble speaking.
Bill Gasiamis 11:37
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Bill Gasiamis 11:50
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Bill Gasiamis 12:09
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Bill Gasiamis 12:37
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Bill Gasiamis 13:01
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Bill Gasiamis 13:30
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Natalie Mazer 13:53
And of course he’s like, Oh my gosh, something’s wrong. So he like rushed to get me and like he says I basically just collapsed into his arms and he lowered me down to the floor. And then I was just thinking of like, in my head. I was thinking I’m just like overly exhausted. I just like really I just need to sleep this off.
Natalie Mazer 14:15
And so he was also thinking he’s like, Oh my gosh, like I need to call 911 but he was like, well, maybe let me give her some water to drink. He gives me water, I can’t swallow. Like he tries to give me a straw. So yeah, so he called 911 luckily, they were here like we had everyone the fire department, the police department, the EMTs everyone was here very quickly, which is quite amazing.
Natalie Mazer 14:42
And actually, but the weird part is it wasn’t scary. Like this whole experience was not scary in the moment. And all I just remember thinking of like, wow, like everything’s just so calm and peaceful and like the time just slowed down and it’s kind of nice.
Natalie Mazer 15:00
And also I remember my little guy who was at the time, he was probably about like, two and a half or so. I remember my youngest son, and he just came over and he held my hand. And that was, gosh, it was the sweetest thing.
Natalie Mazer 15:22
And I have to say that got me through, like just visualizing that event like really got me through all the testing all the MRIs and everything, I would just every time I would feel like, so overwhelmed by the loud machine, I would just think of my little son holding my hand.
Bill Gasiamis 15:40
Amazing, so let me just let me just sort of step back a little bit here. So you’ve got to the point where you realize there was you needed help with something. But you’re also feeling calm, and it was relaxing, because I know that feeling as well, because everyone else is running around me like, well, like, things are seriously bad. And they were for them.
Bill Gasiamis 16:08
But I didn’t feel like they were seriously bad for me either. I’m just going through the motions, and especially my second bleed. I collapsed at the hospital. And I don’t remember anything that happened after I got there. And for me, I was just really non-concerning.
Bill Gasiamis 16:32
There was nothing happening that I needed to be concerned about. At that moment, all the concerning stuff happened beforehand. It happened before I got to the hospital. So I think I’m having another bleed, get ready to take me to the hospital, nausea, vomiting, all that stuff.
Bill Gasiamis 16:48
But then after that phase, when I lost consciousness, and I was just about to lose consciousness, and even after when I woke up, I don’t know how long it was after I woke up. Just still felt really, while you’re in hospital. It’s like wow, okay wow, that’s alright.
Bill Gasiamis 17:06
I felt quite rested, I felt quite I’m not clear in my head, but I felt quite just not sure how to describe it either. It’s like a strange calm, like a really bizarre calm that you very rarely experienced in life. Well, and I think what it was actually is my brain had switched off. And there was no thoughts. There was no processing, there was no concerns, There was no nothing. It was just no brain function. Does that sound familiar?
Natalie Mazer 17:43
I don’t know about no brain function, I think to me, it was more of like, as if it was a third person watching myself go through this. So it was like, I was almost like curious, right? Of how things are gonna unfold, but I was convinced that all I needed was just some sleep, and I’m gonna be fine. Yeah, I just thought I was like, Oh my gosh, I’ve just been overworking myself. I just need to rest a little.
Bill Gasiamis 18:10
And you went to hospital? How long were you in hospital? And at what stage? Did they discover the hole in the heart?
Natalie Mazer 18:18
Yeah. So they wanted to keep me longer. Like, because this was COVID time, right? So like, I couldn’t see my kids like no visitors, the nurses were so sweet. They actually snuck my husband in a few times, which is really, really nice. But, like I begged them, I said, can you just like send me home for a little bit because like so they wanted to keep me there for a week or longer.
Natalie Mazer 18:46
But what they agreed to is they released me over, I think, Gosh, I think they released me after, like four days or so. And then they had me come back again because they had to put me out and do like a T which is basically like, they lower like this little camera inside to take basically better pictures of the heart and they had to do more testing. So they kind of like let me go for the weekend. And then they had me come back again.
What caused the stroke?Bill Gasiamis 19:19
Did they scan your head did they realize you had had a stroke?
Natalie Mazer 19:23
So this was a very interesting experience. So like in the in the ICU, I remember like even the EMTs they were like, saying yes, she had a stroke like to my husband before they even took me and that’s why they contacted the basically the intensive care unit so they would be prepared for the ambulance to like, just rush me right through.
Natalie Mazer 19:45
Of course in my mind, I was just like, at that time I feel like that wasn’t registering like I could hear them talking but I was just like, I was just like yeah, oh my gosh, let me just get through like whatever I need to get through and then come home, get my sleep you know?
Natalie Mazer 20:03
And the attending doctor, she was very thorough and she’s like, she got me through all the tests, she got the fluids going, like whatever she basically said they were administering medication as if I’ve had a stroke. And then they did the CAT scans and MRI.
Natalie Mazer 20:20
And that’s when they actually saw it. So it was a stroke basically caused by a blood clot in my right parietal lobe. And, interestingly enough, my attending neurologist was so freaked out because the whole entire time she’s like, I just want to make sure you didn’t have a stroke.
Natalie Mazer 20:42
Maybe since you said you have a history of migraines. Maybe this was just an aura incident. And, when she found that it was a stroke, she was so freaked out, like I could tell that she was like, she felt uncomfortable just coming to see me, which was like, I have to say that was a little bit of a like, I wish it wasn’t that way.
Natalie Mazer 21:06
Like, I wish I was thinking more seriously. And this situation was taken more seriously. But you know, when they look at my kind of vitals and my age, and everything else, they’re like, You’re too young, you’re too like, you shouldn’t be having this.
Natalie Mazer 21:20
And I think because of that, I don’t think I kind of got the proper neurological examination right then and there. And, you know, she kinda like when they found the hole. Gosh, that was probably like day two or so that they found it. Or three, I can’t remember or three, maybe. I just felt like I just got moved down the cardiology track.
Natalie Mazer 21:45
And, it was really interesting, because I think to me, the acceptance of having a stroke actually came pretty quickly. Like it was literally like, right there in the hospital was like, Okay, well, I’m alive. And of course, I was like, trying not to think of the risks of having a repeated stroke.
Natalie Mazer 22:07
And I was thinking was a cool, whatever, like, I’ll get through it. I’ve gotten through lots of hard things in life, this is going to be okay. I think what really though, brought me down to my knees was at the time, of course in the hospital, then I realized that the stroke was it much more difficult to recover from? Was that when my cardiologist did the initial examination, even the initial examination, she said, Well, you might need open heart surgery.
Natalie Mazer 22:34
And I was like, Oh my gosh, because not only that, they find the hole. They also believed that maybe they found this like fibroelastoma, which is kind of like a growth on my mitral valve. And they said, Look, if we close the hole, and the growth is on the mitral valve, you could still get like it’s going directly into your brain again.
Natalie Mazer 23:00
So I think that was probably like, I felt like the minute I was like, Okay, fine, I had a stroke, I’m alive. I’m so lucky. And I’m so grateful. And then like getting hit with that. And also I ended up having an allergic reaction to Lipitor, which is something they administer to you when you have a stroke, regardless of whether you have high cholesterol or not.
Bill Gasiamis 23:27
Chaotic by the sound of things, which describes stroke anyway, like it’s, yeah, it’s what you hear it’s chaos, always. People that are just trying to make the right decisions. Doctors are under stress, because of COVID. They’re probably overworked.
Bill Gasiamis 23:48
In their mind, they have a hypothesis of what happened to you. So they’re running with that hypothesis first. And then they feel bad. And then they misdiagnosed you perhaps. And it’s really I mean, they’re just as human is you and they’ve probably got three kids, and they probably overworked and you know, a whole bunch of things and as much as we want to blame people as much as sometimes we do, we get to the point where it’s like, wow, okay, let’s see if we can start again and just go again and resolve the issue that we found and move on.
Bill Gasiamis 24:38
But that’s the complicated part about people who have a stroke, that the cause is somewhere else. That’s the thing I’ve known people who’ve had brain hemorrhages that were caused by a blood vessel in the head but when they were discovered by the doctors or by the paramedics, the heart had stopped.
Bill Gasiamis 25:06
So they would restart the person’s heart. And then they’d be causing more damage in the head. And then the person would crash again. And then the heart would stop. So they were thinking it was the heart, but it was clearly the head, but by the time you work it all out, you know, how do you get to that point of knowing all the details that you need to know about for that person immediately went when the cause of the stroke is from another location.
Bill Gasiamis 25:33
And it’s not unfair to treat a heart condition when there is a heart condition ,there’s opposition there, you know, so, and COVID, they were really motivated to get people out of hospitals. I know, in Australia, they did everything they could not to keep anyone for any other condition in the hospital if it was possible. And a lot of people were sent home when they wouldn’t have normally been sent home, they would have more time to manage them.
Natalie Mazer 26:03
But like, to be honest, I just wanted to go home, right, I think I just wanted to kind of see my kids. But yeah, I agree with you, I think they logically did the right thing, because they said, Oh my gosh, and they kept talking about it. They said since you’re young, we need to do everything possible to prevent another right so I think that’s why they just focused so much on Hey, we got to fix your heart. Right? Then, of course, I was on blood thinners and all this other appropriate medication, right.
Bill Gasiamis 26:37
And the one inch hole in your heart, that they discovered a one inch hole. They’re going you know, they could probably drive a truck through this thing. We need to stop that from happening, you know?
Professionals who really care about helping peopleNatalie Mazer 26:49
Speaking of that later on, so of course, like the hospital cardiologists were not the same, because our local hospital. So it wasn’t the same as the, you know, the surgeons, we have to kind of find a surgeon after that. And I have to say, I am so grateful, I’m so touched by every single cardiologist that has helped me like both the attending cardiologist and it was actually a team of moms funny enough, they were so sweet and supportive.
Natalie Mazer 27:19
They even like decided to give me anaesthesia, before rolling me into the operation room and I’m like, yes, this is so wonderful, like, you know, because you already have a lot of anxiety, like post stroke, right? And they were so loving and caring and also the cardiologist who end-up doing the surgery.
Natalie Mazer 27:40
My husband reached out to him. He had a FaceTime call with him in the evening. Like he wasn’t even working. He just said, Oh my gosh, like, let’s talk right now want to see images, and then we can worry about, like, your paperwork in my office. It’s like, I was really touched by just such an outpouring of support, like and really professionals who really care about helping people and really kinda, save a life. I think that was really touching for sure.
Bill Gasiamis 28:13
Yeah, because they can save a life, but they also can help reduce the stress and the anxiety of other people. I think that’s not… again, I’m not judging, I don’t want to judge anybody. But I think that’s not done enough. And the reason I say that is because my wife, like you, you’re thinking about your kids.
Bill Gasiamis 28:37
So even in the time when I’ve had the stroke, my wife is thinking about me, her kids that are at home, and I’ll tell you what she’s not doing is thinking about herself. So that sometimes, if there’s lack of information, or lack of contact, or lack of communication, or some kind of way of keeping her in the loop, and keeping her calm.
Bill Gasiamis 29:00
We often hear about caregivers who become unwell at the same time, that the person that they’re supposed to be caring for is unwell. And that’s the worst situation to be in. And if we can find a way to relieve the stress for the caregivers, and for the people that are left behind at home or wherever, I think it’s really important to do it if you can, and try and make the condition better so that the caregivers or the people behind at home, are less anxious if it’s at all possible, and I know it’s not always possible, but I just remember my wife collapsing a couple of times my dad collapsed.
Bill Gasiamis 29:44
My wife collapsed after my brain surgery. My dad collapsed when I was first diagnosed a couple of years earlier. And as the stroke survivor, I’m in hospital. What I need is, I need everyone else to be healthy around me for the time Being I need to be looked after and cared for. And it’s, please be healthy and well, when I need you the most, you know, so anything that we can do to support caregivers, I think it’s really important the fact that your surgeon did that is just amazing.
Bill Gasiamis 30:19
And it just goes to show you again, it’s that thing of the care, the medical care doesn’t stop after you’ve closed somebody’s chest, or you’ve stitched their head, or anything, it does continue, and they’ve got a massive job, a huge responsibility. And they do amazing things you and I wouldn’t be here if it wasn’t for the current world that we live in and the medical advancements, you know, we wouldn’t be having a podcast interview.
Natalie Mazer 30:54
Yeah, you’re absolutely right. You know, like that kind of emotional support. And, like an or just like treating you like as a as a human right. And relating to the human level. Oh, my gosh, that’s just like, I feel like they can either make you feel. And I think maybe that was my contrast, right? Like, like, in the early on, of course, now I have a very wonderful and supportive and amazing neurologist.
Natalie Mazer 31:18
But like my that remember how it was like kind of showing the contrast of like, this neurologist in the hospital, who was like, Oh, my gosh, like, I can’t believe I have to do my rounds. Like, I don’t know how to be near you, like you feel it. But I feel like actually, after the stroke, I was feel that energy stronger, right, then people and then versus, like the folks who I initially encountered on the cardiology track, and they were all just like, just lifting me up, like, in the time where and when I really needed that, right? Because it’s just like, yeah,
Bill Gasiamis 31:51
people feel people treat themselves really badly when they’ve made a mistake, they feel guilty, who knows what the reasons are. And it’s unnecessary, really, I think a mistake is something that happens, and you can just simply, and even stroke survivors do that to themselves, we all do. And a mistake is just something that you can restart from, and just go again. And it The quicker you realize it and just let it go and move on, the better.
Bill Gasiamis 32:19
The better of support and service, you can be to the other person, because you made the mistake against, for example, doctors and nurses, I look, I couldn’t be a doctor or a nurse, the shift work, you know, the, the, the time of the shift the amount of time they’re on a shift the amount of support and love and care that they’ve got to give to other people all the time.
Bill Gasiamis 32:47
And they’ve probably have kids that are doing that they’re being supportive of just like us regular folk, because imagine being somebody who has to pour out their support and care for other people all the time that they’ve never met before. And it’s a, you really need a big reserve of energy to be able to do that.
Bill Gasiamis 33:11
And you need to be able to do that all the time at work, you can never get it wrong. And imagine needing to, you’re having a bad day, and you have to be at work, and you have to do neurological diagnosis, and you got to do all these things. It just seems like they’re just seems like they’re the most amazing people in the world.
Bill Gasiamis 33:32
And they get it wrong every once in a while, you know, so grateful for the fact that we have people like that in in our communities on the planet who have decided that they’re going to make it about us and people they’ve never met before.
Natalie Mazer 33:50
It’s ridiculous. Yeah.
Thinking you’re better than you are vs actually being betterBill Gasiamis 33:53
I’m not able to have that much time and energy for other people. I’m just not. Now you’re you’re in hospital, and you’re thinking I just want to go home to the kids. I just want to go home to the kids now. I get you’re a mom and you miss your kids. But is there a disconnect there with thinking that you’re better than you are? Do you have some kind of idea that oh, my gosh.
Natalie Mazer 34:22
Um, I think I’m not sure if it was maybe I think in the hospital, I just wanted a frequent frankly, the real reason behind me wanting to go home and see my kids in the hospital is what I wanted to see them one more time.
Bill Gasiamis 34:39
Wow. Yeah, okay. Yeah, that’s, uh, in terms
Natalie Mazer 34:43
of your other question of thinking that I’m better than I I’m actually better and more capable than I am. Oh, that lasted for me for many, many months. I wasn’t Yes, I was certainly in denial with With my deficits, and I think especially and I think especially since, like my, you know, like, I guess since I was steered to the cardiology, surgical track, right, so of course, they hooked me up with a monitor, they had to give me a bunch of tests.
Natalie Mazer 35:13
Right. And it was very much prepped for surgery. Right. And I think that’s, that’s kind of like, so my whole thing is, eventually when I came home was I just slept a lot. I was just like, sleeping and sleeping and sleeping. Did I see my kids? Absolutely. But then I was also an actually, I remember the most shocking thing, like just really wanting to come out of the hospital.
Natalie Mazer 35:37
But then when they came out of the hospital, I was like, Oh, my gosh, I don’t remember the world being so bright, and so loud. And just wanting to curl up in a ball in a quiet dark place. Right? It’s because you’re just thinking, right? Sorry, overload.
Natalie Mazer 35:55
Yes, yes. And it took it took us a while, actually, I think I think, you know, within the pandemic, and everything else, like I think I was just so focused on like, addressing, you know, the heart, and we did, and then after that, I was like, Oh my gosh, because I’m, you know, I’m at home, I’m realizing that, like, even going for a walk outside, you know, as I got better over time was hard, because crickets are allowed, if everything’s too bright, like, I wear sunglasses all the time, I was just like, I couldn’t handle more than just, you know, initially just a few minutes outside, right.
Natalie Mazer 36:32
And eventually, like, I tried to go longer and longer. And and the thing is, so later on, it almost took a year actually, for me to figure out to properly be diagnosed with all my deficits.
Natalie Mazer 36:49
So I lost some, because they were mostly so actually, while my left arm was numb, right away, right, but, um, so like, from a physical, I think that’s what happened, I think they, when they were discharged from the hospital, they were looking more for, like physical deficiencies.
Natalie Mazer 37:06
And my arm was numb, and you know, my fingers kind of had a hard time moving and everything, but it actually recovered very quickly. Like, you know, from time to time, I’ll have like, my shoulder feels a little stiff, even now. But like, I didn’t think of it as a big deal. Like I was able to, you know, walk and you know, and the function are, so technically I look the same, but it’s all invisible issues that took such a long time to understand.
Natalie Mazer 37:36
So like, from a visual perspective, I lost my perception of depth, which explains why I’m sitting here like, my husband’s driving me home, and I’m like, covering my eyes up because I’m like, Oh my gosh, like, I feel like we’re about to hit everything on the road, right? Because if you don’t see the depths, everything’s kind of two dimensional, flat and right in your face, right. And also, I lost some of the periphery.
Natalie Mazer 38:03
And also, you know, very much visual and auditory overstimulation. I had vestibular issues. And also, which also took months to discover is I actually acquired sleep apnea, like central sleep apnea, which, like, especially early on, after the stroke, I would like dread going to bed every night.
Natalie Mazer 38:29
Even though it’s so tired, right, though so thoroughly wanted to do so like I would want to sleep but the same thing with dread going to bed because especially if, if it was like a very overstimulating day, like with central sleep apnea, you basically kind of like so we take little pauses as we breathe, apparently, during the night.
Natalie Mazer 38:49
But here, you kind of forget to breathe. So you wake up, and you gasping for air and you fall back asleep. And that happens repeatedly, you know, for a few hours before you’re finally like, kind of calmed down. You kind of start but to be honest, I didn’t even like think to even mentioned it to my doctors, because I was like, Oh, this must be something you know, that I just have to deal with. Like, that’s what I mean.
Natalie Mazer 39:15
Like, I think to your point, though, I would notice all these weird things. Or like, for example, when I was trying to, you know, put my kids to bed and I would just like oh, like I always would sing songs. I’ll tell them all these Nursery Rhymes and I’m like, and I started the first sentence and then I’m completely blank.
Natalie Mazer 39:33
And I’m like, Oh, boy. Or, or music, right? I actually forgot how to read the bass clef. Not the treble clef. But I guess because I learned the treble clef earlier on maybe in my life. I don’t know what it was, but it was just, but the funny part is it didn’t like that wasn’t a red flag.
Natalie Mazer 39:53
I was actually questioned like, it seems like they wrote something wrong. This music page was was kind of how I was perceiving it. Right. So yeah, I think a lot of these invisible issues are really hard to identify for yourself like you almost need Yes.
Bill Gasiamis 40:11
Yeah, it wasn’t a red flag that’s really interesting. So I went through that. So after the second blade, I came home and I couldn’t finish a sentence, I couldn’t type an email, I couldn’t remember who came to visit me, I’d start. I was, I was, I couldn’t track time how much time had passed?
Bill Gasiamis 40:32
You know, I was in, I was in this whole weird kind of out of head experience, not out of body out of head experience. It felt like, I’ve had smoked weed a few times in my life. And I felt like I was completely stoned the whole time. You know? And I would have a conversation with my wife about what I’m feeling.
Bill Gasiamis 40:52
And she would be wondering what’s happening? Because clearly, I was behaving differently. And I was skateboarding, I don’t know. And she would say, Well, I don’t. Is that normal? Is it part of the stroke? Is that? Are you having another one? Where are you? Where are we at? And I was, I don’t know.
Bill Gasiamis 41:11
And we were just kind of have to wing it, we do have to hope that it wasn’t another one. And many times we went to hospital, because we thought I was having another stroke. And it wasn’t another stroke. And it’s, it’s just a mess. And I remember that one of the first things I did after I came back home after the second hospital harbor hospital stay was I went to see my counselor.
Bill Gasiamis 41:35
And she clearly had noticed the difference in the way that I was behaving cognitively. And she said to me, have you ever heard of a neuro psychologist? And I thought, No, I’ve never heard of that. I don’t know what that is. And you said, Well, it’s somebody who will check your cognitive ability and give you an idea of if there’s any deficits there. And I thought, oh, okay, that sounds like a good idea.
Bill Gasiamis 42:01
We’ll go and send us psychologists. And maybe we can get a few more answers, because no one told me what to expect when I went home after the second blade. And I was in a pretty bad way. And then I went to make an appointment for the neuropsychologist. And again, what we didn’t realize was that I could make a private appointment if I wanted to. But we made a public appointment through the hospital public system.
Bill Gasiamis 42:28
And the waiting list was about nine months long. Oh, my gosh, I didn’t know. And we just thought, okay, yeah, we’ll take that one, no problem. So I struggled with the deficits for about three or four or five months. And it’s, they started to get better as time went on, but we just kind of put up with it. And I put up with it, and my wife put up with it. And we just didn’t know how to deal with it. And we were looking for help. And we didn’t know how to ask for help about it.
Bill Gasiamis 43:05
That’s the other weird part. I didn’t know the question to ask my neurologist, or any of the doctors to say, What do I do about this thing? Where I feel stoned all the time? Or? How do I even describe that to a doctor? And what do I say? So we didn’t even have the words we didn’t have that converse, that ability to make the sentence to express our concerns.
Bill Gasiamis 43:32
Because we’re dealing with neurological terms, we’re dealing with a weird Brain and my wife is not inside my body. She’s outside of me. And she’s observing me, she knows I’ve had a stroke. So there are certain things that are kind of acceptable, when we can accept that bill’s had a stroke, and he’s behaving differently or speaking differently.
Bill Gasiamis 43:52
We kind of understand that part. But then what what do we do about it? So that’s the important thing is kind of the caregivers who are listening. And perhaps even the stroke survivors who are listening, need to be able to kind of find a way to get the message across. I’m struggling with something with this with that, who else can help me that’s why I have the download from my website, seven questions to ask a doctor about your stroke.
Natalie Mazer 44:19
I read those I read I have to say, I’m, I think I might have learned about on your psychologist from your podcast or from your website. Yeah. Is. Yeah. And I and I also, like, I think what was really inspiring about your podcast for me, it still is, is the fact that you always emphasize on, like, you have to really kind of own your recovery.
Natalie Mazer 44:43
Right. And it’s and frankly, I would even add not be afraid to own your recovery because, for me, I’ve always like I think what didn’t help was I’m just like, oh, you know, I can take life, you know, head on, like I’ve been in difficult situations in the faster and, and I’ve dealt with them.
Natalie Mazer 45:03
And you know, when I’ve experienced loss like losing a loved one and things like that, and with that you just like you kind of surrendered to the situation you accept it, of course, it but you can do something about like, I’ve always felt like everything I could always do something about like I could say, Okay, well, you know, instead of being really sad, and you know, maybe, of course you go through the sadness and the grief.
Natalie Mazer 45:27
But like, you can also turn it into something more positive to maybe help others or kind of celebrate that person’s life or things like that, like so you could actually do something about it. I think what was different here is that I didn’t know what to do. And I didn’t know what was it, like so to me, I was like, well, I’ll just buckle in, you know, pretend everything’s good. And pull out the room.
Natalie Mazer 45:53
But like, didn’t work. And I was just like, because I actually went back to work, I go to virtual workers were still the pandemic. So I went back to virtual work. And my gosh, that was really humbling. And of course, I, you know, put my smile on and I was just like, Okay, I’m just gonna put on the performance.
Natalie Mazer 46:11
Because, you know, to a certain extent, you also, you know, my career was always very important to me, it was very passionate what I was doing, and, and frankly, like, I could only still tolerate very limited amount of time with my children, right? Because of all that audiovisual vision.
Natalie Mazer 46:30
Yeah, and here, I’m thinking, well, actually work sounds like a great thing to make me feel like I’m, you know, my life, I’m snapping back. I think in our culture, we also really celebrate this quick turnaround story and quick success story. And everyone’s well and, you know, happily ever after.
What Natalie Mazer was thinking when she had a strokeNatalie Mazer 46:46
And, I think that was really no thinking of like, well, also, like, I don’t know how this is going to offset my family dynamics, my kids my this, right? So it was like, I gotta become productive for the family. And I gotta snap into it. Even though like now thinking about it an old life therapists. They were like, what were you thinking? Like, how were you even possibly functioning? You know, at work? And of course,
Bill Gasiamis 47:13
thinking, of course, you’re not thinking of course, you’re not functioning, of course, you’re just putting on a brave face. And you seem like a smiley, happy go lucky person, usually. So everyone is expecting that Natalie to come home, that Natalie to come to work. And when you do, the fact that the fact that you said and you look, the way that you look, the fact that you said you had a stroke means nothing to these people.
Bill Gasiamis 47:40
They don’t know what a stroke is. They don’t understand that it’s Hang on a second, Natalie had a stroke. She it’s not a broken heart surgery. She’s not, it’s not a broken leg. It’s not six weeks, and you’ll be back to work. It is a very long time. It’s a big recovery. And we are as stroke survivors at the beginning, we’re just as ignorant we just as ignorant we don’t know. Right?
Bill Gasiamis 48:05
So yeah, I and I feel like you have a lot of energy to give anyway, you’re, you seem very energetic, even. Just like your the way that you express yourself is very bright, bubbly, and energetic, right. So putting on your personality, just your normal Personality gives people a false sense of the situation and what happened and what it’s like, you know,
Natalie Mazer 48:34
one colleague who said what if your back though, and I was just like, I was like, just play down? And I was like, yeah, like, I played it down, like, yeah, like, I’m back, like, I’m gonna get through this. And, of course, first meeting of the day, I, I, you sit in the meeting, you know, kind of welcome back.
Natalie Mazer 48:53
And then you know, and then the talk about a few topics. And then a little later, I had to dial into a next call. And, and actually, I asked to, like, maybe not have the camera on, right, because at the time was just like, even if I had the camera on, I would put a blank like Word document over it.
Natalie Mazer 49:11
So I wouldn’t visually overstate overstimulated. And so the second meeting, they’re referencing the previous meeting, and I’m just sitting here thinking, I don’t remember any of this happened.
Bill Gasiamis 49:25
Wow. Yeah.
Intro 49:27
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like, how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse, and doctors will explain things but obviously, you’ve never had a stroke before. You probably don’t know what questions to ask.
Intro 49:52
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. To stop worrying, and head to recoveryafterstroke.com, where you can download a guide that will help you. It’s called seven questions to ask your doctor about your stroke.
Intro 50:11
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery, head to the website. Now, recoveryafterstroke.com and download the guide, it’s free.
Bill Gasiamis 50:30
In stroke recovery, the strokes are over, there’s a race to get back to normal, quote unquote, normal. And in that race to get back to normal, a lot of things are overlooked. And people feel like if I just go back to where I was before, then everything will be okay.
Bill Gasiamis 50:49
Because this, we’re trying to convince ourselves that we’re okay and that it wasn’t as bad as it is. And perhaps we’re thinking about mortality. And we’re thinking about all the things that went wrong. And we’re thinking about all the bills and all that kind of stuff.
Bill Gasiamis 51:01
But at some point, I feel like you discovered that you were going about things the wrong way. So when you discovered that, how did things change for you? How did you then approach your stroke recovery? How did you do things differently?
Natalie Mazer 51:19
Oh, gosh, I went back, I went back on medical leave eventually. Right. I think, I think initially, I really tried hard to you know, I actually when that happened, by the way, in the meeting where I forgot what happened. Yeah, I just got a stack of notebooks. And I wrote everything.
Natalie Mazer 51:38
And I would prescript what I would say in meetings and all this terrible, like crazy things, right. And it’s like, of course, I relied a lot on my long term memory. And I was such a big planner. So I already had a lot of things pre planned right before the stroke.
Natalie Mazer 51:52
So but at some point, I was just so exhausted, because I would you know, fall asleep, you know, in the chair and all sorts of things and have my migraines. And like I was completely not functional with my family, you know, as a member of the family, right? Because there’s just not much energy to go around with like, the fatigue is really bad rind. Yeah. And, and sometimes I’d have trouble speaking.
Natalie Mazer 52:21
So even when I wanted to say something in the meeting, I just kept my mouth shut, because I was like, you know, I think at some point, right, as those things accumulate, you’ll realize that and of course, then I went I went back to the attendee neurologist, and she said, well, well, for one would need like speech therapy, and that’s twice a week, and I’m just thinking to myself, I’m like, Oh, my gosh, I just came back, like how, like, there’s no way that my job would allow me to take two days to go through speech. So I kind of dropped that.
Natalie Mazer 52:57
I was like, Yeah, I’ll keep my notebook. You know, I’ll keep my notebook thing going. And, you know, it’s just like, a so it’s amazing that you just, you know, cuz I was thinking, I was like, well, maybe eventually, we’ll all just resolve itself, right? Because I don’t think we want to think about it that way.
Natalie Mazer 53:15
But I think eventually, you know, you’re listening to your podcast, and also trying to do some Google searches. And actually even simple things like I would even like Google, like, how do you parent after stroke, right?
Bill Gasiamis 53:28
Wow, find thing.
Natalie Mazer 53:30
It’s like, it’s true. Like, I remember having a moment I’m just such a different parent right now than they used to be. Because I had a lot of energy like, I think you mentioned like I just used to have a lot of energy where I could be very high functioning at work and I could still be very high functioning at home and get everybody ready and out the door for school and things like that.
Natalie Mazer 53:51
And here I am. I’m like, we started with my husband with like, Well, how about we have a goal of you, but this is after I of course, I went back on leave the second time. They like one of our my goals was I get kids ready and out the door for school. Like not drive them yet, but because right I couldn’t even be a passenger on the highway in the car. Yeah. So I got them ready for school once a week, right? That was my my goal.
Natalie Mazer 54:21
And I remember just trying to coerce them and guide them to the door. And of course, they’re all chit chatting at the same time. And I’m just overwhelmed. And I remember just just kind of sitting down on the floor and bawling by the door. And it looks like all my kids ran running towards me like money. Are you okay? Are you okay? Like, what can we do? And that, to me was an epiphany.
Natalie Mazer 54:46
I was like, wow, like my old ways are never gonna work. Like, the new way is really how can we position it? Like we’re a team. I’m one of you guys. We all got to look after one another. And it’s done such a humongous transformation in the positive direction actually, with my children and just like, they actually listen to me now like
Bill Gasiamis 55:18
Right, okay, really isn’t that amazing? So, so you’ve stopped becoming the person who does everything, and you’re recruiting people to do their own things for themselves. So that, and at the same time, you’re giving them the opportunity to learn how to be independent, and also not dependent only on mum for everything. Yeah, yeah. That’s brilliant. That’s an amazing outcome come from desperation.
Bill Gasiamis 55:52
And it came from this terrible situation where you’re balling on the ground, but that’s kind of that’s like, you might not describe it like this. And it’s okay, if I’m not describing in exactly the same way. But what I’m trying to demonstrate is like, that’s almost a rock bottom moment.
Bill Gasiamis 56:07
And then from rock bottom, there’s no further to go, you have to change and you have to not, I can’t go back to being the way that I was before because it doesn’t work. And I’m going to end up being unwell for longer. And without me here, there’s no point not being here. So I’ve got to change my ways. And what an what an amazing lesson to get from such a potentially terrible situation, right?
Natalie Mazer 56:35
Well, with the work I also I feel like I went to my rock bottom. Before I decided to go on leave the second time, right then, and actually go and, and get actually, so they took me through this really intense evaluation. And the person who was doing the evaluation, she said, Okay, well, you have processing issues, you have short term memory issues.
Natalie Mazer 56:58
And she says, I also think you have visual issues you should go see on your ophthalmologist, and you will probably need visual therapy too. And then she said, and I would also highly advise on neuro psych evaluation. And I was like, Oh, interesting. And I have to say, then, when I remember just Just hearing that, just oh my gosh, was it? So relieving?
Natalie Mazer 57:21
I was like, Oh my gosh, I’m not crazy. Because, like, so because we also recently moved before the stroke. So I didn’t even have a GP. And then eventually, like every GP I’d meet, and you know, when I say, Hey, I’m looking for GP because I recently just had a stroke and all this other stuff. They didn’t know what to say. And this one GP, she said, Oh my gosh, I actually have another young patient who had a stroke. So she said, I understand you. But she thought like a lot of my symptoms were PTSD, not actual physical deficits.
Bill Gasiamis 57:53
Stroke related deficits.
Stroke saved my lifeNatalie Mazer 57:55
So of course, so it’s kind of interesting. I feel like in my journey, I almost went from like, physically repairing oh, by the way, actually, also stroke really saved my life, because of that large hole in my heart, but the cardiologist said that my one of my sides of my heart was already enlarged.
Natalie Mazer 58:13
So that could have only lasted a few more years. And that’s about it. Right? So, um, so I kind of went from like, physically repairing my heart to kind of start healing my heart. Then eventually, like, you know, because my GP initially said before I went to the neurologist the second time, she said, Well, maybe the some of this is PTSD. So I actually started therapy.
Natalie Mazer 58:39
And then it’s, I would have to say, I’m very grateful to my therapist, because I feel like it’s my therapist who kind of made me realize that I really need to, you know, really get it evaluated properly. And media, you know, should focus on my health, but not try to pretend nothing’s wrong and keep the wheels, you know, moving.
Natalie Mazer 59:02
So then I was, and I know, in the podcast, you talk a lot about the importance of mental health, and I couldn’t emphasize it more. It’s just like, it’s just like, we shelf so much things down our entire lives. But I think when we have to, when we, you know, end up having a severe trauma in order for us to move forward, even physical recovery, we got to process it all and it’s Yeah, yeah.
Bill Gasiamis 59:31
It’s a big, so people you hear about a lot of people who, who go into therapy, people who I’ve coached, who will say stuff like I it’s, I’ve had this massive burden on my shoulders, you know, and it’s like, okay, I have this massive weight on my shoulders. Okay. So even, even if it’s metaphorical.
Bill Gasiamis 59:57
How is that going to support Walking again, if you’re learning how to walk again, because you’re gonna have strict deficits, and you have a massive weight on your shoulders, metaphorically, it’s going to be harder to walk, just simply.
Bill Gasiamis 1:00:12
And when you hear people shift that and when you get when they get through that feeling of having a massive weight on the shoulders, oh, my gosh, I felt like the load has lifted or shifted, well, then they’re going to be lighter on their feet. It’s just a logical thing, and it’s going to support the recovery.
Bill Gasiamis 1:00:32
So that’s why I emphasize mental health recovery. That’s why I emphasize the emotional recovery. And the physical recovery has to be done together, maybe not exactly the same time. And with exactly the same amount of effort on all of them, maybe at the beginning of the physical recovery gets the most effort.
Bill Gasiamis 1:00:52
And then maybe slowly as the physical recoveries, getting to a point where we’re seeing changes or things are improving somewhat, or you’re moving forward, maybe you can shift to the emotional recovery and start giving that some effort and some time. And then same with the mental recovery.
Bill Gasiamis 1:01:12
And keep shifting the amount of time and effort you put on each one just to suit the needs that you have at that time, in at that moment in time. And then continue on with whatever you need. But keep cycling through them all mental rent, mental recovery, emotional recovery, physical recovery, I’m coaching a gentleman now who’s recovering from stroke, his missing half of his skull, because he had a brain hemorrhage and the the brain was swelling.
Bill Gasiamis 1:01:43
So they wanted to remove the skull to let it swell. And then to once it’s settled down, they put they’ll put the brain, the skull back in. And of course, there’s a whole bunch of fear around his condition, the fact that he’s missing half of his skull, etc. And he’s missing out on being outdoors. He was He loved the outdoors.
Bill Gasiamis 1:02:04
And anosike. He’s so angry, and he’s so upset that he can’t go outdoors. Well, that’s what they think they can’t that he couldn’t do. So the homework after that particular coaching session was find the location where you’d love to go and see if that’s a wheelchair accessible. And then do a little bit of homework to work out how you’re going to get there. how long you’re going to stay there, how you’re going to attend that particular area, that beachside area.
Bill Gasiamis 1:02:36
And then how, how long you want to be there for and how long you’re going to take to get home, and what you have to do to get home safely, etc. So prepare some drink, learn where the toilet is going to do all the things that you need to do so you can get out there. So that I know he’s having his emotional recovery, I know that without that, he’s going to be at home for an additional day thinking that nothing is possible anymore.
Bill Gasiamis 1:03:03
So even though he’s doing rehab, even though he’s doing all these amazing things, they weren’t certain about whether or not they could get out and about. So contact your doctors, contact your local taxi service, see if they’ve got a wheelchair taxi or something like that, you know, whatever you have to do.
Bill Gasiamis 1:03:22
And that small thing attends to a really big need in the heart, in the emotional center, to feel like you’re back in your space in your world where you love things where you enjoy things where you get happiness, where the dopamine starts to fire off with a serotonin starts to fire off.
Bill Gasiamis 1:03:42
And we’re all the feel good hormones and chemicals start to fire off again, they help the brain recover. So that’s why you can’t go into stroke recovery with a heavy burden on my shoulder. Maybe you can start the recovery with the burden unshod or the heavyweight and shoulder.
Bill Gasiamis 1:03:58
But at some point, to make your recovery move further, you have to remove the heavyweight. And you’ve got to go to counseling. And you’ve got to speak to people that help. And your husband and your wife and your kids are not the people to go to because they are not equipped to deal with all the shit that they have to deal with.
Bill Gasiamis 1:04:20
As well as your stroke and as well as your emotional problems. They’re just not equipped. You have to seek help from other people.
Natalie Mazer 1:04:27
They’re already carrying double the load, right? Because you’re out of commission.
Bill Gasiamis 1:04:32
Exactly. You know, and they’re there for you, of course, when you’re having a tough day and you can say, Yes, I’m feeling terrible, like darling, I’m stuffed, I can’t do anything. Oh my god, you can cry in their arms, you can do all those things. That’s you have to kind of also wrap it up for them and leave them the opportunity to have their own space and their own emotional recovery and their own and their own mental recovery.
Bill Gasiamis 1:04:57
They’re thinking about your potential loss, and the thinking about your deficits and all your challenges. And they’re trying to pretend that everything’s okay. So that you can feel okay. But we’re all? Well, that’s why I keep saying we all have to take responsibility for our own recovery, you can’t, you can’t expect. You can’t expect to go through something as traumatic as heart surgery and stroke surgery.
Bill Gasiamis 1:05:26
And think that everything’s going to be okay, you will only work for a short amount of time. And then, and then you have to do, you have to evolve. And I feel like that’s what happens to a lot of stroke survivors. The podcast is, there was a really tough time, there was, we came back and things started to change and move and shift.
Bill Gasiamis 1:05:48
And then if you give, if you have the opportunity to speak to somebody who’s 10 years post stroke, as opposed to somebody who’s only one or two years post stroke on the podcast, I ended up finding out how things have really moved on 10 years post stroke, and the acute phase might last for 234 years.
Bill Gasiamis 1:06:12
And then, and then there’s a shift that happens, and then in the new body, that they coexist, in, that they exist in life, continues to move forward. And they continue to get back into some kind of a routine, some kind of a way of solving problems in a unique way, some kind of way of being part of the community, getting fulfillment, but it all comes. But it doesn’t come by being passive. You can’t just sit around and wait for it to happen to you, you know.
Natalie Mazer 1:06:48
Yeah, but I think I know, one of the messages that I was hoping to share, too, I guess, based on my experience, like would the person who is always so hard on herself, right, and always feels like, like, I can, you know, I can get through anything like and let me just kind of shove it all down, and then they will all you know, get better. All right, because because I feel like it worked to me in certain things, right.
Natalie Mazer 1:07:13
And it’s and I think, interestingly enough, you know, how people say, they get advice from kind of their older self to the younger self. For me, it was the total opposite. As I was going through the bookshelf, I found a notebook from the time when I was in my 20s. And I was writing some poetry.
Natalie Mazer 1:07:30
And I read this poem, and it was like, it touched me so deeply, because it was all about surrender. And what I realized that was, you know, I might have not have a hard times surrendering to circumstances, but I couldn’t surrender to myself. Like, I think that’s the battle, the internal battle that I was happening was happening.
Natalie Mazer 1:07:53
And, of course, I learned pretty early on that comparing the before and after is just like, oh, sure way to get to depression. But, you know, and I was like, Okay, I feel like I’m not comparing before and after, but still, I could not really surrender to the new me, right. And there was an frankly, like, part of me was even kind of, like, sometimes I’d mentioned what I was going through. And then of course, people don’t always know what to say.
Natalie Mazer 1:08:20
So it gets a little awkward. And then other times it just like, you know, you kind of put your face on and pretend nothing happened and you’re just, you know, happy go lucky, right? But that doesn’t work either. And it’s like, really kind of surrendering into myself and, and, and kind of learning to love the new me because I think we’re so focused on like, I was so focused on fixing, getting back to normal, like, the old, the old life, like kind of trying to fit into my old life.
Natalie Mazer 1:08:52
But I like I don’t know, at least in my, from my perspective, there’s probably no old life like there’s in and I was trying to, like constantly thinking to myself, like, you know, I’m always like, okay, difficult situations, there must be a lesson like, what’s my lesson? And I think my lessons were definitely to be vulnerable, for example, like my old self would have never gotten on the podcast and talked about a medical issue or a difficult experience.
Natalie Mazer 1:09:19
I’ve gone through like, No way. That’s something that only I knew and my husband and that’s about it, like, potentially even like my relatives that know about it, right. And like so like doing something as vulnerable as opening up is just something that I realized that that’s one thing I need to start embracing more and, and being vulnerable, and how actually really good things come out.
Natalie Mazer 1:09:44
So that was my lesson number one and my lesson number two, I feel like was also took me a while to figure out it’s really kind of really surrendering to oneself and, and learning to love and embrace. The new you Right? And, and it’s not easy to do it actually, I think I attributed to a lot of meditation and funny enough.
Natalie Mazer 1:10:09
So I’ve always done yoga but more as exercise. But meditation, I always knew I had to do it. And Bill like, no matter how much I tried, I just like I’m sitting there shore, like I’m pretending I’m meditating like no, my mind. Yeah, but I actually started with literally one minute timer and I tried to like, Okay, let me just try to get through one minute and then increase it more.
Natalie Mazer 1:10:34
And now I like I can get through the day without meditation, because I really need that to really calm my, you know, neurological system. And it’s like, and I think when you meditate, you start, you know, you there’s like, you just opening that time for reflection. And I think, like, so my, my big takeaway is like, it’s okay to like, give yourself permission to not be okay, and give yourself permission to, to even like, figure out who is this new person?
Natalie Mazer 1:11:03
Like, what are your like, what are your capabilities like, and don’t compare? Don’t judge yourself like, and also, like, I think what helped me is trying picking something up to do that maybe I’ve done as a child, but I haven’t done in my adult life. Because, because it’s because it’s just so soul wrenching when you start to do something that you’re really good at in your adult life. And now you’re like, oh, my gosh, like.
Natalie Mazer 1:11:34
So actually, as like, kids, I had a couple of years of piano. And it actually is the pandemic kit. I was like, so determined to start learning the piano with my daughter. And so something that I kind of made a point that was like, Okay, well, I have, like, my baseline of like, learning the piano was so low.
Music therapy is a great tool for recoveryNatalie Mazer 1:11:53
But maybe that’s something I chip away at every day, like I just do a little bit every day. And that’s been so amazing. Because when I look back, I can that’s one thing, I can say, hey, I actually do it way better now than before the stroke. Yeah, I just think it’s like speaking of that, kind of like self motivating things, right?
Bill Gasiamis 1:12:15
Yeah. They bring you joy writes, music therapy is, has been studied, it’s a very well known thing to help people in recovery, whether you’re participating in music by singing, whether you’re playing an instrument, whether you’re, it doesn’t matter how but music therapy is a very big, positive thing to help people in recovery from trauma from any type of health condition, right.
Bill Gasiamis 1:12:44
So you’re doing that at the same time, you’re also retraining your brain, you’re using Neuroplasticity, you’re gently starting to get used to, again, the auditory stimulation, again, you’re gently starting to get the visual stimulation and the auditory stimulation happening at the same time.
Bill Gasiamis 1:13:05
So it’s like training yourself to get to a point where you’re, again, comfortable with experiencing optical and audio, stuff stimulation at the same time. And, and then physical stimulation, because your hands are moving as well, and you’re teaching somebody you know, so the whole thing is a real great recovery tool for anybody.
Bill Gasiamis 1:13:37
But for for stroke, especially because you’re activating all these different parts of the brain, you know, all at the same time, and they are supporting each other, and they are rerouting and they’re perhaps bringing back to life neurons that have gone to sleep a little bit or a little bit not working the way they used to.
Bill Gasiamis 1:13:55
So it’s a great tool with regards to meditation. So one of the things that people struggle with meditation, when they do it, they do it with the head. And they think that it has to go a certain way. And they think that When thoughts come into their head, that it’s doing it wrong, it’s not necessarily doing wrong.
Bill Gasiamis 1:14:15
The trick is to observe those thoughts and just not make any meaning about them and just let them come in. Go. Hmm, that was interesting. And let it go away. And then go back to your breath. Just check in with your breath. Okay, focus on the breath, focus on the breath.
Bill Gasiamis 1:14:30
Now, another way to kind of enhance your meditation is to put your hand on your heart. And just to ask your heart, what do I need? What’s the thing that I need the most right now?
Bill Gasiamis 1:14:44
That’s interesting, okay, or specifically, ask your heart. What do you specifically need right now, in this moment, and then just close your eyes and with the background music or whatever you use to kind of get you through a meditation job. to listen, and just see what comes up, and you’ll be amazed what comes up.
Bill Gasiamis 1:15:05
And even if it’s a guided meditation, perhaps you set a before the meditation starts, you set a little thought about what you would like to get from the meditation. And it might be I’d like to get calmness, or I’d like to get this. So you set an intention. So that the meditation has a place to kind of do its work, rather than just generally meditating.
Natalie Mazer 1:15:35
Yeah, I found actually, like, doing guided meditations was a good way for me to ease into getting into that practice, right? Because I feel like, I don’t know, it was just always so hard for me to quiet my mind, then, like, initially, I was like, started like one minute of just focusing on my breath. And after that, when I was, you know, going beyond one minute, I was like, Oh, I think I need a guided meditation, right, just so somebody to tell me what to do so that I can kind of not go off the rails basically.
Bill Gasiamis 1:16:09
So if you’re up for it, let’s do a little bit of a a test, I just want to see what comes up when I go and take you to this place. Right. So what I’d like you to do right now, if you’re up for it. Well, the first time I’ve done this on a on a podcast, is just put your hand on your heart. Okay? Right, and just close your eyes for a second. And just breathe. As you breathe, just ask your heart. What’s the most important thing for it right now? And just see what comes up. And just just let it speak to you.
Bill Gasiamis 1:17:02
And when it’s given you some information, just allow yourself have to open your eyes and just come back to the podcast interview and just tell me, if you feel like telling me what I shared?
Natalie Mazer 1:17:15
I don’t to be honest, I feel like the first thing that popped up was just calm. You know, I think? Yeah.
Bill Gasiamis 1:17:26
So one way to specifically get the mind quiet, is to specifically ask the heart for feedback. Interesting. And that immediately takes the internal voice out of your head, and it redirects it to the heart. And it gives the mind the opportunity to not respond.
Bill Gasiamis 1:17:48
Because it’s not being asked, you’re not asking your head for feedback or information. You’re asking your heart. And if you do that your gut, gut is going to give you feedback as well. If you go to your gut, and you say to it, what do you want right now, it’ll have a different voice, it’ll take longer to respond. And it’ll give you different feedback from what the heart does. And then, if you went to the head and specifically asked it, it would give you a different response as well.
Natalie Mazer 1:18:21
Wow, I’m gonna, I’m definitely gonna try that. Right.
Bill Gasiamis 1:18:27
So when you do that, that’s how meditation when that’s when you when you’re doing meditation and set an intention to, for it to be a heart full meditation. Instead of a mindful meditation, make it a heartful. Meditation, you have a completely different experience.
Natalie Mazer 1:18:49
That’s really interesting.
Bill Gasiamis 1:18:50
Just something to consider. For all those listeners out there who think they’ve by can’t meditate, and they can’t do it, and they’ve tried it and whatever. Everyone can meditate. Absolutely. It’s just a matter of whether or not you’re prepared to go to that place. And that’s the thing about the emotional recovery, you know, you need to be prepared to go to where it’s a little bit difficult.
Bill Gasiamis 1:19:15
And once you go there, it actually really lifts the suffering from that space. Because you’ve gone there, you’ve both you’ve, you’ve you’ve faced it, if it be it a fear or a pain or a previous trauma and part of going there is what makes it dissipate and not have a hold on your life so much anymore. So it has been, what three years since your stroke?
Natalie Mazer 1:19:49
About two and a half. Yeah.
Bill Gasiamis 1:19:51
So how do you see things moving forward from here? What does your daily life I found your way forward look.
Natalie Mazer 1:20:04
Yeah, so, you know, I think kind of like, similar to the sentiment I shared of, like, I’m really letting my I’m, I think I’m finally in a place where I’m being really gentle with myself and giving myself the time and the space to, to discover kind of, to really discover that new me.
Natalie Mazer 1:20:25
But, you know, for now, my goal has really been to, you know, to be to play the mom role. And of course, started I started a few interests, for example, I started painting again, and I mentioned the piano, I’ve been reading so much, I think I’ve been just really fascinated by psychology and mindfulness and, and kind of yoga and in that area.
Natalie Mazer 1:20:50
And so I’ve kind of, I feel like I’m in the state where I’m really kind of filling, you know, feeding my soul. And kind of letting for the first time ever in my life.
Natalie Mazer 1:21:03
Whereas before I liked I always, like almost always lived in the future, I had a, you know, five year plan, 10 year plan, like even in my job, like I was, you know, leading innovation, so I had to live 10 years ahead, you know, even work and that was my comfortable because I always derived comfort in being in discomfort in being in discomfort. And I feel like for the first time, I’m letting myself just heal, and kind of really naturally discover my new self.
Natalie Mazer 1:21:33
But in the meantime, I’m just kind of really working through seeing how much I can regain. And I think because I was in denial for so long, I actually hurt my progress a lot. Right. from, like, actually regaining my deficits perspective, right. So I think it’s really now focusing on unseen, how, you know, how much more I can improve. And, and also just kind of, you know, kind of, you know, loving the new me, and loving life.
Natalie Mazer 1:22:07
And I really strongly convinced that if I continue to be in on that quest for like, really feeding my soul and searching on always being open to what kind of arises, I have a feeling life will show me what my new path is and what my direction is,
Bill Gasiamis 1:22:29
I am certain of it, I am certain life is going to do that for you. The man that you meeting here today, or that is on the podcast with you now, was not this is not the same person that that was going through life at 30. Age 3748. This is not somebody who I haven’t recognized I’ve got no idea who this person is.
Bill Gasiamis 1:22:53
It’s such an amazing place to be a podcast that I coach, a leader in, in creating the tools that I was missing in the gap to fill the gaps in stroke recovery that existed. I’m I see myself in the mirror, somebody who’s writing a book about stroke being the best thing that happened.
Bill Gasiamis 1:23:21
This is not a person that I know that I recognize that would have would have come out of continuing life the way that I did it 37 Before the stroke if it wasn’t for that stuff. I would not be in these types of conversations with people coaching people from around the world to creating a community making a difference.
Bill Gasiamis 1:23:43
Like I was just so self centered, I was just about my own problems about all my own thoughts or my you know, there was none of that I wasn’t evolved at all. But and that’s why I’m certain by you just following your heart and doing what you’re saying. And taking and putting you first and doing what gives you joy and brings you joy, you’re going to bring joy to the world. You’re going to bring joy to your family, you’re going to be a great example of how to live a life.
Bill Gasiamis 1:24:13
You you’re going to inspire people beyond what you can possibly imagine. And you’re gonna look back in 10 years and you’re gonna go wow, like Is this really me because I have these moments. I pinch myself I can’t believe that I am, who I am. And the connections that I’ve made and the impact that I’m having. And it sounds like I’m bragging and I bloody am bragging you know, this was not my path and what a path I would rather this than the other path that I was on.
Bill Gasiamis 1:24:45
So I’m certain that if you’re if you put yourself first and you do it from a way of from love loving yourself and learning about yourself and being curious and open, you just described you just described the key to a successful life, if that’s such a thing, like, you know what I mean? Like, that’s that, that you know what it is, it’s a successful way of being. It’s gonna bring you immense joy and happiness.
Bill Gasiamis 1:25:25
And people around you will benefit, and you’ll be the center of love. You know, you’ll be an example of how life another way of how life can be lived, you know, and it’s a life that’s out of your head. It’s not a, a head based life, it’s a heart based heart led life and lifestyle. And then just,
Natalie Mazer 1:25:56
I love how you describe that. That sounds really wonderful. Like, I never really thought of it. That’s true, right? I think before I was very much had based strict planning, you know, always on time, you know, pre imagined every 100 scenarios and be prepared for it.
Natalie Mazer 1:26:12
And now it’s just like, just learning to just be that was a big. And you’re right, I feel like I actually, like if I think about it, I probably I feel like from a happiness point of view. Now, I feel probably closer to Carl was in my 20s. Then how it was, you know, in the last, however many years, right, yeah. Yeah, it’s, it’s very interesting, actually. Yeah.
Bill Gasiamis 1:26:46
It’s so lovely to meet you and get to know you. I really appreciate you reaching out and being on the podcast. I love hearing your story. And I wish you all the best for your recovery, your ongoing recovery.
Natalie Mazer 1:27:00
Thank you so much, Bill. It’s such a pleasure.
Bill Gasiamis 1:27:03
That’s a wrap Natalie. Wow, what an amazing conversation. Thank you. Beautiful things. And I truly do believe it, you’re just describing the ideal way. Really, to go about your recovery, you really are. The book that I’m writing has been was written because I interviewed 10 People who said strike was the best thing that happened to them.
Bill Gasiamis 1:27:34
And they are all describing what you’re describing. And it’s, for some of them, it was immediately that they thought that for some, for some of them, it took five years, 10 years, whatever. But the reason, they’re still living with deficits, they’re still living with all the things that stroke had done to them.
Bill Gasiamis 1:27:54
But the growth, the personal growth has been tremendous. And they are, like me don’t recognize themselves. They’re completely different in the way they go about life. So what’s going to be interesting for you is to listen back to this interview, and hear yourself, speak about yourself. That’s gonna be really cool.
Natalie Mazer 1:28:18
I have to admit, I was a little nervous, because it was like, Oh, I hope I don’t have trouble speaking or lose my train of thought.
Bill Gasiamis 1:28:24
You are perfect. I’m going to edit this is going to go live, maybe tomorrow the next day. So it’ll be available very quickly. So listen out for it. Reach out anytime there’s anything happened, do you just let me know. And I’m gonna let you get back to the rest of your day or night or whatever you got there.
Natalie Mazer 1:28:44
Before I let you go, though, I just I honestly like from the bottom of my heart, I just want to say thank you for your work. Like I think it’s just, you know, it’s really like, I don’t know, it’s just like, I remember I came across your web because like, I remember initially going to like heart.org just to see like, you know, weather conditions.
Natalie Mazer 1:29:04
But like with processing deficits, like I remember, like, I probably like didn’t even like, though, the site was so busy, I probably even skipped most of the information was like, I didn’t feel like there was any tools there.
Natalie Mazer 1:29:15
But like, I know, just when I came to your site, and like, just by being able to listen to other people and their stories, like it really normalizes a lot of the experiences and it’s just like, it’s just so powerful because you feel like, you no longer feel like, Am I making this up? Is something wrong with me? Is this in my head? Right? It’s just like it. So thank you. Thank you so much for your time.
Bill Gasiamis 1:29:43
All right for time. I don’t have a problem with time, I’ll tell you. So it was it’s exactly the tool that I’m missing. And and part of it is every time I speak to somebody, I have my own therapy session, right this is this is what this My guests don’t realize it’s a free therapy session for me. It helps all of us. So so I get to meet amazing people and learn from them and hear the stories and all that kind of stuff.
Bill Gasiamis 1:30:17
And every podcast episode is roughly the same. But there is such a you, there is such a need for it right? So I’ll explain something to you. So I started in 2017, like you when I thought I was good enough to do everything normal that go back to life normal. And I struggled, and I struggled, and I couldn’t get it done.
Bill Gasiamis 1:30:39
And I wasn’t putting out a lot of episodes. So it was only in the last, say, three years that I’ve decided to put out one episode per week, or as many weeks of the year as possible. And I’ve managed to do think 52 weeks for a couple of years in a row now. And I’ll just give you an idea.
Bill Gasiamis 1:31:03
At the beginning, maybe 20 people a month are listening to the podcast, right? No way, which is normal, which is normal. But yeah. But that heart hard for my heart to deal with only 20 people, how am I caught, you know, surely more people should listen to it. So last month, there was more than 8400 people that listen to the podcast last month alone.
Bill Gasiamis 1:31:29
So it has grown from 20 people listening per month, to 8400 per month. And as far as I see it is all the episodes are basically the same. But the demand for it is only increasing. It has not stopped going up at all since the moment I started.
Bill Gasiamis 1:31:59
So I I’m grateful that people want to be on the podcast and let’s face it, you know, it’s not just me doing this is a community that’s doing that collectively, putting their stories out and making a difference to every person. And this, and this is the beauty of me. Okay, because I brag about myself, but then I’m a co collaborator with another 250 people.
Natalie Mazer 1:32:28
But what I think what you’re doing that’s so powerful, is you’re bringing people together. And I think just even like normalizing the fact that you are not over 65 Right. And that’s like, but it’s true.
Natalie Mazer 1:32:40
Like, like the that’s like the like I remember just asking, like in the hospital asking us like, like, how am I going to go back to my life like, and like she’s like, like, she’s like, well, just, you know, you’re walking like your arms a little numb, but it’s okay. It’s working. It’s like, if I was a retired elderly person, it’s one thing here I’ve got like, a career and three young kids like it’s a very different
Bill Gasiamis 1:33:13
and even an even for older people. Yeah, they do. They don’t really tough. Okay, they’ve because they’ve had longer to be in their identity.
Natalie Mazer 1:33:25
Oh, for sure. I’m sure that identity crisis is maybe stronger than what we experienced.
Bill Gasiamis 1:33:31
It’s so huge, okay, because I don’t have a fixed identity, in the sense of I am. And then I label myself with my work, I label myself with all these things. I used to do that. But I don’t do that anymore. I am not my labels that I give to myself, I am not who I introduce myself as when I go to a party. And what and what that means is that I’m like you said, I’m open.
Bill Gasiamis 1:34:05
Now I have the unique experience of living in the body that I’m living in right now in the way that I’m living right now. And as far as I’m concerned, not all of its fun. But
Bill Gasiamis 1:34:22
I get to experience two versions of my body. And and the part that gets frustrated about that is the part that compares to my previous way that my body was experiencing life. And, and that comparative comparison makes me feel like a little bit like I’m missing out at the moment.
Bill Gasiamis 1:34:47
But the reality is, I’m not missing out on anything. I’m doing more amazing things that I’ve ever done. And I need to keep reminding myself of that. And if we think about it Our version of stroke and thankfully our condition after stroke.
Bill Gasiamis 1:35:06
It’s nowhere near the type of experiences that perhaps Stephen Hawking, the great physicist, was experiencing. But even in his most debilitated way, he had a tremendous impact on the world. And remained and became a famous physicist, and was leading
Bill Gasiamis 1:35:31
and was leading the way in his field. And all that he had that worked for him was his brain. Yeah. Right. So it’s like,
Bill Gasiamis 1:35:44
he gets to be a person in a body and live normally. And then he gets to be a person living this completely different version of how the majority of people on the planet live. And yet he has his biggest impact, then. Yeah. And we think that we’re struggling because we are living with a left side deficit, or whatever our issues are, that we create in our head that are just
Bill Gasiamis 1:36:15
stories that we tell ourselves, right. So Stephen Hawking’s quote, is in the first chapter of my book, at the beginning of the first chapter, it says, Do not be disabled in spirit, as well as physically.
Natalie Mazer 1:36:28
Oh, my gosh, is that was that something? He said? That’s so beautiful. Yeah. That’s his, you know, it’s so beautiful that you bring up that his, like, the big thing is his brain that’s like, my whole entire life, I always thought was like, Oh, my brain is my most valuable possession.
Natalie Mazer 1:36:43
And it’s like, because because he gets me through things, and it makes me successful and this other stuff, right? And then, like, to me, it was like, Oh, my gosh, having a brain injury, like that hurts so much on so many levels, right. I was. I was just like, and I think that was part of reason why I tried to shove it down so deep because I was like, I cope like that.
Intro 1:37:02
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The post Stroke Saved My Life – Natalie Mazer appeared first on Recovery After Stroke.
Dr. Eva Mistry is leading a project that aims to improve patient outcomes for people that had a previous disability before they had a stroke.
Dr. Eva Mistry MD
Highlights:
01:16 Introduction
01:46 What does Dr. Eva Mistry do?
06:42 The gap in stroke recovery
11:41 Pushing your limits despite the fatigue
15:19 The Disability Grant Project
23:54 The Turnaround time for starting a research project
30:42 Empowering Patients and Clinicians through Shared Decision-Making Tools
43:33 Required number of people to begin the study?
Transcription:
Dr. Eva Mistry 0:00
Our plan with this study and I hope that more and more studies will kind of adopt, to work with this wonderful group of our patient partners to come up with materials, and shared decision-making tools that could be used by clinicians and patients in a language that they can understand what the study means and what the implications are for that particular patient that is being seen at the bedside, right? Because these results are generated based on 1000s of patients data, but then how do you translate it to that particular person that you’re seeing at bedside? All of the very important things.
Intro 0:47
This is the recovery after stroke podcast. With Bill Gasiamis, helping you navigate recovery after stroke.
Bill Gasiamis 0:59
Hello, and welcome to episode 244 of the recovery after stroke podcast. My guest today is Dr. Eva Mistry, who is an Assistant Professor of Clinical neurology and rehabilitation medicine in the College of Medicine at the University of Cincinnati.
Introduction – Dr. Eva Mistry
Bill Gasiamis 1:16
With a team over 12 sites across the United States, Dr. Mistry is working on a research project that for the first time is specifically looking at how to better support stroke survivors that have had previous disability before they had a stroke. Dr. Eva Mistry. Welcome to the podcast.
Dr. Eva Mistry 1:36
Thank you. Thanks for having me.
Bill Gasiamis 1:38
My pleasure, thank you for being here, can you give us a little bit of background in the kind of work that you do in the research that you do?
What does Dr. Eva Mistry do?Dr. Eva Mistry 1:46
Sure, as you know, I’m a stroke neurologist at the University of Cincinnati, and I do clinical research and stroke, mostly in clinical trials in the acute stroke space, so kind of optimizing medical management after acute stroke, I’m also kind of involved in novel treatments, both medication wise and devices wise of acute stroke.
Dr. Eva Mistry 2:17
And the types of studies that I do range from kind of development, early phase development of these new treatments to all the way to kind of more late phase comparative effectiveness studies around increasing equity of, you know, providing these treatments to stroke patients with various co-existing kind of conditions and things like that. So, but mostly around acute stroke, therapeutic from early phase to like phase clinical study.
Bill Gasiamis 2:55
How did you become a neurologist in this field? What is the interest? How do you get excited to learn about this type of thing, and then help people who you don’t know who have had a stroke?
Dr. Eva Mistry 3:08
My journey to neurology kind of began very early in medical school I really liked in all my basic science subjects, everything related to brain very, very much and that kind of I knew that I would do something that was related to brain. And when I was in training and residency in neurology, kind of stroke neurology, or vascular neurology was particularly interesting to me, because you could really help people in real time by kind of being present thinking fast and acting really fast could mean surviving with disabling deficits versus recovering from a stroke.
Dr. Eva Mistry 3:52
And it kind of really called to me, and that’s why I kind of chose vascular neurology, it’s really good on I was going to do big clinical vascular neurologist after that, and my plan was to just practice in a hospital setting as a stroke neurologist, but I started dipping my feet into research right after some of the very large, you know, device based therapy trials came out in 2015.
Dr. Eva Mistry 4:24
And my first kind of question was management after that procedure, clinical management after that procedure, particularly related to blood pressure management. And so that kind of just dabbled through and I kind of did one study after the other in that space and then gained some methodologic expertise and then it kind of just branched out into various questions.
Dr. Eva Mistry 4:51
I will say that the one thing that has helped the most is kind of, in clinical research, you see patients with an open mind. And that just helps you consider your next research question because you identify the gaps in the way you practice and the data that you have and don’t have.
Dr. Eva Mistry 5:12
And so that has been definitely eye opening. And in terms of what keeps me going in clinical research is just a sense of purpose thereafter is to kind of know that the work that I do helps many people and not just somebody that I am seeing in real time at bedside at the moment. And so it just kind of knowing that I’m able to affect, you know, human health at large, that kind of gives me a sense of purpose to keep going and clinical research.
Bill Gasiamis 5:46
Yeah, it’s pretty cool. Do you have to be very curious person to work in your field?
Dr. Eva Mistry 5:55
I think so I think as I had mentioned before, I think you really have to have an open mind about where the gaps are, and identifying those gaps. And then definitely curiosity plays a lot of part. But then there’s more to it. You know, you can have questions.
Dr. Eva Mistry 6:16
But then there’s about finding somebody who find your question interesting, and the way you communicate to them, especially funders who, give you the funding to do that research. So there’s a little bit of an art to it about how you write it how you synthesize your question and things like that. So there, there are a lot of layers to be a researcher. But definitely curiosity is the first one.
The gap in stroke recoveryBill Gasiamis 6:42
The thing that you’ve mentioned a couple of times already is the gap, you talk about the gap, we hear about that from stroke survivors a lot, one of the biggest gaps that I’m trying to feel is the one where, you have a stroke, you go to hospital, you get patched up, and then you go home, that is a massive gap, because every bit of information that’s necessary is missing because we’ve never been here before.
Bill Gasiamis 7:09
We don’t know what to ask, we don’t know how to solve problems. And there seems to be so many of them, we don’t know where to start. And this is what the podcast does, it kind of fills in a few of those knowledge gaps. And what I try and do is paint a picture for people listening about the stories that stroke survivors share that there’s a terrible situation that makes them end up in hospital, then there’s a difficult time at home.
Bill Gasiamis 7:42
And then over time, there’s some form of turnaround and some kind of a recovery. And then there’s some kind of return to not normal, but return to life. And it follows that path. And it’s a very common theme. You see it for most people that the timeline is very different for everybody. There isn’t a specific I can’t say to everybody you’ve had a stroke that six weeks, or, you know, that’s nine months or it’s not like a knee injury or some other type of injury, like a muscle injury.
Bill Gasiamis 8:19
So people struggle to go through the process of dealing with the unknowns all the unknowns about stroke. How do we move on from this because they probably have had a muscle injury or knee injury or some kind of injury in their life. And they’ve always had that beautiful timeline that they can recover and then get back to life.
Bill Gasiamis 8:47
And what’s hard is when you get back, you’re dealing with fatigue, and you’re dealing with all the trauma, perhaps brain surgery, and you’re dealing with all those things. And then somebody says to you have to exercise. And I know how important exercise is it is probably I’m writing a book and one of my chapters is about exercise and the benefits of exercise.
Bill Gasiamis 9:13
But then, for me, exercise was never harder in my life until I had brain surgery. And then I had it was more important than ever but then also was the hardest time to do it. Tell me a little bit about exercise specifically and how it benefits people who are recovering from stroke.
Dr. Eva Mistry 9:36
I think exercise definitely kind of helped in the simplest term, rewiring the brain to the maximum potential that you could have for stroke recovery. Again, as you mentioned, that potential looks different from person to person. So many factors affect it.
Dr. Eva Mistry 10:00
I think the biggest factors that affect everything from how it was treated in the acute phase to what happened in the hospital, what kind of prevention treatments are offered, and then what kind of rehabilitation therapies or exercises or speech therapy or occupational therapy has been offered for how long the doses, different kinds of experimental recovery therapies that were offered, things like that.
Dr. Eva Mistry 10:26
There’s so many variables, social support, after stroke is an extremely important variable that affects people’s recovery quite a bit. What kind of caregiving and what situation they’ve had it. So there’s so many variables, and that’s why everybody is different in terms of their trajectory of where they go, and how they go there. But in terms of exercise, yes, it’s extremely important.
Dr. Eva Mistry 10:55
But we as clinicians also understand that, that’s hard, not just because of the maybe physical disability that’s been sustained as part of stroke, but there’s a brain injury and brain injury causes chemical imbalances that in itself can cause fatigue, and mood change as motivation changes.
Dr. Eva Mistry 11:18
And so it’s all kind of a part in parcel. So oftentimes, that our patients also tell us is that, you know, the fatigue is kind of out of proportion to the actual physical limitations, and that has a lot to do with how, you know, the brain is injured. That’s the bottom line.
Pushing your limits despite the fatigueBill Gasiamis 11:41
The fatigue is out of proportion. I love how you explained that, because it’s so out of proportion, it cannot even better explained. And sometimes there’s a really big price to pay. I remember, in my first few days of rehabilitation in rural Park Rehabilitation Hospital in Melbourne, where I’m from the one or two minutes of rehabilitation, ended up becoming half-a-day recovery or longer.
Bill Gasiamis 12:12
There seems to be a massive price to pay. And I can see how that can put some people off from getting back up the next day to let’s do this again. So it gets better, though it does improve, why is it important to get to the limit and then push beyond the limit? Or the barrier or whatever that is? Why is it important to sort of get there and do it, even though it’s really, really hard?
Dr. Eva Mistry 12:43
Um, I would say that definitely kind of pushing the barrier is first disclaimer that you should always follow your physical therapists and occupational therapists advice and definitely don’t push yourself beyond what they say you should, because, like you said, it’s about consistency, it’s not about pushing that barrier one day and not being able to get up for next three days, it’s about, you know, consistently doing the maximum you can consistently.
Dr. Eva Mistry 13:15
But also to the stroke recovery happens, almost kind of, you know, exponentially in the first three to six months after stroke. And so I would say kind of pushing yourself to the maximum in that early phase and kind of getting the most off that early recovery period, is maximally important. And I know that that’s the hardest period as well. And that stroke is quite fresh and everything.
Dr. Eva Mistry 13:44
Everything is not frankly, your life has changed, you know, in an instant. And so that’s definitely hard. But also, that’s the kind of the right window to gain maximum benefits of what your therapists are asking you to do. So I would definitely kind of recommend following their advice, keeping at it consistently, not overdoing it to the point that you can’t get up the next day and can’t do it again. But yeah.
Intro 14:12
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse, and doctors will explain things, but obviously, you’ve never had a stroke before. You probably don’t know what questions to ask.
Intro 14:37
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying and head to recoveryafterstroke.com where you can download a guide that will help you it’s called seven questions to ask your doctor about your stroke.
Intro 14:56
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery, head to the website. Now, recoveryafterstroke.com and download the guide, it’s free.
Bill Gasiamis 15:15
Tell me a little bit about the project that you’ve been working on.
The Disability Grant Project by Dr. Eva MistryDr. Eva Mistry 15:19
I’m involved in many projects, but the one that I’m assuming you’re talking about is the disability grant. And that’s funded by the Patient Centered Outcomes Research Institute, in the United States, the project is basically fundamentally just trying to understand the comparative effectiveness of a treatment called endovascular clot retrieval treatment to medical management for patients who have a pre-existing disability prior to their stroke.
Dr. Eva Mistry 15:51
And so that could be from many conditions, including a previous stroke, or kind of, you know, having a knee replacement or being in a wheelchair for other reasons and things like that. And so we’re trying to understand if offering this particular treatment to patients who have a pre-stroke disability, improves their outcomes after stroke.
Dr. Eva Mistry 15:51
And really, this shouldn’t really be a question, but it is, why it is is because in stroke, when we do research of new therapies, we tend to kind of exclude patients who have pre stroke disability. And the reason why we do it is because we want to measure outcomes off these new therapies in terms of how much disability was saved in the long-term.
Dr. Eva Mistry 16:39
And if you include patients who are kind of disabled at baseline, and you reduce that chances of understanding that if there was an improvement in function and things like that, so that kind of translates into gaps in how we offer clinical care to patients who have pre stroke disability.
Dr. Eva Mistry 17:01
And so the project is just trying to fill that gap with after generation of data to understand if we should be, you know, offering treatment to pre-stroke disabled patients and, and in long term big picture goal really is to generate data so that the future researchers don’t end up excluding patients with pre-stroke, disability as a knee jerk reaction. But really kind of think about what outcomes and this population looks like and how they can use this data to make sure that the stroke research is equitable for all patients in future.
Bill Gasiamis 17:41
That’s a really interesting thing. All right, this is gonna sound strange, but maybe not to you because you’ve been doing some work in this field. But I never considered that this is gonna sound so bad when I say I never considered that people with a previous disability could have a stroke.
Bill Gasiamis 18:00
Oh, my God, I can’t believe I haven’t said that. But it’s such a strange thing. Because you see people who are disabled, you assume they’ve had a stroke or something like that already. And that’s why they are physically disabled.
Bill Gasiamis 18:18
But it makes sense that they’re just normal human beings who are susceptible to stroke. Is there a possibility that people who are previously physically disabled and therefore in a wheelchair are at higher risk of certain types of stroke?
Dr. Eva Mistry 18:34
It’s a good question to answer. So in terms of data, we know that anywhere from 15 to 30% of our patients that we see in the emergency room with stroke have a pre existing disability. So this is not a small proportion of patients that we’re talking about, it’s probably fully 1/3 of our stroke population.
Dr. Eva Mistry 18:56
But in terms of high risk of having a stroke, it could theoretically be the case. I mean, obviously, a lot of these patients, like you mentioned, pre-exists prior stroke, and that is why they’re disabled, having a previous stroke increases kind of theoretical your risk of having a future stroke.
Dr. Eva Mistry 19:14
So in that sense, you would, you know, some specific types of functional limitations may kind of increase that risk as well. For example, if someone is wheelchair bound and not move their legs too much, they can form blood clots in their legs and they could secondarily have stroke from those and things like that. So it is a bit complicated answer kind of depends on what the cause of preexisting disability is. But yeah.
Bill Gasiamis 19:41
And what was the complication with people that were previously disabled? In including them in their studies in the past, what did people feel was happening? Did they feel that perhaps it was messing with the data or did it at a level of complexity that was too hard to deal with? Or how was it that they were being excluded?
Dr. Eva Mistry 20:08
I think it’s probably the latter. And the reason is because as I mentioned, the outcomes of these therapies were measuring a score called modified rank in score, which is a score that goes from zero to six, zero is no disability. One is some two with kind of mild disability, three of moderate disability 4 or 5 (inaudible) disability, six is deaf, so it’s kind of a varied disability centered score.
Dr. Eva Mistry 20:36
And so the research studies that we have been designing thus far, just kind of says that because our outcome is measured on the zero to six level score on what the patient’s disability level is, we’re not going to include anybody say, for example, has an MRS two or greater, or three or greater meaning mild or moderate disability, because at the end of the day, if we include patients who have a pre-existing MRS of three, no way at 90 days, their MRS is going to be less than three, which is what therapy is trying to measure.
Dr. Eva Mistry 21:13
And so it kind of adds a level of complexity. But what we’re trying to do with the study is kind of arm the researchers with the data of what the outcomes or relative outcomes of these patients with them without therapy looks like so that they can account for that in their research studies and say, hey, you know, if we include persons with disability.
Dr. Eva Mistry 21:39
Maybe we should use this alternate outcome measure for them or account for this kind of level of, you know, change or, or reduction in the effect that we’re we’ll see, but well, we should include these patients, because A, they are quite a bit of a significant proportion of the patients that that would be eligible for research. And so you’re generating more generalizable results at the end of the day.
Bill Gasiamis 22:07
And you’re increasing the pool of people that you can bring into the study as well.
Dr. Eva Mistry 22:13
Exactly, exactly.
Bill Gasiamis 22:15
I imagine that’s difficult, trying to find people to bring into studies to give you accurate data, or to give you information that you can use to get some sort of an outcome is it hard finding people?
Dr. Eva Mistry 22:33
You know, acute stroke research is always a little bit hard. Because if you think about it, kind of probably patients are at the worst time of their life, their families, and it’s just kind of it hits you like right lightning, right, there’s no warning and then you’re in a setting in the ER, and you’re being seen by doctors that you have no rapport with a relationship with, you’re probably seeing these new faces and the first time.
Dr. Eva Mistry 23:03
Hopefully, I can say for the healthcare community in general, that we generally we have the best interest of the patients that we’re seeing in front of us. And and that’s why we offer research, but it is hard to build trust, it’s hard for patients to see this doctor who they’ve never seen in their life, no matter how much they say that they’re saying things in their best interest.
Dr. Eva Mistry 23:25
It’s just hard to build that trust and consent to research studies and an acute stroke research. So these are complexes, sometimes it’s kind of a life or death type of situation. So we understand that and so it is generally harder to enroll in acute stroke research studies compared to say, for example, cancer research where you have a pre-existing relationship with your doctor or clinician.
The Turnaround time for starting a research projectBill Gasiamis 23:54
So when you go through a process to come up with the idea for the study, then it gets funded. And then you recruit people to do the study, how long does it take to get to the end of a study like that? How much time and effort goes into that?
Dr. Eva Mistry 24:13
Every study is a little bit different. In terms of more stringent funders, for example, PCORE, or your NIH or things like that they require from researchers information that is backed by data on how many patients do they expect they will recruit, say in a month or a year, and how many sites and so they require kind of a very well laid plan on how many patients how many sites at what rate and so with that math, it’s going to take us four years to finish the study or five years to finish the study or finish the recruitment.
Dr. Eva Mistry 24:58
And then there’s the follow-up period usually for stroke study, that’s about three months. So, taking into account, we had to build what we call kind of a recruitment and retention plan. It’s a whole kind of five page document, we had to submit to the funders to justify that it’s going to take us five years based on this calculation, things like that.
Dr. Eva Mistry 25:18
So generally, it’s the grants are about five years, typical grants are about five years. But of course, there’s no rule that you can’t get it done in, you know, shorter period actually is great if you can get the study done in a shorter period than that.
Bill Gasiamis 25:35
You once the study has been done, and the research has been created, and you have some data that then what happens, then? What’s, do you do with that data? How do you implement that into, say, a hospital setting? Or how do stroke survivors benefit from that?
Dr. Eva Mistry 25:54
Great, great question. So once we have that data, we conduct what we call statistical analysis. And that has also kind of plans for those are usually specified before you start to study to be most kind of robust that you will stick to what you said you were going to do. And so we do the statistical analysis according to that plan and find out if the treatment worked, or it didn’t work, or was there safety issues, things like that.
Dr. Eva Mistry 26:26
And if it worked, it didn’t work better in a certain population, versus the other things like that. Then we publish those results for the scientific community. And we put it up in the clinical trials.gov website as well for patients to click and see what those study results were.
Dr. Eva Mistry 26:47
All of this is done in a de identified manner, meaning none of the patient identifiers are included anywhere, this is all kind of bulk aggregate data are published so that nobody can kind of go back and trace to a particular patient. So after all of that, as done, different things happen.
Dr. Eva Mistry 27:09
So the hope is that the clinicians will read it at least if the studies are published in high impact journals that they will read it and they will mullet. A lot of times these results are kind of presented at large scientific conferences where a lot of stroke doctors and clinicians attend nurses attend and things like that pharmacists.
Dr. Eva Mistry 27:32
And so hopefully, the results are kind of disseminated broadly to the scientific community that they will start offering to patients. But the funder that I was alluding to earlier, the Patient Centered Outcomes Research Institute, and our study as well is kind of very keen on making sure that patients are partners in the study.
Dr. Eva Mistry 27:53
And so in our study, we work with three patient partners. One is a stroke survivor, one is a caregiver of two parents who have suffered from stroke. And one is a person who has lived with a cardiac heart condition related disability for her entire life to give us a perspective of what is it like to live with a disability not related to stroke? And what would you like happen to you if you had a stroke and things like that. So all in all,
Bill Gasiamis 28:25
just a quick break, and we’ll be right back to the interview. As a stroke survivor, I understand the difficulties of finding the right information about post stroke nutrition. That’s why I developed the course five foods to avoid after stroke. While most people are talking about what to eat after a stroke to support brain health, and recovery, very few are talking about what you should avoid eating after a stroke.
Bill Gasiamis 28:49
If you want to support your brain to heal, are curious about the five foods that may make matters worse when you consume them, then you may benefit from this course. In the more than five hours of interviews we discuss the five common foods that cause inflammation in the body and brain and how they could interfere with healing and how they may make fatigue worse.
Bill Gasiamis 29:10
They’re just $49 This five part series of more than five hours of interviews with full PDF transcripts for download. mp3 is for download, and videos will give you everything that you need to know about the five foods to avoid and why the modules include eight reasons to quit sugar after a stroke. seven reasons to quit caffeine after a stroke. Eight reasons to quit gluten after a stroke.
Bill Gasiamis 29:36
Six Reasons to quit dairy after a stroke and six reasons to quit alcohol after a stroke. And probably that is one of the most important things that you have to and should quit after a stroke. It’s interfering with your recovery.
Bill Gasiamis 29:53
Visit recovery after stroke.com/courses For this and other specifically designed short and easy To understand courses that are made by a stroke survivor for stroke survivors, once again, you’ll get more than five hours of content, all audio is available to download in mp3 format for listening on the go full transcript of all the content to take notes on, or read instead of listened to.
Bill Gasiamis 30:19
Presented by a stroke survivor for stroke survivors, also presented by a trained nutritionist and performance coach, you will also get 24 hours of access, lifetime access to courses purchased, and you’ll be able to interact with yours truly, in the comments section, go to recovery after stroke.com/courses to check them out now.
Empowering Patients and Clinicians through Shared Decision-Making Tools – Dr. Eva MistryDr. Eva Mistry 30:42
Our plan with this study and I hope that more and more studies will kind of adopt this is to work with this wonderful group of our patient partners to come up with materials then, and shared decision making tools that could be used by clinicians and patients in a language that they can understand what the study means and what the implications are for that particular patient that has been seen at the bedside.
Dr. Eva Mistry 31:13
Right? Because these results are generated based on 1000s of patients data, but then how do you translate it to that particular person that you were seeing at bedside? All of the very important things.
Bill Gasiamis 31:28
I’m curious about these types of studies. Often, I talk to people about studies, and they’re done by English people, English speaking people. Do these studies ever get translated into other languages for application in other countries or for uptake by researchers or doctors or patients in other countries? That
Dr. Eva Mistry 31:52
is just a great question. So in terms of the kind of the primary publication itself, it is usually in English, but this shared decision making tool or kind of a, a kind of a summary of results in lay language. In this particular study called tester that I talked to you about, we have budgeted for translation costs to have those translated in in common languages.
Dr. Eva Mistry 32:26
To help facilitate those bedside discussions, not just to other countries and United States, there are regions where we have many non English speaking patients.
Dr. Eva Mistry 32:36
In fact, we have chosen our sites to have representation of non English speaking patients, and we have kind of budgeted for translate our costs and non English language consent from translations and to actually we want those patients in our study to to make sure that that it’s applicable to all of those patients, not just English speaking patients. So yeah, excellent question.
Bill Gasiamis 33:05
I know that in Australia, there’s not so dramatic amount of populations where English is not spoken at all. I know, my parents, when they immigrated from Greece, in the 60s, they’ve kind of learned to speak enough English to get over the line. And there was always a now there’s translators available, not that they’re involved in any studies or anything, but every time there’s been a hospital visit or a doctor’s visit, there’s always a bit of a language barrier.
Bill Gasiamis 33:33
And I feel like perhaps they miss out on some things that they would benefit from simply because they don’t understand the application to them, because it’s being explained by somebody who perhaps is not fluent in Greek. And that’s okay. Like, I kind of get it. But then I’ve interviewed some researchers also from the United States who are based in the border towns in between Texas, and Mexico.
Bill Gasiamis 34:03
And that’s a completely different world there compared to what it would be like, for example, in New York City, or one of the other major capitals, and she deals specifically with Spanish speaking people.
Bill Gasiamis 34:16
And it was interesting for me to remember that now that we’re talking about this and, and the problem, you’re doing this great work, and then and then there’s a whole bunch of people in a community who potentially miss out because of this lack of translation. Now, is it a new thing to have research data translated in different language?
Dr. Eva Mistry 34:38
I would say unfortunately, yes, we should have probably been doing this all along. I think that it’s happening more and more as we kind of start becoming aware of the patients and people that we’re leaving behind by not thinking about these things proactively and an ongoing Half of scientific community sadly, yes, but but I hope that we will do better by by making sure that we translate our results in inappropriate languages.
Dr. Eva Mistry 35:11
So for tested, we have New York City, for example, Mount Sinai has a ton off of this kind of diversity of patient population, including various languages. We have Miami, a lot of Spanish-speaking patients, LA, a lot of Spanish-speaking and other languages. So we’re hoping to kind of tap into that geographic and ethnic diversity to generate more equitable and generalizable results across communities to
Bill Gasiamis 35:44
Is it a blind spot, perhaps from the funder’s perspective, because you guys go to the funders, and you say to them, Hey, we need some money in this, okay, here’s some money for the research. And then they don’t say, here’s some money for everything else. after that.
Bill Gasiamis 35:57
So you’re limited, as well as it’s just perhaps something that hasn’t been considered because the data seems to be the most important thing. I feel like the scientific community has, hasn’t placed enough importance just we’re talking about in the decades beyond right now.
Bill Gasiamis 36:16
In, in getting that information out, there seems to be a lot of people who love research, love learning, love discovering, but disseminating information is not necessarily their key attribute. It’s not something that they love doing. And it kind of is a, it seems to get lost. And there’s seems to be a bit of a blind spot in that space. Does that resonate with you? Or is that maybe me just going to a different tangent?
Dr. Eva Mistry 36:42
I think it definitely I wouldn’t have it, it’s difficult. So what you’re alluding to, it’s a science on its own. It’s a walk of science of stone, it’s called implementation science, of understanding how research results are, are uptaken by both scientific community and patient community, and understanding the barriers for why not?
Dr. Eva Mistry 37:14
If not, and so there’s a whole branch of implementation science and, and their particular funders that are interested in implementation studies, the particular ones being per quarry, the the a lot of focus on on how this will kind of get to the end users and, and not just patients and users can be, can be insurers, for example, right?
Dr. Eva Mistry 37:38
They need to know and understand what we did, why we did and what this means to make sure that appropriate treatments and interventions are reimbursed and paid for end users could be clinician, there are many, many different types of end users, there could be caregivers, a stroke, pop, you know, depending on what the study is.
Dr. Eva Mistry 37:59
So that’s definitely one of the focuses of pakery. There’s HR HR Q, which focuses a lot on implementation science as well. So there’s definitely a whole branch of science that focus in exactly this fourstroke, I agree with you that we probably haven’t tapped into the potential of implementation science to the fullest, and we should.
Dr. Eva Mistry 38:24
But it’s, the research resources are limited. And so I don’t want to I don’t want to say that it’s a weakness of the funders or anything like that, but, but I definitely think that that’s something that we should kind of try to think more about and hopefully fold into our study designs more and more.
Bill Gasiamis 38:44
I didn’t mean to say anything nasty about the funders, who of course, we’re grateful for them. It’s just in my mind. That’s kind of what it seems like but I’m, I’m speaking as an observer, somebody’s completely out of the scientific process. I don’t understand it at all.
Bill Gasiamis 39:03
Other than I benefit from it, i There’s no doubt that I’ve benefited from the work that other people have done. In rehabilitation or in brain surgery, I’ve benefited from all the things that have ever been done with regards to stroke and, and recovery from a hemorrhagic stroke.
Bill Gasiamis 39:21
So I’m eternally grateful. I love it when I get to it to interview researchers, such as yourself. And I know that I know that there’s challenges. That’s why I love to give a voice to people who have a study that they want to tell people about, or give us a bit of an insight.
Bill Gasiamis 39:40
And also, why the other reason I love to interview them is because I think it’s important for me to make stroke survivors aware that they should become available for these types of studies so that they can allow this type of work to be done so that others who come after us benefit from that work, because we’ve benefited from the work that other people have done before us.
Bill Gasiamis 40:06
So I think it’s really important that community is one. And we all benefit from that. And we all need to work together. So you’ve been doing this study now for a little while. How long has the study been running this study about, including people with previous physical disabilities in, in understanding how they need to benefit from rehabilitation services after a stroke,
Dr. Eva Mistry 40:36
which were just getting started. And so so just next month, and a couple of weeks, we expect our kind of funding to arrive. And so we’ve been kind of working on what we call the study protocol, which is kind of the document that outlines exactly how research is going to be done, and what are the kind of stuff between the can and watch, they need to assess, and at what point, things like that. So that’s called the protocol.
Dr. Eva Mistry 41:07
That’s what we’re working on right now. Submitting to we call the Institutional Review Board, so IRB approval after, you know, submitting the protocol. And that’s what we’re working on right now. But April 1 is our start date officially. And so we hope to start patient enrollment after all of those steps are kind of completed in the next four to five months.
Bill Gasiamis 41:34
And a patient’s able to enroll early, are they able to put down their interest for this particular study to be involved in the study early on, or is that something that has to happen later,
Dr. Eva Mistry 41:48
this study kind of enrollment happens within just the first, you know, three to five days of the hospital stay. And so it is a pretty, you know, kind of a sub acute study, if you will, so patients presented the ER kind of get the treatment, a standard care. And then after that they’re enrolled in the study to assess what their pre stroke level of functioning and quality of life was, and things like that.
Dr. Eva Mistry 42:13
And then we follow them after the discharge can collect some of the data on what kind of rehabilitation therapies they received, where they got discharge, what the social support was after discharge. So generating some kind of robust data on on that and then evaluating what their functioning is, what their quality of life is, and 90 days after stroke, to then kind of compare those who got treated versus those who didn’t.
Bill Gasiamis 42:47
And how do you plan to enroll these people? Where do you find them? How do you bring them into the project.
Dr. Eva Mistry 42:54
So we usually enrolled them in the hospital setting. And so every hospital has different workflow on how to identify these patients. But most commonly, there’s what we call a stroke code system where a stroke alert gets activated anytime a patient with acute or sudden stroke comes to the hospital.
Dr. Eva Mistry 43:16
And that might be the best way to kind of identify these patients. And then of course, the study team will how to then determine if they are eligible for the study based on what their baseline functioning was, and things like that, a couple of days into their hospital stay.
Required number of people to begin the study?Bill Gasiamis 43:33
And how many people needed to have the correct amount of people to start this study or to get the right amount of data.
Dr. Eva Mistry 43:44
Oh, I’m so we are a 12 site study. And every site has what we call a site pi, which is kind of a clinician who kind of leads the study. Every site has what we call a site coordinator, or the coordinator, who is the study staff who helps with the consent data collection, things like that.
Dr. Eva Mistry 44:04
And so I would say at a given site, there’s maybe a staff off group on the ground strap of maybe three or four people who who work on this study. And then there’s also the national team, which myself I have three other PI’s with me who work with me and a project manager.
Dr. Eva Mistry 44:26
But then the team is very big, like we have a center where they take care of like all the imaging studies that happen. There’s the IRB, the central IRB, there’s what we call Data and Safety Monitoring Board, which is made up of people who kind of monitor steady progress and a safety issues that are going on that are independent of the of the study team, Principal Investigator, so it’s simple. It’s a big team.
Dr. Eva Mistry 44:56
It’s huge and then they’re patient representatives, as we talked about there. Part of our team as well. And then they’re clinician stakeholders that are part of our team to help us make sure that the end clinician end users will use the results that we generate, and to make sure that we’re doing what’s meaningful to them and things like that. So it’s big,
Bill Gasiamis 45:17
it’s big, it really is big. And it’s really something that you people like me will never understand how big and complex it is. And it’s over 12 sides. So that’s excellent that it’s over such a broad space so that it can get people from a whole bunch of different backgrounds and different places. I really liked that.
Bill Gasiamis 45:36
And then it’s gonna be a while before we have some feedback from this study, before we have some data, how long do we expect before the data becomes available?
Dr. Eva Mistry 45:47
This study is a five year study. So it’s going to be a minute, before before. But hopefully, we’ll enroll faster.
Bill Gasiamis 45:57
Yeah, that’s a big commitment, hey, I really appreciate you reaching out a well, and coming on to the podcast to share the information about this type of work, it’s really important for stroke survivors to know that in the background, there’s a whole bunch of people working for our benefit, I really find that amazing.
Bill Gasiamis 46:16
It’s something that I always say to everybody who I interviewed is doing research in this space. I feel like, it’s such a lovely thing that people do. I know it’s your passion, it’s your work, and you have curiosity. But as the end, as the person who’s the end user, and the benefits from your studies, I really appreciate it.
Bill Gasiamis 46:35
And I want to thank you on behalf of all stroke survivors for doing that. And I know that you’re a busy person, you have a family life, and you have children and all that type of stuff. So I really appreciate your time. And I hope to be involved perhaps, in the future, when you guys do have data or things that you’d like to report, you get in touch and let us know so we can share that information and tell people about it.
Dr. Eva Mistry 47:00
Well, thank you, I think you’re doing the real work. I think, you know, just making sure that the stroke survivors are informed about what’s going on in the field. And being that bridge between clinicians and researchers and patients is really important. And so so thank you for being that voice. We we really appreciate it. I’m sure the stroke survivors appreciate it too. So thanks.
Bill Gasiamis 47:23
Thanks for joining us on today’s episode. Now to learn more about my guests, including links to their social media and other pages and to download a full transcript of the entire interview, please go to recovery after stroke.com forward slash episodes. If you’d like to try the course five foods to avoid after stroke, go to recovery after stroke.com courses and get on board now.
Bill Gasiamis 47:45
If you’d like to support this podcast, the best way to do it is leave the show a five star review and a few words about what the show means to you on iTunes, and Spotify. If you’re watching on YouTube, comment below the video, like the episode and to get notifications of future episodes. Subscribe to the show. If you are a stroke survivor with a story to share about your experience, come and join me on the show.
Bill Gasiamis 48:09
The interviews are not scripted, you do not have to plan for them. All you need to do to qualify is to be a stroke survivor or care for someone who is a stroke survivor. Or you are one of the fabulous people that help stroke survivors go to recovery after stroke.com/contact fill out the contact form and as soon as I receive it, I will respond with more details of how you can choose a time that works for you and me to meet over zoom.
Bill Gasiamis 48:36
Thanks again for being here and listening. I really appreciate you see you on the next episode.
Intro 48:41
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals opinions and treatment protocols discussed during any podcast or the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed all content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill gassy armas, the content is intended to complement your medical treatment and support healing.
Intro 49:15
It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.
Intro 49:36
Never delay seeking advice or disregard the advice of a medical professional your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be called triple zero in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department medical information changes constantly.
Intro 50:02
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Intro 50:18
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The post Improving Outcomes For People With Previous Disability Before Stroke – Dr. Eva Mistry appeared first on Recovery After Stroke.
Raphael DeLeon experienced a brain hemorrhage at age 54 because he neglected to take his high blood pressure medication thinking he would be fine.
Highlights:
01:10 Introduction
01:48 How the stroke happened
05:10 Using Siri to call for help
09:43 Coughing helps when you’re having a heart attack?
13:56 High Blood Pressure and Stroke
17:46 The out-of-body experience
26:49 The moment I met Jesus
34:09 Waking up in a hospital room
44:16 Going back to work after a stroke
53:51 What about cognitive fatigue?
1:10:25 The hardest thing Raphael ever had to do
Transcription:
Raphael De Leon 0:00
Something strange. When I was in the bed, my wife says that, you know, the doctor said, hey, you know, his feet are getting like really rough on the bottom. And they started bleeding. And they’re all like, does he have a condition? And she goes, No, he barely walks barefooted, he takes care of his feet.
Raphael De Leon 0:21
And then they’re like, well, that’s strange. And then one of the nurses in there she goes, she said, hey, you know what he’s walking. That looks like his feet are wearing out from walking. It is crazy okay? it is crazy, because my feet were worn out from walking barefooted, and I was laying on the bed. I was laying on the bed, and you know, nurses and doctors and my wife, they were all looking at my feet getting all worn out, all messed up, and I was just laying on the bed.
Intro 0:57
This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.
Introduction – Raphael De Leon
Bill Gasiamis 1:10
Hello, and welcome once again to the recovery after stroke podcast, this is episode 243 and my guest today is Raphael De Leon, who neglected to take his medication that he was prescribed for high blood pressure. And as a result experienced a brain hemorrhage aged 54. Rafael De Leon, welcome to the podcast.
Raphael De Leon 1:32
Thank you.
Bill Gasiamis 1:34
Tell me a little bit about what happened to you.
Raphael De Leon 1:37
What happened to me? I was at work, you know, normal day. You want me to tell you the story?
Bill Gasiamis 1:45
Yeah, I’d love to know man.
How the stroke happened to Raphael De LeonRaphael De Leon 1:48
All right. So I was at work normal day. I’m an operations manager. So I was making sure that everything was, you know, it was Friday afternoon, you know, I was making sure that everything was ready for the next week. You know, and it so happened that I was gonna have the parking lot painted.
Raphael De Leon 2:09
So I was making sure we have an electric gate. And I was making sure that the electric gate had the proper code to open for the painters on the next day. So you know, having said that, you know, I went to the back of the warehouse, there’s a guy that closes the, you know, in the warehouse, we are about 50 people and during the day on a Friday, so I went to go look for my friend Sergio one of the employees.
Raphael De Leon 2:37
He was nowhere to be found, I guess he had gone home already. So I went to my office. It took a breather, I sat down, you know, logged out of the system, close the lid on my computer. And then I put it in my backpack, but when I put it on my backpack, there was something going on on my torso.
Raphael De Leon 2:59
There was a little tingling and I sat down I was like, wait a minute, what is this because, you know, usually when you get tingles in your body is because you’ve been sitting too long, and you know, your body reacts right? But this tingling it started, like, you know traveling from my arm to my foot and I was like, Okay, this is odd.
Raphael De Leon 3:25
So I got up and when I got up, I immediately fell down, fell down to the floor under my desk. And when I was under my desk, I was like, Oh my God nothing worked on the left side of my body. And, you know, I started panicking. Like, oh my God, what is this? This is crazy. I mean, you know, and I figured, oh my god, I’m having a heart attack. I have never heard of a stroke in my life. Didn’t know what a stroke was.
Bill Gasiamis 4:01
Never had a family member ever knew anybody who had a stroke before?
Raphael De Leon 4:07
Never, never, you know, after, you know, like, I would say about three years ago, I was talking to one of my half sisters in El Salvador. And she told me, that my father died of a massive heart attack. But before he had the heart attack, he had a stroke. But I didn’t know that until about three years ago.
Raphael De Leon 4:32
And you know, when I went back to the doctor, I was kept telling him no, there’s you know, there’s cancer in the family. There’s, you know, heart condition, arrhythmia I mean, there’s all kinds of stuff but no one’s had a stroke. To my surprise my father died of a stroke and then a massive heart attack.
Raphael De Leon 4:54
So but anyway, so I closed the lid on my computer. I fell down on the ground and I was trying to reach for my phone, my phone, you know, my desk phone and you know, I couldn’t move, I couldn’t get up. And I was like, oh my god, what am I gonna do?
Using Siri to call for helpRaphael De Leon 5:10
And then it hit me. I’m like my phone. I was charging my phone on my desk, my cell phone, and I go, Okay, that’s it. I gotta get to my phone. So I tried again, threw all kinds of paper that were on my desk on the floor. And I couldn’t I couldn’t get to the phone. So then it hit me. I’m like, you know, Hey, Siri, you know?
Raphael De Leon 5:42
So, I use Siri.
Raphael De Leon 5:44
(Siri) Okay. Nevermind. But anyway, I said, Hey, you know, call 911. And I don’t want Siri to call 911 right now. Hold on, but anyway. So, I asked her to call 911. And then I got a computer answering and the computer said that it didn’t you know, this system does not take calls from Siri. And I was like, Oh, crap, you know, and then I called my wife and my wife, girlfriend at the time I married her after.
Raphael De Leon 6:34
I called and she was charging her phone. She was cooking and she had her phone on the bed. She was charging her phone. So this is what she told me right. And then I called one of my daughters. I have two daughters.
Raphael De Leon 6:52
I called her and Siri couldn’t make the call because I have a sister named Maritza and I was calling Marissa which is my daughter. Cancel Siri. Hold on okay? Sorry.
Raphael De Leon 7:14
So I was trying to call Marissa and Siri kept calling Maritza and then I said cancel. And then I call my youngest daughter and I you know, I said hey you know, Siri call Nicolette, who was my youngest daughter. And she picked up on the first ring.
Raphael De Leon 7:32
And I told her, Hey, mamas, you know, don’t freak out. But I’m on the floor. And I can’t move. And she’s like, What do you mean, you can’t move? I go, I don’t know. I think I’m having a heart attack. Because I can’t move, I can only roll on the floor. And but I can’t move. I can’t get up. Can you come and get me?
Raphael De Leon 7:54
She told me what do you mean, come and get you woman to call 911? And I go Yeah, call 911 tell them I’m on the floor. I’m under my desk, and I can’t move. And so she called. That was around 6:45 around 8pm? Or I think it was 6:45. Maybe it was you know, I was on the floor rolling I don’t know. The last time I looked at my phone it was 6:45.
Raphael De Leon 8:27
Maybe I rolled on for for a long time. But you know, the paramedics came around 8pm They knocked on my glass window. My office has a you know, a window in the back the whole wall is a window. Then they told me Sir can you move?
Raphael De Leon 8:50
And I go, No, I can’t. And then they asked me how do we get in? And I said I don’t know break something? Because it’s a it’s a high-security office, right. So they ended up going around and they on the receiving docks of the warehouse. They forced their way in in one of the roll up doors. And then they came in. And luckily the office one of the girls in the office left one of them windows open and that’s how they got into the office.
Bill Gasiamis 9:24
How dramatic man I can’t believe what you had to go through to get somebody to help you. It’s dramatic. I can’t believe that the phone doesn’t allow you to call emergency services.
Raphael De Leon 9:36
Yeah, 911 does not take calls from Siri.
Bill Gasiamis 9:42
That’s weird.
Coughing helps when you’re having a heart attack?Raphael De Leon 9:43
It happened to me, but anyway, so well I was on the floor waiting for the paramedics and I forgot to mention that. I kept coughing because I watch TV, and I’m sort of a couch potato, but.
Bill Gasiamis 10:06
I know what you’re gonna say, cough it’s a good thing because it could help you if you’re having a heart attack, right?
Raphael De Leon 10:14
Yeah. Okay. So back in the days I was watching this. I forgot what program it was, but it was red fox red fox was being interviewed by somebody. And then, you know, red fox had a heart attack, and he was on the floor. And then he said that his best friend was a cardiologist.
Raphael De Leon 10:33
And he told him, keep coughing, because that brings oxygen to your brain. And then you can, you can wait until help arrives. So I remember that when I was on the floor, and I kept coughing and coughing and coughing. So when the paramedics came, I was coughing, and they were like, are you alright?.
Raphael De Leon 10:50
And then I go, Yeah, I mean, I can’t move. I don’t know what I have, then they said, Oh, and then you know, and then I stopped coughing because I’m like, Okay, finally, someone that’s gonna help me. And then they took me to the hospital, you know, and I was alert until the minute that, you know, they were deciding, what they were going to do with me i until about midnight, I was awake.
Bill Gasiamis 11:22
What was the cause of the stroke?
Bill Gasiamis 11:26
Just a quick break, and we’ll be right back to the interview. As a stroke survivor, I understand the difficulties of finding the right information about post-stroke nutrition. That’s why I developed the course five foods to avoid after stroke. While most people are talking about what to eat, after a stroke to support brain health, and recovery, very few are talking about what you should avoid eating after a stroke.
Bill Gasiamis 11:49
If you want to support your brain to heal, are curious about the five foods that may make matters worse when you consume them, then you may benefit from this course. In the fun five series of interviews, you’ll hear about what foods not to eat after a stroke. But most importantly, why not from a qualified nutritionist Stacy Turner and performance coach Matthias Turner.
Bill Gasiamis 12:12
In the more than five hours of interviews, we discuss the five common foods that cause inflammation in the body and brain and how they could interfere with healing and how they may make fatigue worse, for just $49.
Bill Gasiamis 12:26
This five part series of more than five hours of interviews with full PDF transcripts for download, mp3s for download, and videos will give you everything that you need to know about the five foods to avoid and why the modules include eight reasons to quit sugar after a stroke.
Bill Gasiamis 12:45
Seven reasons to quit caffeine after a stroke, eight reasons to quit gluten after a stroke, six reasons to quit dairy after a stroke, and six reasons to quit alcohol after a stroke. And probably that is one of the most important thing is that you have to and should quit after a stroke. It’s interfering with your recovery. Visit recoveryafterstroke.com/courses.
Bill Gasiamis 13:10
For this and other specifically designed short and easy-to-understand courses that are made by a stroke survivor for stroke survivors. Once again, you’ll get more than five hours of content, all audio is available to download in mp3 format for listening on the go full transcript of all the content to take notes on or read instead of listened to presented by a stroke survivor four stroke survivors.
Bill Gasiamis 13:37
Also presented by a trained nutritionist and performance coach, you will also get 24 hours of access, lifetime access to courses purchased. And you’ll be able to interact with yours truly, in the comments section. Go to recoveryafterstroke.com/courses to check them out now.
High Blood Pressure and Stroke – Raphael De LeonRaphael De Leon 13:56
It was a mixture of so I have high blood pressure and I used to take my medicine on and off. You know I thought hey, I’m exercising. I you know I’m lifting weights I I’m you know I’m working out and eating healthy but I was overweight but so I figure No nothing’s gonna happen to me.
Raphael De Leon 14:20
You know, I don’t need the high blood pressure medicine. So, I will stop for a while and then I will start taking it. So it was I wasn’t taking care of myself okay? And finally, it got to me, I guess I had an aneurysm and a blood vessel burst and then had a major bleed.
Raphael De Leon 14:48
You know, when I woke up from a 22 day coma, you know, the doctors were you know, they were telling me as soon as I was able to talk to people that you know that I was some sort of miracle because no one. My girlfriend, my wife now, she fought the doctors. She fought the surgeons because they didn’t want to operate on me. They said, Oh, it’s useless, you know, no one survives this.
Bill Gasiamis 15:15
Wow. So you went to hospital? You were awake the entire time until really late in the evening. And then you fell into a coma?
Raphael De Leon 15:26
Actually, the coma was induced, because they said that they needed for my brain to rest. And they were going to do an operation, you know? The craniotomy, and they needed for, you know, because my, my brain was swollen from the bleeding, and it was a major bleed.
Raphael De Leon 15:54
And they said, you know, and they kept telling my wife, you know, they kept saying, you know, he’s is not going to survive, you know, we’re going to do it because, you’re pushing us, you know, she was gonna have me transferred to UCLA. I was in Presbyterian Hospital.
Raphael De Leon 15:54
And she was going to have me transferred to UCLA because they didn’t want to do the operation. So they finally said, they agreed, they said, Okay, fine, we’re gonna operate him, but you know, just so you know, that he might die, and, you know, on the OR, and she said, I’ll take those chances.
Raphael De Leon 16:37
And, and then the doctor said, okay, just so you know, the survival percentage is very low. I don’t know what percentage that was, I think it was between 10% and 20%. And, she said, don’t worry about it.
Raphael De Leon 16:55
I already asked God to bless your hands. And if she said that, the doctor rolled his eyes and he said, like, I’ve been doing this for 30 years, Lady and I don’t need God, and she goes, Okay, that’s fine.
Bill Gasiamis 17:09
So I asked him anyway.
Raphael De Leon 17:10
So 22 days later, I woke up, you know, I woke up I was in a room. First of all, I had, the craziest experience while I was in a coma, I went into a different place. You know, but that’s another story.
Bill Gasiamis 17:34
No, let’s talk about it. Let’s talk about it Rapha, tell me where did you go, man, what did you see?
Raphael De Leon 17:39
Where did I go? Okay.
Bill Gasiamis 17:43
If you don’t mind talking about it, that is?
Raphael De Leon had an out-of-body experienceRaphael De Leon 17:46
Oh, no, of course not. I don’t mind. So, I know, it was 22 days, they said that I was out. But in the place that I went to that I traveled to. It was months. It was months, I wouldn’t go to sleep. But it all started out. Like you know, like waking up every morning. And walking and walking and walking.
Raphael De Leon 18:19
And I was in the streets of Los Angeles. And, all the buildings were at the same height. No, no building taller than I would say 10 storeys high they were all brick buildings. And I knew the place and I walked and I walked for miles. And, and I was barefooted and I don’t like working barefoot, to me, it’s gross.
Raphael De Leon 18:48
I just don’t care for it. You know, I always have to have shoes on even when I go to the beach. I have my water, you know, my water shoes, I don’t like the feeling of the ground. You know? I mean, that’s just me. But anyway, so I was walking on the streets of Los Angeles right, day after day after day.
Raphael De Leon 19:07
And I would walk for my I mean for like, I will take like 30 blocks at a time and I awlays ended up on the same spot. And I will be looking around and looking at the buildings and I’m like, Oh my God, I know this place. So why can’t I get back to where I’m supposed to go? So I walk and walk and walk and you know, something strange.
Raphael De Leon 19:30
When I was in the bed, my wife says that, you know, the doctor said, hey, you know, his feet are getting like really rough on the bottom. And they started bleeding. And they’re all like, does he have a condition? And she goes, No, he barely works barefooted he takes care of his feet.
Raphael De Leon 19:51
And then they’re like, well, that’s strange. And then one of the nurses in there she goes, she said, hey, you know what he’s walking. He’s you know that looks like his feet are wearing out from walking.
Bill Gasiamis 20:05
What the hell man? What an amazing story.
Raphael De Leon 20:12
It is crazy, okay. It is crazy because my feet were worn out from walking barefooted and I was laying on the bed. I was laying on the bed, and you know, nurses and doctors and my wife, they were all looking at my feet getting all worn out, all messed up. And I was just laying on the bed.
Raphael De Leon 20:36
But anyway, so that went on, I walked for many, many, many, many days, I would say months, I would wake up. Or I would like start up every time. Like I said, it felt like waking up every morning. And I would look at the sky, the sky was brown, brownish, like a sepia color on a photograph.
Raphael De Leon 21:03
And the sun was always like, it was always like an afternoon. It was never morning. I looked in the sky, there was no signs of the sun. It was a bright, brownish day. And I would walk every day. And I wanted to get back home.
Raphael De Leon 21:24
And I remember having this you know having a stroke or having something right. Well know what a stroke was. I remember having a heart attack, but I was on the floor. And I was like, oh my God is this hell, I don’t want to say it. But I thought you know if I say it, it can become hell. But I will look up and I will look everywhere. There was no sounds of anything. It was all mute. But I would walk and walk and walk and trying to get back home.
Intro 21:57
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, doctors will explain things. But obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 22:21
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called seven questions to ask your doctor about your stroke.
Intro 22:41
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website now, recoveryafterstroke.com and download the guide. It’s free.
Raphael De Leon 23:01
And then one day I noticed that there was another road. And I and I looked at the road and I was like okay, that’s different. That’s that’s a different road. They haven’t seen that road before. So I walked through that road. And then at the very end of the road, I saw something like look like Dodger Stadium like the baseball you know, stadium.
Raphael De Leon 23:28
Like, what is that thing, so I walked towards it on the way there, you know, it was a long straight growth, too, to the stadium, right. And I saw this guy with long hair going across the road and, and there was like it was a truck, but it was not really a truck. It was like one of those tandem trailers, you know, with a fifth wheel up and down like a little hill.
Raphael De Leon 24:01
And, and the guy that was going across the road, he was, you know, he was picking up people and telling them to get on the truck. And I looked at him and you know, I asked him I you know, I looked at him and I was like, Oh, we’re weird.
Raphael De Leon 24:15
All right, you know, but this is the first time that I was actually I saw people and so I just kept going to Dodger Stadium or whatever look like that they’re saying so when I got there when I got the place that it looks something like I don’t know if you remember MySpace, you know, the program MySpace, or in the background.
Raphael De Leon 24:42
It looked like one of those MySpace backgrounds, you know, and there was music and in the guide that it was like, like a swap meet like, you know, a place where they sell knickknacks and stuff. And then I I looked at the guy and they look like my balls, right? And I was like, what was he doing in here? But, but I didn’t talk to the guy.
Raphael De Leon 25:06
And there were two gypsies. And they had like this, you know, this stand and they have pictures on the on the stand. And then I, one of them approached me, she goes, what do you need? And I said, You know what? I’m trying to get back home, but I don’t know how. And this is the first time that I’m actually talking to anyone.
Raphael De Leon 25:29
And she goes, she goes really, and she goes, wants to take something from the, from the store. So I just went and grabbed two pictures of, you know, the Virgin Mary. Okay. And then I looked at them, and I gave them to her. And then she goes, Oh, okay. And then she gave me a marker.
Raphael De Leon 25:50
And when she gave me a marker, she goes, Just break something in the back of the picture. I go, What do you want me to write and she was anything anything that comes to mind? So I, I, you know, I flipped it picture. And then I wrote my name and my middle. My wife’s name on it. Right, Ralph. And then on the bottom, Cindy.
Raphael De Leon 26:12
And then I gave the pictures back where I only brought in one with pictures. She looked at the picture. And then she goes, Oh, you still have business up there. You go, oh, business up there. Where’s up there? And she goes, Oh, the place where you need to go, you know, you saying you say that you want to go back home.
Raphael De Leon 26:30
That’s where you need to go. And I go, Yeah, how do I get back there. And she will see that guy over there. And then she pointed out that the guy told you the crazy guy that was running across the road, from you know, on one end of the street to you know, across the street, from one side to the next, and picking up people put him in the truck.
The moment Raphael De Leon met JesusRaphael De Leon 26:49
And then I go, okay, so what do I tell him? She was just showing the picture. From the picture, go tell him that you need to go back home from the picture. I go okay, thanks. So I went down the road again. Stopped the guy, the guy smiled at me. It was like, you know, the greatest smile in the world. And I was like, Oh my God, you know, that’s cool.
Raphael De Leon 27:14
This guy is really cool. Right? And he had a face. Like, I’d seen him before, you know, this greenish, brownish eyes, you know, hazel eyes. And for some reason, I trusted the guy. And I looked at him and I was like, oh, yeah, they told me that that I should ask you, you know, the Gypsy back there told me that I should ask you, I should show you this.
Raphael De Leon 27:39
And you will tell me how to get back home. Then and then he looked at the picture. And then he goes, You know what? You still got business up there. And I go where is up there? He told me that I got business out there. But where’s up there? I just want to go home. He goes tell you what, just get on my truck and see that hill, but then he put it down on the road. And there were no more buildings. You know, it was just the hills. You will see that hill over there.
Raphael De Leon 28:10
He pointed at a little hill. He goes, I’m gonna take you halfways I’m gonna drop you off on that hill over there. And, you know, and then you can go back home. I’ll tell you how to get back home. I’m like okay, so I got on this truck. And when I got on the truck, I fell to the floor.
Raphael De Leon 28:34
You know, I was like, what a dummy, right? And then, he just looked at me and picked me up. He just picked me up from you know, from up there way up there and I was I freaked out because I was like, Oh my God, this frickin guy is strong. And I realized, man, how did his arm gets so long to pick me up from the floor, but didn’t think anything of it.
Raphael De Leon 29:00
When I was telling one of the guys, you know, and after I woke up from my coma, I told him the story about this one guy. And then he’s very religious. And then he goes, Dude you don’t realize who that was? And I gone no. And then he goes to your stupid, don’t you know that you met Jesus?
Raphael De Leon 29:21
And then I, you know, I was like, Oh, my God, my whole life. I said, you know, we used to kid around when we’re kids. What if you see Jesus was one day, what would you tell him? And I had all this things in my head. I would tell him this, I would ask him this, I would have that.
Raphael De Leon 29:39
And then when, you know when Peter, my friend, you know was telling me that that I had seen Jesus. I was like, Oh, I said, How do I get back home? You know, that’s all I had in my head. I had all these things to tell him and that’s what they said.
Bill Gasiamis 29:58
But that sounds like it was your mission. Any way. And it sounds like everyone was on board with your mission and your wife was on board. Everyone was on board. So I think you asked him the right question if Yeah, yes. That’s an amazing story, from the perspective of you just you’re telling it so vividly.
Bill Gasiamis 30:20
You’re explaining it in a way that’s so dramatic. You’re a great storyteller. And it’s really engaging. It’s like lovely to hear. And, you know, whatever it is, what it is to you, whatever it means, it seems like it means a lot. And if it helped you get back to be where you are right now. I think that’s an amazing thing, man.
Raphael De Leon 30:44
Yeah. So so he puts me back on the truck, right? But somebody’s back on the truck. And then, you know, then he starts going, we get to the Hill, he goes, Okay, this is where you’ll get off. My go, okay. And then he said, he said to me, you know, it was a fork, he goes, see that road right there, and it was a straight road.
Raphael De Leon 31:10
He goes, you’re gonna walk 22 Miles 20, exactly. 22 miles. And when you get to the very end, that’s where you need to go. Do not look to the sides. Because there’s gonna be a lot of a lot of distractions. And I’m sorry, I forgot to mention when I was in Dodger Stadium, I had the same thing. You know?
Raphael De Leon 31:34
Yeah, my wife, my, my brother, who passed away in 2005, came and told me, Hey, let’s go, let’s go down there, because it’s happening. And they were having a party, you know, downstairs on the ground, and Dodger Stadium and, and then he had a couple of friends who passed away too. And I looked at both of them, and I look at all three of them.
Raphael De Leon 31:58
And I’m like, no matter the schedule, they’re not gonna follow this guys. Because if I go down there, I’d say I’m dead. But, and then when I got When, when, when this guy was telling me to not look to the sides, because there were gonna be a lot of plantations, just to work 22 Straight miles.
Raphael De Leon 32:17
I was like, okay, so I started walking, he, he left, went on the other road. And then, and then I started walking. And the first thing that I saw that I that I did was look to the sides, because, you know, people like to disobey. And then it sounded like there was parties going on.
Raphael De Leon 32:36
So when I looked to the left, you know, all the guilty pleasures of in the world were happening. And it was very tempting. And, you know, I wanted to join in and I was like, Oh, wow, this is cool. I look to the right, same, the same thing. But then I remember, this guy told me to work 22 miles.
Raphael De Leon 32:59
And at the end of the road, I was going to find, you know, my way home. I said, Forget it. I’m like, I’m not joining, I’m not going. So I walked and walked and watch what seems like an eternity, you know, days, I walked that road. And finally, when I got to the very end, there was a chapel, very illuminated chapel. It was bright, almost blinding.
Raphael De Leon 33:25
And I looked at it, and I was I stopped, and I thought, oh, no, heck, no, I’m not going in there. Because I don’t know. If you remember when they say if you see a white light, don’t go in it, because that’s. But then, but then the guy said to go, you know, to go to go to the very end, because that was my way home.
Waking up in a hospital roomRaphael De Leon 33:49
So I just looked at it. And then the doors were wide open all doors, like, you know, like 12 feet tall, or, I don’t know, 20 feet tall, really, really tall doors. But they were open. So I went into the chapel. And then the chapel was all illuminated, it was all bright. And then I looked and I was like, Oh God, what is this? What is this place?
Raphael De Leon 34:16
And then I saw one of my co-workers, you know, who doesn’t work for the company anymore. He was there. And I had looked at him, you know, and he was sitting in one of the benches. And then in the altar, that was my, you know, my wife had a rosary and she was kneeling down and she was praying.
Raphael De Leon 34:34
And, and I walked up to her and I’m like, Oh my God. You know, finally, I think I made it home. So when I was gonna talk to her, the lights went on. The lights went on and there and I heard in the background, hey, he’s waking up. He’s waking up. And then I looked, and it was the room.
Raphael De Leon 34:54
It was the room in the hospital and they’re like, Oh, he’s waking up is waking up. And everybody’s like, You know, they’re coming towards me in the bed. And I looked and I was looking around and I saw their legs in the room. And I was like, where am I? And then there was like, hey, hey, and they kept talking to me.
Raphael De Leon 35:14
And they’re like, you know where you are? And I go, No. And, and then they said, Well, you’re up here. Ah, and we’re here, California. I don’t know. I’m in Australia somewhere. And I will. I will, I kept saying that I was in Australia. And they said, don’t know. This is Whittier, California. europea age. Do you remember you had a stroke and I?
Raphael De Leon 35:38
And then it hit me, right? I was like, Oh, yeah. And then my wife comes up to me. And she goes, Hey, it’s me. It’s Cindy. And I looked at her and I’m like, I don’t know you. I don’t know who you are. It’s me. It’s me. No, I don’t know who you are. I don’t know how you are. And then I saw my mom. And I was like, you know, I cried. And I was like, Hey, I’m back.
Raphael De Leon 36:04
I don’t know where it went. But I’m back. And then. And then, you know, she comes up to me, and she goes, Hey, it’s me. We’ve lived together for nine years. You know, it’s me. It’s Cindy. And, and I’m like, Oh, okay. And I go, What’s your mom’s name? And she goes, my mom’s name is Gloria. And they’re not and then I remember something right.
Raphael De Leon 36:29
And, and then, and then she goes, and I go, do you have good kids? And she goes, Yeah, I have two sons, remember? And I go, yeah, daylon and Ammy. Right. And she goes, yes, yes. And then I go, okay. Okay, I remember you’re now that’s how I woke up, man. That’s from trippy. To when I woke up. That’s
Bill Gasiamis 36:56
really trippy story. You know, I, I could just see somebody turning that into, into a short movie, you know, 30 minutes or 22 minutes, where you’re just you opens with somebody just walking, CPR, dark, bright, just walking, meeting all these people having a conversation, going to the light. And then waking up in a hospital going, Whoa, where am I? What am I doing?
Raphael De Leon 37:23
What are they? They told me? Hey, you better write down that story before you forget it. Forget it. Yeah, I was there. I learned. How can you forget something? So? So we’re from nice at the same time?
Bill Gasiamis 37:42
Yeah. So you. So you were in, in hospital for 22 days in a coma after the surgery, and then you woke up? What kind of deficits did you have? What did you have to learn to do again?
Raphael De Leon 37:59
So, so I stayed in the hospital for two months. And between those two months, I had therapy. The whole left side of my body did not work. I couldn’t move. My arm was swollen my arm, you know, my hand was like, really swollen. I couldn’t move it. You know, one day I woke up and I was I was moving my thumb.
Raphael De Leon 38:25
And they were all excited. Oh, my God, he was moving. He was moving. But I was alert. I was talking to people, they were asking me dumb questions. I’m a computer programmer. And they were asking me what two plus two is and I got so frustrated. I go guys, I do algorithms i i write code, or you know, I write programs for the company I work for.
Raphael De Leon 38:50
And you’re you guys are asking me simple math. No. And I asked my wife, can you bring in my laptop? Can you show him what real math is? And, you know, she caters to me and she brought the laptop and I showed him a few of my formulas and they were like, what is that I go that is my not two plus two.
Raphael De Leon 39:11
Everybody know that two plus two is five, you know, sarcastically saying and then they started laughing. Because as far as I know, it’s for I just wanted to want to make you laugh. They asked me if we threw a rock in water will it sink? And I’m like, Come on, guys, you know, unless you throw it and you know in the Dead Sea, it’s gonna sink but it’s gonna go like this. It’s gonna go slow. And they started laughing they’re like, Oh my God, this guy. You know the answers is guys.
Raphael De Leon 39:40
This guy’s good. This guy, you know, because they were testing my cognitive abilities. Right? Yeah, well, like and they left pretty much left me alone after that. You know, the end. It was just the physical therapy. I couldn’t move my arm. I couldn’t move my leg. They got me out of bed. They tried. You know They put me in this cage.
Raphael De Leon 40:02
You know this Walker, I couldn’t do the walker. So then they gave me something called the Hemi the Hemi Walker, which it had its four legs. It’s it’s like it’s like a little thing like a cage. And then you put it to the right. And then I started walking. And one of the guys one of the deputies said that this guy’s strong, he can do it.
Raphael De Leon 40:28
He doesn’t need you know, he doesn’t need to walk here the full body Walker, he can stand on his feet. And then I started walking. I mean, not walking. started moving. Sorry, moving. Yeah.
Bill Gasiamis 40:43
What does your left side feel like now? What does it feel like?
Raphael De Leon 40:48
It’s painful and daily basis. You know, it’s been three, almost three and a half years. It’s painful every day, different pains. It tingles. It’s limp. But it’s, you know, I can move my you know, my hand now I can. I can move my leg. I mean, I went back to work. See, I had the stroke in May of 2019. In October of 2019, you know, when I went, when I went home, I was in a wheelchair. I was in a wheelchair for almost.
Raphael De Leon 41:24
I went I went home on July 19 of 2019. And, and then then I was on a wheelchair for about a month and a half. And then one day I woke up and I and I told my wife, I’m not getting on a wheelchair again. I’m not. And I you know, and I haven’t really been working with fourpoint cane.
Raphael De Leon 41:50
And you know, in the house, I would never stop I would always be on the move. You know? So far, in three and a half years, I have only fallen four times to the ground. And to me, that’s a record.
Bill Gasiamis 42:07
That’s good man. Well done.
Raphael De Leon 42:11
times I failed because I was freaking exhausted because I myself, no, no. And the first time I went to I went to my neurologist after I came out of the hospital. He said, What are you doing here? My God, what do you mean? What am I doing? Here? He goes, Yeah, you’re supposed to be dead. You don’t know.
Raphael De Leon 42:31
But you cheated death. You know, let me show you your brain. And then he showed me the MRI, some of the picture of my brain. He goes, Look, see all that that’s all blood. You will have the fact that you’re here. You know, standing in front of me with a four point cane. It’s unbelievable. You know, you’re supposed to be there. But you know, here you are.
Raphael De Leon 42:57
Who you are arguing with me because I was like arguing with them and telling them why did what did they get a stroke? I mean, what happened? I exercise my whole life never drank. I mean, I used to drink socially. I never smoke. I never use drugs. I was always like, you know, I’m a workaholic. I love to work.
Raphael De Leon 43:19
I would wake up at four in the morning, 430 in the morning, you know, work out at 630. I will hit work from 7am until whatever time I was at work.
Bill Gasiamis 43:31
And high blood pressure was an issue for a long time. It
Raphael De Leon 43:36
was when the doctor said that it was a mixture of high blood pressure and the stress that I had gone for many years at work. Yeah. Yeah. And being an operations manager. Its stability. It’s a big it’s a big company.
Raphael De Leon 43:54
I work for Goya Goya foods, you know, I am in charge of California, you know, I’m second in command in California. Yeah, and, you know, and we were responsible for the whole company in California, you know,
Bill Gasiamis 44:14
How quickly were you able to return to work? And how did that go?
Going back to work after a stroke
Raphael De Leon 44:17
Oh, yeah, that’s where I was going. That was where I was gonna get to. So I went home in July of 2018. In October of 2018. I drove for the first time again, you know, like a few months after I had the stroke. I was like, Well, you know, I convinced my wife that I was able to drive and then she was like Okay, let’s go in the parking lot.
Raphael De Leon 44:42
Let’s see how you doing in the parking lot and I drove and then she was like, Okay, fine. So I went to a Christmas party to and for the company in December of 2019. And then the year after 2020 I will fit up Being up at home. And then I asked the doctor, hey, I need to go back to work. And he was laughing.
Raphael De Leon 45:07
He goes, you don’t want more time. And I go, Oh, because you’re the opposite to all my other patients, you want to go back to work, everybody beats me for more time at home, and I go, No man because I, I wanna, I want to, I want to be, you know, I don’t want to be one of those guys that that that milks the system, I want to go back to work, I want to, I want my life to mean something. And he was I respect that. So I was gonna go back in March of 2020.
Raphael De Leon 45:37
But that’s when the pandemic hit. Yeah, and the thing got shut down. So I was gonna go back and then you know, and then they said, No, let’s wait it out, you know, because you know, something might happen to you, you already survived a stroke, we don’t want you to get over and get sick, and you know, and then that, and then that dying on us so. So a few weeks went by in August, I was gonna go back again, I called the doctor and I said, Hey, I’m reading it.
Raphael De Leon 46:05
So give me another letter, but I didn’t want to go back to work. So he sent a letter, he emailed it to me, and then I melted back to work and and then I said, I was going back, but that’s when the second shutdown happened. And, and I was like, Oh, my God, and I wanted to go back to work so bad that was, that was sick. I mean, as as much as I love my wife, and I don’t want to be who I am. I didn’t want to feel confined to nothing to watch on TV.
Raphael De Leon 46:37
I hated TV back then. And then finally, in September, again, I call the doctor said, You know what, I don’t care what, you know, I don’t care about COVID I don’t care about anything, I need to go back to work, I cannot stand here anymore. If I get another stroke, because I’m, I’m gonna get depressed of being and in this place, I felt like I was confined to, you know, to being home to watching TV and watch the world go by with nothing.
Raphael De Leon 47:09
So he was okay, finally. So So I finally went to work in September of 2020. You know, went back, you know, the beginning people thought, you know, no, he’s not gonna make it. He’s like, you know, he’s, you know, they saw me struggling getting you know, getting up the steps to the to the office and all that stuff, but I probably wrong. I proved them wrong, since
Bill Gasiamis 47:36
everyone wrong so far. That’s really good. Rafa, tell me about how it’s changed your life. I know it’s changed your life physically in the way that your body works and other how has it impacted you? On a, you know, on a deeper level, how do you see life now because you had this amazing 22 day? Trip ID journey as well. So, you know, are things different? Do you see things differently now? How do you? How do you see life now? Like, what’s it about?
Raphael De Leon 48:10
Okay, to tell you the truth. I never took life for granted. Okay. I always, you know, people who know me, they know that I I’m an easygoing guy, I’m very, I care about everybody. I care about life, I care about, you know, life in general. And for me to say that I have a better perspective or another perspective in life, I would be lying because I have the same perspective.
Raphael De Leon 48:41
The only difference is that I went through some experience that really made me realize that you know, that I don’t know if you guys are religious. I was not religious. I was very spiritual. But having gone through what I went through, made me and this is the only thing that actually I can say that that changed a little bit. It made me a bigger believer.
Raphael De Leon 49:16
Okay. It did it because I did go to another place. It was real. It was not a dream. It was physical. It was it was there. You know, I felt it. I walked it. I saw this people.
Raphael De Leon 49:39
I saw things that. I don’t know if it was another dimension. I don’t remember who it was. I asked a priest because when I woke up,
Raphael De Leon 49:51
there was a priest that had been going like on a daily basis because they said that I was that wasn’t my children to die. They were waiting for me to die on a daily basis. And this priest kept going and going. And when I woke up and I told him the story, first of all, I told him the story and he will all he wasn’t all he was like, wow, where’s displays, and I go, I don’t know.
Raphael De Leon 50:14
And I described it to him. And he’s like, Oh, wow. Even asked him to look for 22 in the Bible to use, you know, numbers are very important in the Bible look for
Bill Gasiamis 50:25
is any reference
Raphael De Leon 50:28
22 is actually, when I look, when I looked it up in the Bible, it’s the number 22. Other things that signifies is how God communicates with us with a human being. Right? That’s the only thing that I gather from, you know, when I looked it up, and, but, you know, my perspective, adult life now it’s like, even though I never took it for granted, that little bit more meaningful.
Raphael De Leon 51:01
Like, you know, it’s I don’t know, it made me respect everything more. You know, and, in that, because I’m in this condition, I’m very slow, you know, physically, cognitively, I’m the same person. I never loved one grandma, who I used to be, I’m still, you know, I can still, you know, reacting, I see people with Aphasia I see people with, with other conditions after they had their stroke, and thank God, I don’t have any of that.
Bill Gasiamis 51:42
And how, so your, did you go back to your work in the same capacity as you were before as the operations manager? And how has your physical condition impacted the way you deliver on your job?
Raphael De Leon 51:58
Okay, so when I went back, you know, first of all, you know, the CEO of the company, you know, reassure me at work, you, cuz I asked him, me, if I, if I get better, can I go back to work? And he goes, Yes, by all means, we need you, we want you back. Once you get, you know, better, you know, you don’t have to worry about the job is going to be there, just get better, just wait it out, get better and go back to work.
Raphael De Leon 52:31
So when I went back to work, chain, because I was slow, and went into my office, and I was like, Oh my God, you know, how do I Oh, and then the owner, the CEO, which is my boss now, you know, he told me, Hey, you know, now, the difference is the difference now, between back then, when before you had the stroke, is now that you have a bunch of people that are going to be helping you, you’re gonna have, you’re gonna have a bunch of like, you know, people that will assist you do the labor, you know,
Raphael De Leon 53:07
And I go, okay, so, I went in the same capacity, they didn’t block anything. They were just watching me. And I’ve, I felt, you know, and one day I overheard someone saying, hey, you know, he’s not, he’s just gonna be there for a few days, and then he’s gonna leave because it’s too much. And, and I was like, you know, I didn’t want them or to know that I that I eavesdropped on their conversation. And, but I but I thought, Nah, I’m gonna show these people that I’m
Bill Gasiamis 53:42
Gonna prove them wrong as well.
Raphael De Leon 53:45
I’m gonna show them that. I’m here, then I’m back.
What about cognitive fatigue?Bill Gasiamis 53:51
What about fatigue? What about cognitive fatigue, a lot of stroke survivors do struggle with cognitive fatigue, especially, I did when I sat down in front of a computer screen for the first time after brain surgery. And that was hard and it was hard for about a year and a half, two years. So what was it like for you?
Raphael De Leon 54:10
The only fatigue I have as physical if I get in front of a computer, especially, you know, the whole time that I was in, you know, in my house, I you know, I love Excel. You know, Microsoft Excel is to me like the greatest program in the world.
Bill Gasiamis 54:29
Wow, it probably is true. There’s so many people who I know who like who love Excel and just do things. I look at Excel and I just want to go to sleep it just puts me to sleep I can deal with that kind of stuff too much cognitive effort for for me to use Excel right so I just I’ve never used that for what it’s for what it is designed to be used for.
Bill Gasiamis 54:56
And then I meet people like you who go oh my god Excel this next saw that, and I know that it’s powerful, but my God, what are learning? What a skill to learn, it’s such a hard skill to learn,
Raphael De Leon 55:09
I can draw and sketch and you know, and Excel draw, I can draw pictures I can do, I can create formulas that will, you know, draw a picture, I have created this crazy, you know, spreadsheets that they have been used, you know, I ran into the spreadsheet the other day, you know, that I created for, for an accountant, you know, for the accountants, you know, like 1516 years ago.
Raphael De Leon 55:39
And then I looked at the formulas and 16 years ago was different, you know, you have to create these crazy formulas to make, you know, I spreadsheet work. And I looked at the formula that I created back then. And I was like, Oh my God, how the hell did I create that formula? And it was so weird, and they’re still using it to the day, you know, from 16 years ago, even though there’s so many other things, so many, you know, easier things.
Raphael De Leon 56:10
And what they said, when I went back, he goes over, it makes our life a little easier, because he makes everything dummy. Dummy dummy proof, you know that I give him a spreadsheet and everything is there. They don’t have to ask me for anything.
Bill Gasiamis 56:26
So the fatigue, man, that’s good that you get no,
Raphael De Leon 56:29
I don’t have any fatigue, cognitive fatigue. Fatigue, I don’t. That’s yeah. Now physically. Yeah, no, I don’t have and I had the, what’s it called the craniotomy, I had it, I have my scar right here. What happened? Because I don’t want people to see my scar. But I guess they say the right side of my brain is completely gone.
Raphael De Leon 57:07
Like a quarter of the brain is completely gone. And, but I think I had had been using the left side of my brain my whole life, because I woke up and I remember everything, and I’m like, I love it. I would
Bill Gasiamis 57:24
love to see your scans, I would love to see your scans, if you’ve caught them. It sounds like they are worth looking at.
Raphael De Leon 57:31
And that’s my job. I’ve been meaning to ask the doctor for them. But my wife always tells me, why do you want to see that?
Bill Gasiamis 57:38
I loved I’ve loved looking at my scans, seeing where the blood was, and try and understand what happened there didn’t bother me at all. It was really was really interesting. Thank you, it was really interesting.
Raphael De Leon 57:55
What do you have? What do you do? Did you experience
Bill Gasiamis 57:59
so had a brain hemorrhage as well, near the cerebellum, on the right side from about two inches in from my ear. And I had to learn how to walk again, use my left side again, I still have the tingles and numbness and the cold sensation on my left side and the tightness in the muscles. So I still have all of the deficits that was in 2014 was surgery.
Bill Gasiamis 58:29
So yeah, it’s been a bit of a and but then I experienced, you know, a lot of cognitive fatigue, physical fatigue a lot, a lot of issues there that took it took a long time, but they got better. As I started to get better and healthier, and more physically fit, everything came back.
Bill Gasiamis 58:49
But still all my deficits are there, all the things that I feel on my left side are all steel that are still there, you know, and that’s why I’m just when the MMA is that you that you got to be. And the damage in my brain is probably the size of a golf ball. And then at the most, you know, you’re telling me, a very large percentage of your brain is damaged, then I’m thinking well, that’s, that’s what I’m saying.
Bill Gasiamis 59:19
That’s a scan, I’d love to see because I’m speaking to the man. And then I want to see, I want to see what it looks like. And that’s maybe that’s why all your doctors are amazed. You shouldn’t be around. Well my nearer
Raphael De Leon 59:32
and nearer surgeon or you know, he’s he’s the he told me he goes, You know, it’s amazing that because you’re not you were supposed to wake up, not being able to talk, work, or even reason. And here you are arguing with me. I’ll tell you another story.
Raphael De Leon 59:52
So one day I’m going he told me he calls me on the phone and he tells me Hey, I you know Usually I have my nurses call my patients to tell them good news, but your special case, so I’m calling you personally, and I go what’s up? And then he goes, Well, you know that little, and I forget the name of it, but it’s like the beginning of an aneurysm.
Raphael De Leon 1:00:18
He told me, you know, that condition that we’re looking at, and we’re, we’re going to watch for years, and I told you that we’re going to you know what, we’re gonna keep an eye on it. I go, Yeah. He goes, Oh, first of all, let me tell you that I have a colleague here because I want him. You know, he wanted to, he wanted to talk to you as well. He wanted to get to know you. He wants to know you, too. He’s amazed at your story.
Raphael De Leon 1:00:41
And do you mind if I have him on the phone? I don’t know. I don’t mind. So they were both talking to me. And then he goes, you know, that, that, that aneurysm that we’re so worried about? And I told you, we’re gonna keep an eye on it. It’s not there no more. And I wanted to give you the news myself. They will. So congratulations is not there no more so we don’t have to worry about it. And I go, Oh, that’s great.
Raphael De Leon 1:01:04
You know, I was relieved because I don’t want to go through this again, right. And then, and then he goes, Yeah, and where are you at? And I go, Oh, I’m on my way to work. Legally, what do you mean, you’re on your way to work? Yeah. Well, I’m driving. I’m going to work right now. He goes, Uh, he has a party. My fingers get that fit here. You’re driving? Like, whoa, yeah, I try to work every day.
Raphael De Leon 1:01:32
Because No, but you’re driving and talking to me. And then I go, Yeah, you know, you call me. And then he like, didn’t and then I heard him say, didn’t I tell you about this guy? Then he goes, maybe and then I’m laughing. And I feel proud. I’m like, oh, man, they’re you know, they’re praising me. And that feels good.
Bill Gasiamis 1:01:54
You should be proud. And you should be proud. Whatever. The reason is that you’re here. It’s great that you’re here. It’s great that it worked out really well. It doesn’t often work out very well for people like us, man sometimes. Look nobody, the people on them on my podcast of the survivors.
Bill Gasiamis 1:02:11
It’s the recovery after stroke, podcast. Unfortunately, a lot of people don’t survive this stuff. And that’s the reality. So this podcast is for the survivors, so that we can encourage people to get back to life, chased
Raphael De Leon 1:02:29
by by Laura, I will do anything to encourage people because some people get sick because they get depressed. Yeah. And I understand I was depressed for a few days that I couldn’t move that I you know, I couldn’t. I went back to the gym and I tried lifting weights and I couldn’t.
Raphael De Leon 1:02:50
I couldn’t even lift one pound. And you know, when I was benching I one time I bench you know, I did five repetitions of 320 pounds on the bench and oh, that I was so you know, I mean, I’m only five, eight. And people in the gym were like, Whoa, wow, this little frickin guy can lift all that way.
Raphael De Leon 1:03:16
And now I wake up and I can’t even lift my own weight. So that was depressing. Press for I was I was not depressed at all. Okay, I was depressed for about a half hour. And my my thing in my head was like, I need to get up. I need to get on my life. I cannot stay in bed. I can lay in bed. Yeah.
Raphael De Leon 1:03:46
And that’s been my, that’s been, that’s what motivates me that I want to get on with my life. I don’t want to be in a wheelchair. I don’t want to be you know, not being able to do anything. I want to fend for myself, you know. And I’m lucky I have a beautiful wife and she’s helped me through the whole process.
Raphael De Leon 1:04:14
The people that helped me out the therapists, they were great. had like the greatest therapists in the world. And they were they were funny, too. They were like, oh my god, everybody wants to help you out because you know, you go to another person and they don’t want to get out of bed.
Raphael De Leon 1:04:33
I mean, you you’re always looking at the door, you know, and waiting for us to say hey, Ralph, let’s go. And that was my, you know, that was my thing. And and, and if anybody wants to hear my story, and if I can encourage people trust me, I will go and and I see you and you look normal to me and you Look, okay,
Bill Gasiamis 1:05:02
I’m far from normal. But yeah, I do. It doesn’t look like anything is wrong with me. But that that’s one of my challenges is, when you see me, you, you see the same person that I was before all of my three brain hemorrhages and brain surgery and learning how to walk again.
Bill Gasiamis 1:05:22
So the challenge that I had was because I looked so well, I couldn’t explain to people how I was feeling. And then that was very difficult for me frustrating. And people would have bigger expectations of me, because they they don’t understand. And then it’s like, I don’t know how to get the message across yet. It’s really, really difficult.
Bill Gasiamis 1:05:45
So this morning, I woke up, my left side is hurting a lot today, I’m not sure why I didn’t sleep at all last night, that might be one of the reasons. And I don’t know. And that means that today, I’m going to be tired all day. And I’m going to be different all day. But I can’t explain that to somebody that just don’t get it.
Bill Gasiamis 1:06:09
When I used to be tired beforehand. Because I didn’t sleep, it didn’t really affect my day to day didn’t really impact me. I was just tired. But I was able to be fully functioning and fully productive and do all the things that I do. Now I can’t I can’t be productive when I haven’t had a good night’s sleep and when my left side hurts, or the whole left side hurts.
Bill Gasiamis 1:06:36
And then when you can’t see it, and I have to interact with people, then I can’t explain it to them. It’s just so hard. And it’s just it’s just one of those things. I don’t know. First trading, right? Yeah, it’s frustrating. And that’s one of the reasons for the podcast is because with a podcast, I get to speak to two people a week or one person a week, who gets me who understands me, I understand them, they understand me, it’s like my therapy.
Bill Gasiamis 1:07:06
My family, I don’t never want them to understand because there’s only one way for them to understand. So I kind of accept that. But I wish I could just get the message across just so that they could give me a break on the day. When I needed it. If I could just today’s the day I need a break because of that reason that you can’t see.
Bill Gasiamis 1:07:32
That’s bothering me that’s making me feel unwell. If I could just get that over the line easier would be fantastic. But I do what I can and they they do what they can we’ve come a long way it’s taken. You know, it’s a 10 year journey so far for me 11 years this year.
Bill Gasiamis 1:07:49
So we are we’re getting further along and I don’t do things the way I used to do them before we can’t we can’t do them the same. I can’t personally do them the same. So it’s a new approach to my day. It’s a new approach to my life. It’s a new approach to everything.
Raphael De Leon 1:08:12
So what about you? What in what way? Do you think you change that they’re having a stroke? What what what do you what do you treasure the most now or what’s more important to you now than, than before?
Bill Gasiamis 1:08:26
I used to believe I used to have bad beliefs of that I wasn’t capable of doing something or able to achieve something or that’s good for them to do that. But that’s not something that I can do. You know, I used to have that type of negative self talk. And I used to struggle to ask for help. And I didn’t, I didn’t really believe in myself.
Bill Gasiamis 1:08:48
I listened to the people who were negative in their approach to me, and I took their advice instead of the people who were positive and supportive. And it used to really make me angry and frustrated that I used to take my anger and frustration out on my family.
Bill Gasiamis 1:09:06
Usually my kids it was disguised as discipline. It was disguised as I was being disciplined and disciplining them and teaching them the correct way and all that but it wasn’t it was more anger me not knowing how to behave like a 37 year old evolved human being I was just behaving like a child you know, 18 year old child that never really grew up.
Bill Gasiamis 1:09:34
And after the first and second bleeds are really started to take notice that I might not be around. So what I need to do is an edge and make things right with the people that are important to me because I love them. I just didn’t know how to do to show love correctly.
Bill Gasiamis 1:09:54
Because I loved them and I didn’t want them thinking that dad was always an angry guy you know if he died If I died, and I didn’t want him to think that, that’s all they remembered, you know, I want him to remember better things than that. So I put a lot of things, right, apologized a lot of people.
Bill Gasiamis 1:10:12
And now I don’t know, now I sit in the struggle of not knowing how to do something. So recently, I finished the first draft of my book. And that was a year and a half of writing. And it was the hardest thing I’ve ever done. It was such a difficult thing. Because of those cognitive issues that I have, my brain gets fried really easily.
The hardest thing Raphael De Leon ever had to doBill Gasiamis 1:10:35
I have to find windows where I’m feeling really, really well. And then just sit down for as long as I can and write as much as I can. That that’s a guy who has never written more than maybe one or two essays in his life, didn’t study, didn’t do homework, or hardly set my exams, you know, actually made a lot of effort to fail at school and not do well, because I just hated it, I just couldn’t.
Bill Gasiamis 1:11:05
I’m not sure if it’s a learning. If it’s a learning thing, I don’t know what it was, but I could not sit in a classroom and obtain information from my teachers, and from my books and absorb it, and actually do anything with it. I have other ways of learning.
Bill Gasiamis 1:11:21
So YouTube, for me is a godsend, you know, listening to books instead of reading books is far better for me because I can’t the pages off the getting the pages, the words off the pages, and into my brain is really hard, I’ve got to often go back and double read and triple read that page and trying to absorb that information.
Bill Gasiamis 1:11:48
So even though I have all of those challenges, some of them are in my own mind, some of them I’ve created, who knows how I got to be that way. But even though that was that I don’t, it doesn’t bother me now that something is hard and difficult. I’ll sit through I’ll find a way I’ll ever commit. And the book I started writing in COVID, locked down.
Bill Gasiamis 1:12:13
In Australia, we had so many of the men in Melbourne, we were locked down for two years, properly locked down. I started writing it as a thing, something to do like you, I can’t be at home, all day, every day for months after month after month, which is what we were and not do anything. So I thought I’m gonna write a book.
Bill Gasiamis 1:12:35
And when we got back to work, I think we finally got back to work. All the lockdowns ended in September 2021, then the book started to take a backseat. And I started trying to find time on the weekend to write it. But it was always on my mind, I’ve come so far, I’ve done seven out of 10 chapters, you know, I’ve got to do the next one, I’m going to do the next one. And I’m going to do the next one. And it was never, it never left my mind.
Bill Gasiamis 1:13:10
The hardest thing I’ve ever had to do. For the first time ever, it was always on my mind that I have to do this, I can’t not do it. So it’s just that I’ve got this opportunity to be alive still. And I’ve got the support to write the books, I had a book coach, I had encouragement.
Bill Gasiamis 1:13:29
I knew the book chapters, I had people coming out of everywhere telling me how telling me that they were happy to support me, I wasn’t going to let the opportunity go, I was going to definitely put something in writing and get it out, you know. And what was also interesting was, the working title of the book is stroke, the unexpected way that a stroke became the best thing that ever happened to me.
Bill Gasiamis 1:13:56
And it’s clear that it is because I have a podcast where I talk to people around the world. You know, we get nearly six and a half 1000 downloads a month. We get feedback from people all the time who telling me why the podcast is necessary and how it’s helping them. I’m coaching people to overcome some of the challenges that they have with stroke. I mean, you know, there’s no, nothing bad has come out of this stroke.
Bill Gasiamis 1:14:28
If I with my body. Most of the days are days where I can manage and I can cope and I can overcome the pain and the numbness and all that kind of stuff, you know, so it’s all good. So when, when the opportunity comes to do something that I just take it, I just do it whereas before I would tell myself, it’s not for you, Bill, you can’t do this.
Bill Gasiamis 1:14:50
It’s for other people to write books. You’re not a book writer. I never used to be a podcaster either, but here I am. I’m a podcast and you know, so that’s kind of how my life changes my My perspective is completely different. And now I just go after everything, I just don’t really care how long it’s gonna take or what the obstacles are.
Bill Gasiamis 1:15:10
I’ve learned that the obstacles are the way to the solution. But once you reach an obstacle, that’s the path you must take, you must overcome that obstacle and keep going forward, you know. And what was interesting was when I asked the people on Instagram, my Instagram, recovery after stroke, has got five and a half 1000 followers. So when I asked them, Is there other people that tell me strokes, the best thing that ever happened to them?
Bill Gasiamis 1:15:39
You know, people put their hand up and said, Yeah, that’s me. And me, and me and me. So when I interviewed them, to find out what the things were, that we had in common, how did we get to say that what was similar about that? The 10 chapters came up, I saw that there was at least 10 common things that they did, which is what I did.
Bill Gasiamis 1:16:03
And those those things became the chapters. So how can you not write that book, people need to know that many people are early on in their journey, and they might not appreciate that. It’s shit. It’s hard. It’s challenging. It’s changed your life. It’s taken stuff from you. It’s done all these things.
Bill Gasiamis 1:16:25
But maybe, maybe down the road, maybe we can look back on it. And we can say that we’ve had some post traumatic growth, instead of post traumatic stress, instead of depression, instead of all that stuff, maybe we can look back and go, even though it took all this stuff, it still gave me all have this other other stuff.
Bill Gasiamis 1:16:51
You know, so I’m hoping that that’s what it’s going to inspire people to think to think that. Let’s focus on the positives. What else we can get out of that. I always think about Stephen Hawking, man, Stephen Hawking, that physicist, you know, he had motor neurons disease or something like that.
Bill Gasiamis 1:17:09
And from the his mid 30s, he wasn’t able to move any part of his body and do anything. And he still became one of the world’s greatest physicists. Yeah. And he’s written books. And he’s like, the most amazing person that we ever we’ve ever heard about that made movies about him. I always think about that guy.
Bill Gasiamis 1:17:29
And then I’m wondering if if stroke survivors just look at what Stephen Hawking was able to achieve, and they achieved just 1/100 of what he achieved. It will be an amazing story.
Raphael De Leon 1:17:44
Yeah, no, I you know, and like I said, you know, we struggle, you and I and everyone has had a stroke with struggle, but that it is just a struggle. It’s, we’re alive. Which you should keep going. You know, feeling sorry about yourself is not gonna take you anywhere. It’s not gonna leave you anywhere. Yeah, you know, it’s life needs to go on.
Bill Gasiamis 1:18:16
And you get to enemy alive once that that’s the one thing that I really learned. Rafa, it’s it’s only going to be one time I’m going to be on this planet, like this now, so you know what,
Raphael De Leon 1:18:28
exactly, you know, what the hell? That was just gonna say that to you. We only get one chance at this. Yeah, that’s it. And you know, one of the things that I, I mean, I always watch the Discovery Channel, the older Learning Channel documentaries. I mean, I’m, I was a nerd since I was a little kid, right.
Raphael De Leon 1:18:53
But now with the new telescope, you know, the pictures of the universe and how big the universe is, and how meaningful it is, you know, even a split second in the universe, as small as we are. Its second is very meaningful. Whether you’re in the universe, whether you’re on Earth, or whether you’re in a different dimension, you know, but every second counts.
Bill Gasiamis 1:19:24
It could be meaningful, and it could be deeply meaningful. You know, I’ve had people on here who have aphasia, and they can hardly talk, but they still came on my podcast. It’s technically having somebody who has aphasia on a podcast is not the right approach, because it’s a talking medium. What are you supposed to do with somebody who can’t talk on a podcast, but that’s exactly.
Raphael De Leon 1:19:52
You don’t even know what kind of effort they’re trying to communicate with you. And then they’re calling things different, you know? So, I met a gentleman with a aphasia at a Starbucks. And he was trying to tell me, you know, I gathered just maybe 80% of what he was trying to tell me. He was so happy to see me.
Raphael De Leon 1:20:14
And we had the same, you know, condition. And he was struggling on the left. And he saw me in any waved at me, he came, He hugged me. And then he goes, did you have your stroke? And I told him, and that’s about a year after my stroke, and he said that he had gotten his stroke 15 years before.
Raphael De Leon 1:20:37
And then he was so happy to see me. And then, you know, we kind of like, I teared up a little bit he did to kind of cried, and, we were, he’s still my friend, and, and I think Facebook and Instagram, and we follow each other, we make fun of each other. And I know, and then he sends me this text that I don’t know what he’s saying.
Raphael De Leon 1:21:00
But you know, but I was, you know, send them like Smiley’s that I know, he’s trying to tell me something. And
Bill Gasiamis 1:21:08
it’s awesome. That’s exactly. And that’s it. That’s my point, you know, that’s, you have a podcast and have somebody who has aphasia who can’t talk, or communicate the way they used to. That’s the perfect person to have on a podcast, I absolutely love it.
Bill Gasiamis 1:21:22
I mean, the fact that we’re just gonna have people on who can speak clearly, and all that is ridiculous. Everybody needs to be on the podcast, because that’s the whole point of it, the whole point of it is to give people a platform, and to allow them to express themselves and to find a way to express themselves, which is different from the majority of us.
Bill Gasiamis 1:21:45
But it’s, even if it’s unique to them, it’s still what you said, it’s still important, it’s still impactful, it still has a lot of deep, meaning it’s relevant. It’s necessary, you know, so it’s like, that’s, that’s, that’s kind of indescribable. That’s the ink that lights me up, to be able to be that guy where somebody had decided to have the courage to overcome their aphasia.
Bill Gasiamis 1:22:17
And to come onto my podcast to do that. And it’s like, fantastic, man. That’s brilliant. I love it. Can’t I can’t get over that just really feels my heart to know that that’s a possibility.
Bill Gasiamis 1:22:30
Now, for people with aphasia, you know, whereas before, all this internet stuff, zoom, and before we couldn’t connect, you and I would never have met each other. I mean, it’s the best time to be on the planet. I know there’s stuff going wrong, but there always has been, but it’s never been a better time to be on the planet.
Raphael De Leon 1:22:47
It. Yes, I totally agree. Where are you from? What part of the world are you in?
Bill Gasiamis 1:22:54
I’m in Melbourne in Australia. Awesome. When you were
Raphael De Leon 1:22:59
my I have an uncle who lives in Queensland. Oh, yeah. Yeah.
Bill Gasiamis 1:23:04
Maybe that’s why you were thinking that you were in Australia when you were when you won’t
Raphael De Leon 1:23:09
tell you what one of the places that are that I went to during my coma? Was that Australia? I thought it was in Australia somewhere. Yeah. Yeah. And I’m telling you, I was there for months. And I walked the streets of LA then I was living then it comes and goes that I remember things. I was living in a trailer in the wilderness, and there was a river and then it was Australia. And I was like, wow, this is who knows me?
Bill Gasiamis 1:23:43
Doesn’t know. Maybe we’re everywhere. You’re everywhere.
Raphael De Leon 1:23:46
You know, the mind is something beautiful. You know, we create these things with our in our head. And I guess I was entertaining myself while I was in a coma knows.
Bill Gasiamis 1:23:58
Perfect, Rafa man, I really appreciate you connecting and coming on the podcast. I love your story. It’s an amazing story. I’m so glad that you proved everybody wrong, and they’re gonna keep doing that. And thanks so much for being on the podcast.
Raphael De Leon 1:24:16
Thank you. No, thank you for having me. And good job. You’re doing a great deed.
Bill Gasiamis 1:24:21
Thanks for joining us on today’s episodes. To learn more about my guests, including links to their social media and other pages and to download a full transcript of the entire interview. Please go to recoveryafterstroke.com/episodes.
Bill Gasiamis 1:24:35
If you’d like to try out the course five foods to avoid after stroke, go to recoveryafterstroke.com/courses and get on board now. If you would like to support this podcast, the best way to do it is to leave a five star review and a few words about what the show means to you on iTunes and Spotify.
Bill Gasiamis 1:24:52
If you’re watching on YouTube, please comment below the video, like the episode and to get future episodes hit The Notifications Bell and subscribe to the show. If you are a stroke survivor with a story to share about your experience, come and join me on the show.
Bill Gasiamis 1:25:09
The interviews are not scripted, you do not have to plan for them all you need to do to qualify his be a stroke survivor, or care for someone who is a stroke survivor or you’re one of the fabulous people that help stroke survivors go to recoveryafterstroke.com/contact fill out the contact form and as soon as I receive your request, I will respond with more details on how you can choose a time that works for me and you to meet over zoom.
Bill Gasiamis 1:25:34
Thanks again for being here and listening. I really appreciate you see you on the next episode.
Intro 1:25:38
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals opinions and treatment protocols discussed during any podcast or the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed all content on this website at any length blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis, the content is intended to complement your medical treatment and support healing.
Intro 1:26:12
It is not intended to be a substitute for professional medical advice and should not be relied on as health advice the information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or is a substitute for the advice of a health professional.
Intro 1:26:33
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Intro 1:26:59
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Liam Bonar shares his journey of recovery after experiencing a hemorrhagic stroke at the age of 24 due to a cavernoma. In this inspiring episode, Liam emphasizes the importance of finding perspective when facing difficult situations and not worrying about things that are not helpful or useful.
00:56 Introduction
01:28 Liam Bonar’s hemorrhagic stroke
09:46 The five foods to avoid after a stroke
16:31 The process to get to the hospital
20:35 Liam Bonar had a cavernoma
36:50 What happens when the worst happens
46:36 Getting back to work after a stroke
51:51 The importance of having a network to support your recovery
58:47 Learning how to be more aware of his body
1:05:47 The importance of being present as a father
1:15:32 How art is a development device
1:26:54 The importance of having a creative outlet in recovery
Liam Bonar 0:00
What happens when the worst happens? You know, and then the worst does happen, So actually, you just have to go on with it really. I mean, that’s another thing, there’s no point worrying about that stuff. You know, there’s just no point, it’s not helpful. It’s not useful. Yeah, put it in perspective.
Liam Bonar 0:20
And I’ve kind of mentioned a few times over the years to people, they always kind of look at me, and I’ve heard a few times on your podcast that people say in it, but the brain injury and I talk about it as an injury because that’s the lens I’ve always going to try to look at it. It’s the best thing that ever happened to me.
Intro 0:44
This is the recovery after stroke podcast. With Bill Gasiamis, helping you navigate recovery after stroke.
Introduction – Liam Bonar
Bill Gasiamis 0:56
Hello, and welcome once again to the Recovery After Stroke Podcast. This is episode 242. And my guest today is Liam Bonar, who experienced a hemorrhagic stroke due to a cavernoma when he was aged 24. Liam Bonar, welcome to the podcast.
Liam Bonar 1:14
Lovely to be with you. Thanks for having me.
Bill Gasiamis 1:18
Absolute pleasure. Can I just ask you, before we get stuck into the interview, I’d love to know what was it that made you reach out to be on the podcast?
Liam Bonar had a hemorrhagic StrokeLiam Bonar 1:28
That’s really good question, actually. So it’s it’s nine years almost to the day since I had my brain hemorrhage. And actually, I’ve been thinking about this quite a lot recently, because I’ve recently become a dad. So I’m 34 years old now. I was 25 when I had the brain hemorrhage.
Liam Bonar 1:51
And we’re currently going through a bit of, I suppose research, and just finding out what the risks are for my son. So it’s kind of brought everything back into really sharp focus, I suppose.
Bill Gasiamis 2:09
Interesting children do that. What was it like before children? Just yourself don’t really have any one to really be concerned about or worried about? How did you go about life?
Liam Bonar 2:23
I think yeah, I mean, I think that’s probably quite a good way to describe it. I mean, I was obviously I was young, when I had the stroke. You know, young and invincible, and you think that nothing’s ever gonna affect you, I suppose. Certainly, you don’t think about stroke or the risks of stroke.
Liam Bonar 2:45
So it kind of crept up on me, I suppose, out of nowhere. And I think just the journey that I suppose the recovery years and months and years afterwards, it’s really, it’s really been one of those things where I’ve learned to manage my symptoms and move on with them and make peace with them. I suppose and just live a happy and fulfilled life.
Liam Bonar 3:12
And that really is my, I suppose my primary driver for coming on here really is, I mean, I don’t have an agenda, certainly, but you know, if I can kind of share my story, and, you know, maybe help somebody that’s less then, you know, job done. I think that’s, that’s really all you can do, really.
Bill Gasiamis 3:33
That’s a really big agenda. Believe it sounds like it’s not an agenda. And I’m not saying that an agenda is a bad thing. What I’m saying is the amount of people that reach out to me and say, that podcast interview that person that thing it’s just sharing of a story. And to me, the stories are also similar, there’s not much of a difference, you know, something happened.
Bill Gasiamis 4:02
I had to overcome a lot of stuff, and I’m back on to life, but it’s not appropriate to break it down to just those things, something happened, and I had to overcome it. And then I went on with life. There is a lot of nuance in that story when you get to the other side, and then it still remains nuanced, because it’s your specific journey.
Bill Gasiamis 4:27
The thing about it is your specific journey has a lot of things in it that other people benefit from learning about and hearing about. And that’s the whole reason for the podcast. That’s why there’s 240 episodes and people are approaching me to be on the show, because they got a sense of what it was like to accidentally discover it and then and go, Oh my gosh, I’m not alone.
Bill Gasiamis 4:52
I’m not the only person that went through that. And then they felt the amazing gift of giving, and that gift of giving, is seems like it’s about you seems like it’s you’re doing it for your benefit, which you are, which is great, but everyone else benefits as well. And that’s the amazing thing.
Bill Gasiamis 5:12
That’s why I asked because I want to encourage people to come on the show, because the gift of being on the show is one that you receive, but it’s also one that you give to other people you’re never going to meet and whose life you’re going to change for the better.
Liam Bonar 5:27
Absolutely, absolutely. I totally agree with all of that. And I think you’ve had, you know, firstly, you know, well done for doing what you’re doing. And you’ve had some really, you know, inspirational people on the show that there’s been some great stories, absolutely.
Liam Bonar 5:45
You know, one that I was listening to recently, Michael, you know, I kind of want to say to him as well, you’re stuck at it, it definitely gets better. And it’s that kind of thing. You know, it’s it’s, you know, it can only help, you know, it can only be a good thing.
Liam Bonar 6:01
So, nine years down the line, you know, I think actually been able to take a step back and actually look at it, you know, holistically and objectively, you know, I totally agree, as you could reduce it down to, impact resolution, you know, if you look at it that way, and there will be absolutely similarities.
Liam Bonar 6:23
And, you know, I suppose, pretty much it’s the same story, time and time again, you know, you have to make peace with it.
Bill Gasiamis 6:33
Absolutely, you have to mean it’s not going to work otherwise, not only is our story, the same, so is somebody who had a stroke, somebody so is the same, somebody who’s had a heart attack, a cancer survivor, traffic injury, from a car collision or something like that. All the stories are the same.
Bill Gasiamis 6:52
It’s somebody goes through something, it tests you, you have to learn new skills, you have to adjust, you have to adapt, and then you have to move on. And it’s relevant to everybody, this particular podcast, it happens to be called recovery after stroke podcast, so that my say that I’m able to reach my specific viewers, listeners and audience, that’s the purpose of it.
Bill Gasiamis 7:18
I did call it something else before it was the recovery after stroke podcast, and it didn’t quite resonate with anybody because it was so broad. And by the time I found my audience, you know, 20 or 30 episodes in, I really started to feel like I wasn’t doing the time that I was putting in any justice.
Bill Gasiamis 7:40
And I wasn’t able to tell a specific person, hey, this podcast is for you. There’s a whole bunch of people that want to listen to us, tell our story caregivers, healthcare professionals, stroke survivors, all the different kinds of people that have been injured by stroke. And it’s and that’s the one that kind of started making people listen, respond, want to be on, etc.
Bill Gasiamis 8:09
So this is what I love about the fact that it’s called the recovery of trek podcast. It’s it’s niched, to the point where, if you’re a stroke survivor, and you hear about this podcast using it for you immediately. That being said, the lessons are universal. They really are.
Liam Bonar 8:27
Yeah, that’s fantastic. I think I think one of the one of the major things for me, you know, and you’ll be the same because I think your timeline is pretty similar. I think you’re 10 years on, is that right?
Bill Gasiamis 8:39
Yeah.
Liam Bonar 8:41
So I mean, go back 10 years, and there really wasn’t anything like this. I mean, I remember distinctly remember, you know, looking around to the kind of waiting rooms, and you know, there was there was nobody my age certainly that was a really kind of alienating experience actually, it was terrifying, you know.
Liam Bonar 9:05
And, you know, that’s not to say that I’m unique because, you know, I’m I know I’m very aware that no, there’s there’s plenty of people, you know, in my shoes and have been in my shoes, but I think to, to kind of be the only person under the age of 50 say in when are in the national hospital or in the hospital board, hyper acute stroke in UCLH in one day, you know, it kind of brings it brings it home, you know.
The five foods to avoid after a strokeBill Gasiamis 9:37
just a quick break and we’ll be right back to the interview. As a stroke survivor, I understand the difficulties of finding the right information about post-stroke nutrition. That’s why I developed the course five foods to avoid after stroke. While most people are talking about what to eat after a stroke to support brain health, and recovery, very few are talking about what you should avoid eating after a stroke.
Bill Gasiamis 10:01
If you want to support your brain to heal, are curious about the five foods that may make matters worse when you consume them, then you may benefit from this course. In the fun five series of interviews, you’ll hear about what foods not to eat after a stroke. But most importantly, why not.
Bill Gasiamis 10:19
From a qualified nutritionist Stacy Turner and performance coach Matthias Turner in the more than five hours of interviews, we discuss the five common foods that cause inflammation in the body and brain and how they could interfere with healing and how they may make fatigue worse, for just $49.
Bill Gasiamis 10:37
This five part series of more than five hours of interviews with full PDF transcripts for download mp3 is for download, and videos will give you everything that you need to know about the five foods to avoid and why the modules include eight reasons to quit sugar after a stroke. seven reasons to quit caffeine after a stroke, eight reasons to quit gluten after a stroke, six reasons to quit dairy after a stroke, and six reasons to quit alcohol after a stroke.
Bill Gasiamis 11:09
And probably that is one of the most important things that you have to and should quit after a stroke. It’s interfering with your recovery, visit recoveryafterstroke.com/courses. For this and other specifically designed short and easy to understand courses that are made by a stroke survivor for stroke survivors.
Bill Gasiamis 11:31
Once again, you’ll get more than five hours of content, all audio is available to download in mp3 format for listening on the go full transcript of all the content to take notes on or read instead of listened to presented by a stroke survivor four stroke survivors. also presented by a trained nutritionist and performance coach, you will also get 24 hours of access, lifetime access to courses purchased.
Bill Gasiamis 11:57
And you’ll be able to interact with yours truly, in the comments section. Go to recoveryafterstroke.com/courses to check them out now. Yeah, and what happened to you is rare brain hemorrhages are rare. And you know what’s even more rare people surviving them, that’s even more rare. So tell me a little bit about what happened to you. How’d you get to be in the hospital?
Liam Bonar 12:23
So, so, but like I said, I’m 34 years old now. So nine years ago would have been 25 massage the 60s before my 26th birthday. So I had just had a normal weekend, you know, with friends, I think we were a barbecue. Can uh went to bed didn’t really think too much of it, you know, had a couple of drinks, nothing, nothing excessive.
Liam Bonar 12:50
And all I really remember that morning is waking up on the couch in the living room. And it was in the middle of summer scorching hot, not hot by Australian standards, but by London standards is there 34 degrees Celsius or something like that, that are
Bill Gasiamis 13:11
just getting started.
Liam Bonar 13:13
Yeah, exactly. But I distinctly remember lying on the coach and just been really confused. And there’ll be enough fly like a blue ball flying around the ceiling, and it kept appearing and disappearing. And then it would appear, you know, the other side of the room and then disappear. And it was just such a strange experience. But of course, I didn’t realize that time because I was completely delirious.
Liam Bonar 13:41
I didn’t realize at the time that I had central field visual loss. So I mean, I I’ve been you know, almost entirely blind in the center of my second my vision. So that was the first symptom, I suppose that kind of became apparent. I then I don’t know how he did this. But I then dragged myself in the work. Walked, you know, walked into work, which is, you know, the half hour walk, sat down at the computer screen.
Liam Bonar 14:12
And they couldn’t log into the computer couldn’t work. The mouse couldn’t work, the keyboard couldn’t you know, but because I was so confused, I still I just couldn’t make sense of, you know, you know, to me, it was just like, well, that’s strange. You know, like, I can’t log in and the person I was working with at the time it was a really big design agency I was working so I was freelancing was kind of like our contract I suppose.
Liam Bonar 14:38
The person that I was that was responsible for me at the time kind of said you know you Okay, thank you should maybe go home like you know, you don’t look well kind of thing. And from there, you know when I’ve saved funds my mom because I just didn’t know what to do. I was so confused perfectly. And exactly, and she basically said, you know, I think she suspected it was maybe having like a visual visual migraine or something like that.
Liam Bonar 15:08
And then really wisely kind of said, you know, why don’t you go to the optician. So, to myself, the optician, the kind of looked in my eyes and said, Your eyes are absolutely fine. And this was this was kind of the moment where things start to fall into place, really. So he looked terrified, wrote 100 A letter sealed it put me in a taxi straight to the hospital.
Liam Bonar 15:39
I said, give this, you know, to the person on the desk, when you get in there spoke to the taxi driver meet with the taxi driver kinda didn’t want an ambulance put me straight in a taxi, because it was one of those. So that was the Eye Hospital, which was really close by so it was kind of an easy thing, but they are they are part of UCLH as well.
Liam Bonar 16:00
So which has you know, is actually probably the best place you could be arguably for for, for brain hemorrhage and London to the UK. So, you know, from the point of handing that over, and the person, you know, opening it and reading, which must have been a strange experience for them. You know, I was quite quickly whisked off to the, to the night cricket sharpener, and then the rest is history.
The process to get to the hospitalBill Gasiamis 16:31
Yeah, it’s really interesting to hear that your process to get to hospitals quite rapid, that’s awesome. Most people fluff around and take the time. And because you’re having a stroke, you can’t work out what the right thing to do is and you make all these excuses, and you justify everything. And this particular doctor has done an amazing job, when you’ve gotten there to get your eyes checked, they’ve gone.
Bill Gasiamis 17:04
It’s definitely it’s definitely not your eyes, therefore it must be in your illogical straight into a cab. And immediately to the hospital. So when you’re in the hospital, you don’t really know what’s happening yet you just know that it’s pretty serious. This guy was concerned. So you’re in hospital. And then they they came back to you after a little while with the results with the news? How did they break it to you?
Liam Bonar 17:30
So I think it was pretty obvious for them, because, you know, they must have seen, you know, similar types of admission. I would imagine. I think the moment that it started to become really obvious to me was when I was taken down for my second MRI, because at this point, they still thought it was bleeding. Taken down, I think it was like two o’clock in the morning or something by this point, you know, there was nobody else about basically.
Liam Bonar 18:00
So it was me and me and a nurse. And she was gonna feel me down with the porter to be scanned, and she just burst into tears. She just looked at me and burst into tears. Fast forward, you know, so my wife. No. So I’ve not been married before my wife, my wife used to work in stroke units, basically, she’s a nurse.
Liam Bonar 18:26
So and she kind of said, well, listen, that only happens when they’re absolutely convinced that you’re going to die, basically, you know, they tend to know that know the trajectory of things. So, you know, it’s one it’s one of these situations that you know, other time, you know, you just think oh my god, you know, this must be serious.
Liam Bonar 18:46
But yeah, I mean, from there, you know, it was it was very much a case of, you know, scans, lots of MRIs that day. I think I had six MRIs or something when I was in there, because of from my understanding the just what to be absolutely sure that well, they damaged it correctly, but also that it wasn’t still bleeding.
Liam Bonar 19:09
And, you know, thankfully, you know, at Cana sort itself out, I suppose and stop bleeding. And yeah, I kind of see it as a bit of a miracle really, because I think you know, it’s one of these ones, you know, very lucky to work it survive it in the first place. also lucky to kind of feel nine years later, you know, be you know, have almost no symptoms or repercussion. So yeah, I’m so thankful and appreciative.
Bill Gasiamis 19:42
Fair enough. So while we were while you were chatting, I was. I just did a search for interest cerebral brain hemorrhage, which is what you’ve had on Google. I’m laughing because I’m nervous. I don’t know why I’m nervous. Interest cerebral brain hemorrhages.
Bill Gasiamis 19:59
bleeding into the brain tissue is a second most common cause of stroke 50 to 30% of strokes in fact, and the most deadly blood vessels carry blood to the blood vessels carry blood to and from the brain, arteries or veins can rupture either from abnormal pressure or abnormal development or trauma. Did you have either abnormal pressure, like blood pressure, abnormal development, like maldeveloped blood vessel or trauma?
Liam Bonar had a cavernomaLiam Bonar 20:35
Yeah, so my condition, I suppose. So I didn’t know this, but I was born with a cavernoma. So that’s an odd clustering of vains basically, the way it’s commonly described as the shape like a rasberry essentially veins that, you know, would otherwise be straight, you know, they kind of cluster together and it causes this weird lump, I suppose. It does end the word oma, which I believe everything else, oma is a tumor that’s not cancerous.
Liam Bonar 21:15
They’re not the were believed to grow, although, I believe that kind of the thinking on that, but possibly changed in that time. But yeah, you know, the story I was kind of told by the neurologist was, if you have a bleed via cavernoma, the longer that goes on, the less likely it is to happen.
Liam Bonar 21:41
So it gets less and less likely every year. So the first year is kind of the danger zone, I suppose once you’re over that, it’s less and less likely, less and less likely. So I was always quite, you know, that almost gave me kind of goals.
Liam Bonar 21:57
And, you know, something taken I look forward to it’s like, well, you know, like, I’m still here, you know, during the recovery, and everything else is like, it can only get easier from here. And that was something I think that kind of took through, I suppose the whole your whole journey, really.
Bill Gasiamis 22:11
With the cavernoma to remove it, did they do brain surgery?
Liam Bonar 22:16
No, it was inoperable because it’s it’s so deep, right? kind of behind the optic nerve. So basically, when the bleed happened the blood settled on optic nerve, which caused brain damage which then caused visual loss. So it was right in amongst in a central part, I suppose.
Liam Bonar 22:43
So they basically said, you know, the only option to the only option here of intervention is gamma ray, which radiation, so really focused rays of radiation. But the basically decided that, that wouldn’t be appropriate to kind of just see how that goes basically, and kind of just manage it from there.
Bill Gasiamis 23:09
How often do you go back for checkups? Or does that not happen anymore?
Liam Bonar 23:14
It doesn’t happen anymore. And it was sets monthly then went to yearly. And then approximately three years ago, four years ago, maybe we decided my my neurologist, and I kind of decided that, to left the stress of it to basically just not not do it again. And basically I’ll go back, I’ll get in touch with them if if you know, symptoms return or anything.
Liam Bonar 23:43
So it’s kind of you know, it’s kind of a bit of a thumbs up, I’ve taken that as a bit of a thumbs up to say, you know, go on and go on with your life. Now, you know, this doesn’t have to have to wear you down. No, you know, you can you don’t have to think about this, and it genuinely isn’t something I think about everyday.
Liam Bonar 24:03
No, you know, I still have the visual loss, albeit much, much, much reduced. You know, the thing I was told at the time was, you know, this seems like this will never go away, but your brain has an incredible ability to heal. And I just, I took it in but I just didn’t believe it. You know, I just didn’t think you know, you’re not going to heal like I’m not Spider Man or something and I’m not going to heal suddenly.
Liam Bonar 24:32
My vision again, you know, but your brain compensates, you know, the area that I can’t see out of, you know, I I still when I go to the optician you know, they tell me I’ve got 2020 vision, you know, I can still drive a car, you know, I can do all these things. I can drive more bike, you know. Arguably that’s more dangerous.
Liam Bonar 24:56
But yeah, it’s it’s one of these things, you know, it’s, you know the things You’re told that the time, you know, actually what the mark and a true and I think actually, you know, actually being able to see somebody that’s come out the other end and say, you know that that was true, you know, your brain can heal and it can do amazing things that you just didn’t think it was it was capable of doing. It’s like On another note, it’s amazing.
Bill Gasiamis 25:24
It is there’s another thing that happens is, you know, if people can heal emotionally. And then perhaps if you heal emotionally that might heal your mental state. And even if your physical state isn’t, quote, unquote, normal, but you can heal, deeply heal, where it really truly matters, like in the heart, and in the and in in the mind, you achieve a level of recovery, that’s very different to what people talk about when they talk about recovery.
Bill Gasiamis 26:01
You know, you damage your toe, you go to the hospital, they stitch it up for you, or they tell you it’s broken, or whatever they tell you. And they say it’s six weeks, and in six weeks, you’ll be fine. But it’s such a minor thing in comparison to your entire body, you never give it a second thought you just trust them, you believe them, and you’re weary of the corner of the couch next time, it’s no big deal.
Bill Gasiamis 26:24
And you might even smash it again on the couch. If you’re like me, and you don’t learn from the first incident of smashing your foot on the cow on the couch. So it’s like, Okay, that’s pretty inconsequential. I can just cop that move on. Strokes, not inconsequential. It makes you think about things you never thought about before you think about your mortality, you think about how that’s going to impact other people.
Bill Gasiamis 26:50
You think about your life, you know, for me, My life flashed by me. And it was, oh my gosh, all I realized was that past me wasn’t the best kind of guy. Now, you wouldn’t know it by meeting me, you and I, we would have had the same conversation, I would have appeared the same. But my behavior was you’ll what was it? How do I describe it? It was as a 37 year old, I was behaving often like an 18 year old.
Bill Gasiamis 27:21
So there was an immaturity that wasn’t there, even though I was mature in years. And what the strike did is say to me, Listen, you better sort this stuff out. Because if you’re not here, you’re going to be a bad example of how somebody at 37 should behave when things go wrong, or when things get tough or whatever.
Bill Gasiamis 27:44
So had, I had that opportunity to go well, I’m going to work on myself, and I’m going to heal a few things. So that with my children, especially, so that if I do finish up after, after this next few months, or whatever, at least what I’ve done is made some things right, and then I can move on. If you’ve
Intro 28:07
had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, and doctors will explain things.
Intro 28:25
But obviously, you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called seven questions to ask your doctor about your stroke.
Intro 28:50
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery, head to the website now, recoveryafterstroke.com and download the guide. It’s free.
Bill Gasiamis 29:10
And then what that did inadvertently without me realizing was because I had a long time at home on my own because I had, you know nearly three years of the journey before I got to brain surgery. I had a lot of time to do personal development work, to go inward to search to discover.
Bill Gasiamis 29:33
And what I found was that the healing that I was doing was emotional healing. It was healing traumas from the past minor or major it doesn’t matter. It was healing them putting them to rest stopping me from dragging them forward. You know with my brother. Believe it or not. I was at 37 Behaving like we did when we were young kids hadn’t realized that I was still playing this same role in my relationship with my brother that I did when I was a young kid.
Bill Gasiamis 30:04
And at 37. It’s just not appropriate. There’s no space for us behaving like pre teenagers, or like teenagers, and not. And realizing that and changing my behavior and healing that part of our relationship. And stopping being angry at him all the time for being himself really helped me heal.
Bill Gasiamis 30:26
I think that continued through the next two or three years as I got to brain surgery. And then, by the time I got to brain surgery, the only thing I was dealing with was brain surgery. I let go of so much of the rubbish from the past, I just let it all go. And now I wasn’t complicating my recovery with dealing with the coming together of my past, and my present serious stroke issues.
Bill Gasiamis 30:56
And my forthcoming surgery, I wasn’t dealing with all those things together. And it made so much more space for just dealing with stroke.
Bill Gasiamis 31:06
So dealt with a stroke, wake up, can’t walk, have to learn how to walk again, the only thing I was focusing on was learning how to walk again, learning how to use my left arm again, there was no need for me to be emotionally torn, and then behaving like that pre teenage kid that didn’t have any resources to support himself and just act it out. I stopped doing that. And now I was behaving like a real adult, right.
Bill Gasiamis 31:35
So the whole, the whole journey of healing, I didn’t realize from regret, it came from regret that if I’ve fallen off the perch, these guys are going to think I was an idiot. And then, and then when when I when I worked on resolving that stuff I healed and my stroke recovery wasn’t I didn’t in my mind, it was a different thing than what it started out as.
Bill Gasiamis 32:05
Yeah, there was a physical recovery. And even though I didn’t get all my physical parts back, my left side still numb, I still have balance issues. The cold still bothers me on the left side, way more than the right side. All these things that happened that I still live with. It’s not emotionally traumatic anymore.
Bill Gasiamis 32:32
It doesn’t traumatize me or re traumatize me. So it just is it’s just something that’s different. And therefore, life is less hard. Even though it’s physically challenging. It’s not hard.
Liam Bonar 32:49
Yeah, that totally resonates with me as well. I think it certainly brings everything into really sharp relief, sharp focus. For me, it gave me tremendous perspective. You know, I kind of know that there was a couple of things. So So for me, I think the so I’m a designer, a graphic designer, that that’s my, my job.
Liam Bonar 33:13
And I was almost obsessed with becoming the best graphic designer, you know, my job meant the world to me, and it still does, you know, I’m a business owner, and I run my own my own studio. But it was unhealthy. You know, it was a it was an unhealthy competition with myself, you know, I can I would come home, you know, I was working in really good studios, I was coming home late at night. And then I was doing jobs on the side.
Liam Bonar 33:43
You know, it was it was unhealthy. And I think there’s a certain level of you, you’ve got to do what you’ve got to do to, you know, when when you’re young and all that kind of stuff. But yeah, I think certainly having hemorrhage, you know, it put all that stuff in perspective, and I kind of just took a step back, step back and thought, you know, what am I doing?
Liam Bonar 34:09
With my time, you know, you know, if you may not have that much time, really. And that question itself, you know, is a scary question to ask yourself, but But yeah, I mean, do you really want to be regarded as you know, the best you know, the best designer, but it’s not the most important thing? It really isn’t. I’d rather be you know, a good son a good friend. No good dad, you know, that’s the stuff that matters. That’s the stuff that I think about, you know, now.
Bill Gasiamis 34:40
Being the best is such a myth, right, because it’s not measurable. Firstly, you cannot measure who’s the best at designing. It’s such a silly thing to aspire to. That being said when you’re young and dumb like we were once were, well, you do the best you can with the resources you have available to you.
Bill Gasiamis 35:01
And when you’re young and dumb, it’s like, the only resource you have is why if I want to succeed in this industry, I need to be the best. So I’m gonna go after it, it’s better than going, I’ve got to give you this one lamb, like, it’s better than going, I’m going to be mediocre at work.
Bill Gasiamis 35:14
And we’re going to turn up, I’m going to do a half assed job, and then I’m going to blame the client for not paying me there is a there is a certain amount of brilliance in being 24. And going, I want to be the best designer, and then actually going after it, the skill in growing up and becoming wiser as you grow.
Bill Gasiamis 35:36
And you can be wise beyond your years or 24, if you’re lucky to fall down, to go into that path of wisdom is the skill is to go, what else do I need to do to be the best designer? So does the best designer just draw the best pictures? Build the best websites, the best pamphlets? Or are they also though the best drawer and also the best emotionally intelligent person the most emotionally?
Bill Gasiamis 36:04
Are they the most caring person are they you know, encouraging to their, the people that work for them, we can broaden the the definition of what the best designer is, and add all these other attributes that we can work on. And it’s a great thing to aspire to. If it’s more than just I want to draw the best pictures ever. You know, like, who cares? No one wants you to draw the best pictures ever.
Bill Gasiamis 36:34
When they’re doing business with you, you know that the best pictures are just one part of the business deal. If you draw great pictures, but you’re an idiot, when when you go to the meeting with the client, they’re gonna go great pictures, but we don’t want to deal with this guy.
What happens when the worst happens – Liam BonarLiam Bonar 36:50
Yeah, absolutely. Absolutely. And I think that’s, you know, that’s one example of many kind of ways. I suppose that that I mean, you can describe it as maturity, I suppose, as something that, you know, is almost imposed on you, you know, as a result of trauma. There’s lots of other other ways.
Liam Bonar 37:11
I mean, growing up, I mean, I, I suffered from health anxiety, you know, I always kind of as a kid, you know, it was always kind of, like, weird gonna worry about, you know, what, if I get that, you know, a bit of heat, it’s COVID, you know, but yeah, I mean, it was almost one of those things.
Liam Bonar 37:32
It’s like, well, what happens when the worst happens, you know, and then the worst does happen, you know, so actually, you know, you just have to get on with it, really. So, I mean, that’s another thing that, you know, there’s no point in worrying about that stuff. You know, there’s just no point, you know, it’s not helpful. It’s not useful.
Liam Bonar 37:51
Yeah, it put it in perspective. And I’ve kind of mentioned a few times over the years to people, you know, they always kind of look at me, and I’ve heard a few times on your podcast that people say in it, but you’re the the brain injury, and I talk about it as an injury, because that’s how it that’s the lens of what was going to try to look out for. It’s the best thing that ever happened to me. Oh, really?
Bill Gasiamis 38:15
Wow. Huge time. And I love it. Guess what? Before you go further, I just finished the first draft of my book, my book is called The unexpected way the strike became the best thing that ever happened to me. No slug, okay, the title, the title might change. But that’s what the working title is at the moment.
Bill Gasiamis 38:35
And it interviews 10 People who say exactly the same thing. And we all have various ranges, of, of impact after the stroke. And we all have a different path to stroke. And we will come from a different part of the world. It’s such a weird thing, because I said that on the podcast probably two or three years ago.
Bill Gasiamis 38:59
And I caught myself saying it and then I got really curious, what the hell did I just say? So what the hell did you just say? Tell me, how is stroke? The best thing that ever happened to you?
Liam Bonar 39:13
It’s not something I would wish on someone, you know, to happen to. But I genuinely feel like I’m a better, more balanced, well rounded person as a result. I think I’m healthier than I’ve ever been, ironically. Because I’m not aware of my health and limitations and things like that.
Liam Bonar 39:37
I think I’m happier. I just I just genuinely just don’t come up here. You know, I’m, I’m comfortable of, you know, I’ve got a happy fulfilled life. I’ve got a great partner. You know, I’ve got a beautiful son, you know, proud of my work, you know, I just I’m happy with my law I think is the is the In a bit kind of dumbed down way of talking about, I
Bill Gasiamis 40:02
suppose, tent. Yeah, I’m
Liam Bonar 40:05
totally contented and totally fulfilled. I think it’s one of those things where I was always pushing for more, more and more and more before. You know, I suppose you have to ask, you know, where to where to start kind of desire to become, you know, the best at something can come from, you know, that, you know, to try and achieve things and push and push and push.
Liam Bonar 40:27
And actually, you know, if you actually have take a step back and look at what’s in front of you now, what the time is normal. You know, it’s beautiful. It’s really good. So, so yeah, I think I think that’s, that’s probably the probably the biggest, the biggest thing for me,
Bill Gasiamis 40:43
I want to, I want to focus on this for a little bit longer. So it wasn’t the best thing that ever happened to you when this all started. Okay. changed and shifted. Right. So what would have been the worst thing that have ever happened to you when it started?
Liam Bonar 41:02
Yeah, yeah.
Bill Gasiamis 41:04
Okay. See, that’s the interesting part that people don’t get when I hear when I say that to stroke survivors who are not at that stage where we’re at. Okay, they go, Well, no, hang on a sec strokes, the worst thing that ever happened to it, and I’m like, well, it was to me as well. I’m not saying that it was great.
Bill Gasiamis 41:22
On day one, it was shit on day one, there was shit, the second blade, it was terrible, the third blade. And it wasn’t any good at bloody surgery either. But then it started to evolve and change as I did the healing work. As I did this growth work as I did this deeper search for my purpose and find my meaning.
Bill Gasiamis 41:48
And all those things started to evolve and allow me to think at a higher, what’s the word to think at a higher automated perspective, or to think at a place that 37 year old bill couldn’t possibly do it, I had to get to 41 or 42 to get there. And then when I got there, and I had that realization, it’s like, on reflection, comparing myself to who I was back then.
Bill Gasiamis 42:21
And seeing how far I’ve come. And none of this was how far I’ve come with surgery recovery, it was all about how far I’ve come as a person. This is the best thing that ever happened to me this thing triggered all these other amazing things to occur. And if I hadn’t been through that, I might still be 48. And as dumb as I was when I was 37. And that’d be sad.
Liam Bonar 42:50
Yeah, you don’t know what you don’t know. I mean, it’s as simple as that. And, and, you know, you talked about that as a trigger there. You know, I totally agree, you know, it kind of, it’s almost like hitting the fast forward button on, you know, life, you just have to think about the big things, you know, and you do, and I’m sure you know, anybody that’s had any kind of major trauma. And, you know, 10 years down the line nine years down the line will probably resonate. But
Bill Gasiamis 43:21
yeah, definitely, there’s people there saying that heart attack was the best thing that happened to them that the cancer was that, you know, whatever was the best thing that ever happened, for sure. And often, it’s not because the experience is good. It’s because of the healing and the recovery. And the growth is amazing. It’s a post traumatic growth. Journey. That’s what it is for me. Yeah.
Liam Bonar 43:47
Yeah. That’s, that’s a really great way of summing that up. And I think, you know, you’d mentioned just a second ago about, you know, when it happened was the worst thing that happened. Yeah. And yeah, it definitely was, definitely was.
Liam Bonar 44:01
And I think the, you know, just tapping into that, you know, the name of the podcast know that the actual recovery journey, you know, there was, there was good bits, there was bad bits, you know, like it heads and there’s things that I’m incredibly proud of myself with the way I handled certain things. And then there’s other things that I got wrong, you know, I know I got wrong. And looking back.
Liam Bonar 44:24
So I mean, some of the, some of the Gospels, negative sides of things was that I felt really ashamed of myself. You know, I felt you know, I didn’t I hid myself away. I didn’t want people to see me, you know, I didn’t want people to think that I was weak, you know, I don’t want people to see me vulnerable.
Liam Bonar 44:46
And, you know, it’s part of that, I suppose, is being a young guy, you know, like, most young guys probably would have an element of that. But I think as well it’s, you know, the Can I didn’t have a kind of network in London suppose that I could be vulnerable with.
Liam Bonar 45:08
And that’s, that’s, that’s something that I think, you know, hadn’t really considered, you know, because you don’t think about that when you’re 25 years old, you know, what do I do if I become seriously ill here and, you know, I’ve got a family around me, you know, I’ve got lots of, you know, great colleagues and things like that.
Liam Bonar 45:28
But you know, it’s not the same, you know, it’s not the same. And I’m lucky that, you know, Scotland to the northeast of Scotland, where I’m from a small city called Lundeen, or it’s only 500 miles away from London, so it’s not, you know, you know, I’m not I wasn’t in Sydney, you know, it’s not, it’s not a train, aeroplane journey, you know.
Liam Bonar 45:52
But I think that kind of thing of vulnerability and not wanting to be seen to be weakest last, something I look back on, and thank, you know, I wish I hadn’t done, you know, I wish I had actually just been a bit more open to, you know, people can come and see me and things like that.
Liam Bonar 46:13
But then the flip side is, you know, that actually, you know, fast forward a couple of months, you know, that I’m going to look at myself and thinking, you know, I actually, you know, I’ve totally come to terms with this, you know, this, this is something that’s happened.
Getting back to work after a strokeLiam Bonar 46:29
And, you know, I got back to work as soon as I could, you know, be reduced level, I think that helped me tremendously. I mean, marks driver for me. And it still is, that, that just helps, you know, phenomenally, actually enable, slowly, slowly, slowly, slowly get better, you know, doing my job again, you know, day by day, making better progress.
Bill Gasiamis 46:58
The thing about that is this, a lot of employers don’t give people the opportunity to go back to work to get back to work. They’re doing such a disservice. Because a lot of people define themselves with the work that they do when you ask them. Yeah, look, I did too, when you ask people that question. Hi, how are you? What are you? The next question is what do you do? What’s your name? And what do you do?
Bill Gasiamis 47:22
I mean, tell we all go about introducing ourselves, and then you kind of get a feel for the lay of the land of that conversation by what that person responds as I am a graphic designer, and then Oh, that’s interesting. Tell me about that. Oh, yeah. Well, I have a company and we’d have clients, and it’s okay.
Bill Gasiamis 47:41
And that’s how you identify because that’s what you answer, you answer that question. That way. You don’t say, you don’t say I’m lame. You don’t say I’m Liam, who is, you know, 24. In the future, I want to be a dad, and I want to be married, I have a great network of people around me, you just go straight into, this is what I do.
Bill Gasiamis 48:03
So when you’re not doing that, identity gets impacted, because you can’t go and do that thing. And we and you haven’t had enough time to adjust your identity because stroke happens one day. And before that you were this version of Liam, now you’re that version of Liam, and there hasn’t been enough time to adjust.
Bill Gasiamis 48:25
So people often feel the doom of, I’ll never be able to do X, Y, and Zed. You know, fill in the blanks after that. The reality is, is you just haven’t given yourself time, you can still be a designer the day after you’ve had the stroke. Just be a designer who has to heal and recover. Why don’t you just be that one.
Bill Gasiamis 48:46
And but we’re so short in wiping it in writing, we’re so quick to just wipe ourselves off the face of the earth. Fully you Yeah, you know, give yourself a little bit of time, do the healing phase. Now. Now it’s time to heal. And then once you’ve healed, use your designer skills, if you can never design ever again, to apply them to a new thing that you can do that you will be competent at, and that people will want to pay for or want to support you in or whatever.
Bill Gasiamis 49:21
And it’s just such a bizarre thing that we do now. I did it as well, right? But I’ll never ever do that again. Because I never did. I’ve never described myself as Bill the painter anymore because we have a property maintenance company. I won’t describe myself as I’m Bill. What do you do? I have a podcast. I’m a painter. I do this I do that I do. You know if you want to know what I do? That’s a big conversation. I do so much.
Bill Gasiamis 49:49
But if you want to ask a better question, I’ll answer that as well. It’s the thing is, the person you meet also asks a lazy question. What’s your name? What do you do? You No, I think we could all do better in those conversations.
Bill Gasiamis 50:03
But I, yeah, look, I, I really appreciate you saying what you’re saying, because this is what’s beautiful, you’ve done it at 24, you’ve started to evolve and have this real great awakening at 24, it’s going to hold you in such good stead for the next 30 or 40 years. Because if you’ve come so far already, I can only imagine how amazing of a dad you’re going to be husband, you’re going to be a son, a colleague, that you’re gonna be because you’ve had this journey.
Bill Gasiamis 50:38
And it’s, there’s nothing but gifts in it, it’s shit to start with. But there’s nothing but gifts if you just know where to look. And if you’re, if you have faith, that there are gifts, whether you’re religious or not, whether you believe in religious faith, or just faith, there are gifts there, you just have to give them time also to emerge, not just to go after them, just let them emerge, they kind of happen counter intuitively to other things.
Bill Gasiamis 51:07
you want to be a great designer, well, you have to design more, you have to learn more you have to do you want to be, you don’t want to have a great lesson from stroke, you don’t have to do anything, you just have to sit and let it emerge, and then embrace it when it comes.
Bill Gasiamis 51:21
And be comfortable with being the kind of person who deserves that kind of beautiful thing to happen after such a shift thing you’ve been through a short time. Now just let the lovely things emerge from and take them on and implement them in your life. And then be the example. I thought, you know, what I need to be as the example to my children, and the people around me how you behave when you’re dealing with a life-threatening situation.
The importance of having a network to support your recoveryLiam Bonar 51:51
Yeah, thank you for saying that. I mean, I think that’s that that’s, you know, humbling, and really nice to hear as well. And I, yeah, I think it’s one of these things that, yeah, you just, you kind of just have to roll with the punches a bit, don’t, you know, you kind of just have to take, take it in your stride.
Liam Bonar 52:14
And I suppose, you know, going back to one of the first things I say it’s, you know, kind of came on here about like agenda and things like that, you know, I suppose for me, you know, what I would hate to think, you know, if there’s, you know, other kind of people in their, in their 20s and younger than 30s, and 40s, you know, your heart, whoever, you know, that kind of thing can do it, you know, I don’t think I can get through this.
Liam Bonar 52:36
It really is like, you just have to keep going, you know, you just have to keep pushing yourself, keep pushing forward, and you will gather you will,
Bill Gasiamis 52:46
you said something really interesting, which was your network, you didn’t have a network around you in London, that was going to be conducive of supporting you the way that you needed after a stroke, that we’re the perfect network for before stroke, you can go to the pub pub with them, you can learn from them, you can be mentored by them.
Bill Gasiamis 53:06
You know, you could you could really learn your craft around those people with that network. But then then they’re not the right network for stroke recovery, and nor should they be because they’ve never had a stroke, and we don’t want them to have a bloody stroke, you know, yeah, but then that’s where it’s important.
Bill Gasiamis 53:24
You need to keep that network there so that you still remain part of that. So that your identity is still able to be nurtured as a designer so that you can be a post stroke designer.
Bill Gasiamis 53:36
And then also you need to expand your network and bring people in that are going to help you on the healing journey on the recovery journey, that they might be able to help you with things like meditation, yoga, all the woowoo weird stuff that you thought that’s not for me, I don’t do that kind of stuff.
Bill Gasiamis 53:54
you know, they’re the things that you need to start to embrace the things that you had a negative idea about that were possibly beneficial to you that as a 24 year old, you’re going I’m a bloke, we don’t do that we go to the pub, and we drink our sorrows, you know, out of the out of existence, you know.
Bill Gasiamis 54:17
So it’s like, a really important thing to get to the point where, where people realize that the current network that they have, may not be suitable for the healing journey.
Bill Gasiamis 54:29
And that doesn’t mean you discard them. It just means you add more people in and you find time for other people that you wouldn’t normally associate with that will get you understand you that you will understand and you will appreciate that they understand you this other beautiful network. They’re great. We love them. They got us this far. Yeah, let’s just expand. Yeah,
Liam Bonar 54:55
I and you know, like my friends from from that time. You know, they’re still my friends, you know, they, of course they are, you know, and it’s, it’s not a, it’s certainly not a criticism of anyone or anything, I think, you know, I would open that out to relationships as well, you know, my relationship at the time, you know, it kind of broke down afterwards, like, you know, but it’s one of these things, like, when you’re young, like, how, how are you meant to navigate that?
Liam Bonar 55:26
You know, it’s, it’s a difficult thing, you know, so you need you need the right people the right time, and things like that as well. So But interestingly, the best asset I suppose I added to my network, because I got a dog was, that was an incredible, incredible thing to you to happen, you know, so So I got puppy.
Liam Bonar 55:52
When I was a little bit further along the journey, and yeah, I mean, yeah, when you talk about, like, emotional support, and things like that, you know, we didn’t get her as a as a therapy dog necessarily, but, but Bloody hell, she became a therapy dog. was fantastic. You know, it was just a fantastic, fantastic thing to do. So
Bill Gasiamis 56:19
yeah, that’s excellent. So tell me a little bit about where you’re at now, then. So now, life’s changing. Things are getting interesting. Where are you at now?
Liam Bonar 56:32
So yeah, nine years on. Happy content, done, I don’t have you know, too much in the way of, you know, implication of the hemorrhage. So I get fatigue, you know, I still have fatigue, but still kind of sneaks up, sometimes I get, I get tired more quickly. And when I get tired, it’s like, get hit by a bus, you know, it’s one of those things, but, you know, I can still go for a run, you know, things like that I can easily do my work and everything else.
Liam Bonar 57:09
So, you know, it’s not something even that’s not a barrier. Now, you know, my eyesight has recovered, you know, to the point where I forget about it, you know, it’s not, it’s not an issue anymore. The memory loss and things like that, that. You know, being able to access memories, I suppose, is probably a better way of describing it.
Liam Bonar 57:34
It’s no longer really an issue. I’ve never had problems with short-term memory rent in the car, but it’s more like, the period around the stroke, and a couple of years before that, strangely, are still very fragmented. There’s things I remember, and there’s things that don’t, but that’s fine.
Liam Bonar 57:53
You know, that’s, that’s fine. So make new memories, things like that. So I still get my words jumbled up, when I get tired. Afraid, hard sometimes to, you know, pick the right word, you know, first thing that we think you’ll be fine, just know that, you know, when you get to this nine o’clock at night, you know, that’s, that’s when the word start getting a bit lost. But yeah, I mean, aside from that, you know, no problem at all.
Bill Gasiamis 58:23
Yeah, that’s very familiar, your, what you’re experiencing with fatigue, and all those types of things are very familiar, I still have bouts of fatigue, but majority of my day is good. And I know, I know when the fatigues coming, so I know to adjust and settle down and do less at that time.
Learning how to be more aware of your bodyBill Gasiamis 58:47
So that’s good. I’ve really learned how to be more aware of my body and what it’s telling me and paying attention to it and then responding, which not, we never did that before. You know, I never did that. Even at 37. I never did that. So now I get to the point where I’m going, Okay, it’s three o’clock in the afternoon and feeling pretty good.
Bill Gasiamis 59:11
Four o’clock, I’m starting to get a little bit fatigued, tired. And then by five or six o’clock, it doesn’t matter what is on the to do list. If I’m having one of those days, it doesn’t get done. It just gets put to the side and it waits till tomorrow and forget about it. And my memory serves me pretty well.
Bill Gasiamis 59:27
Sometimes I forget things that are obvious, or, you know, things that I have to do a couple of weeks ago, I forgot to get on a podcast that I had booked with somebody. Even though it was in my diary, even though I knew about it for weeks.
Bill Gasiamis 59:46
I went to bed the night before, didn’t put my alarm on didn’t think about the podcast, and instead of waking up at 630 in the morning I think it was a UK person to to be on the zoom with the UK person or completely forgot about them and Uh, all I did was apologize profusely, later on. And we booked it, you know, it’s no big deal. So those things happen. How’s family life? Tell me about your family life. Your young, growing family?
Liam Bonar 1:00:16
Yeah, couldn’t be better. I mean, my partner is fantastic. Strangely, we shared a birthday. So it’s kind of written in the stars type thing. Wow. Like funny. That is very cool. Yeah. So yeah. So I mean, we’re we’re kind of going great guns and Sons five months old. Nikko, kind of, you know, what more? Can you say?
Liam Bonar 1:00:46
You know, just, it’s great. It’s just really? I mean, these are the things that I worried about at the start, you know, will I be able to have kids? Will I be able to, you know, will I be old enough? You know, they will like, what grew up? You know, things like that? Yeah. Yeah, totally happy. Yeah.
Bill Gasiamis 1:01:11
One of the things about kids, he’s always a really young dad. So I first I was 22. And my first son was born. He’s 26 now. And four years later, my youngest was born. And, you know, talk about what strike did to you? Woke you? Well, I woke you woke up another part of you that forced growth and development and all these things onto you?
Bill Gasiamis 1:01:42
Well, that’s, let me tell you, that’s what exactly what I kid at 22 does. It just, it just says to pull your head out of your ass, and just go and work it out and find solutions to all these new problems that you now have?
Liam Bonar 1:02:00
Yeah, we don’t have time for that. Just do it.
Bill Gasiamis 1:02:03
And I thought I had problems before my son was born. You know, I thought I had problems as a 1920 21 year old, which is fair enough. And then, and then the shit hit the fan. And it was like, All right. Get going, man. So I got going, it’s exactly what I did. The thing about it is I didn’t realize that at some point, you can level off, you can take a step back. And that was what the stroke did. To me, it gave me that next lesson.
Bill Gasiamis 1:02:34
It was alright, you’ve been going great guns now. From the age of 22 to 37, you haven’t stopped for a minute to take a breath. You haven’t, you haven’t taken time off, you haven’t gone on a trip overseas, you haven’t done anything. And it could be all over for you. Now’s the time to stop, take a breath reflect, see how far you’ve come and do something different and change some things.
Bill Gasiamis 1:03:02
So you know, that’s, I’ve did it the other way around, compared to you you’re doing I think whatever. It’s just flipped over. You’re you’ve done the Brain Injury early on, and you’re doing the family things on. And yeah, I reflect back on my time, being a young dad and being at, at some points working three jobs, to try and cover everything right, make sure we were able to eat and nappies and all that stuff.
Bill Gasiamis 1:03:33
And I, the one thing I didn’t do is I never got back, I never felt bad about the set the situation that I had to go and do the three jobs, but I never felt What a shit thing this is and look how bad it is. I always thought at some point, I’m going to get a job that earns more money per hour. So I don’t have to do three low paying jobs. One after the other or all day, every day, seven days a week.
Bill Gasiamis 1:04:03
And that kind of gave me that opportunity to start my own business and realize that if I go work for myself, I’ll be able to earn more and therefore work less hours and then be home more often. Which is basically what happened, you know, like, it was the first part of my life that it made me realize that life is not self-centered.
Bill Gasiamis 1:04:28
It’s not just about me. And that’s it. And the challenge of kids raising kids was an amazing it was an amazing journey into kind of knowing how to navigate stroke, because it was a similar shit show. Really, really early on and then it’s like I had an example of how to overcome you know, financial adversity, how to overcome All the adversities that come with being a young dad and having your wife at home with a child and a mortgage, and a car lease and all that stuff.
Bill Gasiamis 1:05:12
But what I love about your path to being a dad is you’re doing it in your early 30s. And you’ve had all these time of growth and appreciation, and you had all these lessons that you’re going to bring into the way you approach fatherhood and family life. And I just think it’s a beautiful thing now that you get to have this perspective that few people have your data, as well, and you’re a deep thinker. So you’re thinking about it in a different way?
The importance of being present as a fatherLiam Bonar 1:05:47
Yeah, I mean, I look at this in the same way, it’s incredibly, incredibly important for me to be present, as adults, you know, as a father to be there.
Liam Bonar 1:06:02
You know, for my wife, as well, you know, there’s foreign to me, you know, and I think, you know, post kind of post COVID, as well, you know, that, you know, hybrid working and all that kind of stuff, I work from home, you know, I’m in my home office, you know, right now, the majority of my work is done from home, so I can go down the stairs, and I can spend that hour at lunchtime.
Liam Bonar 1:06:31
You know, with the two of them, you know, well, well, then partners on maternity leave, you know, it’s important for me, and I really cherish those moments and everything else. And I think that perspective that we talked about, you know, what’s important, and, you know, works dollars, and obviously, is really important to me, allows me to live, you know, and pay for things and everything else.
Liam Bonar 1:07:01
And I’m every bit as good a designer as I was before I just do it much smarter way, you know, I use my time more efficiently. So that I can also be a good dad, hopefully, and things like that. So. So yeah, I’m excited. I’m excited for the future. And I’m excited for for for bottle brands, and you will the next 10 years, the next 10 years.
Bill Gasiamis 1:07:29
Before you know it, it’ll be 10. All right, it’ll go like that. There’s no doubt about it. And a 26 I miss my kids when they were young. Oh my gosh, do I miss them? And not only do I miss them? They fled the coop, they don’t need me anymore. Well, they might not that’s the thing. And I’m certainly not going to be the winner.
Bill Gasiamis 1:07:59
You’re going to have kids, when are you going to get married kind of guy, right? And look into that. But oh my god, do I miss them, I miss them. Because they, I’ve done the job, I’ve made them independent, I’ve let them just go out and be themselves and discover the world the way that they have to do it. And as proud of that as I am, there’s a part of me that just goes oh my gosh, I wish I could just have them back for a little bit.
Bill Gasiamis 1:08:30
You know, every so often the 26 they’re bloody adults, you know, there’s no chance they’re going to, and we’re going to have him back in that way. But the first 10 years for me, were a bit of a blur because of the amount of work that I was doing. And I missed out on some of that stuff that I think is really important that that I wish I had done.
Bill Gasiamis 1:08:53
What I don’t really wish I’d done a different I did the best I could, but I just done. But I didn’t pay attention to how precious those 10 years are. And it’s, you don’t know what you don’t know. Yeah. And then they go, then they go, and then you reflect on them. 26 years later, it takes a while to reflect on it.
Bill Gasiamis 1:09:15
You then reflect on it in the following 10 years. You reflect on it a little bit further down, usually when they move out of home and it’s like okay, all right. My heart is just going huh. As I settled down we did all right, you know, we did the best we could they’re still close to us, they still love us. They just don’t need us. That’s we made him independent. That’s the whole plan.
Liam Bonar 1:09:40
But in a different way, you know, networks and the right thing at the right time. Different rule isn’t it? It’s a different a different dynamic and you know, like I’m the same with my my parents like I’m really close to my my mom and dad now Well, oh, so I’ve been but you know, the relationships different as an adult, you know, and for them as grandparents and, and everything else. So it’s interesting. So journey isn’t it?
Bill Gasiamis 1:10:12
It’s lovely journey, the grandparents thing is, I found my parents kind of get a second wind in their late in the early 50s and 60s When the four grandchildren came along, because my brother has two kids as well. And it’s really interesting now to see my dad, you know, we used to winch to my dad and say to him, and I stopped, you know, we’ll work out we’ll get a taxi, or we don’t need to be picked up from the airport at five in the morning or any of that stuff.
Bill Gasiamis 1:10:45
But he’s, but if he’s not doing that for us, then he’s not feeling like he’s able to support his kids anymore. And therefore his grandkids, right. So I’ve come to terms with him being over, over supportive even at 81 Lady and doing all these things. And when he says that sometimes my parents, and I’m so blessed, right? How blessed Am I my parents don’t live too far away. So my mum says, You know what, I’m just gonna whip up a three course meal for you.
Bill Gasiamis 1:11:18
And it’s like, do you want it? Do you want me to bring it over at six o’clock on the dot? Yeah. In the past, I would say to her, Listen, don’t trouble yourself, it’s too much trouble or whatever. Now I’m like, Shit, yeah, you cooked me a three course meal, you bring it exactly at six o’clock, I’m gonna sit down on my ass, and I’m just going to eat it. And I’m going to love every minute of it. Thank you so much. It’s a different way to experience them.
Bill Gasiamis 1:11:45
And rather than because they old and frail ish, or whatever, I’m not going to tell them not to do that. I don’t care if it’s hard, I don’t care if it’s difficult for her to stand up. I don’t care if it’s painful. What I care about is that she feels that she’s useful that she’s doing her bit that she has something to occupy her mind.
Bill Gasiamis 1:12:07
And my dad can be the taxi driver for the rest of his life. If he wants to be he can drive until his 100 As long as you can drive properly. I’m more than happy to have him do a free Uber run with food at six o’clock and bring me my perfect three course meal. It’s great. Isn’t it great? That that they can do that? Absolutely.
Bill Gasiamis 1:12:31
There’s no more I’m, I’ve stopped telling them don’t do this. And don’t do that rest and, you know, settle down and whatever. The only thing I tell my dad is don’t get on Bloody ladders, for God’s sake, do not climb ladders. That’s the only thing I tell him. And he listens to at least that much. And you’ll call me.
Bill Gasiamis 1:12:48
And we can get that sorted. But when it comes to all the chores, the gardening, all the stuff that’s too hard for them to do that my mum complains about that everyone complains about it. So I know why you’re complaining. And it’s not because you have to do it. It’s because you wish your body was able to cope better.
Bill Gasiamis 1:13:08
You know, and it’s a great thing for us as well. I complain about doing the hard things, because I prefer my body was able to cope with it more. But it doesn’t stop me from doing them, I still do them. My left side goes numb, and then I can’t feel other than my balances off. That’s the price I pay every single day for waking up and going to work. But as if I’m not going to go to work.
Bill Gasiamis 1:13:35
As if I’m not going to Yeah, because if I’m not going to push myself. And when somebody says to me, Hey, on Friday, when they call me at 6pm on Friday, and it’s at 630 We have to be somewhere that they’ve just decided to go to spur of the moment. I’m dropping absolutely everything and I’m going there. I don’t give a shit what I you know, what I thought I was going to do the rest of the night.
Bill Gasiamis 1:13:59
If you’re invited me out, and we’re going out to have fun enjoy ourselves. And it’s usually a quiet drink or, and I didn’t drink anyway. But I just sort of hang around with people who drink. It’s usually a quiet drink or music or a band or a cafe or whatever. I’m going i i am tired. But that type of connection re energizes me while I’m there.
Bill Gasiamis 1:14:22
It gives me an emotional recharge. And the physical pain and suffering goes away because I’m doing this emotional connection. And I’ve been able to separate the difference between what they all what, what each interaction with a human being gives me now. And then there’s the person who would ring and say, Hey, do you want to go out and I know that person is just going to chew my ear off. Tell me about all the problems in the world all the issues.
Bill Gasiamis 1:14:53
And I’m not going I’m not going with that person. I don’t want to have a draining conversation with that person because my energy as a stroke survivor is limited on a daily basis, and that person is just going to drain it out of me the energy that I’ve gotten, I’m not up for that.
Bill Gasiamis 1:15:09
You need to find somebody else to get rehabilitated from. I’m the kind of rehabilitate you and listen to all your problems to know. Yeah, I’ve I’ve also learned that nuanced way now to interact with people that benefits all of us, not just me and them me separately and them separately.
How art is a development deviceLiam Bonar 1:15:32
Yeah, absolutely. Yeah. It’s kind of a development device, isn’t it?
Bill Gasiamis 1:15:36
It is, it is. Because we don’t have the ability to just forever give and give and give, you’ve got to receive back you got to separate yourself. It’s what we said about the community, the type of community, the appropriate community, you know, you have to enhance it and grow it and bring people in.
Bill Gasiamis 1:15:57
So your son is what’s his name? Nico, Nico? And is he going to be a footballer? What’s he going to do? Like, what’s the what’s the one thing that that’s gonna make him kind of aspire to or be or follow his dreams and
Liam Bonar 1:16:19
whatever he wants, honestly, whatever. So I mean, I take him swimming. So he’s five months old, I’ve taken him swimming since he was six weeks old, whatever week. So there’s classes that the you can do here that are, like supervised, and everything else, but it’s only half an hour at a time.
Liam Bonar 1:16:38
But we go every week, sometimes twice a week at the minute, and he absolutely loves it. So if he wants to keep that up, that’s great. If he wants to, if he wants to play football, he’ll play football. I’m obviously I spent four years art school.
Liam Bonar 1:16:53
So I’d like him to at least have an interest in drawing and things like that, or some form of creativity, or something like that. But yeah, my My thing is, I’ll just expose them to as much stuff as I can. And then what sticks, sticks and what doesn’t, whatever. You’ll find his own way, I suppose.
Bill Gasiamis 1:17:19
Yeah. Tell me about the art, school and creativity. What does that bring into your life other than your job? And how? And has that been helpful in with your recovery? Because you’re gonna you hear about, and I’m probably going to more this, but you hear about the creativity lights up one part of the brain and the other things light up the other part of the brain? And tell me about like, how did it help you with your recovery?
Liam Bonar 1:17:51
Yeah, I don’t want to use a horrible analogy, I want to like paint a picture of, you know, me sitting in a room and painting my way out of a can a nasty situation, because there was nothing like that. But my job as a, as a creative as a designer, is essentially problem solving.
Liam Bonar 1:18:12
So, you know, actually having to think about something really deeply, really, really deeply understand that, in order to solve it. It’s a really analytical way of looking at the world, categorizing things, sorting out making sense of it, and then projecting it back in our way that our understand also that people understand. That’s basically my job is like a conduit between difficult information and helping people understand that.
Liam Bonar 1:18:43
So that was, that was kind of one thing. And a really practical sense. I kind of painstakingly and probably I wouldn’t recommend doing this. But because of my visual loss. I, every week, once a week, had like a wall chart. And I plotted where I could see American tea. And I did that over a period of about 18 months.
Liam Bonar 1:19:12
And I documented it. And I put it into a file and I shared it with the hospital. And the at the time, he had said we’ve never seen anything like this, we’ve only seen from medical sense, but what I would do is I would take the area I couldn’t see and impose it on face, for example, and say, when I’m looking at face, this is what I see. I can’t see the right hand side of your face. If I look at the center of your nose, then I can’t see your eye.
Liam Bonar 1:19:44
I can’t see if you’re smiling on that side or anything else, you know. And it was the first time that it made it because my my symptoms were visual, really. That was the main thing. It made it obvious for people and really understood what I was seeing and what I was experiencing. So that was helpful, that was certainly helpful.
Liam Bonar 1:20:08
And then I suppose it just in terms of, you know, the day to day stuff, you know, we’ve talked about kind of problem solving. And for me, the way I kind of looked at that was around, you know, kind of benchmarking progress. And you know, if I can get even just a little bit better at this law school in the right direction, and I know I’m going the right way.
Liam Bonar 1:20:30
And, you know, if I can, you know, stay awake and watch another episode of, or another game of football or whatever, you know, anything like, that’s a silly analogy, but silly example, but you know, things like that, you know, and that, to me is like, well, this is the problem. And here’s a couple of ways that, you know, we’re working hard to solve it.
Liam Bonar 1:20:51
That’s how I would kind of look at the perspective isn’t it as a different way of looking at things that’s that’s the way that you know, design and design was talked about, it’s like, you look at things differently. Most people look at things literally, designers are trained, or naturally, you know, we’ll do that we’ll look at it laterally, you’ll try and draw an abstract from it’ll try and, you know, bridge piles together, and everything else.
Bill Gasiamis 1:21:16
I love that. I love that application of your training into stroke recovery. And then to, to clearly describe to somebody how you feel with that image, or what you see is just, that’s a game changer, because now they completely totally understand exactly what your deficits are like.
Liam Bonar 1:21:41
Yeah, and I’m much better at visualizing something than verbalizing it. So for me, it’s quicker and more accurate to just show you what I’m seeing than trying to describe it and then some of the interpreter and
Bill Gasiamis 1:21:58
it takes the interpretation out of the out of the just creates a clearer picture of where exactly you’re at. And then that person doesn’t have to guess and imagine and, probably sometimes also, concoct reality in their own head. That’s not actual reality, that’s not real. And because they don’t have the same ability to, to apply what you’re saying, to their particular for their particular needs.
Bill Gasiamis 1:22:30
And maybe they’re using also previous experiences from other stroke survivors, and superimposing their version of what happened to them onto you, and then it kind of has a bit of a disconnect, and it doesn’t really feel right for you and you don’t feel understood, but this way, it’s amazingly simple to help that person understand where you’re at.
Bill Gasiamis 1:22:53
It reminds me of an episode that I did with Maggie Widom episode 47 episodes titled The Great nail what? And Maggie had a problem describing explaining how her I think her left side felt, and she got Barbie dolls. And in one of the Barbie doll in the series of these Barbie dolls, she got one of them and she wrapped it in clay on her left side, for example. And then she just described, that’s what it feels like to be me right now.
Bill Gasiamis 1:23:29
So feels, imagine your body, half of it wrapped in clay, and you having to move that body through the world, you know, how would that be different? And then she got another one. And she painted it with different colors, etc. Then she had another one with I think pins and needles and that type of thing to describe the other feelings and other sensations that she was feeling.
Bill Gasiamis 1:23:56
And the visual image of the when I saw those Barbie dolls for the first time, it was like, Oh, wow, I totally appreciate that. Because now I have a visual to explain something to somebody that doesn’t understand how I feel. It’s such an amazing gift. And she’s a creative kind of person. She is in theater.
Bill Gasiamis 1:24:26
And she struggled early on getting through her recovery, her the impact of the stroke was pretty dramatic, in that she has real trouble on one side of her body and also her her mouth is dripped on one side and it stayed drip didn’t change. And she was an actress and you know, she really became challenged by all that stuff.
Bill Gasiamis 1:24:55
And then I interviewed her probably I reckon in 2016 Something like About 2017. But since then, she’s put together a documentary about her stroke recovery journey. And what they’ve, what she’s had to overcome all the challenges, I was so blessed to be one of the first few people to have seen it to give her my feedback on it.
Bill Gasiamis 1:25:16
It was just amazing that she developed this. And she developed it with an amazing colleague and friend of hers, in the time when she was the most unwell. So she would have been struggling with every aspect of recovery. And in that time, somehow, she’s managed to squeeze out a documentary. Now, I’m not sure if it’s been bought, published, or shown yet or anything like that, I don’t know what stage it’s at, might check in with her.
Bill Gasiamis 1:25:48
But even Maggie has been able to go back to theater, she has been able to find a new community of people. One of the particular theaters that she’s involved in is called Family PHAML. A, why I think family fit the family theater. And it’s people who are somehow disabled, they might be in a wheelchair or whatever.
Bill Gasiamis 1:26:16
And they do productions and they run them, I’m pretty sure they’re la based. So there’s a whole huge, massive amount of shift and change. But she’s used all those skills that she always had. And she’s applied them in these unique and different ways. And she has been able to just bridge the gap between understanding stroke and not understanding stroke with these, you know, beautiful, amazing ways. That’s sounds a little bit like you’re kind of thinking.
The importance of having a creative outlet in recoveryLiam Bonar 1:26:54
Yeah, I think I think for me, as well, it’s always been great. Like, I’ve always benefited from having a creative outlet. And I think, you know, when, when you go into something like recovery, where time is the metric, I suppose that you can rely on you know, it’s like, how long is this going to take to be able to draw and write as well.
Liam Bonar 1:27:20
I mean, like, I really enjoy writing. I pain, you know, like photography as well, you know, to be able to do these things, actually, it’s like, for a lot of people exercise. I mean, you know, like, I’m not running at the minute, but I do enjoy, things like that. But the thing that I really the thing that silences my mind, and helps me relax is to create. So you can find solace and things like that. Definitely.
Bill Gasiamis 1:27:50
Brilliant, mate. I realize it’s getting late over there where you are. I really want to thank you for being on the podcast, and reaching out to be on the podcast. Great to hear your story and your journey. We should Well, best of luck with the little one. And thank you for being on the podcast.
Liam Bonar 1:28:09
Thanks so much. No, it’s a pleasure. I really enjoyed it.
Bill Gasiamis 1:28:25
Thanks for joining us on today’s episode. Now to learn more about my guests including links to their social media and other pages. And to download a full transcript of the entire interview, please go to recovery after stroke.com/episodes. If you’d like to support this podcast, the best way to do that is leave a five star review, and a few words about what the show means to you on iTunes, and Spotify.
Bill Gasiamis 1:31:33
If you’re watching on YouTube, comment below the video. Like the episode and to get notifications of future episodes, subscribe to the show on the platform of your choice. Sharing the show with family and friends on social media will make it possible for people who may need this type of content to find it easier.
Bill Gasiamis 1:31:51
And that may make a massive difference to someone that is on the road to recovery after their own experience with stroke. Now, if you are a stroke survivor with a story to share about your experience, with stroke, come and join me on the show that interviews are not scripted, you do not have to plan for them.
Bill Gasiamis 1:32:09
All you need to do to qualify is be a stroke survivor, or a caregiver for someone who has had a stroke. Or you are one of the fabulous people that help other stroke survivors. Whether you’re a medical professional or in any other field, just go to recovery after stroke.com/contact Fill out the form.
Bill Gasiamis 1:32:30
And as soon as I receive your request, I will respond with more details on how you can choose a time that works for you and me to meet over zoom. Thanks again for being here. And listening. I really appreciate you see you on the next episode.
Intro 1:32:45
Importantly, we present many podcast designed to give you an insight and understanding into the experiences of other individuals opinions and treatments protocols discussed during any podcast or the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.
Intro 1:33:02
All content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill gaseous the content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.
Intro 1:33:24
The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.
Intro 1:33:39
Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content. If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional.
Intro 1:33:53
If you are experiencing a health emergency or think you might be, call 000 in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department. Medical information changes constantly. While we aim to provide current quality information in our content.
Intro 1:34:09
We do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content you do so solely at your own risk. We are careful with links we provide however third party links from our website are followed at your own risk and we are not responsible for any information you find there.
Thanks for joining us on today’s episode. Now to learn more about my guests including links to their social media and other pages. And to download a full transcript of the entire interview, please go to recovery after stroke.com/episodes. If you’d like to support this podcast, the best way to do that is leave a five star review, and a few words about what the show means to you on iTunes, and Spotify.
Bill Gasiamis 1:31:33
If you’re watching on YouTube, comment below the video. Like the episode and to get notifications of future episodes, subscribe to the show on the platform of your choice. Sharing the show with family and friends on social media will make it possible for people who may need this type of content to find it easier.
Bill Gasiamis 1:31:51
And that may make a massive difference to someone that is on the road to recovery after their own experience with stroke. Now, if you are a stroke survivor with a story to share about your experience, with stroke, come and join me on the show that interviews are not scripted, you do not have to plan for them.
Bill Gasiamis 1:32:09
All you need to do to qualify is be a stroke survivor, or a caregiver for someone who has had a stroke. Or you are one of the fabulous people that help other stroke survivors. Whether you’re a medical professional or in any other field, just go to recovery after stroke.com/contact Fill out the form.
Bill Gasiamis 1:32:30
And as soon as I receive your request, I will respond with more details on how you can choose a time that works for you and me to meet over zoom. Thanks again for being here. And listening. I really appreciate you see you on the next episode.
Intro 1:32:45
Importantly, we present many podcast designed to give you an insight and understanding into the experiences of other individuals opinions and treatments protocols discussed during any podcast or the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.
Intro 1:33:02
All content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill gaseous the content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.
Intro 1:33:24
The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.
Intro 1:33:39
Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content. If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional.
Intro 1:33:53
If you are experiencing a health emergency or think you might be, call 000 in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department. Medical information changes constantly. While we aim to provide current quality information in our content.
Intro 1:34:09
We do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content you do so solely at your own risk. We are careful with links we provide however third party links from our website are followed at your own risk and we are not responsible for any information you find there.
The post What Happens When The Worst Happens – Liam Bonar appeared first on Recovery After Stroke.
Andrew Stopps had a stroke in November 2021, which was unexpected as he had no prior symptoms. He had previously been treated for a brain tumor in 2005 with radiation, which only resulted in right-side deafness.
Highlights:
01:11 Introduction
03:37 Battling a Tumor with Radiation
05:16 The Initial Stroke Symptoms
13:09 Using Your Hand To Develop New Neural Pathways
19:44 The Pseudobulbar Affect And Inappropriate Laughing
31:00 Andrew’s Identity As A Musician Is Challenged
37:47 Treating Yourself Like A Child After A Stroke
48:17 Andrew’s Continued Recovery From His Stroke
1:02:01 Meditation And Hyperbaric Chambers
Transcription:
Andrew Stopps 0:00
I was frustrated by the lack of movement or the lack of not being able to do things as quickly. But I saw it more as a brain reset is like my brain was reset to a childhood time. For example, when my speech started to return, I had a really, really clear British accent.
Andrew Stopps 0:31
And my first five years of life in the UK, so that’s what I had as a really small child. And suddenly I was speaking with this British accent again, to the speech therapist. And it wasn’t till weeks later that my old Australian accent returned.
Intro 0:58
This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.
Introduction
Bill Gasiamis 1:11
Hello, and welcome once again to the recovery after stroke podcast. This is episode 241. And my guest today is Andrew stops, who recovered from a brain tumor and also experienced an ischemic stroke in 2021. Andrew stops, welcome to the podcast.
Andrew Stopps 1:29
Thank you very much for having me. It’s an honor to be here.
Bill Gasiamis 1:32
Yeah. Thank you. Tell me a little bit about what happened to you, Andrew.
Andrew Stopps 1:37
Well, I had my stroke in November 2021. So but it wasn’t the first brain injury I’ve had. I had a brain tumor before that back in 2005. And I was treated with radiation for that. And I didn’t really have any after-effects other than right-side deafness. And then 2021, I had the stroke and it was a such a surprise. Because it literally came out of nowhere.
Bill Gasiamis 2:14
How old were you?
Andrew Stopps 2:16
47.
Bill Gasiamis 2:18
And how old were you when you had the brain tumor?
Andrew Stopps 2:22
2005. In my 20s somewhere.
Bill Gasiamis 2:31
In your 20s that will do man. So in your 20s, that’s pretty full on right to get that kind of diagnosis, you’re probably at the peak of energy running around doing all sorts of stuff.
Andrew Stopps 2:49
Yeah and then kind of like the tumor that I had was an acoustic neuroma. So it’s a slow-growing tumor. But mine was atypical as it was growing really fast. But it doesn’t give you any side effects early on, so you don’t even know you’ve got it. The reason I knew I had it is that one day I just woke up and half my face was paralyzed. And that sort of led to scans and they saw the tumor. Really close to my brainstem, like touching my brainstem. And so something had to be done straight away. So they radiated my head.
Battling a Tumor with RadiationBill Gasiamis 3:37
I’m smiling because that sounds really intense. Was it intense? Radiating your head?
Andrew Stopps 3:45
Yeah. Because your head’s in a cage, they make a mold, and they put your head in a cage, and for five days straight, they shoot, radiation through different points in your head, that all converge on the tumor. And I chose that route to go because it has the least side effects afterward. If I had it operated on and cut out, it probably would have left my face paralyzed and I’d have had no chance of getting my hearing back ever. And being as a musician. I want that. You know, I want that possibility.
Bill Gasiamis 4:25
I hear okay. So it was successful treatment?
Andrew Stopps 4:29
Yes, yes. It didn’t really save my hearing. The tumor grew too fast. And it was growing at the auditory nerve. So it damaged a nerve too much. But it stopped the tumor and yeah, and it killed it basically in my head. So yeah, I just got on with life and what I had to do.
Bill Gasiamis 4:52
Excellent. So there was no deficits or anything like that.
Andrew Stopps 4:55
Oh, except for the deafness. That’s all. My face returned to normal. And I thought that’s it. I’ve done the brain stuff now. It’s, you know, I can get on with life. And it wasn’t to be wasn’t not to be.
Bill Gasiamis 5:11
How did the ischemic stroke come to happen?
Andrew Stopps Initial Stroke SymptomsAndrew Stopps 5:16
So it happened on a Saturday morning in November 2021. And I woke up about 6:30. And immediately felt strange, I immediately felt off balance. And I thought, Ah, I have some balance problems from the revenue from the tumor. So I thought it was just that I’m just tired.
Andrew Stopps 5:40
So I went downstairs, and I started making myself a coffee. And I went to grab the handle of the cupboard with my right hand. And I couldn’t, I kept missing, I couldn’t seem to find the handle. And I thought, wow, this is really weird. I must be really tired.
Andrew Stopps 5:59
So basically, got the cupboard open, got a cup out, tried to make myself a coffee, and I was missing, I just could not. My hand couldn’t find objects I could still grab, but I couldn’t, I couldn’t physically find them in that space. And after about five minutes of this happening, I thought, Now something’s really wrong. Like, I didn’t think stroke at that point.
Andrew Stopps 6:27
I went and work my partner and my husband up. Because I, like this is this was too weird, like, you know, and I went to say, something’s going on. And I couldn’t, I mumbled. And at that moment, we knew get to the hospital now, let’s go. So we went straight to the hospital. And, and they took me through and it was a TIA.
Andrew Stopps 6:57
So it resolved. So I was laying there and all the, like everything resolved, and I was back to normal. And so the hospital was discharging me. And just as they were filling out the forms, and the doctor was with me, she said, Look, just one more test, just touch my finger, touch your nose.
Andrew Stopps 7:16
And so I did that and went, my arm was really heavy. And said do it again. And I was getting lower and lower and lower. And that’s the big stroke happened right in front of the router.
Bill Gasiamis 7:29
Wow so of a bit of good luck in a really shitty situation. And then do you remember what happened after that? Or are you admitted?
Andrew Stopps 7:42
I remember bits and pieces. So I remember. I remember thinking the whole time. This is very interesting. Like I wasn’t scared, it was I was just dispassionately observing what was happening to a body. I remember my arm getting heavier and heavier and heavier until I couldn’t lift it anymore.
Andrew Stopps 8:04
And I didn’t so much get processed to the leg. But But I lost, my foot just flopped. And my speech became really, you know, like incoherent. And I just remember being well to get to a CT scan MRI, and then I was up in critical care. And it was up in critical care actually, there’s this sort of a blank spot on my memory going from emergency up to critical care.
Andrew Stopps 8:33
But I remember being up there. And I think that was when it hit me and I just like burst into tears and just sobbed like for ages about what had happened. And then after that I’m sleeping. I was so tired. I couldn’t keep my eyes open and I remember sleeping for hours and hours.
Bill Gasiamis 9:00
Just a quick break and we’ll be right back to the interview. As a stroke survivor, I understand the difficulties of finding the right information about post-stroke nutrition. That’s why I developed the course five foods to avoid after stroke. While most people are talking about what to eat after a stroke to support brain health, and recovery, very few are talking about what you should avoid eating after a stroke.
Bill Gasiamis 9:23
If you want to support your brain to heal, curious about the five foods that may make matters worse when you consume them, then you may benefit from this course. In the fun five series of interviews you will hear about what foods not to eat after a stroke.
Bill Gasiamis 9:38
But most importantly, why not from a qualified nutritionist Stacy Turner and performance coach Mathias Turner in the more than five hours of interviews with discuss the five common foods that cause inflammation in the body and brain and how they could interfere with healing and how they may make fatigue worse for just $49 This five part series of more than five hours of interviews with full PDF transcripts for download.
Bill Gasiamis 10:06
mp3 is for download, and videos will give you everything that you need to know about the five foods to avoid and why. The modules include eight reasons to quit sugar after a stroke. seven reasons to quit caffeine after a stroke, eight reasons to quit gluten after a stroke, six reasons to quit dairy after a stroke, and six reasons to quit alcohol after a stroke. And probably that is one of the most important things that you have to and should quit after a stroke.
Bill Gasiamis 10:38
It’s interfering with your recovery, visit recovery after stroke.com/courses. For this and other specifically designed short and easy-to-understand courses that are made by a stroke survivor for stroke survivors. Once again, you’ll get more than five hours of content, all audio is available to download in mp3 format for listening on the go full transcript of all the content to take notes on or read instead of listened to presented by a stroke survivor four stroke survivors.
Bill Gasiamis 11:11
also presented by a trained nutritionist and performance coach, you will also get 24 hours of access, lifetime access to courses purchased. And you’ll be able to interact with yours truly, in the comments section. Go to recovery after stroke.com/courses to check them out now. Do they know what the underlying cause of the ischemic stroke was?
Andrew Stopps 11:34
No, no. And even even now, I saw the specialist about three weeks ago and and he said, Look, it’s probably a good thing. We don’t know what caused it because that we that usually has the best prognosis. So I thought, well, if
Bill Gasiamis 11:52
you have a love, and we don’t know what caused that, look, maybe it won’t ever happen again. So why not just go with it for now. But the thing about it is you had this experience in your 20s I’ve done the calculation, I reckon you’re 27. And then, when you’ve had this experience, are you comparing the two? What are you doing about your previous experience? How is that playing a role in your current situation?
Andrew Stopps 12:23
Um, yeah, well, yes, it it does it as much as my attitude towards it was, was the same as like, oh, here we go again. And, and the first one, the prognosis was really bad if I didn’t have have something done. So it’s just kind of here we go again, you know,
Bill Gasiamis 12:49
is that here we go again, from like a, probably this. This is something that we’re gonna get through overcome, or Here we go. This is bad, not good.
Using Your Hand To Develop New Neural Pathways
Andrew Stopps 13:00
No, it’s we’re gonna become like literally, I mean, you know, Saturday had the stroke. Monday morning. I was moved to a ward and I was just like, right? What do I have to do? What I have to do to get better. And, you know, physio started that day, rehab started that day. And I was just determined to, to get functioning again, from literally the get go, like I was really determined.
Bill Gasiamis 13:30
Yeah. Sounds like it, I like it. I like it.
Andrew Stopps 13:36
It’s funny that because they don’t tell you a lot of things I’ve learned so much by by researching myself, finding exercise for myself, finding stuff, rehab stuff that specific to what I wanted to do. And, you know, and being a trained musician, like, I had an insight to my body’s musculature and breathing and and the way I learn, so I was able to sort of build on that to help with the recovery.
Andrew Stopps 14:06
Even with the hand like that. I mean, you can see this my deficit hand. Yeah. So I’ve, you know, getting back the movement in that. And I’ve been using this device. It’s a little practicing device used to practice and a brass instrument when I can, I’m using it to isolate my fingers. Samples, strengthen them. So
Bill Gasiamis 14:31
I’ve seen an improvement and notice the difference between when you started and now.
Andrew Stopps 14:36
Oh my god, yes. Oh, yes. Because spring is like, for the first six weeks, I had nothing in my arm there was it was just dead mess on the side of my body. Like um, so, I mean, I can use it, you know, almost normally I can’t write yet. I can’t pinch it because of my thumb, sort of pinch to the side.
Andrew Stopps 14:57
But other than that, I can pick stuff up in I like, yeah. I can not for very long. I mean, I mostly use my left hands type. My right hand, does type of my fingers get tired? Yeah. But I tried to incorporate my right hand, like, in everything that I do. So whatever I’m doing, I make sure my right hand is doing some part of that task. So I’m not, you know, it’s not getting a practice on us.
Bill Gasiamis 15:30
Even the Yeah, let’s actually repeat that, because that’s a really important point you just made. So why are you including your hand in everything that you do?
Andrew Stopps 15:42
So that I’m not developing practice for your practice, or non use? Yeah, non use. So
Bill Gasiamis 15:50
it’s kind of Neuroplasticity in a negative way, it’s the opposite of using your hand to practice something, so that you can get create new neural pathways in your brain. And then yeah, working, it’s the opposite of that. It’s like, if you, if you’re not using it, there could be two reasons why somebody don’t doesn’t get movement back in one of their limbs, specifically a handful for this example.
Bill Gasiamis 16:15
One of the reasons is that there was a stroke, and the pathway is no longer there, or has been interrupted with or has been inflamed or there’s something wrong with the pathway that tells the hand to move from the brain, there’s a connection issue.
Bill Gasiamis 16:27
And the other one is where the head because of that connection issue at the beginning, is excluded from being used. And then it develops the pathways for non use. So no new car, it doesn’t actually then work. Not because it’s damaged, it may have healed, but it hasn’t been used. So the practice is gone. And then it’s the whole user loser routine.
Andrew Stopps 16:55
Yeah, definitely. Definitely. And I was aware of that, from really early on. And it was really important to me to get my arm moving. And I remember, like, you get six weeks, like rehab at home rehab, here in New Zealand, from you know, when you’re discharged. And so, for that six weeks, yeah, we weren’t getting very much moved.
Andrew Stopps 17:24
And at all, I had to look headed a little bit, but not much. And then I found that if I if I yawned and when you’re, you know, you automatically stretch. Well, if I was in a laying position, and I did that, my arm would lift up, but you know, as involuntary movement and so I worked with that, I, I kept doing that until I could lift up standing and do that. And gradually my movement came back. So but it all started from like the involuntary movement.
Bill Gasiamis 18:01
If I’m in bed, and yawn, and stretch and do those big morning stretches, like you said, my left leg I could cramps in my left leg. It goes from okay to cramping. I bloody annoys me because I love waking up in the morning. And during that stretch, it’s kind of get gets things going. And my left calf will go into spasm.
Andrew Stopps 18:24
Actually, I was one I was right. So deficit, I get that too. If I stretch my left and my right leg out. In bed in the morning, I get really bad, really bad cramp like it’s
Bill Gasiamis 18:40
so hard to reset it and to get the cramp to stop. It’s like, I’ve never had cramps before. And I understand now what happens when people suffer from cramps all the time. But that pain point pinpoint pain in that one spot in the muscle that just goes deeper than the depth of the earth. I know. Unbelievable. How do they do that? I mean, how do they do that? How does it do that?
Andrew Stopps 19:08
And yeah, I know and like I just tried to try to move your foot to stretch out the cramp is excruciating. Yeah, I’m, I try really hard not to stretch my legs in the morning. Because it’s not worth it. It’s not worth the pain. So
Bill Gasiamis 19:28
if anyone else goes through that, if people are watching and listening, and they do go through there, let me know in the comments, or yeah, just let me know. I’d love to know if that happens. I didn’t think that you were gonna say are you that happens to me too. I had no idea you were gonna say that. I thought that was just me. But good. Just goes to show.
The Pseudobulbar Affect And Inappropriate Laughing
Andrew Stopps 19:45
The other thing that I found interesting is that sometimes my right foot, there’ll be like a nerve bias and my foot just twitches like totally right randomly. And it feels almost like someone’s putting a feather or something on my button and my foots, like ticklish on the Yeah, it, it just happens like at random times.
Andrew Stopps 20:15
Yeah, that’s that’s been really weird as well that, that and, and my diaphragm muscles on my right side Twitch if I if I get very emotional so if someone says something and I have an emotional reaction, the old pre stroke Andrew normally kept really stuck. But the post stroke Andrew I get this emotional Twitch that almost comes out like a laugh.
Andrew Stopps 20:46
And that could be like, it could be someone’s told me something really sad or or anything. But I like immediately, like lead out this laugh which is not meant to be like it’s not it’s not a funny laugh at all. It’s my diaphragm twitching that’s been embarrassing at times and, and interesting as well.
Bill Gasiamis 21:10
All right. Have you heard of the pseudobulbar affect?
Andrew Stopps 21:15
Yeah, I think I have that remind me
Bill Gasiamis 21:19
pseudobulbar affect It’s a condition that happens to people who have neurological injuries like strokes. And I had had the symptoms of it. For me Sheila bye bye effect caused crying, uncontrollable client crying in inappropriate moments.
Bill Gasiamis 21:35
And what I learned after I discovered that it was about inappropriate crying, which is very common for stroke survivors also learned that there’s another version of it inappropriate laughing in, in moments, such as funerals, and you know, really non appropriate places like that.
Andrew Stopps 21:58
Yep, yep, that’s, I can relate to it. And also because, like this side of my face, wasn’t really affected too much by the stroke, just my tongue and and like sort of around my mouth. But I’ll break into a smile. uncontrollably, which sometimes is great. But sometimes it’s really inappropriate. And I just have to like, you know, cover my face.
Bill Gasiamis 22:24
Yeah. Yeah. And pretend you’re not smiling. Interesting. Is there something that you wish they did for you or told you in hospital during your stay, so that that would make your time at home better?
Andrew Stopps 22:46
Lots of things. Lots of things. Got where to start. I mean, you know, I can’t complain about the care I had in hospital. But the doctors just talk about, you know, neurological medical things. And don’t talk to you about all the other stuff they experience.
Andrew Stopps 23:11
When you’ve had a stroke, like, you know, like you were saying about inappropriate crying, I found, especially in the first six months, that if something moved me, it wouldn’t move me to tears like immediately, and I’ll be bawling. And the same with, you know, the opposite if something made me to laugh. I’ll be laughing hysterically. Like I’d be at the extremes of the Rangers. There was no subtlety.
Intro 23:37
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like how long will it take to recover? Will I actually recover? What things should I avoid? In case I’ll make matters worse, doctors will explain things that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 24:03
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called seven questions to ask your doctor about your stroke.
Intro 24:21
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition. They’ll help you take a more active role in your recovery head to the website now recoveryafterstroke.com and download the guide it’s free.
Andrew Stopps 24:41
That was kind of scary because I thought oh god I don’t want to be like this for the rest of my life. This is you know is too much. Thing about practicing you know my rehab and doing the rehab, I found that I, when discovered exercises and myself, because I wasn’t being told or given guidance in that area, I just found I really had to be self reliant in as much as is my recovery went.
Bill Gasiamis 25:27
Self motivated and taking the responsibility for that path of your recovery, and kind of leading the charge, is that what it was like?
Andrew Stopps 25:37
Yeah, I mean, the rehab team, in the first six weeks, sent me some goals of what they wanted me to do, like, you know, we’ve got a two story house and one of the goals was to be able to go up the stairs. And things like, you know, being able to shower and drama self being able to be in the kitchen and butter bread.
Andrew Stopps 26:01
And so all those things, were mine, I had those goals, I just practice and practice them. And, you know, by the time they come the next week, I was able to do them all. But they weren’t. They weren’t giving me things that were just things to help me, you know, with the big things in life, they weren’t other things I needed to, you know, fully recover, there were just things I needed to get by.
Bill Gasiamis 26:25
So tell me, what about what were some of those things you needed to fully recover as in? Well, knowing that now, you probably didn’t leave hospital, saying in your head, I’m going to need all these things. You got home? And then you thought, Oh, what about this? And then you thought, Oh, what about that? Do you know, what those things are now? would you be able to tell us?
Andrew Stopps 26:48
just thinks like, Okay, well, I can I can, you know, they’ve taught me how to butter bread with my left hand. But how am I going to teach my right.
Bill Gasiamis 27:00
Okay, the right hand, which is the
Andrew Stopps 27:02
straight effective side? Yeah. So now we’re teaching, they were giving me lots of things. And lots of exercises to do that were sort of replacing my the deficit side, rather than teaching it. And I knew already then, that if I didn’t use the site, it would be neglected, and we’d learn non use.
Andrew Stopps 27:29
So rather than teaching me to bother with my left hand, which was really good, initially, like, early on, when I had no when I couldn’t hold a knife. I had. They weren’t around when I needed to learn how to do it, and learning how to hold a pen again. I remember, the one thing I did, just before I left the hospital on the morning of the stroke is in the kitchen was a scrap piece of paper was a piece of paper, and a wrote on the paper with my right hand, I m address drops.
Andrew Stopps 28:03
And it’s the last thing I wrote before I lost the use of the hand. And it’s it’s really interesting. I wrote there because I was sort of, like, asserting my identity or, or saying, you know, this is who I am, is I’ve got to remind myself who I am. I don’t know why I did that. It’s very strange.
Bill Gasiamis 28:27
It is very strange. That’s extremely strange. Now, I love that you did it. I made your stops you came home? Did it mean anything to you? When you saw it? When you saw it again? What did you see it again? And we
Andrew Stopps 28:41
had the really powerful effect because when I got back, I saw it. I thought I’m not Andrew stops now. I am something new, someone new? I’m not the same person who wrote this, that piece of paper. And and, you know, I’ve, especially the last six months, I’ve really been working on what is my identity and what is self identity? And, and what it all means and not get too caught up in what I’ve lost.
Bill Gasiamis 29:20
Yes. Let’s describe. That’s, that’s, that’s, let’s talk about that. So out of curiosity, how would you have described yourself before the stroke, okay. And the example is, you know, I’ll do mine. I’m, I’m Bill, I’m a father of two, and my husband go to work. I have, I enjoy sport. I ride a bike, those types of things.
Bill Gasiamis 29:46
That’s how I would have. That’s how I’m doing it now. 10 years later, I don’t know what I would have done 10 years ago, but that’s how I would describe it now. So your stroke was a little bit more recent. So I’m curious. Do you know how you describe I’ve just after somebody who asked you, who is Andrew stops a couple years ago? Yeah,
Andrew Stopps 30:05
yeah. So, musician, composer, educator, husband, brother. I like riding bikes, too. Yeah, those but particularly musician and educator were like,
Bill Gasiamis 30:23
the biggest part the most broadest part. Yeah. Or the most, the most, the part that you identified with the most, yeah, but there seems to be some broad, a little bit of broadness to your identity, you all these other things while you are a musician, right? So, when you came home, how did how would you have described yourself then?
Andrew Stopps Identity As A Musician Is Challenged
Andrew Stopps 30:48
Initially, when I came home, and I saw that piece of paper, I thought, I am not that Andrew stops anymore, but it was so so overwhelmingly painful. I didn’t, I left it. And I just focused on, like, trying to claw back, the person that I was, now. I really did some exploration, especially over New Years and years, it really struck me the most, because every year of my life, the New Year, I knew what was coming up, you know.
Andrew Stopps 31:28
And there were no surprises, like I knew what this year was gonna was gonna bring. And this year, for the first time of my life, I didn’t know. I didn’t know like, even last year was was going to be recovery. So last year, I knew what it was, this year, I had no idea. And I got really, really scared and really depressed.
Andrew Stopps 31:51
And I start to think about my who, who I am, and identity. And I thought about I must have had a time of my life, when I didn’t have a very strong identity, like, oh, any at all, when I wasn’t a musician or an educator. So I thought back, and I can remember a time when I was 18 months old. And my dad was holding me up in his arms.
Andrew Stopps 32:23
And I remember him, me saying to him, Dad, can I have a brother? And Dad said, I’ll talk to him. We’ll see what we can do. I can remember so vividly, and I’ve had a 10 month old. Yeah. And I had to be 18 months old.
Bill Gasiamis 32:40
You didn’t speak any words? Or were you speaking?
Andrew Stopps 32:43
I can speak them. Yeah, I can speak at 18 months.
Bill Gasiamis 32:46
And you said you wanted a brother? Yeah,
Andrew Stopps 32:48
I got one. So I was I was really, it’s but I remember that had like that memory so vividly. And I thought to myself, Okay, who was I then? Like, if I see, if I looked through the eyes of the 18 month old me, what did I see? And I saw potential. And I thought that’s who I am. I’m potential. And as soon as I realized that, I stopped stressing about who is Andrew stops? Okay,
Bill Gasiamis 33:21
I love it. So let’s go back for one second. You’re a musician before the stroke, the stroke, you don’t cease to be a musician? Do you feel like you have ceased to be a musician at that moment? Because it’s not true that just because you can’t hold your favorite instrument that you’re no longer a musician. So how does that impact you? Like what’s happening there at that moment? How does that identity become challenged?
Andrew Stopps 33:58
Not being able to play my instruments is is hard. Because I had them me in this room here. I have like a keyboard over there and clarinet down there. And I can twiddle around with my left hand on them. But you know. Yeah, like, I can’t play them anywhere near near like you’re used to. I can compose those still. But yeah, it’s it’s
Bill Gasiamis 34:28
just because you can’t play Does that mean you’re no longer a musician?
Andrew Stopps 34:35
No, no, it doesn’t. Because everything’s there. Everything’s in my head. I still know how to play. I just my right hand just feels like it’s in molasses.
Bill Gasiamis 34:48
So feels like it’s in molasses. Yeah. I love it. Yeah. Great explanation.
Andrew Stopps 34:54
It’s just in the thick Yeah, something The same. And I mean, I’ve held my clarinet with and and move my fingers on, on my right hand, but they’re, they’re really slow. I mean, I’m grateful that I can especially after what 14 months, you know, I’m so grateful that I can move my fingers independently, but they’re just slow. So I guess, you know, I’m still a musician, but I’m just now a non practicing musician. I guess that’s what it is,
Bill Gasiamis 35:34
like a lot of Christians or Catholics? Yep. We still identify as whatever we are. But, you know, like this anymore or whatever? Yeah. Okay, I hear. All right. So that’s the thing. I’ve been doing how? And I’ve been, in my own mind trying to work out. What is the thing that morning that people mourn? And I don’t know, I don’t speak for everybody.
Bill Gasiamis 36:02
But I’ll speak for myself. So I’m wondering that question. So it’s something that I’ve been thinking about the last few months, particularly. And I’m not sure where I heard it. But I think somewhere what I heard was that people mourn the potential that they are, they cannot any longer achieve. And that potential is what they mourn.
Bill Gasiamis 36:30
And when I think about me, there’s definitely no morning of my past self, like the self that was totally physically able to play sport, for example, or to ride a bike without feeling the left side, go all stiff, and, and all that sort of stuff. I didn’t mourn, having to change the way that I worked, because I was working really terribly.
Bill Gasiamis 36:57
And in an in an unhealthy way. I didn’t mind my personality, or, because that was not really the best kind of me that I could be that I was mourning the potential that I wasn’t going to achieve or stuff that perhaps now that I’ve had the stroke, I’m not going to be able to do because my brain, for example, doesn’t work the same way that it used to never.
Treating Yourself Like A Child After A Stroke and Hearing LossBill Gasiamis 37:27
And I felt at the beginning of that perhaps it’s not going to come back and be a brain that can support stuff like an audio, podcast, or stuff, like writing a book or anything. And I didn’t know what was going to be possible either. So I felt like I was mourning loss potential in the future. Yep. I don’t know if that resonates with you. Did you have any of those types of feelings or thoughts?
Andrew Stopps 37:55
It’s funny I did the morning after the brain tumor when I lost my hearing, okay, so when this happened, I I didn’t so much more than the loss potential. I I was frustrated by the lack of movement, or the lack of not being able to do things as quickly, but I saw it more as a brain reset is like, my brain was reset to a childhood time. For example, when my speech started to return, I had a really, really clear British accent.
Andrew Stopps 38:46
And my first five years of life in the UK, so that’s what I had as a as a really small child. And suddenly I was speaking with this British accent again, when to the speech therapist. And it wasn’t till you know, weeks, weeks later that my old Australian accent returned, because as I grew up in Australia, I just moved here, like 14 years ago.
Andrew Stopps 39:15
So Right? Yeah, so a sound and everything else, like, you know, how my emotions were affected, like I respond, like a child does with, you know, how little kids can’t control their emotions, they’re crying or they’re laughing or I’m responding the same way. The sensory overload you get is like a child or like a toddler, you know?
Andrew Stopps 39:44
And so I’m exposing myself gradually to more sensory stimulus to try to get used to it again, even to the point where now I’ve I’ve found on YouTube that background sounds of a pub With all that noise and and I just listened to it through headphones just to get myself used to this the sensory input, because it’s really tiring, that much noise going into your heart after you’ve had a stroke, and I’m finding that I’m, yeah, I’m filling myself like, or training, what’s happened up the stroke like it like a child, and teaching again how to do things, how to write, you know,
Bill Gasiamis 40:31
I really liked that approach, it’s probably the most. Because when you’re a child, you got the most potential ahead of you, and you can, you’re, you’re not going to stop a child, regardless of what happened to their child to reach its potential. Because that child had an injury or something unfortunate happen when it was early on, it’s gonna go for that recovery.
Bill Gasiamis 40:55
And it doesn’t even really know it, it’s just instinct is going, Well, my friends are playing, I’m going to play all my friends are doing this, I’m going to do this. So I love that idea of treating yourself like a child in that you’re going to give yourself all the space, I imagined that a child needs to just go through the motions, terrible at something early stage and then see the improvement and then focus on where you’ve come rather than what you’re lacking.
Andrew Stopps 41:24
Yeah. And, you know, one thing, one of my rehab people said to me early on, when I was having home rehab, is I would get really angry and frustrated with myself, I couldn’t move my arm. And she said, Look, your anger is what’s stopping you from moving it. You got to be patient with yourself.
Andrew Stopps 41:46
And that’s when I started realizing that, like, my brain has had a factory reset. And I have, I have a half of me now as a child, like a small child, and I had to treat it like that. I treat myself like, it’s a small child that patience and love. And, you know, and I think, you know, for the most part, it’s worked. I mean, I still get frustrated at some things.
Andrew Stopps 42:14
But nowhere near like, I used to log I used to have put stamping, you know, screaming tantrums, like a two year old. Because I you know, I dropped something right? You know, I was clumsy. It was almost funny. You know, the way it was?
Bill Gasiamis 42:31
We can be our own worst enemies for sure. In that way in, in, we can put the most pressure on ourselves and anybody? Oh, God. Yes. Yeah. But it’s why you have awareness of it now. So that’s great. So you know, the pub sound that you put in the background? Have you therefore because of the sensory overload? Because I did this avoided going into public places?
Andrew Stopps 42:54
Yep. Yep. And my husband has been really good with knowing how far to push me and knowing when I’m overloaded, he’s, he’s got really good sense of it. And so and knowing when I just want to be lazy, so if I’m just being lazy, who pushed me to do something, and so we’ve gone to cafes and restaurants and, and been there and and when he sees me starting to fade, he knows I’ve reached my overload point. And we just go.
Andrew Stopps 43:30
And it’s been really good, because I’ve been able to extend the time I could spend in those places. And I’m, and Monday nights this Monday, I’m doing something new. So I’m, I’ve just rolled in a postgraduate composition program. And the the lecturers and the students are meeting in a pub for a pre lecture, pre lectures, drinks, and meet and greet.
Andrew Stopps 43:59
And I wasn’t in the gut first, I thought, now I’m going to try this out. I’m going to I’m going to go for as long as I can, you know, handle it for and and see what happens. So yeah, so Monday, I’m going to rock along to this pub and see if I can stand it. Yeah. I mean, they know I’ve had a stroke. So if I have to go, just go.
Bill Gasiamis 44:18
Yeah, I think I think that’s a great thing to do. I stopped saying no, and then I started going, and then we would just leave earlier. A lot of our parties that we went to during that time, family birthdays, things like that. For me, that would have ended at nine o’clock or 930. We just had to go ahead to go and we went home. And then as the years went on, and the recovery continued. I found myself being able to be there a little longer, a little longer.
Bill Gasiamis 44:49
Yep. But I remember and I’ve even done the one to three o’clock in the morning from time to time, but last Friday, so a couple of days ago today Are we recording on Sunday morning are windy up, and it was really hot in Melbourne. And I think I was dehydrated. Because I remember really struggling by about 1130 To get back to the car, as in, I was walking fine and I got there. But I remember really not being able to feel my left leg and my foot underneath.
Bill Gasiamis 45:20
So I had to pay attention to walking, which is something I haven’t done for a while, like really pay attention to make sure. And then I could really feel my balance was out. So most of my time now is really great in that my deficits don’t get in the way, I don’t notice them too much.
Bill Gasiamis 45:39
Especially when I’m walking in this friends and we’re chatting, you don’t notice them, I just keep walking. Whereas this time, in our conversations that we’re having, while we’re walking, I had to really pay attention and notice where my foot was. Now, I haven’t done that for a while. And that kind of took me back a few years to when I first got out of hospital after brain surgery where I had to where we were at, we were at a event and there was a dance floor.
Bill Gasiamis 46:07
And there was necessary for people to get up and going dance at a certain point in the in the Proceedings of the night. And I was on the dance floor. But I wasn’t dancing. I was standing there just moving, paying a debt looking down and paying attention to my leg and moving it strategically around the place.
Bill Gasiamis 46:30
I don’t roll an ankle or do some damage in that moment. Yeah, whatever. Yeah. So it’s it gets it gets for me, it gets better and better and better and better. And then every once in a while there’s that reminder of this is how far you’ve come like this is what it was, like, X amount of years ago.
Bill Gasiamis 46:55
And that’s usually because I’ve done something to neglect my self that day, whether I haven’t slept enough the night before, or whether I’ve eaten something I shouldn’t have, or whether I I’ve haven’t deep, I haven’t drank enough water.
Bill Gasiamis 47:13
Something I’ve done has impacted that in a negative way. And that’s kind of the part where I get in my own way unknowingly. And then I’ve got to have a little bit of a reminder, and a bit of reminder, the reset and then it’s like okay, focus again.
Andrew Stopps 47:28
So, so two things come out that I need to ask you, firstly, are you less tolerant to heat now says since
Bill Gasiamis 47:37
Yeah, yeah, but only on half. So half my side. Really? Yeah. So my left side is the only part that’s less tolerant I love the hate Bill loves the hate my left side. doesn’t do too well with it kind of shuts down quicker. It gets fatigue, hate hate fatigue quicker. Yes. Yes.
Bill Gasiamis 47:59
And also the cold. So the cold Yes. Oh my god, which I really dislike build dislikes it. My left hand side dislikes that even more than build dislike, so we hate the cold together. We don’t mind. But the heat fatigues me quicker. Yeah.
Andrew’s Continued Recovery From His Stroke And Hearing LossAndrew Stopps 48:17
Yeah, I mean, New Zealand’s not known for its heat. And I’m in Wellington. Sorry, it’s even less so. But um, a few weeks ago, we were having timber stopped me 30 Which is really hot for here. And I just found it was wiping me out like, totally, I was getting, like heat fatigue so quickly.
Andrew Stopps 48:38
And I was like basically laying up in front of an air conditioner with a winter coat back on my head because I could not function. And I was really surprised that I was that affected by the heat.
Bill Gasiamis 48:50
Early on, I was that affected as well. So as things have improved, and time has passed, and I’ve become more resilient to it, but early on, it was like that, even though I was enjoying being in the heat. I still was protected by and couldn’t participate for example at the beach in the same way that I would normally have participated before the stroke. So now for me the beach, I’ve got to be covered otherwise I don’t want to be there by an umbrella or a tree or in the shed and before that wasn’t essential that wasn’t necessary.
Andrew Stopps 49:26
Yeah, yeah. Yeah, the same with me because in Andrews the same Andrew love the heat, especially, you know, growing up in Adelaide is less like you know, nice and
Bill Gasiamis 49:38
the Adelaide weather a couple of days later, right. So yeah, yeah, you know exactly what I’m talking about.
Andrew Stopps 49:44
I totally and yeah, now like, you know, I wouldn’t go back to Adelaide for a holiday in the summer because we’re not Not at the moment anyway, because it would just destroy me I couldn’t function. But But the other thing that I was going to ask or mentioned And from what you said, was your continued recovery.
Andrew Stopps 50:04
So it’s been 10 years, and you’re still recovering, I was told that my recovery would finish at six months. That’s a lot of bullshit. Yep. And so I was racing and panicking to get as much recovery in six months, I could have a pulley where I rented a hyperbaric chamber for three months.
Bill Gasiamis 50:27
Excellent. Well, we’re going to talk about that a little bit as well, you’re going to tell me about that. But let me just go back for a second guy. There’s no such thing as recovery for six weeks, six months or whatever, and it stops, it does never stop. I’m always doing things to try and improve my deficits.
Bill Gasiamis 50:45
And to try and be better than I was the day before, always has never started. And some days, that means doing nothing, that means actually going, You know what, today, you have to do nothing. Because if you go too far, today, you’re going to be screwed for the next two or three days. And there’s no point doing that.
Bill Gasiamis 51:03
So I get into that stage, every so often. But the amount of times I find myself there has reduced, and the time between the last time in this time, has grown apart. So that’s why you, you experience you experience all these things, but in lower, what’s the word like it’s lower, I’m going to use the word volume at a lower volume at a lower level.
Bill Gasiamis 51:29
So I get the reminders of what it was like, in 2014, when I had surgery and what it was like in 2012. But when I had the first blade, but it’s not as dramatic and as intense as it was back then. It’s just a more milder version. Yeah, I just, if I if I don’t take recovery, if I don’t consider myself still in recovery.
Bill Gasiamis 51:58
And I go back to doing some of the behaviors or the habits or the patterns that I was in. Before my whole situation started 10 years ago, I’m going to suffer really, really badly, because of it that I had back then was resilient, enough more resilient, to deal with all the junk that I was doing to it.
Bill Gasiamis 52:19
Right now. It’s not going to cope, I’m going to suffer dramatically. If I go back to those old routines and old ways of being myself and doing myself and you know, treating myself, it’s not going to work. So yeah,
Andrew Stopps 52:35
it’s it’s interesting, I pride to to ponder on why doctors or physios insist on telling people that they will see the most gains in six months, and then not to expect anything or very little after that. And, you know, I think maybe the trying to give people false hope, or maybe because a lot of the people that they do see sort of aren’t as motivated, or just
Bill Gasiamis 53:04
there is a technical reason and actual reason in the brain that happens. So there’s that. Now for people who are listening, I’m gesturing with my hands, and you can’t see it, but I’m going to try and explain it at the same time. So there’s the area of the brain that was damaged the damaged spot, and then there’s the area around that, that has been impacted, but not damaged by the stroke.
Bill Gasiamis 53:29
So it’s kind of like it’s like a target on a bullseye. So there’s the bullseye where the area has been damaged. And there’s the next ring out. That next ring is called the penumbra. And usually, it is damaged, it is impacted and kind of put to sleep. But then, when the penumbra comes back online, people see the most gains. That’s where the gains come.
Bill Gasiamis 53:57
That comes back online far quicker. Because as the stroke quality ischemic stroke or the hemorrhagic stroke is dealt with in the actual location where it happened. Even though the brain cells around there would be dead and not firing the way they were the area around it, The Penumbra is going to be just negatively impacted. And then it’s going to start settling down. And then as it settles down, you see the most gains.
Bill Gasiamis 54:29
So they go after a lot of recovery during that time. And they know that they can encourage recovery because they know they’re going to benefit from the penumbra coming back on board. Right so that’s why they say that they don’t have a good way of describing it. And they don’t explain it properly. And they don’t even tell Yeah, yeah. And and then there is a combination. I will also not set the expectations too high, because we don’t want to disappoint them.
Bill Gasiamis 55:03
And we don’t want to give them hope, where there isn’t any. And they’re doing it from a perspective of a non stroke survivor. Even though they’re working stroke, even though they understand what’s going on. They are they’ve never lived the experience. And they are coming at it from somebody who is naive in that space.
Bill Gasiamis 55:25
So there’s a couple of things kind of working against them to give us the appropriate information about what is happening and why they say what they say about the six month period. recovery continues forever. I know people who have interviewed who have said that had an arm movement came back 10 years later.
Bill Gasiamis 55:46
Wow. And that was by Imagine, not that they would know. But I imagine it was because what we spoke about earlier, I learned non use, yes. At the beginning, they thought their hand isn’t working. Therefore they didn’t use it. They weren’t encouraged to butter their bread with the effect at hand. And 10 years down the track.
Bill Gasiamis 56:09
The hand was just sitting there idly by waiting for somebody to rehabilitate it. And when they got curious about it, and thought, of let’s see if I can get something back with this. And let’s see if I can rehabilitate it. That’s when the hands started to go. Yeah, thanks for that. Appreciate. Yeah, I can have the hand back, you know?
Andrew Stopps 56:29
Yeah. Like, because I wish someone explained it to me, because that’s, that was, is so clear, and is so like, it’s so obvious to me now, how in the brain hills. Because I just remember thinking that I had this time limit, and yet I’ve seen constant improvement past and emitted in like given to last week, you know, I’m seeing improvement.
Andrew Stopps 56:59
But I don’t think I think it’s not really appropriate for the physios to be giving devices that help people or aid people to use their non non effective side. Like, let me think of something like devices that help you hold a knife like, you know, properly or just just, or in a car, like a steering wheel device who you have to, you can do with one hand.
Andrew Stopps 57:38
All those things, you know, are great, if you have actually only got one hand. But if you’ve got another hand, you’ve you’ve, you’ve got to use it. You’ve got to use it.
Bill Gasiamis 57:51
Yeah, I hear I know exactly what you mean, there’s there is kind of a decreasing of this. That’s it’s also guided by the people who are recovering, right? So there’s some people who will go, and fair enough, I need to drive a new drive now. And I can’t drive with one hand, I need a steering wheel knob thing, whatever.
Bill Gasiamis 58:15
Yeah, called, you know, get get it for me. And so complicated, this whole recovery, and every stroke is different. And everyone’s impacted by differently, and some people aren’t going to get their hand back. Whereas some might. I think that everyone’s has to go after getting it back and see if they can. And then if they can’t, for sure, we need to make sure that people are able to still be not go
Andrew Stopps 58:40
straight to the aids like because they’re impatient. Yeah. Because impatience can drive you to, you know, to doing those and then not using your affected side.
Bill Gasiamis 58:53
Yeah, I was speaking to some stroke, two stroke survivor yesterday. And we’re talking about some of the things that get in the way of helping recovery as well. And I’m going to mention it now because this particular stroke survivor wasn’t told to stop drinking alcohol. And the Australian Stroke Foundation says you have to stop drinking alcohol for at least 12 months. I didn’t drink alcohol for five years.
Bill Gasiamis 59:18
One of the reasons is because the brain is brain is already inflamed. And what alcohol does is inflames it further. And what, what they want to do? Well we want to do is we want to decrease the things that inflame the brain, so that we can give it more chance for the neurons that are sleepy to come up to come awake, so that we can utilize them and then support them and strengthen them.
Bill Gasiamis 59:43
So the reason I mentioned that to this other gentleman was because he was waiting to get his skull reinstalled in his brain because they removed it when he had his stroke because he had a lot of swelling and inflammation. If the doctors are saying to him until the inflammation goes down, we cannot put the skull back in place.
Bill Gasiamis 1:00:07
So he’ll eventually get it back. And when he told me that and told me at the same time, or a few minutes later told me that he was drinking a couple of beers every so often. I realized that he’s getting in the way of getting his skull back. Yeah, he’s continuing to do things that will inflame the brain will keep it swell, swelled, will will stop them from putting the skull on.
Bill Gasiamis 1:00:33
And the thing that he’s most motivated to see is this callback on his head, so that he’s going to feel more like himself is going to start to identify himself much. And even those types of things in I would have thought that in this situation, he would have been told, in no uncertain terms, you should not be doing any of these things.
Bill Gasiamis 1:00:56
One of them being drink alcohol from now on. Yeah, so would I, but especially when you’ve got like nerf skull, yeah, but it was missed, right. And that’s the thing, sometimes we get in our own way, because we need to go back to what you said, Life, or the way we used to do things quickly, because we’re impatient. And we don’t understand that there’s a, there’s been a line drawn in the sand and things are different now.
Bill Gasiamis 1:01:22
And our old patterns of behaviors need to be modified because they don’t serve, some of them won’t serve us with this new way that we have to go about life or your skills that we have to learn or the stuff we have to overcome. And it’s really important to be able to kind of understand that there has to be a shift what was good for you before stroke may not be good for you now and you can just park it pocket for now.
Bill Gasiamis 1:01:49
And pick it up later. If it’s worthy. If it’s worth it, you can pick it up later. But for right now, some of those things you have to park one of them 100% is alcohol. So I’m not sure if you were told about alcohol.
Meditation And Hyperbaric ChambersAndrew Stopps 1:02:01
No, it wasn’t, but I don’t really drink anyway. So it’s like, you know, I wasn’t me since the tumor. And alcohol had a different effect. I mean, it wasn’t pleasant. So I stopped drinking. And so
Bill Gasiamis 1:02:16
back to you like so for me, I don’t drink because it makes me feel like I’m having another stroke.
Andrew Stopps 1:02:22
For me. It it made me feel sick. Yeah. Yeah. It just wasn’t pleasant. It led it wasn’t a pleasant feeling. And so like, so I stopped drinking years ago, after after the tumor, and so yeah, like, now, you know, having a stroke. I haven’t missed it. So but but I know a bit about the inflammation as well, like, like, I’ve been reading about that. So I, I mean, that’s one of the other reasons I got the hyperbaric was to try and reduce
Bill Gasiamis 1:03:00
the inflammation. Let’s talk about that. Yeah, like climbing into a hyperbaric chamber. And how long does it last for how long does it take? And what do you notice?
Andrew Stopps 1:03:10
So I, I had it for three months in the house. It’s like a really thick plastic tube. And it has a little seat inside it. And basically, your breathing, really, through a mask or a cannula in your nose, really, highly oxygenated air. Almost, you know, 100% Pure bubble close to it.
Andrew Stopps 1:03:37
They raised the the air pressure inside the chamber to one and a half or two times the normal air pressure. So what it does is it forces the oxygen into the cells. I found I was in the chamber for an hour and a half every day. And I I couldn’t wait to get in there. It was I loved it. It was like having a little little cocoon.
Andrew Stopps 1:04:03
I just get a blanket in there. And I had my headphones and listen to meditations. And I would just meditate. guided meditations. And just doing that for an hour and a half every day it was it was the best. I mean, if I could afford to buy one, I’d buy one. I just did. You know, it was so good. So good.
Bill Gasiamis 1:04:23
Did you notice improvements in the deficits that help in that way? Is that what you experienced?
Andrew Stopps 1:04:30
Yeah, well, well, I did actually. But you know, I don’t know if it’s it was the the act of the hyperbaric and the oxygen or it was the fact that for an hour and a half every day
Andrew Stopps 1:04:43
I was meditating and I was calm. And I wasn’t thinking about everything. Or a combination of both. I don’t know what it was but I definitely saw improvement. combination of both for sure. Absolutely.
Bill Gasiamis 1:04:55
Meditation is is like a superpower if you can meditate and you You can put yourself into a state of calm and create the right environment, healing will happen it does.
Bill Gasiamis 1:05:07
But then the hyperbaric doing it in hyperbaric with oxygen in that state is definitely an Amen. What a combination of the two things to do. I love that you meditated. So you’re, are you meditating, sitting down lying down? How do you
Andrew Stopps 1:05:26
so it’s like it, you kind of get a either seat in there and, but it’s sort of laid back seat. So it’s, it’s not an upright seat. So you’re kind of laying back in the seat. It’s really, really comfortable. And you and you have a I had a thick blanket in there as well.
Andrew Stopps 1:05:43
So I was cocooned in this chamber, and the chamber gets really warm after a while but not like uncomfortably warm, but just nice warm. So yeah, it was just such a safe space. Especially after the stroke, you know, and when everything in your world is is chaotic, it was such a nice, calm, safe space for me. I really loved it.
Bill Gasiamis 1:06:13
Have you been able to recreate that feeling? Same bed with a warm blanket?
Andrew Stopps 1:06:21
Yeah, well, I still keep on meditating. Every day. I’m just on my bed, but with a with a warm blanket, but it’s not the same same. You know, it’s like I have an eye mask as well. So it’s a you know, a blackout. But yeah, there’s some there’s that one element missing? Yeah, look. Yeah, yeah.
Bill Gasiamis 1:06:46
Yeah, I love it. So what has stroke taught you?
Andrew Stopps 1:06:52
Oh, my God, so much, so much. I mean, where do I start? I guess the most important thing, the the most important thing has taught me is that Andrew stops is potential. Andrew stops us not musician, or husband or educator, or any of the other labels that that society gives us. Andrew stops as potential. That’s, that’s what it’s told me.
Bill Gasiamis 1:07:28
It’s brilliant. I love that. On that note, Andrew, thank you so much for reaching out. And being on the podcast. I really appreciate you connecting with me. And I’m so happy to have you on the show. And I’m glad that you’ve come such a long way, especially since you’ve had that experience earlier on in your life in your mid 20s. And, and striking that you’ve come out of both of those. And you still talk about your potential. I love it.
Andrew Stopps 1:07:58
Yeah. Yeah. Thanks. Thanks a lot. I really enjoy being here. Thanks for having me.
Bill Gasiamis 1:08:03
That’s right, man. Oh, wow, what a chat, Andrew, thank you. I’m gonna edit this and put all my intros and outros in. And it’ll be up in about two weeks. I’ll let you know when it’s up. Yep. I love your work, man. I love what you’re doing. Congratulations. And keep going. If there’s anything you need from me just reach out. If you got to ask if you’re not sure about something, if you want to do the old did this happen to you? Or just let me know.
Andrew Stopps 1:08:32
Yeah. Yeah. Like, I was really, like, I had such an aha moment when you were describing what happens in the brain. Like with the penumbra, like, Oh, it’s just going oh, my God, why didn’t someone tell me? This is genius. That was perfect. Thanks, man.
Bill Gasiamis 1:08:49
You’re welcome. And it’s the same thing that I went through. I had to do constant and never ending research. You google you name it. And then yeah, I was getting these aha moments again. Okay. All right. I can, I can breathe a sigh of relief, I can deal with that. I can approach it differently.
Bill Gasiamis 1:09:07
It’s just I don’t blame doctors and nurses because they do a great job. I mean, without him, we wouldn’t be here. But somebody, there’s going to be some middle person, a liaison that says, here’s a thing. And all it is is like a list of words or stuff. And then and then there’s a paragraph in the middle of the book about it. Just go there and have a bit of a look.
Andrew Stopps 1:09:32
Yeah, well, well, I’ve contacted the local hospital a couple of times now, and just said, Look, can I go in and just sit with newly stroke patients and just answer any questions or just talk to them about their experience? Because, you know, as a teacher, I’m like police checks and everything so that I don’t have to worry about any of that.
Andrew Stopps 1:09:56
But that’s it’s too hard for the hospitals to organize it Um, and which is such a shame because like, from the oldest stroke survivors I’ve talked to, they will, you know, they all said they would love to have had someone, they could just sit with them for 20 minutes, you know, in the hospital and just, you know, show them what’s possible.
Bill Gasiamis 1:10:15
Can you not do it even as a just a guest to the ward? Like? Can you not even just be somebody who turns up and goes for a walk around the ward?
Andrew Stopps 1:10:26
I don’t know. I mean.
Bill Gasiamis 1:10:32
I mean, with their blessing. You know how sometimes. There’s preachers that go around or I don’t know who but there’s sometimes there’s some advocates that you see flooding around the place. I wonder if they could just let you do it like that?
Andrew Stopps 1:10:48
Yeah, well, there’s a Stroke Foundation here. But they’re so underfunded. And I’ve tried to work with them. And like, I mean, even when they came out to visit me, they didn’t come to visit me two or three months after my stroke. And they stayed for like 20 minutes and gave me some pamphlets and left.
Andrew Stopps 1:11:04
And it was useless. So I’ve tried to approach them as well, to ask, you know, if they could organize for me to go in hospital, I really like to do that. I really would like to do that. Because, you know, we we both know how scary it is. You know, when you’re laying in hospital, and you don’t know what the hell’s going on.
Bill Gasiamis 1:11:28
They need reassurance I immediately seek out somebody through the family that had had a brain hemorrhage in his 20s as well. And I never met the guy before, but he just happened to turn up on my doorstep, literally two bloody weeks before my brain surgery. And he had had brain surgery.
Bill Gasiamis 1:11:47
So it was like, oh, man, this is exactly what I needed. We went through a real lengthy conversation about what to expect and what’s going to happen later and all that it was absolutely a game changer. I went into surgery instead of being anxious and afraid. I went in, being really calm and confident. Just changed everything.
Andrew Stopps 1:12:11
Well, I knew that my dad had a stroke. In the early 2000s, my dad passed away in 2018. So I couldn’t talk to him about it. But I remember, he had had a stroke. And like, he fully recovered, like literally, like we would never know, for the latter part of his life. And so I just kept hanging on to that.
Andrew Stopps 1:12:35
Like, if my dad can have a stroke and fully recover, then so alive. But yeah, I would have really liked to just had someone who, you know, I can ask questions. Is this normal? is filling this normal? Am I having another stroke? It was that normal, you know?
Bill Gasiamis 1:12:54
Reach out anytime, honestly. Well, yes, I mean, it just send me an email. I always get my emails and we can do a quick catch up zoom call or whatever. Or we can just send you a message back. Anytime now. Oh, lovely. Thank you. That’s great. Just give me just give me a 7am Start by around 7am is when the world is okay for me anything before that?
Bill Gasiamis 1:13:17
Then I’m stuff. No, no worries. All right, my appreciate it so much. I will get in touch with you and let you know when it’s live. Okay, thanks a lot. Have a great day. See ya. Thanks for joining us on today’s episode to learn more about my guests including links to their social media and other pages.
Bill Gasiamis 1:13:39
And to download a full transcript of the entire interview. Please go to recovery after show.com/episodes. If you’d like to try the course by foods to avoid after stroke, go to recovery after stroke.com/courses and get on board now. If you would like to support this podcast, the best way to do it and I will really appreciate it if you do is to leave this show a five star review and a few words about what the show means to you on iTunes, and Spotify.
Bill Gasiamis 1:14:09
If you’re watching on YouTube, comment below the video. Like this episode and to get notifications of future episodes, subscribe to the show on the platform of your choice. If you are a stroke survivor with a story to share about your experience, come and join me on the show. Interviews are not scripted, you do not have to plan for them.
Bill Gasiamis 1:14:28
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Bill Gasiamis 1:14:40
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Intro 1:15:01
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Intro 1:15:55
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Intro 1:16:25
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Michael Andrew Petersen experienced a hemorrhagic stroke due to a vertebral artery dissection and struggled with Memories after the stroke. His doctors are amazed that he is doing so well and not experiencing physical deficits that some other people with conditions similar to his experience.
Highlights:
00:47 Introduction – Michael Andrew Petersen
02:28 Michael’s Memory Loss After The Stroke
17:40 What Is A Vertebral Artery Dissection?
28:44 Heart Memory And Stroke
34:57 Expressing Emotion In A Different Way
42:50 How One Word Can Change Your Life
48:35 Why Michael Hasn’t Been Able To Get Back To Work
1:06:13 The one thing that most people don’t tackle in recovery
1:12:03 Michael’s Experience And How It Changed Him
Transcription:
Michael Andrew Petersen 0:00
It’s been, you know, almost 11 months, but it’s been the recovery, for me at least has been, and I know my wife’s gonna cringe and my daughters are gonna cringe when they hear me say this, but it’s been really lonely, It’s been the loneliest time of my life.
Michael Andrew Petersen 0:17
And I don’t know if that’s common even in rehab, hospital and day rehab. I’ve been surrounded with other people that have been going through the same damn thing, but it’s a lonely process.
Intro 0:34
This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.
Introduction – Michael Andrew Petersen
Bill Gasiamis 0:47
Hello, and welcome once again to the recovery after stroke podcast. This is Bill Gasiamis. And this is episode 240. And my guest today is Michael A. Peterson who experienced a stroke due to a vertebral artery dissection, amongst other things that incident impacted Michael’s ability to access his memories, and also made him a little more emotional. Michael A. Peterson, welcome to the podcast.
Michael Andrew Petersen 1:16
Thank you very much. Thanks for having me.
Bill Gasiamis 1:18
Absolute pleasure. Tell me a little bit about what happened to you, Michael.
Michael Andrew Petersen 1:23
Well, I did something tonight Bill that I probably wouldn’t recommend. But in preparation for this, I went back through now that all medical records in the United States are largely digital. I went back and I read through the first couple days of being at the ICU, which scared the living hell out of me.
Michael Andrew Petersen 1:52
So why was I in the ICU? On September 12, it was a Sunday night. You know, kind of not unusual. We had neighbors over and bunch of little kids running around our house, both of my girls are now in college. So they were off at university and my wife and I had a nice dinner with family and friends. And, you know, I distinctly remember sitting over right over there by my fireplace with one of my young neighbors and playing with a set of Lincoln logs that I played with as a little kid.
Michael Andrew Petersen – Memory Loss After The StrokeMichael Andrew Petersen 2:28
And I remember having like a dull headache all day. But I didn’t think anything of it. You know, it didn’t impede the night too much. And then my wife and I were just camped out on the couch watching Netflix. And she went upstairs to change. And she said all of a sudden, she heard a noise and she yelled at me. Like I had stumbled into something and stumbled into a shelf and knock something down.
Michael Andrew Petersen 3:01
And I didn’t answer her which she thought was odd. And she knew something was off. And she came right down. And I was standing in my kitchen kind of leaned over my sink, like I was going to be sick. And she said are you alright? I looked at her and she said, all you told me was to call an ambulance that I needed to go to the hospital.
Michael Andrew Petersen 3:30
And I’ve listened to enough of the podcasts that you’ve done and others have done to know that it’s not so strange, but I have very little memory of that first month, like almost none, which is another reason I found it so intriguing to read through the medical notes. So my wife called the ambulance I’m standing in the kitchen. The people on the 911 tell her to get me down to the ground.
Michael Andrew Petersen 4:03
They said the worst thing that can happen to your husband is having a fall. They suspected a stroke right off the bat. And they said get him to the ground and wait for the ambulance. So the drivers got here and you know, they got me into a pulled up right into my driveway got me into the ambulance. And no sooner did I get into the ambulance and you know, all that blood that was on my brain told my heart to stop.
Michael Andrew Petersen 4:39
So I went into cardiac arrest. I just read the reports. Like it’s really detailed Bill, it’s crazy, like how many compressions and you know for how long and it’s it’s scary. So I went into cardiac arrest about three different times. Once in my driveway, once at the hospital, and then once when they were taking me to the stroke center.
Bill Gasiamis 5:05
It looks like you’re getting a little bit emotional reliving this.
Michael Andrew Petersen 5:15
Yeah, it was pretty emotional. I mean, I couldn’t help but I literally I had just listened to I think your episode 100 that you did with your wife. And I mean it brought a lot of it back to me and I just I mean that episode for me it was very special and I made my wife listen to it as well, because I haven’t been able to thank her. Because she did everything right. She did everything right.
Michael Andrew Petersen 5:51
And I just I can’t imagine her having to try to resuscitate me on the on the kitchen floor for God’s sake. You know, like I just, I’m so glad that she took it seriously enough. She called the ambulance she got the professionals here. Because I mean. Not a lot of people can say this about their spouse, but I can honestly say that I owe my life to my wife. She literally saved my life.
Bill Gasiamis 6:20
Yeah, yeah, you know, you are still there to argue with her though, right? So she did save your life. And arguments that happened in the future are still legit, they’re still okay to do. And she’s from time to die. She’s allowed to be, you’re allowed to call her out when she’s wrong. Because doesn’t matter that she saved your life. Sometimes she can still be wrong as all spouses can. And I struggled for a little bit of time after I took her down.
Bill Gasiamis 6:54
I had to take my wife down from the pedestal a little bit as well. Yeah. And we had to get back into the routine of being married and normal and all that kind of stuff. And part of that was to argue about the stupid things. And part of it was to argue about all those things that we say it’s insignificant. I know, I don’t know why I should have I why we argued about that. But they’re important because they get you to they get you too.
Bill Gasiamis 7:25
It’s part of communication. It’s a part that we don’t prefer if we stay there, it’s not nice. But we do we do have to have arguments without our significant others in our spouses. Right. So she did do the right thing.
Bill Gasiamis 7:40
She’s nailed it as far as all of the all of the things that you would hope that somebody gets to experience during an illness is that they get to experience the clear mindedness, the rationality, the action taking of the person that’s opposite them or near them or wherever.
Bill Gasiamis 8:02
And some people don’t know how to respond, because I, I know that for a long time, I was downplaying all my issues. And because I appeared well, and I did a lot of downplaying of it. It did make my wife second guessed some of the things that she was feeling instinctively, but it doesn’t sound like you had any opportunity to downplay anything.
Bill Gasiamis 8:24
Was there any lead up to that event? Did you notice anything coming up to that event? That you now on reflection, go wow, that was probably it.
Michael Andrew Petersen 8:38
Not necessarily, you know, like, it’s, it’s really strange, like, outside of the fact that I did have, you know, I don’t suffer from headaches, I never have, maybe as a little kid or whatever, I’m sure. You know, I think I remembered something or other but but not as an adult. So it was unusual to have this trailing headache for three, four days. And I kind of blamed it on you know, I very rarely, very rarely go out in the middle of the week for a beer or whatever.
Michael Andrew Petersen 9:10
And I I’d gone out on a Wednesday night with some buddies and did this microbrewery and had a beer too. And I just remember thinking, gosh, you know, like, I’m not doing that again, because that I just can’t shake this headache from that. And meanwhile, you know, like, I didn’t realize, you know, like, I had a dissected artery, you know, that was, you know, you know, pushing blood into my brain, you know, for round about three, four or five days.
Michael Andrew Petersen 9:46
So, you know, it’s, I don’t really recall. And I think that I think at least from what I’ve heard, and a lot of other people recounting stories is that that a lot of my memory memory issues stem from even the time like once that, that blood starts getting into your brain, it’s it’s, it’s doing things that you don’t realize, and it’s clouding that. But I spent a little over two weeks at the local hospital, the ICU. And I mean, I’m a, I’m a visual person.
Michael Andrew Petersen 10:27
That’s what I do for a profession. My at the rehab hospital, I could I could sketch you, Bill, I could sketch you in intricate detail my room, and I could point out details that you wouldn’t believe. I don’t remember one thing about the room at the ICU.
Bill Gasiamis 10:46
Just a quick break and we’ll be right back to the interview. As a stroke survivor, I understand the difficulties of finding the right information about post stroke nutrition. That’s why I developed a course by foods to avoid after stroke. While most people are talking about what to eat after a stroke to support brain health, and recovery, very few are talking about what you should avoid eating after a stroke.
Bill Gasiamis 11:09
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Bill Gasiamis 11:27
From a qualified nutritionist Stacy Turner and performance coach Mathias Turner. In the more than five hours of interviews, we discuss the five common foods that cause inflammation in the body and brain and how they could interfere with healing and how they may make fatigue worse, for just $49.
Bill Gasiamis 11:46
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Bill Gasiamis 12:18
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Bill Gasiamis 12:39
Once again, you’ll get more than five hours of content, all audio is available to download in mp3 format for listening on the go full transcript of all the content to take notes on or read instead of listen to presented by a stroke survivor four stroke survivors. also presented by a trained nutritionist and performance coach, you will also get 24 hours of access, lifetime access to courses purchased. And you’ll be able to interact with yours truly, in the comments section.
Bill Gasiamis 13:11
Go to recovery after stroke.com/courses to check them out now.
Michael Andrew Petersen 13:16
Not I couldn’t tell you one day I couldn’t tell you if the walls were white. Like I have no idea. I wouldn’t I wouldn’t be able to tell you give you one detail about any of it. Yeah. Which is amazing to me. Like it’s it’s kind of strange to me. But
Bill Gasiamis 13:34
I relate to a lot of the people who I speak to about stroke. It’s kind of like a out of world experience. It’s you’re in the world, but you’re not in the world. It’s kind of like zoned out should be kind of experienced. That’s how I I felt. And there wasn’t a lot of things that made sense until people explained them to me later.
Bill Gasiamis 13:55
And now I think I have a memory of their explanation rather than the actual memory of being there. And it’s not uncommon because there’s the brains in just a completely different phase or space or it’s operating under duress. There’s a whole bunch of different things going on. So how long did you end up spending in hospital?
Michael Andrew Petersen 14:21
So I was you know, it’s interesting I’ve been, I’ve been I’ve been telling the story wrong for and it’s it’s probably it’s a I’m sure my wife will will pinpoint all of the inaccuracies for me when she listens to this. But I found out tonight that I thought I was in the ICU for about three weeks and it was it only turned out to be a little over two weeks. Because I was able to look at the dates in which I was there and then I was immediately transferred.
Michael Andrew Petersen 14:53
I don’t really start to make memories until I was in a like a little meta taxi and I live outside of Chicago in Evanston, so just north, and I was fortunate enough to do my rehab at at surely Ryan ability Lab, which is kind of becoming a renowned Rehabilitation Hospital in the in the Chicagoland area. So I was fortunate enough to be able to, to, to get a place there. And my wife worked really hard to get me in.
Michael Andrew Petersen 15:24
But I don’t really start to form memories until I was in this little meta taxi that they took me into get me from, you know, north of Chicago down into the city of Chicago. And the guy was such a terrible driver that I was just like, and I’m in the middle of this little, you know, van on a gurney and getting thrown around.
Michael Andrew Petersen 15:45
And I’m like, I don’t know, I don’t know where the hell I’m at. I don’t know, what am I doing in this thing? I don’t know where I’m going. I don’t have anybody to ask because I’m by myself. And but I can see, you know, like I’ve run these lakefront paths my entire life, and I know exactly where I’m at.
Michael Andrew Petersen 15:45
And I know I’m going downtown. I just don’t know why. And then the strangest thing was, is I, I don’t know where the hell I’m at. And I don’t know why I’m in there. But I know that I don’t have much sensation in my legs. And that scared the hell out of me.
Bill Gasiamis 16:25
You need to be there, you’re going somewhere where it’s necessary for you to go. But you don’t know why or how or what, you know, details around the budget kind of going with the flow of this drive, ya know much about?
Michael Andrew Petersen 16:40
Well, and then, you know, because of the pandemic or the COVID protocols, my wife had to be able to test into the hospital. So she had to go through testing before they would let her go in. So that first day, I showed up at the rehabilitation hospital.
Michael Andrew Petersen 16:57
And there was nobody there to tell me what the hell had happened. I didn’t realize like, until the, it took a two or three days of me, you know, because I had to take it in slowly. But I just I like over the course of the next three, four days, my wife had to tell me everything that happened.
Michael Andrew Petersen 17:24
And she had to tell me all that it had gone on. You know, I mean from, you know, the stroke, to go into the hospital, the cardiac arrests to the, you know, all of it.
What Is A Vertebral Artery Dissection?Bill Gasiamis 17:40
You know, what I just what’s rare is the people that I’ve interviewed that have had vertebral artery dissections or any other artery dissection, it’s very rare that it’s a hemorrhagic causes a hemorrhagic stroke. So normally, it causes an ischemic stroke, because the tear happens on the inside of the blood vessel, and it creates a flap that changes the blood flow, and causes a little low and high pressure system inside and forms clots and the clot travels up.
Bill Gasiamis 18:13
So the the artery is still intact on the outside. Whereas what’s happened for you is the artery has dissected from the outside causing a hole in your artery and therefore a hemorrhagic stroke. And as a result of that, you’re because it’s such a large artery, then it’s leaking so much blood that the heart is having trouble regulating the blood flow, and it stops.
Bill Gasiamis 18:40
So a friend of mine who lives in Melbourne where I live, a guy that I met a couple of weeks before my brain surgery, he was driving his dad’s truck, which was their furniture there. They have a kitchen manufacturing, cabinet making business. And he was driving his dad’s truck full of cabinets to take to a particular job site crashed, had a vertebral artery dissection caused a hemorrhagic stroke, crushed the truck into a pole.
Bill Gasiamis 19:13
And when they got there, they thought that because he was a young kid, they thought that he was on drugs. The police called the phone number on the side of the truck, spoke to the dad and said to him, your son has been involved in a collision, what drugs is he on? And if that’s going, it’s not on any drugs man could get him some help or what have you.
Bill Gasiamis 19:32
And he was Andrew was telling me that he was going in and out of cardiac arrest because that would restart his heart that would cause further leakage. And then as a result of that he would bleed out then things would go out of whack then his heart would suffer big and then he explained to me what you explained and in the 200 or more episodes that I’ve done, you and Andrew Andrew has not been interviewed.
Bill Gasiamis 19:55
You and Andrew are the only two people that I’ve come across that have had that type of I’m dissection. So it’s very rare. And, and it sounds like it could be more catastrophic. But I am going to make a real general statement here, but you’re looking quite well, for somebody who’s had such a serious surgery situation. I know you’re not your former self. So where are you at compared to where you were? What are you dealing with that you have to overcome?
Michael Andrew Petersen 20:31
You know, it’s, it’s interesting, and, you know, in getting back to, you know, my, like I was, you know, I was I’m a runner I attended, I turned to running a number of years ago, because I’m in advertising. And I got out of college, myself, and I got into the business, and I put on a lot of weight that I didn’t need, that I had got married and had kids, and I decided at that point, I’m like, you know, my kids are too important.
Michael Andrew Petersen 21:05
My family’s too important. So I took the weight off, and I really did it by, you know, a good, one of my best friends, you know, got me into running. And that, that was not only was it did allow me to help and watching what I ate. But it got me to the point where I, you know, could do that. And I’ve since run a number of half marathons and full marathons.
Michael Andrew Petersen 21:31
And, you know, so luckily, I mean, I was at the point bill, where I was running 2535 miles a week, going into my stroke. So I think going into that, I was in probably the, you know, like, like, I’ve heard a lot from people doing these interviews, I was in the best health of my life go into into my stroke, which I think, inevitably helped me get through the recovery.
Michael Andrew Petersen 22:01
A lot better. You know, but when I, when I got to the rehab hospital, and I was, you know, didn’t have much sensation in my, you know, I was left side, so it affected my left side bleed right side was affected. And I, I just, I couldn’t feel my legs for the life of me. And then, you know, when you’re at a rehab hospital, it’s like, Hey, I didn’t, I didn’t, I didn’t know where I was, my wife wasn’t there, I didn’t have anything to wear.
Michael Andrew Petersen 22:36
And they’re like, you got you got a PT session. And I was like, I don’t think I have shoes. Like I, I didn’t even know where I was this morning. And, you know, like, to their defense, like, they, they found stuff for me, and they got me up and they got me moving. But that’s really, that was probably the best thing for me is to just get me up and get me moving.
Michael Andrew Petersen 23:02
And the stroke, just tore up my vestibular system. I, I’ve never had an issue with balance in my entire life. And I could not, I couldn’t walk straight line without tipping over. So, you know, I spent, you know, the first couple of weeks, learning how to walk again, without falling over, learn how to get up and down stairs. And then, you know, and then the real hard work started, it was like all of the, you know, all the cognitive work, and all the OT.
Michael Andrew Petersen 23:43
And that, that was probably even more frightening, you know, then, you know, than the physical stuff, the physical, like, I don’t know why. But I was convinced that was like, I was convinced that I was not going to let anything like physical stand in my way. You know, like I was, I just, I had in my head that I was going to whatever the obstacles were, I was going to work like hell to overcome them.
Michael Andrew Petersen 24:12
And then as you know, because you’ve been through a lot of this therapy yourself, you’re walking on a treadmill, and they’ve got you manipulating something in your hand. And all of a sudden, the OT starts asking you questions. So you’re now you’re doing, you’re walking, you’re manipulating something with your a ball in your hand or whatever. And they start asking you to name vegetables, start with a and go through Z.
Michael Andrew Petersen 24:37
And I got to I couldn’t, I couldn’t come up with one for D. And it scared the living hell out of me. And then it was like, Well, let’s not do vegetables, let’s do animals. And then the same thing would happen. And I couldn’t, I would just get stuck. And I couldn’t. I couldn’t recall any like, I knew what it was But I couldn’t believe it was like, it was like having your hard drive full of all these files.
Michael Andrew Petersen 25:06
And you know, you’ve created this file and you put a lot of time and effort into making this file. And you know, right where it is, but you can’t get to it. And if you can’t get to it, you can’t look at it. And then if you can’t look at it, you can’t read it back to the person that’s asking you the question. And the recall was the trickiest thing for me. But I, I write when I thought, like, I was like, in real deep trouble with, with my cognitive stuff.
Michael Andrew Petersen 25:35
And my memory, and I couldn’t remember anything. And like, I was really fearful that I just remember it was a weekend and rehab hospital on a weekend is not any place you want to be. It’s so lonely. It’s just so desolate. And they got me strapped up in this harness, because they didn’t trust that I wouldn’t fall over.
Michael Andrew Petersen 25:57
So I’m in the harness and walking. Yeah, exactly. Exactly. They don’t want this guy to tip over. And I hate I hated that belt that they that gait belt. Oh, I hated it, when they put that out there just made me feel like, so terrible. But I knew I knew why they were doing it.
Michael Andrew Petersen 26:19
But this group of this group of PTS that I got to know and they were, it was a week, it was a Sunday, and they’re like, Hey, do you do care if we put on a music like what do you like, and I was like, whatever you guys are listening to, I’m sure. I’ll like it. And I just remember, it was a it was a song by the cure that I used to play in my college radio days.
Michael Andrew Petersen 26:50
And, and I just remember it was is a song that’s very personal to me. And I just remember, all of a sudden, I caught myself and I, I was singing it in my head and under my breath. And I knew every word of that song. And I was like, it made me feel so good.
Michael Andrew Petersen 27:10
And I just it took me right back to a beach vacation that I was just on with my kids and my wife and my dear friends and, and I was just flooded with all this emotion of, of all these images of these friends of mine that are so close to these amazing people in my life. And I was just so comforted to know that I knew the song. I knew the lyrics to the song and I just felt like shit, I’m gonna be okay. Like x, I get it. There’s something up there and it’s coming out.
Intro 27:41
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, and doctors will explain things that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 28:06
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called seven questions to ask your doctor about your stroke.
Intro 28:25
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, and they’ll help you take a more active role in your recovery. Head to the website. Now, recoveryafterstroke.com and download the guide. It’s free.
Heart Memory And StrokeBill Gasiamis 28:41
I’m gonna actually throw a bit of a spanner in the works here. So I reckon I’ve got a hypothesis as to it’s not my hypothesis or something I came up with, but it’s something I’ve come to understand and learn about where you store memories. And you know how you hear about dementia patients who they don’t know.
Bill Gasiamis 29:05
They don’t know their head from their bum. But as soon as you put a song on, they get up and they start dancing and singing the words and remembering right? So and the reason you explained that as it was emotional. So what I think, well, my hypothesis is and there’s a bit of research to suggest that I’m kind of on the right track by other people, not by me. I haven’t done any research like that or studies, is that the heart has memory.
Bill Gasiamis 29:37
The heart also has neurons, it has between 30 and 120,000. People who are “heartless” have 30,000 or less people who are young at heart have 120,000 or more. And memories like that about I remember my first song that when it comes on, I remember my girlfriend, you know, the one that I was with when I was 12. You know.
Bill Gasiamis 30:08
And those memories are not stored. In the head, I reckon they’re stored in the heart, and they are accessed by the head and, brought to life or back to sort of our memory via the head. But I think they’re stored elsewhere. And that’s why a lot of people will go through these terrible neurological issues, and then still be able to remember a song they did, they danced in 30s, or whenever, as, as well as that.
Bill Gasiamis 30:39
Many years ago, I met a guy who had had a heartbreak, from a relationship that had failed, he was a musician. And one of the things that he couldn’t do was sing the songs that he used to sing. It’s not that he couldn’t actually sing because put another, put another track on the radio, he can sing with it. And that was all fine. And he didn’t have any neurological issues. He actually couldn’t access the songs.
Bill Gasiamis 31:08
To sing them similar. He described it in the same way that we can’t access words after a stroke. Sometimes. He described it in a similar way he goes, he knows the song title, he knows where it’s at. He knows where to go, but he can’t open it, get there, express it, and sing it in tune in in key along along with the music that he used to play on his own guitar. Yeah, right.
Bill Gasiamis 31:35
So for me, I said to him, well, it makes sense to me when you told me before that, that you’ve had a heartbreak, and it’s really emotionally painful. And and every time you go to your heart, you get your break down. And it’s hard for you because you’ve never gone there because you’re a man and you know, you, men don’t cry and all this rubbish.
Bill Gasiamis 32:02
But now, you can’t sing a song because you don’t want to go with a song is because it’s going to be emotional, it’s going to be hard. And I think it’s in your heart. And I left him with that information to do whatever he wanted to. And I feel like there’s a bit of, for me, at least I relate to that.
Bill Gasiamis 32:18
When I say it, like that’s that’s kind of how I experienced the same thing. And I wonder if people listening will relate in a similar way. And if they are, please do let me know in the comments or reach out on Instagram. And let me know. If that does resonate. How do you feel about what I just said?
Michael Andrew Petersen 32:35
Yeah, it it’s, I, I feel like, and I think I, I heard your, I think you just were talking about the neurons in the heart recently with another guest. And I remember, I remember thinking of that, and thinking, you’re right on, it was spot on like it, that it, there’s got to be something to that.
Michael Andrew Petersen 33:06
Because I do feel like, you know, I was so cloudy. And I was so unsure of anything that was happening up here that it must have happened in here, you know, like, and that’s all I could think of when I was listening to you just a couple days ago, I was listening to that, that that podcast, so
Bill Gasiamis 33:27
I hit my head completely switched off, and it and I couldn’t use it for anything. And my heart came on to the point where I was recognizing a new sensation in my chest. And I didn’t know what the hell it was. And it was my heart. It was making this fear. It was creating these weird experiences and feelings.
Bill Gasiamis 33:50
And I had no idea what it was. And I discovered later that it was my heart. And that’s part of the emotional journey that I went on. You know, people describe it as the pseudo Baba effect where stroke survivors get very emotional over nothing, or what seems like it’s over nothing.
Bill Gasiamis 34:09
But for me, what I think it was is like the heart coming online. And you know, it’s kind of dysregulated at that point in time. And it’s kind of doesn’t know how to be online. And it just kind of comes out out of nowhere, because things that are technically not emotional shouldn’t be triggering tears.
Bill Gasiamis 34:31
But they, for some reason do indeed and still do from time to time. So I think it’s like an over-expression of the heart at some stages, you get an over-expression because it’s never had the opportunity to express itself to that level. At least in my body. It didn’t because I wouldn’t allow him
Expressing Emotion In A Different WayMichael Andrew Petersen 34:57
Yeah, it’s, you know it I’ve Uh, you know, I, there’s, there’s a lot of truth to that. And you know, like, there’s, I wish I could say I’m one of those tough guys, that’s, that’s never shed a tear or whatever, but my wife and my two girls would tell you that’s not true.
Michael Andrew Petersen 35:15
I mean, I, I do tend to get kind of emotional. And I don’t know if I’m any more emotional now than I am that I always happen. I don’t think so. Hell, I don’t know, I don’t live with myself. Yeah, I guess I, I will have to ask them. But
Bill Gasiamis 35:34
I express it differently though. Before I was expressing emotion in anger. To perhaps I don’t know, well, maybe it’s the only one I knew how to express I express that in, in, in external displays of anger, you know, yelling, screaming, you know, doing all that kind of stuff.
Bill Gasiamis 35:58
Whereas now I express it in tears in sobbing in quiet, more quiet time in withdrawing rather than engaging in an angry or, you know, seriously emotional state. And I think that’s what’s changed for me. It’s, I express it differently. I was highly emotional, but you wouldn’t know it. I was going about it the wrong way.
Michael Andrew Petersen 36:26
Yeah. Yeah, I think, you know, like, I laugh, and it’s, you know, you, you, you spent so much time early on, in, in recovery with, with some of these PTs and OTs or whatever. And I was like, gosh, now I, I feel like to a certain degree, like, I gotta go back and talk to these people, and let them know that I’m not absolutely crazy, because I was, I was super emotional at the time by I had one.
Michael Andrew Petersen 37:01
One physical therapist in particular, who, you know, I really identified with and I kept seeing, my, my eldest daughter is studying kinesiology here in the United States. And she is going on to, she would like to be a physical therapist, and I kept seeing my daughter in this person.
Michael Andrew Petersen 37:24
And I get better, and I would get emotional, because I was like, This is so perfect for my daughter, she’s going to be so great at this. This is like, the most perfect profession for her to enter. And it would get me really emotional. And they must have thought I was crazy. And then I would, you know, do your kids.
Michael Andrew Petersen 37:50
So I thought I would talk about my girls all the time, to these poor people, and they’re like, good enough, but the kids stories guy, we get it, let’s get let’s get these through these exercises and get you back to your room.
Bill Gasiamis 38:04
Look, I know that you think that they’ll think you’re you’re not but they didn’t. Because they’ve seen it all before. And they know what’s happening. And they know that it’s a, you know, a life, a threat to your life will make you do strange things and say strange things, especially when your head still not completely online.
Bill Gasiamis 38:24
All of the things that you did have been done by somebody before you already, you know, and they do it for a living. So they see it every day. And we’re the ones that feel uncomfortable with it. Until you get to that point and you go, okay, I can be comfortable with every way that I behave, because I’m no different to any other human.
Bill Gasiamis 38:44
And what I wasn’t, and what I was uncomfortable with was the behavior that was not useful, or the behavior that was making somebody else feel worse. That was the part that I really became uncomfortable with later. At the beginning. It was you know, feeling self conscious.
Bill Gasiamis 39:03
And then later on, it was like, Okay, I need to stop being an idiot when it’s not necessary to act a certain way, you know, and it gave me the ability to reflect, do a lot of reflecting, and going, you know, if, if today was my last day, would I want to write be happy with that last interaction with that person, you know?
Bill Gasiamis 39:25
And then it’s like, yeah, let’s undo some of that harm that I had done in the past. Not that I was a total asshole. I was just an an. I was just a an wise person who had very few resources because I never studied the things that I didn’t know I needed to study. You know, how do you know what you don’t know?
Michael Andrew Petersen 39:48
Yeah. Yeah. It’s not to not to take this on a downward spiral. or anything, but it’s it’s, you know, one of the things that that I was thinking about today was that it’s it’s been, you know, almost 11 months, but it’s been, you know, the recovery, for me at least has been, you know, and I know my wife’s gonna cringe and my daughters are gonna cringe when they hear me say this, but it’s been, it’s been really lonely.
Michael Andrew Petersen 40:26
It’s been the loneliest time of my life. And I don’t know if that’s common, or it’s, it’s like, I’m surrounded like, and since I’ve even in rehab, rehab, hospital and day rehab, I’ve been surrounded with other people that have been going through the same damn thing. But it’s not. It’s still, it’s a lonely process.
Bill Gasiamis 40:49
Yes, it’s, it is. And that’s the strange part about is trying to explain it to family, because they’re around you, they’re supporting you, they love you. They’re always with you. And you feel lonely. And it’s not because of them. It’s because of what it does to you, but also how how you relate to the rest of the world, because you now don’t relate to the rest of your family the way that you did before the hemorrhagic stroke, right.
Bill Gasiamis 41:18
And you’re, you’re related to them. All of those things are still there. But then there’s this new version of you inside this new expression. And it’s like, What the hell do I do with it, let alone how do I recover from it or with it? And how do I explain the unexplainable to other people so they can get me. And for me, I’m still on that journey. 200, and nearly 10 episodes of the podcast is, this is an attempt to explain it to my family.
Bill Gasiamis 41:52
This is why one of the reasons why the podcast exists, as well as to feel less alone. So that I can find people that are like me. And it just so happens that there are around the world, and they’re all over the place, but they get me in this one hour that we have, I get them, they get me and I feel better about myself for a week, you know.
Bill Gasiamis 42:17
And it’s for my family, this is for my family, if anyone wanted to get an insight into what it was like to go through what I go through, all they had to do is tune into the podcast, but they don’t. And the reason they don’t is because I haven’t made a point of it. But if they choose to they will.
Bill Gasiamis 42:36
But the reason they don’t is because I don’t want them to be forever living my their life via my filter of stroke. And the only way they’re going to know what strokes like is to have one. And I don’t want them to have a stroke.
How One Word Can Change Your Life – Michael Andrew PetersenMichael Andrew Petersen 42:50
Yeah, yeah, exactly. Yeah, I don’t, I don’t wish it on anyone. You know, like it’s, but at the same time, you know, it and this has taken, you know, it’s taken me a long, long time to get to this. And it’s, I I’m, I’m getting to the point where coming to the realizations, this isn’t something that happened to me. But it’s something that happened for me.
Michael Andrew Petersen 43:28
And, and just the nuance of that one little word, you know, really does change everything. And I think it’s made me recognize that I didn’t really like the person that I that I was a lot of the time, I didn’t like, you know, you know, but this has given me an opportunity to rethink and reimagine who I am and what I can be, which is, is pretty, pretty amazing.
Bill Gasiamis 44:04
Let’s unpack that for a little bit. You’re married, you’ve got a family, you got kids. You got you’re in advertising, you probably deal with people all day, every day. They most of them, like you to some extent. And you didn’t like the person that you had become or were becoming, like, which aspects of yourself Didn’t you like?
Michael Andrew Petersen 44:38
I think that when you’re, you know, when you when you have your own business and you and you, you’re so driven. Then you become so fixated on the one thing that you do, and it becomes almost too important. And then I realized really quickly like hell I did that. I remember getting the the rehab hospital.
Michael Andrew Petersen 45:02
I was thinking, you know, one of my questions, my wife was like, hey, I need to contact these these clients. She’s like, No, you don’t. She’s like, No, you don’t. And I said, I mean, I’ve got, I’ve got meetings. And she’s like, Michael, it’s, it’s been weeks. And I said, like, I’m like, What month is it? She’s like, it’s, it’s October.
Michael Andrew Petersen 45:32
And it’s just, like, all of a sudden, I just, I listened to her, you know, I just listened to her. And I said, You know what it doesn’t. It’s inconsequential. Like, it’s not as important. It probably wasn’t even as important at the time. But I made it important. Which, you know, you have to do as a professional. But I’ve gone through an event in my life, that, that that really, truly did change me, I think, I hope, I hope
Bill Gasiamis 46:08
that sounds like it, you’re reflecting on it things differently. I had a business as well as still have a business other than this, that I do. And it was. And it was my first thing was, I’ve got a, it was Saturday. And we were supposed to be a work Saturday, and it was 15 people relying on me to be there, I was running a project.
Bill Gasiamis 46:29
And my first thing was, Oh, I’ve got a call work and let them know I won’t be there that will complete a capable of getting that John job done on their own without me. But I thought that it was revolving around me and I had to be the person. So that led me to say that approach was what made my business successful.
Bill Gasiamis 46:54
And it made me able to earn money and do all the things that I thought I needed. But it did keep me away from my, the rest of my life for the majority of the week, and the weekends, a lot of the times, which meant that I had very little downtime. I had very little me time, I had very little stuff that I enjoyed doing that was part of my passion projects, for example.
Bill Gasiamis 47:20
And as a result of that I was getting I was kind of resenting a lot of the things that I had to do for other people, because I had a priority, my priority was my clients, and I never wanted to say no to them. Whereas now, my clients will call me and I won’t speak to them for the day, I won’t respond to their phone call right now, or at five o’clock in the evening, or at seven o’clock in the morning.
Bill Gasiamis 47:46
I’ll respond to them when I’m good and ready. And if they have to wait 24 hours, then that’s fine. I’m not going to kill myself to do that. And I didn’t like that aspect of myself then. And that’s not how I am now. So I can relate to what you’re saying is that business goes on life goes on.
Bill Gasiamis 48:03
But the way that I set the expectation for my clients, which is the part that’s over and above delivering the right outcome to get paid, right. Everything else can be adjusted, and you can tweak and you can retrain them that when you when they call they’re not going to get the phone answer any time of the day.
Why Michael Hasn’t Been Able To Get Back To WorkMichael Andrew Petersen 48:30
Yeah. So, you’ve been, you know, I kind of feel like I’m relatively new to this. So, you know, what don’t I know, Bill? Like, what going on, you know, like, coming up on a year, you know? And I haven’t been able to get back to, to the office yet. There’s a lot of things that I haven’t been able to get back to, but, you know, what’s what’s year two like?
Bill Gasiamis 49:06
Tell me why you haven’t been able to get back to the office yet. And I’ll give you a bit of an insight.
Michael Andrew Petersen 49:15
You know, like, so I haven’t been cleared, I’m still going through a lot of my, you know, kind of speech and occupational therapy, a lot of the cognitive therapies. So, but I think, you know, towards the end of September, you know, I’ll be I’ll get cleared to go back to work.
Michael Andrew Petersen 49:38
You know, and, and I do remember vividly, you know, like one of the, one of the first meetings that I had that I really kind of took everything in, you know, the doctor, I was at the rehab hospital and I was, you know, I was starting to figure out what the hell was going on.
Michael Andrew Petersen 49:56
And she said, Hey, she’s like, I’m going to I want you to understand that this isn’t, this isn’t weeks, it’s not months, she’s like, you’re not, you’re not even gonna feel like yourself until a year. And she’s like, in a very well could be two years, she’s like, so the worst thing that you can do right now is to push too hard. And to get back into things too quickly.
Michael Andrew Petersen 50:23
She said, because you’ve, you’ve, you’ve always lived your life at a very high level, and your business is very demanding. And she’s like, and you will let yourself down. And that’s the one thing you won’t be able to live with is the disappointment that you’ll create and yourself by going back to early, and getting put in a situation that you cannot deal with, she’s like, and you will, you’ll never forgive yourself, and it’ll slow you down.
Michael Andrew Petersen 50:55
And she’s like, I just don’t want to see that. Because I mean, I wanted, I wanted to leave the rehab hospital after a month and, and my office was four miles from us, but I wonder, like, I’ll just go in right now, you know, pick up where I left off, and I was convinced otherwise.
Michael Andrew Petersen 51:13
And then I think, I think through the recovery process, you realize, like, hey, this, all that. All that damage up there, all those things that kind of used to work and fire together, that got unstuck, that takes a while to come back together. You know, and I, I feel
Bill Gasiamis 51:37
Good, I was gonna say one of the ways that it comes back better is when you do it. So I know why they told you not to go back after a month, and I was told similar things. And I agree, I agree. At the same time depends on the mindset and the kind of guy that you are, if how you take losses and hits, if you if they really make you down and depressed, and all that kind of stuff, or if they inspire you to go further.
Bill Gasiamis 52:03
So think about the first time you ran a marathon or the first time, you know, you’re terrible at it, or you weren’t anywhere near as good as you were the second set third, fourth or fifth time, but what you did is you created a, a baseline for where to begin from.
Bill Gasiamis 52:21
And you remember how hard it was to recover from that first marathon, how much pain you were in how long the pain lasted, and the rest of it was stroke similar, you’ll go, you’ll go, you’ll go, you will hit a brick wall, and then there’s a price to pay after that. Just like our marathon and recovery, it’s gonna take X amount of time for you to get back to feeling energized again or in or Well, again, or, or better than you did after that big exertion.
Bill Gasiamis 52:49
So part of the thing that you need to do is you need to now start to exert yourself, see where your limit is. And see if you can go beyond that. Just a little. And then and then see how long it takes to recover. Do it as a as a project of learning where you’re at, rather than I’m going to set a deadline. And Dammit, I’m going to get to that deadline.
Bill Gasiamis 53:12
And then if you don’t get to the deadline, feel shit about yourself. There’s no need for that. And deadlines are terrible in stroke recovery, forget about deadlines, just set goals, and try and get to the goal rather than to the goal by a time. Yeah, if you don’t put a time on it, then that’s far better. I think you’ll feel better about it.
Bill Gasiamis 53:35
And then also, you’ll be able to show to people that you’re learning about yourself and that I’m going to exert myself, you guys have to have my back, trust me. And then when I crumble in a heap because I’m too exhausted, I will recover. And I’m going to show you that I’ll do the right thing after that to recover.
Bill Gasiamis 53:56
And then you’ll understand that I’m actually taking this seriously. And I’m not trying to go back to my old self and the guy who overdid everything. As far as work was concerned, I’m going to go back and test my my boundaries. So I can rediscover how to be a new version of myself like how can I evolve and solve these problems rather than be be afraid of them and be overwhelmed by them?
Bill Gasiamis 54:30
It took me six years because my strokes happened over and brain surgery happened over three years almost. So I had a long time of off again on again off again on again, and not know and uncertainty. And then when the surgery happened, that created more certainty that there wasn’t going to be another stroke.
Bill Gasiamis 54:55
But it created a lot of recovery that I never thought I never knew. was coming. And a lot of that was cognitive recovery, recovering, being able to look at a screen for a long period of time and do all of that side of my work physically, I could do tons. But cognitively, I couldn’t do a lot.
Bill Gasiamis 55:13
And there was, the only way I could do it was to pay the price of going too far. And then that was retraining the muscle. And it was also teaching me where my limit was, so that if I did want to do some work, and be fully active at work, I knew that I could go until 1pm.
Bill Gasiamis 55:34
And then, no matter what, I’m going home, and there’s no one more email after 1pm No, that was it. I’m out of here, guys, you know, next email, I’ll handle tomorrow. So I think maybe you can consider whether you’re whether you’re at that stage of your recovery now the years approaching. And, and kind, you know, you know, kindly push yourself a little beyond what your comfort zone is now.
Michael Andrew Petersen 56:12
Yeah, yeah, I feel like I’m doing it in a couple of different ways, you know, I haven’t, I’ve been fortunate enough, I’ve got, you know, I think you do your recovery process, you also really, your true friends who really stand out.
Michael Andrew Petersen 56:32
And the people that really care about you, you know, and it’s, it’s cements you, and there’s a couple people in my life that that, you know, that knew that I needed, you know, I needed to get back into, you know, you know, I just by my recovery, you know, you can only you can only tell your OTs and PTs so much, you know, and then they need, they need to know that you’re, you’re doing something that you used to do.
Michael Andrew Petersen 57:06
And this is what you’re running into, that you can’t get past. So, I’ve been able to work with a couple friends on some little, little pieces here and there, that have really, really helped me and challenged me, you know, and then I was cleared, they put this fancy pump in the back of my head, so I have a shunt or whatever.
Michael Andrew Petersen 57:36
So I couldn’t, I couldn’t do a lot of impact exercise for awhile, and I’ve been cleared to get back running. And so as of the last two weeks, that’s been the most humbling experience I’ve come across yet. I mean, it’s, it’s like, you know, it’s, it’s, it’s tough. It’s tough. I mean, I’m knowing I’m used to running.
Bill Gasiamis 58:03
Know, you’re running mine, and you’re doing it from a place of not being able to run once upon a time at all. Yeah, no.
Michael Andrew Petersen 58:13
Big deal. It is. So, like, it’s, you know, I’m, I’m super fortunate, you know, like, I feel like, you know, I feel like, although I’m still got a lot of, like, lack of sensation, on my right side, especially on my lower it doesn’t, I’ve never really, nothing’s ever happened with my hand, which is like that goodness for me, like, you know, like, I, I use, I have a, I work with my hands a lot.
Michael Andrew Petersen 58:51
So I’ve been super fortunate, but my lower extremities, like it’s just been, you know, that’s not come back the way I thought it would, and then that can be tricky with running. Because then, you know, you’re kind of crossing over and cross over in the wrong kind of way and you’re gonna go down.
Michael Andrew Petersen 59:14
So, it’s, you know, it’s humbling, but, you know, all these things are great to work at and work on and focus. It’s, it’s given me incredible challenge, you know, at something, you know, that I didn’t expect, but, you know, like, the process is something that I’ve been, I have to say, I have enjoyed, you know, I’m a process oriented person, I believe in processes, you know, and this is kind of the ultimate in that, you know, to kind of see yourself go through, you know, all these different therapies and knowing Interesting in it, that you’re going to come out on the other end of better person,
Bill Gasiamis 1:00:04
you’ve got a lot of problem solving skills with your business, right, you’re, you can apply that to your recovery from this thing that you’ve gone through that you’ve experienced, you’ve also got a lot of understanding about how you tackle the business, for example, you know, sometimes a client says to you, we need this from you, and you’ve never done that before. And you agree, and you don’t know how you’re going to deliver.
Bill Gasiamis 1:00:30
And you don’t know what the problems are, you can never possibly imagine them all. And then you start down the process and a new trouble comes up or a new problem comes up. And it’s like, we’ve never dealt with this before, let’s scramble and find a solution and apply it and see if we get a result.
Bill Gasiamis 1:00:46
And this is exactly what you’re experiencing. Now. You’re going through this phase of, I know, it’s a new project that I’ve got. And I know I’m going to have some troubles, but I don’t know what they’re going to be. But when they come to them, If I focus more on the solution than the problem, I’ll get more solutions.
Bill Gasiamis 1:01:06
And that’s exactly what stroke recovery is. And part of that means that you’ve got to expand your, your you’ve got to become more intelligent, you’ve got to come more emotionally intelligent, you’ve got to become more problem solving, kind of brain intelligent not. I’m not saying your IQ has to go up like but you’ve got to apply your brain in a different way. Because it works differently now.
Bill Gasiamis 1:01:35
And you got to you got to grow, like intelligence from the other part of your body, which is your gut, listen to your gut for advice on inst on your what your instincts telling you about when to take action, how to overcome your fears, because that’s where they live, you know.
Bill Gasiamis 1:01:54
And you got to become more aware of how you’re getting in your own way. And you got to be super critical on those things. And then as a result, if you treat it like a if you treat your recovery, like a business deal, that this is the this is what you get out of it. If you do. If you overcome all these problems, this is the reward that you get for that deal.
Bill Gasiamis 1:02:22
Well, then, you can overcome your deficits, even though you’re going to be living with numbness in your leg. You can live with numbness in your leg and still experience a full life and you can live with deficits that are more debilitating than that and still have a full life.
Bill Gasiamis 1:02:40
You just have to get good at solving problems that you’ve never solved before. And I know some people do a lot tougher than you are. And that they might not see it that way. But there’s no other way to see it. Seeing it that way might be hard, but not seeing it that way you still had.
Bill Gasiamis 1:02:58
So choose your heart, which hard do you prefer? That’s kind of you know that. So I think you’re in a good position to really have a great next 12 months, even though there’s going to be ups and downs. There’s going to be frustration, celebration, there’ll be fears, there’ll be all sorts of things.
Bill Gasiamis 1:03:19
I think it’s still could be a great 12 months, and I don’t think you’d quite know, yet. You haven’t had enough time in this space to know yet. How good this can be in 10 years from now. It is for me, it’s 10 years for me since this all started. And this has never been this good. And I have never had this many issues in my life like physical issues, cognitive issues. I’ve never had this much drama, and it’s never been better. So I didn’t get it. Yeah. But that’s the truth.
Michael Andrew Petersen 1:03:59
Hey, that’s, that’s that sounds good to me. I hope I’m I hope I’m in that position. You know, 10 years on. So, yeah, but
Bill Gasiamis 1:04:12
no reason why. Why can’t be I think you have to have bravery as well to face your demons, bravery to overcome your emotional trauma from this situation, or the past that you’ve never dealt with, you know, bravery to tackle your fears about what the future might hold or what it might bring. Yeah.
Bill Gasiamis 1:04:35
And if you do that, you’ll get rewarded for that because you’ll grow as a human being you’ll over you’ll, and you’ll feel yourself becoming a giant, you know, amongst men and for the best reason possible, you know, which is that you just tackled your fears and you did not give a shit about the the you know what it was going to leave Behind the trail of disaster that it was going to leave behind, from a, from a personal growth perspective, and what you have to shed and let go of, you know, because identity is a massive thing.
Bill Gasiamis 1:05:15
And if your identity, Michael has always been, I’m an advertising guy, and that’s what I do. And that’s who I hang out with. And they’re the people that I know.
Bill Gasiamis 1:05:25
And that’s all we ever do is talk shop, and all that kind of stuff. And now that’s taken away from you, you got to rebuild your identity, and you’ve got to start broadening your, what identity, what your identity is, it has to include, I am a father who’s present, I am a husband, who’s grateful.
Bill Gasiamis 1:05:44
I am a person who jumps on a podcast and helps other people. By sharing my story, you know, you’ve got to grow what your identity is. And then that way, you feel better about how you had to write how you got to that point, like, why what was the event that led to that? It’s about post-traumatic growth, you know?
The Thing That Most People Don’t Tackle In RecoveryMichael Andrew Petersen 1:06:13
Yeah, ya know, there’s a lot of truth in that. And that’s one of the, you know, I’m, I can, I can almost hear my wife nodding. And she hasn’t even heard your words yet. But she’s, she’s gonna identify. You know, she’s, she’s been the one that’s been really pushing me to, you know, to deal with the trauma.
Michael Andrew Petersen 1:06:36
And she said, it’s the one thing she said, it’s the one thing that, that they don’t really tackle in your recovery process. And she’s like, it’s, it’s, it’s unfortunate, she said, but I know, like, you’ve taken on everything else, she’s like, you know, and you’ve, you’ve done good with all the physical and you’re getting better with the cognitive, she said, but you’re not dealing with the emotional trauma, you know, she’s you, you went through a lot, and you, you’re not touching that.
Michael Andrew Petersen 1:07:09
And she’s right. But that’s, you know, that’s, you know, another hill to climb.
Bill Gasiamis 1:07:17
It is. And it’s inevitable for most people that does, the heel becomes visible at some point. And it’s the reason it’s inevitable is because initial recovery is physical, and the doctors throw that at you, and they want to make sure that you’re up. And there’s a lot of reasons why, why the physical recovery is important, of course, because if they get you on your feet, you know, you start to become independent, again, and all those things matter.
Bill Gasiamis 1:07:44
But the physical recovery, and I’m writing a chapter about this, right now, Chapter seven of my book, is because being physical, you know, releases endorphins, it helps with neurotrophins, you know, things that support brain health and neuronal function. It supports serotonin, it supports dopamine, you know, and there are all those chemicals that are necessary for you to get high levels of in your brain.
Bill Gasiamis 1:08:26
And exercise is one of those things that does it more than anything, and it doesn’t have to be physical, it can just be very mild, relaxing, calm exercise, you know. So I get it. And then from there, what exercise does it supports, decreasing anxiety, it supports decreasing depressive symptoms, it increases your mood, it helps to improve your sleep. And they can see that they can see that. So they, they can see your physical deficit.
Bill Gasiamis 1:09:05
So they push that, but they can’t see your emotional deficits. Yeah. And they can’t impact that, that you’ve got to lead the charge to the emotional recovery. Whether you go through coaching, whether you go through counseling, or a combination of both, whether you connect with a stroke survivor who guides you through that. Your journey.
Bill Gasiamis 1:09:30
That’s the path that you have to lead, and that’s what your wife wants for you. She wants you to go, I’m gonna lead this recovery because she knows she can’t do it. She can prod but at some point, you’re gonna say Stop nagging me.
Michael Andrew Petersen 1:09:46
Yeah, no, I did. She’s and she’s always right, Bill, like she’s, you know, the, and she was right about this. And it’s, you know, and it’s it’s important And, you know, but that’s, you know, like, you know, I want to be I want to be better for her, I want to be better for my girls. You know, like, there’s, there’s a lot left. And you know, it’s a must the most Luckily, I was given another chance.
Bill Gasiamis 1:10:23
Yeah, man, a lot of people don’t get it and what’s what’s good is that
Bill Gasiamis 1:10:30
you you know what dedication to a task for many, many, many, many years creates a create success. If you as well as your other tasks that you’re dedicated to
Bill Gasiamis 1:10:48
decide to dedicate some time to the task of you evolve, evolving and emerging from this in a positive way, you’ll succeed. And you’ll look back and you’ll go, man, I’ve done some amazing things in my life. And one of those includes my evolution from this experience that was seriously nearly took my life. Yeah. Yeah, that’s my hope.
Bill Gasiamis 1:11:21
You will, you’ll succeed, man 100%, I believe in you. I believe in you. And I believe in everybody who, who’s listening, who is going through what we’re going through, because if I’m able to do it, if I’m able to look back on my 10, on my last 10 years, and they were my hardest 10 years, and respond with I think that stroke was the best thing that ever happened to me. If I can do that bill from Preston, Melbourne, Victoria, Australia.
Michael’s Experience And How It Changed HimMichael Andrew Petersen 1:11:56
Anyone can? Yeah. Well, it’s, you know, it’s, it’s not anything that I would have, I would have thought that I would go through. And, but I have a lot of respect. And I don’t know, if I would, you know, at this at this point, I don’t know if I would change it.
Michael Andrew Petersen 1:12:21
You know, it’s, it’s brought me to a place where I’m very thoughtful, and I’m thoughtful in a much different way. And I reconcile my feelings so much differently because of the experience that I’ve had. And, you know, I, I wouldn’t want to change it at this point. That’s perfect. It’s been tough.
Bill Gasiamis 1:12:47
Yeah, that’s profound. And, and I think a lot of people relate to that, and would agree with you that they wouldn’t want to change it. And I wouldn’t either. I would, I would love to say that I would rather have learned the lesson. Easier than what I did. But it’s just it wasn’t meant to be easier, because I didn’t learn it until I had to learn it.
Michael Andrew Petersen 1:13:13
Yeah. Yeah. So, you know, a lot of, I don’t know, I don’t know why I, I listened to a lot of podcasts bill. So like, there’s a number of people that I, that I listened to, and, you know, the one thing that told me never to do was read your own medical records. And I did that tonight. So I will, I’ll take that off the list.
Michael Andrew Petersen 1:13:37
And then, you know, the one thing that that I, I just, I don’t like to, you know, I just don’t like to think about I should, you should never look at the statistics for what you went through. And I did that as well. And that’s, that’s pretty humbling as well. So, you know, it’s, I should I shouldn’t have done that.
Michael Andrew Petersen 1:14:07
That’s but it, it makes you more grateful, for sure. To know that you’ve gone through something you know, and I used to when I was with all the follow ups and you’re no stranger, this but you, you go through this experience, and then you finally get home and then you spend the first month doing follow up visits all these doctors.
Michael Andrew Petersen 1:14:36
And the stroke had really done something to buy, you know, like, through the life saving techniques or whatever, all that fluid in my head and it screwed up my retinal nerve and that blew out my hearing. So I had to I had to get these fancy hearing aids now, so that I can hear but I went to seek this hearing specialist.
Michael Andrew Petersen 1:15:02
Because I was convinced, though I was convinced, like, I think it’s just like, I just need a real deep cleaning. And it just once they release all that gunk into my ear, then I’ll be able to hear again. And I was I was my wife was like, I think it’s a little bit more than that. But like, so I go to this hearings, this audiologist follow up.
Michael Andrew Petersen 1:15:23
And I catch the guy and he’s just, like, engrossed in something. And I was like, Alright, whatever, you know, he’s, he’s a professional, I’m gonna let him do his thing. And he looked up a couple times and looked at me. And he’s like, are you Mike Peterson? And I was like, yeah. He’s like, how did you get here?
Michael Andrew Petersen 1:15:48
And I said, I, I drove, he’s like, You drove a car to my office? And then he’s like, he’s like, are you in it? And you’re not in a wheelchair. Your wife’s not with? I said, No, I just came up in the escalator, whatever. He’s like, he’s like, I don’t want to embarrass you. He’s like, but I just read your chart. He’s like, You, your body went through four different things.
Michael Andrew Petersen 1:16:17
So he’s like, and three of them, people just simply don’t walk away from that a second. And the fourth is like, he’s like, I don’t, he’s like, I don’t even he’s like, I expected you to be wheeled in here. He’s like, I never expected that you would have driven yourself. And those, those are the things that I would get.
Michael Andrew Petersen 1:16:39
Like, after that, like, I left that appointment, and I got my car. And I was like, I was shot. I was like, I called my wife and I was like, a mess. And I just, I said, those things. Those are the hardest. Those are the hardest visits for me. Because it doesn’t, it doesn’t really hit home until you hear someone tell you from a medical standpoint, that that, that they don’t, they don’t know why I’m there. And so there’s got to be a reason, right? So I gotta find that reason now.
Bill Gasiamis 1:17:14
Beautiful. And on that note, that’s a beautiful way to end this podcast. And just before we end, let me just say, not only will you find that, you’re gonna make a massive difference on the planet to other people on your journey to discovering that, and then hopefully sharing that and letting people know what you discovered. I think that’s kind of what’s meant to come next. how that looks. I don’t know. And it doesn’t matter. But yeah, enjoy the enjoy the ride, man.
Michael Andrew Petersen 1:17:44
All right, thank you very much. I appreciate it.
Bill Gasiamis 1:17:48
Thanks for joining us on today’s episode to learn more about my guests including links to their social media and other pages. And to download a full transcript of the entire interview. Please go to recoveryafterstroke.com/episodes. If you would like to purchase the course five foods to avoid after stroke, go to recovery after stroke.com/courses and get on board now.
Bill Gasiamis 1:18:12
If you would like to support this podcast, the best way to do that is to leave a five star review and a few words about what the show means to you on iTunes and Spotify. If you are watching on YouTube, please comment below the video. Like this episode and to get notifications of future episodes, subscribe to the show on the platform of your choice. If you are a stroke survivor with a story to share about your experience, come and join me on the show.
Bill Gasiamis 1:18:39
The interviews are not scripted, you do not have to plan for them. All you need to do to qualify is to be a stroke survivor, or care for somebody who is a stroke survivor or you are one of the fabulous people that help other stroke survivors. Go to recovery after stroke.com forward slash contact, fill out the form and as soon as I receive I receive it.
Bill Gasiamis 1:19:01
I will respond with more details on how you can choose a time that works for you and me to meet over zoom. Thank you again for being here. I really appreciate it and see you on the next episode.
Intro 1:19:13
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. The opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed all content on this website at any length blog, podcast or video material control.
Intro 1:19:35
This website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis, the content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.
Intro 1:19:53
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Intro 1:20:07
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Intro 1:20:34
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Intro 1:20:45
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The post Heart Memory And Stroke – Michael A Petersen appeared first on Recovery After Stroke.
In this episode of the Recovery After Stroke Podcast, you’ll hear how Loyd navigated the intersection of addiction, diabetes and stroke and how he found the strength to overcome adversity. This is a must-watch for anyone facing similar struggles or looking for inspiration on their own journey towards recovery.
Highlights:
00:54 Introduction
04:09 The Off And On Stroke Symptoms
12:20 The Five Foods To Avoid After A Stroke Course
16:33 The ER Doctor The I Disliked The Most
24:09 What It’s Like Being On The Other Side?
26:40 Laughter Is The Best Medicine
33:49 Addiction Diabetes And Stroke
45:14 Gratitude And Forgiveness
53:19 The Hyperbaric Chamber And How It Works
1:04:04 Finding New Perspective: Life After a Stroke
1:11:09 Finding Your Tribe
Transcription:
Loyd James Fox III 0:00
I’ve got this doctor who’s doing the stroke scale on me. And he’s asking me if I can see his fingers wiggling. And I’m trying to tell him. No. But I have history of diabetic neuropathy with laser surgery on my retinas. That has ruined my peripheral vision. So I couldn’t tell you if I was having a visual stroke. Because I can’t see until about here. He wasn’t listening to me. I’m probably sure the bill is gonna be huge for a doctor that did nothing for me. Just weightless fingers.
Intro 0:41
This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.
Introduction – Loyd James Fox III
Bill Gasiamis 0:54
Hello, and welcome once again to the recovery after stroke podcast. This is episode 239. And my guest today is nurse, Jim Fox. In our discussion we discuss Jim’s journey of living with type one diabetes, overcoming addiction and healing after an ischemic stroke. Jim Fox, welcome to the podcast.
Loyd James Fox III 1:15
Hello, how are you?
Bill Gasiamis 1:17
I’m well thank you, Jim, tell me a little bit about what happened to you.
Loyd James Fox III 1:24
November 13th, of 2022. I woke up, started a fire by woodstove. And then I went back to bed. And then I woke up, tried to use my cell phone. And I wasn’t able to use fine motor control to type in a message to my wife good morning, because my wife’s a registered nurse also, we’re both nurses. So she works at an ICU I used to work in ER. So we’ve got a little bit of history medicine.
Bill Gasiamis 2:09
So you couldn’t type the good morning message?
Loyd James Fox III 2:14
I could not know. At the time, I realized that I was having problems with speaking too I was going to talk to my dog of all things. And I was garbled. So I knew at that time that I was having a stroke. I absolutely knew it. So I got up, try to call 911. And the thing about it was is that I didn’t even attempt to use my left hand it was my right hand that I had the stroke in so on my right side.
Bill Gasiamis 3:03
It didn’t occur to you to just swap over the hands for a moment.
Loyd James Fox III 3:07
No. So the kicker is that I was having a stroke throughout the day before. So it was coming and going, so I went to lunch from work got to my truck. And when I got out to the street, I pushed on the gas pedal. And you wouldn’t think that there’s fine motor control with your gas pedal.
Loyd James Fox III 3:40
But I pushed my foot down and the truck jumped out in the street. And when I went to turn the wheel, it slipped out of my hand. So I had to grab it with my left hand. And then I was able to grab it with both hands and then figure out like what the heck is wrong with my truck?
Bill Gasiamis 4:08
It was the truck.
The Off And On Stroke Symptoms of Loyd James Fox IIILoyd James Fox III 4:09
It was the truck. And I’ve heard you talk to other people on your podcasts about how they drove and it was always something else. Look, I’ve been trained in emergency medicine certified emergency room nurse trained in the NIH Stroke Scale, Cincinnati Stroke Scale educated. I drove home, once I got home, the symptoms resolved.
Loyd James Fox III 4:43
So it was coming and going. Had lunch, drove back to work. And then it was my pen. I didn’t put two and two together. My didn’t wasn’t writing, I wasn’t writing with my right hand. So often on off and on, I currently work as a dialysis nurse. And I was getting patients off. And when I got out of my chair, I stumbled.
Loyd James Fox III 5:25
And it just went from there. I had a little slurred speech, but I’m a type one diabetic also. So I have symptoms like that when my blood sugar’s low. So I had something to eat. The speech went away, I went home, and I was really tired. Mind you, I get up at 3am to go to work at 4am and then work a 12 hour shift and come home.
Loyd James Fox III 6:00
Came home went sat the backyard. I mean, it was like 55 degrees out and I just sat there just thinking, what is wrong? I had this feeling of doom. I have this feeling of I’ve never told my wife this. So she probably gonna watch this and listen and go Oh, shit. So I went to bed, and I slept all night. And I got up the next morning, my wife had gotten to work. She got up at 5:45 to be at work at seven o’clock. And she was at work. I couldn’t call 911 so she called 911.
Bill Gasiamis 6:50
Hang on a sec. How did that happen, though? Because you couldn’t type the message to her. You couldn’t speak to the dog, how did she actually understand what was happening?
Loyd James Fox III 7:04
So in the middle of that, I know I’m kind of piecemeal, my brain is still just, this is so new.
Bill Gasiamis 7:15
So I’ll guide you.
Loyd James Fox III 7:21
In the middle of it, I was able to type a message to her. By that time, I switched to my left hand. And I texted her stroke. And my son who’s 16 comes out of the room. Just before all that. And he said good morning and I’m kind of grumpy in the morning anyways.
Loyd James Fox III 7:59
And I grumbled at him. I said good morning, but it was a grumble because I was slurred speech. So went into the kitchen, got something to eat, went back to his bedroom. And then he came out with his phone and said Mom wants you to smile. And at that point, I smiled and was able to speak kind of smiled, stuck my tongue out, put my arms out. You put your arms out one way and then you hold them up and you’ve been through the deal.
Bill Gasiamis 8:39
The stroke test.
Loyd James Fox III 8:41
So she said I called 911. So, the ambulance gets here, the fire truck gets here. I’m not sure if they do that in Australia.
Bill Gasiamis 8:58
They don’t but we’re very familiar with the fact that you guys have your fire trucks loaded with paramedics I believe.
Loyd James Fox III 9:07
Some places have paramedics. I’m not sure about city of Shasta Lake, I’m not even sure if it was the city of Redding or the city of Shasta Lake that developed I live right on a line of cities on I could throw a rock at the city of Redding and I have Shasta Lake on the other side where I live.
Loyd James Fox III 9:29
So it could have been one or the other. So we have them i i squeezed their hands. I did hold my hands out and then the ambulance drove up just after the firetruck got there. I walk out to them was having weakness in my left leg. But I was able to control it kind of you know because I can’t believe I did it. I just, I walked out there, I could have fallen and hit my head and ended up with the bleed. But I’m so stupid.
Bill Gasiamis 10:11
You’re normal, it’s what we all did. There’s so many stroke survivors have done something like that. But I get it, I get that comment that you made about yourself, you know, you’re so stupid, but you’re having a stroke, like, it’s okay. You know, your brain is not really working the way that it needs to be.
Bill Gasiamis 10:32
But there is another part of you. That’s work. And that’s the part that’s getting you moving to go towards help, right? So you are being proactive towards your support and your recovery because you’re moving towards help you’ve done all the right things, even though they’ve been in a haphazard way. Or they haven’t been efficient or whatever they haven’t been.
Bill Gasiamis 10:56
They’re still all the right things, you know, stroke, you typed you became involved in that part of the process, which was you know, to test whether you’re having a stroke or not the FAST signs that everyone took you through and then you walked towards the ambulance if you had fallen, maybe you would have tripped maybe you wouldn’t have hit your head.
Bill Gasiamis 11:23
If you had blacked out and fallen. You might have hit your head and then that would have been really dramatic. But you didn’t so don’t worry about it. You got there. And now you’re about to enter the ambulance. Right? Is that what’s happening or are you waiting for the ambulance to arrive because the fire guys are there?
Loyd James Fox III 11:42
I mean, they it was like the fire truck stop parked, they got out, they tested me. For what little they know. And then the ambulance pulled in and the EMT got out, opened the door the paramedic pulled the gurney out and set me down on it got me in the truck. My cute little neighbors come out. Like they’re crying. Oh my god. They’re so cute. Carl and Janet. I’ve been neighbors with them for 23 years.
The Five Foods To Avoid After A StrokeBill Gasiamis 12:20
Hi, everyone. Just a quick break and we’ll be right back to the interview. As a stroke survivor, I understand the difficulties of finding the right information about post-stroke nutrition. So I developed a course The Five Foods To Avoid After A Stroke. While most people are talking about what to eat after stroke to support brain health and recovery. Very few are talking about what you should avoid eating after stroke.
Bill Gasiamis 12:43
If you want to support your brain to heal and you are curious about the five foods that may make matters worse, when you consume them, then this course may be for you. In the fun five series of interviews, you’ll hear about what foods not to eat after stroke. But most importantly, why the interviews are done with a qualified nutritionist Stacy Turner and performance coach Matthias Turner.
Bill Gasiamis 13:07
In the more than five hours of interviews we discussed the five common foods that cause inflammation in the body and brain and how they could interfere with healing and how that could make fatigue worse. For just $49. This five part series of more than eight hours of interviews will with full PDF transcripts. mp3 and videos will give you everything you need to know about the foods to avoid and why the modules include eight reasons to quit sugar after stroke.
Bill Gasiamis 13:37
Seven reasons to quit caffeine after stroke. Eight reasons to quit gluten after stroke, Six reasons to quit dairy after stroke, and six reasons to quit alcohol after stroke. So visit recoveryafterstroke.com/courses. For this and other specifically designed courses that are made by a stroke survivor for stroke survivors. Once again, you’ll get more than eight hours of content.
Bill Gasiamis 14:03
All audio is downloadable in mp3 format so you can listen on the go. full transcripts of all the content to take notes on are available for download or so that you can read instead of listen presented by a stroke survivor for stroke survivors. also presented by a trained nutritionist and performance coach. You’ll get 24-hour access lifetime access to the courses purchased and you’ll be able to interact with me in the comments section. Go to recoveryafterstroke.com and check them out now.
Loyd James Fox III 14:39
So they were crying and said you’re gonna be okay. I’ve had a stroke before Carl said you can get through this. So, we get to the ambulance, they put an IV in me they they put the EKG on me, they don’t put oxygen on, they stopped doing that. But they did all the other stuff. They didn’t give me aspirin because.
Loyd James Fox III 15:13
They couldn’t tell that I was having a bleed or if I was having a clot. Yep. So ischemic stroke versus clot, so got to the emergency room. And my wife’s there. My daughter’s there. I have no idea how my daughter got there. But she was there. And then the intensivist was there. Because my wife is friends with the intensivist.
Loyd James Fox III 15:48
What’s an intensivist?
Loyd James Fox III 15:53
The only work she does, is an intensive care, Doctor. So, I’ve got, I’ve got an ICU nurse, I’ve got an intensivist there. And please forgive me. But I’m gonna say, I get the doctor that I disliked the most out of all the doctors I’ve ever worked in, in the emergency room that I worked in that I helped run. And here this guy is.
Bill Gasiamis 16:28
And now and now that’s on your mind when all this other stuff is happening.
The ER Doctor That Loyd James Fox III Disliked The MostLoyd James Fox III 16:33
All this other stuff is happening. And now I’ve got this doctor who’s doing the stroke scale on me. And he’s asking me if I can see his fingers wiggling. And I’m trying to tell him. No, but I have history of diabetic neuropathy with laser surgery on my retinas. That has ruined my peripheral vision. So I couldn’t tell you if I was having a visual stroke. Because I can’t see until about here.
Loyd James Fox III 17:16
He wasn’t listening to me, I’m probably sure the bill’s gonna be huge for a doctor that did nothing for me. Just wiggled his fingers. But I got to the CT scanner. The neuro intensive care doctor that retrieves clots has been called in the CT scanner. I mean, I got the best care on the planet waiting for me I’ve got the A team.
Loyd James Fox III 17:53
They do the scan, they they kiss me die. They do this scan, and then they do another scan with an IV dye. And my wife comes back into tell me that it’s not a bleed. But the doctor wants to look at the scans as they go through. So I have a we have a carotid artery that comes off our neck.
Loyd James Fox III 18:25
The vain there’s two lines, the M1 is the first vessel that comes off the carotid on my left side is 90% occluded. So they decide that since I woke up with the stroke, I can’t give them a time exactly that we’re not going to do the TPA.
Bill Gasiamis 18:58
Too many hours have passed.
Loyd James Fox III 19:00
So many hours have passed. They couldn’t tell. But the problem being was that the risk outweighed the benefits for the little symptoms that I had. Give the TPA, blow blood vessel, end up vegetable. Will treat you medically, you’re talking you’re walking I was able to transfer from the CT scanner table to the ER gurney so I’ve gone from the paramedics Gurney to the ER gurney, back to the emergency room. And still it’s just so much it’s like oh my God, this is really happening. So much is going on. So many things going through my brain.
Bill Gasiamis 20:05
Yeah.
Loyd James Fox III 20:07
So at this point, my speech is very slurred. I can agree with them I can. People are telling you that my speech isn’t as bad as it could be. So we get transferred to the ICU. And we’re going to do an MRI scan the next day. So I’m being admitted for observation. I’m going to start on Plavix, they gave me aspirin. I’m not sure if they gave me Lovenox or not. So much going on.
Loyd James Fox III 20:55
So we did that, we’re doing all all of the hourly stroke stuff. But my wife has to go home, she’s got to get some sleep. She’s been up all day. And now it’s 11 o’clock at night, the days just flown by. And I give her a kiss and she goes home. My kids are all gone. It’s just me. And in this ICU room, the monitors is beeping, my blood pressure’s 190 over 106. So it’s called permissive hypertension.
Bill Gasiamis 21:44
What does it mean?
Loyd James Fox III 21:48
That means that we don’t want to change one’s blood pressure too fast, because your blood pressure’s high for a reason. Our bodies do stuff. Not because it wants to because it’s trying to get as much blood to my brain as possible. Increase the pressure, get the blood in there. So at this point, I’m slurring still. And like shit, so I take my phone out. I got earbuds in and I start playing music.
Loyd James Fox III 22:34
I can’t even remember what music. Maybe it was pink that I was listening to. And I’m a big fan of Pink. She’s way cool. I’m 54 years old. And I’m listening to Pink. Right? And about halfway through the first song. This is weird. I start singing. I can sing the words to the music I know. But I’m having trouble with words. Forming to tell people how I’m feeling or how I’m doing.
Bill Gasiamis 23:18
Wow. But you can sing the song and you can’t speak under normal circumstances as we are speaking now. But you can sing a song you’re probably a terrible singer I don’t imagine you’re. But , nonetheless you do something that resembles singing.
Loyd James Fox III 23:38
I’m not singing way out loud, like Pink does. But I’m mouthing the words and it’s coming out of my mouth. And I’m like, this is weird. So I told the nurse this. And she said, Well, I guess that’s a plus. Right? You know, it’s now three o’clock in the morning. And I’m not slept. Actually. I’m not going to sleep all night. I just can’t.
What It’s Like Being On The Other Side?Bill Gasiamis 24:09
What’s it like Jim? What’s it like to be on the other side of the hospital bed? You’re the guy that goes around and cares for people and make sure they’re well, and now you find yourself on the receiving end of that care as a patient. Did you ever in your wildest dreams, imagine that you one day might be a patient in the hospital where you’re so familiar?
Loyd James Fox III 24:39
Yes.
Bill Gasiamis 24:40
You did? It had crossed your mind?
Loyd James Fox III 24:45
The thing about it is is I didn’t think it would be my brain. Okay, I thought it would be my heart. I’ve been a diabetic since 1976. I was diagnosed when I was nine. Look, I’ve taken care of lots of diabetics. I knew that it was gonna happen. I just did, living every moment that I can, as best I can.
Loyd James Fox III 25:20
I’m telling you that the sunny and roses and, you know, rainbows coming out of my butthole. And, you know, it’s not like that I’m a normal human being I can be crabby. If my blood sugars are high, I can be an asshole. If my blood sugars are low, I can be violent. It’s the diabetes.
Bill Gasiamis 25:49
Okay. So when you find yourself in that situation, is it comforting to know the medical stuff that you know about what they’re doing next and how they’re going about this? Is that good? Or are you overthinking the negative side of that because you’ve seen the some of the you know, some of the bad luck stories?
Loyd James Fox III 26:19
Bad luck stories. I’ve seen ugly, awful, horrible, things. I don’t sleep because of those ugly, awful, horrible, things. If you want to call in the middle of the night, I’ll be awake.
Laughter Is The Best MedicineBill Gasiamis 26:42
Are you generally a positive outlook kind of guy, or are you not that way inclined? I’m just trying to get a sense of what a nurse who has your history in helping other people and what you’ve seen goes about thinking about their own experience with a life threatening situation?
Loyd James Fox III 27:05
I know for a fact that I’m going to die. Right? We’re all gonna die. It’s part of the deal. I know things, I know that the worst things can happen. I always try to be upbeat and happy and joke and laugh, because I truly think there’s really no better medicine than laughter.
Intro 27:44
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind.
Intro 27:53
Like, how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, doctors will explain things. But obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 28:08
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called seven questions to ask your doctor about your stroke.
Intro 28:27
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition. They’ll help you take a more active role in your recovery. Head to the website now, recovery after stroke.com and download the guide. It’s free.
Loyd James Fox III 28:47
Some of the stuff that I’ve seen and help people through to be able to laugh with them and joke with them. To get them through it helps. That in the question about the bed, a hospital bed.
Loyd James Fox III 29:08
I grew up in a pediatric ward at the same hospital that I’m in now. Lots of of the time in the hospital. Hospital experience as a patient 100%. You know, I I’ve heard you talk about how you went in for your surgery how you went in as the best patient that they’d ever seen right?
Bill Gasiamis 29:37
That was my intention.
Loyd James Fox III 29:39
That’s it. When I’m in the hospital, I’ll be the best patient you’ve ever had. I’ll be nice. I’ll be cooperative. I’ll let you do what you need done. I will go beyond what needs to be done. And so the part about being under the other side of the bed is it’s scary. It is scary. It’s what it is.
Bill Gasiamis 30:19
I hear you, I get what you’re saying in that you’re expressing it differently to most other stroke survivors who have had a stroke who are not in the medical field who are not caregivers who are not nurses.
Bill Gasiamis 30:37
You know, most other stroke survivors go down the path of they can clearly tell me the you know, it was the time when they realized they were mortal. It was a difficult time it was all of this.
Bill Gasiamis 30:46
And they didn’t have that, that years of experience of seeing good outcomes and seeing negative outcomes and seeing people pass away and the rest of it.
Bill Gasiamis 30:54
So we’re not programmed to know that that’s part of life. So when it comes our way, it’s like, oh, this is unexpected, I didn’t expect that this would ever happen to me.
Bill Gasiamis 31:15
Your experience is extremely interesting to me to listen to because you’re a diabetic patient, because you’re a nurse, you’ve got a whole much broader range of knowledge and information about a topic like stroke than the average person.
Bill Gasiamis 31:40
And your approach is really what is it? I mean, for me listening to your approach about we’re all going to die and all that, it’s kind of comforting, even though you’re very gently matter of fact.
Bill Gasiamis 31:57
It’s still kind of comforting to see that from you and to know what you know, and to have been through what you have, you seem to have an acceptance that most people don’t have.
Bill Gasiamis 32:13
And it’s a great skill, and it’s why I’m going there to try and understand it. Right. It’s acceptance. I feel like that’s what it is, would you describe it as acceptance?
Loyd James Fox III 32:22
It’s, acceptance, with a lot of gratitude in involved. Because in 2010, and this is going to be an interesting story. 2010 my father had a massive stroke. So I have a familial history of stroke also. Massive stroke, intubated, they didn’t know where his family was when he had the stroke, and it took a couple days.
Loyd James Fox III 33:06
And of all the things a girl I dated, when I first got my nursing license, was working in the ICU and saw my dad’s name. And my dad was Lloyd James Fox Jr. My legal name is Lloyd James Fox III.
Loyd James Fox III 33:27
So they found out that it was my dad, they called my house. I was in the mountains, camping with my five year old son, who was just about ready to go to the kindergartens.
Addiction, Diabetes And StrokeLoyd James Fox III 33:49
So he had the stroke, and then all hell broke loose. My dad was an alcoholic. And he passed that gene on to me. But I take things just a little bit beyond that. So at that point in 2010, I was taking opiates for shoulder injury that I got working in the ER and got hooked on him.
Loyd James Fox III 34:26
A doctor in 2014 decided that he was going to stop prescribing them. What does one do when he’s got a candy machine at work that gives you whatever you want?
Loyd James Fox III 34:47
I’m not saying it’s the right thing to do, but I ended up as a full-fledged addict and suffering miserably, because I didn’t have what I needed. It was awful. It was God awful.
Bill Gasiamis 35:09
You were in withdrawal or not able to access?
Loyd James Fox III 35:13
Drugs during the beginning of the week of my work week. And then by the end of my weekend, I would be in withdrawals. So I got caught. I entered a program for nurses in California here that allows you to hold your license, so you can’t work, really work on yourself, weekly counseling, weekly nurse support meetings. Weekly, or daily, for a year narcotics anonymous needs.
Bill Gasiamis 36:07
Okay, hang on a second, hang on a second. What you’re telling me there is a need for a specific program for addicted nurses to be able to attend rehabilitation, while maintaining their license, going through this rehabilitation process to get to the other side. And then hopefully, be well enough to go back to work?
Loyd James Fox III 36:35
Yeah, doctors, nurses, dentists, pharmacists, lawyers.
Bill Gasiamis 36:42
That is fucking amazing. So instead of treating people who get addicted like criminals, and taking their license, their ability to practice away and the rest of it is supporting those people to get rehabilitated.
Bill Gasiamis 37:05
And get off the addictive substances and get back to work. Man, that is amazing. I absolutely love the sound of that. And, but I don’t like the fact that you ended up there, or that there’s a need for it. But what an amazing program.
Loyd James Fox III 37:27
Amazing, so much that when I got out of the program in 2018, I ended up with pneumonia. They gave me morphine, for air hunger. And it started all over again.
Bill Gasiamis 37:45
Hang on a sec, what’s air hunger?
Loyd James Fox III 37:48
Air hunger is what you can get when you can’t breathe. Morphine relaxes you enough to where you can breathe.
Bill Gasiamis 37:59
Okay. And morphine is it a long term solution to a long term problem? Or is it a short term solution to a short term problem?
Loyd James Fox III 38:12
Short term problem.
Bill Gasiamis 38:13
It’s just a short term thing and then they just, it’s something to help get you over the line. But do they know your addictive personality? And did you go there willingly? Or do you get concerned? I gosh, I’m going to be prescribed morphine. Is that going to continue?
Loyd James Fox III 38:40
I thought I could handle it. I thought I had this and I could get through it. And I was wrong. I did the program twice, eight years. So get through the program. I’ve got enough gratitude that when I go to bed every night, I make list of what I’m grateful for.
Loyd James Fox III 39:17
From the smallest things of that I got kindling in my bucket because my son made it for me to the fact that I was able to get through the day without hurting anybody’s feelings or break anybody’s heart.
Loyd James Fox III 39:39
So back to the question of where I was sitting in that bed. I was grateful for the fact that I was sitting there alive I know I’m gonna go. I know that my life is shortened with my diabetes.
Loyd James Fox III 40:12
I’m not ready to go. But I’ve heard you say, God, higher power, the universe, whatever might be out there. I’m ready to go see if they want to take me. But if it’s not my time today, let’s get on with this.
Bill Gasiamis 40:43
Yeah, let’s make the most of it. So it’s quite the journey, diabetes at nine and then the challenges that you have to face with addiction and then the relapse and all that you’re 54 now does it get easier? As you get older? Do you grow the resilience that you need to make the bouts of the things that you do that impact your life negatively?
Bill Gasiamis 41:40
Have you got to the point where you’re decreasing the extent of the damage of the words damage, but the extent of the I’m going to use it anyway because I didn’t have another word, the extent of the damage that you caused in that time when you’re A addicted or etc. Do you know have you kind of become more skillful at moving beyond it and letting it go and dropping that behavior that causes the addictions and so on?
Loyd James Fox III 42:13
So this is the gist of it is that I used to think my dad was lying, that when he talked about his 12-STEP program, I thought it was a place that he just went to to drink coffee.
Loyd James Fox III 42:18
Right? If he had lived long enough, I would have to give him an amends for that. So about that feeling I had, but those were my feelings and you can’t take it away until you walk a mile in someone else’s shoes. You don’t know.
Bill Gasiamis 42:49
They’re legitimate. And they come from ignorance, because you don’t know any better. And you make assumptions. And that’s what happens. And I’ve learned that lesson as a stroke survivor.
Bill Gasiamis 43:21
There’s no doubt that I judged people who spoke differently, walked differently. Then, quote unquote, somebody who was normal or physically normal. And then I had a stroke. And then it’s like, oh, okay, what an idiot you were.
Bill Gasiamis 43:41
And it was a genuine, idiotic way to be because I was so ignorant. I had no life experience, I had never been through something that that impacted my ability to be myself.
Bill Gasiamis 43:56
And it was the most information that I had. So I did the best with it as I could. And I didn’t seek out enough information to make a to make the correct decision about how I’m going to approach somebody or speak to somebody.
Bill Gasiamis 44:12
But that’s one of the wisdom. wisdoms that come that came with having this episode. You know, 11 years ago, that’s, that’s one of the things that I gained from it, I gained the wisdom to not judge people and to and to give them the benefit of the doubt, and not to take not to take their behavior to heart and be personally wounded and offended by it.
Bill Gasiamis 44:41
Now, I can say that to you as a 48 year old, but there’s no way I could put that sentence together as a 23 year old, of course. You know, I’m going to take that to heart. Of course, I’m going to be wounded by their comments.
Bill Gasiamis 44:54
Of course, I’m going to think it’s personal. I don’t know but and you would have been similar you would have been in a similar situation. That’s what your addiction taught you. Amongst other things. It taught you to have compassion by the sound of things towards your father.
Gratitude And ForgivenessLoyd James Fox III 45:12
Yeah, so as for the, the wreckage of my behaviors, you walk through those, 12 steps, and they’re my steps, if you want to go to a meeting, there’s a meeting everywhere. So I recommend if you feel the need to go, go, but that’s not the message I’m sending here today.
Loyd James Fox III 45:42
The message I’m sending here today is that I’ve got gratitude in, in everything I do. So my wife this is this is how well it’s gone, is that my wife took off three months to walk me through and helped me with my recovery.
Loyd James Fox III 46:13
You know, you don’t get that unless they really care. And I had always wondered about my, the amends I gave to her and asking her for her forgiveness.
Bill Gasiamis 46:29
Let’s do the conversation that I really don’t know how to do well, anyway, let’s talk about karma. In a past life, you must have done some amazing things to get so lucky to get a wife like that, who has the background that she has, has that understanding that she has, who can support you and guide you through a situation like that.
Bill Gasiamis 46:53
I mean, that is such an amazing thing for somebody in your situation to have as a support mechanism, because many people who are addicts don’t have that kind of support mechanism at home, they can seek out the best type of support they can out of the home, but then they may not have that additional layer of support.
Loyd James Fox III 47:23
Yep. So she’s so supportive that she agreed to some pretty expensive treatments, you can’t call them treatments, some steps I’ve taken to help heal my stroke. Over here to my right, I showed you earlier the hyperbaric chamber
Loyd James Fox III 48:02
$14,000. I have a really, really good friend who used to be an ER doctor who now does rejuvenative medicine. And he gave me a list of things that you that you should do that I should do that he was doing.
Loyd James Fox III 48:33
Because he has a coronary artery disease, and he’s trying to fix it. This was one of the things that he mentioned to me. But I kind of call them this is gonna sound funny, the Voodoo medicine because nothing’s been proven that this works. I’m willing to take that chance.
Bill Gasiamis 49:07
Hyperbaric therapy is being used effectively for knee injuries and for other ailments, I know for sure there’s even probably good research about it. And as a nurse, I know that you want to make sure most of the time that what you’re doing and treat and how you’re treating people and what you’re prescribing.
Bill Gasiamis 49:28
There’s scientific evidence and real good proof that it works and that it’s not harmful and it’s more helpful than harmful right. And now you’re going into this space of out of the medical field, so to speak. Out of what you’re used to.
Loyd James Fox III 49:47
I’m going right to that line.
Bill Gasiamis 49:51
I was gonna say and I see that in so many stroke survivors who will tell you that Reiki is rubbish until they have a stroke and then they straight up the Reiki practitioner, or they’ll tell you that meditation is rubbish, and then they’re meditating.
Bill Gasiamis 50:08
For me, I went down that path and I would have tried anything, I would have tried slapping two fish together, if I thought that there was a possibility that that might make my recovery continue and be better.
Bill Gasiamis 50:23
So, I get it, like, I know that there’s that desire to solve problems, and at least, you’re going about it in a way that I think is quite reasonable. It’s a recommendation from a doctor, the therapy is proven for other for other challenges.
Bill Gasiamis 50:46
And it’s most likely not going to cause harm, it is going to cause some positive outcomes. And, if it doesn’t necessarily heal your brain, in that specific spot is probably doing good to the rest of your body.
Loyd James Fox III 51:05
So this is kind of weird. Over the last two-three years, when I get little cuts on my hands or stuff, it takes a while for those wounds to heal. I have a blacksmith shop in my backyard basically.
Loyd James Fox III 51:37
And when I’m out there, hitting hot steel and stuff, I can get injuries. Well, my wounds on my hands are healing, like 10 times better than before I got this thing. So it’s helping the wounds on my hand, or the scrapes on my legs to heal.
Loyd James Fox III 52:06
So I’m hoping that it helps in my brain. That we that being said, is that in China, Russia, Britain, I’m not sure about Australia. They pay for all kinds of different things.
Loyd James Fox III 52:34
In the United States they pay for the hyperbaric treatments, they only pay for hyperbaric treatments for certain things. Sudden stroke of the eye, gangrene, diabetic foot wounds, burn wounds that aren’t healing.
Loyd James Fox III 52:59
So they’ve got like nine things that the United States only pays for. So this is out of my pocket. But if I were in Britain, or if I were in Russia, for I was in China, I would be in one of these things. And it wouldn’t cost me anything.
The Hyperbaric Chamber And How It WorksBill Gasiamis 53:19
Yes. So out of curiosity, how long do you spend in the chamber? How does the therapy session go?
Loyd James Fox III 53:30
So what I do is, that I wear an insulin pump. So it gives me insulin throughout the day, I’ll give three units of insulin, get in the chamber. I have to take the pump off because it doesn’t, it doesn’t handle the pressure. Get in the chamber. Turn it on. And then I’ll sit in the chamber from anywhere from an hour to three hours. So I’ve spent a lot of time in there since I had the stroke in November.
Bill Gasiamis 54:10
Okay. Did you notice any changes? Is this something that you can hang your hat on? Can you say this is what other than the scars on my hand and all that stuff? Did you notice anything different now?
Bill Gasiamis 54:32
I am in fact very impressed that three months after your stroke, you’re on my podcast. That’s amazing. That’s just fabulous that somebody is capable of doing that after a stroke. And I’m grateful for that.
Bill Gasiamis 54:48
But then I do notice that you have some fragmentation in your thinking and in your speech and in your ability to begin and finish sentences, which I don’t know if it’s your normal way of speaking, or it’s as a result of the stroke.
Bill Gasiamis 55:07
But that’s how I was I’m very familiar with the feedback I was getting from my wife and other people about how I was communicating after the second bleed that I had.
Bill Gasiamis 55:23
So am I seeing you the way you were before stroke? Or am I seeing a slightly different way of communicating and to make the question a bit shorter than it has been. And what have you noticed about the hyperbaric chamber with regards to your stroke recovery?
Loyd James Fox III 55:45
So I feel that my speaking is better. When I first had the stroke, I had to stop. My brain has always been bing, bing, bing, bing, bing, bing, bing, bing bing bounce around this subject to that subject. That’s not new. Me going from one subject to another. Sometimes I have to be straightened out. Or, well, what about this? What about that? Or I’ll just keep rambling.
Loyd James Fox III 56:24
When I had the stroke when I started to talk like I did, when I normally did, I would slur all my words, all of my words sounded like I was drunk. So I had to slow my my thinking down and my speech down.
Loyd James Fox III 56:48
I’m doing that just because this is what the way it had to be after the stroke, right after the stroke, I had to slow it down. So the hyperbaric chamber was not my idea. It was my friend, Mike’s Idea. Mike Anderson, one of the best men I’ve ever met in my life.
Loyd James Fox III 57:16
His son ended up with a C7 fracture. We had some big fires in 2019, I think, big fires, burned his house down, left his garage, his son ended up with a C7 fracture. Ended up with a wound driving from San Diego to Redding. Because of a heater in the seat that got bumped. So they treated him for that wound in a hyperbaric chamber heart chamber.
Loyd James Fox III 57:55
And then after the 40 treatments, 40 treatments is the normal prescription for hyperbarics. And after the treatment, they bought a system and was using it while they healed and it was just sitting in his house. He invited me over and say hey, why don’t you get in this after he found out that I had a stroke.
Bill Gasiamis 58:30
So that’s how you got to it. So okay, that’s great. Now, I’ve done a bit of a online search about the benefits of hyperbaric therapy right. And it says it supports wounds to heal. It supports people who have had carbon monoxide poisoning, it can help reduce the harmful effects of that. It helps people reduce swelling and promote healing when they’ve had severe crush injuries.
Bill Gasiamis 58:57
It can help prevent the spread of gas gangrene, a serious bacterial infection by increasing the delivery of oxygen to the affected areas. Okay, it all sounds legit. You know, increasing oxygen to the brain is really good for the brain to heal and to operate better.
Bill Gasiamis 59:19
It can help reduce the symptoms of decompression sickness, which is what we know hyperbaric therapy for more than anything, diving and having the bins and getting the bins you can help reduce the effects of radiation injury by increasing the amount of oxygen in the bloodstream.
Bill Gasiamis 59:41
So for cancer patients, I imagine that is a useful tool and definitely mentions burns. It can help reduce pain, promote healing, and reduce scarring and people with burns.
Bill Gasiamis 59:56
And is used by Athletes, it supports improving apparently athletic performance by increasing the delivery of oxygen to the muscles. Okay there is no doubt that it has a medical benefit, because it’s been used to bring people back from the bends for many, many, many years before it was applied to other areas of medicine and before other people started to use it, for example, for burns and the reasons that you’re using it.
Bill Gasiamis 1:00:36
So I think this is going to make people curious, I did not know that you can buy one for $14,000. I mean, it’s not cheap. But the fact that you can buy one and have it in your home and access it.
Bill Gasiamis 1:00:51
And even then I imagine, once you’re done with it, there’d be a secondhand market for a good condition, hyperbaric chamber, and it may not end up costing you the full 14 grand, you might have to just cough out and pay for the amount that you lost in the buying and then selling of the product. And then I did a search just while we were talking about hyperbaric therapy in Australia.
Bill Gasiamis 1:01:20
Again, I didn’t know that it existed. There’s an organization here that sells tanks, and they have different versions of them. And they start at about 20,000 Australian dollars, which is roughly the equivalent in about time you do the conversion, all that kind of stuff.
Bill Gasiamis 1:01:41
It’s a similar amount to what you paid. And then they have a more expensive version, which is about $23,000. But I am just stunned that that is so accessible these days. I know $20,000 is not accessible for everybody, but it’s more accessible than it’s ever been. And I think you can rent them as well.
Loyd James Fox III 1:02:02
That’s what I’m doing with this one. I’m renting it. So it was a big cost to rent it. But I’ve decided I could rent this one and own it at the end of the three months. But I’ve decided that I want something that has an air conditioner involved.
Bill Gasiamis 1:02:27
Inside of it. Okay.
Loyd James Fox III 1:02:29
Because you start taking science into stuff, Boyle’s law, you increase pressure, you increase the temperature. This unit doesn’t have a dehumidifier on it. So when you compress air, you humidify you’re pushing the air in there and you’re humidifying it, or concentrating the air that’s in there.
Loyd James Fox III 1:02:59
So you get the humidity increased. So increased temperature increase humidity. You put a dehumidifier on it. It feels better. I’ve been in multiple chamber chambers now. So I know what I want. So and that’s why I did what I did. This is going to help me for the rest of my life.
Bill Gasiamis 1:03:25
Yeah. Well, fantastic. This has been a fascinating conversation. It has had so many layers and different things that we’ve discussed. I’m really buoyed by the fact that at 54, you’ve been through so much, and you’re still working towards making improvements and making changes that are going to benefit your life.
Finding New Perspective: Life After a StrokeBill Gasiamis 1:04:04
Often I asked stroke survivors, how has your life changed since the stroke and they’re not normally three months into their stroke journey, but I’m going to ask you that anyway. Because I feel like you’ve had another turn for wisdom or you’ve had another turn for thinking about life differently again. So how has your life changed since you experienced the stroke?
Loyd James Fox III 1:04:34
Everyday life I need to go back to work. But I have that problem that that you’ve talked about on many of your things about fatigue. I get tired, so fast. And I would really I would really like to know the only reason I know about it that It’s a stroke thing is because you’ve mentioned it all the training I’ve been through everything I’ve done. You’re the only one that has brought this up. Your, guest have brought it up.
Bill Gasiamis 1:05:16
Yeah. So strange. I can’t understand that. But that’s okay. Yeah, fatigue, quite normal, not not fun, and can be made worse by the food that you eat. So I know that as soon as I foods that are high in processed carbohydrates, like bread, like sugar, like pasta.
Bill Gasiamis 1:05:45
You know that food coma that we talk about after a Thanksgiving meal, or a big Christmas meal, or a big Easter meal, that can happen to me immediately after just a small amount of food.
Bill Gasiamis 1:05:59
That’s just a normal regular meal if I ate those types of foods, and especially after alcohol, so I still experience fatigue, as a result of my, my strokes, and my brain surgery and all the stuff that I’ve been through.
Bill Gasiamis 1:06:18
But I’ve been able to really minimize its impact and decrease the the severity of it by stopping the consumption, in my case of breads, pastas, and sweets, and sugary drinks.
Bill Gasiamis 1:06:42
So I might be kind of boring to hang out with at lunch, or a dinner. But at least I’m going to be awake, and productive, and I won’t have to separate myself from an event and go and rest and, you know, try and recuperate.
Bill Gasiamis 1:07:06
And it has worked for me, I know it works for other people, as well. But I’m not a nutritionist, I’m not trained or qualified. Anyway, I’m just talking about my experience.
Bill Gasiamis 1:07:18
And I don’t know what stroke and diabetes combined. I don’t know how that except, you know, interferes with fatigue and causes more fatigue. I don’t know about that.
Bill Gasiamis 1:07:34
But I do know that after my brain injury, I also had a thyroid condition. And the thyroid condition was causing the same neurological fatigue that I was experiencing after the brain injury. And at the beginning, it’s very difficult to understand what was happening to me.
Bill Gasiamis 1:08:02
And I was trying to get feedback and information from my doctors about why the fatigue is so debilitating. And I had kind of a double fatigue if you like because the thyroid wasn’t functioning properly, and the brain wasn’t functioning properly. And I was eating the wrong foods. It was just really terrible. I couldn’t walk from the couch to the toilet and back.
Bill Gasiamis 1:08:27
So after many doctor’s appointments and visits and many attempts to get to the bottom of the fatigue and to try and understand Google searches, you know what causes fatigue of the brain and all that kind of stuff.
Bill Gasiamis 1:08:43
And you get a number of different hits. I had these tests and they accidentally one of the tests that happened when I was in hospital because I was so lethargic, was they did a chest X ray that accidentally discovered that I had a nodule on my thyroid gland that was so large, it was the size of a baseball.
Bill Gasiamis 1:09:03
And it was and it had moved and deviated my windpipe and my esophagus by six centimeters, which is about two inches or three inches or something like that two inches, I think, to the wrong direction. So that scan was the one that revealed that I have a thyroid condition but I didn’t know the gravity of the situation.
Bill Gasiamis 1:09:26
And what eventually happened is a year after my brain surgery, I had surgery to reveal half of to remove half of my thyroid and, and that’s why I’m even more susceptible to fatigue because I have two predisposing conditions that both cause fatigue. And if I’m not careful, I can be really unproductive, you know, an entire day. And it’s not fun. It’s not fun being productive.
Bill Gasiamis 1:09:54
So if somebody out there is watching and listening, and they do experience fatigue, just consider some Other things that I said, Ask some trained professionals about what I just said, do a little bit of Googling and see if there’s some articles that are verified that are online that you can read about that. And you might make a massive difference to the way you experience fatigue.
Loyd James Fox III 1:10:19
Simple a simple blood test. Thyroid panel.
Bill Gasiamis 1:10:25
Yeah, thyroid panel. Exactly. Yeah, you nailed it. Because a lot of people have undiagnosed thyroid conditions. It’s why some people are overweight, and they can’t explain it.
Bill Gasiamis 1:10:35
And they don’t know how they’ve become overweight or gained weight all of a sudden. So maybe all the stuff we’ve discussed is going to just get people thinking, that’s really what we want to achieve here.
Bill Gasiamis 1:10:49
And, and share stories. I really appreciate you coming on the show and reaching out. Thank you so much for doing that. I wish you well on the rest of your recovery. And all the best in overcoming all the obstacles that that you need to overcome. And congratulations on how far you’ve come so far.
Finding Your TribeLoyd James Fox III 1:11:09
Thanks Bill. Fantastic. I searched you out. Once I got in the chamber, I searched you out. Maybe not you exactly. But looked for some of my people. You know, because there had to be an answer.
Bill Gasiamis 1:11:35
Thank you for saying that. Because you and the people that have already been on my podcast are my people. That’s exactly how I feel like they’re my people.
Bill Gasiamis 1:11:42
Because we get each other we understand. Without needing to really even talk really, we could have just done this in five minutes. We completely understand. But, you know, I get it. You’re my people. So thanks for being on the podcast.
Loyd James Fox III 1:11:55
You’re very welcome. It’s my pleasure.
Bill Gasiamis 1:12:00
Well, thanks again for joining us on today’s episode to learn more about my guests, including links to their social media and other pages and to download a full transcript of the entire interview.
Bill Gasiamis 1:12:11
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Bill Gasiamis 1:12:25
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Bill Gasiamis 1:12:34
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Bill Gasiamis 1:12:50
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Bill Gasiamis 1:13:09
And as soon as I receive your request I will respond with more details on how you can choose a time that works for you and me to meet over zoom. Thanks again for being here and listening. I truly appreciate you so you on the next episode.
Intro 1:13:23
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals opinions and treatment protocols discussed during any podcast or the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.
Intro 1:13:40
All content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis.
Intro 1:13:53
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Intro 1:14:09
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Intro 1:14:25
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Intro 1:14:42
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Jenny Clarke together with her daughter Emilia Clarke are the founders of the charitable organization SameYou.org, a non-profit that supports young adults who have suffered from brain injuries, including stroke.
Website
Youtube Channel
The Untold Story
Highlights:
00:45 Introduction
03:00 How Emilia Clarke’s Stroke Journey Began
10:34 The Five Foods To Avoid After A Stroke
17:29 Discovering The Stroke Community
28:04 The Importance of Getting Access To Brain Scans
35:34 There Is Prevention In Recovery
45:13 Regaining Control In Your Recovery
55:16 The Importance of Mental And Emotional Support
1:10:06 Telling Your Recovery Story
1:17:20 The Biggest Project by Same You
Transcription:
Jenny Clarke 00:00
What you said is you wanted to take back control. And I think that is such a fascinating topic in itself. Because what you highlighted was that you felt that you weren’t in control the others were in control of your recovery. And I think that so many people say that to us, but it’s sort of infantizing people. So it’s taking away your adulthood, your urgency about yourself.
Intro 00:32
This is the recovery after stroke podcast. With Bill Gasiamis, helping you navigate recovery after stroke.
Introduction
Bill Gasiamis 00:45
Hello, and welcome once again to the recovery after stroke podcast. This is episode 238. And my guest today is Jenny Clark, who together with her daughter Emilia Clarke co-founded the charitable organization, Same You.
Bill Gasiamis 00:59
Same You is a nonprofit organization dedicated to improving access to neurological rehabilitation for adults, particularly those recovering from brain injuries and strokes. Emilia Clarke is an actress best known for her role as Daenerys Targaryen on the television series, Game of Thrones.
Bill Gasiamis 01:18
Through Same You, Jenny and Emilia aim to raise awareness of the challenges faced by young adults in accessing neurological rehabilitation, and to provide support and resources to those in need. Jenny Clark, welcome to the podcast.
Jenny Clarke 01:34
Thank you so much, Bill. It’s a privilege and honor and I’m excited to find out what it’s going to be like,
Bill Gasiamis 01:40
it’s gonna be fun. We’re going to have a good time. I reached out to Same You via the Instagram page. Because sometimes when you don’t know how else to connect with somebody in an organization like Same You, and you love the work they do.
Bill Gasiamis 01:58
You just go like the quickest route. So I did that. And I said, Hey, is it possible for me to do an interview with Emilia Clarke? And of course, they said, look, Emelia is busy. It’s not possible. And then I didn’t think to say A. What about somebody else from Same You?
Bill Gasiamis 02:17
And a little while later, literally a few months later, I received an email from the amazing Veronique, and Veronique said, Hey, would you love to have Jenny Clarke on the podcast, the founder of Same You? And I said, of course I would. And therefore, I fulfilled my goal of connecting with you guys and getting you on my podcasts, so I can share the work that you do, because I love the work you do. I don’t like the way you got to doing the work that you do. So I’m wondering, though, if you could share a little bit about the journey that got you guys to be in this space right now?
How Emilia Clarke’s Stroke Journey Began
Jenny Clarke 03:00
No, thank you for that. So we were just completely unaware oblivious, of any issues that you might have with your brain until Emelia had her first brain hemorrhage. And that was just after she finished filming the first season of Game of Thrones, which was pretty traumatic for somebody just out of drama school.
Jenny Clarke 03:00
And we really don’t know why it happened. She was actually at the gym, doing the plank when the brain hemorrhage happened. So she was super fit, super young, early 20s, which is what’s really saved her life. So the issues that we first found was, which I can go into later, was it really interestingly, it’s very difficult to have general doctors diagnosed brain hemorrhages.
Jenny Clarke 03:59
But when she was diagnosed and was treated, and we realized everything’s fine, took a long time to realize that. We knew that she had a second mirror aneurysm. So two years later, she was on Broadway, and she went to have preventative surgery. And the US system is very different to the UK system. And we believed that we really could trust them to coil a very small aneurysm.
Jenny Clarke 04:30
And it didn’t work. It went very badly wrong, no fault on anybody because these things happen, because it’s so sensitive and friable. So she had a very, very serious couple of strokes open-head surgery fighting for her life.
Jenny Clarke 04:46
And then, despite everybody saying, Oh, she’s gonna lose this, he’s gonna lose that she’s gonna be whatever she isn’t and wasn’t. And so the result is that she has clinical fatigue, which she has to manage, that doesn’t really go away.
Jenny Clarke 05:04
But that’s about it. And you know, twice, and these near death experiences, we just thought, Well, my goodness, we, you know, she has a platform, maybe if she did start to tell people about what happened to her, she could maybe help normalize it in some way.
Jenny Clarke 05:22
Because we saw straight away that there was such little provision for helping people get their lives back after a brain injury or stroke. And because she was in her 20s, both times it is obviously, clear that when you’re young, and maybe haven’t quite got your identity together yet, whatever that might be.
Jenny Clarke 05:47
And then something catastrophic happens. And it’s your brain, which is, you know, arguably, you. And you haven’t got help, whether it’s physical, psychological, cognitive, speech, and language, whatever the things are, that you need, you really, really need the mental health support. Just really, in most countries, it’s patchy, or it doesn’t exist. So we just thought, let’s try and do something. So that’s how we started.
Bill Gasiamis 06:25
Was Emilia in the UK, or the US, for the majority of her, we’ll call it treatment or recovery?
Jenny Clarke 06:37
The first time she was completely in the UK. And so the wonderful NHS gave us. Intravenous paracetamol, we like that. In the US, she was given a cocktail of medley of terrible drugs, we don’t like that. And so that was all obviously about pain management at the beginning. But in terms of recovery, there was none offered in either country.
Bill Gasiamis 07:05
So you’re not saying anything that’s not familiar to me, this is the weird part, you’re talking about the American system and the British system. In Australia, it’s not that different. So my journey was in 2012. So around the same kind of base in time when nothing existed online to get support when I went home after the first bleed in my head, and it was just sick, go home, sit and wait it out for six weeks.
Bill Gasiamis 07:33
And then what we’ll do is we’ll reassess in six weeks when things have settled down, hopefully. And then it’s like, okay, so six weeks, almost to the day that I was supposed to be back in hospital for my follow up, I had another bleed. And then it was pretty catastrophic in that the size of the clot that was in my head started off as what I would call the size of your large fingernail.
Bill Gasiamis 08:00
And then it became about the size of a golf ball. And which meant that it was impacting way more of the brain. And I went home with cognitive deficits, that were so dramatic that I didn’t know how to start a sentence sometimes finish a sentence, I would forget about who came to visit me. I was really aggressive and angry.
Bill Gasiamis 08:23
I had a whole bunch of issues relating to trying to make my brain calculate things and work out things. And my working memory was terrible. There’s a whole bunch of issues, right. And I just by habit, I had been seeing a counselor for many, many years before my first bleed. So it was I think by then I would have been on that counseling journey for about 12 years.
Bill Gasiamis 08:52
It’s just something that I’ve always done. And when I got to my first appointment, after the second brain injury, and I had a conversation with my counselor, my psychologist about what had happened to me, she must have noticed a massive difference. And she’s the one that said, have you ever had anyone booking a neuro psych assessment so that they can determine what your deficits are, so that they can provide you with some support to help you navigate those deficits and do some work to potentially improve those deficits?
Bill Gasiamis 09:31
I said no, no one’s ever told me that I didn’t even know what a neuropsychologist is. So on that information, we went through the public system here in Australia, and I made a booking for an appointment with a neuropsychologist, but the earliest booking that I could possibly have was nine months later.
Bill Gasiamis 09:55
And I didn’t realize that because As my brain wasn’t working properly and my wife was in all sorts, I didn’t realize that nine months was nine months away that it was such a long time away. And by the time I eventually got to nine months, a lot of the deficits had decreased on their own and gone away. But we hadn’t done anything to do that. It was just a natural progression of the brain kind of dealing with or getting used to the blood clot. And as it decreased in size, because it was being absorbed by the body or being broken down.
The Five Foods To Avoid After A StrokeBill Gasiamis 10:35
A lot of my deficits just came back online. Hi, everyone, just a quick break and we’ll be right back to the interview. As a stroke survivor, I understand the difficulties of finding the right information about post stroke nutrition. So I developed a course the five foods to avoid after a stroke.
Bill Gasiamis 10:52
While most people are talking about what to eat after stroke to support brain health and recovery. Very few are talking about what you should avoid eating after stroke. If you want to support your brain to heal, and you are curious about the five foods that may make matters worse, when you consume them, then this course may be for you.
Bill Gasiamis 11:12
In the Fun Five Series of interviews, you’ll hear about what foods not to eat after stroke. But most importantly, why the interviews are done with a qualified nutritionist Stacy Turner and performance coach Matthias Turner. In the more than five hours of interviews, we discussed the five common foods that cause inflammation in the body and brain and how they could interfere with healing and how they could make fatigue worse.
Bill Gasiamis 11:41
For just $49 this five part series of more than eight hours of interviews with full PDF transcripts mp3 and videos will give you everything you need to know about the foods to avoid and why, the modules include Eight reasons to quit sugar after stroke, Seven reasons to quit caffeine after stroke, Eight reasons to quit gluten after stroke, Six reasons to quit dairy after stroke, and Six reasons to quit alcohol after stroke.
Bill Gasiamis 12:11
So visit recoveryafterstroke.com/courses. For this and other specifically designed courses that are made by a stroke survivor for stroke survivors. Once again, you will get more than eight hours of content. All audio is downloadable in mp3 format, so you can listen on the go. full transcripts of all the content to take notes on are available for download, or so that you can read instead of listen.
Bill Gasiamis 12:41
Presented by a stroke survivor for stroke survivors. also presented by a trained nutritionist and performance coach, you’ll get 24-hour access, lifetime access to the courses purchased and you’ll be able to interact with me in the comment section. Go to recoveryafterstroke.com and check them out now.
Bill Gasiamis 13:00
Of course it wasn’t dealing with just that. Like you guys, we were dealing with all the unknowns, all the uncertainties, all the emotional trauma, trauma. Well, the psychological trauma.
Bill Gasiamis 13:12
And then the lack of guidance at home meant that every time something weird happened to me or I felt strange or I wasn’t feeling well, we were always wondering, oh my gosh, is this another one? What do we do? Always second guessing ourselves, never feeling comfortable with any decision that we made about how we should proceed going forward.
Bill Gasiamis 13:43
And it meant endless amount of unnecessary in hindsight visits to the hospital, to wait again in waiting rooms to get assessed to get reassessed to have more MRIs, more CT scans and so on to see what was happening. So that we share in common.
Jenny Clarke 14:07
Yeah, and I think we share that in common with millions. And what we think, you know, after this journey of actually launching the charity, four years ago, in March next month, what we’ve learned is astounding, that this is such a prevalent problem. And it’s an emergency problem it’s always catastrophic and traumatic.
Jenny Clarke 14:31
Because whether you have a stroke or a anything else that happens organically in your brain, or you have some sort of an accident, sports or road traffic, whatever, which makes it a brain trauma. It is just so catastrophic for people and their families and their friends and their workplaces and the health service because everything you’ve just described so eloquently has such a major economic impact and knock on with readmissions.
Jenny Clarke 15:05
Preventing people getting back to work getting back to school and getting on with their lives. So it just still is extraordinary that this is not a topic that everybody is hotly debating, and trying to fix. I mean, I know the world is burning, and we have so many problems. But this is a really severe problem that isn’t hitting the radar.
Bill Gasiamis 15:29
Yeah, the world’s always been burning, and not only has always been burning, I’m somehow in that state in that situation. There’s been amazing progress forward to raise awareness about prostate cancer for men, breast cancer for women, amongst the many other amazing things that we have awareness about now, ALS, or Lou Gehrig’s disease, or Alzheimer’s or all those things, whatever they are, and when the stats are now I think they’ve been revised that one in four people will experience a stroke in their lifetime.
Bill Gasiamis 16:07
We in Australia still struggle to have people be aware of what a stroke is, what it looks like when somebody is having a stroke and what to do. If you are with somebody that’s having a stroke. And still, stroke survivors often tell me they went to hospital.
Bill Gasiamis 16:26
And if they went on the wrong day, Friday evening, or Saturday evening, they were often told to take a seat because they were probably drunk or probably took some drugs or did something like that. And then they did what they were told, and that made the situation and matters worse.
Jenny Clarke 16:47
Indeed, exactly. And in fact, we say if you put if we call it acquired brain injury, which is the clinical term for a stroke, or traumatic brain injury, so anything that isn’t a generative, and anything that hasn’t happened at birth to you, any other brain injury is called an ABI acquired brain injury. And that we reckon with UCLH. In London, that’s one in three people. So it’s astounding. So yeah, I think there is so much to be done. And I think one of the hard things when you’ve got such a large problem is really knowing where to start.
Discovering The Stroke CommunityBill Gasiamis 17:29
Yeah. And it sounds like that’s what motivated you. But that’s what motivated me to do what I’m doing. So in 2017, I thought well, it was actually in 2015, I thought, well, I’ve got to somehow find a community for myself. So it was kind of like a selfish thing. At the beginning. It was like, find a community for myself, to feel better about everything that I was going through and still had to come.
Bill Gasiamis 18:01
And I thought, Well, I’ll start interviewing people that I think are inspiring, who have overcome really serious health issues. So that I can, you know, have some role models and feel good about the possibility of my own recovery and moving on from this situation. And that led to a podcast that wasn’t called the recovery after stroke podcast that was called.
Bill Gasiamis 18:29
Well, such a while ago, I forgot what it was called. And, and as a result, I got so overwhelmed by the responses from people and the and the fact that I was being contacted every so often being told that that episode was necessary in that episode I relate to and thank you for this episode. And the rest of it, I realized I was onto something.
Bill Gasiamis 18:58
And I realized that what I was onto was the thing that I was missing when I was going through this because we had nothing we had just me and my wife and that in frequent communication with our doctors who spoke in medical speak anyway. And the only thing that I could speak to was the part of your journey which started in the hospital, and then that ended in the hospital, and then they weren’t able to speak to anything that came after that.
Bill Gasiamis 19:28
So I felt like I needed to do this for me, but then I realized that it’s doing a massive thing for other people. And that was unexpected. I didn’t realize in my state that that would be the case. And before we get to speaking about Same You and how you guys got to come up with the idea and develop it and create the charity I want got a bit of a sense of what it was like for you to go through the diagnosis and the hospitalization of your daughter.
Jenny Clarke 20:13
So I think parents everywhere we understand that when you have a child in their early 20s, that they’re still a child to you. They might believe that they are, you know, world beating professionals, but there is still such a strong bond. But you’ve gone through the whole process of leaving home university, drama school, whatever living away all of that stuff. And then you something you know, you always, again, a parent dreads getting a phone call, my phone is on 24/7, because I’ve got two kids.
Jenny Clarke 20:55
No other reason, really. Because you always think what if something happens, and so with my son, something happened earlier, which was, again, not good. But that’s all been managed. And then when we got the call for Emilia so I think that my reaction was one of complete terror. And it was, in fact, a New Zealand neuro radiographer that saved her the first time when I say saved her, effectively put a coil into her bleeding aneurysm that blocked it, and prevented a further stroke.
Jenny Clarke 21:37
And he did it very well. And it’s a great art. And so we were so lucky that we weren’t we managed, I fought to get her into the best place in UK in London. And that’s called the National Hospital. And colloquially known as Queen’s square, because that’s place that it’s in. It’s an old hospital, it’s linked to UCLH. And it’s somehow separate form from it, because it focuses on diseases and emergencies of the brain.
Jenny Clarke 22:09
So it was it was horrendous, it was the worst possible, you know, thought that I could have, because we didn’t know if she’d live or die. And going through that. That was pretty terrible. So but you know, it’s all about taking action, doing something not sitting passively. So I was one of those annoying women, really bugging the doctors every step of the way to find out what was happening.
Jenny Clarke 22:36
And to see what else they could do, and to just, you know, use my will to try and make her survive. And then we found out later, two years later, that I’ve got aneurysms, because the first thing they say to you, when did they discover you’ve got an aneurysm, is there anything in the family any familial experiences? And we said, no, no, not at all. And so I’ve now got three aneurysms.
Jenny Clarke 23:05
So exactly the same as Emilia to mirror aneurysm, one life had coiled as an emergency, which I didn’t know about, just by accident, I had a brain scan. And then I’ve got two other smaller ones. So that relates not just to Same You, but it relates to, you know, really quite a broad understanding of the issue of actually living with something a time bomb ticking in your head. And how do you deal with that?
Intro 23:37
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse, and doctors will explain things. But obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 24:01
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called seven questions to ask your doctor about your stroke.
Intro 24:20
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition. They’ll help you take a more active role in your recovery. Head to the website now, recoveryafterstroke.com and download the guide. It’s free.
Jenny Clarke 24:40
And what that can mean and the impact it has on everyone’s mental health. But yeah, to answer your question, it was the worst possible experience I could ever have. Apart from losing her course.
Bill Gasiamis 24:53
Yeah, yeah. Thank God, that it didn’t end that way. Now, I so often wondered what my parents thought, and I haven’t been able to have that conversation with them. It’s been this February will be 11 years, since the first instance. Now I know that they fell apart.
Bill Gasiamis 25:17
Personally, each of them fell apart in their own different way, because of the way that they responded, I could just tell that they weren’t able to manage the situation and the gravity of the situation. But I’ve never actually sat down to have a chat to them about that. And it’s very interesting for me to hear your response to what it was like for you, because I’m a dad, I have a 22 year old and a 26 year old, you know, I can only imagine.
Jenny Clarke 25:50
Wow what’s your skincare, tell me.
Bill Gasiamis 25:54
It’s called being young and dumb, and getting married way too early. And starting a family before I had planned it, but I wouldn’t change it for the world. And everything I did, has just worked out beautifully. And it’s amazing. And it’s fantastic.
Bill Gasiamis 26:11
And I’m 48 and it’s such a great time to have my kids around me because they are adults now. And we, in my early middle age, we have, you know, have an amazing connection and relationship. So I cannot imagine what it’s like to go through what you went through.
Bill Gasiamis 26:35
And at the same time knowing that material event arteriovenous malformations are sometimes potentially, in families, they run in the family. And discovering that my cousin in Greece, my dad’s niece also has an arteriovenous malformation that is causing her some dramas like epilepsy etc.
Bill Gasiamis 27:02
It puts me in that situation where I don’t know whether what I should tell my kids is go and get your head scanned or not. If we find that they get the head scan, and there’s something there, then what do we do with that ticking time bomb, so to speak all that information?
Bill Gasiamis 27:18
And then if we don’t do anything, you know, then do we just sort of bury our head in the sand and pretend that everything’s okay when it could well and truly be okay, but it may not. So this is kind of what’s troubling me about my journey. And then having kids that are, you know, vulnerable to life as well. And then me dealing with my own mortality, and then somehow, maybe sometimes even super imposing that potential mortality onto other beings that you love that around you. It’s just, sometimes it’s really troubling to think about it and contemplate it.
The Importance of Getting Access To Brain Scans – Jenny ClarkeJenny Clarke 28:04
No, I understand what you mean completely. Because I talked to many doctors, neuro surgeons, neuro interventionists. And many people, many of them have said to me, because there is the tricky question of do people have brain scans, because the only way you’re going to find out if there’s anything in your brain that has a potential of imploding or exploding or whatever way you want to describe it?
Jenny Clarke 28:37
If you can’t do anything about it, why alert people? So that’s, I think, maybe received wisdom in the UK from the established clinicians. But I think that while applauding them and being internally grateful, and understanding what huge a training a neuro anything has to go through, and what would we be without them? The whole point is that, that medicine today is science based completely.
Jenny Clarke 29:12
So everything has got to be evidenced. And there is a very gray area in my experience, about what evidence is. And so medical establishments, obviously, are in charge of our lives. And obviously, they need to be as sure as they possibly can. And I think that there’s got to be a revolution which I see happening all over the world, where there is much more of a balance between the scientific approach and the ancient emotional approach.
Jenny Clarke 29:45
So I’m not being in any way, talking about alternatives. I’m talking about growth and development of the science of medicine. And I think through broadening it and broadening everybody’s perceptions of how people can be helped. I’m my I would love to say healed, because recovery, which is the focus for our charity is about healing. And on so many levels, people can be healed.
Jenny Clarke 30:19
They may not be healed completely, they might always live a life that they didn’t expect to live. But we call the charity Same You, because we’re all the same, whatever catastrophe happens to us, inside we are the same. And it’s really hard to fight for your identity to be acknowledged by people that you know, or people who you just meet. And so I think it’s absolutely vital for everyone to know who they are.
Jenny Clarke 30:53
But that’s a bit of a digression. But to go back to your question, or maybe it wasn’t really a question a rhetorical question, giving me your experience, I think that people should investigate and know, because use a very strong cliche, knowledge is power. But if you are of a very anxious disposition, naturally, and people are, it is questionable whether if you’re an anxious person with fearfulness about the world and life, whether that will just make things worse for you.
Jenny Clarke 31:34
On balance, I think people should know, but then you’ve got the question of how expensive it is to be scanned and how it’s not in any health service, which is all in a failing around the world. It’s very difficult. So it’s a very deep and complicated question.
Bill Gasiamis 31:50
Yeah, again, I never know how to phrase this, I had the pleasure of interviewing a lady who lost her daughter to an arteriovenous malformation when the child was five years old. And she’s again, also moved to do something about the situation that she found herself in and then doing something to prevent it happening to other people. And one of the things that she’s advocating for in the United States, is free brain scans for people.
Bill Gasiamis 32:34
And they going around, and while I’m talking, I’m just trying to look it up on my website to find the episode. So I can tell people about it in case they want to go back and listen to it. And, they are in the process of raising enough funds to create to set up a clinic where they have their own machine that is supported by doctors I imagine and radiographers who are qualified to evaluate such scans.
Bill Gasiamis 33:08
And then from there, their goal is to basically for people who want to know is to give them the information so that they at least have a chance at potentially doing something about it if they choose. And again I found myself conflicted in the interview. Not at all, by the work that she’s doing the amazing work, there’s tireless work that she’s doing while dealing with the challenges of losing a child.
Bill Gasiamis 33:56
But then, with the idea of what do you do with that information? You know, how do you move forward with that information, especially if your child is young. But she assures me that there would if she had known, they would have done something about it. She says that in hindsight, I know that she says it in hindsight, but they would have done something about it and to be robbed of her child the way that she was robbed of a child at school, in class around her classmates, and then to get the phone call that they got.
Bill Gasiamis 34:40
It’s why wouldn’t that person want to go out of their way to find other ticking time bombs in other people’s heads and tell people about it and say, hey, you’ve got this, maybe you should take some action, or at least you should know about it. And I’m not normally somebody who struggles to talk on my podcast, or get words out or make sentences or put sensors together.
Bill Gasiamis 35:06
But this really bothers me, this is a real struggle for me to come to terms with because I’m as a father, struggling with that idea. And then I’ve had plenty of interviews with people that have been through it like you and, and other people. And it’s, and it’s just, you’re damned if you do and you’re damned if you don’t it’s a situation of that.
There Is Prevention In RecoveryJenny Clarke 35:34
No, it really is. And then there’s, you got the two critical words, I think prevention and recovery. And we focus on recovery. But in reality, there is prevention within recovery. And what I mean by that is if people have got support and are treated in the best possible way.
Jenny Clarke 36:04
And have access to recovery, rehabilitation services, whether it’s from clinicians, from therapists, from peers, or self help, you do prevent people from getting ill again, from having another crisis. And I think that the concept of being armed with information that they you have, potentially life threatening issue somehow feels that it’s very important for people to have that choice of knowing.
Bill Gasiamis 36:43
Yeah, I feel like I agree with you. And there’s a sense of a little bit of control where otherwise control is taken away from you, it’s put in the hands of other people. And, at least in this way, you’re partly control of your own destiny, and you make it a really good outcome. And if you don’t, at least, it’s a path that you took under your own steam.
Bill Gasiamis 37:08
And therefore, for me, at least, it would give me some feeling of not being out in the wilderness and not waiting for supposedly fate to take its course, it’d be an intervention that I could take and, and, and do something about being that my kids are adults. It’s their decision.
Jenny Clarke 37:42
But you’re there to guide even if they’re adults. So I think that what we see from all the thousands of people who’ve written to us is that you’ve got on the one hand, you know, the group of people who have gone through this problem, and they tell us that their needs and wants. And then you’ve got, on the other hand, the amazing clinicians who is not a bad word to say about them.
Jenny Clarke 38:12
But then if you see that they’re not like this, there is a very, very big gap between what people want and need and what clinicians believe that they have the ability to offer, or that people should have. So I think that one of the things that has got to change in the next years is this coming together of that dynamic, where you’ve got a much, much more open dialogue, and multitude of services that don’t currently exist in an organized way.
Jenny Clarke 38:50
Many services do exist. And fantastic. And they might be small, they might be unproven. And they’re the first, so in, you know, in universal health care, you always have to have something with a systematic approach. So I think that what we’re trying to do is to see if we can find ways of understanding what these new advances are, and understanding what, could be possible with trying to find pilots and funding some ways to test different interventions. So I think that is the future for me. And that also, obviously, is to do with prevention as well as recovery.
Bill Gasiamis 39:37
And we’ll get into talking about the same you in a moment, more deeply, but And as part of that thing that you guys do is it also creating an easy path to access those services for people that have had a stroke?
Jenny Clarke 39:54
We would love to be able to I don’t think that it’s in our power to do that but it’s about accessibility. So what we see is that wherever you might be, there is so many levels of severity of brain injury. In the UK, it’s a very complex NHS hierarchy. And if you have got severe severe brain injury, there are places to go.
Jenny Clarke 40:23
And you get automatic post discharge, or in fact, inpatient rehab, and then post discharge help. But it is quite, depending on the severity, it’s finite. And usually, and it’s the same in the States, you know, it’s four weeks, 12 weeks, 16 weeks, and we talk to people in 10 years after they’ve had their stroke or brain injury, and they’re still not in one piece, again, when they could be helped to be putting their pieces together.
Jenny Clarke 40:54
And living fulfilling lives in a much more easy way and a much easier way. And so that is such an issue. And so accessibility is one thing, and innovation is another. So what we still as a, I call us a startup charity, you know, when coming into our fourth year, we still are trying to figure out, what is the best approach for us to take. Because we don’t have ambitions to be you know, anything that’s got a lot of overhead, that is an organization.
Jenny Clarke 41:37
Because I think that is there’s plenty of people doing that. Andthey’re not really moving the needle very much. And again, no criticism, but they do what they do. But they’re just to me has to be a different way of approaching it that maybe could have more impact in a less conventional way.
Jenny Clarke 41:37
Organizationally, I mean, I don’t mean, again, and don’t mean alternative medicine, I mean, just structurally trying to solve problems in much more of a community a network of collaboration, as opposed to this 20th century in a large organization.
Bill Gasiamis 42:21
Yeah. And it feels to me that, at the moment, things are fragmented. Like you said, there’s amazing services providers of those services, but accessing them in a cohesive way that works for particular individuals, is really challenging. For me, I had, you know, one appointment in this side of town, the other appointment at that side of town.
Bill Gasiamis 42:42
And it was just terribly difficult to navigate, and fit all those appointments in considering the condition I was in, and the amount of time it took out of my day and the fatigue that I was experiencing and the resources that I had available to me and all those things, and it was just 1.3 appointments per week was just almost too many to get to.
Bill Gasiamis 43:08
And I did get to the stage where I got my rehabilitation to a point where my walking improved enough that I told my therapists that you guys are sacked I no longer will be coming to see you, you’ve done a great job, I’m taking the responsibility for the way that I walk myself now to myself, and I’m going to relieve you of that duty.
Bill Gasiamis 43:33
And that was because I couldn’t handle the three hour round trip that it took one hour to get there, one hour to be there. And then one hour to get back in the middle of my week. It was just so disruptive to my week that I needed to stop going there.
Bill Gasiamis 43:51
And I didn’t want to stop going there. Specifically, I wanted to put as much energy into my walking again as I could. But I just felt that I was better served doing that at home. Then allocating that much time of well, I’ll call the travel time wasted time to be there for an hour, you had to go two thirds of my time away. It was not in rehabilitation. It was a way in travel and I just thought it was nuts.
Bill Gasiamis 44:26
It wasn’t efficient use of my time. So I get it, I get what motivated you to put your heads together and come up with something to make a difference and I love I love that now just before we get onto the same younger, just let people know anyone that’s interested in listening to Paige to Episode 141 it’s about Gina Keeley and the foundation that she set up in the honor of her daughter Paige It’s called the Paige Keeley foundation. So you can just go to recoveryafterstroke.com/episodes, scroll down, and you’ll find episode 141. And you can have a bit of a listen to that story now.
Regaining Control In Your RecoveryJenny Clarke 45:13
But can I just say that you were just framing something which I think that’s got to be highlighted, what you said is you wanted to take back control. And I think that is such a fascinating topic in itself. Because what you highlighted was that you felt that you weren’t in control, the others were in control of your recovery.
Jenny Clarke 45:41
And I think that so many people say that to us. Because it takes i,. I can’t ever pronounce the word, but it’s sort of infantizing people. So it’s taking away your adulthood. And your urgency about your yourself. So I just at some stage, can we talk about that a little bit more? I think that’s fascinating.
Bill Gasiamis 46:03
Yeah. Let’s talk about that now. Because I’ve got time. For me so if I shed some more light on that, it’s exactly that. It’s the reason why I sacked my first neurologist, and team of doctors that were helping me after the second bleed. So what happened was, I went in for the first bleed at the Austin hospital here in Melbourne, it’s very close to home, it’s extremely convenient.
Bill Gasiamis 46:34
And when I went home and did my six weeks, as I was told, and then ended up back in hospital, I found that they were talking about me, at the end of my bed, but they weren’t including me in the conversation. And as much as I tried to involve myself or get them to respond to my questions, I kind of almost got brushed off.
Bill Gasiamis 47:02
And I’m the kind of guy that I need information good, bad or indifferent, I need to know everything about what’s happening to me, so that I can help inform the way forward. Because I don’t feel comfortable with somebody going down the path of making decisions on my behalf from their version of the world.
Bill Gasiamis 47:23
And from the version of the world where they consider themselves or elevate themselves to the point of expert, which they are in medicine, but they’re not in how I want my life to unfold and evolve. So I had a friend of mine, who was a radiographer at the Royal Melbourne Hospital, which is inconveniently further away from home.
Bill Gasiamis 47:51
But nonetheless, the fact that he was there, I was able to ask him to put the word out for me and find a neurologist. And these are the words that I said to him who’s going to talk to me. And he was able to find somebody who was willing to take on my case.
Bill Gasiamis 48:09
And that changed the course of my recovery, because from then on, even though she was the neurologist, and the person that was the expert at helping me stay alive, I felt like I was the one that was calling the shots. And I believe one foot wholeheartedly that I was because her approach was, tell me how you want to proceed. And my suggestion was, can we wait to not have brain surgery yet?
Bill Gasiamis 48:48
Are we at that stage where we can still wait? Or is it? Do we have to go in now? And she said, Look, we could probably wait. And in order to help you go down that path. Why don’t we do monthly MRIs for the next six months, and see how everything is changing or pay to noticing what differences there are so that we can make informed decisions rather than just immediately decide to go in and potentially, we’re maybe going in where we don’t need to.
Bill Gasiamis 49:26
So that’s what we did. And I got to that point where everything was going well and I was great. And about two and a half years from the second bleed. I had the third blade. And when I went to hospital, it was Kate Drummond, my surgeon who said, we’re going in this time.
Bill Gasiamis 49:48
I accepted I said no problem. She came back the next day and said I know I told you we’re going in. But are you on board? Do you really want to go in? I say I want this over and done with whatever comes, comes, it’s time, let’s get it done. And let’s move on with life, regardless of what that looks like after the brain surgery.
Jenny Clarke 50:15
That was a really vital element of your own humanity, and helping you recover whatever happened to you, because you felt that you had some decision making capability. Because when you’re in a hospital, and you don’t know what’s happening to you, it’s very hard to feel as though that you can do anything. And that’s you or your family around you or your friends.
Jenny Clarke 50:47
And I think and lots of people say, to me, recovery starts in the acute state. And it’s a great thing to say, but I don’t quite know what it means in practice, because I think we’re so again, use a word that will use a lot fragmented in our approach. And the pathway of care is so fragmented, and so haphazard, because it’s not systematic.
Jenny Clarke 51:16
It depends which hospital you’re in which level of hospital you’re in, which country you’re in which town you’re in, and how long it’s been, since you’ve had your trauma to actually being recognized as needing treatment. So I think that that is is such an issue.
Jenny Clarke 51:35
And I think that the recovery should be you understanding the bigger picture and being told the bigger picture quite early on. And again, that’s not medical practice, people only will give you the information that they think you need to know, one day at a time.
Bill Gasiamis 51:55
And yet, they will give many stroke survivors, the bigger picture on the downsides, the possible downsides it’s like, you probably never walk again, talk again, do anything and it’s like, hang on a second, you know, how about giving me the what’s possible speech? I don’t get that at all. That’s really so strange and bizarre, and yet, I hear about it’s still to this day in 2023. I hear about it almost all the time.
Jenny Clarke 52:24
Absolutely. And so I talked to a great group of neuro neurologists in the States, who, you know, when we launch said, you know, we’d love to see how we can support you because our membership in the States, 1000s, of neurosurgeons and radiologists, you know, that they don’t really have the understanding that you can recover.
Jenny Clarke 52:49
Because today people are told, okay, that’s it, you had a stroke. You know, we can’t do any more for you. You are where you are, which is patently untrue. Yeah, so that it’s, you know, it’s not to I don’t think it’s too high blown to say, we need a revolution in thinking to actually, you know, to every sort of, at every level, you know, we need wonderful neurosurgeons and doctors to understand the implications of their words, on patients and their families.
Jenny Clarke 53:28
And while they are doing it, for whatever reasons they’re doing it for, there has to be an understanding. People have to have hope. Because if you haven’t got hope, where can you Where can you go? Yeah, and there’s always hope, you know, any, there’s no one I’ve ever met or talked to, in this journey of the charity, that, you know, that can’t have hope.
Bill Gasiamis 53:54
So, it’s been a pretty heavy episode so far. But I want to transition from that, because I did interview an amazing guy, Dr. J Mocco MD, MS for Worlds stroke day 2022. And he’s a vice chairman of neurosurgery in the particular hospital that he works in in the United States. And he’s part of an organization called get ahead of stroke. And we had an amazing interview and he was so upbeat and encouraging.
Bill Gasiamis 54:32
And I clipped certain section of the podcast interview specifically because and I quote, I’m going to quote him and I’m going to read a little bit transcript and this is what he said. I want to make sure that people know there is hope, and we are making some kind of headway and he said.
Bill Gasiamis 54:52
“What I want to highlight is a positive thing that you just said and that I think is worth broadcasting which is people would say that after two years, they tied their shoelaces after three years, they walked a few miles. So that’s important with stroke, one of the amazing things is that you can keep getting better even two years. And three years later.”
The Importance of Mental And Emotional SupportJenny Clarke 55:16
Yeah, totally right. And, you know, it is, there is the equation of physical repetitions of exercise to be able to tie your shoelace, or to walk or to lift a cup. We also think that there is parallel to that such a big part of life is the mental emotional support that you need?
Jenny Clarke 55:46
Because while you’re doing physical repetitions? How would you get the motivation, day after day where you don’t see the changes that you pray and hope for immediately? Because it’s a slower recovery and how do you really keep motivated, and keep your your mind alert that will in turn give you a lot more in your life when you think it’s all darkness.
Jenny Clarke 56:15
So I think having, you know, a really, really structured approach to emotional recovery is vital. And I started Emilia and I started talking about emotional recovery right at the beginning. And you talked to neuropsychologists, clinical psychologists, and that’s obviously one of the words they use to describe, but language is so clumsy, isn’t it? I think the whole words that are around all of this issue, you know, people understand to a certain degree with a stroke is a brain injury.
Jenny Clarke 56:45
What does that mean? So many types of brain injury. And somehow, you know, we say all the time in the charity, obviously, and we hear it all the time. And it’s just, it’s a confusing name. And then when you think about emotions, and emotional recovery, you know, depending on who you are, as an individual, you could think, well, how important is that?
Jenny Clarke 57:10
Is that just is that very girly? Is it you know, you’re using all sorts of discrimination language to you know, to pigeonhole you. Anyway. So I just think when we talk about mental health, recovery, it’s more helpful. Because there is at least a level of understanding about mental health as well as physical health these days.
Bill Gasiamis 57:35
I love that. I love that what you just said, because at least the conversation about mental health is starting to happen and people are aware of it. So it’s one way to infiltrate the hearts and minds of the people that we need to get on board.
Bill Gasiamis 57:51
Because you’re right, going to the emotional part of the recovery really does, you know, mess with people, I know that because I am advocating for emotional recovery, after stroke as a very important second step to the physical recovery that happens from after the hospital. And when you put it out there, when you put out there the words, the emotional recovery, people don’t grasp the concept.
Bill Gasiamis 58:24
And often they’ve got their own barriers around going to emotionally challenging spaces in their own heart from past traumas, past relationship issues, or past challenges around emotions. And therefore, you’re thinking about, you’re looking at the peak of the mountain, you’re thinking of, I’ve got to be right at the peak of the mountain now and not realizing the path that’s ahead of you.
Bill Gasiamis 58:53
And that becomes overwhelming. And it’s like, we’re not going there. But at least the conversation about mental health has started to come into our vocabulary. And people are getting appreciation for what that means, especially after two years of lock downs, and COVID restrictions and all the stuff that we went through. Because most people can relate to that now.
Bill Gasiamis 59:16
But I like to tell people that stroke recovery is a mental, physical and emotional approach. It’s a three pronged approach, and that you have to address every one of them equally. Because if you don’t do any emotional recovery, after stroke, and you just do the physical recovery, you’re creating emotional energy around your stroke and your recovery that gets in the way of the rest of the physical recovery that needs to happen in the head.
Bill Gasiamis 59:57
And the mental recovery if that’s not dealt with then you also get in the way of the physical that recovery that has to happen in the head. And then you’re not supporting the body efficiently and well, because you’re wasting energy, overthinking things and becoming distressed and becoming anxious and becoming depressed and a whole bunch of other things.
Bill Gasiamis 1:00:26
So I feel like part of the journey for me that made me brag about my success and brag in a lovely way to encourage other people brag about my success was that I feel like I’m fully healed. Even though I live with deficits every single day, I feel like I’m fully healed from my stroke experience, because I was able to do all the mental health work, or the emotional health work, and then all the physical work that put me back on my feet, and made me my ball and access and be a part of my community.
Jenny Clarke 1:01:17
Yeah, you’re so right. So it’s an artificial barrier between your mental health and your physical health. It shouldn’t exist. It’s a project of the 21st or 20th century medicine. And hopefully, in the 21st century, that is going to change. Because it is about, you know, we have a wonderful supporter, somebody who had a very serious brain injury. And she’s a copywriter.
Jenny Clarke 1:01:44
And she’s worked with a wonderful animator who’s got a fabulous, we have a wonderful animation, which is the words of people recovering from brain injury, explaining what it’s like, to people who don’t know, and that’s on our website, and I can send you a link.
Jenny Clarke 1:01:57
But this wonderful girl said, brain injury just doesn’t happen to the brain, it happens to the whole person. And that is something that has to be acknowledged because of the complexities of this. It to me, that’s one of the simplest ways of defining what a brain injury is.
Jenny Clarke 1:02:15
It’s a trauma that happens throughout your body and your mind and your brain. And there are no, there’s no difference between your brain and your body. It’s gotten in terms of healing and recovery. It’s got to be done simultaneously and have as much effort put into it.
Bill Gasiamis 1:02:34
Completely agree with you. When I went to my psychologist recently and had a conversation about overcoming life’s challenges, we got to the part of the conversation where I challenged her understanding of the origins of the word psychology. And because I’m from a Greek background, I think I’ve got a bit of an advantage.
Bill Gasiamis 1:02:58
And she was kind of a little bit perplexed that I would ask that question, and she wasn’t actually able to give me an answer. And that didn’t diminish her ability to support me and be an amazing guide in my life. Absolutely not. But it gave me an insight into the world of help. That if somebody is a psychologist, and they don’t know, the origin of the word psychology, and what it actually means that shows how far away we’ve come from, where the healing needs to be.
Bill Gasiamis 1:03:42
And the fact that we’ve elevated the head to the point of being the most important thing that we need to pay attention to, and provide resources to. And we’re missing the other part. So I had, of course, researched the word I had read about it extensively over the years, I knew about it, because I’m Greek background, and I’m pretty fluent in Greek.
Bill Gasiamis 1:04:02
And then I Googled it, like I have just now so I can read it to you. And the origin of the word psychology is formed by combining the Greek word psych, which actually means soul. And, then with the word, logia, which is words, but also reason.
Bill Gasiamis 1:04:31
So it’s and logos refers to the head, it does kind of refer to the head. So it’s kind of a combination of these two words. And what I get from it is that it’s about the it’s like the soul logic. Its first word in the word psychology refers to the soul the pshyche and then it refers to logic.
Bill Gasiamis 1:05:02
And when you have a conversation with somebody who’s a psychologist and been to school for probably 10 years, and is amazing at their job, but they don’t know that, it just shows where the disconnect is from the professions that help, and why sometimes they miss the mark, and aren’t as effective as they could be in guiding people to get beyond the mental health issues and the emotional issues and all the stuff that they go through.
Jenny Clarke 1:05:39
So what are we going to do about it?
Bill Gasiamis 1:05:40
What we’re going to do about it is we’re going to continue this journey, and we’re going to support each other. And we’re going to promote organizations like Same You, we’re going to continue bringing together people that are on our team that think the way that we think that have the backgrounds that we need them to have.
Bill Gasiamis 1:05:40
Like Dr. J Macco, for example, and all the other people that I’ve interviewed who are advocating for change, and we will make a difference. It’s just a matter of how big you want to make this and how much time you have in front of you, and how much effort we’re all willing to make?
Jenny Clarke 1:06:31
Well, everything, I think that the whole way forward is based around giving people their own permission to do something about it. We’ve talked about this a lot. So building communities that will make a difference. I don’t know how to do it. I wish I did know how to do it. But I know that what needs to happen is there needs to be a call for change from the people who have been affected by the change.
Jenny Clarke 1:07:03
So you’ve got these huge issues like climate change, and we’re all affected by that. But it’s the vanguard of people who really see what’s in front of them that making a difference. But with something like cancer when I was a child, which is a long, long time ago, and my mother’s large female family all had cancer of some sort.
Jenny Clarke 1:07:28
It was a secret, it was a stigma. It was ashamed, you had to be ashamed. And you didn’t mention the C word. And we were whispering about it. And so the secrecy around that, which has completely changed by so much effort by so many people, that I sort of equate, that’s where we are with brain injury and stroke problems, because people are people still see having a brain injury as having something to be ashamed of.
Jenny Clarke 1:08:03
And something that is stigma associated with it. It took Emilia a long time to talk about it. And we were told that she shouldn’t talk about it. Because nobody wants to hear about people with a brain injury. Because it means that something’s wrong with you.
Jenny Clarke 1:08:21
And if you look around the world, how many people with a public profile stands up and says, I’ve had a stroke or a brain injury. You can name about four or five people. And sometimes they are way, way older than when it’s happened to them.
Jenny Clarke 1:08:40
So I think that there’s a reason for that. And we’ve got to have everybody banding together to saying, well, you know, what’s the stigma, if something happens to you. It’s not anything that you can do something about, but you can take control of the way people view you and view your identity.
Jenny Clarke 1:09:00
That’s, I think, vital. We need to start a movement for change. And we’ve got the we’ve got everybody who’s experienced it. They’re the people and we’ve got to find mechanisms to help people come together to build communities in their local area, to connect to other communities.
Jenny Clarke 1:09:19
And then its got to have a life of its own, because they use a lead movement for change, demanding better recovery services, demanding better understanding of the issue, and demanding a change of attitude for people who are trying to live their lives after something’s happened to them.
Jenny Clarke 1:09:39
Just like cancer, you don’t look at somebody with cancer and judge them. But there’s judgment with people. When you think you’re meeting somebody with a brain injury, and you’ve alluded to it, you know, I’ve met so many people, you know, they can’t handle that change at a supermarket checkout, and people sort of push past them and think they’re drunk, or on drugs, or, you know, there’s a lot, you know, just a lot.
Sharing Your Stroke Recovery StoryJenny Clarke 1:10:06
So we need to start somewhere. And so what we’ve been trying to do is just by starting to say to people tell your story to us, because Emilia launched the charity on the 21st of March 2019. And she said, I’ve told you my story, because she told it to the New Yorker to the edge of the New Yorker. And she explained what happened.
Jenny Clarke 1:10:30
And she said, Now you tell me your story. And so our charity is being shaped by the response. Because when we started the charity, we didn’t really know what to expect. We were sure that we wanted to find funding to help with research, particularly for young adults after brain injury. And we also see that there’s lack of training in mental health.
Jenny Clarke 1:10:56
And we see that there is a lack of innovation. When we’re mainstream technology, like, you know, using zoom that we’re doing now, can be used with clinicians to do group therapies and recovery programs. And the COVID, we were able to do that in the UK with COVID. And we funded a pilot that has gone on to get extra funding from other people. And so now with that spreading in the UK.
Jenny Clarke 1:11:24
So there’s so many things that we can do, but the thing that is extraordinary about our charity, is that shaped by people who have actually experienced brain injury in their families, because we have something called portraits. And I have a team of three amazing volunteers. And Viro, who you met, is now working for us doing other things as well.
Jenny Clarke 1:11:45
But she has been managing a team. So people writing to us, we ask them if they want to tell their story in public. And generally people really do. Because sometimes people say it’s the first time they’ve ever really talked about it and being honest. And that is a therapy in itself.
Bill Gasiamis 1:12:06
That’s my experience with stroke survivors who come on, haven’t spoken to anyone about it for 10 years, and decide that the first person they’re going to speak to about their stroke is me on the podcast that goes out to the whole planet.
Jenny Clarke 1:12:22
We’ve got to learn from that. I mean, everything is a learning experience, isn’t it? Because these things are just so many, there’s still lots of secrets in here when we got to just get rid of all secrets to deal with brain injury.
Bill Gasiamis 1:12:36
Yeah, who are some of the partners that you guys have come together with?
Jenny Clarke 1:12:42
So in the States, we started off with Spaulding rehab, Hospital Boston. And so we funded through Emilia, her own money, and also doing silly things online when she was in Game of Thrones that people wanted to donate to win, opportunities to meet her and be on the red carpet.
Jenny Clarke 1:13:04
So we raised a lot of money by the generosity of all of her fans. And so we’ve funded a major three year program, where the particularly young investigators and Spaulding a wonderful hospital, part of the Harvard Medical Group, are looking at why some people are resilient, more resilient, in their approach to recovery than others.
Jenny Clarke 1:13:27
So that’s something that hasn’t really been looked at too much. So that’s happening. And that’s a very big project. We then have worked with the Royal College of Nursing in the UK, and said, we really want to see how we can support nurses, because that’s something we haven’t talked about. But we see that how the importance of nurses are to world health and to individuals health.
Jenny Clarke 1:13:50
So our personal journey was helped tremendously by Emilia as nurse Tina, that years and years after her first brain injury, we still were able to talk to Tina, when there was a fear that something was going wrong. So we funded the first of its kind training program for neurological nurses to look at how important research is that’s one module, how important mental health recovery is, never been looked at before, and then obviously, the physical recovery.
Jenny Clarke 1:14:21
So it’s a program that’s run by Edinburgh, we’re in the second year. And we would love to be able to put that to different hospitals and universities and to share the learnings because it’s something that’s just very little training. So that’s the Royal College of Nursing in Edinburgh University. We’re also funding starting a major research project with Edinburgh again through the World College of Nursing to see if we can really identify the need in terms of sizable chunks of data about the need for neuro recovery, particularly in young adults.
Jenny Clarke 1:15:01
And so those are ongoing, major, major projects that we fund. And then we started working with UCL UCLH, Queen Square, when we started the charity, our first office we had, we don’t have an office now because of COVID. And you know, who needs an office these days, but it was in Queens square, so we could be physically close.
Jenny Clarke 1:15:22
And so I’ve been working almost daily with UCL experts in rehab. And so we started to do what they call neuro rehabilitation online enroll. And I alluded to that earlier, which was just in COVID, when people couldn’t come into a rehab in a hospital or community nurses can’t go to it, or therapists can’t go to you. How can you do it? So this is a program that can easily be taken by any hospital, any group of therapists around the world.
Jenny Clarke 1:15:56
There’s a wonderful man, Professor Nick Ward at UCL, and he and his team and I worked on what that could look like. And so we have 10 people, 12 people on a screen with a number of people as a programmatic approach. So you can have, for instance, physiotherapy, you would think how could you do group physiotherapy, and that was the barrier. At first, the clinicians themselves didn’t think that it was going to be effective and impactful.
Jenny Clarke 1:16:24
But they worked out very quickly, if you had two physiotherapists one giving the exercises, and the other one watching and noting down what people were doing and able to do course correction. That worked. They also included something wonderful called Carers Cafe as part of this digital group therapy, to really talk to the husbands, wives, partners, lovers, children, you know, parents, to get them to talk about the issues that they face.
Jenny Clarke 1:16:56
So that’s been great. So we funded that for six months in the UK in London. And after the funding ended, and we couldn’t afford to do any more, they got together themselves as a peer to peer group, then we got some more funding from the wonderful UK National Lottery. And so that’s not being rolled out in Lancashire, with another hospital group, where they’ve taken their therapists and what they look like because every group is different.
The Biggest Project by Jenny Clarke And Same You
Jenny Clarke 1:17:20
And they’ve interpreted the Enroll concept to fit what they can do as an addition to their recovery programs. And we’re on the verge of the National Health Service, seeing if they can be commissioned, so it’s going to be rolled out. And maybe it is, maybe it isn’t. But that’s one of the things we’re doing. And then our big project is a real blue sky blueprint for what could a recovery center of the future look like.
Jenny Clarke 1:17:51
So I’ve been working with UCL for years on this. And we built it and built it and built it. And so it’s massive, and it’s far too big to try and get funding for. But we’re just on the point of getting some funding fingers crossed in the next couple of weeks, where we can start to work in a small way to work out the feasibility of a mental health pathway. And the idea of a feasibility study is to really interrogate with researchers as well as clinicians.
Jenny Clarke 1:18:21
And so it’s going to be acceptable as an evidence-based, cooperative program, where patients and their families are saying what they need and want for mental health support. And so we hope we’ve got the funding secured for that. And that’s going to be a six month program. And then we hope we’ll get funding to pilot that in London, and then build that into something that we can now see as a vision of prevention and recovery center that can be lifted and shifted around the world.
Bill Gasiamis 1:18:54
Wow. Sounds like you’ve been busy.
Jenny Clarke 1:18:57
And we haven’t got the money. So anybody listening to this would like to get involved. Please send me an email jenny12@sameyou.org
Bill Gasiamis 1:19:09
We’re gonna have all your details there so people can connect with you. I love the sound of the possibility of a specialized hospital or specialized care facility for people and so that you guys can take them through the whole holistic approach to recovery from a brain injury.
Jenny Clarke 1:19:31
Using the performing arts, using the visual arts, using the environment using healing buildings using really, really different things.
Bill Gasiamis 1:19:40
You may be aware that Olivia Newton John was a resident of Melbourne before she hit the big time became popular in the United States and around the world. And as a well loved Melburnian. She was very were heavily involved with because of her couple of cancer diagnosis earlier on in her life.
Bill Gasiamis 1:20:09
She was a very big and she played a massive role in creating a similar type of center in Melbourne called the Living Olivia Newton John Center, I think that ONJ Cancer Center, and they were able to bring in things like music therapy, and a whole bunch of other things. And my wife who’s doing a psychology, psychology degree who by the way, knows the origin of the word psychology. She’s doing the final years of her masters.
Bill Gasiamis 1:20:58
She was able to as one of her projects, she was able to do a study to see how people responded to I’m pretty sure it was music therapy. And reported back to you know, school the findings, it was an amazing insight into how, with enough noise, for lack of a better word.
Bill Gasiamis 1:21:29
You’re able to create and generate the movement that brings the people together, that raises the money that funds the center that allows people who are experiencing cancer to go to and have the medical treatment and in the same place have all the other necessary treatments that support the medical system, and really add quality of life.
Bill Gasiamis 1:22:04
While people are going through some of the hardest times of their lives, so it’s not like it has never been done. And I feel like you’re on the verge of something amazing. You know what they say, to be an overnight success, it takes about five to 10 years, so you’re not that far off.
Bill Gasiamis 1:22:24
And then one day you’ll be an overnight success, I’m very happy to get behind the work that you guys do. It’s exactly why I started the podcast to raise awareness about not only what it’s like to be a stroke survivor, or a caregiver for a stroke survivor or a family member or a stroke survivor, but also to bring awareness to amazing organizations like Same You that are doing the type of work that I would have benefited from if it existed where I live.
Bill Gasiamis 1:22:54
And it’s so challenging for me to thank people for doing the work that they’re doing. Because the only reason I know you’re doing the work that you’re doing is because you’ve gone through something traumatic and life threatening and difficult. And you’re living with, you know, some things that are in your head that you’ve got to contend with.
Bill Gasiamis 1:23:21
So I’m really glad that we connected I don’t feel that this is going to be the last time we connect and work together or support each other. I definitely feel that I’m on board. I’ll help wherever I can. And however I can. And if anyone wanted to donate to sameyou.org, how would they go about it? What’s the best way?
Jenny Clarke 1:23:48
Well, it’s very simple. It’s on our website, sameyou.org You’ll see buttons everywhere saying donate. And you go into a simple system where you can donate in any currency. And you’ll also see the things that we’re doing. Not just the portraits, the stories, we have recovery home videos the people have donated. We have a wonderful neuro directory, which at the moment is only in the UK.
Jenny Clarke 1:24:16
We’ve got working we’re working with UCSF in the Bay Area in the States to try and extend that. We’d love to have, you know, Australian ideas and therapists and clinics and hospitals that might want to get involved. Everything is most most of what we do is funded by volunteers and are funded in terms of we have 21 volunteers around the world, some in Australia, certainly some in New Zealand with a wonderful Veronique.
Jenny Clarke 1:24:46
And across the states where people are giving their time to help Same You you because we can’t afford, you know, great graphics and you know, we have to pay, you know, hundreds of 1000 for it agencies. So we get through Make graphics for people who are wonderful at it. And they just donate it and do their time. So we have a fantastic group of people that support us now.
Jenny Clarke 1:25:08
But so you can donate, you can see the things, the campaigns that we run, you can see our new buddy program is going to be online soon where we’re starting in the UK. So we have buddy people helping each other. Because they’ve gone through it just as you’re trying to do with you and are doing with your podcast, how your experience is helping others with a program and on neuro directory.
Jenny Clarke 1:25:31
And, I think that by coming together and extending that, and extending a community and seeing how we can start to talk to build a movement. That would be phenomenal. If there was anybody listening to this, that’s got experience, ideas and energy around it. Maybe they talk to both of us.
Bill Gasiamis 1:25:54
Yeah, absolutely. I look forward to it. Anything that comes my way, I will pass your way. But at the same time, anyone that’s listening. At the end of the podcast, we’re going to have the shownotes, there’ll be the show notes recoveryafterstroke.com/episodes. That’s where you’ll be able to get all the contact information for Same You.
Bill Gasiamis 1:26:17
You can sounds like you can donate your time as well as money if money is not something that you can manage to donate. And you can also donate your creativity skills if you’ve got skills in creating something for the team that they want to put out whether it’s a flyer or graphics, or whatever it is. So that’s amazing. You can do that. Jenny, thank you for being on the podcast. Thank you for reaching out.
Jenny Clarke 1:26:47
I’ve enjoyed it so much, really. And thank you for doing what you’re doing. It’s brilliant, and will make a difference to so many people I know.
Bill Gasiamis 1:26:57
Thank you once again for joining us on today’s episode. I just love the work Jenny and Emilia are doing and the organization that they have set up, I’m thrilled that they are doing the kind of work that is making a massive difference to people’s lives. Now to learn more about my guests, including links to their social media and other pages and to download a full transcript of the entire interview, please go to recoveryafterstroke.com/episodes.
Bill Gasiamis 1:27:23
There you’ll find links to the same you donate page and if that’s something that you would like to do, they accept donations in any currency. And as well as that you’ll find the link to the short film untold stories of brain injury voices from stroke survivors. Go ahead and check it out. If you’d like to support this podcast, the best way to do that is to leave a five-star review and a few words about what the show means to you on iTunes, and Spotify.
Bill Gasiamis 1:27:51
If you’re watching on YouTube comment below the video it’s really important and it makes the video accessible to a whole bunch of other people like this episode and to get notifications of future episodes. Subscribe to the show on the platform of your choice. If you are a stroke survivor with a story to share about your experience, come join me on the show.
Bill Gasiamis 1:28:14
Interviews are not scripted, you do not have to plan for them all you need to do to qualify as be a stroke survivor care for someone who is a stroke survivor. Or you’re one of the fabulous people that help people who are stroke survivors just like Jeyie and Emilia.
Bill Gasiamis 1:28:31
So go to recoveryafterstroke.com/contact fill out the form. And as soon as I receive your request, I will respond with more details on how you can choose a time that works for you and me to meet over zoom. Thanks again for being here and listening. I truly appreciate you see you on the next episode.
Intro 1:28:51
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Their opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed all content on this website at any linked blog, podcast or video material control.
Intro 1:29:13
This website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis, the content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives.
Intro 1:29:36
Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional your doctor or your rehabilitation program based on our content.
Intro 1:29:52
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Intro 1:30:12
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The post SameYou.org: Jenny Clarke’s Vision for a Brighter Future for Brain Injury Recovery appeared first on Recovery After Stroke.
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The post From Emilia’s Aneurysms to SameYou.org: Jenny Clarke appeared first on Recovery After Stroke.
Successful Stroke Recovery – Discover the 10 things stroke survivors can do to have a great recovery and find the silver lining in their experience. Get motivated and uplifted by the resilience and positive mindset of these individuals. Watch now and see how a stroke can be a blessing in disguise.
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Highlights:
01:10 Introduction
04:01 What Stroke Survivors Have In Common
09:14 The Emotional Roller-Coaster Ride of Recovery
19:29 What’s Important About Neuroplasticity
29:50 Let’s Talk About Nutrition
41:38 What Happens When You Discover Your Purpose
46:44 Creating A Community
50:50 The Stroke Recovery Mindset
Transcription:
Bill Gasiamis 0:00
So if you’re somebody who is in pain emotionally, because you’re afraid to go with the emotional pain, you’re just swapping one emotional pain for a different emotional pain. And the one that you’re swapping out with is an emotional pain that lasts forever.
Bill Gasiamis 0:17
If you never deal with the emotional problems of the past, you are going to be living with the emotional problems and pain of the future, that will continue to come because that’s what happens in life stuff continues to come. We are not immune to life.
Bill Gasiamis 0:35
As you are aware, if you’re a stroke survivor, you’ve already experienced a bloody ton of life. And what you don’t want to do is have that cumulative effect impacting you negatively. And making things worse and decreasing the level at which your brain can rehabilitate.
Intro 0:57
This is the recovery after stroke podcast. With Bill Gasiamis, helping you navigate recovery after stroke.
Introduction – Successful Stroke RecoveryBill Gasiamis 1:10
Hello, and welcome to episode 237 of the recovery after stroke podcast. If you have been following me for a while, and would like to get updates more often go to instagram.com. And in the search bar type recovery after stroke and come and follow my page. Over there, you’ll be joining more than 5000 other people that already follow my page.
Bill Gasiamis 1:33
In those posts, you will see there are lots of people getting involved, just like you in conversations, sharing their experiences with stroke and learning from each other. If you’d like to support this podcast, the best way to do it is to leave a five-star review and a few words about what the show means to you on iTunes, and Spotify.
Bill Gasiamis 1:54
This actually means the world to me, and makes the show more visible to the algorithm and pushes it in front of more people who are stroke survivors like you that need this type of content and may benefit. In today’s episode, I will be answering your questions now. I made a post on my Instagram page quite a while ago now.
Bill Gasiamis 2:17
Which went, what are some of the stroke related questions that you would like my thoughts on? And I had a lot of responses. And I’ve had already answered a ton of them on episodes 224 and 225. So if you haven’t heard those yet, go back and have a listen to them. And in this part, part three. And yes, it took me 11 More episodes to get back to here. I will be answering a question from Andy Dovey, who was a guest on my podcast as well on episode 206.
Bill Gasiamis 2:55
And Andy had a cerebellum stroke. And he asked to hear my thoughts on the common threads between all the stroke survivors that I’ve interviewed. Now, it’s a pretty massive question. And I probably won’t mention all of the common threads, I’ll mention the ones that I think are important. And there are lots of common threads.
Bill Gasiamis 3:18
But the question that he asked still continues, and it says, Are there personality traits that you’ve identified that are more prevalent in the more “successful survivors?” What enables somebody to make more improvements than someone else? Is it the psychological? It’s the psychological aspects that intrigue him. That intrigued Andy.
What Stroke Survivors Have In CommonBill Gasiamis 3:45
So I’m going to answer that question, there is definitely a lot of things that I have found that are very much common in certain stroke survivors. And I will tell you what those are right now. Okay, so there are a number of things that make people feel like they are getting ahead and making a good inroad into the stroke recovery. And this is despite what the challenges are that they continue to live with.
Bill Gasiamis 4:17
So they may have deficits, they may have paralysis on one side of the body. They may have vision problems, they may have an inability to walk and talk 100% like they did before the stroke. But these things are definitely the things that make people stand out as “people who feel like they are achieving a really high level of recovery, even though they’re living with deficits.”
Bill Gasiamis 4:45
Now, one of the first things that I want to mention, one of the main things that I find is that those people have a recovery mindset. So you might ask what is a recovery mindset? Well, a recovery mindset is the type of mindset that is honed in or tuned in or fine-tuned to becoming somebody who recovers from their stroke, that does not mean going back to the way they were or the condition they were before stroke.
Bill Gasiamis 5:24
So it does not mean going back. And being the same as they were before they had the stroke, it means that they are going to take on this recovery, and they’re going to move towards getting better each and every day. And it is a mindset. So they don’t necessarily focus on the negatives, they don’t necessarily focus on what they haven’t got occur to, still or anymore. They focus on how far they’ve come and where they want to go.
Bill Gasiamis 5:56
So they’re looking at the type of things that they can achieve, and get better at rather than looking back at the things that they have lost or supposedly or maybe become worse. And what that does is that allows them to focus on seeing the wins, seeing how far they’ve come, noticing what they’ve overcome, noticing what they’ve been able to achieve, and not focusing on the negatives.
Bill Gasiamis 6:28
And that gives them a boost in this state of mind, that gives them a boost in the way that they feel about themselves. And that gives them encouragement to keep going forward and continue the focus on the goals, the things that they are going to overcome and the things that they’re going to achieve. So they have a recovery mindset. That is the first thing that they noticed.
Bill Gasiamis 6:54
Now the next thing is that all of the people who I’ve spoken to who seem to have a more “successful” recovery or feel like they are doing well within their recovery, have done some kind of emotional work. And when I talk about emotional work, I’m talking about work in the heart, they’ve gone back perhaps, and dealt with some emotional traumas.
Bill Gasiamis 7:21
And the reason why they’ve dealt with emotional traumas is because somewhere, they realize that those emotional traumas from the past that they harbor have been getting in the way of their recovery, because stroke is not a one approach thing, you have to address all the issues in your life to get out of the way of your recovery. And some of the things include mindset, like I said a bit earlier, but emotional recovery is a very big part of it.
Bill Gasiamis 7:52
Because without the emotional recovery. And without having dealt with the difficult emotions from the past, how are you meant to deal with difficult emotions from now, they can potentially all become, all too many or too much and put you in a situation where you are struggling, not only because you’re dealing with the new emotional challenges that you’re feeling because of the stroke.
Bill Gasiamis 8:16
But because of the cumulative effects of the emotional challenges that you’ve had, for an entire lifetime, that perhaps you were afraid to go toward, and deal with.
Bill Gasiamis 8:31
It’s a situation of going where the pain is, and then dealing with the pain so that you can overcome that pain from the past. Every time you do that you get better at overcoming traumas, from the past things that you’ve struggled with, with some emotional challenges, you’ll overcome them quicker than others. That’s why I recommend ticking off all the small things that you can as quickly as possible.
The Emotional Roller Coaster Ride of Stroke RecoveryBill Gasiamis 8:59
And then as you get good at dealing with the emotional traumas from the past, then you can deal with the current emotional traumas and the ones that are going to come in the future because let me tell you, stroke is an emotional journey. It is a roller coaster ride, it is definitely going to make it difficult for some people to handle what it is that they are experiencing.
Bill Gasiamis 9:25
I myself experienced massive amounts of emotional turmoil when I had my three brain bleeds, but by the third one, I had done a lot of work. So it wasn’t so much more traumatic than the first one was, for example, brain surgery wasn’t a breeze but compared to what I was dealing with with the first Brain Hemorrhage, it was a completely different experience.
Bill Gasiamis 9:53
And I gotta tell you that I did a lot of emotional work between the two and a half years from the first incident, to the third incident, and then brain surgery. And that help that I got. And that work that I did for my emotional challenges actually went a long way to making my recovery and learning how to walk again and use my left side again, and get back to my life again, it made it a lot easier.
Bill Gasiamis 10:20
Now, it took me seven years before I got from the first Brain Hemorrhage to feeling like myself again, or in some way, being able to say that I feel like myself, because I still have the numbness in my body, I still have the left side deficits, I still have some balance issues, I still have weakness in my left side, I still have the tingling sensation, and all the things that go with stroke when you’re impacted on one side of your body.
Bill Gasiamis 10:53
But my emotional experience, and the way that I think about that now is nowhere near what it was compared to what it was at the beginning of this whole process and this whole saga. So emotional work will help you overcome your traumas from the past, it will improve your emotional intelligence, it will help you overcome those ideas and thoughts that you had about whether or not it’s safe to go to emotional trauma and deal with it and take it on.
Bill Gasiamis 11:27
And it’ll help you get to the point of understanding that you are capable of dealing with emotional traumas from the past, you are capable of overcoming them. And you are able to become more resilient to the emotional turmoil. If you’re somebody who wears their hands on their sleeve, like I was, trust me, the more emotional work you can do, the better off you will be, I went and got help.
Bill Gasiamis 11:56
And I made sure that it was something that I focused on. And this is also what other stroke survivors have done, they’ve been able to get in touch with their emotional side, develop it, deal with it, attack it, face it, or whatever the words are that you want to use, they went where the pain was. And let me tell you about going where the pain is. Once you go there, the pain goes away.
Bill Gasiamis 12:21
So if you’re somebody who is in pain emotionally, because you’re afraid to go with the emotional pain is you’re just swapping one emotional pain for a different emotional pain. And the one that you’re swapping it with is an emotional pain that lasts forever. If you never deal with the emotional problems of the past, you’re going to be living with the emotional problems and pain of the future that will continue to come because that’s what happens in life stuff continues to come.
Bill Gasiamis 12:54
We are not immune to life. As you are aware, if you’re a stroke survivor, you’ve already experienced a bloody ton of life. And what you don’t want to do is have that cumulative effect impacting you negatively. And making things worse and decreasing the level at which your brain can rehabilitate themselves. Now, the next thing that people have in common, somehow they tap into their intelligence of their gut. So what do I mean by that?
Bill Gasiamis 13:33
Well, if you hear yourself or if you’ve heard other people say that I used my gut or I followed my gut, or it was my gut instinct. Well, that’s what these people have done, they’ve been able to somehow use their gut instinct to help guide their recovery.
Bill Gasiamis 13:33
Now, I did this a lot with my stroke recovery, my brain, after the second bleed, pretty much completely switched off, I was unable to use it to make any real decisions, any important decisions that are needed to make about my life, about my medical needs, about anything that was happening, my life basically went on hold. And it was just a holding pattern until I worked out the way forward. And it was my gut instinct that guided me really well at the beginning.
Bill Gasiamis 14:25
And a lot of people who I deal with, who say that they are doing well , “having a very successful recovery”, will go to the gut instincts. mine told me to set my first lot of doctors and the neurologists that I was seeing and change hospitals, because they were having conversations about me at the end of my bed, they are not including me. And when I did have questions that I asked about my prospects and about what was going to happen going forward?
Bill Gasiamis 15:02
They didn’t really want to commit and answer any of my questions. So I felt like I was alone, I felt like I couldn’t move forward with the people that were put in charge of my health care, especially since they weren’t involving me. So it was my gut instinct that said, you gotta get out of here. So I reached out to people that I knew.
Bill Gasiamis 15:20
And I made it, so that I could find a neurologist and a brain surgeon and a different hospital that will help me and will talk to me in a language that I appreciated. And as a result of that, I found that amazing surgeon, Professor Kate Drummond, who was at the Royal Melbourne Hospital, who answered my questions, spoke to me amazingly, her team was awesome.
Bill Gasiamis 15:46
And as a result of her amazing work and monitoring of my conditions, it took some time, but we finally got to brain surgery. And at that time, she did an amazing job of removing the faulty blood vessel in my head. And then I began the journey of rehabilitation and getting back on my feet. So I followed my gut instinct. And so do a lot of the people that I speak to about stroke recovery, they tune into the gut instinct.
Bill Gasiamis 16:15
Now there is a couple of ways that you can increase the conversation that you have with your gut, you can specifically go to your gut, and you can go there and you can talk to it. It takes a little while to respond. But if you close your eyes, and gently go and ask and place your hand on your belly, and ask yourself a question, and specifically ask your gut, what it thinks of that particular question, you will get an answer.
Bill Gasiamis 16:44
It won’t be immediate, it might take a few seconds, maybe 30 seconds or more, and you will get a response. So if you want to do that, pause this episode right now. Go there and ask a question and see if you get a response. Okay, so if you’re back now, you might have noticed the response or you might not have sometimes the gut will process the question that you asked that, and it will ask you overnight, and it will answer it overnight in your sleep.
Bill Gasiamis 17:14
Or you might have a big aha moment the next day. Now, if your guts not talking to you, one of the reasons it might not be talking to you is because it is being overwhelmed by the type of food you’re consuming. So one of the next things that the people who consider themselves having a good stroke recovery is that they attended to their nutrition.
Bill Gasiamis 17:40
But I’m going to come back to that, and I’m going to talk about it in a while, because there’s a few things that I want to get through first before I go to nutrition. So your gut brain is your gut, is also known as your gut brain. It’s been very commonly referred to now by a lot of people in the medical field, as a gut brain researchers, and a whole bunch of different people, you can just Google, any search on Google get you a result, when you type in what is the gut brain, you’ll get an amazing amount of information.
Bill Gasiamis 18:13
So you can go there and check that out. And there are books that specifically talk about the second brain in your gut, it is considered a brain, it has neural networks, it is where dopamine, serotonin, and a whole bunch of other neurotransmitters are created. And they are created in the gut to be used by the brain, the brain does not create a lot of those neurotransmitters.
Bill Gasiamis 18:40
So when you are eating incorrectly, and you are putting stuff in your gut, that is going to inflame the gut and make it difficult to digest. Your gut is going to decrease the amount of neurotransmitters, it’s going to decrease the amount of support that it can give to your brain. So your brain can go along and do the healing that it needs to do. And then as a result of that, so it can also support Neuroplasticity. So that is an amazing thing.
What’s Important About NeuroplasticityBill Gasiamis 19:16
That if you think about the fact that you have said the words I’ve followed my gut or my gut instinct told me if you follow the words, then I told you that yes, that’s because your gut is your second brain. That should just work for you. You should understand that and that should go well. And if you don’t, that’s okay because it’s a pretty new concept. But what you could do is go and do some further research on that and be amazed at what you find out.
Bill Gasiamis 19:42
Now, I just spoke about Neuroplasticity, in not so many words. When I refer to if you get out of the way of the of the gut and you give the gut what it needs to eat, to create to support the brain. One of those things things that the gut supports the brain to do is Neuroplasticity.
Bill Gasiamis 20:05
It supports the brain to create new neural pathways and overcome where possible some of the challenges that you’ve experienced with your deficits that are that are related to the stroke, if your deficits, physical, or if they’re speech deficits or hearing deficits, there could be some situations where those deficits cannot be improved. And that might be because the damage done in that area of the brain has permanently impacted those spots and damage them.
Bill Gasiamis 20:39
But if there are areas where there’s some damage, and there is some deficits that are not going to be totally impairing their person in a permanent way, the Neuroplasticity is the other thing that a lot of the people who talk about having brain plasticity
Bill Gasiamis 21:05
that the other people talk about, who have had a very successful or good or are having a great recovery, they take advantage of Neuroplasticity. Neuroplasticity is a thing that you hear about now, and 12 years ago, it wasn’t a thing you, never heard about it just before I had my stroke in 2011 there was only a few people talking about it.
Bill Gasiamis 21:31
But the time I discovered Neuroplasticity was mid to late part of 2012 and the research on Neuroplasticity was fairly new. Now I did an interview with one of the forefathers of Neuroplasticity, a gentleman called Dr. Michael Merzenich. And that was episode 108, where we discussed what Neuroplasticity is and help particularly it works.
Bill Gasiamis 21:57
Neuroplasticity is something that you can practice without being physically active, you can imagine yourself doing something. And that is creating new neural pathways in the brain, just as if they would be getting created if you were physically doing that thing that you would like to do.
Bill Gasiamis 22:16
So what’s the benefit of that? The benefit of that is if you’re experiencing fatigue, or you can’t get on your feet yet, or you don’t have enough hours for therapy, or you insurance company doesn’t pay for therapy, or you’re on your own and it’s unsafe to get on your feet, you can imagine yourself walking, you can imagine yourself moving your hand, you can imagine yourself doing the things that you want to get better at.
Bill Gasiamis 22:41
And Neuroplasticity will be kicking in to create new neural pathways to support that. So that when you do get on your feet and start moving your legs or start moving your hand or start overcoming the challenges that you have already given yourself a head start so that it is less foreign to you when you get to the point of doing the exercise actually physically or in person in a rehabilitation setting.
Bill Gasiamis 23:07
So a lot of the people who I speak to will be taking advantage of Neuroplasticity. And they will be making the most of their time when they are not being physically active or they can’t access rehabilitation services, so that they are improving the neural pathways in their brain and overcoming the challenges on their own as much as possible. So they’re very motivated to overcome and get better in this way and overcome their deficits.
Bill Gasiamis 23:40
So the next thing that they do is they start to pay attention to their sleep habits. And they want to make sure that what they do is overcome some of the things that they are doing that get in the way of sleep, here’s some tips to help you perhaps get better sleep. If you’re struggling with that. One of the things that I do is as soon as the sunsets, all lights in the house gets switched off.
Bill Gasiamis 24:11
So if I’ve got lights on in a dark part of the house or if it’s not very bright outside, all overhead lights get switched off, and what I do is put on lamps. And those lamps have got warm light bulbs in them, you can get them in LEDs these days, they used to be the old incandescent lamps, the style of the old, original lamps. And that color is a warm kind of yellowy, orangey red.
Bill Gasiamis 24:40
And if you can get lights and lamps that do that, that certain goes some way to supporting and mimicking the type of light that you get. If you were in a cave many, many hundreds and thousands of years ago where the sun has set and in order to illuminate your surroundings you had a campfire, the kind of lighting that you use is going to make a big difference to the way that your brain understands whether or not it’s time to start shutting down and putting you into a sleep zone.
Bill Gasiamis 25:12
And the reason being is because any fluorescent or very bright white, stark lights mimic daylight. And when you have lights like that in the house, your eye receives that information, and it shoot and makes the brain and the body and your circadian rhythm think that you are outside and you’re getting the UV rays that are for awake time. So it’s changing the cycle that you may or may not be going into to help you support, dozing off and staying asleep.
Intro 25:50
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, doctors will explain things. But obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 26:14
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called seven questions to ask your doctor about your stroke.
Intro 26:33
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery, head to the website. Now, recoveryafterstroke.com. And download the guide, it’s free.
Bill Gasiamis 26:52
You might have heard that blue light from TVs, computer screens and mobile phones are lights that interfere with sleep or can activate the brain to remain awake, even though it is bedtime. So it’s a good idea not to use those types of screens at night, at least an hour before you go to bed if you can switch those off. And if you have devices which allow you to use them in night mode, perhaps switch on night mode so that you can have those devices.
Bill Gasiamis 27:24
Change the color of the background lighting, decrease the blue lighting, and increase the warm, incandescent style lighting that mimics fire. So attending to sleep habits is really really important, go to bed at a regular time, every night. So that you start getting used to being in bed by a certain time and your body starts to know that it can start to wind down and decrease the stimulus in your brain.
Bill Gasiamis 27:55
And also, if you are struggling with sleep, and you think that you’re doing a good service by drinking alcohol, you are not going to actually be supporting good deep sleep, alcohol has been shown that it actually interferes with REM sleep, the part of the sleep cycle that helps the brain flush toxins out of it, refresh it and make it less inflamed. And alcohol does only potentially, maybe support people dozing off because it’s a day to you.
Bill Gasiamis 28:32
So it kind of puts you into sleep, but it actually makes you miss out on REM sleep on the deep sleep that you need. So if you’re drinking alcohol to go to sleep, you need to stop doing that, you can once again jump on Google and do any amount of research that you want about the link between alcohol and decreased quality of sleep. And there is just a ton of information.
Bill Gasiamis 28:55
So definitely don’t do that. Now, I know a lot of people on listening to this podcast will be consumers of marijuana or weed. And there are a lot of benefits for marijuana and weed. But it doesn’t help sleep either. It does today people and put them into a state of being able to get to sleep, but it does interfere with the sleep cycle. And it doesn’t allow people to rotate through the sleep cycle
Let’s Talk About Nutrition In Stroke RecoveryBill Gasiamis 29:25
as well as they would have if they were alcohol and weed free. So short-term gain, but long term it is actually changing your sleep cycle your, sleep habit and it is decreasing the quality of sleep that you’re getting. It is therefore decreasing the rest and the recovery that your brain can get. And as a result of that you are getting in the way of your recovery. So here’s some food for thought for you to think about.
Bill Gasiamis 29:54
Speaking of food for thought that’s a great segue, because the next thing that people do as they change their nutrition, and I’ve already mentioned nutrition briefly and about the benefits of nutrition on the gut brain. And what food does is definitely either get in the way of your brain health, or support brain health, it either inflames the brain, or decreases inflammation, and your brain after a stroke is already inflamed.
Bill Gasiamis 30:24
So what you don’t want to be doing is you don’t want to be increasing the inflammation in your brain, you do not want to be doing that, you want to be decreasing the inflammation in your brain. And the best way to decrease inflammation in your brain is to cut out certain foods. And this is where I get to talk about a little course that I’ve put together that specifically answers this question.
Bill Gasiamis 30:47
Now, the thing about nutrition, it’s not necessarily about what you should eat, which is really important as well, this particular course, and the information that I’ve put together is about what you should not eat. And in order to put this together, I’ve brought along a couple of amazing people who have been interviewed by me. And one of them is qualified nutritionist Stacey Turner and her husband performance coach, Matthias Turner, who are both Aussies.
Bill Gasiamis 31:20
And we got together and we recorded five interviews, where we spoke about what we call “The Fun Five Series.” Actually, the fun five was not something that I coined, that was what the guys coined, but I loved it. And I use it to name this course, because the fun five are the foods that you should avoid after stroke. And there’s a lot of reasons why you should avoid them after stroke.
Bill Gasiamis 31:44
And I’m not going to go into all of them here. Because it’s this particular thing took us five hours to explain and put together. So the five foods that you should avoid after stroke are sugar, caffeine, gluten, dairy, and alcohol. Now, I’ve already spoken briefly about alcohol. But you need to understand all of the reasons why you need to avoid sugar, caffeine, gluten and dairy after a stroke.
Bill Gasiamis 32:10
And how that is going to go do well to support your gut health, which is going to do well and support Neuroplasticity, which is going to do well and support a whole bunch of other things in your body. Now, in that interview, we do eight reasons to quit sugar after stroke and seven reasons to quit caffeine after a stroke.
Bill Gasiamis 32:31
It’s a really comprehensive discussions and interviews, 8 Reasons To Quit Gluten After Stroke, 6 Reasons To Quit Dairy After Stroke and 6 Reasons To Quit Alcohol After Stroke. Now, when you get them, you pay $49 to access those courses. And you will basically be able to sit down and listen to actually more than eight hours of content, not five, all episodes, all parts of this particular course are available in audio in mp3, they’re available in a video, you’ll get to see the video as well.
Bill Gasiamis 33:08
And you’ll be able to print off a full transcript of all the content. So you can take notes, highlight things that are important to you. And they’re presented by myself. And like I said to amazing people who know a thing or two about nutrition, and how to get the best out of people, and how to help people perform and overcome injury and be better at life. And from day to day and at work and all the things that they need to do. You’ll have access to it at any time.
Bill Gasiamis 33:40
You don’t need to wait around and get it at a specific time. You’ll get lifetime access to the course once you’ve purchased them. And you will be able to leave questions in the comment sections that I will respond and answer for you. You’ll be able to get in touch with me. And we’ll be able to speak about them. One on one, I’ll be able to answer your question specifically.
Bill Gasiamis 34:04
And hopefully you’ll get a lot out of that particular course, in order to access that course just go to recoveryafterstroke.com/courses. And you’ll see a couple of other courses there. But the one that you’ll be looking for is the 5 Foods You Must Avoid Eating After Stroke. It’s a very comprehensive course. It’s only 49 US dollars. It’s over eight hours of content. And it’s five interviews with two of the most amazing people.
Bill Gasiamis 34:32
So I’m going to wrap this up quickly by just saying the five foods that you need to avoid are sugar, caffeine, gluten, dairy and alcohol. Now the next thing that people do to overcome their stroke and to start feeling like they’re making some progress and that they are becoming successful overcoming the deficits and getting beyond this situation that they find themselves in is they’re getting physical. So what does this mean? Well, they’re not necessarily running marathons.
Bill Gasiamis 35:09
Although I’ve interviewed a lot of stroke survivors that have, I’ve interviewed stroke survivors that have run marathons with foot drop, some that have participated marathons, by not running. But by walking. I’ve interviewed people who have participated in marathons by cycling in different versions. There’s a whole bunch of different ways that people have participated in amazing, crazy events that they wouldn’t have dreamed of before stroke, this is the most amazing thing.
Bill Gasiamis 35:37
Now getting physical doesn’t mean that you are attending grueling events, it means that you are just becoming physically active as best as you can. If that is from your chair, and you’re doing it sitting down and seated, and you can only do chair aerobics, or whatever it’s called. And that is perfectly fine.
Bill Gasiamis 35:57
But it is really, really important to get physically active after a stroke, the more physically active that you get after a stroke, and the more you will experience the opportunity to support your brain to heal from all the challenges, physical activity just spurs off a whole bunch of amazing neuro chemicals in the body. And it can only be created when you get physically active.
Bill Gasiamis 36:23
Yes, being physically active after stroke is probably harder than it’s ever been to be physically active, I totally get it, I’ve been there. And there are some certain exercises that I will not do, because I don’t enjoy doing them anymore. And one of those is running.
Bill Gasiamis 36:41
Although I can run I will avoid running because my balance is an issue. I’m always overthinking where my leg is going to go, whether I’m going to over-extend my knee, when I’m going to do damage to myself, and it is no fun. So I found an electric bike that I used to ride. And as a result, I get some physical exercise like that. I love walking, and I can do a lot of walking. So I do that instead of running. I don’t play sports anymore.
Bill Gasiamis 37:10
Because again, that physical impact that a lot of sports have is a challenge to me, and I don’t like being hit on my left side, it’s much easier for somebody to put me off balance and knock me over. And I’m not keen on getting myself into situations that are uncomfortable and where I risk hitting myself as well as injuring my head. So getting physically active, no matter what you do, is one of the most important things that you can do after a stroke.
Bill Gasiamis 37:38
Now, I have met people that interview people on the podcast, do physical exercises, to the extent that you and I couldn’t imagine like powerlifting, one of the people that I interviewed was Kelly Studebaker on Episode 106, who is a powerlifter, who uses only one side of her body to lift the weights because of the other side has been impacted by the stroke.
Bill Gasiamis 38:02
So physical exercise doesn’t have to be that crazy. But anything you can do with the good side of your body, or with the side that’s better than the other side. Or even with the side that’s weak and needs rehabilitation, don’t neglect that.
Bill Gasiamis 38:15
Just do anything you can to start getting to the point where you’re creating resistance in your body, whether it be from walking, cycling, weightlifting, I don’t care if it’s crawling, whatever you need to do, to get physically active, get help from another person, get training, get any coaching.
Bill Gasiamis 38:38
Get anything you can, ju st get physically active as much as you can, being sedentary is only going to make matters worse, it’s going to increase your risk of stroke, and probably a second stroke, it is going to decrease your health.
Bill Gasiamis 38:51
And it is not going to be a good long-term solution. So that’s another thing that other people who are considered that they are achieving better or going well or having a good stroke recovery are doing. And they are doing that in spite of their deficits. Now, the next thing that people do to achieve a good stroke recovery is they do some kind of an internal work. So we spoke about emotional work earlier.
Bill Gasiamis 39:20
Now they do meditation, like a heartful kind of meditation, what they’re doing is going in and concentrating on doing a guided meditation, whether they download it from YouTube or Spotify or some other and they get to go in quietly, to quiet the mind and start connecting with the other parts of their body like their gut and their heart. So a meditation practice is something that really does help to decrease stress levels. Decrease cortisol, helps to decrease blood pressure.
Bill Gasiamis 39:56
So there are a whole bunch of different reasons why a meditation practice, five minutes in the morning, five minutes at lunchtime or five minutes before you go to bed is all you need to start to have a positive impact on your health and your recovery and the way that you feel and the way that the brain is being supported after a stroke. So a harmful meditation, I specifically said harmful because in those meditations, I’d like you to be able to focus on that area of you on the heart.
Bill Gasiamis 40:29
And give yourself another way to connect to your heart. So that you can go to where some of the things that trouble you and give yourself an opportunity to gently and quietly just heal and overcome things that have been with you for a little while.
Bill Gasiamis 40:45
Anything you can do to support your heart via meditation, or another method is really going to help you and believe me, coaching, counseling, which is something that I’ve done for many, many years really will support that emotional intelligence upgrade, going to a great psychologist, will help you let go of some of those things from the past and change the way you think about things.
Bill Gasiamis 41:09
And at the same time, if you’re doing meditation, it’s going to be an amazing, beautiful thing that you can do for your body and start to support it in a way that perhaps you’ve never supported before. And if you’re a man, and you’re listening to this, and you’re thinking out and do meditation, or even if you’re a lady, and you’re listening to this, and it’s not for me, it could be for you, and just be curious about it and think about it and see whether or not you’d be brave enough to go there.
What Happens When You Discover Your PurposeBill Gasiamis 41:38
Now, this is a big one, discovering your purpose is the next thing that people do. Now, it’s not that they discover their purpose immediately. And all of a sudden, they know what the purpose is, is they start working towards doing things for other people. And somehow their purpose emerges. So what happens is they go through the process of saying, “Oh, my gosh, I’ve had a stroke, this is terrible.”
Bill Gasiamis 42:05
I’ve come some way in my own recovery. And I’ve learned some things. And I’d like to share them with other people. So they come on my podcast, they volunteer somewhere, they raise funds, they do anything they can to help themselves, but also at the same time, be helpful to other stroke survivors, it helps them find new people to connect to, who understand them. And I’m going to talk about that in my next step.
Bill Gasiamis 42:32
And the next thing that happens for people who are getting to the point of saying that they’re recovering well, and they’re having a good recovery in spite of their deficits and the challenges.
Bill Gasiamis 42:42
So what happens is, when you go towards the path of doing something purposeful, where there is a purpose for what you are doing, as in I’m going to volunteer to help these people or I’m going to go on a podcast to raise awareness, or I’m going to support the local food bank, or I’m going to cook a meal and take it to somebody, when you’re doing something with purpose that’s purposeful and has a good outcome intended, then what happens is, you discover your purpose.
Bill Gasiamis 43:17
Now, that is how I came about discovering my own purpose.
Bill Gasiamis 43:21
And I had no idea that I was on the path to do so. But I wanted to help, I wanted to do something for people that are having a stroke after I had one. I’ve been down this path for more than 10 years now. And when people came along and had a stroke after me, I had some experience that I could share. And I did it in the form of a podcast. And I didn’t want to do it alone. So I recruited other stroke survivors to come and share their stories.
Bill Gasiamis 43:46
And with them, I created the Recovery After Stroke podcast. And we’ve had more than 230 episodes now, where we share information that every single day somebody contacts me and says, that was an amazing episode. Thank you so much for that I really needed to hear that. And I really love your podcast and all those things. All of those responses and all those people that have come on my podcast and all the things that have come from this podcast, made me realize that I’ve actually found my purpose.
Bill Gasiamis 44:15
My purpose has become to be the person who creates the most podcast interviews of stroke survivors, and make a database of it that’s available to anyone who has come and had a stroke before us, or somebody who’s going to have a stroke after us so that they can not be in a position where I was and blindly trying to navigate stroke. After I was released from hospital, I don’t want anybody to be in that position.
Bill Gasiamis 44:44
And my purpose in life is to make sure that this podcast continues and the coaching and the support and the courses that I put together are all going to go towards helping people overcome stroke. So that is what some people do or a lot of the people do, who talks about having a great stroke recovery and overcoming their challenges.
Bill Gasiamis 45:05
That’s what they do, they start doing things purposefully. And some of them even get to discover what their purpose is, you’re not going to work out what your purpose is in your head, your head will not do that. Do not try and think about what your purpose is. Purpose is heart related thing. And it’s why it’s important to go back and do some healing, some emotional intelligence upgrades, some healing of those challenges that have
Bill Gasiamis 45:31
hustled your heart for many, many years. That is why mindful meditation, and heartful meditation is helpful and useful. Because what we want to do is we want to get you living your life via your heart’s desires, we want to get you living your heart’s desires via this purpose that you’re going to discover that you don’t know yet that you do not have to work out, you just have to start working towards doing purposeful things for other people.
Bill Gasiamis 46:03
It doesn’t have to be full time, part time, doesn’t have to be many hours a week, it can just be once a month, that’s all that’s necessary. Even if it’s 30 minutes a month, it doesn’t matter. But as soon as you start putting other people before you, and I’m not talking about with regards to your health and your recovery, yours first when it comes to health and recovery from stroke.
Creating A Community – Bill GasiamisBill Gasiamis 46:27
But when it comes to helping people and doing something for somebody else that’s going to reward you, it’s going to make you feel great about yourself. And it’s going to make somebody else feel great about the fact that somebody is helping them. So do something purposeful, you might discover your purpose. That’s the next thing that is on the list. Now the last thing that is on the list, and this is a list of 10.
Bill Gasiamis 46:52
And it is an amazing thing that these 10 things are the things that people have in common to support them in overcoming the deficits over stroke and to have “a successful stroke recovery”, even though they still live with deficits and challenges and losses that the stroke has created, is they go about building a supportive community. And I’ve done that, how have I done that?
Bill Gasiamis 47:22
My community has been built on the podcast and brought people in and they’ve become part of my community. And I have more than 5000 followers on Instagram, and they’re part of my community. And I am part of their community. So together, we are creating a community of people, where we are able to go and learn and discuss and overcome things together. And feel like we’re not alone.
Bill Gasiamis 47:45
Now my community doesn’t only exist online, my community now also includes people on the ground. In my hometown, in Melbourne, it includes people overseas that I have caught up with. While I’ve been overseas, it includes people that I catch up with regularly or irregularly. But I have people that support me, they’re not people who are in my life, because it’s about them. They’re people that are in my life, because it’s about me.
Bill Gasiamis 48:12
And since they make it about me, I make it about them. I don’t have people in my life who drain my life, I do not allow people to come in and make it about them, and drain me of my energy so that I can put into them, and I get nothing in return from them.
Bill Gasiamis 48:28
This is a situation that is difficult for some people to deal with. When you have people in your life that are not about you. There are people in your life that are narcissistic, or have personality traits that you don’t like, that you would prefer not to deal with, as a result of becoming a stroke survivor.
Bill Gasiamis 48:49
Because you realize life is too short, you need to start slowly, just walking backwards and distancing yourself from people who are not going to be supportive of your recovery, who get in the way of your recovery. You know, some people are like bad food, they just get in the way of your recovery, they cause inflammation, they make things worse, and you do not want to be hanging around with people like that.
Bill Gasiamis 49:11
That doesn’t mean that you have to have arguments with them and break friends with them or make it difficult for them or anything like that. It just means that you have to replace the amount of time that you spend with them, that you are going to spend more time with people that fill your cup, people whose cup you feel, people where there’s a reciprocal relationship and there is mutual trust and love.
Bill Gasiamis 49:36
That is the type of people that you want to surround yourself the most with. You know, there’s a famous saying that goes that you’re the average of the five people that you spend the most time with. That is a really, really important thing to remember. Not only are you the average of the five people you spend the most time with.
Bill Gasiamis 49:54
You are also the average of the five people they spend the most time with, and the five people they spend the most time with And as a result of that, you’re being influenced negatively by negative people, if they’re hanging around with other negative people, and if they are hanging around with other negative people. So basically, if I’ve confused you, I didn’t mean it.
Bill Gasiamis 50:13
Basically, what I’m saying is the friends of your friends and their friends are also influencing you negatively. So if your friends, your five closest people that you hang out with, that you spend the most time with, negative to be around, hard to be around, not encouraging, making it about them, narcissistic or have other personality traits that are not helpful. You want to start decreasing the amount of time you spend with them.
Stroke Recovery MindsetBill Gasiamis 50:38
And you want to start increasing the amount of time you spend with amazing people that fill your cup more often. Now, that is the list. That’s the list that I’ll go back and quickly summarize. They have a recovery mindset. They have an emotional intelligence upgrade, and they go to the heart and they do some emotional work and heal traumas of the past.
Bill Gasiamis 51:01
They make use of their second brain in their gut, they support the second brain, they talk to the second brain, they follow their gut instincts, they listen to their gut, they are guided by their gut, they do things to start using the gut intelligence as a tool to guide their life going forward to take action on the heart’s desires. That’s what the gut is supposed to do. It’s supposed to help you take action.
Bill Gasiamis 51:28
So the more healthy your gut is, the less things that you’re putting into your gut and making it feel inflamed, the better your gut is going to respond and guide you and help you have great gut instincts about how to move forward. So that’s what they do. They also then use Neuroplasticity.
Bill Gasiamis 51:50
They use whether it’s physical activity or imagined activity, they make the most of Neuroplasticity that create new neural pathways in their brain to overcome the challenges that they are experiencing. And they may not be able to overcome them completely, but they do their best to overcome them as much as possible and to improve things always, always moving forwards towards improving things.
Bill Gasiamis 52:17
They sleep better, they look for ways to improve their sleep cycle and to make sure that they are getting deeper, more restful and more cleansing sleep. So they are doing that, they are making the most of their food choices and they stop consuming certain foods that I mentioned that are not good for brain health and recovery. They are not consuming food that are increasing fatigue and making fatigue worse.
Bill Gasiamis 52:47
And they are improving on eating foods that are decreasing inflammation and making fatigue less impactful. They are getting physical, some way shape or form, be it with an electric scooter, an electric bike, within a gym setting, whether they are walking or riding, whether they are doing it in their chair, just waving around their arms and waving their legs, they are getting physically active in some way, shape or form.
Bill Gasiamis 53:17
They are doing meditation, they are checking in with their body, their heart and their soul. And they are going internally and doing five minutes of meditation, I would recommend five, five and five, five minutes in the morning, five minutes in the afternoon and five minutes before bed. They are doing things purposefully and it’s helping them discover their purpose. And they are building a supportive community.
Bill Gasiamis 53:45
Now, I just gotta mention that a supportive community can also include doctors, your GP, it can also include your physical therapists, you can include a whole bunch of people that have already been involved in your stroke recovery that can continue to be involved in your stroke recovery. That supportive community can also include coaches and counselors, and psychologists and other therapists.
Bill Gasiamis 54:11
So your supportive community can be amazing. Just hanging out with supportive people more often, and let go and just slowly walk away from people who are not supportive. And I hope that what you’ll be able to do is learn a little bit from this and get to the point where you are now, thinking of some things that you haven’t thought before.
Bill Gasiamis 54:32
And this might be what leads you to some stage get to the point where you are feeling like you are at least successfully getting better and overcoming your deficits and moving through life and feel like you’re leading a fulfilling life and you’re living a life where you feel like you are once again a success, you are feeling like once again, that you are able to participate in life fully, and you’re able to be a part of your community fully.
Bill Gasiamis 55:02
And I just hope that this episode, inspired by Andy Dovey is going to be an episode that you’re going to take to heart and you’re going to listen to multiple times, I hope I’ve done a good job in speaking to you about it and letting you know my thoughts on the topic. The reason being is because these 10 things are going to be the chapters of my book, which by the way, I have just finished.
Bill Gasiamis 55:29
And in a couple of weeks, I’ll be submitting the first manuscript to my editor to start editing. And hopefully within the next six months or so there will be an actual book. But that’s why I know the answer to Andy’s question is because I interviewed people who said that stroke was the best thing that happened to them. And believe it or not, I’m one of those people. And I couldn’t believe that we had all these things in common.
Bill Gasiamis 55:56
These are the 10 things, that the people who say stroke is the best thing that happened to them have in common. And I hope that you have at least ticked off a few of these. And if you haven’t, you’ve got some idea of how to go about ticking off a few more. And then from that, maybe, just maybe in spite of all your suffering, and all your challenges and all the things that you dislike, and that stroke has done to you.
Bill Gasiamis 56:26
Hopefully, maybe one day, you might say that stroke from the perspective of a learning experience and how far you’ve grown in your life. Maybe stroke was the best thing that ever happened to you. Well, thank you for joining me on today’s episode, I hope that you got something out of it. It was pretty rapid fire. I spoke very, very quickly because there was a lot to get through and I wanted to make sure that this episode didn’t go forever.
Bill Gasiamis 56:57
But if you would like to support this podcast, the best way to do is leave a five star review. If you liked this episode, and you’re watching on YouTube, please do hit the Like, subscribe to the show. Tell your friends about it. Share this in your communities let people know about it. If you are a stroke survivor with a story to share about your experience, come and join me on the show The interviews are not scripted, you do not have to plan for them.
Bill Gasiamis 57:21
All you need to do to qualify is be a stroke survivor or care for someone who is a stroke survivor or you are one of the people who helps stroke survivors. You’re also welcome on the show. All you have to do is go to recoveryafterstroke.com/contact fill out the contact form.
Bill Gasiamis 57:38
And as soon as I receive your request, I will respond with more details on how you can be on the show how you can choose a time that works for you and me to meet over zoom. Thanks again for listening. Thanks again for being here. I really appreciate all the support. See you on the next episode.
Intro 57:54
Importantly, we present many podcast designed to give you an insight and understanding into the experiences of other individuals opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed all content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only
Intro 58:20
and is largely based on the personal experience of Bill Gasiamis, the content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives.
Intro 58:39
Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional
Intro 59:02
if you are experiencing a health emergency or think you might be called triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department medical information changes constantly. While we aim to provide current quality information in our content. We did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content.
Intro 59:26
If you choose to rely on any information within our content you do so solely at your own risk. We are careful with links we provide however third-party links from our website are followed at your own risk and we are not responsible for any information you find there.
The post A Guide To Understanding Your Stroke Recovery – Bill Gasiamis appeared first on Recovery After Stroke.
Discover the power of a holistic approach to recovery and find hope on your journey as a caregiver or stroke survivor. Tsgoyna shares her expert advice, so don’t miss this opportunity to find hope on your own recovery journey
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Hope After Stroke for Caregivers and Survivors
Highlights:
01:20 Bill’s guest introduction
04:06 Why Tsgoyna Tanzman wrote the book
16:32 What is the Nocebo effect?
20:33 What’s next now that you’re home?
30:43 What is ICU psychosis?
33:25 Preparing for homecoming after hospitalization.
40:06 The book is for caregivers and survivors
49:57 What is the penumbra? What does it mean?
1:03:30 Finding meaning in stroke recovery
1:18:24 The importance of forgiveness and acceptance in stroke recovery.
1:24:46 The stroke got me out of my head.
Tsgoyna Tanzman 0:00
You talk about the placebo effect, right? It’s fantastic. It’s like, oh, if I could take nothing and feel better, hell yes. Right? Why not? If the end goal is to feel better to do that, and we do feel better. There’s also the nocebo effect. I don’t know if you know what that is?
Bill Gasiamis 0:21
I’ve heard about it tell me.
Tsgoyna Tanzman 0:22
Yeah, well, that is where a person can feel worse because what they’re programmed to hear, I can’t tell you how many patients and you’ll know from dealing with your community, the person that says My doctor said I would never walk or talk again. And here I am, you know, and here I am walking, talking, doing all these things.
Tsgoyna Tanzman 0:46
So the nocebo effect is that limiting belief that we can internalize by a person, a well-respected person whose words are impacting us, or limiting our own ability to achieve.
Intro 1:07
This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.
Bill’s guest introduction – Tsgoyna Tanzman
Bill Gasiamis 1:20
Hello, and welcome once again to the recovery after stroke podcast. This is episode 236. And my guest today is Tsgoyna Tanzman the author of the highly successful book Hope After Stroke For Caregivers And Survivors: The Holistic Guide To Getting Your Life Back.
Bill Gasiamis 1:37
Her engaging and moving stories have also been featured in 15 Different Chicken Soup for the Soul anthologies. She’s also a contributor to thrive global and writes about mental health for I love recovery cafe, the largest online addiction recovery site, Tsgoyna Tanzman, welcome to the podcast.
Tsgoyna Tanzman 1:59
Thank you. It’s great to be here.
Bill Gasiamis 2:01
My pleasure. It’s great to be awake. Instead of slept through our last appointment like I did.
Tsgoyna Tanzman 2:08
Well, you come by it. Honestly, it’s very early where you are. It’s a whole other day where I am.
Bill Gasiamis 2:14
You know, when you’re having one of those beautiful sleeps, and you get to the other side of it. And then when you wake up you go, Oh my gosh, I think I’ve missed something. And then it was about five emails from you going, are you okay? Is everything okay? Are you there? Where are you? And I thought, oh, no, I’ve done the wrong thing I’ve slept through. It’s the first time I’ve slept through a podcast in 235 podcasts. So you’re the lucky first.
Tsgoyna Tanzman 2:42
Well, I’m so glad I was your first Bill.
Bill Gasiamis 2:47
That’s hilarious. Hey, thank you so much for reaching out and letting me know firstly about your book, which we’re going to talk about, Hope After Stroke. But first, tell me a little bit about you.
Tsgoyna Tanzman 2:58
Yeah, so I’m a speech-language pathologist and a life coach. And I’ve worked with stroke survivors and those with traumatic brain injury for well over 30 years at this point now. And, you know, I live in California. And I’ve had the opportunity though, because I have lived in various places in the country in the United States.
Tsgoyna Tanzman 3:26
I’ve lived in New York, I’ve lived in Florida, I’ve lived in Washington State, and California. And wherever I go I see people who are recovering from stroke, recovering from brain injury, and it doesn’t matter where you live. So many of the same questions came up so many of the same concerns. And most importantly, for me, as a speech-language pathologist, but always working in that coaching sort of aspect of it, because quite honestly, your mindset is the most important thing for recovery.
Why Tsgoyna Tanzman wrote the book Hope After Stroke
Tsgoyna Tanzman 4:06
And I really wrote this book because I wanted people to feel empowered. I wanted them to take ownership, and I wanted them to feel smart. So that’s kind of why I wrote the book. I you know, I guess I had gotten to a place in my life. I was just turning 60. And my mother died at 64. My father died at 68. And there was a part of me that said, What am I leaving behind? What can I really leave behind?
Tsgoyna Tanzman 4:41
I would drive around and I’d see buildings built and I could say, well, those people can say I built that it’s here, right? And writing was a skill of mine. I’ve always been able to write. I’ve had a bunch of funny stories and humorous things published in Chicken Soup for the Soul.
Tsgoyna Tanzman 5:00
But what Like, what can I leave, and I got this download in a meditation really, which was to write the book, and I went, Okay, but I’m writing the book I want to write, and that is the holistic guide to getting your life back. And it’s going to be different. And it’s going to be kind of a challenge to people, maybe in my academic community, that I could utter the word holistic, right, as as if that wasn’t scientific enough. So that’s what I decided and I did.
Bill Gasiamis 5:33
That’s a good one, that’s a great thing to decide. So you became a speech language pathologist? Have you been touched by somebody who’s had a stroke in your family personally, that made you go down that path? Or was it just an area of passion or an area of interest that you followed?
Tsgoyna Tanzman 5:53
Yeah, it was actually, because my grandmother did have a stroke. And it was just at the time, where I was starting college, and really not knowing, you know, what I wanted to major in or what I wanted to do. And my mother said, why don’t you take a look and see what this speech therapist is doing with your grandmother, you’re always been interested in communication, you’ve always been interested in speaking with people.
Tsgoyna Tanzman 6:20
And, you know, from the time I was a little girl, I thought I wanted to work in an orphanage and help little kids. And the more I looked at what this speech therapist was doing with my grandmother, I got curious about the topic, the interest, the field. And the more I studied, the more I liked, and it all sort of snowballed from there.
Bill Gasiamis 6:44
Yeah, a lot of people you hear who have been touched by stroke, as a caregiver or a family member, or somebody who’s not had a stroke, do get really encouraged and enthusiastic about helping other people have been through similar thing.
Bill Gasiamis 6:58
And I’m on the same you, you kind of go through that process. I’ve learned a bit, I know a few things, I could pass that down to the next lot of people who are coming through, unfortunately, and who are feeling like they’re in the wilderness at the moment, and it’s something that I experienced, for sure. And then it was, Who do I reach out to to get that information.
Bill Gasiamis 7:21
So I reached out to wherever I could, but when I started on my journey, it was 2012. And it was, in a time where there wasn’t a lot of online resources, there wasn’t a lot of online communities. And the ones that were there were clunky, and not really well run and weren’t run all the time, because the people that were running them were stroke survivors. So they’re all unwell, and they’re all trying to stay on their feet.
Bill Gasiamis 7:47
And there were some books that you could pick up and read, but there just wasn’t a proliferation of different types of books so that you could have a few different ways to approach this, you had a very clinical one way approach. And I think that a lot of information that I missed out on was getting what I thought was, and where I thought I needed to get it from was from the hospital saying to me, Okay, now that you’re gone home, you’re going to do these things, and it’s like, I got none of that information.
Bill Gasiamis 8:19
It was we fixed you up, we patched it up, go home, see you later at the next appointment. And that was a bit of a shock. When I think about that, and when I hear other stroke survivors talk about that, I know that that’s not their role. Their role is not to educate us about what we’re going to do when we get home. That’s become our responsibility.
Bill Gasiamis 8:41
And it’s a big responsibility, because I’ve got to do that when I’m recovering from stroke and dealing with fatigue and not able to work and not able to walk and move my hand and sometimes not able to talk and it’s ridiculous that it’s my responsibility to teach myself how to get better. After all the things that I need to get better, that are necessary after I go home from the hospital. And it was such a struggle.
Bill Gasiamis 9:15
And that’s what a lot of people complain about right now, a lot of stroke survivors who I’ve talked to on my Instagram page, that’s what they complain about. So we do look for other people to give us guidance. And your book is called Hope After Stroke. We will talk about it in a little while Hope After Stroke For Caregivers and Survivors.
Bill Gasiamis 9:37
The holistic guide to getting your life back, so holistic is one of those words overused by a lot of people, throw it around. I potentially, well, I don’t overuse, but I use it. And for me, holistic is a really important approach to stroke recovery. What does it mean for you to approach recovery in a holistic manner, what does that mean?
Tsgoyna Tanzman 10:03
Yeah, totally means to me that there is a whole human being here. So as a speech therapist working in the hospitals, we have this very convenient way of vivisecting a person, right, the speech therapists worked from the neck up, the occupational therapist worked from the neck to the hips, and the physical therapist worked from the hips down. And of course, we would meet as a group and we would integrate kinds of things.
Tsgoyna Tanzman 10:34
But there was still this overall lack of understanding that we have this whole human being here, right? With a whole life, that they came to us with a whole life, with relationships with spouses, with children, with work environment, with friends, with dreams, with goals, and because it was just so myopic, this approach that we take in the hospital and making sure everybody has stays within their own lane.
Tsgoyna Tanzman 11:14
I think the person behind all of that is the person that suffered. And it was very difficult to integrate all those things. So that’s one aspect of holistic for me, the other aspect of holistic for me, and by the way, I got a lot of pushback from people that said, maybe you don’t want to use that word, holistic, that’s a dicey word to use. That’s like, a scary thing.
Tsgoyna Tanzman 11:43
You know, like your academic, you know, the people in the medical field are gonna, like, maybe not so as all whoo, whoo, and, you know, chickens being swung over your head? Well, you know, even things like acupuncture, which is considered in our country alternative care, well, that’s the standard of care that takes place in China, right, that they do surgeries, they do brain surgeries using acupuncture.
Tsgoyna Tanzman 12:12
And if you speak to people in the stroke community, and you look at a variety of different therapeutic approaches to managing problems, you’re going to see a wide variety. I wanted people to see what other types of approaches, it’s not just like there’s one and done.
Tsgoyna Tanzman 12:37
And if that doesn’t work for you, sorry, good luck, you know, you’re on your own. So holistic to me, meant really being exposed to what other therapeutic approaches are using, what self care tools can we use, that really was a part of the whole process of recovery,
Bill Gasiamis 13:02
For an intelligent, medical community, a really intelligent medical community, they really miss that thing, where they’re not the “be all end all.” I wouldn’t be alive without surgeons, but I would not expect my surgeon to tell me that I shouldn’t be going to see an acupuncturist. It is non invasive. It doesn’t mean you have to swallow anything or do anything, all you’ve got to do is go and attend and lie there.
Bill Gasiamis 13:31
And perhaps just the fact that they put you in a state of calm, safety, relaxed, decreases your blood pressure, decreases your stress hormone, decreases all those things, and maybe the two pins that they put in there, reroute something. And maybe they do that too, why not, even if they don’t reroute something with the two needles that they put in your leg and one in your head, or whatever they do, it doesn’t really matter.
Bill Gasiamis 13:57
What really matters is that when you go there, and you leave some money down, that you leave feeling better and feeling different, even if it’s a placebo, even if it doesn’t work, even if it’s not real. It doesn’t matter. What matters is that I go there and I have the experience.
Bill Gasiamis 14:11
I went to Reiki, I went to acupuncture, I went to massage, I went to you name it, everything that you can possibly imagine after my brain surgery, and before I went to because I wanted to know for myself whether or not it was beneficial or not. And some things were less beneficial than others.
Bill Gasiamis 14:32
So I didn’t go to them anymore. And the person offering that service is potentially somebody who is doing good for other people, and I’m just not one of them. So who am I to judge, but I did get some right if experiences with acupuncture, I really did find that acupuncture did make a difference.
Bill Gasiamis 14:57
And I had this amazing Reiki practitioner who I went to, who I would go and do an hour session with every so often, and I would just walk out there, out of there feeling just like a completely different person, I have no idea what she did, how she did it, I don’t understand Reiki, all I know is that when I walk in there, I feel different to when I leave. And that is just an amazing thing to be able to offer me, this feeling of lightness, and calmness.
Bill Gasiamis 15:32
And without a raising head and things that just, you know, processing better or working better, I still walk out with the deficits that I’m always going to have my entire life and I’m always going to have my left sided numbness, I’m always going to have some balance issues, I’m always going to have tingling in my arms, I’m always going to be sensitive to hot and cold. But when I walk out of Reiki, it all seems to just go away for a little while. And that is such a blessing.
Tsgoyna Tanzman 16:03
It’s a remarkable thing you’ve moved energy in your body. And you’re right, you know, when we can decrease our stress response, we put our body and our cells in the most optimal condition for healing, for optimizing our body systems for creating resilience within our body because our body does want to heal itself, and to recalibrate itself.
What is the Nocebo effect?Tsgoyna Tanzman 16:32
And the more we can put our body in that ability to do that. It is a wonderful thing. You know, you talk about the placebo effect, right? It’s fantastic. It’s like, oh, if I could take nothing and feel better, hell yes. But wait, why not? If the end goal is to feel better to do that, and we do feel better? There’s also the nocebo effect. I don’t know if you know what that is.
Bill Gasiamis 17:00
I’ve heard about it, tell me.
Tsgoyna Tanzman 17:01
Yeah, well, that is where a person can feel worse, because what they’re programmed to hear. So very often when we have, you know, and like you said, you needed those surgeons to do the surgery. Absolutely. We need our medical profession. Everybody offers a fantastic ability to do what they’re best at.
Tsgoyna Tanzman 17:27
But for example, I can’t tell you how many patients and you’ll know from dealing with your community, the person that says My doctor said I would never walk or talk again. And here I am, you know, and here I am walking, talking, doing all these things. So the nocebo effect is that limiting belief that we can internalize by a person, a well respected person whose words are impacting us, or limiting our own ability to achieve.
Intro 18:02
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, and doctors will explain things. But obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 18:26
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke.
Intro 18:50
They’ll not only help you better understand your condition, and they’ll help you take a more active role in your recovery. Head to the website now, recoveryafterstroke.com and download the guide. It’s free.
Bill Gasiamis 19:08
Yeah, I love your approach. It’s so needed, and there’s not enough of it. And the thing about the medical community, the only thing that I have an issue with is that there’s not enough people who are open to at least if not suggesting alternative therapies as part of a approach to supporting what they’ve done the work that they’ve done, like we’ve done our part now, just go and see if there’s somebody else that can help you with another little part.
Bill Gasiamis 19:46
That’s probably my biggest issue, the lack of willingness to kind of say go and have a look. And they’ll use the excuse that I don’t have any evidence for that or I don’t have the time to look into that etc. Well I think they should they should have time to look into that.
Bill Gasiamis 20:01
And they should have time to be able to gently just make suggestions generally about things that other people have done, that have had some support, that have had some positive experiences and just go, look, it’s not my thing. I don’t do that. You know what I do open heads, I do that type of stuff. But there’s other people that help with other things. Just go and seek them out and see who they are. And just be careful, you don’t find the wrong one and give money to people who promise things and offer things that are certainly not possible, you know.
What’s next now that you’re home?
Tsgoyna Tanzman 20:33
And I think that there’s probably they feel a responsibility that a person does not just go for any kind of crazy thing. But there’s a big gap between dismissing the possibility that there are other things, and that people have gotten better, and that it’s important to explore, I think the biggest challenge is when they say, it’s as good as it gets, right now you’re at six months post-stroke, that’s as good as it gets.
Tsgoyna Tanzman 21:11
And we know that’s not true. We just know that from 1000s and 1000s. of people. And that’s the place where, in their desire to protect people, they can also limit people. And you know, you brought up an interesting thing, Bill, when you talked about, you know, once you let go of the hospital, you’re kind of in this wilderness really.
Tsgoyna Tanzman 21:39
And that is one of the reasons why I wrote this book is like, what happened now that was like life in the hospital? What now that you’re home? And what’s next, now that that level of care, even once you’re home, where maybe you’ve got home health care, people coming in, and therapists coming in? That eventually leaves and then what now? Right? Like, what’s the next phase for you? Because life is therapy, then?
Bill Gasiamis 22:13
Yeah, every single day can be therapy every single day has to be therapy. Because you’ve got a massive mountain to climb, you’ve got a hill, that’s so big, that can be overwhelming. Because if you’re looking at the top of the hill, and you’re trying to work out, what are all the obstacles that aren’t going to come across to get there, you are going to be overwhelmed.
Bill Gasiamis 22:34
And this is the thing about these little offerings, there’s beautiful offerings, that Reiki give that acupuncture, give that all these different things give is I think what they do for me, what they did for me is they give me the next step, even though if it’s not the entire journey, and if that next step is showing me that it is possible to calm my nerves, it is possible to feel great for a little while it is possible to get out of my head.
Bill Gasiamis 23:06
Then that is something that is a great thing to teach me because what I need to do then is go okay, if I’ve done it once, and say I don’t want to do it with a Reiki person again, but how can I do that again, on my own? Where can I do that? It’s going to cost me nothing. Maybe there’s a YouTube video I can download where somebody is going to guide me in a five minute meditation where I can get out of my head. And that’s what those things did for me.
Bill Gasiamis 23:34
They created curiosity about where else, I can go and experience that thing. But do it on my own so that I don’t have to travel an hour to get there an hour to get home. And so that I can become self sufficient at some point. But then also, if I can’t get myself over the line, what I can do is go Hey, Deb, my amazing Reiki practitioner. Can I come and see you? And then she says yes, come and see me. And I’m like, great.
Bill Gasiamis 24:04
Thanks for that you gave me another beautiful gift that hits a head start another path that I can go down and begin my journey again, because it’s not about doing it alone. Clearly, we cannot do this alone you know, we can’t do this alone or we can’t rely sometimes. It’s not sometimes a lot of the times on our loved ones at home because they’ve never been through stroke with us. They’ve got no idea how to do it. And we don’t listen to our loved ones anyway.
Tsgoyna Tanzman 24:37
Right? It’s like being taught to drive from the person that you love most are taught to play golf. Both are not so recommended.
Bill Gasiamis 24:44
It’s not gonna happen. So I want to encourage people about that thing that you said. Where we’re lacking people, the doctors don’t do that they don’t encourage and I’ve spoken about it. I had an amazing interview. For world stroke day, 2022, last year with a guy called Dr. J Mocco. And he was part of the world stroke organization amongst other things. He’s just an amazing guy. He’s a surgeon, he’s a neurologist.
Bill Gasiamis 25:17
He’s a researcher, he does amazing things. And just a couple of days ago, I posted a clip from the video that we did the interview that we did, where he’s just encouraging people that you can recover after one year, two years, three years, you can still get back little bits of movement or something that you lost because of stroke.
Bill Gasiamis 25:41
There’s a lot of reasons why recovery continues to happen and is just going on for about a minute as to why that is the case. So for anyone listening, and watching, you can just go watch episode 222. And listen to that, because that is the most encouraging doctor I’ve ever come across in my life. And I’ve come across some amazing ones. But he’s next level amazing.
Bill Gasiamis 26:04
So hopefully what that does is gives us a bit of a head start into now sort of moving in towards and talking about your book, because I open the first couple of pages and automatically I got stopped. And I’ll tell you where I got stopped. I got stopped when you mentioned the name Peter G. Levine.
Bill Gasiamis 26:25
Can you please tell me how you knew Peter? Because I interviewed Peter for episode 135. And Peter is an amazing guy. And I know that he’s passed away. And I was so shocked. And I couldn’t believe it. Can you tell me a little bit about Peter and how you got to know him.
Tsgoyna Tanzman 26:45
I got to know him through email because I read his book, of course, and found it to be incredible. And I knew that I studied his work I knew where he got his training. And I was really very fascinated to speak with him. So I emailed him, I never met him personally. But we had a very lively back-and-forth email correspondence. And it’s really interesting because I shared something with him.
Tsgoyna Tanzman 27:16
And he was pretty emphatic about making sure that I labeled it Levine’s stages of recovery. And I was happy to do that. I was really, really happy to do that. I felt like we had a great spirit of connection, and professionalism. But that was friendly and useful to further this idea of helping patients.
Tsgoyna Tanzman 27:51
And I too, was utterly shocked to hear on another podcast that he had passed. And quite honestly, I looked to find out any information. And I really couldn’t find any information. He was a phenomenal researcher, very dedicated to the field. And his work is long lasting in this community.
Bill Gasiamis 28:17
Yeah, I think he passed from ALS, or motor neuron disease. And it seemed to be very quick, very rapid. It wasn’t that long after I interviewed him that he passed away and somebody on the video on my YouTube channel where I’ve got the interview with Peter.
Bill Gasiamis 28:38
Somebody said, Do you know that Peter Levine passed away? I was stunned. I didn’t know. So it’s great that we have that common connection I really love that. Now, tell me about the structure of your book. How is your book structured?
Tsgoyna Tanzman 28:59
Well, I decided that I wanted people to have sort of a roadmap so to speak. Because like you said, you get to the hospital right? That’s the first place everybody ends up is in the hospital. And that’s like, Oh, my God, what happened? I mean, I tried to keep it very simple. Because I’m a really simple person. I wanted it very straightforward. And the first question I thought I would have is like, Oh, my God, what happened?
Tsgoyna Tanzman 29:30
And so the first part of the book is literally what happened? It talks about in, you know, as simplistic terms as possible, not because anybody’s dumb, but because anybody that’s trying to read this right now is probably in an overwhelmed state. The good news is that you seem to be in such a readiness period to consume the information because it’s so important and so relevant to you.
Tsgoyna Tanzman 29:59
So The learning curve is like, fantastic, you’re going to absorb that really quickly. I wanted people to have the facility of communication with their practitioners, with any of the hospital personnel so that when they’re throwing all these medical jargon terms at them, that they are really understanding what that is.
Tsgoyna Tanzman 30:20
So that first part is just really kind of generally explaining what happened, you know, the difference between a block and a bleed in terms of a stroke, but also all the acronyms that we just so easily throw around the OT, the ST, the SLP, the physiatrist, that goes like, what are you talking about? Right?
What is ICU psychosis? – Tsgoyna TanzmanTsgoyna Tanzman 30:43
So, given all the terms of who are the people on your team, typical things that happen in the hospital, in ICU, what to be on the lookout for in terms of ICU psychosis? I mean, that is a scary thing for people, and sometimes can be just knowing that in advance, somebody’s prepared for that somebody can have a dialogue with their doctor with their nurse.
Bill Gasiamis 31:15
What is that?
Unknown Speaker 31:16
What is ICU psychosis? So very common thing that happens when a patient is in ICU. And it can happen for a couple of reasons. What it looks like, is a person who is physically aggressive, combative, defiant, is ripping out their tube, pulling things out of their nose. And it can happen for a variety of reasons, right? The brain is, in a hypersensitive state, people are terrified. Now, you put them in an ICU thing where they’re separated from any familiar face.
Tsgoyna Tanzman 31:53
If they’re having any kind of speech impairment, they can’t communicate, so they don’t know what’s happening. It’s exacerbating their fear response, their stress response, then you’ve got all the noises from all the machines, the disorientation of time and place. Frequently, there are no windows in an ICU unit. So there is no access to understanding day from night.
Tsgoyna Tanzman 32:23
It’s very confusing all of this, and it’s very upsetting to the family to see a loved one in restraints, that is, you know, like, why are they doing that? Well, they’re trying to keep them from pulling out these tubes, because that person just is not aware of what it is they just feel like things that are annoying them. So it’s a natural response. So helping to understand why that can happen. It can even happen from dehydration, right?
Tsgoyna Tanzman 32:55
That’s causing a urinary tract infection, which is causing a very different, almost stroke like response that’s going on. So that’s one thing that can occur. But then the next part of that is, like you said, once they are, you know, released from the hospital, typically within about seven to 10 days. I don’t know what it’s like, how long were you hospitalized for you went in for a surgical procedure, right?
Preparing for homecoming after hospitalizationBill Gasiamis 33:25
Yeah, first time I was in hospital for seven days. That was the first bleed, February 2012. Then the second time, march 2012. I was in there for about three or four days. And then I had brain surgery. And then I was in hospital from the 25th of November in 2014 to a couple of days before Christmas.
Bill Gasiamis 33:53
So around the 23rd of December. So the first few days we’re in ICU in acute care, and all that type of thing. And then after that it was in rehabilitation. So it took about after brain surgery about four days to get to the rehabilitation hospital. And then I was there all up. My entire stay in hospital was about a month.
Tsgoyna Tanzman 34:16
Yeah. And everybody’s course is going to be somewhat different. Sometimes they’ll release somebody and they’ll say, Well, you can be treated in an outpatient setting. Sometimes they’ll go to a skilled nursing facility, if they’re not even ready for rehab, but they still have acute nursing concerns.
Tsgoyna Tanzman 34:38
But at some point when people are released from the hospital, that next phase of what’s next is all about the homecoming really like preparing for homecoming one of the things that I would see with patients, you know, we all have this belief there is better than here, wherever I am.
Tsgoyna Tanzman 34:57
There’s got to be a better there right And so people would say, as soon as I get home from the hospital, it’s like, it’s gonna be great, it’s gonna be great. And it’s not all of a sudden, coming home has its own set of challenges, I see you laughing.
Bill Gasiamis 35:15
It sure does. Falling over, not being able to get to the toilet quickly enough, not being able to get up the stairs. Now, they do in Australia, at least do some preliminary work to ensure that your home is safe, the occupational therapists do that, to ensure you’re going to be able to get into your house and into your bed and all that type of thing. So there’s a bit of work that goes into it.
Bill Gasiamis 35:40
But still, nobody tells you about your specific way that you’re going to trip over. So for me, sitting at the couch, eating some breakfast with a plate in my hand, and then deciding like normal to just get up and walk and take the plate to the kitchen. And not realizing that my leg doesn’t work the way that it used to before all of this saga. So I get up and instantly, my leg just collapses and I fall over and I end up on the ground.
Bill Gasiamis 36:12
I think I didn’t break the plate, I think I managed to save the plate. But smashed my hip and smashed my ribs. And then was in pain from the impact of the fall to make matters worse, so yeah, so there’s a little bit of a discussion about what I can expect at home. And then I’m on my own when that happens. So it’s emotional, so it’s scary.
Bill Gasiamis 36:40
And then you don’t want to tell your loved ones that you fell over because then they’re worried because they’re not going to be with you all the time. Because by that stage, my wife had to go back to work. So it’s a real big challenge getting home was the place I wanted to be.
Bill Gasiamis 36:57
And then it was the most at one stage it was the scariest place to be because of the uncertainty of what was to come while I was there. But it was good to be around in familiar surroundings, that was definitely good.
Tsgoyna Tanzman 37:19
Yeah, and it is there’s great things about it, and really some scary and uncertain things about it. And despite going in and doing a home assessment, they’re not going to be able to get every, you know, concern taken care of and every situation taken care of. And, you know, we of course we try as best as possible to prevent a complication like yours. And most of the accidents occur in a bathroom. Those are typically where most of the really bad injuries can occur.
Tsgoyna Tanzman 37:56
A slip or a fall in a bathroom on a hard surface can end in another head injury, which is the last thing we want to have happen. But even just the routines of being at home. And like you mentioned, your wife went back to work right we’ve got to sort of create the ways in which you have support systems in place for you for safety, in the event that you’re home by yourself, even exiting the house, in terms of a fire or all those safety awareness things that we often just don’t think about.
Tsgoyna Tanzman 38:36
And so that was the second part of this book. And you know, even a caregivers guide I really address in that second part of that homecoming you know the caregivers guide to rewarding routines and understanding why a routine for anybody conserves really important brain real estate, like if we do things on an automatic basis, we don’t have to decide and we decide all over again. So creating structure to a day. Facility facilitates growth in other ways.
Tsgoyna Tanzman 39:16
And as you recover, you know better than I there are certain activities that require more cognitive demand, and certain activities that require more physical demand. And, you know, if you have to make a phone call or if you have to manage some aspect of your business, you’re going to need to have padded time on either side to recover and reboot.
Tsgoyna Tanzman 39:42
Because you’re not up to the same level of complicated cognitive function that you were prior to being hospitalized prior to having the surgery as part of your recovery. It doesn’t mean that you can’t get there. But you’ve got to really conserve and utilize your energy in a really appropriate way.
The book is for caregivers and survivors
Bill Gasiamis 40:06
I’m going to make a suggestion, I love the fact that you actually have said that the book is for caregivers and survivors, it really sounds like it’s for caregivers first, because you’re talking about the things that my wife was asking that nobody had answers for, you’re talking about the stuff that I couldn’t help her with.
Bill Gasiamis 40:27
And that she had to just what do we do now? And it’s a whole bunch of what we do now is we’re coming, and we were like, I don’t know, we just had to work it out and guess and make mistakes of the rest of it. And if you’re somebody who’s listening to this, and you’re a stroke survivor, and you’re curious about the book.
Bill Gasiamis 40:49
Check it out as a potential gift that you could give to one of your caregivers, somebody who needs to know what the hell is going on, and how to manage this and tackle this journey, because this is where my wife lacked information, I lacked my own certain types of information. And then my wife left a whole bunch of her own information, and it would have made a big difference, I think if she had somebody guiding her like this in this way, so this the sense that I get from it.
Tsgoyna Tanzman 41:24
It’s so funny, you should mention that too. Because when I was writing this, and I said, the caregivers guide to, you know, the holistic guide for caregivers and survivors. And again, I have a lot of feedback. Well, who is it for? Is it for the caregivers or for the survivor? And I kept saying, it has to be for both. Because even if you live by yourself, now you’re both your caregiver and your survivor. Yeah. But it’s it’s kind of like a dance at the beginning. The caregiver is leading more.
Tsgoyna Tanzman 41:57
But that caregiver eventually, we hope, anyway, that the survivor is taking more and more responsibility, more and more action towards his or her own recovery. But in the beginning, yes, you are relying on a caregiver and in the book, I answer a lot of the most common questions like why is my loved one behaving so erratically? Why don’t they trust me? Why do they sound like they’re drunk? Why are they crying all the time? Why are they… right? You’re laughing. Do these sound familiar?
Bill Gasiamis 42:34
Oh, my gosh, every one of them tick, tick, tick, tick, tick. It’s so ridiculous. I was really angry at one point, and I used to really lash out of my wife, then I would be very emotional and cry a lot. And there’s a lot of what the hell’s going on here. And then I’d be, you know, a different level of ridiculous, and then she would just be trying to work it all out. And she had no idea. No idea.
Bill Gasiamis 42:59
And we found out eventually, but it took sometimes months and years to find out that there is such a thing as the pseudobulbar affect, and some people will laugh uncontrollably at a funeral from now on. Other people will cry when they see the kitty cat trip over or something. And I say, oh my gosh, how do you navigate it?
Bill Gasiamis 43:21
We didn’t we just accepted it as being how I am now. And without explanation. It’s because of the stroke. We don’t know why there isn’t a label. There’s not a word to it, but you know, whatever. And then all of a sudden, six months down the track. Someone goes Oh, yeah, I used to do that. i It’s called this. Oh, I wish I knew earlier, but I’m glad to know now.
Tsgoyna Tanzman 43:47
Yes, absolutely. Like, and so being able to look at those and go okay, all right. There’s this feeling of like such aloneness, such powerlessness that I think people have in not knowing and you can’t possibly know what questions to ask.
Bill Gasiamis 44:08
Yeah. You don’t know, what you don’t know.
Tsgoyna Tanzman 44:10
Yeah, exactly. Like I know when I go to talk to a web designer about doing a web thing. I look there and my mouth is open. Because I don’t even know the questions to ask
Bill Gasiamis 44:21
You know a web designer, you tell me.
Tsgoyna Tanzman 44:24
Like what am I supposed? I don’t even know what I don’t know. Right. And so that’s definitely part of why I put those in there. And you know, I will talk about in the homecoming thing, this is one area I thought that nobody ever addressed. I will say that there’s a lot more holistic stuff coming around now. But I will say that nobody talked about sex. Nobody talked to the people who had had strokes and said anything about sex?
Tsgoyna Tanzman 45:02
Absolutely not. And there are tons. It’s like, okay, you are still a human being, you are going to have sex or want to have sex, or maybe you don’t want to have sex. But if you do want to have sex, you’re probably thinking like, oh my god, is this safe? Am I gonna have a stroke having sex? You know, like, all these questions that nobody ever wanted to address.
Bill Gasiamis 45:27
Let’s talk about sex.
Tsgoyna Tanzman 45:31
Got a chapter in there called Let’s get physical. Yep, I’m talking about sex.
Bill Gasiamis 45:35
Awesome. Absolutely love it. Now, I’ll tell you why I want to talk about sex. Because when I was in my very first appointments with all my doctors, and then they sent me home after the first seven days, of course, the first question, one of the first questions asked was, am I going to be able to have sex, and they told me to refrain from everything. And sex was on the refrain list, because I had a active bleed and a blood vessel that was potentially going to bleed again.
Bill Gasiamis 46:08
And they didn’t know why it bled, and they couldn’t get exactly worked out what the issue was, because there was, the blood clot was interfering with the MRI, so you couldn’t see the cause on the bleed. They said, No sex. So my wife kind of rolled her eyes. And she kind of thought, well, of course, the only thing after a bleed in the brain, he’s going to be asking about whether he can have sex or not, right. Now as a stroke survivor, who knows that that’s a sensitive issue.
Bill Gasiamis 46:43
I haven’t been able to get anybody on the podcast to talk about that. Not with their own experience about the lack of intimacy, after stroke, or the challenges with intimacy, I haven’t been able to get to that point. If anyone’s listening and wants to come on the podcast to talk about that. Please reach out, go to recoveryafterstroke.com/contact, fill out the contact form. Tell me you want to talk about sex. And I’ll have you on the podcast.
Bill Gasiamis 47:12
So it’s kind of still taboo. But I do feel like it’s taboo from a stroke survivors perspective, because maybe it’s embarrassing, or maybe it’s difficult for the caregivers to hear their partner talk about or for their loved one or their wife or husband to hear about them talk about the lack of sex perhaps, or all the things that are associated with it. I’ve never come across anyone who’s spoken about it. So I’m glad that you’re doing that.
Tsgoyna Tanzman 47:47
Yeah. And I’m certainly not the expert in it. But I did reach out to some experts, and got some great information. One of them came from Mitchell Tepper, who is a spinal cord injury survivor. And he gave me really the most information that I thought was really, really useful. That could be applied, but then I did a lot of other research around that. But I think it’s still an area like you say, that really needs to have some frank conversations.
Tsgoyna Tanzman 48:26
Because it is a source of emotional concern for a lot of people, and shame, and embarrassment and frustration. And these are all part of it. And there’s, you know, from both parts from the from each partner has their own different perspective. But they’re all part of your whole emotional mental well being.
Tsgoyna Tanzman 48:53
And that’s why I think it is so important to really at least peel back the layers and begin to have some conversations with your caregivers and ask some of those questions. So good for you for being able to ask that straightforward, right. A lot of people might want to but be afraid to and, you know, one thing I found that was fascinating, the literature was that actually having an orgasm, only elevates your heart rate to about the level of climbing stairs.
Tsgoyna Tanzman 49:28
And I thought, Oh, well, that’s interesting. Right. And there were some other research in there that was funny about sneezing and drinking coffee and, and how those can, you know, potentially what the risk factors are associated with that compared to having sex. And I think in my book, I went okay, well, I think I’d skip coffee, and have sex. That was my takeaway.
What is the penumbra? What does it mean? – Tsgoyna TanzmanBill Gasiamis 49:57
I could go without coffee any day and I’ll leave the next part up to you to think about. I love it. So yeah, that’s a great thing that it’s in there. I’ve highlighted a few other things now. Tell me, so part of, I’m going to set it up before I tell you to talk about this. But I’m going to set it up first for the people listening and watching, which is part of the reason why recovery happens. Two, three, a little while later, whatever you want to call it years later.
Bill Gasiamis 50:34
Part of the reason that happens is because of this thing called the penumbra. And it’s not very widely known or spoken about, and I didn’t hear about it from my doctors. I heard about it online somewhere. And then I did some research into it.
Bill Gasiamis 50:51
And I found out what the amazing Penumbra is that what they’re thinking about the preliminaries and the fact that a lot of people won’t be able to access the brain cells in the penumbra until a little while later, until certain conditions change to allow those brain cells and allow those neuronal connections to come back to life.
Bill Gasiamis 51:13
So can you just give people a bit of a guide as to what the Penumbra is? And why it’s important to know? And how that then supports getting some things back some? What do we call it? Some? I don’t know what to call it. You tell them about the penumbra.
Tsgoyna Tanzman 51:35
Some connectivity, right, some connectivity? So like, if you imagine kind of what a bullseye looks like a target, you know, outer rings, and then inner rings. Typically where the stroke has occurred, right, there’s a core that center point, but all surrounding that. And I think of it like this, again, I like to think of analogies when, you know, if you imagine that there’s an accident on the freeway, we call them freeways here, I don’t know what you call them there.
Tsgoyna Tanzman 52:12
So there’s a point where the cars crash, right, that’s like the area of insult. But there might be debris in a wide scattered area around that, that is still problematic. And when the you know, when for the people that are on the freeway, well, traffic comes to a halt, right, everything comes to a halt, and then they might reroute you off of that freeway.
Tsgoyna Tanzman 52:39
So you’re going around it, and that’s kind of like the slow pathways in your brains of, you know, you can get to an endpoint, but it’s going to take longer, and it’s going to be slower. Well, The Penumbra is that area where all the other debris is. And it’s not the actual area of insult, but there’s a lot of toxic almost like a toxic soup, as your body is trying to recover. And until that area really clears.
Tsgoyna Tanzman 53:10
It’s kind of like they’re stunned, the cells are stunned, they’re not dead, but they’re stunned. And it takes a bit of time for that recovery to occur for, you know, the good aspects of inflammation, right, all the things that are trying to help your body recover is still kind of toxic. And it’s that area where the cells are stunned, but they’re not dead.
Tsgoyna Tanzman 53:38
So they’re coming back on line. Again, if we were trying to use an analogy, if you’ve ever dropped your phone in the toilet, I’ve been there. You don’t want to do that. But then you rush to put it in the rice to let it dry up, right? And the connectivities. Like, oh, it’s starting to glimmer, it’s starting to show up a little bit. It requires a period of time for the cells in your brain to get back on line.
Tsgoyna Tanzman 54:08
And so there is recovery, there is neurogenesis, new neurons are building their grow growing. But it does take time for that to happen. So yes, recovery can take place, we typically see recovery, the most amount of spontaneous recovery, we see is in that first three month period, it slows down a little bit to six months. And that’s where very often the doctors will say, six months, it’s as good as it gets. And that’s just not true. It’s just not true.
Bill Gasiamis 54:47
I love the analogy of the bullseye because it’s like the dartboard you know, it’s everyone’s going for the center. They’re trying to hit the center so it’s often on the dartboard, it’s where the most dots are, it’s where the most holes are from the darts that have hit there, right. So it’s where the most damage is, but then as you go to the next ring out, there’s less and less damage as you continue to go out in the rings.
Bill Gasiamis 55:14
And the fact that there’s less and less damage there means that the healing happens. And there’s more intact neurons and connections there because there’s less damage there. And as a result of that, those areas come back online quicker, they make new connections, they reroute better, they do a whole bunch of things quicker.
Bill Gasiamis 55:33
And that’s where people get those little 1% 2% 3% gains, that they didn’t realize they could get down the track, or one, two or three years down the track, and that the doctors don’t really pay attention to but those little one and 2% gains, if you pay attention to those, and you add them up over a year, or over 18 months, or every two years, they actually are a lot.
Bill Gasiamis 55:57
And then you notice how far you’ve come rather than how far you have to go. If you’re noticing how far you’ve come, then you’re going to feel better about that in your head in your mindset. And then you’re going to be more encouraged about continuing the journey
Tsgoyna Tanzman 56:12
100% and this is where that life coaching comes in. Right? Wherever you put your focus and your attention that expands right, you can look at how far you have to go, or how far you’ve come, right. When you look at how far you have to go, it seems overwhelming seems impossible seems like you want to get up, we give up.
Tsgoyna Tanzman 56:35
But when you look at how far you’ve come, how much progress you’ve made, that thought of making progress creates that hopeful or curious or determined condition, which then stimulates the various actions that come from determination. Versus when you feel overwhelmed, we tend to spin not do anything give up. But when we feel determined, because we’re seeing and believing that we’ve made progress, then we continue to make progress.
Tsgoyna Tanzman 57:10
And connections. It’s so interesting that you said that because we found out that the connections between neurons are more important than the number of neurons that have been damaged. But it’s that connection. And I think it’s a great metaphor for for recovery all over the place.
Tsgoyna Tanzman 57:28
Because connections outside in human connection, isolation is probably the worst thing that can happen. And it’s a very common thing that can happen because of stroke, particularly if their communication deficits. But we can be isolated. And we need to connect not only with other stroke survivors, loved ones, our connections mean more than anything
Bill Gasiamis 57:57
I wrote about that recently in my book. So and by the way, I love the amount of overlap between your book and my book. My book is still not out yet. But I finished the last chapter just about a few days ago. And the chapter is about building a supportive community. And I talked about in that community, it’s about really bringing people into that community. It’s not, I use the analogy.
Bill Gasiamis 58:23
It’s not like a suburb, or a locality where you buy a place or you rent a place and you go there, and you don’t get to choose who’s around you. And nor should you. When you go there. Everyone who is there is there and you have to work out who they are and you have to navigate that. But a recovery community is people that you choose to bring in. And they only come in if they’re serving your recovery.
Bill Gasiamis 58:46
And I’m not saying that you don’t talk to people who don’t serve your recovery. Of course you do. You don’t separate yourself from the people that you’ve been around, but you bring in people that are going to be part of your recovery team.
Bill Gasiamis 58:58
They can be doctors, occupational therapists, acupuncturists, they could be Reiki healers, they could be a whole bunch of people that you go to, or that are around you, that are motivating you that are helping you that are bringing you a bowl of soup that are doing everything that is about just having an amazing experience when you’re around them.
Bill Gasiamis 59:25
And it may not be specifically stroke-related, but you just feel good when you’re around them. I know that I chose to hang out and spend the majority of my time with people who made me feel like that I was uplifted when I was there. So they were part of my stroke community recovery community even though they didn’t know that they were part of it.
Tsgoyna Tanzman 59:47
100% and I really make a point of saying in there, you know, PPO of positive people only, you’ve you’ve got to kind of connect with the people that have your vision, that share your vision that share your optimism for recovery, and that are of that same genre, but like, it’s very important.
Tsgoyna Tanzman 1:00:13
What you put into your mind what you put into your body, what you put into your energy field, it is the people that you get to lovingly be with or to lovingly dismiss, you know, like, that doesn’t work for you, you know, and that’s fine. You’ve got to find that support community that furthers your support.
Bill Gasiamis 1:00:38
It seems to be what you talk about in Chapter 13. Right? Which is help is not a four-letter word. Learning how, who, and when to ask.
Tsgoyna Tanzman 1:00:48
Yeah, and that’s for caregivers, as well as for survivors, it really is.
Bill Gasiamis 1:00:58
Caregivers, especially, who often go out of their way to make sure that they’re doing everything for the survivor and neglecting themselves.
Tsgoyna Tanzman 1:01:09
And there’s a huge risk for burnout, and premature, you know, problems, physical problems that happen from caregiving.
Bill Gasiamis 1:01:20
Death, often the caregivers, passed before the person that they’re caring for, they’re doing such a great job on them, that they’re not looking after themselves.
Tsgoyna Tanzman 1:01:31
Right. And I’ve always said, you know, you must fill your own tank first before you become that caregiver. And people really struggle with this, like, how do I do that, I don’t have the time, I can’t do that. And it really becomes a mindset shift to, of finding a way to care for themselves, so that they can be a better caregiver, because you are a human being, we are all only human beings.
Tsgoyna Tanzman 1:02:00
And, we’re all subject to being overtired, over-hungry, over-frustrated, right? We have basic human needs. And we must be able to care for ourselves, if we have any hope of trying to care for another person.
Bill Gasiamis 1:02:21
it’s definitely put on your mask first, in the aeroplane, before put on the mask for somebody else, you can’t help anybody if you’re not around to help them. It’s simple as that. Now, one of the things that are really difficult for some people to do after stroke, and because stroke is so varied in the way that it impacts people, and some people have we’ll call it a minor impact from stroke, which I don’t believe there’s such a thing when the brain is impacted, there’s no such thing as a minor.
Bill Gasiamis 1:02:56
But then deficits wise, some people are impacted a lot more dramatically. And, it’s difficult to get them thinking in a way that’s going to support their recovery. So they might be unable to get up and walk around, they may be unable to go back to work, there might be a whole bunch of issues that makes their identity feel completely different to what it was before they started down the stroke journey.
Finding meaning in stroke recoveryBill Gasiamis 1:03:30
And we often talk about finding meaning, you know, what’s the point of all of this, you know, where’s the meaning in this? You know, what does it mean? And you can understand somebody who’s been seriously impacted by stroke and has a lot of deficits going well, there is a meaning it doesn’t mean anything and going into a negative spin. But I feel like there is a way to even in that situation, find meaning.
Bill Gasiamis 1:03:57
And for me, my version of meaning kind of came from this. I’ve been down this road now for five years, I’ve learned some things I’m going to share them in hopes that somebody who’s going through this is not going to have to struggle the way that I did. And as a result of that. What that did is it allowed the meaning of all the stuff that I’ve been through to emerge and the purpose of my life to emerge. And I had no idea that that was happening.
Bill Gasiamis 1:04:35
And I’ve just spoken about this in my book as well. Because that is part of my hope for people is that they are going to be able to somewhere find meaning. And in order to do that the first thing that you have to do I think you tell me what you feel, I think is you have to do something for somebody else without wanting anything in return. And keep doing that as often as your resources allow you to.
Bill Gasiamis 1:05:08
And then out of nowhere one day, meaning and purpose will emerge. And for me, my meaning is pretty clear. Now, it’s about stroke recovery. It’s about a podcast, it’s about other people and all that type of thing. But it’s become my purpose in life.
Bill Gasiamis 1:05:25
My purpose is to have the biggest database of interviews with stroke survivors and other people who help stroke survivors so that nobody ever has to go through this journey alone ever again. And we, you and all the other people that I’ve had on the podcast are helping me fulfill that. So tell me about your thoughts on meaning and how to help guide people towards meaning and purpose.
Tsgoyna Tanzman 1:05:56
Yeah, I think everybody, as you say, finds their own way to meaning. And I think your discovery of what that was, came from all of your circumstance, not your circumstances, but all of the changes that you made that naturally and spontaneously evolved for you. I’ve seen people so there were I worked with a man who had had a spontaneous carotid artery dissection.
Tsgoyna Tanzman 1:06:31
It was on New Year’s Day. He had spent the morning surfing with his buddies, his wife, and one of his four daughters was on the way to college his eldest daughter that was on the way to college. And he went to go help his mother move a very heavy piece of furniture. And he had this sudden onset of illness that manifested like throwing up and dizziness, and nobody really knew what it was. And he didn’t get any medical help.
Tsgoyna Tanzman 1:07:08
By the time I met this man, he’d already been hospitalized, maybe three weeks. He had the most extreme as far and I’ve seen a lot of stroke patients. He had no usable language whatsoever. He was paralyzed on one side. The sounds that he uttered didn’t even sound like English sounds, they literally sounded alien. But he would look at you. And one gesture he could do, he would put his hand to his heart, and he would close his eyes.
Tsgoyna Tanzman 1:07:48
And you knew that it was a sign of gratitude that he was experiencing well, what became this man’s purpose in life, he’s now 10 years post stroke. He went through lots and lots of therapy, I will tell you one short story about it that was like his immediate purpose in life. And you talk about feeling good for a period of time, there was a program called Life Rolls On. I don’t know if you’ve ever heard of it.
Tsgoyna Tanzman 1:08:19
It was a program that was created by a young surfer who had been surfing he was going he was pro, I believe. And he was in a terrible surfing accident, became quadriplegic. And after he became quadriplegic, his purpose in life was that people would surf no matter what, in any condition, he was going to surf again, and he was going to teach other people to surf, no matter what the condition was. Well, I found out about this program.
Tsgoyna Tanzman 1:08:53
And ironically, you know, like I said, this man’s injury came subsequent to the him surfing that day on New Year’s Day. And we were having a particularly challenging session. I could see he was getting super frustrated. And I remember saying to him, do you want to look at this thing about surfing and in his eyes would like he could understand. He could understand some of the time not all the time.
Tsgoyna Tanzman 1:09:19
Well, anyway, we looked at this program, and I went, do you think you want to try this? And he got really, really excited. I said, Well, okay, we have this small problem. We have to get this part of your skull that is now in your stomach. Because, you know, when I don’t know if you ever went through that, but like, did they put part of your skull in your stomach?
Bill Gasiamis 1:09:42
I have had people who I’ve interviewed who told me that and yeah, it was amazing to hear that. In order to relieve the pressure of the brain, they remove the part of the skull, they store it in the stomach for a period of time and then they take it out of the well it’s actually in the belly fat. And then they remove and put it back. I haven’t heard that. But it’s lovely to hear that thing it’s just amazing.
Tsgoyna Tanzman 1:10:11
So we said, well, this would be really great. We got to get clearance from your doctor. And oh yeah, by the way, we’ve got to get that bone flat back on your head, if you want to go in the water. Right? And it was not very far away. Well talk about having a purpose. Right? By the time that we went to do this, we cleared it with his doctor, he did get his bone flat back on. It required so many people to, imagine getting a half-paralyzed body into a wetsuit.
Tsgoyna Tanzman 1:10:42
That’s no easy feat. Anyway, he got on his surfboard, there were three people in the water with him, getting him to surf, getting him and just joy and elation from having achieved that in the short run. So how does this bring me to purpose and meaning, right? Well, he wasn’t able to go back to work, he was a very smart engineer, he ended up becoming very interested in photography.
Tsgoyna Tanzman 1:11:16
And for him, the purpose and meaning of his life came from photographing his family and his growing family. And that’s where he created his significance and contribution. And everybody’s going to have a different way. A different means another person who had been an architect who could no longer speak and was so frustrated by that started doing paintings, he ended up selling paintings. For a real estate person who was looking for things to stage.
Tsgoyna Tanzman 1:11:59
You know, to stage homes exactly. So I never know what a person’s purpose and meaning is. But I think you touched on something important, I can say that the most successful thrivers, as I call them, have some things in common. And one of those things in common is that they found something bigger than themselves. Something that was more important, whether they called it God, higher power, Allah, Jesus, YeHoVaH, it didn’t matter what it was.
Tsgoyna Tanzman 1:12:37
Even those that were total atheists that believed their doctors were a higher power, finding something that was beyond themselves was important. I think that’s when you’re speaking to talking about doing something for somebody else. It’s believing that there is a purpose beyond you. Right? That was one of them. Finding a sense of humor, finding humor in things, in the most ridiculous things was absolutely a factor in being a thriver.
Tsgoyna Tanzman 1:13:15
Those were definitely two factors. I always call them like my, you know, non-scientific, purely anecdotal features, because we’re always looking at, like, what makes person a successful thriver. And we can connect the dots backwards. And those are two of the most important things.
Bill Gasiamis 1:13:36
I agree. The thing about purpose is it’s not something that you’re going to work out in your head, it’s a heart led thing. You know, you hear about these people who say, Oh, you know, you have to find your purpose. And then they tell you, you’ve got to think about it and you got to work at it, you’re not going to it’s not meant to happen like that you don’t plan for your purpose to come forward.
Bill Gasiamis 1:14:00
But that classic example of taking photos for the family of the growing family for that patient, that guy, he’s doing that for them, as much as he’s doing it for him. He’s doing that for them. He’s taking photos, capturing moments, and giving that as a legacy, something that people can reflect on and look back on, in many years to come and say, Our dad did that or our granddad did that or whoever it was that did that.
Bill Gasiamis 1:14:30
And that’s the thing about it is it’s a reciprocal thing you do for other people you get something back from it, as if I don’t get anything out of interviewing stroke survivors, it’s my therapy session every single episode. And I don’t get to pay for it. You know, people come to me and they tell me their story and we share and I get tons out of what they share. My wife does not want to sit through another 235 conversations about me and my stroke journey.
Bill Gasiamis 1:15:03
I mean, it’s in our lives all day every day. She just doesn’t want to hear it anymore. It’s not her job, right? So that’s what I get about it, that’s the gift that they give me. And then I’m paying that forward to the people who are going to receive that down the track who need that information, who are desperate and do that Google search. And they’re either going to do the Google search and go, I found a podcast, or Oh, my God, I found a book, how about this book, or I found a podcast about a book and it’s maybe you and me. And that’s the thing, right?
Bill Gasiamis 1:15:36
I get a lot out of something about following my path and my purpose, and hopefully the person on the other end is getting something out of it. And my purpose wasn’t to do this at the beginning. At the beginning, my purpose was to get back on my feet. So purpose changes and shifts, right. And it’s broad. It’s not just one thing, and there’s, oh, well, this is my only purpose, I’m not going to do anything else.
Bill Gasiamis 1:16:03
No, there’s many different purposes involved in that purpose. If I’m doing this and I’m happy, then my family life is better. If I’m doing this and I’m healing, then my recovery is better. That means that my wife is impacted better, that means that my children are impacted better, that means that my mom and dad are impacted better.
Bill Gasiamis 1:16:21
So if we’re going around, if we’re going towards a purpose, it’s not just so you know, it’s not a selfish thing. Everybody benefits around you, if you’re following your purpose, or trying to discover your purpose.
Tsgoyna Tanzman 1:16:40
100%, and that is so true what I say about my patients, too, is that I learn more from them, right? I get from them. In working with those people, I learned more about resilience than I could ever learn. So you’re 100%, right that as you fulfill your purpose, it affects the next person and the next person, the next person, everybody benefits from you taking care of yourself.
Bill Gasiamis 1:17:15
Yeah. And I’m going to move on from purpose in a moment, but you could tell it’s a passion of mine, to live it to talk it to encourage people to go down there. The thing about purpose is, it could be as simple as even if your purpose is just to be a great example, to somebody else about how you go about tackling such a dramatic, life-changing situation.
Bill Gasiamis 1:17:40
So that in case one of your loved ones has to go through that in the future, when you’re no longer around, they’ve got some kind of a formula, or some kind of an example that they can follow to help them overcome whatever it is that they might go through.
Bill Gasiamis 1:17:56
It’s better than being the version of a stroke survivor, who just gives up throws the hand in the air and leaves that as the example as to how to go about dealing with a serious issue from a disease or, or a condition like stroke. This has been a beautiful conversation, by the way as we continue to chat about one more thing about the book.
The importance of forgiveness and acceptance in stroke recoveryBill Gasiamis 1:18:24
And come to wrap this up. Chapter 29. And there seems to be a lot of chapters, maybe you can tell me about that in a minute. Chapter 29 is about forgiveness and acceptance. Tell me a little bit about your thoughts on forgiveness and acceptance. Who are we forgiving? What are we accepting?
Tsgoyna Tanzman 1:18:44
Yeah. Well, there’s a lot about forgiveness with regard to stroke, right? Where we start to sometimes were angry at I know, I worked with a man who was angry at the physician who caused the stroke, right when he went in for a surgical procedure. And he stroked out his thought was the surgeon cause this, right? That can certainly happen when you’re having a brain surgery and something goes a muck.
Tsgoyna Tanzman 1:19:17
You know, I don’t know if you’ve ever read the book, Gray Matters. Dr. Levy, brilliant neurosurgeon who worked in the brain and I really looked at his work too, because it was so important. When I first went to hear him speak. He described himself as being the kind of guy that wanted to get warm and fuzzy with his patients as long as they were anesthetized behind a scalpel.
Tsgoyna Tanzman 1:19:46
That was as close as he wanted to get. And he would perform these very high risk surgeries of removing aneurysms and all that kind of thing, and occasionally, he had a bad outcome. And his was all about praying with patients before but forgiveness is there’s so much a patient I’ve heard of, I shouldn’t have lived this way, I should have done something different.
Tsgoyna Tanzman 1:20:16
There’s forgiveness of themself for lifestyle, there’s forgiveness of other people, but when I heard the words taken apart, forgive, as for give, how can you be for giving yourself love? Can you be for giving yourself? Appreciation?
Bill Gasiamis 1:20:42
Wow.
Tsgoyna Tanzman 1:20:45
I mean, that just put it in a context for me, that still gives me the goosebumps. And understanding, you know, they say that, anger or harboring resentment towards somebody is like drinking poison and hoping the other person will die.
Tsgoyna Tanzman 1:21:03
And there is a degree of peace that comes, especially when we are for giving ourself a new beginning, a new start, the acceptance is a challenge, it doesn’t mean we like it doesn’t mean anybody’s going to choose yep, I’m gonna choose to have a stroke, that’s a great thing. You know, I didn’t put that on my to do list. And I didn’t want that to happen.
Tsgoyna Tanzman 1:21:37
And here this situation is when we come to terms and everybody has to do it in their own time, and in their own way. But when there’s the acceptance of this is where I am right now, doesn’t mean that I’ll be there a year from now or five years from now. But where I am, and to literally except, to move all the way to love, appreciate, what can I appreciate about myself today, today, just as I am. That’s really powerful. Because that’s where we move into that mindset.
Tsgoyna Tanzman 1:22:29
When we resist that, when we absolutely don’t accept it, and we resist it, our resistance grows greater, our stress level goes greater. And any ability for us to really embrace our body’s natural resilience and facility to improve is stifled is dampened. And that is where we do have some power. And it may require working with a professional that can help you get to that place. I’m not saying that it’s an easy place to get to.
Tsgoyna Tanzman 1:23:12
But even the self help that you can get from putting your thoughts down on paper and looking at them out of your head is a place to evaluate them in a better way. Recognizing that any of those thoughts are thoughts that there are people that have had strokes that may have a different like a person like you right?
Tsgoyna Tanzman 1:23:44
At this stage of your recovery again, not that you would choose it. But where has this come in your life? You have found a purpose that is so powerful for you. That had you not had a stroke you wouldn’t be where you are today.
The stroke got me out of my headBill Gasiamis 1:24:00
No way. Yeah, I would not be and I hate to think what kind of person I would have been because the path I was going to wasn’t a fun one. I was cranky, I was working too many hours. I had too many negative thoughts. I didn’t believe in myself. I didn’t think that anything was possible. I had never done any personal development. I thought that I had all the answers and nobody else knew anything. I was a great guy to be around.
Bill Gasiamis 1:24:37
But I was my own worst enemy like so terribly bad to myself. But you wouldn’t guess it by being around me or seeing me or hearing me interact with other people. I was just the hardest person on myself and I wasn’t an encouraging of myself. And what the stroke did for me it is it got me out of my head. So I had a really overthinking over negative head and my stroke meant that the head switched off for a few months.
Bill Gasiamis 1:25:12
And that was what allowed my heart to come forward and express itself. And then it allowed me to hone into my heart’s desires. And then to follow them, because my head wasn’t telling me not to. And then that made me find those amazing people and make them part of my community. And then they made me follow and fall into personal development courses, and discover what I’m capable of.
Bill Gasiamis 1:25:47
And then, of course, overcoming the not being able to walk again, and learning how to walk again, was a massive, a massive personal development opportunity that I did on my own, but with obviously, the help of all the therapists, and it just took my growth, my personal growth to the next level, so it just taught me things that it was impossible to learn any other way. And I’m glad that it came at 37 and not 57, because at least the 37.
Bill Gasiamis 1:26:30
It was well overdue, I was well overdue from being in that position of stuck in a stuck mindset. And I needed to move into a growth mindset. And that’s kind of what has continued to happen. I didn’t know that I was in a growth mindset, by the way, and I didn’t know that it was in a stuck mindset. I know that now, because I’ve read a book about it, you know. But it’s what happened, and I can reflect on it really lovely now.
Bill Gasiamis 1:27:03
Yeah, I would hate to think where I would have been, I think I still would have been successful, I still think I would have been a good family man and I would have had all of that stuff. But I feel like there would have been a lot more, potentially a lot more tension, a lot more stress, a lot more unnecessary kind of stuff that doesn’t support happiness, I think is where I would have been. But you wouldn’t know it if you met me on the street.
Tsgoyna Tanzman 1:27:39
Yeah, it’s remarkable to see who you became, what was available to you. What creativity, what wisdom, what genius would come from this, and you’re not the only person I’ve ever heard say, my stroke turned out to be a blessing. You know, I hear that time after time.
Tsgoyna Tanzman 1:28:05
And that’s why it is just so remarkable to me to listen to each person’s story about how and what they learned about themselves, how badass they learn, they became, how resilient. Like really, it’s like, how loved they were so many of those things have occurred to people that I just continued to marvel at each individual story is so remarkable.
Bill Gasiamis 1:28:36
Yeah. Thank you so much for reaching out being on the podcast.
Tsgoyna Tanzman 1:28:40
Oh, such a pleasure Bill, like amazing. And thank you too, for sharing your journey, but also this beautiful new purpose that you have developed over these years and just keeps expanding. And I think I can find somebody that help you talk about sex.
Bill Gasiamis 1:29:00
Please, I want to talk about sex. Get them on, let me know.
Tsgoyna Tanzman 1:29:03
Okay. Take care, thank you.
Bill Gasiamis 1:29:06
Thanks so much. Thanks for joining us on today’s episode. I hope you enjoyed that particular conversation as much as I did, it was really lovely to hear the approach that somebody in the position of Tsgoyna has taken and the benefits that her patients and clients have received over the years because of her amazing way to go about supporting people on the road to recovery.
Bill Gasiamis 1:29:39
Now to learn more about my guests, including links to their social media and other pages and to download a full transcript of the entire interview, please go to recoveryafterstroke.com/episodes If you’d like to support this podcast, the best way to do it the way that I would love you to do it the way that I would really really, really appreciate get you to do it is to go and leave a five-star review on your particular podcast app.
Bill Gasiamis 1:30:06
Whether it’s the Spotify app or the Apple podcasts app or any other app that you listen to your podcasts, that would be fantastic. If you are watching on YouTube, please leave a comment below the video, just two words is fine. Anything to make the algorithm push the episode to more people, way more people need to listen to this episode. And the algorithm won’t do that unless there is interaction with the episode.
Bill Gasiamis 1:30:34
So if you’re on YouTube, please hit the like button. Subscribe. And definitely leave a comment. I answer all comments, whether you have questions, whatever it is, just please let me know what you think about the episode I would love to hear from you. Sharing the show with family and friends on social media will make it possible for people who may need this type of content as well to find it easier.
Bill Gasiamis 1:30:58
And that’s going to make a massive difference in their recovery. It really does. This is exactly what people who are recovering from stroke need just like you. Hopefully you can share this and let other stroke survivors know about it. Now, if you are a stroke survivor with a story to share about your experience, just come and join me on the show. The interviews are not scripted, you don’t have to plan for them.
Bill Gasiamis 1:31:21
All you need to do to qualify as best stroke survivor you need to be a caregiver for a stroke survivor or you need to be somebody who works to help stroke survivors overcome whatever it is that they’re challenged with. So go to recoveryafterstroke.com/contact fill out the contact form. And as soon as I receive your request, I’ll respond with more details on how you can choose a time that works for you and me to meet over zoom. Thanks again for being here and listening. I really appreciate you see you on the next episode.
Intro 1:31:54
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals opinions and treatment protocols discussed during any podcast or the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed all content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis.
Intro 1:32:24
The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.
Intro 1:32:48
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Intro 1:33:13
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The post Some Much Needed Hope After Stroke – Tsgoyna Tanzman appeared first on Recovery After Stroke.
In this episode of our podcast, we talk to Kristin Taylor who survived two strokes while traveling abroad. Kristin shares her journey of determination and resilience, as she recounts her experiences and the challenges faced. From navigating the healthcare system overseas to their emotional recovery, this interview provides a unique and powerful insight into the world of stroke survival and recovery.
Highlights:
00:46 Introduction
02:39 The Really Bad Migraines
06:56 Having A Stroke Abroad
12:09 Kristin Taylor Had An Ischemic Stroke
15:26 Vision Loss Caused By Anti-Migraine Medication
20:00 Just Another Bloody Tourist
26:56 Pushing The Limits To Get Out Of The Hospital
31:24 Coming Home
38:13 You’re A Lot Stronger Than You Think
46:46 Not “Looking” Like You’ve Had A Stroke
58:05 Achieving The “Impossible”
1:03:45 Post-Stroke And Training Diet
Transcription:
Kristin Taylor 0:00
One quote that I live by, like after this all happened is if it doesn’t challenge you, it won’t change you. And I think it’s just taught me you’re so much stronger than your mind and you just gotta keep pushing and don’t ever ever give up like it’s okay to have shitty days and stuff like that, but just pull yourself out of that. And it’s taught me to don’t let other people predict what your future is gonna look like because they’re wrong.
Intro 0:34
This is the recovery after stroke podcast. With Bill Gasiamis, helping you navigate recovery after stroke.
Introduction
Introduction – Kristin Taylor
Bill Gasiamis 0:46
Hello, and welcome back to the recovery after stroke podcast. This is episode 235 And my guest today is Kristin Taylor, who was only 21 when she experienced two ischemic strokes on the Amsterdam leg of a European trip in 2014.
Bill Gasiamis 1:03
Her tenacity and rebellious spirit has proven to be very beneficial as she continues to overcome the limitations of her body proving her doubters wrong along the way. Kristin Taylor, welcome to the podcast.
Kristin Taylor 1:15
Thank you.
Bill Gasiamis 1:17
Hey, fellow Aussie from Wollongong, I love Wollongong.
Kristin Taylor 1:21
Yep, yep.
Bill Gasiamis 1:24
Beautiful part of the world. Thanks for being on the show. Tell me a little bit about what happened to you.
Kristin Taylor 1:29
So I was actually 21 at the time traveling during Europe, with my friends. And previously to these trips, I had been a really bad migraine sufferer went to a number of neurologists, and no one could really pinpoint why they were happening and stuff like that.
Kristin Taylor 1:56
I used to always get cluster migraines where I’d have three days off work sometimes I’d get the whole lose my vision, everything like that and get a really bad headache and then throw up and everything so yeah, and leading up to these trip but I was I don’t know you can say I was a little bit stressed.
Kristin Taylor 2:18
I was a little bit of a stress head. And I had a few migraines were now we look back at it and think they could have been TIAs. They were really bad where I completely would lose my vision. I actually had pins and needles down my face one time, but just was just like whatever.
Kristin Taylor’s Really Bad MigrainesKristin Taylor 2:39
No one can solve these it’s just hereditary. I just get migraines, I have to get used to it. They prescribe this medicine, it was called Maxalt. And I used to take that it never used to help Panadol never used to help Nurofen I ended up I couldn’t take anything with codeine in it.
Kristin Taylor 3:00
That was kind of the only thing that helped. But then the neurologists figured out that what was happening, I was taking the codeine, when I’d get a migraine, it would knock me out, take away the pain. But then the next day, I would get another migraine so that I would give my body more codeine.
Kristin Taylor 3:23
So yeah, had quite a few bad ones before I ran overseas. And then I had a little bit of a turn when we we’re in London visiting one of my friends, family members, and I just said something doesn’t feel right. I almost had like vertigo, I just was off balance, I was feeling sick, I was just really, really exhausted.
Kristin Taylor 3:51
And that lasted probably about three days. And then anyway, we’re traveling, we’re in Amsterdam. And I used to also get migraines when I’d be hungover. Obviously with all the artificial stuff in drinks and everything like that.
Kristin Taylor 4:11
So the day before I had the strokes, I yeah had a really bad migraine was throwing up and everything like that. But then my friends obviously being overseas wanted to go out. And we went out for the night and I just said to them, I just don’t feel right.
Kristin Taylor 4:29
Like I’ve still got a really bad headache. I still feel really sick and everything like that. And then one of my friends she just said come on, let’s go we’ll go back to the apartment. And yeah, and then we were back at the apartment together and she just looked at me and she said are you okay? And I said yeah, I feel a little bit funny. I’m gonna get up gonna go to the toilet.
Kristin Taylor 4:54
And for some reason she followed me. And then when I came out of the toilet, I just said to her, I feel like I’m gonna faint. And then I obviously quickly laid down on the floor. And she lifted my legs up and everything. And I just looked at her and I said, I don’t want to scare you but all down on my right side of my body, I’ve just got these really, really intense pins and needles.
Kristin Taylor 5:20
Like, you know, when your arm goes to sleep, and like, you just can’t shake the pins and needles and they hurt, like, so this was happening, you just would have drawn a line down my body. And the whole right side was just gone, just pins and needles.
Kristin Taylor 5:39
And anyway, she got me up, we sat on the lounge. And I think without us even noticing, I stopped using, obviously my right side. So the two clots that I had the first one, they were both on the left side of the brain, which affected my right side.
Kristin Taylor 5:39
And then I started to get really bad headache. And then I started to feel really sick. So almost similar to how I used to get my migraines and everything, but obviously had the pins and needles and everything, which was different.
Kristin Taylor 5:58
So she just like kept monitoring hand everything. And then my other friends came back from their night out. And I think everyone was just kind of trying to play it cool. And I’m very, I don’t know, if I have to go to hospitals, something seriously is wrong and that scares me.
Kristin Taylor 6:38
So I avoid, avoid, avoid, which I did in the situation. We were just all hanging around in the lounge room. And my friends were just saying to me, you know, like, if you want to go to hospital, just let us know. We’ll call an ambulance, all of that stuff.
Having A Stroke AbroadKristin Taylor 6:56
So we just waited probably about two hours. And I was obviously starting to panic a little bit because the pins and needles weren’t going away. I just kept wanting to vomit. My pain in my head was just getting excruciating. And then yeah, we made the call to call an ambulance, obviously being in Amsterdam.
Kristin Taylor 7:22
They were like, young girls probably drink spiking, drugs, whatever. So they weren’t really that nice when they picked us up. So got me in an ambulance. And then we’re in emergency got sent for a CT scan. And then as I was in the hospital, I started to become really disorientated.
Kristin Taylor 7:51
I was getting confused, I started to lose my speech. And that in itself was so frustrating, like I can’t explain that to anyone like they were asking me what day it was. And I would say something, but then this, like gibberish would just come out and it was so so frustrating for me.
Kristin Taylor 8:13
And then a nurse is still we’re just kind of being really horrible. And my best friend at the time, she just looked at the nurse and she said, Are you sure my friends not having a stroke? I’m like, because she had watched her dad prior to coming overseas, watched her dad had a stroke.
Kristin Taylor 8:34
And the nurse just looked at my friends and said, you girls need to calm down. Your friend is not having a stroke, just sit down and be quiet. And then anyway, so they left us down in emergency that if they did think it was drink spiking or whatever, they didn’t give me any fluids.
Kristin Taylor 8:54
They didn’t want me on a drip. They didn’t like give me any painkillers, nothing. And then eventually, I think it was like close to 10 hours later, they put me up in the ward. And the head neurologist, he came and did the rounds the next day, so I was still in the same clothes from the night before I hadn’t had any fluids hadn’t had any water like nothing.
Kristin Taylor 9:11
And then the had neurologist came around and first thing he did, he got me to sit up in the bed. And he went to shake my hand and without even noticing I gave him my left hand instead of my right. And he just looked at me and he said, why didn’t you give me your right hand, I said oh l don’t know, it just didn’t work.
Kristin Taylor 9:51
And he said okay. And then he goes alright, close your eyes. I was like alright, and then he goes, lift your left arm up. lifted my left arm up fine, and then he said, lift your right arm up. And then he repeated himself. He’s like, lift your right arm up.
Kristin Taylor 10:10
I’m like I can’t. And then he said, Okay, he’s like, stand up with me and said, I can’t. Sorry, he helped me stand up. And then he’s like, okay, he’s like, how’s your head feeling on like, excruciating. It’s really, really killing me. And he’s like, and then he did the sensation test where they run that horrible thing under your foot, and everything like that, which was horrible.
Kristin Taylor 10:41
And I just explained to him the sensation that I was having down the right side of my body. And I said, it’s horrible. Like, I just want to get rid of these pins and needles. And he said, Okay. And then he just looked at his team. And he said, it’s almost 24 hours later, why has she still not gone for an MRI yet?
Kristin Taylor 10:55
So then anyway, panic, obviously, my friends, they left the hospital, they went home to shower, and everything like that, I went to get my MRI, which was for somebody, you just can’t explain it for somebody that can’t actually move their right side of their body, and had these pins and needles just laying still for that amount of time.
Kristin Taylor 11:22
And having that anxiety of like, What the hell is going on? It was just horrible. It was like I was in that MRI machine, for like hours, and just couldn’t wait for it to be over. And then the nurses wheeled me back into the room. And within, it was about an hour they had neurologist came back and he said, Where are your friends? I said they’re just off showering, they’ll be back soon.
Kristin Taylor 11:51
He said, Okay, we’ll just wait until they get back. So obviously, being on my own, I was just like something seriously wrong. And I was just like, oh my gosh, and then my friends came back and God bless them, they had come up with a complete plan of what we were going to do.
Kristin Taylor Had An Ischemic Stroke
Kristin Taylor 12:09
They’re like, when you’re better we’re gonna go here, we’re just gonna chill it, like my family friends house in London, like trying to be all positive. And I’m just like, No, something’s seriously wrong, because the neurologist wouldn’t talk to me on my own. And then anyway, he came back when they were there. And he just said, Look, I’m extremely sorry, you have had an ischemic stroke, you’ve got a massive clot.
Kristin Taylor 12:42
And I kind of just was in shock. And I had one friend, she just walked out of the room, I had another one on the end of the bed, just crying. And then I had the other two just like what the hell and I just burst into tears. And the head neurologist just said, like, we need to take this extremely seriously. He’s like, I know your friends are here with you.
Kristin Taylor 13:08
But we need to get in contact with immediate family now and we need to get someone over here. So they kind of just said, I’ll give you a minute. And then we’ll come back and we’ll have a chat and everything. So yeah, we were all obviously blubbering messes. I was just everything was running through my head just going oh my gosh, like, I’m like this for the rest of my life.
Kristin Taylor 13:36
I didn’t even know what to think. And there was a point there that I was like, I just, I’m gonna get emotional. But like with the pins and needles and everything. I thought, if they’re there for the rest of my life, I don’t even want to be here. Like, that’s no way of living. Like it was just horrible. And then yeah, anyway, my friend obviously contacted my mom, and was just like, everything’s okay. But Kristin just had a stroke and my mum was just like.
Bill Gasiamis 14:14
Everything’s not okay.
Kristin Taylor 14:16
Yeah, yeah. She’s like, what do you mean she’s had a stroke? And she just explained the situation and everything. And then obviously, that day, my family got things rolling and everything. The hospital was really good. The head neurologist spoke to my mom and just said, like, you know, we need someone you can’t both come over here because we need someone in Sydney, organizing everything organizing all appointments for when I’d get back and everything like that.
Kristin Taylor 14:51
And then, anyway, while she was in the air coming over, they ended up moving me into a private room on my own. It was a completely different story, the nurses and the doctors and everything that were really harsh prior to that they all were fussing, they were like, We’re so sorry what happened like, and I was disgusted with like the care that they gave me prior to knowing what was wrong and they even came around to like shower me to wheel me into the like shower.
Vision Loss Caused By Anti-Migraine MedicationKristin Taylor 15:26
And I just said, No, I don’t want you to touch me. Like I’d prefer if my friends can shower me and everything like that. And then yeah, when I got moved into the private room, the next day, I thought I was having another migraine attack. The symptoms that would usually occur with my migraines, they were all out of whack. So I would usually lose my vision first, I would get the headache, and then I would vomit.
Kristin Taylor 16:01
Where we this time around, I felt sick first and went to throw up and as I went to throw up, I got the headache like really bad shooting pain on the left side of my head again. And then quite a lot of my vision went and it wasn’t. Usually when I’d get my migraines it would be almost like pixelated, where these time, the vision on my right side was just gone.
Kristin Taylor 16:31
And I was like, okay, that’s not normal. And then my friend said she’s got medication that she usually takes when she has these migraine attacks. Can we go get it? And the doctor said, yeah, go get it, we’ll have a look at it. Anyway, when I got back, the doctors had a look at that. They took one look at it. And they said no, she should have never ever been prescribed these because these actually my type of migraines obviously, the arteries are tightening and that’s why I would lose the vision.
Kristin Taylor 17:03
Where apparently this medication would do the same thing. So it was making it worse. Yeah, yeah, so that was interesting. And so no wonder why it never did anything because it was actually making it worse. Anyway, they left us alone for a bit. And actually my sister, she was traveling in Southeast Asia at the time, and she called me because she hadn’t heard from me for two days.
Kristin Taylor 17:35
And she knew that something was wrong. And when I spoke to her, I was obviously going through these having a little bit of a turn. Didn’t even remember talking to her. And at that point, she was like, I need to get over there like, and anyway, the head neurologist came back eight hours later and he said, How are you feeling? I said, my head is killing me.
Kristin Taylor 18:02
And he said, Okay, how’s your vision? And I said, No my vision’s still gone. And he said, Okay, it’s been eight hours now we’ll send you for another MRI. So and by this point, this is two days in hospitals. So I was already on the heavy blood thinners, getting the injections like everything. And yeah, they sent me for another MRI.
Kristin Taylor 18:30
And then in between that my mom had arrived. And my friends could go back to the hotel and chill and everything and gosh the poor thing she was in all sorts she was just an emotional wreck, and she was jetlag, she was so tired and everything like that. But yeah, when she got there, they head neurologist came around and said, Look, were really, really sorry. You’ve actually had another stroke.
Bill Gasiamis 19:02
That time.
Kristin Taylor 19:04
Yeah, so if I didn’t have the second one. My vision would have been fine so I would have Yeah, I had obviously lost like my mobility on my right side and everything like that. I lost the sensation on my right side, but my vision up until that second one was completely fine. So you can imagine my mom was just like, how did you miss these?
Kristin Taylor 19:31
Like, how could you not and the head neurologist was just like, you know, she’s young. She’s 21 like she wasn’t showing like the typical signs like she could still you know everyone says if you’re testing someone for having a stroke, get them to poke their tongue. Yeah, get them to do these. I could still do that. So I’m like that’s not always the case.
Just Another Bloody TouristBill Gasiamis 19:57
And you’re a tourist, you’re in a country where it’s known for people traveling to go and get high and stoned and all that kind of stuff, you know, the bloody tourist who’s turned up sick to the hospital, everything kind of fits the picture of another bloody tourist, you know, and it’s really hard for them because they’ve got to separate the tourists, in their mindset from the sick patient and always assuming that it’s a stroke is probably the wrong thing to do.
Bill Gasiamis 20:33
But never assuming it’s a stroke is also the wrong thing to do. And, you know, that’s the thing, like, and maybe they were on the 14th hour of their shift, and God knows what was going wrong. You just became unlucky with the way it all turned out.
Bill Gasiamis 20:54
And now, what’s really interesting to me is how vividly you are telling the story and how well you’re sharing like, every single detail, it doesn’t feel like it just happened yesterday, it seems like it’s just so fresh. I know it was in 2014. What’s it like for you, nine years later, to be sharing the story in this way?
Kristin Taylor 21:24
I don’t know, it’s yeah, I’m like, I was really nervous about coming on here. Because I didn’t know how I would feel. But then, like, I love telling my story, because I love inspiring other people, especially young people. And, yeah, it does honestly just feel like yesterday. But I think, I’m happy to share my story, just because I really, really want people to know that they’re not alone.
Kristin Taylor 22:06
And you’re not I think the hardest part for me was the head neurologist, he just, I don’t know, my family are very, very positive. And we try and make light out of a crappy situation. And you can say, this is a pretty crappy situation. So like, I obviously was learning how to eat again, and everything like that.
Kristin Taylor 22:36
I went to OT once my sister had got over there. And my mom just said, can you go to OT with her? And it was the first OT session. And they said, Okay, pick up a pen and write your name. And I didn’t even think of that. So I was kind of, I guess I was more fascinated with what was going on with my body than really concentrating on what was actually happening.
Bill Gasiamis 23:08
What you couldn’t do? I like that though. That’s really interesting to be fascinated about what’s happening to your body, rather than worried about what’s not happening. I think that’s a real good shift in your mindset.
Kristin Taylor 23:22
Yeah. And the more doctors said things to me, the more it pushed me to go against what they said, if that makes sense. So the first thing they said to me, all right, what do you want to do with your writing? Do you want to train your left side? Or do you want to retrain your right side? And I just looked at them and I’m like, Are you kidding? I’m like, I’m just going to retrain my right side.
Kristin Taylor 23:48
I’m not going to like learn how to use the left hand now like, and everything and same thing, like the head neurologist came around, and we were having a good laugh. I was I think we were testing myself, we were eating peas, or something. And like, my hand just had a mind of its own. Obviously, I lost the vision. So I’ve lost my hand eye coordination.
Kristin Taylor 24:15
I’m sitting in the hospital bed with a spoonful of peas, and literally, peas have gone everywhere and it just so happen we’re having a good laugh about these. And then the head neurologist comes in and sits down, and we’re just like, oh, you know, like making a good joke, she just “pead” all over the floor and everything. And then he was just like, you know, this is a really serious situation like, you’d be like this for the rest of your life.
Kristin Taylor 24:52
And he goes, what do you do for a job? And at the time, I was working with children with autism, quite a high behavior, quite demanding on the body and everything like that. And he said, yeah, you’re not going to go back to that when you go back to Sydney, you’re going to have to change jobs, you’ll probably be walking with a walking frame or a walking stick and all of that, and I just looked at him and I said, how do I get out of hospital? When can I get out? And he said, Oh, let’s just take one day at a time. And I said, no, like, what will it take for me to be able to leave here?
Intro 25:32
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like, how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse, and doctors will explain things that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 25:57
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website now, recoveryafterstroke.com and download the guide. It’s free.
Kristin Taylor 26:35
Because I was just so off him then once he said that I was just like stuff you I love my job like and I’m not giving that up like so anyway, you said once you can walk for a minute, then we can think about getting you out of hospital. And I just said okay, all right, no worries.
Pushing The Limits To Get Out Of The Hospital
Kristin Taylor 26:56
So anyway, that day, I just said to my mom, I was like getting in the wheelchair, get me downstairs, take me outside. I do not want to be in this hospital. And I won’t come back until they need me for OT or Physio, anything like that. So we just every day they take me down in the wheelchair we just go for walks around Amsterdam with me and the wheelchair and everything like that.
Kristin Taylor 27:23
And then yeah, the day came where they were just like, Okay, you have to walk for a minute. And people on here will think like a minute is nothing. And I was just Yeah, I pushed myself so hard. I used to my arm would just sit up like this. And I just dragged my right leg and I walked for that minute nonstop. And I was so so sick. I was just throwing up so much after it like my head was pounding and that just did me for the day.
Kristin Taylor 27:58
But after that, they would like to say that was two weeks. And they will okay. As long as you’ve got all year they obviously checked if we have like cardiologists booked in if we add neurologist appointments or booked in back in Sydney, we have to get the health insurance to organize all of the flight home.
Kristin Taylor 28:18
The nurse, I have a nurse with me to fly all the way home to come all the way to the front door with me. And everything. And yeah, they let us out. So we by this time, my sister as well. She flew back continued on her holiday. But then my mom and I we were just at a hotel near the hospital for I think it was an extra week just while they organize like the nurses and everything like that.
Bill Gasiamis 28:46
Where were your friends in the meantime, because they’re on holiday.
Kristin Taylor 28:50
Yeah, so they were really they were in two worlds. And they were just obviously trying to be good friends. And they like we don’t want to step and my mom just looked at them and said you know what you need to continue your holiday. It’s not now that she needs you. It’s further down the track that she’ll need you. So they continued on. They went to sail Croatia and all of that stuff. And then I just told them obviously when I got home but yeah.
Bill Gasiamis 29:23
Wow. That would have been hard. Was that hard for you? You’re laying in hospital. They’re leaving going to the next leg of the trip?
Kristin Taylor 29:32
Yeah, yeah, extremely hard, but as well, I think I was just extremely although things happen the way that they did. I was extremely grateful that I wasn’t on the next part of the trip because the next part of the trip was sail Croatia, knowing me I probably would have been hung over I probably would have put myself in a room on the boat and things could have ended up a lot worse.
Kristin Taylor 29:57
I mean after things did come through, and we knew what was going on the doctors and the nurses obviously had a complete turnaround and they were really good. The only thing that we didn’t the pain threshold, apparently in Amsterdam is completely different. So the whole time, they had morphine on standby for me. And I just kept saying, like, pain is at a ten.
Kristin Taylor 30:24
And they’re like, Okay, here’s more Panadol. And it wasn’t until like the I think it was like the ninth day in the hospital and these lovely nurse he came in and he said, do you understand our pain threshold? Because like, I’m reading your body and thinking, Nah, there’s no way this girl is a 10. And he’s just like, one is actually our worst with pain. So he’s like, we’ve had more pain on standby for you this whole time. And you’ve just been taking Panadol I’m like, Oh my gosh.
Bill Gasiamis 31:03
And 10 is the worst for us in Australia. 10 is the worst pain. And you’re saying and they’re going one. Oh, my God.
Kristin Taylor 31:14
Yeah, with just looking at me, you would have been able to say I was just yeah, I’ve never ever had pain like that in my life.
Coming Home After A Stroke AbroadBill Gasiamis 31:24
That’s crazy. What’s it like landing back home after you’ve been on such a dramatic? life-threatening, you know, problematic situation so far away from home with nobody around you until they finally got there? Like, what’s it like coming home?
Kristin Taylor 31:43
That still makes me tear-up. That was such an emotional like, even like before going home, the nurse obviously had to come to the hotel, and she had to meet me and she had to test everything out and explain everything that needed to happen on the flight and go through all of that. And even then the day she came to see me, she goes, You need to calm down.
Kristin Taylor 32:13
She’s like, your heart rate is through the roof. And I was like, I know, I’m like, I just want to get home and because everybody was so drained, like with the time difference, like trying to call Dad and get him to organize everything. Like was just yeah, so the nurse, she actually came all the way home with us. So she even it was just such a big emotional experience because we pulled up in the driveway.
Kristin Taylor 32:47
And dad was obviously there and even the nurse like she walked me up to the front door and we were just all crying and I was like I was ruined. I was so like, just being on the plane. And everything was just touching back down in Australia and just getting home to like Sydney and getting home to like my own, like house was just, a breath of fresh air and just like oh my gosh, like I can’t believe what has just happened.
Kristin Taylor 33:25
Like my mom, she will still memories pop up on Facebook of like the day we’re all coming home and she’s just, she’s always like, Oh my gosh, I could still cry like, and we often have like little moments where we just we’ll both cry and everything like that. But it was just an amazing feeling getting back home and because it changed everyone like even my dad was working at the time and even mom kind of took turns.
Kristin Taylor 33:55
So my dad who very rarely took time off-work was yeah, he took I think it was about a month off and he took the responsibility of pretty much being my carer taking me to all my rehab appointments. We’d go do the shop together that was part of my rehab learning to walk with a trolley and everything like that. And just getting out around in those surroundings and stuff which was amazing. My family was just great.
Kristin Taylor 33:55
What was the underlying cause of the blood clots. Did they work that out?
Kristin Taylor 34:38
So they ended up in a neurologist back in Sydney, he said the contraceptive pill and then the type of migraines that I used to get so obviously are from the contraceptive pill. I was getting migrains which Touchwood since I’ve had a stroke and I have not touched any form of contraception. I have not even had one migraine. And now it’s really funny because you talk to people, you talk to females, there’s obviously enough studies now. And I’ve had, I think, to people I’ve known have gone to a neurologist and said, I’m getting migraines, first thing they do take you off the pill.
Bill Gasiamis 35:25
I know the back of the box that has all the side effects and all that says stroke in one of them. And in the other one, you know, there’s a whole bunch of other symptoms, right? Like, of what can happen if you take the contraceptive pill, when you decided to go on birth control, which is a really smart decision for a lot of people to do, right?
Bill Gasiamis 35:55
You think you’re being proactive and you’re doing it? Were you aware of the risk of stroke? And was there no moment where you went? I never had migraines. Before then I started taking this thing. And now I have migraines. Did you connect the dots at all? Was there any idea? Did you have any awareness of any of the side effects?
Kristin Taylor 35:55
No. And the frustrating part, too. I’m so frustrated at myself, because I didn’t even really need to be on it when I was on it. But because I had obviously found one that worked with my body. I was just like, I’m not even going to go off it. But originally when I was younger, and did when I first started on it, I was just yeah, the stuff that it did to my body. I just wished it was enough to go not look at what these can do to your body, that’s it.
Kristin Taylor 36:21
Yeah, but I did. Like I had the neurologist in Sydney. And he was extremely funny because I talked they always say bring all the medications you take and everything like that. And he wouldn’t even touch the pillbox he was just like was I think a bit funny about that. So that wasn’t even we just did a food diary. I eliminated like, I love chocolate. And I eliminated chocolate for a year we found out that was a trigger. I couldn’t have tomatoes couldn’t have processed food, all that stuff like alcohol, all those triggers. But no one ever said anything about the contraceptive pill.
Bill Gasiamis 37:44
Ridiculous. I love the fact that you’re 21. And you’ve handed him a contraceptive pill. And he’s unfortunately, gone and done the dad thing and he’s probably thinking of why he’s doing all that stuff and he’s gonna kind of talk about it. I’ll just ignore it pretend it never happened. He’s probably got a daughter your age and thinking could just as easily be my daughter. He was freaking out. It didn’t know what to do.
Kristin Taylor 38:08
Yeah 100%.
You’re A Lot Stronger Than You Think
Bill Gasiamis 38:13
Love absolutely love it. So you’ve overcome those initial couple of years? What did they teach you about yourself? It would have been hard and you would have had to gone through as a 21 year old. Some of the hardest days of your life, you know, you’re just fresh out of school just starting to explore the world spread your wings sort of discovering what’s out there, then you get stuck in this situation. What does it teach you about yourself
Kristin Taylor 38:46
Like a prime example, the head neurologists, you’re gonna be like this for the rest of your life. I had a physio that said I was inspired by my sister who used to do bodybuilding and base it off you with all your issues like you’ll never be able to do that. So straightaway I was like no that’s it. Like once I finished my rehab everything I thought I was Yeah, into the gym and I’m yeah, I’m coming up to like my third season of competing in bodybuilding comp I guess it’s yeah, just told me you’re yeah, you’re a lot stronger than what you think. And if you believe you can overcome it you 100% can and you should never ever, ever doubt yourself.
Bill Gasiamis 39:43
Yeah, I agree. So what are you dealing with now? It’s been nine years have the vision returned. Do you have deficits on that right side still? What What’s that situation like?
Kristin Taylor 39:58
That So you can literally draw a line down the middle of my body and my right side, the way I explain it, because as soon as I say numb, everyone’s like, what you can’t feel me pinching you or you can’t feel this. And I was like, no I can. So when you go to the dentist and you get a numbing needle, and you can still kind of feel your face, but it’s that weird sensation.
Kristin Taylor 40:28
So I’ve got that all down on the right side of my body. And obviously, like some points on my right side are a little hypersensitive to others. So I do need to be mindful, like with hot water, or anything like that, that can sometimes catch me off guard because on my left hand, it won’t feel too bad. But then on my right, it may. I’ve got so division on my right side, never ever came back.
Kristin Taylor 40:55
So it’s like the way to explain it. It’s the top quarter of my eye on the right side, and then a little bit of the bottom quarter. And then, obviously, like with my right hand, they always say like your fine motor is a lot harder than your gross motor. So my right hand of turn seizes up or it twitches a lot. And I find that happens quite a lot when I’m really really stressed.
Kristin Taylor 41:32
Apart from that, everything is pretty good. I’m fitter than I’ve ever been. I hated the gym prior to the strokes like previous two strokes. And now I just love it, I find if I don’t go to the gym, my body will not shut down. But I can kind of see the right side, but I’m struggling a little bit. It also, I have primary lymphedema in my lower legs, which is really a swelling and my lymphatic channel doesn’t work properly.
Kristin Taylor 42:10
And I actually with the strokes, I set it off in my right arm as well, because I was obviously doing everything I could to try and get like the sensation back in my arm. I was getting acupuncture, I started doing boxing, so rehab for for coordination, and that triggered, unfortunately, this swelling in that arm. But yeah, apart from that, I think we just pushed really, really hard because one person said to me, when we got back to Sydney.
Kristin Taylor 42:44
Whatever you’re left with, after 12 months, that’s probably going to be permanent. So that 12 months is crucial. And then another family friend who had experienced a stroke, he just said, look at me. He’s like, push yourself because if you don’t use it, you’ll lose it. Like it’ll stop.
Bill Gasiamis 43:06
Not everything’s permanent. There’s a lot of reasons why people have deficits. Sometimes it’s a learned deficit, where you know, remember you said at the beginning, you said, do you want to just learn to write with your left hand, that whole entire situation, if you had gone yeah, let’s learn with my left hand, you may never have learned to write with your right hand again.
Bill Gasiamis 43:30
And that’s a learned experience, that’s you expecting your hand not to work and it doesn’t, whereas other people will have the connection completely gone from that part of the brain. So that’s why they can’t write it’s a very different version of why they can’t write and it may not get better, it may retrain to some extent, but it may therefore be easier for them to just swap hands and learn how to write with the other hand.
Bill Gasiamis 44:01
The reason I asked you about what you’re left with is because I know you go to the gym, and it’s something that I’ve avoided because my left side, you describe my left side, when you described your right side, it’s exactly the same. And my left side fatigues so quickly, that if I’m pushing a barbell above my head, it feels unsafe on my left side, because my right eye wants to keep going forever and my left sides going were done after two or three reps.
Bill Gasiamis 44:33
So because it’s so uncomfortable, I’ve always got to overthink it. I just got sick of I said stuff that I’m not doing that and of course I want to benchpress or anything like that. Now I’ll use you know machines that are you know, electronic sort of assisted machines, the ones that are not free weights. And I noticed in on Instagram on your very lot most recent posts, you’ve got a strap around your right wrist holding the row bar. Is that because you can’t grasp it properly? Why do you have the strap?
Kristin Taylor 45:13
I use straps because I feel my wrist on this side just isn’t as strong. And it will often I don’t know whether it’s because of my vision too, as well. I do have to be really careful with my right arm because it will often it will often flare out. And I have to be really mindful of that or get someone to help me at the gym. But I mean, I’ve Yeah, absolutely where myself with that.
Kristin Taylor 45:48
I’ve worked very, very closely with a personal trainer, after my rehab and everything like that, even last year, I was working with another personal trainer who’s become a best friend. And we used to do three sessions a week, and yeah, and I’m always I need to be in front of a mirror. I’m very specific with how I train.
Bill Gasiamis 46:12
And look at your form. Yeah, is that why?
Kristin Taylor 46:15
Yeah, cuz I’ve got the vision missing. If I’m doing any weights or anything, I can’t see my right arm as soon as it goes out of there. So I’m always I need a mirror in front of me. Yeah, I’m very things on like, my right side, like lunges and everything like that I’m very off balance. And that becomes frustrating. But that’s something that’s a goal of mine this year to kind of push her that and yeah, get on top of that.
Not “Looking” Like You’ve Had A Stroke
Bill Gasiamis 46:46
I imagine like, when you look at your Insta, it’s very inspiring, by the way, the fact that you’ve overcome all of that stuff, you’re competing in bodybuilding competitions, you can tell the amount of work that you’ve put in, but and I look at those pictures and I’m like, that’s one healthy looking person.
Bill Gasiamis 47:07
Is there situations where people look at you, and then you are healthy, there’s no doubt about it, and look at you and then go, like, stroke? What do you mean, like, you look fine? Do you get that you get that part of the conversation where people just can’t wrap their heads around? How somebody that looks like you is in the shape that you are, can be stroke affected?
Kristin Taylor 47:35
Yeah and you get I think the biggest question is like, what do you mean a stroke like an actual, like full blown stroke or like, just a, like a TIA or? And I’m like, No, I have photos to prove that two massive clots in my brain. Like I still like even doctors. Doctors are fascinated by it, which was quite frustrating when I was younger, because you were like a guinea pig and everyone would just get so excited to be working with this like person.
Kristin Taylor 48:05
But like I’ll still get doctors that will make a joke and be like, What have you done in your like previous life to like, get handed these cards and everything but yeah, everybody I think as soon as you say stroke victim, they expect someone with a droopy face like everything like that. They just Yeah, yeah, so no, it does. Yeah, definitely shocks people.
Bill Gasiamis 48:32
They can’t connect the dots, some in some of the outfits you’re you’re getting ready to go out with your friends or whatever you’re probably at a party. Nobody at a party would be able to tell that you’re living with the right side feeling the way that it feels nobody would have a clue whatsoever.
Bill Gasiamis 48:52
It’s the invisible part of stroke. That’s the sometimes frustrating and challenging for people. Do you like sometimes get frustrated about the fact that you might be having a bad day but you don’t look like somebody who’s unwell or gone through?
Kristin Taylor 49:11
I think that’s the hardest thing or I’m very confident very social and everything like that. But then I think that was the hardest part of the stroke people not being able to see what is going on and I do get I can get quite awkward in a social atmosphere, especially with the vision so until I know people and feel comfortable like if we’re going to a restaurant or something I will say can I just sit at the end of the table where the wall is?
Kristin Taylor 49:50
Because otherwise I feel rude because I’m constantly turning my head to talk to people if a way that comes up on my right side I get really awkward if I haven’t been able to see them. Where that can be quite frustrating. But yeah, in the beginning, that was I had a lot of anxiety around that. And I actually, to the point just pulled myself back, I thought I was ready to go out and socialize.
Kristin Taylor 50:16
And I just had a few bad experiences where I’ve just put myself back into my shell went home and cried and everything my family was like, it’s okay, pull yourself together, like, tomorrow’s a new day. And yeah, but now it’s just we make jokes about it. Like I’ve once I get to know people, I tell them I’m like, you know, you can pull faces on my right side. I don’t even see you when you’re there and everything like that. But yeah, it can become quite frustrating sometimes. But yeah, especially if you run into things if you don’t know they’re there. But I mean, if we don’t laugh, we cry, right?
Bill Gasiamis 50:56
Running into things would be an interesting situation. I have my vision, I still run into things a lot, because sometimes I just can’t tell. I can’t judge the distance between, say, my shoulder and the doorframe. And if I’ve had a big day, and I’m tired, I’ll bw closer to the doorframe than I thought I was and a whack. And it’s like, oh, well, there’s a doorframe again. So totally appreciate that. I know what that what that’s like, with the vision thing. Does that mean that you’re unable to drive? Have you been able to get your license as a result of vision loss?
Kristin Taylor 51:36
No. So what I think you have to be in a certain vision field, and I’m okay, because I’ve still got quite a lot. It’s just that where I felt was more and it was the complete right side. And I wouldn’t be able to, so very, very grateful for that.
Bill Gasiamis 51:58
Yeah. It’s been nine years, those friends that were on that trip with you. Do you still see them? Do you keep in touch?
Kristin Taylor 52:08
The one that was there pretty much the whole time. I’m still extremely close with her. But unfortunately, I Yeah. outgrew? I think the other ones. Yeah.
Bill Gasiamis 52:21
Yeah. Well, that happens. Those types of trips. Tend to yeah, definitely be that way. Anyway, it’s a good reason to get together with those people and travel because everyone wants to travel so often, people outgrow each other. That’s pretty cool. But it’s so great to have this other friend that you’re still there after all that time. How important is that relationship?
Kristin Taylor 52:48
Yeah, yeah. No, very, very important. Yeah. And she’s like, She’s literally my number one supporter. She’s, my first bodybuilding comp was up in Queensland. She was there, but she’s just amazing. And yeah, obviously, it’s very special bond there.
Bill Gasiamis 53:09
Yeah. How did you go in the competition? Did you finish where you want it? Or does it even matter?
Kristin Taylor 53:16
Yeah, no, I did. Yeah, I was extremely. I think my first one I came 2nd, 3rd, and 5th and then the one that I did last year, I brought home my gold medals got three golds. One 2nd. And then another show. I got three 2nds. One, 4th. So this year, keep pushing and hopefully bring those golds home again.
Bill Gasiamis 53:42
Wow, that’s pretty cool. And what are they judging? are they judging? What do they judge at bodybuilding competitions?
Kristin Taylor 53:52
Oh, they judge everything. They judge your overall physique, they judge symmetry which is obviously a big thing for me because obviously my right side years ago, was completely different to my left side, even like my butt cheek on my right side would used to sit down like that. So and we had to do a lot of one sided things to get that to catch up to my left side that they go off everything they go up your bikini, your stage performance, your, everything whole shebang.
Bill Gasiamis 54:31
I’m very curious to understand what you said about the symmetry because my left is my weakest arm anyway. But it now does look, you know, people paying attention. It does look different to my right arm. So does my left leg. They kind of a bit leaner. I suppose. That’s the only way to describe it. How hard was it to get your right side to be symmetrical or as close to your other side as possible, because that’s a big job. Because it’s the side, that’s the weakest. And you have to work it the most.
Kristin Taylor 55:15
Again, just that initial year, we just worked extremely, extremely hard, and just really, really focused on that. But now to the point, I almost concentrate so much on my right side. I’m doing a lot better than what I think to the point I ignore, my left side, which is my good side by coach last year used to always say, Stop concentrating on your right side so much is actually doing so well. And you’re not focusing, you’re starting to neglect the left side. So yeah, yeah, no, I guess like everyone used to say, like muscle memory. It’s there. You’ve just got to use it. You’ve got to activate it. And yeah, if you use all those muscles will reconnects themselves.
Bill Gasiamis 56:10
I love that because I’ve had a lot of conversations with people on podcasts. Now, we’ve never really spoken about that before. We’ve never really touched on the asymmetry of one side to the other, except in one of the interviews that I did with a powerlifting stroke survivor, an amazing lady.
Bill Gasiamis 56:37
I’m going to bring it up now. So for people listening and watching, I’m going to recoveryafterstroke.com/episodes. All the episodes are listed from one to 233 at the moment. This is going to be Episode 235, I think. And the person who I interviewed, it’s Kelly Studebaker, and she has hemiplegia so her I think it might be her right side doesn’t work so much. So she does powerlifting with one side of her body. So one side of her body is completely jacked. It’s massive, like double the size of your arms.
Bill Gasiamis 57:29
And the other side is just, you know, like normal regular stroke affected, not jacked. And she had a ruptured arteriovenous malformation or brain hemorrhage. And I think she was only aged 11. So in her adult life is when she decided to become a powerlifter. And it was again, she wasn’t meant to be doing powerlifting. And nobody ever sees you as a possibility of being a powerlifter, and she’s just gone are stuffed, I’m going to be a powerlifter.
Bill Gasiamis 57:38
And she is and the photo that I’ve got on the episode thumbnail. You just see she’s lifting a weight, it’s on an angle, and you just say the ripped shoulder, bicep and tricep and it’s just it’s such a powerful image. I love it. I love sharing that story of Kelly. She was on episode 106. Man I get really excited when I hear people like yourself, overcome the trauma, overcome all of the hard stuff and then achieve something that you’re not meant to achieve.
Achieving The “Impossible”Bill Gasiamis 58:51
And Kelly is one of those people and so every other person I’ve interviewed on the podcast, I mean, they’re the same. And that’s that’s what I love about getting people on the podcasts because they were you guys do for me is you prove over and over and over again to people who are early on in this journey, that we can overcome stuff we can get better.
Bill Gasiamis 59:13
We can do a lot with our deficits. And we can overcome a lot of the deficits even though they don’t leave us you know, we can leave them behind. So it’s just really cool. Yeah, as you could tell, I get really excited. I just love it. So what happened with work? Are you still employed in the same role you’re in or has it changed? Have you moved on what’s going on with that now?
Kristin Taylor 59:44
Originally I went back. We just obviously slowly introduced me back into work and then yeah, I ended up working with the really challenging kids again and the ones that would always have tantrums and stuff like that like, but in saying that my patience, and my understanding for the children with autism was just out of this world, because I was like I could understand their frustration, like with writing, and everything like that.
Kristin Taylor 1:00:22
And it just made me love that job so much more. But I ended up, I did leave that job. But I was in that for 12 years working at the same school for seven years, then went on and did program managing for before and after school care. And now I manage a respite home for people with disabilities that come and stay for short term accommodation.
Kristin Taylor 1:00:50
And I just, I just love it and love helping people. And yeah, and quite a few of my clients, you know, they have like, they’ve got other things going on, but a few of them have had strokes. So we sit down, and we have a chat. And yeah, talk about all that. And it’s just, it’s nice to be able to do that profession and be able to connect with people as well, and just have that understanding.
Bill Gasiamis 1:01:20
You really relate to them in a way that non stroke survivor can’t relate to, and we never want them to right? You really understand exactly what it is. They’re going through. And they would feel a lot better being in an environment with somebody who understands them to that extent, because most people don’t understand that they don’t really get it.
Bill Gasiamis 1:01:48
It’s giving you that insight to be able to understand frustration about what an autistic child might be experiencing. With writing or with expressing themselves. It’s just so cool that you get that understanding, and it makes you better at your job.
Kristin Taylor 1:02:10
Yeah, yeah. Like I wouldn’t change it for the world. I absolutely love it.
Bill Gasiamis 1:02:16
Congratulations. I really love the way that you’ve evolved and overcome a lot of your challenges. When’s the next competition?
Kristin Taylor 1:02:27
It’ll be near the end of September so I’m competing.
Bill Gasiamis 1:02:36
And then are you training for that? The entire time? And then does this sort of training take a more serious sort of turn just before competition? How do you prepare for a competition like that?
Kristin Taylor 1:02:56
So right now, we’re technically in the building/the bulking phase. So we’ll try and increase my food as much as we can try and build as much lean muscle as we can. And then usually anywhere from about 20 to 15 weeks out from your competition, you start cutting calories and stripping back that body fat percentage, which that’s when Yeah, the mentor.
Kristin Taylor 1:03:27
Stage comes into place. But yeah, yeah. And then you have to after the competition, you reverse out of it. And you have to slowly increase your calories and everything and then you go back into a building phase to build more muscle and.
Post-Stroke And Training DietBill Gasiamis 1:03:45
Wow. What is the thing the one food that you miss the most when you’re going into the calorie deficit stage?
Kristin Taylor 1:03:54
I love Krispy Kreme Doughnuts original glazed absolutely obsessed. Like they just ordered Oh, my sister always goes oh my god, here you again. And I’m like, No, they just melt in your mouth. And I just Yeah, I love them.
Bill Gasiamis 1:04:17
Fair enough. They probably the details delicious. I know exactly what you mean, they’re kind of plain and amazing and fabulous at the same time. I can see it. I can see the mental struggle when you have to go off them. How many would you eat in the year leading up to them and then do you go cold turkey on them. It’s just sounds like you have to start. It sounds as serious as stopping smoking or drinking or stopping alcohol.
Kristin Taylor 1:04:47
Yeah. When you’re when you’re eating prep and you’re in the cutting phase. It’s very, very straight to the point. I would go if I go out with friends for dinner. I’ll be sitting there at Kmart container of food it’s no drinking No, like, you’re Yeah 100% I have to track all your food to a tee you’re Yeah, you’re mentally exhausted.
Kristin Taylor 1:05:15
We laugh about it because you actually you get prep brain where you just, your body’s eating in starvation mode is firing because you’re you’re burning a lot more calories than your intake and yeah, but I guess it’s a sport and yeah, people would call us bodybuilders crazy. But yeah, I think you have to be a different breed to do it, but we just love it.
Bill Gasiamis 1:05:41
I agree. And do you get hangry? Hungry and angry at the same time?
Kristin Taylor 1:05:46
Very, very hangry. You get yery, very hangry.
Bill Gasiamis 1:05:55
Wow. Hey, thank you so much for being on the podcast. I really appreciate it. Thanks for sharing your story. I think it’s gonna make a big, it’s gonna help a lot of people listening, feel okay about the situation that they’re finding themselves in and overcoming that situation and then doing amazing things.
Bill Gasiamis 1:06:13
9, 10 years down the road, and maybe even further. I really appreciate it and it’s so nice to talk to a fellow Aussie every so often because because there’s less of us on the planet. There’s not so many who I’ve been able to get on the podcast. I truly love it. And I’m just so grateful that we could connect and that you’re willing to be on the show.
Kristin Taylor 1:06:38
Definitely. Thank you so much for having me. It’s been great. Yeah, it was a wonderful experience I’m glad I could share my stories.
Bill Gasiamis 1:06:47
Well, thanks for joining us on today’s episode to learn more about my guests including links to their social media, and other pages and to download a full transcript of the entire interview. Please go to recoveryafterstroke.com/episodes. If you’d like to support this podcast, the best way to do that is to leave a five-star review, and a few words about what the show means to you on iTunes, and Spotify.
Bill Gasiamis 1:07:11
If you’re watching on YouTube, comment below the video, like the episodes and to get notifications of future episodes. Subscribe to the show. Sharing the show with family and friends on social media will make it possible for people who may need this type of content to find that easier. And that might make a massive difference to someone that is on the road to recovery after their own experience with stroke.
Bill Gasiamis 1:07:32
If you are a stroke survivor with a story to share about your experience, come and join me on the show. The interviews are not scripted, you do not have to plan for them. All you need to do to qualify as be a stroke survivor or care for someone who is a stroke survivor or you are one of the fabulous people that help stroke survivors on the road to recovery just go to recoveryafterstroke.com/contact.
Bill Gasiamis 1:07:55
Fill out the contact form and as soon as I receive your request I will respond with more details on how you can choose a time that works for you and me to meet over zoom. Thanks again for being here and listening. I really appreciate you see you on the next episode.
Intro 1:08:09
Importantly, we present many podcast designed to give you an insight and understanding into the experiences of other individuals opinions and treatments. Protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.
Intro 1:08:26
All content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis, the content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice the information is general and may not be suitable for your personal injuries, circumstances or health objectives.
Intro 1:08:54
Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional.
Intro 1:09:17
If you are experiencing a health emergency or think you might be, call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department medical information changes constantly. While we aim to provide current quality information in our content.
Intro 1:09:34
We do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content you do so solely at your own risk. We are careful with links we provide however third party links from our website are followed at your own risk and we are not responsible for any information you find there.
The post “Stroke Abroad: A 21-Year-Old’s Journey of Survival and Recovery” Kristin Taylor appeared first on Recovery After Stroke.
Kristy Duncan experienced an ischemic stroke many years after living with Lupus at age 52. She’s on a mission to remind other lupus warriors about becoming complacent about the condition.
Highlights:
02:12 Introduction
02:53 Diagnosed With Lupus
03:49 Having The First Stroke Symptoms
06:07 What is Lupus?
09:18 Life In The Military
18:11 Learning How To Have Self Compassion
28:51 Dealing With The Physical And Emotional Stress
42:02 Recovery In And Out Of The Hospital
50:16 Kristy’s Mindset While Having A Stroke
54:01 The Pseudobulbar Affect
1:01:28 Finding Humor In A Terrible Situation
1:10:10 Dealing With Post-Stroke Deficits
Transcription:
Kristy Duncan 0:00
Because of my APS, they told me that I was not a candidate for any type of clot buster. But while I was in the ER, I had full bodily functions, as a matter of fact, they let me get out of bed and walk down the hall to the restroom when I had to go unattended.
Kristy Duncan 0:21
But then my blood pressure actually started to drop. So then they did another scan. And then that’s when they saw that there was starting to be some brain tissue death. And then that’s when I couldn’t do the finger touches anymore. And then I started to have problems I couldn’t raise my arms on my left side.
Intro 0:45
This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.
Bill Gasiamis 0:58
Hello, and welcome back to the recovery after stroke podcast. This is episode 234. And before I get started with the rest of the show, I would like to give a shout-out to all the people who reach out and let me know how helpful it has been for them to come across the podcast.
Bill Gasiamis 1:15
Sometimes it’s the first place they discover after they themselves or their loved ones experienced a stroke. Not only that this is a shout-out to all my guests so far as well and the ones to come, because without their stories and willingness to share them.
Bill Gasiamis 1:31
This podcast doesn’t exist. Just this morning, I woke up to an email from Naomi, who told me about her husband who is a physician that experienced a stroke just 11 days ago. And since then she has found comfort in the interviews.
Bill Gasiamis 1:49
And it has helped her somehow deal with all of the unknowns that have come their way. So thanks again to all my guests and to all my listeners, you are helping me create this beautiful tool and it has come from such a terrible time in my life. And I’m forever grateful for how things have turned out and for everyone that is helping me to do what I love.
Introduction – Kristy Duncan
Bill Gasiamis 2:12
So thank you. Now my guest today is Kristy Duncan who is living with two autoimmune conditions that increase the risk of stroke. They are lupus and antiphospholipid syndrome. Kristy experienced her stroke aged 52 and joins me to help raise awareness in the lupus community and encourage others living with the condition to be more proactive, decreasing the risk factors that may cause lupus to generate blood clots. Kristy Duncan, welcome to the podcast.
Kristy Duncan 2:47
Thank you so much for having me.
Bill Gasiamis 2:49
It’s my pleasure. Tell me a little bit about what happened to you.
Diagnosed With LupusKristy Duncan 2:53
Well, it actually started a long time ago, I have lupus. And that was diagnosed in 1994 with my first life-flight I was in the military and I started having chest pains at the tender age of 23. And they couldn’t figure out what was wrong with me.
Kristy Duncan 3:18
And it turned out that the sack around my heart was filling with fluid and crushing my heart. So they had to send me via medivac to a better hospital to do emergency heart surgery. So that was in 1994. So I’ve had lupus for a long time. And unfortunately, kind of lost sight of the stroke risk and the blood clot risk. And so did my doctors unfortunately.
Having The First Stroke Symptoms
Kristy Duncan 3:49
So that in November of 2021 it was veteran day of all things which I find kind of ironic, since all of this happened to me when I was in the military. My husband and I decided to go fishing and hiking. And so we were a couple hours from home is beautiful area.
Kristy Duncan 4:14
And as a matter of fact, an hour before I had the stroke symptoms start we were literally standing on top of a waterfall, looking down over the mountain. And thankfully it didn’t happen at that moment, got back in the car and drove to a little stream and I was filming my husband catch some fish, got into the car, sat down.
Kristy Duncan 4:38
The first thing that hit me and it still kind of bothers my husband to this day. If I get a bad case of hiccups. I guess hiccups can be a symptom sometimes in women, long duration of hiccups. So I had really bad hiccups that won’t stop.
Kristy Duncan 4:56
And I guess I just wasn’t acting right, I’m not really sure he just knew something was wrong. And I don’t know if I was slurring to him or what it was. But he drove down to a little store. They got a local EMT that looked like he was about 15 years old.
Kristy Duncan 5:17
And he came and asked some questions. And he called an ambulance. And then the ambulance, they came and asked me some questions and asked me to squeeze their fingers and looked at me. And it was when I was talking to them then I started hearing that I was slurring, and I sounded like I was drunk.
Kristy Duncan 5:39
And then they called the helicopter that landed in a field on top of this mountainside. And that was my second life flight, and flew me to the hospital, where they told me I had had a stroke. And that was a very scary time, still during COVID.
Bill Gasiamis 6:03
Tell me, what is lupus exactly?
What is Lupus?Kristy Duncan 6:05
Lupus is an autoimmune disorder where your body creates antibodies that attack primarily with lupus, it’s collagen, which is pretty much in every organ in your body. And I have the systemic form of it. Systemic lupus erythematosus.
Kristy Duncan 6:28
And I also have another autoimmune disorder, which is what actually caused the clotting, which is called antiphospholipid syndrome, where my body creates antibodies that attack phospholipids, which are on cell walls and in blood vessels. So basically my own body turned against me.
Bill Gasiamis 6:54
Yeah, do the two conditions often go together lupus and antiphospholipid syndrome?
Kristy Duncan 7:04
I think it’s about 50% of lupus patients also have APS. But you can have APS as a primary autoimmune disorder as well.
Bill Gasiamis 7:21
Without the lupus.
Kristy Duncan 7:24
Right, but lupus in and of itself puts you at a very high risk for blood clots as it is four times higher than the average population is matter of fact.
Bill Gasiamis 7:35
What would be the regular way to manage the lupus condition? For people who have it? So I’ve heard of a lot of people who have lupus, they live a long time. There’s no real issue in their life most of the time, but every once in a while, you hear that somebody that who has lupus has had a stroke. So in the time leading up to your stroke, what was the way that you’re managing those conditions, and did that lapse did that management lapse and therefore cause the stroke?
Kristy Duncan 8:17
I would say that biggest thing about lupus is it’s an inflammatory type of disorder. So anything that you can do to manage inflammation, primarily stress. And there are medications like hydroxychloroquine is a very popular medication used to treat lupus.
Kristy Duncan 8:43
And I honestly should have been on blood thinners the whole time aspirin or something because of having the APS on top of the lupus but I wasn’t. So general treatment is trying to keep your stress levels as low as you can and keep your weight under control blood pressure, cholesterol, the normal healthy markers like that. And It hadn’t lapsed at that time.
Kristy Duncan – Life In The MilitaryBill Gasiamis 9:18
Right. Is it easy to keep stress levels low when your job is in the military?
Kristy Duncan 9:29
Well, that’s what definitely brought it on. I attended a military school and then was active duty in the military. And yes, and what actually brought the lupus on the first flares, what they call it whenever it gets very active is a flu shot, a flu vaccination, so it triggered my immune system and then it wouldn’t turn off.
Kristy Duncan 9:58
So with the stroke. No my weight had gotten up a little bit, but I was working on getting that back down. But I was fairly active, I did yoga and exercise every day, we were hiking did a lot of that. I’m a certified health coach.
Kristy Duncan 10:17
So I watch what I eat. And I enjoy eating healthy foods and things of that nature. My cholesterol has never really been a problem, and my blood pressure was usually low and not high. But one of the things when I was researching, the risk of a stroke increases approximately every three years post diagnosis of having lupus at the risk of a blood clot anyway.
Bill Gasiamis 10:48
So it’s kind of like, as we age and go into the stroke risk category anyway, because as we age it, you know, the older you get, the more risk, you are having an ischemic stroke, more so than a hemorrhagic stroke. Then you’ve also got a condition, which is kind of bringing you into that zone, even more so than somebody who didn’t have the lupus or the antiphospholipid syndrome.
Bill Gasiamis 11:22
So, you’re gonna be at a very high risk. However, the doctor that you’re seeing, was that your long-term ongoing doctor, the one that you have been visiting for a long time? Or how do you change doctors over the years? And did perhaps the conversation about the level of concern, did it sort of ease as time went on rather than have you guys focusing on?
Kristy Duncan 11:56
I think that good question. I think that being stable for so long without having a Lupus flare, had both in the doctor’s perspective, and in my own had kind of lessened the hypervigilance. But I had literally gone to a rheumatologist the month before I had the stroke.
Kristy Duncan 12:23
And I was going through menopause. So I was taking some hormones for that, which I know can sometimes increase the risk. That doctor knew that. And he felt also because I was so stable, and all indicated that I was not in the age group to be of risk taking the hormones, but I shouldn’t have taken them. But I had taken birth control when I was younger with no issue. So again, a little bit of that. Overconfidence from a long period of time with no active disease.
Bill Gasiamis 13:06
Yeah, when you did when you took the birth control, were you aware of the stroke risk? It sounds like you are now but did you know at the time that there was a stroke risk, and did you take that knowing that there was a stroke risk?
Kristy Duncan 13:24
I was seeing my rheumatologist who I really loved at that time really enjoyed working with him and he knew and he wasn’t concerned and he was monitoring me I think better than my more recent rheumatologist, my gynecologist also knew and had treated many women with lupus and felt that it was he had me on a formulation that was the lowest risk.
Bill Gasiamis 13:55
So it sounds like there was a lot of conversation sounds like there was a lot of questions sounds like everything that you needed to do to understand the risk factors was taken into consideration. You made informed decisions. You had a really good run, you didn’t have any conditions.
Bill Gasiamis 14:15
And it’s similar to although you had this lupus condition, it’s similar to what other people describe, you know, I was really they’ll tell you, I was really healthy. I didn’t have any issues. I ate well, I exercise, I did all the right things. And then I had a stroke and I don’t know where it came from.
Bill Gasiamis 14:31
And it’s usually a sticking point. And I’m not trying to come up with a reason why it happened or anything like that. But I’m just curious about the mindset that’s leading up to your 52nd year. And then it sounds like it was on par, it sounds like it was on the right track.
Bill Gasiamis 14:49
You guys went about doing most things. And it’s pretty common when you have insurance on your house and you’ve never had your house burned down, you kind of say, well, you know, I’ve been paying insurance for 25 years, do I really need it? Like, it’s a really interesting question that does come up, and and then some people might make the decision that they don’t need it, for example.
Bill Gasiamis 15:16
And that’s their decision, but then the protection mechanism goes away, and then you’re kind of at risk of loss, you know, a heavy loss. So that analogy, I hope it kind of gives people an understanding of the mentality of, like, I’m looking for danger, there is no danger, I can let my guard down.
Kristy Duncan 15:49
And I also trusted my doctors to keep an eye on it. And I should have been watching it better myself. And that’s part of the reason why I was really interested in being on your show, because I know I’m not the only woman out there with lupus, who will either be faced with similar decisions, or not.
Kristy Duncan 16:12
But even something as simple as a baby aspirin a day, the risk of taking the aspirin is so low, but the benefits are so high. And I had lost a friend, I worked with the Lupus Foundation and was a support group leader. And I had lost a friend in 2016 with lupus, she had a heart attack.
Kristy Duncan 16:38
And she was very young. She was 35, and then I lost another lupus facilitator in 2021, about 10 months before my stroke. She died from lupus complications, not specifically, I wasn’t informed specifically, if it was a stroke or heart attack, but I was definitely at high risk playing Russian roulette, I guess.
Bill Gasiamis 17:20
Yeah. And it sounds like you’re being a little bit hard on yourself or you have a few regrets. Is that correct? Is that accurate?
Kristy Duncan 17:31
I’m being mild I’m being well-behaved compared to how I could beat myself up over this. Yes very much so. I was very upset about it a couple of days ago.
Bill Gasiamis 17:44
And you’re upset at yourself? Is it you that you get mad at?
Kristy Duncan 17:52
Frustrated at myself at my doctor’s just the whole thing. Yes. That’s something as simple as taking an aspirin a day could have prevented this. Yes. Trusting in the medical facilities so blindly.
Learning How To Have Self CompassionBill Gasiamis 18:11
Yeah. It’s a tough one. I mean, you only gain this knowledge in hindsight, but don’t gain it. Without this crappy situation occurring, this incident occurring, and that’s the thing the shit has to hit the fan before you know it’s happened. And then you can only deal with it once it’s happened. And I would ask people that are going through something similar to you is to have self-compassion for not knowing what you didn’t know, you know, to be your own advocate now, your best advocate now.
Bill Gasiamis 18:50
And to try and moving forward, take the role that you now know, may have been the role that would have made your condition potentially stay calm and not have a flare up. And be understanding that you’re not the only one that’s in the situation that you’re in because of lupus.
Bill Gasiamis 19:20
And if you were talking to a friend of yours, who has a lupus and had the same situation occurred to them, and they were hard on themselves, how would you speak to them about their own I’m not sure if the right term is self loathing or, you know, how would you go about sort of trying to ease their suffering at that moment?
Kristy Duncan 19:50
I would definitely challenge them to forgive themselves. Like you said you don’t know what you don’t know. sometimes. And again, that’s why I’m hoping that maybe this podcast will reach. And I’m going to share it with the Lupus Foundation in the hopes that it will reach other women and spark some deeper conversations with their doctors of what their risk level is that and is there something that they can do to to mitigate that.
Bill Gasiamis 20:29
I just love that idea. What you’re doing is such an amazing thing, because it’s exactly what’s necessary. I love that what has happened in this situation is you’re automatically thinking of other people. And you’re being the one that in order to raise awareness for other people, you’ve had to go through this thing.
Bill Gasiamis 20:52
It’s such a paradox that you have to go through something so serious and so life-threatening, but what comes from it is this amazing, need to reach out and ensure the safety of others because you’re wiser for your journey, you know, more about it now than you did beforehand. And the first thing on your mind is, let me reach out to the rest of the girls and let them know what happened to me so that they could be a little more informed, prepared, mitigating more of the risks.
Bill Gasiamis 21:39
I think that’s an amazing thing, that’s fabulous. And I hope that brings you some comfort, and hope that eases you know, that other part of you who’s angry and frustrated, which is I think it’s also absolutely okay to be angry and frustrated at yourself, but it’s just not useful, it doesn’t have an outcome that’s beneficial to you, your condition, and your ongoing journey. However, I appreciate that you’re there, and that’s okay. But I hope that angry person, part of you is eased a little by this other version of you, who is the one that is the compassionate, caring one and thinking of other people.
Kristy Duncan 22:29
It does help. I became a health coach so that I could help people and I have done some videos about my journey with the stroke on my YouTube channel. And I think it will be an opportunity to leverage my experiences in the future to help others yes. Because the point of the matter is, is we listen more to people who come from a place of understanding than we do from somebody who just doesn’t know what we’re going through.
Bill Gasiamis 23:18
The doctors tend to not know what we’re going through that is one of the fantastic and strange things, because we never want them to know what we’re going through, because the only way they’re going to know that is to have had a stroke to be in our shoes. And that’s such a terrible way to know what it is that we’re going through.
Bill Gasiamis 23:41
And therefore that makes them a little disconnected from what the shell that we live in, feels like inside and how it expresses itself differently on the side where you might have your deficit for me, for example, it’s the left side, I feel completely totally different on the left side as I do to the right side.
Bill Gasiamis 24:06
And I had this conversation with a friend of mine just yesterday. And we were talking about how I don’t like exercising, I don’t enjoy the way that it makes me focus on the way that my left side feels when I’m exercising as opposed to how my “normal” right side feels.
Bill Gasiamis 24:31
And as a result, I avoid exercise because it has moved on from being exercise and enjoyable to this constant. I’m out of balance, conversation or everything’s not the same conversation. And the only exercise that I do, which I do as much as I can and I love is I ride a bike because with an electric assisted motor in the bike.
Bill Gasiamis 24:57
It makes me not have that conversation in my head. One where, my leg feels weird when it goes down as I run, or my arm feels strange, as I move it, it makes all of that noise go away. And therefore, I can just move. And try to have a conversation like that with the doctor is near impossible. That’s why I started the podcast because I needed to speak to people who understood what I was saying.
Bill Gasiamis 25:25
So I can feel understood even though my doctor who was extremely helpful, didn’t understand that part of me. I was okay with that, you start to get to the point where you’re okay with it. And then what I love about your journey so far is then you’ve become your own self-advocate, you’ve taken responsibility for the advocacy part of this situation.
Bill Gasiamis 25:53
And you’ve taken it away from the doctors who, quite frankly, if they had to be responsible for every single patient that they had, that’s a responsibility, that’s way too big a burden to carry. And I prefer that asked the stroke survivors, and the lupus warriors and all the people that are going through it, I prefer them to be their own self advocate and to be.
Bill Gasiamis 26:23
So focused and passionate about finding out what else they can get their doctors over the line with what else they can ask their doctors for help for, because doctors sometimes just don’t realize that you need additional support, they look at the charts, they look at a very brief summary of what’s going on, they may only have 10, or 15 minutes to consult with you. And they’ve got to make all these decisions in that time.
Bill Gasiamis 26:51
And I only ever became my own advocate after my first and second bleed, there was no way that I was and I use this word because it’s lack of a better word “intelligent” enough to realize that I needed to take responsibility, and be my own advocate before the stroke, because like you, even though I didn’t have lupus, even though I didn’t have an autoimmune condition, I had 37 years of why am I paying insurance for it’s not necessary, everything’s fine.
Bill Gasiamis 27:25
I could smoke, I can drink, I can eat badly, and I’ll be fine, I’ll go to work and everything will be fine. And it wasn’t and I wasn’t contributing to supporting myself, I was contributing to making myself sicker, more unwell. So I kind of have a similar story to you.
Bill Gasiamis 27:47
Even though I don’t have the diagnosed underlying cause, because I had an undiagnosed underlying cause, sitting in my head, like a time bomb just waiting to go off. And I did everything that I possibly could to make the situation of my head, I made it more likely by every cigarette I took by every alcoholic beverage that I drink, I made it more likely that that thing was going to burst.
Bill Gasiamis 28:15
So beating up on myself, thankfully, was not something that I wanted to do. And that I felt good about. And it wasn’t useful. And it didn’t achieve anything in helping me my recovery, in fact that got in the way of my recovery. So still a little bit of a rant and hopefully you’re seeing the similarities, even though I wasn’t diagnosed with a condition.
Dealing With The Physical And Emotional StressKristy Duncan 28:51
Thank you, I can appreciate that. Because we can all look back at decisions that we’ve made in our lives and realize some of them are just really bad. Like I went to a military school that I had no business being at, I didn’t belong there. I wasn’t strong enough physically or emotionally to be in that type of ultra competitive environment.
Intro 29:18
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be. You’re likely to have a lot of questions going through your mind. Like how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse, and doctors will explain things but obviously, you’ve never had a stroke before.
Intro 29:39
You probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying and head to recoveryafterstroke.com where you can download a guide that will help you.
Intro 29:57
It’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery, head to the website now, recoveryafterstroke.com and download the guide, it’s free.
Kristy Duncan 30:21
And that’s what started my hyper stressed environment that eventually led to my lupus, the physical and the emotional stresses. Because you’re right, in military, you don’t have a lot of time to de-stress.
Bill Gasiamis 30:42
Yeah, that’s a lot to bear. Especially when you’re a young kid, you know, you’re some people are teenagers, when they join the military, others in their 20s, or whatever, it’s a lot to bear you just barely coming out of being in the most oblivious time of your life, you know, when you’re a teenager, which is the best, potentially, and then you go into this other world, which I understand is necessary.
Bill Gasiamis 31:10
And it requires people to continue to be a part of, but it’s not for everybody. But how do you know that when I’ll say this, but then take it the wrong way. When you’re so young and dumb, and you haven’t lived and you don’t know about life? How do you know and until you make the wrong decision? You just don’t know.
Kristy Duncan 31:41
Right? And I mean, sometimes you just have to look at why do you make the decisions, but sometimes you can only look back with wisdom on those when you are older. And you see alternatives that you didn’t see at the time.
Bill Gasiamis 31:58
Yeah, absolutely. And then you can redirect. And that’s part of our growth is to redirect and make less of the mistakes that we made when we were younger, because we’ve already been there. And we know we don’t need to go down that path. It’s definitely how my life has got calmer and better.
Bill Gasiamis 32:18
And I hear about people who are older than me, I’m 48. So I hear about people who are older than me, who say everything’s sort of, in their later years, everything’s chill, they know exactly what they need to do. They know how they enjoy their day, they know what pastimes they’re going to occupy the time with.
Bill Gasiamis 32:37
I think what it sounds like to me is that they’ve very much realized and learned what are the things that they, if they repeat, they won’t enjoy, that won’t be beneficial, that won’t be useful, they won’t be helpful, and they just weed them all out over the years. And then by the time they get to their, you know, seven years or wherever, there’s just nothing but wise decisions and wise choices for the for many of them.
Bill Gasiamis 33:07
And I feel like that’s why, you know, these older traditions and these older communities of native people. That’s why they had the elder, who you know, was depicted as being old and gray and wrinkly, and always talking to somebody who was younger than them and sharing their wisdom or giving guidance or whatever it was, I feel like that was lost on me when I was younger.
Bill Gasiamis 33:43
But as I’ve aged, it is starting to become more apparent to me that although I want to be connected with younger people, I also really need to understand for me what the next 20 or 30 years is going to look like and how I’m going to get to be the wiser elder
Kristy Duncan 34:04
Well, I don’t have children so I’ll be honest, I struggled to relate to really much younger than I am. I can relate to the 20s and the 30s some things that I work with, but I mean, I find it easy to talk to people about anything and everything but to go back to when I was a teenager. I mean, my husband and I’ve talked about this even with music nowadays, I don’t understand modern music in any of the draw that it has, compared to when we were are younger.
Bill Gasiamis 35:01
Yeah, it’s like a different language, isn’t it?
Kristy Duncan 35:05
It is very much so.
Bill Gasiamis 35:09
Well, I’ll give away a little bit of my secrets, I was really heavily and deeply into 90s dance music really deeply in it, and I listened to it now, all the time. Some of it is timeless. So my kids have been able to appreciate it. But then I also listen to a lot of metal like Metallica. Just one example, that’s good enough, because people kind of know then what my taste is like.
Bill Gasiamis 35:46
And, then sometimes I find myself listening to classical music, because of its power, and its energy, etc. And then most recently, like you to hear some of that new version of rock, or the new versions of pop, or the new genres that are around, it’s like, literally like they are a different language and my kids one of them the older one played in a band.
Bill Gasiamis 36:17
And they played a type of music that they called punk. It was not like the punk that I recognized from the late 70s and early 80s. It was kind of next level. And you actually couldn’t work out the words. But we were forced to go along and, and take him to gigs because he was underage.
Bill Gasiamis 36:42
And he couldn’t get into some of the pubs and some of the clubs that his band was playing in. And it was a real drag being there to listen for an hour to the show before him and then perhaps even the show after him while we waited to pick him up.
Bill Gasiamis 36:58
And it never kind of took hold it never embedded, it never grew on us we loved being there. Because we enjoyed watching him. But yeah, we couldn’t relate to that. So we found another way to interact with him. And that was just to be there with him in that moment, even though we had no idea what the benefit and what the draw card was.
Bill Gasiamis 37:29
Now that being said, I shouldn’t have judged his music on whether I liked it or not, because there was enough people there to really show that they appreciated the music, and that it was a draw card. And that they did understand that. So it’s like going into a different culture. And just going I’m gonna hang out here like going to France, for example, and saying, I’m just going to hang out here for a little while.
Bill Gasiamis 37:56
And I’ll see if I can learn something I don’t know. It’s interesting. And that might be the level of my hanging out with younger people. That’s kind of the extent of it. It’s not more they don’t engage as much with me as perhaps I have. But that’s a cool experience. That’s about all I need. I just need to be able to know what goes on in that world so that if somebody asks me, I can pretend that I know about that world and get a laugh.
Kristy Duncan 38:38
Well in support your son, so I think that’s a good thing.
Bill Gasiamis 38:42
Yeah, I think so if it comes from that place, then I think it’s easy to connect with the younger community because if it comes from I’m supporting you even though I don’t understand you, I think they feel supported. And that’s enough. That’s good enough. I’m wondering, with regards to the stroke, how long did it take for you to get to hospital and then released from hospital how long did your hospital stay take and then what were you left with that you have to overcome and recover from?
Kristy Duncan 39:21
Well I don’t remember how long the helicopter ride was. It was pretty quick. And I know it was pretty because it was beautiful fall leaves flying over all of the trees. That was pretty but I was obviously worried but I was also worried about my husband and you know him getting from where we were the two plus hours or so by car to the hospital. And then I was in the hospital I think for about a week and then in rehab for about a month and the hospital was a little challenging, because I was not vaccinated. And that was contentious in the ER.
Bill Gasiamis 40:09
Oh, gosh.
Kristy Duncan 40:14
Very contentious.
Bill Gasiamis 40:18
You weren’t vaccinated for a perfectly good reason as well. So the vaccine had previously caused you a health issue.
Kristy Duncan 40:29
Yes one that had been around for a lot longer too
Bill Gasiamis 40:36
I find that so bizarre that you’re that you’re in this life threatening situation. And the biggest concern is whether somebody has been vaccinated at the time. It’s just intense. And how did that go down? What was the conversation like, what, what eventuated
Kristy Duncan 40:59
I see that you’re not vaccinated. That’s correct. Mask, why, while he’s wearing almost Greg called it the Darth Vader mask, because it was like a full black face shield kind of thing. And I said, well, because I, obviously am a blood clot risk. And so then he proceeded to tell me about all of the people with COVID that get blood clots, and, you know, try to shame me into it.
Kristy Duncan 41:34
And thankfully, it didn’t work, because I think that would have increased my risk of further strokes. But he really wouldn’t back off until my husband got there and kind of, you know, made it clear that she’s not getting the vaccine. And so then I was in the hospital for about a week.
Recovery In And Out Of The HospitalKristy Duncan 42:04
The thing that was interesting is, I also feel like, while I was in the intensive care, or the ER, because of my APS, they told me that I was not a candidate for any type of clot buster. But while I was in the ER, I had full bodily functions, as a matter of fact, they let me get out of bed and walk down the hall to the restroom when I had to go unattended.
Kristy Duncan 42:38
But then, my blood pressure actually started to drop. So then they did another scan and then that’s when they saw that there was starting to be some brain tissue death. And then that’s when I couldn’t do the finger touches anymore. And then I started to have problems. I couldn’t raise my arm on my left side.
Kristy Duncan 43:00
And so then, I went into I was in a rehab facility for about a month. And that was all during the holidays, from the day after Thanksgiving, I believed to the 23rd of December. And my rehab, I have to say, I really appreciate the facility and they did a lot for me and they had me walking with an AFO by the time I left, I did not need a walker, or anything like that.
Kristy Duncan 43:45
But I still have complete left arm paralysis. While I’ve got a little bit of shoulder, I can shrug a little bit and pull my arm a little bit. And my knee and ankle are very stubborn and resistant. And the challenge that happened was actually after I got out of rehab and was doing outpatient therapy, I did so well during outpatient therapy that they released me very quickly. And I’ve been doing all my rehab on my own from YouTube videos now.
Kristy Duncan 44:20
So I found some excellent therapists on YouTube, and I’m reading Anat’s book. And what’s very interesting is one of the therapists was using attenuation. One of her principles, he was using that in his video before I even knew what it was from reading the book. But I can see that using those videos and finding therapists and having a variety of different therapists that I’m working with and exercises is actually not a bad thing.
Kristy Duncan 45:00
And I think I’m getting, I mean, my left side is definitely getting stronger. But my club as my husband calls my left arm, we deal with a lot of things with humor, I have a very sarcastic sense of humor, so much so that the doctor in the rehab facility asked me if I was always like that, or if it came on after the stroke. I’m like, No, I’ve always been this sarcastic. So that’s helping, but I’ve been pretty much doing everything of that rehabilitation on my own.
Bill Gasiamis 45:45
Yeah. With regards to your diet now, and your understanding of the fact that your conditions are inflammatory. And what you need to do is, support them and create an anti-inflammatory state in your body. Do you have a different diet? Is there something that you’re doing that’s changed the way that you consume food and what you might avoid? And what you have included?
Kristy Duncan 46:19
Honestly, no, I lost 30 pounds from my stroke to getting out of rehab. And I’ve lost another two in the last month or so. I haven’t really changed what I eat. And I actually, I’ll be very frank with you. I don’t eat as well as I should I have a bit of a sweet tooth.
Kristy Duncan 46:44
So I still eat more sweets than I should. I have an occasional adult beverage not frequent. I’ve never been a frequent drinker. And I’ve never smoked. I think the biggest thing that I miss is I can’t do yoga and other types of exercises that I actually enjoyed. And that were very stress relieving to me.
Bill Gasiamis 47:16
So as a result of the condition that you’re in, you can’t do yoga, because is this spasticity in your muscles? Is that because you can’t get into well, some of those because of your arm, some of those moves won’t be possible?
Kristy Duncan 47:36
Right, I have yet to try a chair yoga I’m looking for some chair yoga, to see if those might work. I’m actually doing a retreat with two of my college roommates in June. And it’s a lot of breath-work, and yoga. But I’m going to do that from a chair because I know I’m not going to be able to get up and down off the floor comfortably.
Kristy Duncan 48:11
I may be able to do it in a limited space. I mean, I have fallen one time and I had to get myself up. So I know I can do it. But it’s not a comfortable type of situation. And with the one arm, it actually puts a lot of stress. I don’t know if you or any other patients have mentioned just about how it puts a lot of stress on the functioning side to make up for it.
Bill Gasiamis 48:37
Yeah. For me, it tightens my right side muscles and it gives them it over compensates my right hand side has to overcompensate to kind of keep the left hand side up and upright and not from tipping us over. So there’s always that happening. Were you in active duty at all during your time as a person in the military?
Kristy Duncan 49:14
Yes. When the lupus first flared and I had the flu shot, I was active duty. Yes. And as a matter of fact, that was another interesting situation. I was very sick having chest pains and spiking fevers. And basically, they couldn’t figure out what it was. So they just sent me home.
Kristy Duncan 49:40
They kept sending me home until one time. I just was like I’m not going home until you figure this out. And then they did a chest x-ray. And that’s when they determined I had pericarditis and my heart was grossly enlarged due to the sack around the heart.
Bill Gasiamis 50:00
And recently, have you still been involved and employed in the military? Or has that career ended?
Kristy Duncan 50:09
No I was medically retired after the lupus diagnosis.
Kristy Duncan’s Mindset While Having A StrokeBill Gasiamis 50:16
Okay. I’m asking because I’m wondering, was your training at all, did that come into play? Did that kick in, when you found yourself in a situation where you’re 52, you’re needing to be medivaced out of the place that you were with your husband? Do you have a mindset, some kind of training that you call on or you recall that you start to go through the motions of or that you apply to this dangerous situation that you’re finding yourself in?
Kristy Duncan 50:58
Just more of general mindfulness and breathing exercises that I had learned from yoga and and other mindfulness type exercises to help with stress management, yes. To the point where I had to when I was in the ER, and my blood pressure started to go down, I had to stop, not allow myself to get overwrought. But I had to stop the deep breathing as much so that my blood pressure would not keep going down.
Kristy Duncan 51:34
Because then it wasn’t allowing all the capillaries in other areas around the clot to get the blood flow. So I mean, they were literally tilting my bed at one point, putting my head lower, along with giving me medications to raise my blood pressure. But a lot of the mindfulness type exercises and things I had done, I had just were self taught to learn how to just keep stress levels manageable to keep my lupus calm.
Bill Gasiamis 52:15
Yeah, well, that’s definitely a great thing to do. Keep it as calm as possible in the most difficult times, especially when you don’t exactly know what’s going on. That’s probably the best thing is just to keep calm and to try and manage your physiological response to this situation that’s happening in your head. I think that’s a great thing. Your husband, how’s he going? How’s he managing this whole journey with you?
Kristy Duncan 52:43
Oh, he’s outstanding. I mean, he, he’s taken over. So many things that I used to do, shopping, animal care, taking the animals to the vet. And then just being a positive humor for me, keeping me going. We have this thing where because I do have a tendency to get emotional sometimes. And that is a little bit more post-stroke.
Kristy Duncan 53:17
But I’ve always been one that would. I mean, I used to tear up watching Little House on the Prairie. So we joke and we call whenever I start getting teary-eyed, we call that either squishing or getting mushy. And he told me I was getting nervous about talking with you.
Kristy Duncan 53:17
And he’s like, why are you getting nervous? It’s just a chat. And I said, that’s exactly what he told me. Just chatting over coffee. And he said, Yeah, except you don’t want to be drinking coffee or you have to keep getting up and go in the bathroom. But he’s like, don’t you dare cry. And I’m like, I’m not gonna cry.
The Pseudobulbar AffectBill Gasiamis 53:57
I’m being mushy, and that I think does come with a territory. I have you heard of the pseudobulbar affect?
Kristy Duncan 54:12
No.
Bill Gasiamis 54:13
Okay. It is a condition that ails stroke survivors and people who have neurological conditions where uncontrollable crying and or uncontrollable laughter is one of the side effects of having a neurological challenge I went through that and uncontrollable crying would happen at the drop of a hat. And let me tell you if the kitty cat walking down the road tripped over the grass it would be enough to get me crying like a madman just for no reason in the middle of everywhere.
Bill Gasiamis 54:54
I’ve spoken on stage and while in the middle of speaking on stage I find myself bursting into tears. But you know what happens, I thought it was going to be a negative thing. But then I’ve got the audience wrapped around my little finger. And I’ve just sucked them all in into feeling sorry for me into becoming really emotional, you know, they get out of their head, and they connect with their body.
Bill Gasiamis 55:22
And it’s a real lovely opportunity to sort of be a man be on stage in front of potentially a few 100 people and cry. And then, instead of that being a negative, it actually works in my favor. And now I own the room. And everybody’s paying attention, everybody’s listening.
Kristy Duncan 55:44
I’m an ugly crier though. So it’s just not a good thing for me.
Bill Gasiamis 55:53
Okay, so that complicates things a little bit, if you’re an ugly crier, but I totally get where you’re going. And the pseudobulbar affect is something that when people hear that, that is a thing, they do feel a little better about it, because I know that some men, and I speak for men, because I’m a man, the sun, men do have an issue with showing emotion and expressing crying.
Bill Gasiamis 56:20
And it becomes really challenging for them to find themselves in a situation where they’re being so vulnerable. It’s actually a positive thing. I feel like it’s a release of something that needs to come out that is getting in the way of recovery. So when it happens now, for me, it’s like, well, you know, that’s okay. And I would now probably cry over a Little House on the Prairie. Where I didn’t when was a younger kid watching it, I might cry now. I mean, there’s so many touching moments in that show.
Kristy Duncan 56:58
Well, I’ll have to let them know that it is quite normal. We are still very, more geared towards humor and being funny to help cope with a lot of things. So having animals helps with that. So we’re always finding something to laugh at them about.
Bill Gasiamis 57:21
Yeah. And I like the fact that you have humor. And if you can find humor in your situation, I certainly did find humor in my situation, one of the most humorous moments, which was terrifying and humorous, at the same time, was when I was going into hospital to have my last appointment before brain surgery.
Bill Gasiamis 57:41
So they go in, they check you out. They make sure all your vitals are where they need to be and all that stuff. And then they brought you in for surgery, it was literally going to be three or four days later. And I was in the hospital for probably a maybe a couple of hours. And on the way home, I started to get numbness on my left side, it came on really dramatically more dramatically than it had ever before.
Bill Gasiamis 57:44
My vision went, and I had a strange sensation on my face that was more dramatic than before. And I was told, and I went back to the ER, and I saw one of the nurses then I said to them, listen, I’ve just been upstairs, I’m getting ready for brain surgery, this kind of stuff. And I’m having a situation and not explaining it to them properly enough. And then not necessarily being certain about my history.
Bill Gasiamis 58:38
They just taught me to sit down and wait in the emergency room waiting area. So I did, and next to me was sitting a child who was probably autistic. And he had been to the bathroom and he was sort of sitting on the chair right next to me. And we were sharing the elbow rest.
Bill Gasiamis 59:02
And his mum asked him, did you go to the toilet? And he said, Yeah. And then she asked him, did you wash your hands? And he didn’t respond and that was enough of a response for the mum to know that he didn’t. And perhaps his hands weren’t dirty in any way. But she made a scene and made a point of it to him.
Bill Gasiamis 59:33
And I was holding the same arm chair that he was holding. So immediately when I’m going through the most terrible situation of being really concerned about potentially another bleed happening right there and now all that went away and the only thing I was worried about was did he come out of the toilet with clean hands and do I need to get up and go and wash my hands.
Bill Gasiamis 59:59
In the most terrible circumstances, the only thing that I was concerned about was whether or not I touched something I didn’t want to have touched. I found humor in that moment later after it happened we were talking about it humorously.
Bill Gasiamis 1:00:17
And that just goes to show that you can find something humorous in a situation, even though it’s potentially life threatening, and risky. And who knows what the animals are another thing that I absolutely love to hear people share about because they bring so much comfort and joy to people. How many animals do you have? What type of animals?
Kristy Duncan 1:00:51
Many. We have two cats. We could probably apply for an Animal Rescue because they just show up at our house and we don’t turn them away. But yes, we have too many. And while I was in rehab, my husband would send me pictures of them doing various things to help cheer me up and saying, you know, hurry home mom, and you know, little captions like that.
Finding Humor In A Terrible Situation – Kristy DuncanKristy Duncan 1:01:28
My funny stories, I think some of them are to make fun of myself, and some are just yes, they do help with the situation. One of them I laugh about now, but I later found out that if I had actually hit the nurse, it would have been a felony. But I don’t know if you’ve ever had them do the pain response to try to get you?
Kristy Duncan 1:01:55
Well, I, they were doing neurological checks on me like every two hours. And this one nurse came in, and she had the very hard artificial acrylic nails. And she kept pinching the back of my left arm, and I finally had to tell her, I said, you need to stop doing that.
Kristy Duncan 1:02:14
Because my right arm works, and I’m gonna slap you if you do that to me again. And she, you know, explain why and I said, I appreciate why you’re doing it. But I am telling you, it hurts and you need to stop. And she did, thankfully. I mean, I had bruises on the back of my arm from the sharp little fingernails.
Bill Gasiamis 1:02:43
She didn’t realize her strength?
Kristy Duncan 1:02:46
Right. And another time was just the funny series of events when my husband was gone one day, and it was just, I just realized how funny it was when I looked back at it. So I recorded a little audio and I shared it with some of my work friends, to kind of bring them up to speed and to share a little bit of, you know, a day in the life and I call it at lunchtime adventures.
Kristy Duncan 1:03:16
And they all just thought it was hilarious. Then another time. I fell underneath the house. And it was very minor. But I just kind of I did another recording of it and just kind of walked him through in slow motion, how it happens, like the placement of my legs and how I was leaning forward in a lunge. And my foot slipped and then I went down on my hands and I was wearing a raincoat.
Kristy Duncan 1:03:52
So then my elbow slipped and then I’m literally facedown in the mulch underneath the house, hoping that none of the cats had used the bathroom in the mulch so that I didn’t have my face. And I mean, I just had to laugh about it. And just I’m laying there, my face in the mulch, both arms straight eagle, just laying there. And all I got was a tiny little scratch from my glasses being pushed up on my forehead. So very, very blessed but just have to look at it from a humorous perspective.
Bill Gasiamis 1:03:53
Absolutely. Even nine years after my first incident, the falling over thing is something that happens to me. So this is a real dramatic situation. We’ve gone for a drive to see some family across one of the borders. I live in Victoria and we went to New South Wales, and it’s 1000 kilometers. And we drove there. We saw them and on the way back we’re driving and I’m looking in the rear vision mirror up, and I see this car with a trailer on the back of it.
Bill Gasiamis 1:05:04
It rolled, it tumbled and tumbled and tumbled and stopped on the freeway pulled over and expected to save the worst thing when I went went to that car. So I’ve run to the car, I’ve got there, and there’s no one in the car. And we were doing 100 kilometers an hour at the time, which is 60 mile. And the guy whose car, it was who rolled in the time that I’ve stopped my car, we’re talking about not even 30 seconds.
Bill Gasiamis 1:05:49
And the time that I ran back to his car to check up on him and everyone else was stopping as well. He was already on the phone calling a friend of his saying, I’ve stuffed up the car, come and get us out of here, you know, come and help us. And then I was looking around for a passenger was there any passengers and there was a passenger. And the passenger was telling me everything’s cool, we’re all right, nothing to worry about.
Bill Gasiamis 1:06:19
And I’m like, Should I bring an ambulance should I call for help. No we’re good, we’re all good. And it was just absolutely shocking. And it was the exact opposite to what I wanted to see. And it was amazing, it was fantastic. So it literally took me about another two minutes after first approaching them to head towards my car. So now these guys are in a car, the car has rolled it is totaled, they are out of the car walking and talking, telling everyone to calm down and keeping us under control.
Bill Gasiamis 1:06:54
And I’ve walked past the scene of the accident. And I’ve gone to get off the grass onto the road to go into my driver’s seat. And I’ve tripped over and I’ve fallen on my face. And I was wearing sunglasses and I smashed them. And my wife who was looking for me to try and work out is everything okay? Because I asked her not to get out of the car to make sure everything is okay.
Bill Gasiamis 1:07:22
Then immediately became worried about why I was on the ground face down, and why I had scratches on my face. And all I could do was laugh about it. I said to her, those guys are all right. But I think I might need to go to the hospital. I didn’t need to go to the hospital. But I did crack my head on the ground when I hit the ground.
Bill Gasiamis 1:07:44
It’s like it still happens to me nine years after the initial incident, the left side didn’t realize that I had stepped off of the off of the grass onto the road. And it kind of wanted to stay where it was. And as a result of that, I stumbled and fell broke my glasses, scratched up my face and was the most injured person at the scene. And those guys were in a rolled car and didn’t get it. But that’s the way it goes sometimes.
Kristy Duncan 1:08:19
Well, I was just excited to hear you say that you ran. I never enjoyed running when I was in the military. But I was in the kitchen making tea or something the other day and just told myself one of these days, I’m going to do a 5k again. And if you had asked me that this time last year, now I still would have been at strokeville two years ago, I never would have I’m like why would I ever want to run a 5k and now it’s because I can and I want to.
Bill Gasiamis 1:08:56
I love it. You should do it. Now a friend of mine I interviewed very early on in the series, I’ll share that particular interview. Her name is Donna Campisi. And she has a foot drop and she ran a proper marathon. She is trained and trained and trained. And she overcame that challenge ran 40 kilometres. With foot drop she trained with it. She got personal trainers and everything.
Bill Gasiamis 1:09:35
And I interviewed her way way back at the beginning before the podcast was called the recovery after stroke podcast for episode 28 and the episodes called running after stroke with Donna Campisi. And let me tell you, the amount of people that I’ve heard, who have overcome really dramatic deficits who have been able to complete marathons or half marathons or do some crazy things that I never would have done before the stroke they’re doing after the stroke, I think it’s amazing.
Dealing With Post-Stroke DeficitsBill Gasiamis 1:10:10
And it took me a couple of years before I felt comfortable to start going back to the gym and running on the treadmill. Because I can’t, even though I can run to my car, I’m at risk of falling out because exactly what happened to me during that particular time seeing if those people needed help, because my leg doesn’t give me the same feedback as the right leg, I’m at risk of hyper flexing or overextending my knee.
Bill Gasiamis 1:10:48
And also my leg hits the ground a lot harder, so it doesn’t hit it nice and smoothly and subtly like my right leg, and it kind of just jars all the time. And I feel like it would be impacting my hips negatively, etc. So it took about, I would say a few years. And then the first time I went back to the gym to run, it was so uncomfortable. And it was so man, it was weird.
Bill Gasiamis 1:11:25
I can’t explain I didn’t really enjoy it, my leg would fatigue far quicker, say my right side wants to keep going for kilometers and kilometers and my left sides going, I’m done. It’s a few 100 meters. And I’m done. I’m not I don’t want to go any further. So it’s a complete mind struggle to continue to make my leg do the do the task to run. So when I was in therapy, and my physical therapist asked me what was one of my goals, I said to him to run.
Bill Gasiamis 1:11:59
And he was like, okay, cool, do that. Do you want to run marathons? Or what type of running do you want to do. And I said, I just want to be able to run across the road in case of cars coming. And it’s unsafe, and I need to get off there. That’s it. If I can do that, I’ll be wrapped. So that’s what we trained for. That’s what I did and overcame.
Bill Gasiamis 1:12:18
And now I can almost run across the road, so to speak without having to think about the sensation differences. If it’s a short road and a short distance. It’s too short for me to go into the overthinking pattern. But if somebody says to me, let’s go for a run around the block or down to the park, it’ll be a no for me, I’ll I’ll ride my bike, you can run and we’ll do that. We’ll do it like that.
Kristy Duncan 1:12:48
Yes, I enjoy hiking much more than I ever did running. And I don’t think that was more, I can’t do it now and I want to do it. So that kind of thing. But I’ll be glad when I can just wear normal shoes again, I have to wear a large hard plastic AFO because my ankle rolls on my left side. So I started out with just a drop foot AFO and that wasn’t enough. So I wear a size eight on my right foot and I have a size 10 on my left to fit the AFO in there
Bill Gasiamis 1:13:38
So just the size difference in the two shoes would make it a little bit odd as well. Because of the amount of space that the shoe takes up compared to the amount of space that the right shoe takes up.
Kristy Duncan 1:13:55
Potentially, I mean I can walk fine around the house, except at night I don’t use a cane or anything. When I go out I use actually a hiking walking stick because I found that that neutral position is gentler on my right hand and wrist because all my fingers have like trigger finger now and the tendons are tight and it hurts my wrist and it all the way up into the shoulder so I find that when I go out in public that the stick is much easier on my arm
Bill Gasiamis 1:14:38
Yeah. The right tools are really important in this situation and you can make things worse by using the wrong tools. I am still a little bit amazed and shocked in the fact that a AFOs are still such, the technology still seems really old.
Kristy Duncan 1:15:12
Rudimentary, almost for the hard plastic with just a little bit of a hinge. Yes.
Bill Gasiamis 1:15:20
This day and age, I find that a bit strange that the technology hasn’t moved. And there isn’t some Silicon Valley whiz bang TECHO guy going, we need to change this part of physical rehabilitation, and make it better and more efficient and thinner and stronger and more flexible or something, I don’t know, I think it’s a bit weird that we’re still in that situation with AFOs. But at least there is something that does help.
Bill Gasiamis 1:15:54
And it does help a lot of people. I’ve also come across a few stroke survivors who have had a AFOs and thought that the AFO was getting in the way of the recovery of the leg. And then they’ve decided that somehow they were going to remove the AFO and then go about rehabilitation without it. Some, I imagine with more success than others.
Bill Gasiamis 1:16:25
But that’s another interesting mindset shift and change that they had, which was perhaps this thing, which is technically supposed to be helping me is actually decreasing the recovery of the foot drop, and not making it and training of the foot not to recover perhaps. So different things.
Kristy Duncan 1:16:49
That is interesting. I am, I make myself walk a few steps without it every day. And even just to stand up on the side of the bed without it to get the feedback through the bottom of the foot. Yes, and sometimes if I’m really feeling daring, I’ll walk all the way into the bathroom without it because I can hold on to things very carefully. Because my ankle, it rolls very badly. And I’ve just found a video about how to stop the ankle rolling because of the tightness in the calf and the spasticity. So I’m going to start working on that too.
Bill Gasiamis 1:17:39
Fantastic. Well, Kristy, I really appreciate you reaching out to be on the podcast, I love why you did it, why you’re doing it. I love that you’re thinking of other people, and that you’d like to raise some awareness in the lupus community. And I wish you well in your ongoing recovery. And I want to offer you some hope and tell you that it’s early days in your recovery. And I think there’s a lot more recovery to go.
Bill Gasiamis 1:18:10
And I feel like with your attitude of a little bit of laughter, a little bit of self deprecating humor, and all the sarcasm and all the stuff that you need to do, I think it’s going to be really helpful as you go forward and continue to improve and get better. Thanks so much for being on the podcast.
Kristy Duncan 1:18:35
Thank you very much. I’ve enjoyed it. And I enjoy all your other podcasts. Thank you very much.
Bill Gasiamis 1:18:40
Well, thank you for joining us on today’s episode to learn more about my guests, including links to their social media and other pages. And to download a full transcript of the entire interview, please go to recoveryafterstroke.com/episodes. If you’d like to support this podcast, the best way to do it is leave a five star review and a few words about what the show means to you on iTunes, and Spotify.
Bill Gasiamis 1:19:05
If you’re watching on YouTube, comment below the video, like the episode and hit the notifications bell to get notifications of future episodes and subscribe to the show. These things make it possible for the algorithm or nominees on all these networks to assume or to believe or to think that the show is worth putting in front of a whole bunch of other people. Every time you do that, it gets spread to more and more people who need this type of content.
Bill Gasiamis 1:19:40
People like Naomi, who don’t know they need this content until something happens and they have nowhere else to turn initially. So I would really appreciate it if you interacted with the episodes as much as possible wherever you possibly can. Also by sharing the show with family and friends on social media, it will make it possible for those people who may need this type of content to find it easier.
Bill Gasiamis 1:20:08
And that might make a massive difference to someone that’s on the road to recovery after their own experience with stroke, it may also make a difference to their loved ones who are supporting them and trying to get them better. If you are a stroke survivor with a story to share about your experience, come and join me on the show. Interviews are not scripted, you do not have to plan for them. All you need to do to qualify is to be a stroke survivor, or care for someone who is a stroke survivor.
Bill Gasiamis 1:20:36
Or you’re one of the fabulous people that help other stroke survivors. Go to recoveryafterstroke.com/contact, fill out the contact form and as soon as I receive it, I will respond with more details on how you can choose a time that works for you and me to meet over zoom. Thanks again for being here. I truly appreciate it. Thanks for listening and see you on the next episode.
Intro 1:21:02
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals opinions and treatment protocols discussed during any podcasts are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed all content on this website at any length blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis.
Intro 1:21:32
The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice the information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.
Intro 1:21:57
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Intro 1:22:21
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The post Link Between Lupus And Stroke – Kristy Duncan appeared first on Recovery After Stroke.
Bill Lee Emery was recently diagnosed with stage 1 throat cancer and has the most amazing approach to recovery and the most amazing outlook on life. The wisdom he shares is relevant for people overcoming any health setback.
Highlights:
01:44 Introduction
03:30 Diagnosed With A Stroke Cancer
10:24 No Two Cancers Are The Same
14:57 Refusing To Take The Pill
22:38 Blessing or Curse
28:41 Communicate With Your Body
39:48 Mainstream vs Alternative Medicine
48:09 Man’s Search For Meaning
59:54 Nothing Is Sacred Anymore
1:08:00 A Heart-Centered Recovery
1:17:16 The Three Things
1:24:12 If You’re Not Following Your Heart
Transcription:
Bill Lee Emery 0:00
I’m here, I’m listening to my heart. I really love my body, we have a really nice time on the inside of us. I have a beautiful partner, we live in a beautiful part of the world. We have a gorgeous community that we live in.
Bill Lee Emery 0:16
There are so many blessings in my life. And Julie and I, when we go for a walk around our village, here we, we often say, Okay, three things, what are the three things that we’re grateful for.
Bill Lee Emery 0:30
And those things helped me to remind, sometimes of the little things. Just the little things that can bring so much joy, it doesn’t have to be a big thing. It can be a simple, simple thing. But that, to me brings more richness than some of the big milestones in my life. I’ve got to appreciate the little things more and more and more.
Intro 0:56
This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.
Bill Gasiamis 1:09
Hello, and welcome back to the recovery after stroke podcast. This is episode 233. And to learn more about my guests, including links to their social media and other pages and to download a full transcript of the entire interview, please go to recoveryafterstroke.com/episodes.
Bill Gasiamis 1:25
If you’d like to support this podcast, the best way to do it is to leave a five star review and a few words about what the show means to you on iTunes, and Spotify. If you’re watching on YouTube, comment below the video like this episode and to get notifications of future episodes, subscribe to the show and hit the notifications bell.
Introduction – Bill Lee EmeryBill Gasiamis 1:44
My guest today is my friend, Bill Lee Emery who has recently overcome a throat cancer diagnosis who has the most amazing approach to recovery and the most amazing outlook on life. The wisdom he shares is relevant for people overcoming any health setback. If you are anything like me, you will see how our conversation is applicable to stroke recovery as well. Bill Lee Emery welcome to the podcast.
Bill Lee Emery 2:11
And thank you, Bill. So good to be here.
Bill Gasiamis 2:14
It’s so good to have you here. It’s been a long time, my friend. How long was the last time since we caught up?
Bill Lee Emery 2:23
I don’t know if my memory goes back that far.
Bill Gasiamis 2:27
Was it at my place over dinner? Or was it in Queensland at one of your courses?
Bill Lee Emery 2:34
Gosh, you know, I don’t know. At my age, that’s not such a good thing to do.
Bill Gasiamis 2:42
It was one of those look, I’m younger than you. And I still can’t remember exactly the order. But every time that we were together, it was a really amazing interaction. And although we’ve kept in touch online through Facebook, and I kind of get to know what you’re up to, and you kind of get to know what I’m up to.
Bill Gasiamis 3:03
I was a little bit shocked about one of your recent posts about some of the stuff that you had been through recently with your health. And I know it’s not related I know it’s not specifically a stroke story. But it is a story that’s similar to what a lot of stroke survivors experience. Tell us a little bit about what happened to you and what it was that your health scare was about.
Bill Lee Emery Was Diagnosed With A Stroke CancerBill Lee Emery 3:30
So in July last year, I was diagnosed with throat cancer. Fortunately, stage one so I was lucky enough that I felt a lump here on my throat and it’s a bit unusual for that might have been a lymph gland. So I waited two weeks still there and it was a bit hard. So I went to see my doctor he said Yep, go check it out. So did a whole variety of different tests. And then I think was the CAT scan or the biopsy.
Bill Lee Emery 4:09
Basically the cancer was at the base of my throat. And this was like an offshoot if you like, this is the early warning signal for me. So because I found this and were able to find this and it was stage one. But I’ve never had a night in hospital in my life. I’m 73 I’ve never had any major illness or any major accidents. So I’ve been blessed with good health. And then to hear this was a bit of a shock to me.
Bill Gasiamis 4:48
Yeah. I can’t relate to that specifically because I was a lot younger when I had my dramas 37 But before that It was smooth sailing, so to speak until 37. And how I can relate to you is through my dad, because my dad Touchwood he’s been really well he’s turning 80 in a couple of days.
Bill Gasiamis 5:12
And what was interesting about going through that time when my dad was unwell and it for him while he was unwell with dodgy knee that he needed to have surgery on and replaced. And he was out of action for about three months, where they operated on his knee, then it was a time of rehabilitation, and then he had to get on his feet. And I remember how deeply that impacted his psyche, and how deeply that made him feel sort of put him into depression, and all these things that I had never seen in my dad before.
Bill Gasiamis 5:55
Really usually somebody who’s quite stoic, able to cope with a lot of stress, challenges, all the things that life kind of threw his way. But then to see him off his feet for three months, which was temporary and in the space of his lifetime, because the surgery was only about maybe seven or eight years ago, it was such a small amount of time, but it had such a massive impact on him in a negative way. Until he got back on his feet. What was it like for you to receive that kind of news? And then to kind of grapple with the what that could mean, in your head?
Bill Lee Emery 6:33
Yeah. So the so the doctors and several doctors told me this, I said, the thing that will help you go through this one is support. And your you know, Julie, so I have, in my part, I have a superb support system. Like I’m so blessed. So support was one thing, but mindset and mindset is the other is that these two things will make the difference between really how you deal with what’s going on, and how you process and recovery, etc, etc.
Bill Lee Emery 7:11
So one of the things, one of my default the things that I hold in my life is that nothing is good or bad, except that I make it. And Shakespeare put it very well when he said and how much nothing is I think he said that nothing is good or bad except how you make or I forget the phrase exactly. But so this I knew was a potentially pivotal moment in my life, especially around health.
Bill Lee Emery 7:47
So it could either be a blessing or a curse. And the choice hack was not going to be a curse. So I was going to turn it into a blessing. I didn’t know how. But that’s a framework that I had this experience is going to be a blessing for me, I have no idea how it’s going to turn out what’s going to happen. So let me just skip forward a bit. So during treatment, a lot of the Allied staff including speech pathologist, occupational therapists, and other allied staff will say to me, you’re amazing Bill.
Bill Lee Emery 8:29
And I’m going in my own head. Well, yeah, I’m amazing with or without the cancer. But I’m just what they’re saying what they’re really saying is Bill, the way you’re dealing with this is amazing. And for me, it’s not me being amazing. The thing that was amazing if something was amazing was a structure that I had that supported me through this.
Bill Lee Emery 8:29
So the structure itself is the thing. That’s amazing. I just happened to be using it. Now because I’ve been around. You know, I’ve trained with elite athletes training with the National skydiving team. I’ve worked with world class golfers, triathletes. So I know a lot about mindset and how to use it.
Bill Lee Emery 9:16
So this is a real opportunity for me to take those things that I’ve been using for somewhere 40 years and go, Okay, this is where the rubber hits the road. This we’re really going to use all the stuff that I know, and it’s going to be solid. And so I had some very clear boundaries.
Bill Lee Emery 9:35
Now when you mentioned cancer, the response I got from some people when I said you know, I got throat cancer, and some people say oh my gosh, how awful for you. I go, No, it is not awful. It is my cancer. My stage of cancer is 90% curable so it’s not awful. And I would not take on board and I was kind of I hope I wasn’t too blunt.
Bill Lee Emery 10:02
I was firm. Like, that’s your story about cancer I understand what your meaning, but it’s not awful, it is manageable, and I’m going to deal with it. And so this was the structure that I had inside of my head. And I’m so glad I was strong enough to have it and not get into other people’s, “oh you poor thing” kind of stuff.
No Two Cancers Are The SameBill Lee Emery 10:24
And I wasn’t going to have a bar of that. Like, they could see the fire in my eyes a couple of people like oh, okay, right. And but they got it, they understood what I was getting out that nothing is good or bad, except that I make it. And the other thing I learned through this as no two cancers are the same.
Bill Lee Emery 10:46
And it’s the same with stroke with brain injury, no two things are the same. They may have similarities, but the individual events within a human life. And so because, you know, I’m a healthy human being, I don’t smoke, I haven’t smoked for like 40 years or something I smoked when I was a teenager, my 20s I hardly drink, I’ve got very good diet, I exercise.
Bill Lee Emery 11:18
So all these things meant that my body was in a pretty good shape. And there are other people that had maybe less healthy structures in middle life. And so if they would come to this kind of event, they would have a different outcome. Now I got it at stage one. So it was right at the beginning.
Bill Lee Emery 11:37
And I said to the ENT surgeon, lovely doctor, I said okay, well, what if I wait six months or 12 months? He said, Well, you can. But he said when you come back, it might not be stage one. So I’ve been around so called alternative medicine or natural medicine for 40 years.
Bill Lee Emery 12:00
The medical system is an alien thing to me. I wouldn’t take Astros when I had a headache I you know, I use acupuncture points or drink a glass of water or something. So to go into this world of pharmacology and of high-end medicine was something of a complete unknown for me and for Julie my partner.
Bill Lee Emery 12:25
So we had some major things to learn. And one of the experiences I’ll tell you it’s kind of funny, but kind of tragic. One of the things that happened in throat cancer and as the ENT surgeon said, he said swallowing is likely to become it’s got to feel like you’re swallowing razorblades Oh, okay.
Bill Lee Emery 12:50
Just swallow, and for me, just being able to swallow was such something I look forward to be able to do so without this. This feeling of I’m swallowing razorblades and it’s painful. And I lost my appetite and didn’t know what to eat, I lost weight, but anyway, does that soak up from what they normally do at the beginning of treatment?
Bill Lee Emery 13:15
So I had from when I got my diagnosis. You know, Julie and I, we pondered do we go down the medical path? And fortunately, my naturopath is also a nurse happens to work with the oncologist that we were talking with. And she said if I were in your shoes, Bill, I’d go down the medical route. It’s a seven week treatment, seven weeks of chemo seven weeks of radiation five days a week, chemo once a week.
Bill Lee Emery 13:48
It’s a short intense period of time. Once you’re done with that, and then we can do all the things that I’m used to doing like acupuncture, naturopathy, chiropractic etc. Homeopathy use all those things, not only during as support, but also after. So it was a seven week actually nine week intensive sprint.
Bill Lee Emery 14:15
I have a friend of mine who’s had a seven year journey with cancer and that stage four prostate cancer. And he actually wrote a book called Patting The Sharks by Tim Baker, I highly recommend people read that whether you know, cancer or not doesn’t matter. It’s a story and what he did.
Bill Lee Emery 14:33
But coming back to this at the beginning of my treatment, I’m supposed to have a feeding tube that goes into your stomach. It’s I don’t have it here. But it’s basically a tube 20 centimeters long and it’s, you know, it’s a thin tube. It’s basically so if I can’t swallow, and I’ve can’t swallow, I’m going to die. You got to swallow take nutrition in.
Bill Lee Emery Refused To Take The PillBill Lee Emery 14:57
If I can’t swallow, then at least I can in through the feeding tube. So I go in for the open, it’s hot out, but they knock you out and etc. So I come out of this and I’ve got a feeding tube in me and I’m about to go home and say, well, here’s some drugs that you can take for pain. So good old hippie me. I said, well, what’s the alternative? That way you can take some Panadol. I really got this hardcore nuclear-powered pain control pills.
Bill Lee Emery 15:29
I take Panadol now I go home and I take one Panadol. And one Panadol is like farting in the face of a cyclone, it doesn’t know bloody good at all. I imagine if you haven’t done any exercise, and then Sunday, one day you go, I want to do 100 crunches, you know, add crunches, and then you’re gonna lie down slowly.
Bill Lee Emery 15:51
The pain was extreme when I lay down in bed, because I took one bloody Panadol and so and the look in Julie’s face when she’s seeing me go through this extreme pain that was actually harder than the pain itself. Anyway, we who went to certain naturopath and she said, Bill, just take the bloody drugs.
Bill Lee Emery 16:40
And so I had to go, Okay, just give me the drugs, man, give me the drugs. So I go back there take these nuclear power, pain control pills, and they work. So I had to learn to become a surgeon on my body. So I don’t normally pee at night, not until I had this cancer, then my body would wake me up at to 2:30 or four o’clock in the morning, at 2:30 in the morning, I don’t want to get out of bed and go do a wee.
Bill Lee Emery 17:20
But I had to realize I am the servant of my body right now my body needs me to do things, take the drugs as required. Get up at 2:30 in the morning, go do a pee and come back and go to sleep. So I became a servant to my own body. And I’m really glad I made that shift. Because I stopped doing the internal arguments like I don’t want to do this. And if my body needed it, I would almost salute and just do it.
Bill Gasiamis 17:48
I love that concept. My dad, going back to the reason for your explanation is my dad didn’t want to be the servant of his body after a lifetime of being well and doing as he pleases, so to speak. He didn’t want to give his body three months to just heal from having a new knee, and then he created his own additional mental anguish and suffering to the physical suffering that he was experiencing.
Bill Gasiamis 18:31
And it’s unnecessary, because I think that that mental anguish, decreased the rapidity of his physical recovery and his mindset was not that of somebody who was going to overcome this adversity. It was somebody who was stuck in a moment in time and couldn’t see light at the end of the tunnel a path forward.
Bill Gasiamis 18:58
Literally, after being forever well. And then just finding himself for like, you know what the audience would say? It’s like, the amount of time he was unwell. It’s like pissing in the ocean like it makes a difference. It’s like you’re saying about fighting in a cycle and and trying to make a difference. It’s such a small amount of time yet to see him suffer through that was worse than seeing suffering him suffering from the pain of being freshly operated on and stitched up and immobile.
Bill Lee Emery 19:34
Yeah. And that’s actually you know, for anyone listening here, this is such an important point. When when I had my PET scan, so we test came back said Yep, we’ve got throat cancer here. Then I had the PET scan to see if there was cancer in the rest of my body. So I had the PET scan on a Monday, and I was supposed to talk to the oncologist on the Wednesday. Well, he got COVID so that kind of blur that out, so it didn’t actually talk to him till the Friday.
Bill Lee Emery 20:04
So I had five days of wondering, is it just here in my throat? Or is it in the rest of my body? And it was like being, you know, practice mindfulness for a long time? Well, this was mindfulness on steroids. You know, I walk out, you know, where we live here in the Eco village. And I’ve looked at nature and I’ll be again, wow, it’s like I was, you know, back in my 20s, smoking dope going far out, man, look at this leaf.
Bill Lee Emery 20:34
And it was like, every single day, no day was Ordinary, ordinary day, just every day was like, an adventure, because I didn’t know what was going to happen next. But one of the things I was very clear about my body was about to go through a whole bunch of trauma, chemotherapy, radiation, like neither of those things are pretty things.
Bill Lee Emery 21:03
And what I didn’t want to do was to add more stress to my nervous system to my adrenals. So maybe twice, in that period, I would go forward into the future with a negative outcome. Oh, my God, what if I did it twice, and I’m going whoa, hang on Bill. I’m a servant of our body, I’m not going to hit myself over the head with all this unnecessary angsting. Because I didn’t know what was going to happen.
Bill Lee Emery 21:33
And if I don’t know what’s going to happen, then at least give myself the best chance of something good happening, because it’s either a curse, or it’s going to be a blessing. So I didn’t allow myself, I had boundaries on my own imagination, I wasn’t gonna go forward and scare the shit out of myself, about all the horrible things that could possibly happen to me. I knew there was a 90% chance of recovery, and I was gonna be in that 90%. So I had a very clear outcome.
Bill Lee Emery 22:01
And so for anyone listening to this, when you get any kind of diagnosis like it’s almost indulgent “what if” “poor me” I understand it. But it’s indulgent, our body, just does not need that extra stress. And I’m really glad I had those clear boundaries, other people, but I had those really clear boundaries with myself, I wasn’t going to do that to myself.
Blessing or CurseBill Gasiamis 22:38
What’s interesting that came up for me when you said it’s either a blessing or a curse, even a curse could be a blessing. Right, because we label something as a curse. Before it has been able to fully play out its lifeline, its cycle. And again, labeling it occurs is again, taking us down that path of despair, taking us down that path of negative mindset I’ve stuck of being fixed of not being able to see the light at the end of the tunnel. Yet, I know that, you know, and I’m writing the chapter in my book at the moment, which is a chapter about stumbling across your purpose.
Bill Gasiamis 23:27
My purpose be this podcast writing a book about supporting stroke survivors, doing all that stuff came from, what was or appeared to be to some people a “curse”, I never took it that way. But some people did. And now those people are the ones who 10 years down if you you happen to get into a conversation with them and kind of give them the update of where I am now what I’ve overcome whatever achieved, etc.
Bill Gasiamis 24:01
If you remind them what they said 10 years ago, or what they imagined or what they thought that perhaps this was some kind of a curse. They would, they would have a completely that they would their head kind of wouldn’t be able to comprehend that what they said such a long time ago could have been so short-sighted. Do you know what I mean? Like it was so short-sighted.
Bill Lee Emery 24:36
Yeah. And it’s about perspective. And it’s also you know, it’s tough when you get, you know, a diagnosis of any kind. That can be potentially life-changing or life-threatening. But there’s so many people doing extraordinary things in the world. And they’re doing it Because of some event that happened, that could have been a curse, but they’ve taken that thing. And they’ve made it into their life’s purpose, their life’s work, and they’ve been able to serve like you are so many people because of that particular thing happened.
Bill Lee Emery 25:16
And many people said to me you know, am I am I going to share what I’ve, what I’ve learned? And I’ve written a couple of books this, you know, and Julius hits me. This isn’t going to become another book, as I say, well, now one, well, kind of well, yeah, probably. So of course it is, of course, it’s gotta go revocable something I’m going to be doing this year, because there are things that any of us, you and I, if you’ve been doing something for a period of time, you can take that for granted.
Bill Lee Emery 25:55
Almost, it’s like everyone knows that stuff. Well, not everyone does. Not everyone knows that things that you and I have experienced and some of your listeners have experienced. And so for me, if I can adjust some of the people I would speak to in the hospital and around, just give them a little, a few snippets that go, Wow, that’s amazing. Game one. Yeah, it is amazing.
Bill Lee Emery 26:17
So it’s even more amazing when you use it. So talk to some of the nurses about pain control, you have that language, a whole bunch of different things. So, you know, this is an event is neither good nor bad. And I intend to make it a blessing. So there will be a book, my version of what’s been going through my life last six months, so that maybe other people can pick it up.
Bill Gasiamis 26:42
I feel like and, again, this just coming from me, right? I feel like it’s your obligation to write a book about it. Do you know what I mean? You know, where I’m coming from coming from a place of love, right? It’s that the only thing we can do as human beings, well, we can do lots of things. But I think the only meaningful thing that we can do is make life better for other people, whether we’re here or not.
Bill Gasiamis 27:11
If we can make life better for other people, our purpose in life, our life’s purpose has been met, we’ve done it. And I feel like everybody doesn’t have to write a book. But I think everyone has an obligation to write one if they have the resources, and if they can, and if they choose to. And it’s like, there’s no doubt about it, that your version of your story, although it’s different from mine, I can learn from it, I have already learned a lot from it.
Bill Gasiamis 27:41
And, and the fact that you’ve already experienced what it’s like to not be able to swallow and to go through occupational therapy and to go through all the things that you went through, there are things that stroke survivors go through stroke survivors often lose their ability to swallow because of the stroke. Others have that ability taken because of the stroke of then it’s complicated by the tubes that go down their throat and the amount of time they need to keep them there. And there’s no doubt about it that what we’re all doing is doesn’t matter how our, our suffering, turns up, we’re all going through suffering, and we’re looking for a way out of suffering. And that way out is the part of the story that needs to be told yes. And shared so that others can go, I might try and do a little bit of Bill’s version. And I might try a little bit of that guy’s version and so on. And then yes, let’s see what happens.
Bill Gasiamis 28:08
And there’s no doubt about it that what we’re all doing is doesn’t matter how our suffering turns up, we’re all going through suffering, and we’re looking for a way out of suffering. And that way out is the part of the story that needs to be told and shared so that others can go, I might try a little bit of Bill’s version. And I might try a little bit of that guy’s version and so on. And then let’s see what happens.
Communicate With Your Body – Bill Lee EmeryBill Lee Emery 28:19
Yeah, because all the things that I did my system that I had, I didn’t make them up other people made them up. And one of the things that I found really, really useful. And something I’ve been doing for a long time from my Gestalt training, is I talk to my body, you know, me and my body have a lovely relationship.
Bill Lee Emery 29:03
We really like each other, you know, I’ll hug myself sometimes, and even in public, don’t scare too many people don’t do it on buses, me, and my body had this really beautiful, intimate relationship. And I’ve been doing this for a long, long time. So when I first got the diagnosis, me and my body would have a chat and say, Hey, buddy, this is what’s going on. And the other thing I did not do is wage war on my cancer.
Bill Gasiamis 29:39
Tell me about that. This is really interesting.
Bill Lee Emery 29:41
Because you know, the war against drugs, the war against terrorism, the war against this, the war against that, in my view, all it does, is put money and attention into places where you don’t need it and they’ll never stop drugs on the world, they’ll probably never stop terrorism in the world. But you find all these different companies becoming extremely rich because of it.
Bill Lee Emery 30:10
And so when people have a battle against their cancer or their stroke, they are fighting their own body. Now, me and my body, my psyche, my DNA, my genetics, everything, my view of the world, my childhood upbringing, my traumas, all these different things, we all collaborated together, and it came up in a form of throat cancer. So it’s like, if I was to stab my toe, will be to blame my toe, and hit my toe for stabbing it against a rock, well, I’m part of my toe, it was my lack of awareness not looking where I’m going, then I’m connected to this.
Bill Lee Emery 30:57
So instead of fighting my cancer, I decided to collaborate with my body. Because together all of us, you know, me, myself and I and my body, etc, we co-created this, it didn’t pick on me, it’s something that we did together. So rather than fight it, I would collaborate, I would talk to them about it, say, Hey, this is what’s going on. Here’s some treatment. So even before I had the treatment before chemo, before radiation I would tell my body, this is what’s about to happen, take the good things that we need from this, you know, high end medical system that are so alien to me and the pharmalogical drugs that they’re gonna give me take the best that you need from this.
Bill Lee Emery 31:40
And, you know, let’s get rid of the rest as soon as we can. So I talked to my body, just before I go to sleep, I’d say Hey, buddy, how you going. And we’ll have this lovely chat. And, I have to share this with you, this is just a beautiful vision I had, you know, as cells in our body are dying, and replenishing as we speak, you know, all the time.
Bill Lee Emery 32:03
So I had this kind of vision of, there were two cells. And it was like, you know, in a race when you have a relay, and there’s a baton that you pass from one to the other. So it was like, the one that was dying would pass on the bathroom of the DNA to the new cell. And the old cell would whisper to the new cell, hey, our human being loves us.
Bill Lee Emery 32:29
And so the new cell would get this information that our human being loves us, we go, wow, good, we have a human being they just loves us and appreciates us. And it was dancing and running off until the next one. And so it was such a blissful kind of experience.
Intro 32:47
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, doctors will explain things. But obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 33:11
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called seven questions to ask your doctor about your stroke.
Intro 33:31
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website now recoveryafterstroke.com and download the guide it’s free.
Bill Lee Emery 33:50
I don’t take drugs I could feel the cells in my body just radiating out appreciation for my appreciation of all the hard work that they were doing through this seven week intense in a fairly intense kind of sprint, it was a sprint, not a marathon. So and just being able to do that I think made a big difference.
Bill Gasiamis 34:23
For as long as I can remember before I knew that the way we speak to ourselves has a physiological response. Right? I used to do that with cold so I’d have a get a bug over winter or whatever and I’d let it run its course for a couple of days and then by day three or day four, you know I’d be over it as well. I wouldn’t want to I’d want to get back out and about and whatever not go to bed and just say okay, it’s been a couple of days you’ve done your thing.
Bill Gasiamis 34:54
I appreciate it, I’m taking notice, I’ve you know, rested and I’m good gonna continue to rest and get better and heal myself and the nose, you can stop running now and the chills, they can go away now and you know the rest of the body can just do what it’s got to do to get me back on my feet and make me feel better, etc. And I will do that always after probably day two, maybe day three, and then the next day, I would start to notice a shift in the way that I’d feel.
Bill Gasiamis 35:31
In the times that I didn’t do that my cold my recovery or whatever you want to call it took a little bit longer, three, four or five days, and it would extend out. And I’d be off my feet for a little bit longer. And it was I think me just not paying attention to what my body was telling me and then not doing what it needed me to do, and therefore extending that, but when I did pay attention to my body, and I did tell it that I was paying attention and listening, it was coming, it was decreasing the amount of time that it was expecting me to be on my butt resting.
Bill Gasiamis 36:10
And again, I took this into surgery when I was going into brain surgery for the after the third bleed in 2014 in November 2014. And I remember, I had spent about three years preparing my body for this particular surgery. And I had stopped drinking caffeine, gluten, dairy, alcohol, all those things were out. And I was in the best shape I had ever been. And the whole purpose of that was to deliver to the surgeons the best possible version of myself. So what they’re dealing with is just my head and not with the rest of my body.
Bill Gasiamis 36:54
And that I figured was the best gift I could give them. Seeing as though I really wanted a really good outcome from them. And I expected them to be on their game, right. And then I remember, I got in touch with a guy who is a hypnotherapist amongst other things. And I asked him to come and take me through a session where the outcome was to have a conversation with my body about how much it was going to bleed during the surgery and for what purposes it would bleed. And when it would be necessary and when it’s ok to stop.
Bill Gasiamis 37:37
And that’s basically what we did, we went through that process so that when the and that I told my brain that it was going to be opened up and interfered within that when it happened, it wasn’t going to be a shock to the brain, it was going to be prepared for it. And that when that finished that was also going to be a a time to just settle down, relax, get into healing and let let the next sort of part of the process take its course.
Bill Gasiamis 38:09
And I don’t remember any of that conversation that I had with my hypnotherapist because I was under I was out. It was an hour session. It felt like about a minute or two. And when I went into surgery, we had been given the expectation that this is going to take the majority of the day, I was the first person booked in because they expected it to take the longest.
Bill Gasiamis 38:40
And they were planning on a massive long day. And I was in surgery for half the time that they expected. And it was a real kind of surprise to the surgeons when they were speaking to my wife saying, look, this went really well everything that we needed to do was done with took out the faulty blood vessel. You know, he is going to recovery now he’s going to recover but the surgery took half the time to what we thought.
Bill Lee Emery 39:18
What you’re saying here, Bill, it is so important. I learned to negotiate and make deals with my body 30, 40 years ago, and the same thing you know, I get a cold or flu or whatever. And I say I’m becoming a servant on my body. Now in my journey into mainstream medicine and pharmacology, etc.
Mainstream vs Alternative MedicineBill Lee Emery 39:47
There’s this sometimes a separation of views. There’s mainstream medicine and there’s so called alternative medicine. And both these fields, sometimes throw Scud missiles at each other. And they that learn from the wisdom that are both caught. And I have to say I appreciate all the millions of dollars that they put into these machines that were wurring around my head and body with the radiation.
Bill Lee Emery 39:48
Because I might have been the same state. So I have now and for pharmacology, I have a great deal of appreciation for that. But one of the things they don’t always share some of the wisdom that comes from maybe a more philosophical approach, my radiation specialist at the end of my treatment, we were reviewing my progress. And he said to me, he has asked me what I was doing.
Bill Lee Emery 40:54
And I was telling him, you know, because they pretty much heard my story all the way through, he said, Bill, you’re not normal. And I said, Thank you. Can I quote you? He said sure. So that’s the first line of my book, Bill, you’re not normal. And my point here is that if only the surgeons who worked with you, and I don’t know whether they did or not, and I’m assuming that they didn’t.
Bill Lee Emery 41:24
But they said, hey, you know, this guy Bill that came in? How come it took half the time? Yeah, if every patient that came in, did the same thing that Bill was doing. We can get twice as many people in a day. Or we could spend half a day playing golf whatever they choose. So why isn’t that they don’t go just Oh, yeah, that just, you know, that’s weird.
Bill Lee Emery 41:52
And they don’t go exploring? Well, what are they doing? So I was talking to my radiation specialists whose full name is Siddhartha. They call it his name, they called Sid, I’m going Siddhartha as in Prince Siddhartha, as in who became Buddha? And he is smiling, because he knows, but not too many people, I guess, know that I’m going well, I have got Buddha as my radiation specialists.
Bill Lee Emery 42:21
And he was telling me a story in Western Australia, where a naturopathic friend of his wanted to get together with some mainstream people, and have a conference where both opposites if you like, could meet and share wisdom. And it never got off the ground. And he said, he’s a guest who candidate? I’m going to medical people. He said, No, it wasn’t. He said it was the naturopaths.
Bill Lee Emery 42:51
They didn’t want to deal with the opposite side. And really, what I’m saying is here is there is a place for Integrative Medicine, where we take the best of both, and we get both sides to explore and see what’s in the other camp. Because there may be some things that are just out of your viewpoint that can actually save a lot. They can reduce suffering, that maybe there’s some drugs that you do need, maybe there’s some homeopathics, or naturopathic things that can mitigate some of the side effects of medicine.
Bill Lee Emery 43:25
When I cut the list of what the chemo can do, there was like five pages of all the things that the chemo therapy can do to my body. I think if I looked at that list, the beginner would have gone whoa, all of that stuff. No, thank you. But fortunately, I was working with a natural, so Well, okay, take the drugs for this, and we can mitigate those side effects. So, you know, as a consumer, I’ve got the best of both worlds.
Bill Lee Emery 43:53
I’ve got the high end, you know, technology and the drugs. But I’ve also got the wisdom from acupuncture, which has been around for 5000 years, or more. So I have regular acupuncture and going to my chiropractor and have natural probably I can say my naturopath, I’ll do all these things to support me because I wanted to give my body the best chance of so my mantra through this was to heal through it and thrive from it, not just survive, I want to thrive.
Bill Lee Emery 44:29
So now I’m in the thriving part of all of this, because to just give an update just before Christmas, when I had another PET scan. So it was three months at the after the end of my treatment of radiation and chemo. They give you a PET scan to see what’s going on. And my pet scan was an all clear. So my body has gone through this journey. It’s come out it’s okay there’s no cancer cells anywhere. It’s all that now I still need to check every three months and then every six months.
Bill Lee Emery 45:01
You know, we kind of figured that was going to happen, but it was really good to get the clinical results of clean Bill of health. And, and that’s in part because of the state of my body to begin with. But also because it’s for that I got because of the mindset I had, because of all the beautiful test another thing that we did the beginning, Julie and I decided, okay, so this is going to be January, I don’t know how it’s going to happen.
Bill Lee Emery 45:31
But let’s have let’s call in human angels along the way, let’s have these beautiful human beings pop up exactly when we need them. And they would, in our health fund in government services in the hospital, we’d have people come in to do some gardening for me because I didn’t have the energy to do that at all. Someone produced pumpkin pie so all these human angels will pop up and go, Wow, this is far out, how long has this been going on.
Bill Lee Emery 46:02
So we keep on we’ve kept that going, we’re still calling in human angels to help us to do this to do that. And so this is now a permanent thing. And human angels are everywhere, your Human Angel, to so many people I am to so many people. And so they’re there, we just have to kind of once you call them in, they show up more often. Because now you recognize that they’re there.
Bill Gasiamis 46:26
The similarities in the stuff that you’re coming up with, that happen to you that you experienced, and the stuff that happened to me and I experienced and all a whole bunch of other stroke survivors who I’ve spoken to, you know, more than 200 Now on my podcast, is just uncanny. And I’m gonna go over it, but I’m gonna do it at the end, because I know we’re going to touch on more.
Bill Gasiamis 46:49
And I just, I’m not surprised. But now that I’ve seen the pattern it continues to pop up in every aspect of life. It’s just, it’s just fabulous that we all share actually the same pattern to get to this point. i The point that I got two strikes, the best thing that ever happened to me. And what you’re describing is you’re describing a lot of the key things that made it possible for me to say, and many other stroke survivors who I interviewed to say that and that came from a situation that was not ideal suffering.
Bill Gasiamis 47:31
And then what else came from that was from attaching meaning to that suffering. Which then if you attach meaning to suffering, and then you take action on that, then that leads to purpose. Now, some people listening might not be at purpose yet, but they are already in the phase of experience suffering, they’ve attached the meaning to it, and now they’re starting to reach out to make a difference for other people.
Man’s Search For MeaningBill Gasiamis 48:09
And what’s to come is their life’s purpose will emerge because that’s what life’s purpose is. And that reminds me of an equation that Viktor Frankl spoke about which is despair = suffering – meaning.
Bill Lee Emery 48:42
Yes, I was thinking about Viktor Frankl and he, of course, was a Holocaust survivor. And what’s his book in search of meaning?
Bill Gasiamis 48:52
Man’s Search For Meaning.
Bill Lee Emery 48:54
Yeah, which is like, you know, from such a dire kind of horrendous place. You know, that was his book, and his experience and the way that he approached it was his gift to humankind, which was such a precious gift, and so many people that have gone through horrendous things. But what’s emerged from it, and you say, the best thing that’s happened to you and, this has been one of the best things that happened to me, I gotta say.
Bill Lee Emery 49:27
Because of the gifts and the gems that are there. And if when something like this happens, we can have the foresight to go, okay. There are gifts amongst this. I don’t know what they are, but I’m going to look for them, then you’ll find them. But if we go in going, this is shit, this is horrible, this is a disaster. Then they have right in front of us, but we don’t have the eyes. We don’t have the ears. We don’t have the consciousness and notice that they’re there. And so we miss them.
Bill Lee Emery 49:58
And so we have to go Through all this despairing and more suffering, like, I don’t know who said it, but it might have been, it might have been Buddha that he said, but it’s like pain is inevitable. Suffering is optional. Any living things are going to experience pain, and suffering is an optional extra. And to the degree that we do despairing around our suffering, then we don’t make anything useful of it. So no matter what happens to us, we can, we can if we choose, and it can take, you know, understand this can take a lot of courage, it can take a lot of perseverance, it can take a lot of consciousness to go and do that.
Bill Lee Emery 50:40
But the alternative is just despair. And that’s just plain shit. No good thing about playing despair, and you can pick yourself out of it. So at least people listening to this, if they’ve listened to the other podcasts that you’ve gotten and for other people is, it comes down to us, in the end, it comes down to us and our state of consciousness, and our perspective and what we choose to do with it.
Bill Lee Emery 51:18
Because you know, we can have all this laid out in front of us, it’s like going to a banquet. And we’re starving, hungry, it’s laid out in front of us. But until we reach our hand up and pick out a piece of fruit, or, you know, a piece of chicken or whatever, and we eat it, and we consume it, and we do something with it, is there in front of us, but it’s no good until we actually take some kind of action.
Bill Gasiamis 51:45
Yeah, one of the things that I think Viktor Frankl was really good at was understanding the different types of suffering. So he definitely experienced physical suffering, because he was in a concentration camp, they used them as slave labor to build train tracks and to build infrastructure and to build all this stuff that they needed to keep the war effort going. So he was in constant physical suffering, because of the lack of equipment, shoes, the beatings that he would receive.
Bill Gasiamis 52:17
And then he realized that there was another aspect of suffering the mental suffering, which was the one that was going to be his worst enemy. And that he separated that the physical suffering from the mental suffering and he made the mental suffering, he transformed that into this is going to mean that I’m going to be able to get back to humanity, when all this ends, and I’m going to be able to tell the story, and I’m going to be able to help people overcome things.
Bill Gasiamis 52:50
And he also, as a psychotherapist, he was also able to use his skills to support people get through whatever it was that they were going through while they’re in the concentration camp with him. And what I think I also understood, but I haven’t been able to find a follow up to it was that he was also able to, for the moment, while he was in their time, kind of put a pause on the emotional suffering. Because he saw so many horrors, that what he had to do was disconnect from that for that time.
Bill Gasiamis 53:23
And then as a result of that, he kind of park the emotional suffering. And I feel like, but I never got to see any information about Viktor Frankl later. I feel like he dealt with the emotional suffering later. Yeah. But while he was in that moment, he was kind of accepting the physical suffering, transforming the mental suffering, and parking, the emotional suffering, and they all got dealt with in the appropriate time.
Bill Gasiamis 53:58
And when you see him speaking interviews on YouTube, you know, maybe I think in the seven years he’s being interviewed about his time, and about his experience and what he learned and what he taught other people he doesn’t appear to be the kind of person who I would picture talking about his time in such terrible circumstances in such a terrible situation, does not put that vibe out at all.
Bill Lee Emery 54:28
Yeah. And I think you know, when we’re in a time of crisis, you know, let’s say there’s a car accident and someone’s injured if we, you know, cry and wail and moan and and have a big emotional reaction then we’re not much good. You know, at that point, you’ve got to Okay, move the body, help the person in the way do things stop the traffic, get help, etc.
Bill Lee Emery 54:55
And park your emotional distress about it, and then deal with it later. And of course, the body becomes a vehicle for anything that’s an Express, that’s not resolved. And so, at the beginning of my treatment, I went to see someone who could help me deal with any of the past emotional things that have led to me because it’s the throat chakra. I’m the youngest of three boys had to get my voice heard, there’s a bunch of things around this.
Bill Lee Emery 55:30
And part of my story was, you know, my throat was my weak link. And if I get a cold, and it would hit my throat first. So my story around my throat was this was my weak link. And I’ve been keeping the story going for decades, once I realized that I stopped that. And now this is actually my strength, and my voice has got power. The other story around me is I’ve got a cast iron stomach when I was a child, so I could eat anything. And that’s a really healthy thing to have.
Bill Lee Emery 56:03
So I was really the language around my throat, and how I would do this. So, you know, when I look back, and all of these things, and you know, the emotional aspect, the DNA aspect, the things from my ancestors, all these different things that culminated in this experience for me, giving me an opportunity to learn more about myself. One of the things too, when I was doing my NLP Master Practitioner, there was one of the trainers a guy called Peter Dawson.
Bill Lee Emery 56:37
And he was well known in the NLP field for doing what he called slaughtering sacred cows. And what he would do, he would take one of the concepts around NLP. And he’d pull it apart, he would slaughter the sacred thing that we had held in NLP, I think it would help us put it back together and why. So one of the sacred cows that I’ve had since I was 28 29, is I haven’t eaten red meat in like 45 years.
Bill Lee Emery 57:12
I did that because I learned I’d come out of the world of computers and start a whole new life and now I’ve been meditating. And when I first started my body said, Bill, you don’t need red meat anymore. And I’ve been an avid red meat eater. And so I went okay, sure, and I just stopped eating meat. And then that became part of my identity. I am a non meat eater, I would eat chicken or fish, but I don’t eat red meat.
Bill Lee Emery 57:43
So when I was going through chemo, and chemo just shatter my blood cells, like just annihilated them, my platelets were down my red blood cells were down they were just like as a mess. And at one point, I couldn’t actually have chemotherapy because my platelets were down so low. And then the next week, they were down even lower. So not only couldn’t I have chemo, but they had to give me a blood transfusion.
Bill Lee Emery 58:12
And a friend of mine said, Bill, the best way to get your blood cells, your hemoglobin back up again, is actually eat red meat. I haven’t eaten red meat in 45 years, but now I’m a servant of my body. If my body wants red meat, I’ll eat red meat. And my daughter who’s 32 now and she’s a vegetarian has been all her life has never eaten meat ever in her life. So I’m telling her Hey, darling, guess what, I’m gonna need some red meat now.
Bill Lee Emery 58:53
So I said a men’s retreat and I told people what was going on. I said I’m slaughtering the sacred cow of a non meat eater and now I’m going to become one and on the Saturday morning, they most of its vegetarian and saturday morning we’re going to have sausages and bacon, etc. So I’m going, alright it’s a good time. So I had two sausages, and some bacon and some eggs and mushrooms, etc.
Bill Lee Emery 59:24
And I ate them down. Too much too soon. My body was just going, what are you doing Bill? So that next morning, I was like I was I miss workshops in the morning. I couldn’t participate. My body was just churning and I just you know beef sauce is probably not a good starter bacon probably not a good idea. I would have been better off just having little bits of brisket.
Nothing Is Sacred AnymoreBill Lee Emery 59:54
So I did tell my body okay, body, I’m gonna give you some red meat because of blah, blah, blah, and here it comes. And my body should’ve said, Bill, not two sausages, maybe a quarter of one and forget the bacon, let’s just do this bit by bit. And so I kind of learned from that, and my next door neighbor was making this beautiful Angus beef lasagna. And it looks so really nice, so lovely.
Bill Lee Emery 1:00:24
And I had a slice, and I should have had a quarter of the slice, because the next day, you know, my body is going oh no. So now I’m a very slow red meat eater, but that was me, again, being a servant to my body, and taking the things that I’d held as being sacred. And going, you know, when I first stopped eating red meat, my body didn’t say just for a week, Bill was just for a year. And I kept it as an ongoing thing. I never questioned it.
Bill Lee Emery 1:01:01
And so the lesson for me is, you know, whatever I take on board, maybe I need to review those things. And in this space, what my body’s actually needing is a little bit more protein from red meat. So I am taking a little bit, and it really helped me to go at that time I’m going, anything is open, I’m willing to look at any part of my life, in service to my body, nothing is sacred anymore, nothing is sacred.
Bill Lee Emery 1:01:34
And that was like a big jump for me. Because, you know, there are certain things that I would hold as being this is it, this is me, so everything was on the table. The only thing the higher, logic ever around this was like, if it says my body, I’ll do it, if it means standing on my head, whistling Dixie, that I’ll do that. Whatever my body needs, I’m gonna serve it.
Intro 1:02:00
It feels similar to the way people bring behaviors from the teenage years or from the 20s. Or from, you know, when they were in primary school and apply them to life when they’re 30 40 50, or 60. And it’s like it was appropriate, then, yes, times have changed, things have moved on people around you are different. No one knows your history in the place that you work, for example, that behavior is no longer appropriate, you can stop doing it, expressing it, telling us about it, whatever it’s possible to stop, and to change it and to turn it into something else.
Bill Gasiamis 1:02:43
Because it just has no value here. It’s like trying to plug in, you know, the very first television that was ever invented in 2020, you’re not going to get anything out of it, you’re just going to be wasting your time. So it’s really interesting, and you did it a couple of times, you also did it with your ideas and your thoughts around, you know, modern medicine, and whether it was appropriate to go down that path.
Bill Gasiamis 1:02:43
And up until that time, it hadn’t been appropriate, it wasn’t necessary, and you did well in I’m not gonna say avoiding it, but in not being reliant on it, because you did a great job. And then when it was necessary, yeah, it was necessary. And that idea from your 20s to be a, you know, that hippie version of you.
Bill Gasiamis 1:03:40
Express itself, but not so fundamentally that it was going to then be in the way of you getting better. And being able to tell the story about it and then being able to write a book about it that’s coming up. And then also, you’ve gone down that path of changing, turning this or evolving this or growing from this, this other work that you want to do and help men out. Tell me a little bit about what else has evolved from this situation that you went through?
Bill Lee Emery 1:04:12
Yeah, so I’ve done a lot of work in the last 10 years around men’s work. There’s an organization called Men’s Wellbeing Australia, which is a national thing and that two gatherings that happened in Queensland one called Manhood and the other ones called Man shine. And I went to an elder’s gathering and was initiated as an elder, officially an old fart now.
Bill Gasiamis 1:04:43
Congratulations.
Bill Lee Emery 1:04:47
And in that work, you know, men are typically portrayed as not having access to our feelings, and I had to say that’s completely wrong in the right circumstance, we are fully connected to all the feelings of human beings have.
Bill Gasiamis 1:05:10
What’s the distinction? We are fully connected. So, men are perceived that way. You, and I both agree that we are connected. But what’s the distinction there? What is the thing around men and their feelings that’s challenging? Or, that’s an issue.
Bill Lee Emery 1:05:27
So again, that’s like, you know, as we’re a teenage we act in a certain way. And we generalize about life as a teenager or life as a male life is a female, and that women are more in touch with their intuition. Well, you and I both know that intuition is a human thing. It’s not gender specific. But you know, cultures grow up, and men do this, and women do this, and etc, etc, etc.
Bill Lee Emery 1:05:55
And so we get assigned certain ways of, you know, men can’t multitask. Well, I have to say, multitasking, is a load of shit anyway, in my view, you’re better off doing one thing at a time being fully present. So part of my involvement in men’s work is, it’s been such a sacred space for honesty, and truth, and respect.
Bill Lee Emery 1:06:22
So when we sit in a circle, and someone has a talking stick, that only one person speaks at a time, no one tells people want to do there’s no advice giving, there’s no philosophizing, there’s only owning your own stuff. So we use a lot of I statements. So I feel I think I do, not you do we do is me owning my stuff.
Bill Lee Emery 1:06:46
And within this space, when human beings, male or female, because I know women’s groups do the same thing, too. When we’re allowed to express what we’re feeling, what we’re thinking, and our experience of the world, without interruption, without advice, without someone telling us how to do or how to be, we can become our own healers. And what we do is we create the space around there for absolute intimacy, and honesty.
Bill Lee Emery 1:07:24
So going back to, you know, my earlier conversation about the structure that I had, structured creates everything, everything has structure, one kind, when we have a clear structure, which leads to a certain outcome, then the structure is the magic. You know, we have to go through and do the magic thing. So you know, when the doctors and nurses are saying, you’re amazing Bill and going yeah, well, right. What’s really amazing is the structure that we’re using. So in men’s work, that’s a very clear structure.
A Heart-Centered RecoveryBill Lee Emery 1:08:00
And I guess why I’m led to this and why I love it so much. It’s very heart-centered. It’s very heart-centered. You know, people don’t care when we go to the gatherings what your status is, what kind of car you’re driving, how much money you’ve got, how many houses you got? Your investment? The only thing the only criteria is how open is your heart?
Bill Lee Emery 1:08:26
How generous is your heart, how compassionate is your heart, not how clever you are or how gutsy are you are as a warrior it’s what’s in your heart. And that’s why I love this particular space, and why I’m doing a lot of work in that area. And that’s where, you know, this next area of my life is going to be around doing that. And the other thing that comes from this, too, is, you know, I said before that I want to heal through and thrive from.
Bill Lee Emery 1:08:58
So part of my thriving is helping men in particular. But not exclusively, find their second wind. You know, when you’re in a competition, and you’re in a race, for example, and you hit the wall, it says they come from this point of exhaustion, but you keep on going. And what happens is you kick into a phenomenon called the second wind, and you’ve gone through all the hard stuff, you know, the hustle and the grind and, and the exhaustion and the pain and the determination.
Bill Lee Emery 1:09:29
And then when you get into the second when it’s easier, there’s less effort, and you get further faster. And for me, a lot of people half the age men in particular, you know after the age of 45 50 they’ve come from the corporate world, they’ve done all the hard yakka and now they want more ease and grace. Now they want to live more on their heart. So my work really now is helping people find their second wind, what’s the thing that brings them joy, what’s the thing that makes their heart sing.
Bill Lee Emery 1:10:03
Because in my world, if my heart has not singing, it’s probably sobbing quietly somewhere in a corner. And I would much rather use my skills, things that I’ve got to help people find what makes their heart sing. And, to allow more that space into the world. Because, you know, when I look around the world, and all the things that I see happening, which I’ve never seen before, in my whole life, we need more heart singing and laughing.
Bill Gasiamis 1:10:36
It sounds like it’s supporting people to, to apply meaning to their life now that the we’ll call it hard stuff is out of the way, raising the family paying off the mortgage, or that kind of stuff, and then potentially even uncover and discover the purpose for their life. Because purpose takes on this weird thing again, you know, kind of we fall into purpose when our kids are born in that, you know, we make our purpose about our kids, and then they and then they leave the house.
Bill Gasiamis 1:11:18
And then it’s like, shit, what am I supposed to do now? My purpose, if my identity is so narrow, and it’s only ever focused on a needs to provide for my family, and for my kids, you’re going to be disappointed in about 20 years or so. And then you might have another 40 or 50 years to go. And you have to find another way to occupy your time that’s purposeful, and meaningful, and it might not be grandchildren because although grandchildren kind of come, they’re the ones that you’re happy to hand back.
Bill Gasiamis 1:12:01
They get somebody else’s problem. So that’s interesting. I’ve also kind of find that people fall into purpose at work, for example, they might start off in the first job they ever get, and then that job may lead to a promotion. And that may lead to promotion, they might even like their job specifically. But a pays well, that pays the bill helps them achieve their purpose of raising the family, if they’ve got a family if they haven’t, it’s where they create their communities where they create connections.
Bill Gasiamis 1:12:36
That’s where they, do all their lifing. And then they get to retirement or just before retirement or some crazy corporate takeover, or redundancy or whatever. And then everything they’ve ever done, the purpose for going to work and for living abruptly comes to an end. And then it’s like, I’m 40 Something I’m at maybe midlife crisis stage. What the hell do I do now? Like, who am I? How do I go about life without what I’ve known for the last 20 years, and I haven’t put any thought into, I haven’t put any thought to what comes after that phase of my life.
Bill Gasiamis 1:13:18
And I’ve been naive and thinking that that phase is forever a forever phase. It’s like, as if, as if something was going to last forever. And last that long, that I don’t have to put any work into thinking about what may come later or what or how I need to position you know, the, the parts so that they can serve me down the track. It’s like being it’s kind of living life without purpose, but thinking that you have one.
Bill Gasiamis 1:13:55
And then you realize I actually didn’t really have a purpose, I had a task and my task was to raise my children to pay the bills to support my family, etc. And then it’s like, well, what do I do now stroke does that stroke, illness, whatever it is, takes people from identifying as they did the day before, to not knowing how they identify not knowing any more who they are.
Bill Gasiamis 1:14:24
And not knowing how stroke or how illness, you know, can be blended in and made part of life’s purpose or, or life’s lessons or life’s blessings. And it’s just a real challenging and battling and can lead to despair can cause unnecessary mental suffering and anguish and, you know, without applying appropriate meaning to it can lead to despair.
Bill Lee Emery 1:14:55
Yeah, and for me, and you’ll be familiar with this term. It’s an evolving thing. So, you know, my purpose or the things that I found meaning in my 20s, or 30s is different from now. And in my early 70s, you know, my purpose and meaning is very different from 20 years ago, there are connections and threads along the way. But we are human beings, you know, we are evolving, we’re not a static thing I’m not 20 year old anymore, I’m not a 25 year old anymore or 35, so, we’re always evolving.
Bill Lee Emery 1:15:36
And so if we allow ourselves to, to step into that, and to allow change, and to embrace what is there, and what’s coming up, that is, for me much healthier than hanging on to my identity as the CEO of an organization, or this or that, or an actor or an actress, or whatever it might be, you know, and I was just thinking you’re in, we’ve been watching a series on on Apple TV, and it really got us engrossed. And there’s a couple of older actors there.
Bill Lee Emery 1:16:14
And you know, the story about, you know, old actors in the 70s and 80s, watching the movie of them 30 or 40 years ago, when they were young and healthy, and, and pining for how they used to be, and staying in the past, rather than embracing the fact that there might be at and gorgeous, and old and wrinkly. And what a shame that we, we sometimes go back into the past got a whole wish, I was just like this, you know, I’m the age that I am.
Bill Lee Emery 1:16:43
And I love the age that I am, I’ll, you know, I’ll never be this age again, you know, tomorrow, I’ll be a day older. And so, but I’m really enjoying my aging body. Well, some parts, but you know, sometimes I wish I could swim a little bit more or whatever, etc. but you know, that’s part of me also accepting my aging, my mortality, and not to fight it, but to go, but to bless it.
The Three ThingsBill Lee Emery 1:17:16
What’s that saying about old age is something that not everyone gets to have. So, I’m here on this listening to my heart, I really love my body, we have a really nice time on the inside of us. I have a beautiful partner, we live in a beautiful part of the world, we have a gorgeous community that we live in, there are so many blessings in my life. And Julie and I, when we go for a walk around our village, here we, we often say.
Bill Lee Emery 1:17:49
Okay, three things, what are the three things that we’re grateful for. And those things helped me to remind, sometimes of the little things. Just the little things that can bring so much joy doesn’t have to be a big thing. It can be a simple, simple thing. But that, to me brings more richness than some of the big milestones in my life. I’ve got to appreciate the little things more and more and more.
Bill Gasiamis 1:18:17
Gratitude is part of meaning like it’s one of those things that it’s the antidote to despair. It’s what takes suffering and mental anguish and mental suffering, and makes it less powerful and less able to take hold, you know, being grateful for the fact that you have a just a flower, just the flower that you noticed, you know, when you needed to notice it, so that you could take your mind away from all the other stuff you’re going on.
Bill Gasiamis 1:18:50
And to have that trippy moment where you noticed your plants and you’re going wow, like that’s amazing. That that’s something that you can be grateful for, because he actually made it possible for you to occupy your mind elsewhere at a time when it was really important and necessary for you to do so. That supposedly insignificant flower not only gives life to you, but it gives life to us because of that bees existed because bees exist.
Bill Gasiamis 1:19:20
They pollinate other plants, and they give us honey and we learn from them and and then birds exist because of that, like the whole thing is not little it’s such a big thing of such a massive thing. And it’s the ability to have the wisdom to notice that little thing, which is not little it’s actually actually very huge, you know, and it’s so beneficial to you in a moment where you needed nothing else.
Bill Gasiamis 1:19:57
You didn’t need medical intervention. You didn’t need If you didn’t need we were intervention, you didn’t need naturopathic intervention, you didn’t need alternative intervention, you needed a flower to notice. So that it can take your mind off it. I mean, what a gift what an amazing thing to have. That serves us. Yes, just for the sake that it grew there.
Bill Lee Emery 1:20:26
And thank you, there’s one thing when I have my first PET scan, and it was five days before I had the results, I was almost like having a near death experience and my awareness was like on maximum. And, as I was going through this, and there was no ordinary guy, I began, wow, it’s almost like, I’m high. And I want to help everyone to hold on to that state of consciousness, I want to keep this with me forever.
Bill Lee Emery 1:21:02
And I know that everything was passed, you know, I won’t have that same heightened state of consciousness. But I was able to go, Huh, here’s one thing that helps me get back to that. And that one thing was focusing on detail, small, infinitesimal detail. And I can go into my garden, and there’s a crape myrtle there and it’s flowering. And there’s ths big bees and little bees.
Bill Lee Emery 1:21:31
And I can just focus in on the detail of every single pedal, and I’ll be back, not may be in the same way. But I’ll take tap back into that state of consciousness, or wonder of nothing else in this entire world, except for that little petal, that little bee, that little bee in that little petal in their little dance together, and the whole world goes away. And that’s kind of like this, you know, kind of trippy space. And I go, that’s it detail. It’s not the big picture is the detail of small, small little things that can be quite trippy.
Bill Gasiamis 1:22:10
And in that moment, you’re not depressed, nothing, there’s no anxiety, there’s no past, there’s no future, there’s just the moment the present, and it’s the most ideal place to be. In that time, it’s definitely that time, when you’re in the doctor surgery, you might be thinking about what you’ve done in the past, so that you can stop doing that, so you can support your future. And that’s okay. But when you’re in the moment in the garden, and that’s really that time where everything goes away, and you can just be and that’s it.
Bill Lee Emery 1:22:53
The bees going, Yup I’m just gonna be.
Bill Gasiamis 1:23:02
I love it, I love it. I’m gonna ask you one last thing, because it’s great to see you kind of being back in this space, I feel like not because of what you had to go through with your health. But it feels like there was a bit of a pause between what you were doing when I knew you, say 10 years ago.
Bill Gasiamis 1:23:27
And then the middle kind of stage and then what I know of you now that to me, between you and me feels like there was a little bit of a pause between what I knew about you and how I knew you were going about life. But I knew generally what you’re doing and what you’re up to and how things were.
Bill Gasiamis 1:23:44
And you made a couple of posts in that first post that you made that really, that kind of brought you into my awareness again, was the one that you made about the seven weeks of your treatment, and then the work that you’re going to continue to do which we spoke about the men stuff. And then a little while later, you made this post on Facebook. And it was really deep and meaningful to me.
If You’re Not Following Your HeartBill Gasiamis 1:24:12
And I want to unpack it a little bit. Because when I mentioned it, some people are going to think, oh, yeah, that’s deep. Some people are going to think oh, well, doesn’t really mean much. But when we look into it, we philosophize a little bit about it it’s really cool. And you ask this question. And it went, “If you’re not following your heart, then where are you headed?”
Bill Gasiamis 1:24:41
And I know that when a question like that is asked by you, it’s not just a surface question. I know that there’s so much more depth to that and I know exactly where you’re coming from. But can we unpack that a little bit if you’re not following your heart where are you headed? What does that mean?
Bill Lee Emery 1:25:02
Okay, so I’ll tell you when this quote came from. And this is when I just been involved in mBraining as we both are.
Bill Gasiamis 1:25:16
Which is multiple brain integration techniques, if anyone wants to know what mBraining is just Google it, perhaps by the book, it’s called using a multiple brains to do cool stuff, it is one of the most profound books you’ll ever read. That being said, go ahead.
Bill Lee Emery 1:25:42
Okay, so it’s by Grant Soosalu, and Marvin Oka. And so I was just sitting and meditating. And, the phrase just popped into my head. And it said, and it was a question of myself of myself. So if I’m not following my heart, then literally, where is my head, taking me? And when I’ve allowed my head brain, to rule the roost, to decide my direction or life, decide what I’m going to do.
Bill Lee Emery 1:26:20
It hasn’t been a happy ending. And my physiotherapist around about the same time, said to me, when, when someone who is standing with correct posture, you will notice that their heart is slightly ahead of their head. So we are structurally and biologically designed to live from our heart. So in our heart is deep meaning is core values is compassion, compassion, for self compassion for others.
Bill Lee Emery 1:26:50
And our head brain and our gut brain are both there to serve our heart. So if I’m not following my heart, and I’m following my head, I’m going to be going into the jungle. And I’m gonna be doing what angsting and more suffering than I need to. And when I go in and ask my heart, hey, heart, what’s going to make you sing what makes you come alive, what brings joy is going to, it’s going to go into that place of compassion, compassion for myself first, and compassion for others.
Bill Lee Emery 1:27:26
And from this will come my direction, purpose and meaning, and joy and all those and fulfillment and satisfaction. So for a lot of people that I work with in the corporate field, you know, they’ve been driven by ambition, you know, by an idea might be fascinating. So the head brain, the gut brain kind of got together and cleansed this, what are we going to do in life, and they’ve gone through three divorces, their kids hate them, you know, their bodies in a mess. But they’ve got all these material possessions. Nothing wrong with those things.
Bill Lee Emery 1:27:59
But when they’re taken in place of what brings the heart joy, for me, that is true. Suffering and despairing. So it was really a question for me it was, so Bill, you’re going to follow your head, or you’re going to listen to what your heart wants. And it was a reminder for me to come back and check into my heart is what’s what’s filling you with joy. And, and when, when I connect with this in my head brain can get really creative on how to what to do, you know, organize the logistics, manage, research, whatever.
Bill Lee Emery 1:28:42
And then my beautiful gut brain, which is around boundaries, deep core sense of self can organize itself on my actions to deliver those things that my heart won’t and when I mentioned before that you know me and my body have a really good intimate relationship. You know, my head and my heart and my gut have a beautiful relationship with a really learned to come check in with each other. How are you going? What do you need from me? And so we had this little happy dance inside of us and I know when my head is leading with something.
Bill Lee Emery 1:29:18
But if it’s disconnected, if it’s directionalized by my heart, that’s fine. But if it’s going on a little journey, all by itself, I’m going to be in shit somewhere along the track that I had to bring myself back to does my heart is this what my heart truly wants? Because my heart can be fickle. The fickle you know, when I go to Bunnings, for example, and we go for take my heart rate with because I’ll want this and we’re all gonna have this and my gut brain going well, do we actually need it?
Bill Lee Emery 1:29:48
You know, like, we’ve got three already, do we really need another one? I guess not. So but underneath the fickleness is the deeper things, the deep and meaningful things so things that are connected to purpose, deeper, evolving purpose, you know what brings meaning what brings satisfaction, deep satisfaction, not superficial stuff. And for me if you know, and this was really a reminder of, if I’m not following my heart, then Where am I headed? And for me, I need, I need reminders, you know, I fish around and stuff for a while, but I still need reminders. What does my heart want?
Bill Gasiamis 1:30:29
You’re not perfect.
Bill Lee Emery 1:30:34
Despite what I told you.
Bill Gasiamis 1:30:39
It’s been really lovely having this conversation with you and catching up with you after some time, I reckon about five or six years, at least. Getting to be around you and learning from you, as a wise elder that you are. Was really a pleasure at the time, you know, I got a lot out of being in a room with you, having you at my place, you know, connecting with you with other brains and that it was really good. The one thing that I remember about you that I loved the most was your hugs.
Bill Lee Emery 1:31:23
Yes, I have a bit of a reputation for that.
Bill Gasiamis 1:31:25
And best hugs ever Bill.
Bill Lee Emery 1:31:30
Yeah, and you know, why? So I learned to hug 40 something years ago. And what I learned, the secret of a good hug, is not gender related. It it’s human to human. And it is breathing the same air as the other person. And being fully in my body, in the present moment.,with nothing else, my internal dialogue would be always nil. And I just, and I breathe, and I’d feel the other human being in front of me close to me, and I’d feel my human being. And it just be to human beings enjoying presence together that’s it.
Bill Gasiamis 1:32:32
You know what that experience taught me? It taught me that I was keen to get out of a hug pretty quickly. I was just coming. I was just doing the old come in, get it get out. And I remember having to kind of having to stay there with you.
Bill Lee Emery 1:32:54
I wasn’t gonna let you go.
Bill Gasiamis 1:32:55
Yeah. And then allowing myself to stay there and then experiencing the hug. And then going, when we’re in a room in a training room, or coaching, or when we were learning together, then it was like, Okay, time for the hugs. And I was like, okay, straight to, Bill, go over there and get a hug over there. Because that’s the standard, you know, that we all need to aspire to.
Bill Gasiamis 1:33:22
It was truly an interesting learning experience that to connect with somebody, you know, you do have to be out of your head in that moment. You do have to be present. And you do have to make it about the other person, as much as it is about you, you know, has to be about the other person. And it’s interesting to remember one thing about something somebody who is more than, you know, one thing above all else about somebody asked for to be the hug.
Bill Gasiamis 1:33:57
I don’t know anybody else for the hugs, you know, I know some people for their terrible handshakes and some for their overbearing, hard handshakes. But the hug is it’s a really interesting thing. You know, it’s kind of, it’s the one thing that Zoom, when I interview people from all around the world. It’s one thing that Zoom doesn’t allow me to do and it’s the one thing that I’ve hoped that I wished I could do more. But you know, we have this distance, and we have all the stuff that we can’t get that Zoom doesn’t offer, but it’s the one thing you know, it’s like the one thing.
Bill Lee Emery 1:34:41
Yeah. And that’s like, it’s pure connection. That’s it.
Bill Gasiamis 1:34:45
Yeah. Bill, thank you so much for being on the podcast.
Bill Lee Emery 1:34:50
My pleasure Bill. I have to say I always enjoy being in your presence. We have a good time. together in for me doesn’t matter the years passing of how often we talk. It’s just coming back to that playful five year old space.
Bill Gasiamis 1:35:13
Yeah, I agree. Thanks, Bill. Thank you, Bill. Thanks for joining us on today’s episode, sharing the show with family and friends on social media will make it possible for people who may need this type of content to find it easier. And that may make a massive difference to someone that is on the road to recovery after own experience with stroke. If you’re a stroke survivor with a story to share about your experience, come and join me on the show.
Bill Gasiamis 1:35:40
The interviews are not scripted, you don’t have to plan for them. All you need to do to qualify is be a stroke survivor, or be a caregiver for someone who has had a stroke. Or be one of the fabulous people in the medical field that help people who are stroke survivors. Go to recoveryafterstroke.com/contact fill out the contact form. And as soon as I receive it I will respond with more details on how you can choose a time that works for you and me to meet over zoom. Thanks again for being here and listening. I really appreciate you see you on the next episode.
Intro 1:36:16
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Intro 1:36:46
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Intro 1:37:11
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Intro 1:37:35
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The post A Heart-Centered Recovery – Bill Lee Emery appeared first on Recovery After Stroke.
Anat Baniel, the founder of the Anat Baniel Method, a powerful practice that takes advantage of the brain’s remarkable ability to change itself, for the better to heal body and mind.
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Highlights:
01:47 Introduction
06:26 The Two Main Pillars
09:46 Resistance To Change
15:38 Conditions To Activate Brain Functions
24:22 Proper Intervention
33:01 Safety First
52:39 The Variation Essential
1:03:08 The Importance of Enthusiasm In Rehabilitation
1:19:58 The Nine Essentials
Transcription:
Anat Baniel 0:00
You have rehab facilities for stroke? He said yes. I said the usual length of rehab is between three to five weeks. He said, yes. I said, you send away your patients at the point where there is no real detectable improvement, it sort of plateaus.
Anat Baniel 0:19
He said, Yes. I said, Now, the understanding of the reason for reaching the plateau, is the fact that the person had a stroke, correct? He said, Yes, I said, that’s where you’re wrong. And that’s where my work comes in.
Anat Baniel 0:37
The reason they need rehabilitation is because they had a stroke. The reason that they could reach a plateau is the intervention. They reached the outcome because of the intervention, and they reach that plateau, because of the intervention.
Intro 0:58
This is the recovery after stroke podcast. With Bill Gasiamis, helping you navigate recovery after stroke.
Bill Gasiamis 1:11
Hello, and welcome to episode 232 of the recovery after stroke podcast. To learn more about my guests, including links to their social media and other pages and to download a full transcript of the entire interview.
Bill Gasiamis 1:23
Please go to recoveryafterstroke.com/episodes. If you’d like to support this podcast, the best way to do it is to leave a five-star review and a few words about what the show means to you on iTunes, and Spotify. If you’re watching on YouTube, comment below the video, like this episode and to get notifications of future episodes, subscribe to the show on the platform of your choice.
Introduction – Anat Baniel
Bill Gasiamis 1:47
And if you subscribe in YouTube hit the notifications bell so that you can get notifications of new episodes as they arrive. My guest today is Anat Baniel, the founder of the Anat Baniel Method, a powerful practice that takes advantage of the brain’s remarkable ability to change itself, for the better to heal body and mind.
Bill Gasiamis 2:10
Anat is also the author of the book Kids Beyond Limits. And although marketed to parents of children with neurological conditions, be it from birth or as a result of traumatic brain injury. The book is rich in information that may help you while on the road to recovery after stroke.
Bill Gasiamis 2:29
Trained by Dr. Moshe Feldenkrais, and with high praise from people like John Gray, Norman Doidge, Arianna Huffington. And Jack Canfield, this book would be a great addition to your bookshelf. Anat Baniel, welcome to the podcast.
Anat Baniel 2:45
Happy to be here.
Bill Gasiamis 2:48
Thank you for being here. I’m probably three-quarters of the way through listening to your book, Kids Beyond Limits. And it’s interesting because the title of Kids Beyond Limits is I know, it’s been written for parents about their kids, but really, it’s also applicable to me and anyone else who’s had a stroke, or any other neurological condition that needs some new insights and new ideas, new ways of approaching recovery and healing the brain.
Bill Gasiamis 3:29
And also the other part of that which is like a new approach, or a different way of looking at healing the brain and recovering movement that was lost, etc. And I’ve got so many questions. But before we talk about the content in the book, which is so appropriate for my listeners, and people watching on YouTube, I’d like to ask you about how you got to be in a position where you’re doing the kind of work that’s helping people overcome neurological conditions.
Anat Baniel 4:08
Okay, so regarding the book Kids Beyond Limits I totally agree with you it’s about you know, how to facilitate for the brain to do its job when there’s interruption. Genetic or stroke, you know quite a few babies are born with stroke or gets stroke early on.
Anat Baniel 4:33
And then there’s the book for adults Moving To Life that you know, we’re actually going to publish soon a new edition so if people want to read about it in the more adult version, that’s possible. In a way it’s better for people who had a stroke, because it really deals with assault to the brain, Moving To Life is more in general how to enhance your life, not necessarily in the face of a traumatic brain injury.
Anat Baniel 5:05
So how I came to do this work, my training was in psychology, clinical psychology, I also have a degree in statistics, you know, because of interest also in the science side of things, but also always had interest in the brain. And as I was in my graduate studies you know, schooling to become a clinical psychologist, I realized that it was all very cognitive, it was very interesting, it was valuable, it served me my whole career.
Anat Baniel 5:53
And at the same time, what was missing for me was the immediacy of the body the immediacy of the kind of aesthetic experience and of movement that is so there for us all the time. And I search where I could study and I also made the about the brain, but there wasn’t much known in terms of actually impacting function directly thinking about the brain.
The Two Main Pillars – NeuromovementAnat Baniel 6:26
So I then remembered my studies of Dr. Feldenkrais’ movement work. Moshé Feldenkrais as a child and with my dance teacher, so I found him and connected with him, and trained with him to learn his method. And his method, has two main pillars.
Anat Baniel 6:59
One is movement, the other one is the brain. So actually, he was a scientist, he was a, physicist and mathematician, and you know, so I got all what I was interested in, covered in one person’s way method. And I worked with him. And first I worked primarily with dancers and musicians, and academicians, because that was my world.
Anat Baniel 7:38
And Feldenkrais actually was the one who got me to work with the first child, I didn’t expect to work with children with babies. And in about a year or two parents started hearing about the work and the outcomes, and more and more parents started showing up.
Anat Baniel 8:05
So the children started taking more and more of my time, and the dancers and high performers became less and less. And then also, I started working with stroke patients, adult stroke patients. And in the process of doing that, I looked into understanding what about what I do gives the outcomes that the clients were getting, and they were getting really, in are getting really breakthrough outcomes. And, you know, we can talk more about that, but this was the path.
Bill Gasiamis 8:46
We will talk about that for sure. Because I think it misses things, sorry. A lot of recovery after a stroke misses some things that I think now that I’ve read, most of your book is obvious. Now that I’ve read a part is very easily missed during recovery.
Bill Gasiamis 9:12
My experience in recovery is you have brain surgery, you wake up, you can’t walk, you go into recovery, and the people trying to rehabilitate you, the personal therapists and occupational therapists, they do a fantastic job, they get you on your feet, and they try and reinstate what was there before using the same method that was being used before I was unwell and couldn’t use my left side of my body.
Resistance To ChangeBill Gasiamis 9:46
So they kind of approach it with the exact same tools that they would have if I for example, injured my knee, or my toes or my ankle. When the challenge is actually not my toes on my knee or my ankle, it’s my brain. And they understand Neuroplasticity to an extent. But they understand in a very simplistic and basic way, which is enough for a lot of people to get over the line and get decent results. But I think they missed some critical components, we’re going to talk about those in a moment.
Anat Baniel 10:25
There is a resistance to change. And the resistance to change is not just this way, there is it, the word resistance is the correct word, but resistance to change. Also, on a biological basis. If you look at us, we develop habits. And the habits, we need the habits, we can’t function without habits. And the habits get grooved in they get automated, and our sense of safety and a sense of predictability.
Anat Baniel 11:03
You know, uncertainty is very disruptive to our sense of well being. So, in the habits form very quickly, and very powerfully. And we can change the habits, it’s a big part of what my work does. And that’s a big part of Feldenkrais’ work was doing.
Anat Baniel 11:24
Because how do you get the brain to not just learn something new, but to transition from what it is relied on until today, to transition and rely on your left foot, or on your right foot, you have a stroke, and all sudden you can’t rely on it? And very, very quickly, the brain changes itself reorganizes itself, so that you look to be able to transport yourself to transition yourself from point A to point B in a safe way?
Anat Baniel 12:02
And it doesn’t want you to use or doesn’t let you rely on that which is not reliable, and for good reason. But that becomes a very powerful habit very quickly. And because of that it’s so important what’s done immediately after stroke. And the kind the way that rehab is done is so important, because it can instill limitations very powerfully due to the way that the rehab is done.
Anat Baniel 12:36
And that’s the place where there’s in my experience, complete blindness and we can talk about that because it’s simple. It’s actually very simple. But it’s different. I was interviewed on another podcast last week. And at the end of the podcast, the interviewer said to me something that I never heard before in this way, and it was a wonderful, he said to me what you offer is very counterintuitive. And makes total sense. He said, and I never had those two things happen at the same time for the same thing.
Bill Gasiamis 13:18
With would completely agree. Absolutely 100% agree with that statement. And the reason being is because you talk about things that most people miss. And one of the things that you talk about is movement with attention. So we’re going through therapy, and although perhaps I’m in rehabilitation, and somebody’s paying attention to my movement, I am not being made aware to pay attention to the way that I’m moving and the way that I need to adjust my movement, right?
Anat Baniel 13:55
No, no, you’re missing something. I’m so sorry. And everybody needs it. And when I teach a training or a workshop, it takes three days of we been engaged in the process before people start really getting it. It’s not the attention to the instructions. It’s not even so much that attension to what you do you know, lift your arm you know, whatever.
Anat Baniel 14:19
It’s the attension to watch you feel as you do the movement and that is a huge job and that is the job that got Dr. Michael Merzenich to become a huge supporter of my work the rest of it to all the nine essentials and his research that we discovered because the one I knew it I made it my essential but when I wrote my book by colleague Dr. Neil sharp, I said to him can you go out and research to see if anyone in the research universe in neuroscience research has realize that movement, without attention to the feeling of self as you d, it does not provide change, or very limited change.
Anat Baniel 15:13
And if there’s an attention to the feeling of what is done as it is done, changes happen, improvements happen, the range of motion increases, spasticity reduces by the fact that it gives the brain information to improve what it’s doing the intention that it’s executing, as it’s executing it.
Conditions To Activate Brain Functions – Neuromovement
Anat Baniel 15:38
And this feels so weird, you know, it’s like, I don’t have to go 1 2 3 or stretch it or put electrical an thing, you just have to activate the capacity of the brain to feel, to notice the sensation, the feeling, because without it, we can direct ourselves anyway.
Anat Baniel 16:00
And that’s my main essential, that’s my first essential because movement, first of all, is my jewel. And I say that movement is the language of the brain. But then the question is, how good are you in speaking it or use it to communicate with the brain intentionally?
Anat Baniel 16:20
In the conditions and I should have brought it there’s a quote, where did I see? Oh, yeah, oh, yeah, I know where saw it. I can look for it in a minute briefly. If you provide the brain, the conditions that the brain needs, the conditions, that under which the brain functions well, then you get a brain that can learn and change in ways that otherwise it can’t. And when somebody had a stroke, we need to try and really optimize those conditions with which how we provide the interaction to the other person.
Bill Gasiamis 17:31
So practically, with regards to movement with attention, if I’m putting my foot on the ground, for the first time after my brain surgery, is the part when I’m putting my foot on the ground, and I’m paying attention what it’s giving me back what kind of feedback I’m getting from the ground or from the underneath of my foot. What specifically do I need to pay attention to?
Anat Baniel 17:58
Okay, so yes, but it’s a little more refined conversation, and there are important elements here. Okay. So let me just say a few general things that will then what I say can fit into it, okay? Because it’s a shifting in understanding, okay? The brain is an information system is a self organizing system, it’s a holistic system, when I move now, my brain has to come to every part of my body.
Anat Baniel 18:40
If I’m sitting like this, and I’m completely into something, and I’m totally safe, and I can maybe move this and not really care what happens to the rest of my body because it hasn’t impact my relationship to gravity. But if I’m standing up, I better know, if I move my arms forward, or otherwise I’ll fall on my face, right? So the brain is and it’s very complex, it’s very dynamic.
Anat Baniel 19:09
And it’s just they’re going back and forth you know, like, in it is the thing that gets us be who we are and organizes everything we do, right? Why am I saying that? In a minute, we’ll talk more about the essentials. But when somebody wakes up from surgery or just from the stroke, not everybody gets surgery after stroke.
Anat Baniel 19:42
And all sudden, your right leg doesn’t do what you want it to do. Right? The tendency or the arm the tendency is to try and interact with the parts that are not working like the arm or the leg. The most affected parts, which means are the parts of the brain lost most of the connections.
Bill Gasiamis 20:14
Yes.
Anat Baniel 20:15
That’s the parts of everybody zeros in.
Bill Gasiamis 20:19
Yes, correct.
Anat Baniel 20:20
That’s the last part I will touch. Think of it in terms of the whole body and think of a baby, a newborn. Every part of their body has twitches and stuff, but they’ve no voluntary movement, the first place that comes into voluntary control is basically the mouth tongue, the sucking actions, eyes, kicking, necks by the way.
Anat Baniel 20:50
But the child does not get really an ability to do much with the arms or the legs, like standard walk before, there’s very significant control of the center of the body. In very complex relationships, so I have now a granddaughter, she’s seven months old, I just got a video. And you know, I couldn’t even show it here, I can just put it up and show it. And you see she’s now holding objects, and she’s moving them and looking at them.
Anat Baniel 21:26
But the biggest thing she’s doing is rolling to her belly rolling through her back, rolling to her belly rolling to her back. And magnificent way that she does it, the arms and the legs are still kind of like the outcome of that as she gets more and she gets to sit, and stand. And I got my daughter to absolutely not do tummy time with her.
Anat Baniel 21:53
This is one of the again, another huge mistake in people tried to control an outcome before and skipping the process that leads to the outcome. So I’m talking about the process that leads to the outcome, I get somebody who had stroke one of the things that they will do first is go to their pelvis, their back their spine, because it’s much easier to recover.
Anat Baniel 22:24
Because let’s say, if somebody had a right side stroke, the left side, you know, the whole left side is impacted. But because there’s much less differentiation, there’s less density of mapping of the center of the body in very dramatic way, if you go and look at the homunculus, the sensory homunculus or the motor homunculus.
Anat Baniel 22:48
You know, the arms and hands are huge, and the thumb is enormous and the tongue is enormous. And then your tiny little fingers, the pelvis and a tiny little thing, that’s the back. So the lost proportion is much smaller, to recover function there is a lot easier.
Bill Gasiamis 23:08
Okay, so to give you an analogy you’re working with our strengths and not our weaknesses.
Intro 23:19
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, doctors will explain things that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 23:44
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website now, recoveryafterstroke.com and download the guide. It’s free.
Proper Intervention – Anat Baniel
Anat Baniel 24:19
Very much so but to understand the thinking. I say do not try to make somebody stand up when they lost their ability to stand up. Just like you will not take a three months old baby and try to make them stand up. And by the way, don’t do it with a nine-month-old either because if they don’t do it spontaneously, it means they’re not ready. They don’t have the underlying neural networks to perform it well enough.
Anat Baniel 24:50
So I’m working on helping that brain recover and it can’t go back if these are lost connections Since there are two things here, there are lost connections in their loss net networks, neural networks. Because the neural network is a lot bigger than a bunch of connections, you see, the motor cortex is associated the sensory which associated to the visual, which associated the large centers of the brain.
Anat Baniel 25:18
So but if you’re feeling nothing in the network, t he whole network is off. So if you bring back elements of the network, we just had been working with a 17 year old she had a tumor in her brainstem, which is like not a good place to get a tumor but anyway, when she was two years old they did a surgery and removed it.
Anat Baniel 25:47
She’s been getting therapy for 15 years. She’s 17, she’s by the way, the most potent or one of the most potent learners I’ve ever worked with. But she presented herself terrible kind of standing, but has two people to support her from the back, and she’s more spastic on the right side.
Anat Baniel 26:15
And her speech is (slurring) kind of like that. And it happened very young. So of course, in terms of schooling and everything got severely interrupted. So people also way underestimate her intelligence. Just two weeks ago, she has had a total of six weeks of sessions with us two weeks, and then they went back, they live in the other, you know, on the east coast, they came back for four weeks now.
Anat Baniel 26:44
So four-ish weeks into her thing. I and she couldn’t sightsee to one side, and, you know, can’t control. And, of course, we’ve already been me and my team, most of the work was done by my team, I had her on the floor, not on the table and I had her start doing a rolling movement through the side, in a way that a child, a young child tends to do it around age one and a half years to two years. I mean, that’s usually when they get that really well.
Anat Baniel 27:24
And very slowly, with the essentials, and at a certain point, she could just do it, and perfectly and quickly and very accurately in terms of the timing of what bends when and the way, the relationship of her head to the pelvis and the whole thing. And it was like, Whoa, it’s like her brain recognized it.
Anat Baniel 27:48
She did it until she was two or something like that. But she had no access to it. But when enough around it was built was recreated, reinvented by the brain. The whole thing came in. And we see that depends how much destruction there was. But I’m saying so much stuff. I don’t know if people can follow that. But the point is, you start where the person is, if the person is the person who had stroke or brain surgery, or brain surgery after stroke is not able to stand themselves up.
Anat Baniel 28:36
You might have to them up for medical reasons. There was another 26 year old woman friend of mine, a female athlete that had a horrible she did like a performance on bicycles mountain, and just smacked her head terribly, and so on and so forth. And, because of the drainage that they wanted the swelling, they needed her upright, then support her fully and hold her up fully, but don’t ask her to stand. Don’t expect her to participate, right? And you start working lying down because we learn to stand up line down.
Bill Gasiamis 29:21
You explained my whole experience with the right side, brain damage and then the left side deficits. It’s exactly what happened. And one of the first things that happened to me, which was extremely uncomfortable and really frightening, even though I went through the motions because I was told that that’s how I needed to be rehabilitated, was I was attached to the harness which was attached to the ceiling and I was like a puppet.
Bill Gasiamis 29:51
And that’s really uncomfortable in the crotch. And then I had one person on each side of my body moving my left leg for me into the position and into the right, and then the right leg and so on. And it was really, I have a photo of it, it was such a weird experience to be harnessed to the ceiling.
Anat Baniel 30:12
And did you find it helpful? Were you able to start standing better afterwards?
Bill Gasiamis 30:17
No, that took another two or three weeks for the standing to happen. That was probably two or three days after surgery, but the whole time, I needed to be the person who supported myself, because then they put me in between the two parallel bars, the two horizontal bars,and I had to hold myself up with the left side, again, of my body on my arm, which wasn’t working properly, the whole thing was completely dysfunctional and not really comfortable. And it was really scary. And I was afraid I was going to fall and my fear was getting in the way of my excitement to be there. And to participate in my in my own recovery.
Anat Baniel 31:10
I want to say that between doing what went through and doing nothing. I think doing what you went through is absolutely the thing to do. Correct. So it’s not like, Oh, you shouldn’t have done the rehab that you did. And it’s very important to say that. I mean, if you were just left lying down, I don’t want to even think what it would have been like.
Anat Baniel 31:41
However, we’re talking about the future. We’re talking about possibility. The same people that gave the dedication, you know, they learn to do this that give their time. And there’s the funding for it and the institution, that whole thing can be upgraded in a quantum way.
Anat Baniel 32:06
And that’s what I’m after. So it’s not about bashing what the people or what is being done. Even though it might sound like I’m doing that, it’s not that, it’s my passion is about it’s kind of like, if you want you need to get from the East Coast to the West Coast, you want to visit your family or to go something important.
Anat Baniel 32:35
But you only have a horse and the cart. And there are no roads paved. So we don’t want to do the horse and buggy version of crossing from the East Coast to the West Coast. We want to take the version of the you know, really good airplane to get us there.
Bill Gasiamis 32:56
The upgraded version, and that’s exactly it in order to feel safe.
Safety First – Anat BanielAnat Baniel 33:00
It’s more than an upgrade, it’s transformational. And by the way safety is most important, and you were obviously able to benefit. I work a lot of people that really didn’t. And because we’ve been working on a research proposal on stroke, we have studied the field, you know, and we haven’t looked at it for two years, you know, COVID kind of stopped everything.
Anat Baniel 33:32
So maybe there’s more stuff that we’re not aware of, but the statistics of success and failure in recovery from stroke. And, of course, what is considered success, I wouldn’t call it success. But the rate of success is really, really, really low. I mean, people don’t get back to being independent and functional in a sufficient way. You’re doing very well.
Bill Gasiamis 34:03
I agree. In order for me to feel safe. I asked to do my rehabilitation in a swimming pool. Because I didn’t need to be attached to the ceiling. And I didn’t need to be afraid of falling over. And it was a real godsend.
Anat Baniel 34:20
So you asked for what?
Bill Gasiamis 34:23
Rehabilitation in the swimming pool.
Anat Baniel 34:25
So you just did it without being hanged from the ceiling.
Bill Gasiamis 34:29
Yeah, I was in the swimming pool. The water was supporting my weight.
Anat Baniel 34:32
Oh, that is the best thing you could have done. Fact is we say that in my work. If I could do it all in water. Everybody will get better faster.
Anat Baniel 34:43
Yeah, right. Okay.
Anat Baniel 34:44
You take it with a gravitational demand. You see, lying down is the closest approximation to removing the demand that the gravitational field puts on the body in terms of balancing everything. So This was brilliant. I mean, this is actually, we used to have a petitioner that I trained, that did work in the pool with mostly with children. So we used to send our clients to also work with her. Because it is like the optimal conditions initially in the rehab process. I mean, it’s fantastic.
Bill Gasiamis 35:26
It worked, it was disarming, I was able to become a very different participant, a very different patient in that swimming pool compared to the one that was outside the swimming pool. I didn’t have the words to describe what you just described, about enhancing the methodologies used right now to rehabilitate people.
Bill Gasiamis 35:52
But that’s what I felt when I’m reading the book, when I’m listening to the book, I’m, I see your nine essential steps towards supporting somebody in their recovery. And, you know, we’ve already spoken about movement with attention, essential one, but essential two going slow, even though I was asked to go slow, there was an emphasis put on the benefit of being slow because I wanted to get better quick, I wanted to recover fast, I wanted to get out of rehab quickly.
Bill Gasiamis 36:28
So when they were slowing me down, which was an amazing thing. Now I understand it’s an amazing thing. I was getting frustrated and annoyed. Because they wouldn’t let me walk on my own sooner. And it was like, you say it’s not safe for you, and you’re not there yet. And they just didn’t emphasize certain things that they were doing. And I’m not sure whether they deeply know the benefit of being slow.
Anat Baniel 37:00
The being intentional. And a lot are not asking to go slow. They’re asking to go fast.
Bill Gasiamis 37:06
I yes you know, what they want you out of there quickly, because it’s a public system, you’re filling a position. And they want to make sure that they can get the next person in, and there’s not a big wait etc. So, tell me a little bit about, you know, the benefits of slowness, and being intentional.
Anat Baniel 37:25
Let me say something that maybe will make it very clear right away. Fast, we can only do what we already know. That means the connections are there, the myelination is there, the signals golf quickly, you know, the electrical signals move quickly. In the beginning of something is new, it’s not grooved in yet what we say grooved in which means the, the neurophysiological process of creating the connections and the communication between the cells that can go fast.
Anat Baniel 38:05
So when somebody has a stroke, a bunch of those communication channels are gone, right. And you need to create new ones. But when you create new ones, if you put the burden on fast on the new thing, it gets inhibited. And it reverts to what’s there. And what’s there is the way you show up after you had stroke, that is the existing things that you have whatever is left over.
Anat Baniel 38:39
And, one of the things that kicks in right away is spasticity. And in spasticity is the result of loss of differentiation of loss of connections. So things deceives the baby when it’s born, it can only do this or this with the hand it’s either all flexion or letting go flexion letting go it doesn’t have this this is billions of connections, billions upon billions of connections to be able to do that.
Anat Baniel 39:09
Okay. So so you get smacked on the head, blood whatever. And you lose those connections. When you give the intention it activates what it knows but the whole area that has been affected can only do one thing it is not differentiated anymore more we need to work on differentiation I just said she’s became a very close friend Jill Bolte Taylor, I’m sure you know the name.
Anat Baniel 39:41
And she did my training and she wants my work to get out and anybody emails her just she says go to Anat go to Anat do the Anat Baniel Method. And we’re all experiencing the the difficulty to bring the novel way of thinking the novel way of practicing rehabilitation into the world. And, she says to me Anat it’s all differentiation or bottom line it’s all differentiation, I said, Hello, good morning. You know, that’s what I’ve been telling her enough for, I don’t know, 8-10 years.
Anat Baniel 40:17
So what happens when you go fast? You get the outcome on your attempt to go fast, you get the default of what’s available, what’s available is specificity. And then guess what the brain group, you know, learns its experiences, that becomes the patter. That’s why I said to the head doctor, a bunch of years back of all the Kaiser, you know, medical system. And I was invited to speak to him privately in a dinner by another doctor to explain to him my thinking about brain change, and its relevance in medical intervention.
Anat Baniel 41:08
And I saw that he wasn’t quite groggy or whatever, so I asked him towards the end, I said to him, you have rehab facilities for stroke? He said, Yes. I said, the usual, let’s just talk about ischemic stroke. I said the usual length of rehab is between three to five weeks. He said, Yes. I said, you send away your patients. At the point where there is no real detectable improvement. It’s sort of plateaus. He said, Yes.
Anat Baniel 41:50
I said, now, the understanding of the reason for reaching the plateau. The reason for that is the fact that the person had a stroke, correct? He said, Yes, I said, That’s where you’re wrong. And that’s where my work comes in. The reason they need rehabilitation is because they had a stroke, the reason that they reach a plateau is the intervention. And that is, now they reached the outcome, because of the intervention. And they reached the plateau, because of the intervention.
Anat Baniel 42:33
I said, you shift some of how they do what they do, you will have a completely different trajectory of outcomes. That is what my work is all about. And that is what my vision is all about. So slow is important. Because it allows the person to feel, it gives the time and the space to feel what is going on that goes into movement with attention to what you feel. So if you ask somebody to move fast, or you move fast with them, you kill off the ability to do that, for the brain that are the conditions.
Anat Baniel 43:20
That’s what Michael Merzenich realize when he says in the foreword to my book, that how surprised he was to find me coming from a completely different direction. Defining the same understanding of what gets positive neuron, you know, branch age to happen is 30 years of neuroscience research, except by combining those and bringing it to rehab is a whole other story, which you’ve talked about.
Anat Baniel 43:52
So then I want to mention a couple other essentials, because it’s so quick to once you understand that you want the brain to perceive differences, because it’s one way perceived differences. That’s the information. The brain is an information system. It’s not a mechanical system. Stimulation alone is not information. Stimulation is required for there to be information. The brain generates transformed stimulation into information, it can work with by perceiving differences.
Anat Baniel 44:33
So if you move me really fast and hard and it hurts, and I’m afraid I’m gonna fall, I have no idea that brain is very global, undifferentiated chunks of information, which he says I’m in danger. So you hold your breath you stiffen your chest your arm gets more spastic something may happen and maybe you got your son into water. I mean you’re like in any intuitive genius, because this is brilliant. Now, next essential, reduce the force.
Anat Baniel 45:12
Because it’s a physiological law. This says it’s Weber-Fechner law that in order to perceive a difference, or perceive an increase or decrease in the intensity of a stimulation, the more the base stimulation is intense. The greater in a logarithmic equation, that means it’s like this, it just jumps up. So when it’s this stimulation is very faint, not so faint, you don’t perceive it but very faint, you need very little edit stimulation to notice the difference.
Anat Baniel 46:01
So if you’re in a dark room, and somebody puts just a little bit of light, you notice, you turn the flashlight on, you jump, right. But if you are in full sunlight, and somebody behind puts a flashlight, you wouldn’t know it happened. It happened but you wouldn’t know.
Anat Baniel 46:23
If you’re talking to somebody, if there’s a very light sound around you, like party, you were in a party and people drink usually when they drink, they get loud, you sit in a restaurant, you can’t hear what people say, because it requires for somebody to scream and God knows what level right and at a certain point, it just doesn’t work, you just don’t perceive it.
Anat Baniel 46:49
And that is really really a huge deal. Because once people have a stroke they get spastic, the spasticity itself is already very, very intense. So I put you lying down, I support your head. And I do not activate, I look to avoid activating the spasticity, because let’s face it, you will reduce your sensitivity. And then the whole exercise from my point of view is ridiculous, and a waste of an opportunity. So I leave your spastic arm, I leave your spastic leg, but I go and I just move your chest in certain ways that doesn’t require much differentiation.
Anat Baniel 47:41
And I just have taken note, there is a documentary about my work called A Life Unbound. First half is about a small child. Second half is about a 27-year-old young woman that had a stroke. And she, you know, aphasic and stuff, beautiful gal was a cheerleader for the NFL, sort of an athlete, terrible stroke, and they didn’t discover her for 36 hours. You know, so massive damage.
Anat Baniel 48:17
And she came when she was done already with the rehab. And in the very first session I did with her. She went with her father, they went to the hotel. And it was the first time that she felt her chest and her face since the stroke I didn’t even know that, I don’t know what the outcomes are going to be. But I start talking to the brain and go “look, look, you could do this, you can do that.” So reducing the effort. Now they’re hanging you from above.
Anat Baniel 48:53
You’re not a bird. So your whole life, everything is from the bottom up the baby’s like flat on the ground, then it rolls then it starts distancing itself from the ground until it comes to standing. And of course it’s an all four so it has four points of pressure, and then it comes all the way up. And it’s the information from the feet that the brain uses to balance you not information being hanged.
Anat Baniel 49:26
So this alone, I mean, it’s a variation of movement is okay but not as the basis. So reducing the effort in the force, in the movement itself is so important. I will not try to get somebody who had a stroke or any other kind of TBI to regain function in an upright position or semi upright position. I will get the brain to start restructuring itself, rebuilding itself or reorganizing itself from its line position.
Anat Baniel 50:03
And the most comfortable line position, which is on the side, bent more like a embryonic position. And that’s why I said water is so great because it’s supported from all directions, almost all directions, you don’t want to drown, and then comes variation. And variation is magical. Because people know what you lost. So they asked you to do the thing you lost. You can do the thing you lost, because if you could do it, you’ll do it.
Anat Baniel 50:39
I may start this insane thing. But this is how you would learn. Because if I don’t tell you what to do, did you tell a baby how to do all the movements? Of course no, you don’t, it’s the organic progression. So variations is such a rich source of information to the brain, intellectually, physically, emotionally. So if we can do something, one of the things that I do with people is have them fail on purpose in many different ways.
Bill Gasiamis 51:16
Say that again, fail on purpose in many different ways.
Anat Baniel 51:19
Fail on purpose in many different ways. I worked in the beginning, before I started doing so much work with children. I worked with some of the world’s best known classical musicians, conductors, wellness, players, you know, pianist, hall orchestras, I worked with the San Francisco orchestra, I worked with a Tanglewood Music Festival and their orchestra and some Seiji Ozawa, I mean, you name it, they worked with these people.
Anat Baniel 51:53
And not many of them are brilliant musicians, but they were trained, not following the essentials. They were supposed to hold the violin a certain way they said, so they developed repetitive injuries and so on. And I worked with a member, Chelsea a British brilliant cellist that could hardly play anymore. It was entangled. And I had only 20 minutes with him. It was a demo. So I set him down. And I did it also with a very well known cellist in a quartet, a very well known European quartet, I did a similar thing with him.
The Variation Essential – NeuromovementAnat Baniel 52:39
I had him take a very, very simple kind of music, you know, like, Twinkle Twinkle, Anna Magdalena Bach thing that he wrote and I just take a phrase and they’re brilliant musicians so for them that alone is a huge variations because hey, I can play Schubert I can play this I can play that.
Anat Baniel 53:01
You know, I go I know you can, but we’re going to do this, you see, reduce the effort, reduce the intensity, and I had him hold the cello. But with a ball, imaginary ball, so he couldn’t really do the movements, right. And you activate the imagination, which is of course one of my essentials. And then I said to him just feel like you really loved it and just the German guy I said to him play it raw. And it was nothing he could play then he had pain here.
Anat Baniel 53:39
And then I said to him, play it badly. At first he couldn’t grasp what I told him because since he was a little child, he was always taught played a certain way to play it correctly. I said play badly. And he just couldn’t do it. He was so rigid. And I said do you teach little children to play the cello? He said yes. I said do they play badly sometimes? He said sure. I said Do you remember any of the badly played things?
Anat Baniel 54:11
He said sure. I said imitate it, so he did he played it badly. And then I asked him to play badly the second time a third time fourth time. While he was playing badly I did all kinds of movements a lot of different differentiations variations with the shoulders so he really played badly because he was holding the ball. The young guy didn’t even bother boy does something different.
Anat Baniel 54:34
But anyway, so it went like crazy. And when I asked him to do the fifth badly way, he couldn’t think of anything I said that’s okay 4 was good enough. So now just play. Two things happened. The pain was gone. And it stopped him from playing. I mean, he was afraid he was losing his career. You and the sound the tone was so spectacular. I heard it, he heard it. He was like stunned. Variation the brain needs elements with which to work to put together the thing you’re trying to accomplish,
Bill Gasiamis 55:23
I understand exactly what you’re saying I just me, re expressing it back to the audience in my own way is very difficult. But I know what you’re saying I came across many, many years ago, an artist who had lost the ability to paint because the because you’re describing with the cellist exactly the same problem that the artist had, for an entire lifetime, the artist was using their hand to paint and put ink on a piece of paper or canvas a certain way every single time. And what they discovered after many, many years was that there was some kind of a tremble in the hand, which was not the type of tremble that your associate to Parkinson’s or anything like that, because it wasn’t in any other part.
Anat Baniel 56:20
That’s what happened to real Fleischer, I worked with him. I mean, that’s what happens to a lot of musicians that have Sunday have involuntary spasticity. And yeah, I mean, I worked with hundreds of musicians. Yeah. Men. And, and it’s the biggest mistake in teaching music. You imagine you take a child, tell him to hold the violin, you say all it this way, now hold it this way.
Anat Baniel 56:43
Now, put it a little here, make it a little uncomfortable, not try to play this way now tried to play these will not lie on your back. And I worked. I mean, I was asked to do it professionally. But it wasn’t I didn’t have passionate about I work with golfers. I did a few things with golfers. And I just had them do. It did also move a whole movement lesson on the floor, I really needed to get their brain to just wake up and start operating on a higher level.
Anat Baniel 57:11
But then, because the brain itself when you give it the essentials becomes that’s what merzenich wrote, you know, in the back of my first book, he wrote that my work helps the brain become a stronger, better brain that does its own job better and its own job is to learn is to put things in a way that they weren’t there before.
Bill Gasiamis 57:36
Is it to find many, many different ways to get the same outcome. For example, the painting using the brush.
Anat Baniel 57:44
In many different ways to execute the same intention.
Bill Gasiamis 57:47
To get the same result?
Anat Baniel 57:49
Not to get the same result. We don’t control the result. We try to execute the same intention, in different ways. And I’ll give you a bigger extreme. My father, I just my book moving to life was just published. My father was a brilliant researcher, right. And there was something that if they build a whole plant to produce the thing that he invented.
Anat Baniel 58:20
And they had a big problem doesn’t matter the story they but something was happening that they didn’t expect. So that my father was sitting on a computer trying to resolve the problem, right? Chemists, and he’s working and he calls me he says I sat for two hours and I could not figure out a way to solve this problem. But he said, but I just read your book.
Anat Baniel 58:44
And I thought about the variation essential. So intentionally. He said, Oh, let’s try this. And he knew it wasn’t going to work. You know, sometimes when you’re big expert in something, you know, he said, but I took myself through the process of failing. He said in 10 minutes, I have the solution.
Anat Baniel 59:07
That’s how extreme it is, you can know it’s not gonna work but by the fact that you give yourself the experience of the process. Because in the process of failure, they’re always useful elements for success? So you create, you generate a lot of mobility and freedom and options for the brain to integrate from those different approach to create something new.
Bill Gasiamis 59:37
It’s like Edison. The story about Edison failing 9999 and then learning the one.
Anat Baniel 59:45
Yeah and the good thing is that most of the time you don’t have to fail 10,000 times. You really don’t. I mean, this will 70 new role, or the mother of my friend it’s heartbreak but you know, they were trying to spend her up, but not just to get the drainage, but they were doing it it’s part of physical therapy.
Anat Baniel 59:45
And, it’s devastating because if she knows what’s happening to her, she’s gonna be traumatized realizing how much she is lost or believes she is lost. And if she’s not getting what’s happening, what are you doing? And so I gave her the courage to stop it. And she’s not a practitioner, but I showed her on Zoom, very gentle few things, she couldn’t touch anything around the neck and you know, too much injuries and stuff.
Anat Baniel 1:00:37
But to do some very simple things around the chest and the pelvis in the feet, because the feet it reflects in the brain so much of what he does, when we walk in standard and so on, imagine an athlete she has more than most people. And I told her to do it so she could feel whether her daughter feels there’s a way to know if when you touch somebody, they’re feeling it what I call movement with attention.
Anat Baniel 1:01:15
And I said, then don’t do more than seven minutes at a time. Because if it’s not helping, don’t exhaust her system. And if it’s helping, don’t exhaust her system. So you see, that’s another thing, don’t exhaust people and let them sleep. That’s Jill Bolte Taylor, her mother, a big part of what worked is because she’d let her sleep and then little units you realize, when she’ll start little units, that was like ingenious on the part of her mom.
Anat Baniel 1:01:46
So she did that, in the next day, the girl was able to stay and hold up in a hurry to her head. Not 10,000. Now does she need a lot more for recovery, of course. But you see real change the girl that I don’t do that now they’re going home for a month, and they’re going to move for a year to be next to us, because we want her to catch up on because she’s brilliant. I said, this girl is so intelligent. And she grew into being very limited, because people didn’t see that she was intelligent, because she couldn’t respond to the way they were trying to help. You can hear I’m just crazy passionate about this.
Bill Gasiamis 1:02:29
I can. That’s why I’m letting you talk and for people listening, this is going to be a podcast that you have to listen to again, and you have to actually get the book because the book is extremely well written extremely succinct, and to the point and I get so much out of it. And, that’s why I am a bit in awe, and I’m a little bit overwhelmed at the same time because I’m learning so much. But we’re only spoken about three of your nine essentials, we’ve spoken about movement with attension, about being slow about variation. And we don’t need to talk about all of them.
Anat Baniel 1:03:05
And the reduction of force reduction.
The Importance of Enthusiasm In Rehabilitation
Bill Gasiamis 1:03:08
And reduction of force. But we don’t need to talk about all of them. However, I want to definitely talk about enthusiasm, because this is something that can be lost on survivors of stroke or traumatic brain injuries when they’re going into rehabilitation situation because there’s, like I was in a little bit of fear. I wasn’t enthusiastic about being hung up.
Bill Gasiamis 1:03:37
And, being rehabilitated in the form of a puppet. Although I understand why people were doing it I don’t have an issue with the way I was rehabilitated. But reading this, I see the missed opportunities that could have potentially been there. So tell me about the importance of enthusiasm and not just of the person going through the rehabilitation, not just the patient.
Anat Baniel 1:04:04
Okay, let me tell you what I mean, when you say ASAN, which really goes with the whole idea that the brain is perceived differences and the motional relationship or the relationship between learning and emotions. Okay, that’s really the essential that kind of like, really, that’s what’s behind it. So we reduce the force, we slow down, we focus on what we feel as we move. And then we notice that I’m just giving you an example. It’s just an example. That yesterday I could only move my arm this much rotated, let’s say, and now I’ve done this and often it rotates this much.
Anat Baniel 1:04:57
Further, and maybe lighter, always When it goes like that better, it’s lighter, easier, more pleasurable, that always happens, there’s the way that the brain goes like check like it works well. But I need to do this, I don’t know, for tennis for something. So I’d go like this. But because it’s not the whole thing, I’m going to either not notice it or not give it importance. The brain gets gazillions of units of experiences every day, right?
Anat Baniel 1:05:34
But some things get memorized. You know, or grooved in very quickly. And other things just like dissipate, right, they don’t release stay. One of the ways, there are two ways that are very clearly the way the brain goes like, this is important in the neurophysiological processes of grooving it in very quickly.
Anat Baniel 1:06:02
One is when it’s really dangerous, or painful, or scary, that it compromises our sense of safety. Okay, the other one, when it’s really great, really pleasurable, distinctly better than anything else until that moment, positive emotions. So both of them have a lot of power, the negative has actually more power because it’s like survival.
Anat Baniel 1:06:32
When something good happen, and you go and you amplify, do you let yourself feel enthusiasm. And the best place to start practicing enthusiasm is maybe a little bit outside of yourself. So you go to the grocery store, and the checkout person is a has a nice buckle on their belt.
Anat Baniel 1:06:59
And you go like, Oh my goodness, I really think this gorgeous, and maybe you even tell them or, or I mean, you just let yourself be an amplifier of the positive and the seeker of the positive not Pollyanna, not denial kind of nonsense. But a sick. And the my students that improve the fastest are the ones that get most kind of that ladder of well being.
Anat Baniel 1:07:35
Now the story comes, I worked with this little girl she was diagnosed really, really bad. She had real ish stuff with a brain, okay. She changed every lesson. And of course, the practitioner, the more the practitioner can feel subtle changes, the more powerful and useful they are to their client.
Anat Baniel 1:08:08
Because if I work with you, and you’ve changed just a little, and I don’t notice it, and I keep going as if it didn’t happen. Missed opportunity. If I notice it, and I go with you, you notice that you go with me, I noticed you go with you. And we’re running forward together, right? So but it’s not like oh, yeah, you’re great because that externalizes I want the experience to be internal.
Anat Baniel 1:08:35
So it’s very quiet, it can be totally non-verbal, we train parents to not say good, yes, to just feel it inside, because one of the parents would bring her and every little change, got them to feel hopeful and grateful and happy. They saw that is going the right way or possibility. The other parent actually had the reverse reaction basically, because the changes were so “small” but they got despaired.
Anat Baniel 1:09:21
And I started noticing and then I noticed it also other places. So I realized it’s real it’s not just me fantasizing. I realized that when she was with one parent, everything she changed really fast. I mean, the progress was just the other parent it was like with clay. And after a while, I asked the one parent that felt good about the process, the little changes to be the only one to bring her two years until that the changes were so significant that it didn’t matter which parent came.
Anat Baniel 1:10:01
I mean, she’s arrived, at such a place that it was fine. And I’ve had it with other other people, I’ve had it sometimes with therapists, you know, that come to watch. And if they were, like had difficult feelings or competitive feelings, I felt it immediately in the channel.
Bill Gasiamis 1:10:26
If I remember correctly, with the enthusiasm, essential, and that particular chapter, the parent who was getting better results with the child was saying, Look how far you’ve come. And then the mother was saying, Man, they’ve got so far to go or something like that.
Anat Baniel 1:10:52
It actually a lot more immediate, it’s in the moment. So we’re now working with a wonderful gal, adult, the older side who had a devastating stroke, went through three years of intense, intense, intense, you know, rehab, and then found us a and moved here, to be able to work and I don’t know how she was before the stroke, but she changes. But she really is still very impacted, but by what is not there yet.
Anat Baniel 1:11:37
I mean, she remembers how she was before. And, she keeps comparing yourself to how she was before. So when she’s with us, she feels the change and she’s delighted. But then when she doesn’t get our emotional support, she sinks into the sense of the comparison. And she’s paying a high price for it, I mean, she is progressed and she’s doing a lot better and, also during therapy, they told her whoever was their therapists kind of scared her about a few things.
Anat Baniel 1:12:15
If you don’t hold that arm your shoulder with the disconnect, if you don’t do this, this will happen. And it’s kinda like it’s already not happening. And already there are music is free and already down, he’s hanging and it hasn’t fallen off the shoulder. But but there’s, there’s a huge bias towards the fear actually, for her the the triggers the fear. And, so enthusiaism I wrote the book for the parents of the therapist, but in this case, my listeners, the adults who are themselves the subjects.
Anat Baniel 1:12:57
So it is really a practice, not to go into denial not to say that everything’s fine when it’s not denial is not my thing. However, the change is really the change. And because it’s a quantum system, the brain is not a small change, or a large change, it is a change or no change. It is a desire change, or an undesired change, these are the distinctions.
Anat Baniel 1:13:26
So if it’s in the direction you want, if you feel so you know, when I work somebody, and they get off the table, and they are free of pain. And then they say, well, let me see if I feel the pain. I said no, if you look for it, you will find it. Especially if you have had this for a long time, three years of you know all the limitations and everything. They’re there, she can always go back to it. That’s not something that I mean, it’s just like you can go back to crawling on all fours.
Bill Gasiamis 1:14:01
You can change your physiology so that it’s making pain again.
Anat Baniel 1:14:06
We don’t lose the old patterns. We develop new ones.
Bill Gasiamis 1:14:09
Yeah. And you replace the old pattern with a new one.
Anat Baniel 1:14:12
Yeah, I will need to get off really soon. I mean, I’m always happy to talk with you and your audience again. Listen, I would like we are going to be showing the Life Unbound. It’s a very, very inspiring we have Merzenich on it, we have Martha Herbert, we have Jill Bolte Taylor, we have five scientists that say why they think what I do is cool. I mean that approach makes sense.
Bill Gasiamis 1:14:56
Yeah. I agree. The approach makes sense.
Anat Baniel 1:14:59
And then I’d love to let your people know that so they can watch it.
Bill Gasiamis 1:15:05
Yeah, absolutely, I will. I really appreciate your time, I really appreciate the fact that you do the work that you do. Your book is amazing, I haven’t finished it yet, I’m going to finish it. And it really has changed the way that I can now kind of express the path to recovery, where, where before, it didn’t feel like I was doing the that I had the best opportunity in the version of recovery that I was given, although I’m very grateful for it.
Bill Gasiamis 1:15:41
I see how it can be definitely enhanced by adding some of the amazing essentials that you spoke about, you know, and that we’ve already discussed. So it does do that, like your method does make me feel and I think I would have benefited from having those additional essentials and that different counter intuitive way to look at recovery, all the all those years ago.
Bill Gasiamis 1:16:11
But that being said, it doesn’t mean it. I love what you also said earlier, which was that the Recovery Version that I was giving is still amazing in the face of having no recovery support. So it’s brilliant, right? And I’m very happy and grateful for it. This is a great tool to enhance the things that other people are doing.
Anat Baniel 1:16:34
And I would go further. It’s not just enhance what they do is different. What we do is to transform how we do it. We did move from buggies to airplanes. So they’re still transportation, it’s the recovery. But he said different universe. It’s important part step in the evolution of humankind.
Anat Baniel 1:17:05
It’s different humans, humans that operate that way use their own brains, you see, you can’t help somebody else to go gentler and do variations. And if you’re stuck and rigid and repetitive and limited and forceful, you you have to be doing the essentials from within yourself. So your awareness in I one of my essentials is awareness. You know, I mean, it’s truly an it’s an evolution of the use of self is what was given to us. You know, look at us, that we have ways to go, but yeah, so it’s not just improving what they’re doing. It’s different.
Bill Gasiamis 1:17:58
Yeah. And I love that part. I love that part that you said it’s also about us understanding the nine essentials, that people recovering. So that we can apply them.
Anat Baniel 1:18:08
With us the nine essentials with us exercising, yeah, you can’t do them. You can’t bring them to someone else. If you’re not doing them because then you’re not doing them you’re doing the opposite or different. It’s a transformational, it’s a shift. It’s not a little editing. That was one of the things that people have asked me occasionally, well, why don’t you just, you know, collaborate with the PTs, as I said, because it’s just like asking me to speak, you know, Chinese when I’m speaking Hebrew is a different language. It’s a different thing. And it’s hopefully, the future not too far away from now. That’s the point.
Bill Gasiamis 1:18:54
Anat, thank you so much for being on the podcast.
Anat Baniel 1:18:57
Thank you for allowing me to speak what I really think. And thanks for all you’re doing and for caring about your people.
Bill Gasiamis 1:19:08
Thanks for joining us on today’s episode. This is an interview that you must listen to more than once I believe. It is a very deep conversation that I must admit even I struggled to have the words to bring out what I wanted. Anat to discuss and tell us about so that you can understand the importance of the work that she’s doing and how she helps people.
Bill Gasiamis 1:19:34
But if you do listen to it and you’re curious and you just kind of barely understood some of the concepts, what I would encourage you to do is get her book, absolutely get her book, go through the book lists, listen to it online, if you can read it, and understand her nine essentials to supporting somebody.
The Nine EssetialsBill Gasiamis 1:19:58
Make gains in recovery after a traumatic brain injury, or whether they’re born with a neurological condition because they are really counterintuitive and quite amazingly expressed in the book these nine steps, basically. So you know, before I wrap this episode up what they are is, is essential number one is to move with attension. And it doesn’t actually mean what the chapter heading says it’s far deeper and more nuanced than that.
Bill Gasiamis 1:20:39
Essential number two is to do things slowly to move slowly. And we briefly touched on that in the episode, essential three is variation, to give the body lots of different variation, lots of different ways to get to the same outcome or to the same intention. Essential number four is to use subtlety, something we didn’t really go into too much and discuss. Essential number eight is to a bigger part an essential number five is to enroll enthusiasm in the path to celebration of wins that somebody has no matter how big or small they are.
Bill Gasiamis 1:21:29
Essential six is flexible goals, which is a really important one, which we didn’t touch on, that you need to understand about having flexible goals so that the goal posts can be moved in your favor, if you don’t reach a particular outcome. Essential seven is the learning switch, which I haven’t read about yet. And I’m not sure what that refers to. But no doubt, it’s going to be another amazing chapter.
Bill Gasiamis 1:21:58
Essential eight is imagination and dreams. So how to activate your imagination. And I’m not sure exactly what dreams refers to, but it’d be really worth looking at. And essential nine is awareness. And I imagine that’s around about having awareness about what it is that you’re experiencing, and that you’re noticing.
Bill Gasiamis 1:22:25
And although the books written for parents, it kind of is something that you could look at and learn from, and apply to yourself in your own recovery. And potentially, you could make this book available to your caregivers, that they know what page you’re on, if they’re interested in, in understanding, a different way of looking at recovery.
Bill Gasiamis 1:22:53
And not only your caregivers, but also your physical therapists and occupational therapists, I know I’m going on about this book. And as soon as like, I have shares in it, I don’t, this is not a book that. That’s like all the other books. It’s a very, very different book. And, and that’s perspective is very different. So anyhow, if at all you got curious about it, you’ll be able to find the links to the book and to a net website via the show notes.
Bill Gasiamis 1:23:24
So please feel free to go to recoveryafterstroke.com/episodes so that you can see her episode, and then click on the link there and it’ll open up and it will give you all the details on the shownotes. So thank you so much for coming to the podcast and listening every week. I really appreciate it. Thanks for all the people who have left review, thanks to the people who get in touch and leave me amazing feedback.
Bill Gasiamis 1:23:54
And let me know how much of the podcast does for them. And I really appreciate the people who are sharing this podcast on social media and telling other people about it, because it’s really making it easier for other stroke survivors who are going through something similar to what we’ve all been through. It’s making it easier for them to find the podcast.
Bill Gasiamis 1:24:17
And that makes a huge difference when you’re in that early phase. And if you remember how good it was when you discovered the podcast, and makes a huge difference to to help how people can go about their recovery and not feel alone and hopefully it’ll lift their spirits and it’ll teach them something. If you’re a stroke survivor with a story to share about your experience, come join me on the show.
Bill Gasiamis 1:24:42
The Interviews are not scripted, you do not have to plan for them. All you have to do to qualify is best stroke survivor or care for a stroke survivor or be somebody who helps out stroke survivors. Whether you’re in the medical field or in an allied health environment, just go to recoveryafterstroke.com/contact fill out the contact form. And as soon as I receive it, I will respond with more details on how you can choose a time that works for you and me to meet over zoom. Thanks again for being here and listening. I truly appreciate you and see you on the next episode.
Intro 1:25:17
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals their opinions and treatment protocols discussed during any podcast or the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.
Intro 1:25:34
All content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis. The content is intended to complement your medical treatment and support healing.
Intro 1:25:51
It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.
Intro 1:26:12
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Intro 1:26:36
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The post Neuromovement – Anat Baniel appeared first on Recovery After Stroke.
On the road to recovery after an Ischemic stroke which was caused by a Patent Foramen Ovale (PFO) Yvette Adams shares her stroke experience and her recovery 8 months from the date she ended up in the hospital.
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Transcription will be available soon…The post Heading: PFO And Stroke Recovery – Yvette Adams appeared first on Recovery After Stroke.
Professor Stuart Allan is at the coalface of stroke recovery research and is leading a team of researchers working on the next generation of clot-busting medication.
Professor Stuart Allan’s Profile
Highlights:
01:32 Introduction: Professor Stuart Allan
12:19 Brain Cells Die After A Stroke
15:49 “The Clot Buster”
19:59 Bill’s Stroke Recovery
27:24 Minimally Invasive Surgery
34:57 General Anesthetic
38:19 Research Timeline
42:19 Animal Trials
51:48 Early Intervention
57:44 What Is Stroke Fatigue?
1:06:21 Brain Inflammation Research
Transcription:
Professor Stuart Allan 0:00
Those who have had an ischemic stroke will know that they’ve been given a drug called TPA tissue plasminogen activator. So this is a drug with a clot buster. So it’s the one treatment we’ve got for stroke which is given to people with ischemic stroke not hemorrhagic and it breaks down blood clots.
Professor Stuart Allan 0:13
And it’s very good, it can work very well, but it doesn’t always work in all people. It’s one reason we think it doesn’t always work is because of the obviously blood clots are made up of different things, different proteins and different cells come together to form a clot.
Professor Stuart Allan 0:27
So therefore, the composition of that clot what it’s made up of determine how it breaks up in reaction to a drug. And so it’s believed that TPA doesn’t break up some types of clot, for example, platelets, or blood borne cells that are particularly present in clots. So we’ve developed a drug a new drug here in Manchester, which is at it’s early stages which will basically break up clot the TPA doesn’t.
Intro 0:55
This is the recovery after stroke podcast. With Bill Gasiamis, helping you navigate recovery after stroke.
Bill Gasiamis 1:03
Hello, and welcome to episode 230 of the recovery after stroke podcast. If you’d like to support the show, the best way to do it is to leave a five-star review and a few words about what the show means to you on iTunes and Spotify. If you’re watching on YouTube, please comment below the video like this episode, and to get notifications of future episodes, subscribe to the show hit the notifications bell.
Bill Gasiamis 1:32
My guest today is Professor Stuart Allen, a professor of neuroscience in the Faculty of Life Sciences at the University of Manchester, United Kingdom, who is working with people from around the world to find new treatments to decrease the impact of ischemic and hemorrhagic stroke. And it is such an insightful episode because it provides hope for people for better outcomes after stroke all over the world. Professor Stuart Allan welcome to the podcast.
Professor Stuart Allan 2:04
Pleased to be here.
Bill Gasiamis 2:06
Thank you for being here. We got in touch because on Episode 187, I interviewed Fiona Moss, the sister of Natalie Kate Moss, who passed away due to brain hemorrhage. And in memory of Natalie, her family set up the Natalie Kate Moss trust. And they’re doing amazing work, raising money to fund some research programs.
Bill Gasiamis 2:36
I believe, at the University of Manchester in the in England. And a lot of times Stuart, what happens is we hear from all the people doing all the great work, raising money and funneling it down all the correct avenues to get it to people like you to do some research. But we very rarely hear from the research about the kind of research that we’re doing.
Bill Gasiamis 3:03
And I feel like we’re missing that opportunity to connect with the people who are at the coalface of discoveries and tried to come up with new ways to support stroke survivors and other people with neurological conditions. And that’s why I’m really pleased to have you here on the podcast. Before we get into the conversation. Tell me a little bit about you and your role at the University of Manchester.
Professor Stuart Allan 3:30
Yeah, absolutely happy to do so bill. So I’m Professor Allan, I work here at the University of Manchester, I’ve been here for 29 years, I came to Manchester after I’d completed my PhD in University Aberdeen in Scotland, and I moved to Manchester to continue or to really start researching a topic which at the time in the 90s was poorly understood, which is the contribution of inflammation in the brain to brain disease, particularly stroke.
Professor Stuart Allan 4:07
So a that was a John area started back in the 90s. And so over that time, I’ve obviously secured an academic position and now I lead a group. So I lead a group here in Manchester that has a real focus on understanding inflammation. What happens in the brain in stroke, why stroke occurs, and what the consequences of that stroke are to the brain itself and actually more widely, and actually what we are most importantly trying to do is try and find ways to reduce the impact of stroke.
Bill Gasiamis 4:46
I’m going to ask a question. I want to interrupt it and some of my questions are just me thinking out loud, and these are the things I’m curious about and maybe you can or can’t answer them because your work may not have led you down that path. What comes first inflammation or the stroke?
Professor Stuart Allan 5:03
Very good question. So we think another evidence suggests that actually inflammation probably is a potential contributor stroke happening. So if you look at the reasons, there are different reasons, people have a stroke, of course, and there’s different subjects that store, some are genetic. So there’s some rare causes that are genetic, and in the case of Natalie Kate Moss, you mentioned.
Professor Stuart Allan 5:29
She had a particular feature in her blood vessels in the brain that might well have been here since birth, that caused a rupture of the blood vessels. But many types of stroke are caused by risk factors. So for example, if somebody has a hypertension, so high blood pressure, if somebody has a atherosclerosis, where they’ve got buildup of fat in the vessels in the body, and these are all inflammatory, so these are inflammatory conditions, and actually, probably the best evidence that inflammation might cause stroke is infection.
Professor Stuart Allan 5:29
So if somebody has an infection, you’re about three times more likely to have a stroke. And actually COVID has confirmed that data. So if you look in COVID, there’s this increased risk of basically a clotting and clots forming and COVID. So we think inflammation may be partly contributing towards stroke, it’s not the total cause.
Professor Stuart Allan 6:26
But what’s not in question, I think, is that once you have a stroke, so once there’s a bleed, or a clot forms in the brain, and then there’s processes that take place in the brain and around the body that you would call inflammatory. And some of these are good, to be honest, inflammation is a good thing, and some of these are probably good responses, but some are bad responses.
Bill Gasiamis 6:49
Inflammation, which is good for example is when you cut your hand, it gets inflamed, and then it heals, and it hurts and it’s hot, and it’s all weird, but then it gets better, right. So that’s good inflammation, absolutely. Inflammation that happens in the brain, so inflammation before stroke might be happening in a different location, and then the brain gets impacted and then you have inflammation in a nother location where the infarct is or where the hemorrhage was.
Professor Stuart Allan 7:23
Spot on Bill the inflammation, pre stroke is probably peripheral, you know, in the body and could be in a blood vessel, and then the stroke happens in the brain. And then there’s local inflammation, we call it local so around, where the brain damage is, you get inflammation.
Professor Stuart Allan 7:39
But also more widely again, you know, the body, which sort of makes sense, if something happens in the brain, the body responds to that. So that so the immune, immune cells are produced in the bone marrow, and they will then travel to the brain, because they obviously think something’s gone wrong.
Professor Stuart Allan 7:54
And they will move to the brain to do something in the same way they would move to kill a bug, to kill an infection that you have. And we still don’t really know fully how the inflammation, what different, I suppose we could talk about benefits and downfalls of inflammation.
Bill Gasiamis 8:19
Yeah, so I feel like inflammation at the acute phase in the brain is really good. It’s kind of trying to support healing and recovery, similar to what’s happening in the finger. But then it seems to be that inflammation with regards to stroke, especially ischemic and hemorrhagic scenarios tends to long-term ongoing inflammation seems to be then negatively impacting the brain over and above what the stroke already did. What already the initial incident did.
Professor Stuart Allan 8:54
Yeah, that’s what we think. So you’ve got a great analogy, if you cut your finger, it’s a bit painful, it’s sore, it goes red. But then it’s okay. You know, within a day or two, it’s fine, it’s all healed. That doesn’t tend to happen in the brain. So you don’t get this resolution. So that’s called resolution of inflammation, it don’t doesn’t seem to be that same resolution.
Professor Stuart Allan 9:19
Or the response is prolonged. So it’s prolonged and it causes a continued problems, basically. And I think most importantly, it doesn’t allow recovery. And you know, why the brain tissue doesn’t recover in the way that peripheral tissue does is obviously, some evolutionary reason you know, the brain is sort of protected from the rest of the body. So it might just be this fundamental differences.
Bill Gasiamis 9:47
Yeah. When I was experiencing the first first hemorrhage as a result of a faulty blood vessel an arteriovenous malformation that burst in 2012. One of the first things they did is they prescribed me with dexamethasone, a seriously serious steroid medication that has 60 side effects, and I experienced probably 20 of them. However, what it was designed to do was decrease the inflammation in the brain that was occurring as a result of the blood that had leaked from the blood vessel into the brain.
Bill Gasiamis 10:29
So before I knew anything else about anything, I knew that they were actually trying to decrease the inflammation in my brain. And it made complete sense to me. But that’s kind of all I got from it. Like, that’s as much as I understood about it. And of course, I didn’t know that other people were working in the background, you know, in the universities of the world to find ways to support stroke survivors.
Bill Gasiamis 10:58
So once I discovered the Florey Institute, in in Melbourne, in Victoria here, I got really excited that there was a whole bunch of people working to support us overcome these issues and find new ways to do that. Tell me about some of the research that you’re currently involved in, and what it’s aiming to do, and how far down the rabbit hole you guys have gone?
Professor Stuart Allan 11:25
Yeah, absolutely. So what I talk about now, very much soon, and you’ll be able to I’m sure relate to this as other stroke survivors will, is about that patient journey, because people, you know, obviously stroke happens in an instant. So it’s an instant event that happens to somebody whether it be in your case on an AVM the ruptured or a clot. And so the journey begins before stroke obviously, if you’ve got a risk, if you’ve got an AVM, that’s identified on a scan.
Professor Stuart Allan 11:57
Somebody, a neurosurgeon do something to try and remove that AVM to prevent the blood. So that’s prevention, and of course, prevention, in many ways, is what we really want to achieve. We personally our own research, we don’t do a lot on prevention. And that’s not because it’s not important. It’s just it’s a different ballpark.
Professor Stuart Allan 12:19
So where we are focused now is really, when immediately after the stroke happens, so whether you get bleeding in the brain or you have a clot, we’ve spent many years trying to understand what’s happening in that first few hours after the stroke happens, because we know that basically brain cells die.
Professor Stuart Allan 12:39
So the consequence of stroke, whether it be hemorrhagic or ischemic stroke, which is a clot is a brain cells die. Unlike many people around the world, we were trying to understand why the cells die. And most importantly, can we stop the cells dying, but at least reduce the number of brain cells that die because the problem is if brain cells die, then you’ll lose function of that part of the brain.
Professor Stuart Allan 13:02
And that work has been successful in that we, you know, we’ve identified, and we use different approaches, you know, we use cell culture where we culture cells, in a dish, we can expose them to different things that might be floating about in the brain after stroke to damage cells.
Professor Stuart Allan 13:20
We also use a mouse and rat models where we can mimic what happens in a stroke. And we’ve identified as I mentioned, that inflammation is important. So we’ve got two approaches to that. One is to give an anti-inflammatory drug exactly you mentioned not dexamethasone, because dexamethasone, as you rightly say, has multiple different effects.
Professor Stuart Allan 13:41
And actually was not successful in trials when you looked at dexamethasone. And that’s largely because it’s a steroid that has multiple other actions. We’ve identified an anti-inflammatory drug, which only works much more focused than dexamethasone and it acts to block or stop the actions of a protein in the body that’s produced after stroke called interleukin 1.
Professor Stuart Allan 14:08
So interleukin one is a cytokine, it’s a protein that’s produced by immune cells to fight infection. It’s also a protein that’s produced in the brain when you have a fever, anyone who’s had a high temperature will be experiencing the effects of this protein in the brain because it causes your temperature to rise.
Professor Stuart Allan 14:29
So we’ve got a drug, we know that there’s a drug that’s licensed for use in patients for inflammatory disease that we’ve tried in animals that we show it works in terms of reduced brain damage, it makes animals better. And that’s been tested in patients. So it’s been tested in hemorrhage patients and patients with a clot and it basically in terms of it reduced inflammation, so that’s good because it tells you the drug is doing what it’s meant to do.
Professor Stuart Allan 15:02
Of course, the important thing that people want to know is does it improve outcome i.e stroke patients better. And that’s been tested now. So the drug is in what we call phase 3 trial. So it’s been tested in hundreds of patients with hemorrhage with subarachnoid hemorrhage, which is a bleed around the brain. So we’ll know in about two years or 18 months time that tail will finish.
Professor Stuart Allan 15:27
And if people are better, so three months after the stroke, I think or six months outcome, if people are deemed to be better, who’ve taken the drug versus the placebo, then that drug will have proven to be beneficial. But of course, we don’t know. That work’s been done in Manchester.
Professor Stuart Allan 15:49
The other work we’re doing is much more focused around those who have an ischemic stroke many of them will know that they’ve given a drug called TPA, a tissue plasminogen activator. So this is a drug with a clot buster. So it’s the one treatment we’ve got for stroke, which is given to people with ischemic stroke not hemorrhagic and it breaks down blood clots.
Professor Stuart Allan 16:15
And it’s very good. It can work very well, but it doesn’t always work in old people. And there’s some reasons why that is one reason we think it doesn’t always work is because obviously blood clots are made up of different things, different proteins and different cells come together to form a clot. So therefore, the composition of the clot, what it’s made up of will determine how it breaks up in reaction to a drug.
Professor Stuart Allan 16:42
And so it’s believed that TPA doesn’t break up some types of clot. For example, platelets are blood borne cells that are particularly present in clots. So we’ve developed a drug, a new drug here in Manchester, which is this is early stages, we’ve developed a new drug which will basically break up clots, that TPA doesn’t.
Professor Stuart Allan 17:06
So we think it might have benefits, improved efficacy, as we refer to it, compared to TPA. So this is the early days, this has been tested in animals, we the drug has been patented now. Which is important, because obviously you can then try and develop it and get the funding to develop it further. So that’s one other bit of work, which is quite exciting. And then related to that is work on hemorrhage.
Professor Stuart Allan 17:34
So hemorrhage is devastating, you know, the statistics for hemorrhage are quite startling, actually. So the number of people who die from hemorrhage has not really changed in about 30 years, or 40 years, which is really quite disturbing, actually.
Professor Stuart Allan 17:53
If you consider the improvements in medicine across most areas, and yet, in this particular type of stroke, there’s no improvement in mortality for many decades, it’s a very high mortality, about 40% of people will die within one month. And that’s a few reasons why, you know, it’s obviously you get bleeding in the brain, it causes quite a lot of damage, it causes increases in pressure.
Professor Stuart Allan 18:18
And there’s no treatment, there’s really no treatment. So we’re really trying now. And actually the Natalie Kate Moss trust really got us started on working on hemorrhage, we didn’t do much work on hemorrhage before, but they really opened our eyes to the fact that hemorrhage was under researched, and there was a real desperate need for treatment.
Professor Stuart Allan 18:36
So we’re doing a lot of work now in the group trying to find ways to help the outcome in hemorrhage. And that can be given in what’s definitely known now is that obviously, when you have a hemorrhage, the big difference between hemorrhage and ischemic stroke is you get bleeding in the brain, so the blood leaks into the brain.
Professor Stuart Allan 18:57
Blood is not a good thing to have in your brain, okay, the brain, it breaks down. So the blood cells break down and release iron, for example, that’s toxic, that kills neurons, and it causes damage. So one of the strategies that people think may be important to do is to basically remove that blood as quickly as possible.
Professor Stuart Allan 19:20
And that’s been done in surgery, so surgeons can go in and take the blood out. That’s not that has yet been shown to be successful. But there might be other ways to do that. And we think, you know, some of my colleagues are working on research where they think they can, for example, change or make the immune cells in the body or the brain it basically eat up the blood, basically swallow up the blood and remove it. And that happens already that happens anyway. But if we can speed that process up, then it might remove the blood quicker and make the outcome better.
Bill Gasiamis 19:59
That happen to me, the first bleed was quite small, about the size of my thumbnail. And the second bleed was about the size of a golf ball. And it started to decrease in size, but it took around about I want to say about 18 months before it got to a point where it was starting to get out of the way and allowing the radiographers to take MRIs and actually see beyond the bleed, beyond the clot.
Bill Gasiamis 20:39
And as it started to decrease in size, more and more of my function came on, and came back on and came upon, I started to feel a lot better. But for a good eight or nine months, I was really on another planet, my brain had completely turned off. And I wasn’t operating the same way that I was before that second bleed. At one point, I didn’t know my wife’s name, I couldn’t remember who came to visit me. There was so I couldn’t drive, I couldn’t work, there were so many I had fatigue,
Bill Gasiamis 21:16
I’d start a sentence and not be able to finish it. All sorts of issues along that and they kind of started to subside, each one of those issues subsided as the blood clot got smaller. And we’re able to track the size of it by doing multiple scans once a month, to see how much it was decreasing and whether it was still bleeding and getting bigger.
Bill Gasiamis 21:37
But the third bleed that happened, which was in November 2014. So almost two and a half years after the original bleed, that bleed ended up me requiring brain surgery. And that was when my surgeon, my neurosurgeon said, look, we’ve got to go in now because this thing is continuing to bleed, it’s going to be risky, it may cause you more harm.
Bill Gasiamis 22:06
And it might put you in a situation where you’re driving, and it’s dangerous, and you kill yourself or somebody else and all that stuff. And I was very motivated by now nearly three years in to just have this resolved. And the challenge is that after the brain surgery, that’s when I woke up with deficits that have not gone away.
Intro 22:25
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse? Doctors will explain things that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 22:50
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called seven questions to ask your doctor about your stroke.
Intro 23:09
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery, head to the website. Now, recoveryafterstroke.com and download the guide. It’s free.
Bill Gasiamis 23:25
So I had brain surgery in 2014. And now I live with left side numbness constantly tired and some spasticity that’s not visible, in my function, but muscle tightness and all that type of thing, temperature difference on my left side compared to my right side, hypersensitivity on my left side compared to my right side, my left side gets more tired, much more quicker than my right side and when I have a drink, which is very rare, but if I have one drink, my left side pretty much is already drunk and gone. My right side still wants to have a party.
Bill Gasiamis 24:07
So what you’re saying about the surgery option, it seems to be a good resolution and a full stop to this faulty blood vessel that wants to continue to bleed. But it was the thing that made me unwell more unwell than all the bleeds even though the second bleed was very serious. If it got out of hand it would have been far worse.
Bill Gasiamis 24:35
But I get excited when I hear about things like research into hemorrhagic strokes now. Again, prevention doesn’t seem to be on the radar of too many people. I know in Australia, the National Stroke Foundation does preventative work. So as a stroke safe ambassador that I am, I’ll go around and talk to people about how to prevent stroke, whether it’s usually around they’re talking about ischemic stroke, but there’s a lot of talk around about going and getting your head scanned, for example, so that you can see whether there’s an AVM in there.
Bill Gasiamis 25:21
And then even if you do find an AVM or a cavernous angioma, and there’s like, what do I do with it? You know, do I go in and take it out? When it hasn’t done anything to me for all these decades? Or do I go in and risk brain surgery and get it removed? There the challenge challenges that I find that’s one of the things that it’d be really difficult for me to get behind. I kind of want people to be aware as to whether or not they’ve got a AVM or cavernous angioma in their head.
Bill Gasiamis 25:53
But then, I don’t want to be the person who says yeah, go have brain surgery, because I don’t know what that’s going to end up doing to you. So it’s a very interesting situation. But to find out that perhaps we can remove clots in the brain quicker somehow, that’s really exciting. And that would have been amazing for me, because that would have given me back nine months of being in la la land.
Professor Stuart Allan 26:33
Yeah, absolutely. And your point about, you know, everyone, because you could argue that everyone has a brain scan and you know, early on and identify an AVM but as you exactly say, the problem is there’s no treatment there. As such, you know, the quandary then is for the neurosurgeon, you know, and the patient is do you operate to remove, but potentially cause a bleed.
Professor Stuart Allan 26:56
So that is a quandary in terms of, you know, removing blood. So I think what’s exciting, I think is it’s definitely been recognized that doing surgery, major surgery, so major invasive surgery, where you might remove some of the bone, and I suspect this may have happened for you, we did it quite major surgery, that definitely doesn’t work. And that’s probably due to the complications and the impact of the surgery itself, because it’s not great, opening up the bone in the head.
Professor Stuart Allan 27:24
And if you’re gonna dig in and get the blood out, it’s causing damage anyway. But what the neurosurgeons are doing now is actually what they call minimally invasive surgery. So they’re basically trying to be, you know, as carefully as possible to disrupt, to cause as least disruption as possible to the normal tissue. So they’ll drill a very small hole, a very, very small hole and put a very, very fine needle into the bleed, and then try and remove it either by injecting TPA, which I talked about earlier on, which will break down the blood and suck it out basically.
Professor Stuart Allan 27:59
Or, and there’s a trial now in Holland just started actually, where they basically I think the device they put in this long needle has a little blade that cuts up the blood, and again, sucks it out, basically. So that definitely holds promise, I think that definitely holds promise.
Professor Stuart Allan 28:20
And for me most excitingly as a basic scientist, because one of the challenges in treating stroke is if you need to get the drug, to where the damage is on the brain. That’s not always easy, because obviously, the brain is protected. So, you know, the brain has what we call the blood brain barrier. The brain doesn’t let drugs to get in very easily in other substances.
Professor Stuart Allan 28:43
So that’s a challenge. And that’s one of the reasons why so many brain diseases are very hard to treat, because actually, it’s difficult to get drugs designed that will get into the brain. But actually, if a surgeon is going into the brain anyway, to remove a clot, then actually you can go you’ve got to route into the brain directly. So what I think most excitingly for me is that if they do the minimally invasive surgery removes the clot, which I think undoubtedly is a good thing.
Professor Stuart Allan 29:12
And at the same time, inject a drug directly into the tissue, then that will promote repair, then you’ve got a double win, basically. And I think that, to me, is the exciting thing, which could be the future treatment, you know, could be the way forward to try and impact hemorrhage. Of course, what we don’t know is what drug we put into the brain to repair a brain damage. I think that definitely has opportunity to do that.
Bill Gasiamis 29:44
Are you able to give some kind of a description or explanation about what the blood-brain barrier is? I’ve heard about it I understand what it does. Basically, from my understanding what it does, it stops toxic foreign substances from getting through the blood and into the brain. But is it a physical barrier? Is it inside the blood vessels? Like where is it?
Professor Stuart Allan 30:14
Yeah, so it’s so basically it’s the blood vessels themselves. So you know, blood vessels are made up of what we call endothelial cells. So the endothelial cells are the cells that make up your blood vessels throughout the whole body, along with other cells that form alongside them and muscle cells. But basically, the endothelial cells are the main cells. And then if you can imagine the cells joining end on end, so these cells link up end on end.
Professor Stuart Allan 30:41
And the big difference is, the key difference is, the cells and other organs in the body that join up but not that tightly. So the join between the two cells is actually quite loose. Which allows movement of substances in and out a bit easier. The brain cells have what we call tight junctions, so it’s simply their referred to as tight junction. So basically, the cell, the contact between two adjacent cells, is very tight.
Professor Stuart Allan 31:12
And that’s because it has special proteins and special complexes that formed between the two cells. And that’s what makes it tight, that’s what makes the brain barrier what it is. So it isn’t special, it’s just the endothelial cells are different. And they form this tight barrier. So nothing can move between the sails. So if you imagine trying to squeeze through a gap, you know, if you’ve got a door that’s slightly ajar, then you can get squeezed through that gap.
Professor Stuart Allan 31:43
If it gets a bit bigger, you can get more things through it. Basically brain barrier is a door that’s really tightly shot, and you can’t get very much through it. And what’s thought to happen is actually Bill one of the most exciting areas of research, I think that what now seems to be the case is that that barrier is not as good in age, certainly when you age, that barrier becomes less strong.
Professor Stuart Allan 32:13
And in many diseases, so it definitely breaks down. So when we say it breaks down, these junctions open up, or even you can believe it or not, you can move things across the cells themselves, basically, you get small, vesicles, or you get little cargos that can get carried across the cell.
Professor Stuart Allan 32:37
And that increases. And in stroke that definitely happens, in Alzheimer’s disease, there’s some evidence now that blood-brain barrier is disrupted as well. So it’s quite an exciting area of research. So it’s there, you know, the blood-brain barrier was designed to protect the brain, but it definitely breaks down in disease it might therefore be a contributor towards certain conditions and certain behaviors.
Bill Gasiamis 33:08
Are they measuring the blood brain barrier, do people physically able to move that?
Professor Stuart Allan 33:13
We can’t do that, and that’s, that’s why we’re beginning to understand more about this, you know, one of the challenges in medicine and science is obviously trying to understand what’s happening in a living organism, particularly in humans. The brain is obviously not easy to study, because it’s trapped in a in a in the skull. Imaging, you know, things like many people listening will have had a scan, a brain scan, and you mentioned brain scans.
Professor Stuart Allan 33:40
So if you have an MRI scan, for example. And these, these techniques, increasingly, scientists are improving and come up with new techniques to be able to visualize or see what’s happening in the brain. And one way to do that is to do you can image the blood-brain barrier so what you can do and it’s actually quite simple, when you think about the concept is to inject something into the blood that you can see using an MRI scanner
Professor Stuart Allan 34:10
Basically it will cause a change in the picture looks like on an MRI scanner. And if the blood-brain barrier is leaky, that substance will leak into the brain so you’ll be able to see a change in the brain in terms of leakage of substance and that’s what’s now being done.
Bill Gasiamis 34:31
Similar to an angiograph.
Professor Stuart Allan 34:33
Exactly so if you think of an angiogram you know obviously if there’s leakage of the contrast into the brain then that tells you your blood brain barrier is leaky so people are doing that a lot more to try and understand when there’s blood-brain barrier leakage and where about is that importantly, you know which part of the brain for example might be affected.
Bill Gasiamis 34:57
Wow, absolutely fascinating so I have a question that came up in my mind about general anesthetic. How does that put people to sleep? Does that impact the brain? Does it go through the blood brain barrier? I know that again, it might not be an area that you’ve studied or researched any idea simply how anesthetic works? Does it go through a different mechanism to actually put people into a state of sleep?
Professor Stuart Allan 35:33
Anesthetics, you know, whatever your local anesthetic or general anesthetics basically or drug what it does is that it binds you so the brain, the whole body is controlled by neurotransmitters. So everything we do is controlled by these proteins, these substances, chemicals that move around the body, and these chemicals must have an act and these chemicals need to interact or bind to a protein on the surface of a cell.
Professor Stuart Allan 36:03
So they’ll bind to a protein on the surface of a cell. And then they’ll cause some effect. So for example, when we can be able to speak and produce sounds or to hear is all caused by transmitters and causing changes. So anesthetics basically, block they block signaling in the important parts.
Professor Stuart Allan 36:29
A local anesthetic, we’ll do that locally. So it’ll stop the movement. And what happens is when a neurotransmitter binds to its receptor, or it’s putting on cell surface, what typically happens is it causes a change in the membrane of the cell and allows ions to flow in and out. So that will change the cell property, the cell will then change and that will cause a change something that doesn’t seem to happen.
Professor Stuart Allan 36:58
Anesthetic stop that happening. They block it, they stop it happening, basically. So local anesthetic will do it in a local a localized way. And a general anesthetic will act in such a way to put you to sleep. And similar to an epidural, if you think if an epidural is where people get, obviously block, a awful lot typically is used obviously in pregnancy, or for lower body surgery.
Professor Stuart Allan 37:27
And that’s because you can inject basically the the anesthetic directly into somebody’s spinal cord, and it acts to stop signals, it binds to these receptors and stop signals traveling. It stops a pain basically any pain signals coming up to the brain.
Bill Gasiamis 37:46
Right? Okay, it’s it’s a completely different mechanism, it doesn’t require access via the blood brain barrier, it is a very different thing. All right, that answers that. So your research into this, “new version” or new different type of TPA drug? Is work being done in just Manchester University with that stuff? Or is there work being done in multiple places around the world?
Bill Gasiamis 38:19
And when you get to the end of your studies of your research of your current program, which is about 18 months away, you mentioned how quickly does that knowledge, that understanding, that new data, enable the next phase to occur? How long does it take to get to be used and adopted by hospitals and doctors around the world?
Professor Stuart Allan 38:48
My honest answer Bill is too long. So you know, one of the challenges in research is actually moving things more quickly along the pipeline, as we call it, we call it a translational pipeline. So basically, from the first discovery, to take it into, you know, early studies, and patients, and then trial, in that, and there’ll be no surprise for people to hear that that depends on several things, not least funding, because you’ve got to fund you have to do more research and to do more work needs money.
Professor Stuart Allan 39:19
The bottom line is you need money to pay the salaries of the scientists that do the work etc, to buy the drug or to do whatever you need to do. In that process. That process to secure money takes time. It takes a lot of time, because there’s not enough money. Basically, there’s not enough money out there to fund all the research that people want to do. So the process of getting money itself takes time.
Professor Stuart Allan 39:44
So you have to write an application to apply for money that can take sometimes a year, it can take a year to apply and get a decision on whether that project will be funded. So that’s a delay and then obviously then you’ve got to do the work. And you’ve got to then convince people that it’s, you know, it’s real, that you’ve actually got good evidence that this is a new drug, for example.
Professor Stuart Allan 40:09
And then you’ve got to take it along the pipeline of testing if it’s a brand new drug, it needs to go through very complex safety tests to show it’s not going to cause harm. And you mentioned dexamethasone, and some of the side effects, so you’ve got to be sure your drug is not going to cause harm, that counteracts any benefit, basically. So it takes a long time it can take many years, decades, to get a drug.
Professor Stuart Allan 40:38
But I think my hope is, the drug I talked about, they’re the one that’s a new clot buster could be quicker, because we think it’s another form of this drug has been tested in humans before so that suggests it’s safe to use. So it could be quicker, but it does depend on further research, of course, we need to prove we need to do more experiments to prove it works and it’s better than TPA.
Professor Stuart Allan 41:12
So it’s hard to predict it really is dependent on a bit of luck in terms of things happening, funding, and having the right people to do research. And that’s where the fantastic support the Natalie Kate Moss trust who kindly you know, have gone on as a legacy to Natalie, they’ve gone on to raise money to fund our hemorrhage research.
Professor Stuart Allan 41:36
And that’s been a really fantastic bonus to us. And it’s been really driven our research much faster, because they’re raising money for us basically to do research directly. So it cuts out the bit in the middle where you’ve got to write applications and wait for a year to get decisions. And you’re competing against all sorts of other applications to get funding.
Bill Gasiamis 42:01
It seems like a blinding flash of the obvious now when you say it when we can’t penetrate the blood brain barrier, but then we’ve got somebody’s head open. So while we’ve got it open, why don’t we access the area that we need to why don’t we put this particular drug in there?
Bill Gasiamis 42:19
And kill two birds with one stone so to speak. Well hopefully kill no one but, is that a gutsy move? Is that something that takes a long time for somebody to say, hey, why don’t we just put it in the hole you’ve already created? And see what happens? How they get to the point where they do that? Or has there been research on rodent populations, and then as a result, they get to this idea?
Professor Stuart Allan 42:49
The interesting thing is there’s been a lot of research in rodent models of stroke, where where drugs have been given directly to the brain, because obviously, you know you can do that or use more easily. But you can do it more easily in a rodent in a rat or a mouse than a human because, of course, you know, you’ve got to think about the cost benefit in a human and we’ve talked about that aspect in neurosurgery.
Professor Stuart Allan 43:16
And actually, we know these works and actually one of the problems people think because a lot of drugs have been shown to work in terms of stroke in animals, but they don’t work in humans. And the question is why? The reality is in the positions particularly the case maybe 20 years ago in the 90s is that the drugs often were tested in animals by giving it directly into the brain.
Professor Stuart Allan 43:39
And then they went into the trial where the drug was given into the blood in the patient and so of course there was no evidence to say that that drug in the blood then got into the brain. So the concept if you give it directly into the brain is going to have benefit is definitely true. So the question just is in humans how do you get that and how do you get drugs into the brain?
Professor Stuart Allan 44:03
And one way is through surgery that’s happening anyway. And people have thought about this obviously before not just me. And also there’s a lot of effort being done by research groups around the world to try and find clever ways to get things to try and move things better into the brain.
Professor Stuart Allan 44:26
And we’ve got some research we’re doing that same thing so you know, we’ve got some research, so liposomes are basically small packets, they’re basically carriers of drug and one of the Coronavirus COVID 19 vaccines uses the liposome to deliver it.
Professor Stuart Allan 44:46
So it basically is a little package that you can put drugs inside it or move around the body. And these are using cancer and actually we’ve got some evidence now that in stroke these liposomes get into the brain better they seem to access the brain after somebody has a stroke selectively.
Professor Stuart Allan 45:07
So that gives us the opportunity, we think to give to either attach a drug to the surface of that liposome or to put it inside so a little bag that carries the drug to the brain. So there’s lots of work to get done to try and do that.
Bill Gasiamis 45:29
That’s fascinating. So in the in the situation with the inflammatory response, right, so interleukin 1, there seems to be a benefit of interleukin 1. Is it beneficial? There seems to be a benefit to having the response where interleukin 1 is released into the area that’s been injured right?
Bill Gasiamis 45:58
And is it possible that when delivering this new drug to decrease the amount of interleukin 1 that you’re causing harm elsewhere? Is it possible that it’s doing too much of the reversal of interleukin 1 and therefore interfering with some other part of the healing response? Or the recovery response?
Professor Stuart Allan 46:27
That’s a really good question. Because obviously, interleukin 1 is what we call one of the main inflammatory cytokines. So it’s used to fight infection, for example, it definitely is. So one of the one of the questions we always get asked is if you stop this, if you give the drug interleukin 1 receptor antagonist, to stop a one action and do you cause more infections?
Professor Stuart Allan 46:49
Because you know, as a foreign example, there’s many trials being done in terms of use in COVID, it’s been used COVID and shown to be effective and COVID. The trial has been done, show that there’s a very slight, a very slight increased risk of infection, but it’s very low. And these are not common infections.
Professor Stuart Allan 47:13
And we’ve done some research here, Manchester, where we think that’s because actually, although interleukin 1 is important in infection, there are other mechanisms, the body has other ways to fight infection they don’t only need interleukin 1, so therefore, by blocking it to prevent damage, you’re not causing an increase in infection.
Professor Stuart Allan 47:36
Of course, you know, what we don’t know is, and this is, again, research we need to do is how long do you stop it working for? And that’s a question which is true of any pathway because inflammation, certainly what we know is in the stroke to brain if somebody has a stroke, because there’s definitely ongoing inflammation in the broadest sense, you know, there are what we would call inflammatory processes happening over many weeks and months, if not years.
Professor Stuart Allan 48:07
In somebody’s brain. And of course, the key question is, are these inflammatory processes actually trying to do some good? Are they trying to, you know, help the brain to repair to allow new connections to form to make the blood-brain body or better, and until you do the test of course, you don’t know that. So that that’s important.
Professor Stuart Allan 48:33
So the time you treat for is important. And that’s why we need more research to try and understand that situation. Of course, the advantage, we think of giving a an inhibitor. So at the moment, all we propose is if you stop interleukin 1 acting very early on in the first day, then that should be at least enough to cause a reduction in damage. So the question is you were only giving the drug for a short period of time.
Professor Stuart Allan 48:55
In the acute very acute phase.
Professor Stuart Allan 49:08
In the acute phase, and that has advantages in the prevents, it stops any potential side effects. It’s actually relatively cheap. So in terms of the health economics, because of course, any treatment that’s given to patients needs to be paid for and one of the challenges in health services across the world health providers is the cost of drugs can be very expensive.
Professor Stuart Allan 49:32
So actually, if you’re giving a drug only once or twice and it’s not an expensive drug, then of course that’s from a health economics point of view. That’s, good because it’s doable. But we are interested in ongoing inflammation in the brain. We’re also very interested in whether some of the things that happen early after stroke.
Professor Stuart Allan 49:58
So one of the things we definitely know what happens is when you have a stroke in the brain, the immune cells in the blood change, you know, so if you can imagine the immune system can tell there’s been a damage to the brain, and the immune cells become different they change the properties. We don’t really know why they change their properties. And what that means longer term.
Professor Stuart Allan 50:23
And we have funding now across several centers in Europe and North America, to try and understand that more, particularly in relation to and you talk to yourself, Bill about some of the problems you had thinking and just doing things that you normally did before your stroke, that you weren’t as good as doing it as you previously were.
Professor Stuart Allan 50:44
And that’s basically called, that’s what we call cognitive decline. You’re there’s there’s a cognitive change that people’s ability to process to do things, whether it be speaking, whether it be reacting to something, whether it be remembering becomes changed, only 30% of people who have a stroke will get cognitive decline. Some will get dementia, about 30% get dementia, and we don’t understand, we don’t know why to be honest, we really don’t know why.
Professor Stuart Allan 51:14
But we think, one hypothesis is that actually, some of these changes that happen very early to immune cells have a longer term consequence on the brain to cause changes in brain function. And the exciting thing is, of course, if you prove that, or you can demonstrate that’s true, then you can very early after the stroke you can intervene, and try and reverse these changes to then prevent the consequences of stroke happening.
Bill Gasiamis 51:48
I like that idea of early on having the intervention so that you can decrease the damage early on, because it’s early on, when all the damage happens really the first few hours of stroke. And as it remained untreated it’s getting worse and worse but that initial phase that sounds extremely promising, because then we are saving physically the brain in different parts, and we’re restoring function sooner, and that person’s getting back to health quicker back to society quicker back to work quicker back to the family, everything is impacted in a positive way, if we can intervene at the very early phase.
Professor Stuart Allan 52:35
We know I think this is a beautiful thing. Although stroke it does have devastating consequences on people. But the good news is there’s been real success in the last 20 years, you know, TPA does work, I think, you know, although we’re trying to find out a better drug that might help more people TPA does work.
Professor Stuart Allan 52:55
So TPA has really transformed outcomes in ischemic stroke. And people may be aware over the last three or four years, one of the biggest one of the biggest interventions that works is actually physically pulling clots out. So what’s happening now in many stroke centers across the world is they actually clots that are quite big, and maybe don’t get broken down by TPA, they can pull them out, they can actually physically retrieve them. A and that is whether that works, it’s highly successful, highly successful outcomes are incredible, you know, somebody can go from being really completely, you know, major defects to basically walk out the hospital.
Bill Gasiamis 53:39
Here with some certain I’ve interviewed stroke survivors who have had TPA and had interventions like that. And they they tell you, they’ve had a stroke, and it doesn’t look are you know, I’m going to use really terrible words, because I don’t like that. The thing I’m about to say, they don’t look like they’ve had a strike that an act like they’ve had a stroke they don’t tell you that I have deficits, like someone who’s had a stroke, like there’s nothing about them that suggests stroke yet.
Bill Gasiamis 54:06
They have actually had a stroke and some of the things that they’re left with some of those people might have some fatigue, or a little bit of, you know, memory issues or something minor that you would say, you know what, that is a great outcome for you, for any person who has an outcome like that, because we know what stroke can do. Everything goes right for that person, you know, they notice some symptoms, they get help they get seen immediately they get given the correct intervention immediately.
Bill Gasiamis 54:36
And you know, within a couple of hours, they are back to a level of health that they were very close to before the stroke instead of having nine months of rehabilitation, a lifetime of walking with left side or right side deficits and so on. So I love the idea that this is real the exciting to interview somebody who’s in your role, who does the kind of work that you do, because that’s the kind of hope that we stroke survivors are a waiting for.
Bill Gasiamis 55:11
We’re waiting for something to turn up. Because we know how devastating it is we actually a lot of the people who come on this podcast do to raise awareness. So that somehow, what’s happened to us, something good comes out of it, we can potentially help other people have had a stroke, recover quicker, have less impact from it, and so on.
Bill Gasiamis 55:37
So even though some of these drugs might not be beneficial to me, I love the idea of the fact that they’re going to be beneficial to other people, because we know that I think the World Trade Organization now has revised the number of people that will have a stroke in their lifetime to one in four from one in six.
Bill Gasiamis 55:59
It’s way too many people that are due to have a stroke in the future, it’s just something that I can’t even I don’t even want to think about. So knowing that, that there’s going to be more that we can do for those people, and hopefully, decrease the amount of negative impact. That’s really, really amazing, that’s really exciting and promising.
Professor Stuart Allan 56:25
I think it’s fantastic that people like yourself Bill, another stroke survivor, you do so much to raise awareness, because, you know, many of the things we talk about and are being researched, or, you know, it’s terrible to say are too late for people who have had a stroke, because many of these things are about early treatment. But, and I think that’s why we need to research to do that we still need research that’s going to bring better treatments.
Professor Stuart Allan 56:52
But we also need to do more research on trying to improve those things that are affecting people’s lives, quality of life. And you mentioned yourself. And actually you mentioned you know, what’s becoming pretty evident now, actually is more people survive, you know, survival rates now are much better for ischemic stroke. So though the major a changes that people will typically relate to so movement problems or speech problems, they’re being lessened because of the treatment.
Professor Stuart Allan 57:26
Actually, things like fatigue, and memory problems aren’t. So that in some ways, as scientists, we need to understand we need to turn this on why that is, you know, why is? Okay, so you’re getting blood back into the brain quicker, which is basically what TPA does and thrombectomy. So you’re getting a blood back into the brain.
Professor Stuart Allan 57:44
And that’s obviously helping to measure physical deficits. But actually, some of these more subtle, but yet really, really, you know, have major impact on somebody’s quality of life are happening. So the question for scientists is why that is, and fatigue is really one of these ones that stroke survivors often report is being one of the most debilitating things that happen, and we really have no understanding as to what fatigue is in terms of the brain function.
Bill Gasiamis 58:15
Yeah, I’m not sure if I’d be able to have a conversation with you about what fatigue is. And I love the nuance in that question, what is fatigue, but there seems to be a lot of work also being done by researchers around the world about the fact that fatigue might be linked to, a gut issue. So there’s an article that I’m reading right now it’s available on neuroscience news and research, I think, the website is technologyworks.com.
Bill Gasiamis 58:56
Anyway, there’s a group of American researchers who are looking at the possibility that stroke impacts the gut in a negative way. And restoring gut health could help save brain function. Or it could help minimize the amount of fatigue for example that somebody might experience now in my own personal experience, one of the things that I needed to do as soon as I realized that doctors were trying to decrease inflammation in my brain and they were doing it with dexamethasone, which was horrible.
Bill Gasiamis 59:33
I was on dexamethasone for about three weeks, and then had to be weaned off it. When I realized how horrible it wasn’t that I put eight kilos on in about two and a half weeks, that I wasn’t sleeping that I was having hallucinations, that my skin was crawling. I was eating about 4000 calories a day double what I would normally eat because it just made me ridiculously hungry.
Bill Gasiamis 1:00:02
I think it was dropped by my blood sugar did all these things. And when I realized that I wanted to not be on dexamethasone anymore, although I didn’t stop taking it, I did whatever doctors told me to do. I thought I’d look into ways that I think I did a Google search that was something like how to decrease inflammation in the brain. And one of the first things that came up was an anti inflammatory diet.
Bill Gasiamis 1:00:30
And what I thought was that the anti inflammatory diet was impacting my head. But what I know now, from, you know, what we spoke about with regards to the blood-brain barrier, the anti inflammatory diet wasn’t specifically doing anything to the head, what it was doing was decreasing inflammation in the gut. And as a result of that, I was having positive experiences on the neurological front.
Bill Gasiamis 1:00:55
And of course, I’m early on in this whole process, I don’t know what it means. I just know that when I’m not eating sugar, and when I’m not eating certain carbohydrates, like glutinous bread, like white rice, like, we call them soft drinks, you guys might call them sodas, when I wasn’t consuming food like that I was having the less fatigue episodes. And the more and more I got that out of my diet.
Bill Gasiamis 1:01:26
And the less I was spiking my insulin, the less I was having fatigue episodes, or they were less dramatic in the way that they impacted me in a negative way. So there is some weird well, it’s not weird. I mean, everything in our body is connected right, in some way, shape, or form. So there’s some amazing connection between how we can treat the gut, how we look after our gut.
Bill Gasiamis 1:01:58
And how that impacts our experience after a stroke, a neurological experience. And that is one of the only things that I found comfort from initially was because how do I take control of my situation a little bit? How do I control one part of this crazy thing that’s happened to me, the only thing I can do is control what I want to consume. And of course, the more I look into it, you know, there’s books by Dr. David Perlmutter who’s a neurologist.
Bill Gasiamis 1:02:31
There’s a whole bunch of other amazing people there’s this Grain Brain by another guy, like there’s this, there’s all these books, who that talk about how we can positively impact the the brain. But even though I know that it still doesn’t make sense to me after what we’ve just discussed, after the fact that nothing penetrates the blood brain barrier.
Professor Stuart Allan 1:03:06
I’m glad you’ve made this Bill, because I don’t want the listeners to get the wrong idea. So the blood brain barrier is a barrier, but it’s not a complete barrier. So things do get in. So things that the brain needs get in. So for example, you have to get glucose into the brain to get energy, and you’ve got to have oxygen to get into the brain, obviously, through red blood cells, and you need other nutrients.
Professor Stuart Allan 1:03:31
So you need other busy needs other nutrients to get into the brain to help the brain cells to work. So sorry, I made it sound like it’s a complete barrier. There are special mechanisms by which things get into the brain. So for example, any substance that is lipid soluble, so innocent it can be go into lipids into fat will get across the brain, into the brain very easily.
Professor Stuart Allan 1:03:57
And of course, it’s no surprise therefore, that certain dietary products, certain dietary things are absolutely essential to get into the brain to make the neurotransmitters I’ve talked about. So actually, the blood-brain barrier keeps out toxins and bad things. But it definitely lets in good things. And, I think the point you actually have nailed on the head, you know, the gut brain that acts is fascinating, because definitely got reacts to damage in the brain.
Professor Stuart Allan 1:04:26
And the gut barrier will break down, you know, obviously basically any lining of the body that is exposed to the outside world is a barrier because of course you need to keep things out. And what we know is the gut has, obviously a very important barrier. If that barrier breaks down, then it will change what gets into the body. So bugs will get into for example, you’ll get microbes come in, but also the ability to extract nutrients from foods becomes changed.
Professor Stuart Allan 1:04:56
So the blood-brain barrier is definitely basically a key gateway. So it is a gateway, it’s not a complete blocked off seal. And I think the argument you make is right, and there’s good evidence actually if you eat a diet that’s high, for example, in certain fatty acids, so they will get into the brain and they then help the brain probably to repair, you know, because you need, for example, if you, you know, the brain, most brain cells have myelin wrapped around the brain’s axons to make them work better.
Professor Stuart Allan 1:05:35
So, if you need to repair myelin, you need to get things into the brain to help to do that and make the cells work. So the key thing, I think, and think of it more simply is the blood-brain barrier, we need to promote the entry of things that are going to benefit brain function and keep out bad things.
Bill Gasiamis 1:05:56
Yeah, lovely. I love it. It makes sense. It’s a great conversation. It’s one that fascinates me. And that’s why I love having people like you on the program, a neuroscientist, who knows this stuff inside and out. It’s just one of my favorite topics, it’s just become one of my favorite topics. And you can understand why.
Bill Gasiamis 1:06:21
But as we come to the end of the episode, I know you’re a busy person, you’ve got a lot of things to do. And I want you to get back to your research. I am wondering if you can talk at all about the work that you might be doing or that you are going to be doing with the Melbourne University. So I’m very pleased to hear that you guys have some kind of a relationship, all the way from Manchester University, to Melbourne University. Can you tell me a little bit about that work?
Professor Stuart Allan 1:06:53
Yeah, absolutely. And it’s, you know, it’s quite exciting work. So it relates to inflammation. Again, you know, we’ve got a long interest in inflammation. And I mentioned before that one of the challenges in brain research is getting a window into the brain.
Professor Stuart Allan 1:07:06
So how can we tell what’s going on over time in the brain, in terms of different processes that might be good or bad after stroke. So what’s fascinating is if you look at the eye, okay, if you look in the eye, the eye is basically part of the central nervous system in terms of development. It’s part of the central nervous system, the retina, in the cornea.
Professor Stuart Allan 1:07:32
So with researchers in Melbourne, so some researchers in Melbourne, a Holly Chinnery and Laura Downey they work in the eye, they they’re their researchers who study the eye in terms of a disease. But actually, what they’ve also noticed is that if you, you can use the eye, and it’s a bit of a corny cliche, is a window to the brain. And they’ve got some evidence now that actually things that are happening in the eye, whether that be in the retina, or whether it be in the cornea, actually might reflect what’s happening in the brain.
Professor Stuart Allan 1:08:08
So you can use it as if you’d like as a measure of brain inflammation. And particularly they see some certain types of immune cell change in the eye and have shown that this is relevant to some Parkinson’s disease they’ve shown in people who get some cognitive impairment, there’s changes in the eye.
Professor Stuart Allan 1:08:30
So we basically are going to combine with a team in Melbourne to study and compare changes that are happening in the eye to changes are happening in the whole body, the changes are happening in the brain in terms of inflammation, and try and understand more about these responses across the whole organism over time.
Professor Stuart Allan 1:08:52
And it comes back to that time thing, that sort of temporal window of a stroke as an immediate event. And then there’s consequences that will go on for years, actually. And so that’s it. So it’s exciting. It’s very exciting research for us to use expertise in Melbourne to link it with our expertise in stroke.
Bill Gasiamis 1:09:13
It’s totally amazing. I’m blown away. I could go on and on but I won’t. Thank you so much for doing the work that you do. Firstly, you guys are the unsung unknown heroes in the background, your whole team, everybody who’s involved and all the other people involved in helping people who you don’t know who haven’t yet had a stroke in case they have a stroke.
Bill Gasiamis 1:09:48
I think that’s just fascinating thing to be doing in your life’s work. Like I think that’s just amazing. I just love that there are human beings doing that for other human beings they’ve never met before, in case they get sick. I love it. So thanks for that. Thanks for being on the podcast. I really appreciate your time. And yeah, just giving us an insight into that I think it’s going to be a really fascinating topic and something that the stroke survivors and their caregivers who are listening will take some comfort from.
Professor Stuart Allan 1:10:24
Thanks Bill for getting the chance to speak about research which I care so passionate about, and making a difference.
Bill Gasiamis 1:10:31
Thank you for joining us on today’s episode, I hope you learned something valuable and important. I certainly did. I absolutely love talking to the people who are behind the scenes doing work for people they’ve never met. And that they don’t know, in the hopes of giving them a better result in case they have a hemorrhagic or an ischemic stroke. I mean, it’s just fascinating and amazing that people choose to do that and I’m grateful for them.
Bill Gasiamis 1:10:59
And I probably have, and many of you listening have already benefited from people that have devoted their lives to making our recovery, and the seriousness of the condition that we had to deal with less impactful, it’s just unbelievable. So I hope you got a lot out of it, and you can tell how much I got out of it. To learn more about my guests, including links to their social media and other pages.
Bill Gasiamis 1:11:32
And to download a full transcript of the entire interview. Please go to recoveryafterstroke.com/episodes. Sharing the show with family and friends on social media will make it possible for people who may need this type of content to find it easier. And that may make a massive difference to someone that is on the road to recovery after their own experience with stroke.
Bill Gasiamis 1:11:53
If you’re a stroke survivor with a story to share about your experience come and join me on the show that interviews are not scripted, you do not have to plan for them. All you need to do is be a stroke survivor, or care for someone who is a stroke survivor or be one of the fabulous people who help other stroke survivors.
Bill Gasiamis 1:12:12
Go to recoveryafterstroke.com/contact fill out the form and as soon as I receive it, I will respond with more details on how you can choose a time that works for me and you to meet over zoom. Thanks again for being here and listening. I really appreciate you see you on the next episode.
Intro 1:12:31
Importantly, we present many podcast designed to give you an insight and understanding into the experiences of other individuals opinions and treatments protocols discussed during any podcast or the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.
Intro 1:12:48
All content on this website at any length blog, podcast or video material control. This website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis, the content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.
Intro 1:13:10
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Intro 1:13:32
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Intro 1:13:52
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The post Reducing Inflammation In The Brain After Stroke – Professor Stuart Allan appeared first on Recovery After Stroke.
Keith “Krusher” Rush experienced several strokes at the age of 27 which caused significant deficits. He wrote a book that he hopes will help cover some of the medical bills he and his mother need to cover.
KRUSH: ER & The Strokes
Highlights:
00:54 Introduction
02:52 Keith “Krusher” Rush Had An AVM
10:34 Life After Stroke
17:13 KRUSH: ER & The Strokes
23:04 Life With Humor
28:36 Wrapping Up
Transcription:
Keith “Krusher” Rush 0:00
It’s about me and my mother, when I was disabled my mother was my caretaker she took care of me. Nowadays she’s kind of disabled, she doesn’t want me to put her business out there like that, but she is on declining age every day I’m the one that has to take care of her now.
Intro 0:42
This is the recovery after stroke podcast with Bill Gasiamis helping you navigate recovery after stroke.
Introduction – Keith “Krusher” RushBill Gasiamis 0:54
Hello and welcome to episode 229 of the recovery after stroke podcast. My guest today is Keith “Krusher” Rush, a survivor of multiple strokes, age 27 who is living with deficits that limit his mobility and make it very difficult for him to hold down a job.
Bill Gasiamis 1:12
With his mum in ailing health, Keith has had to find new ways to earn a living. And he joins me on the podcast today to tell his story and promote his first book titled KRUSH: ER & the Strokes. You can get a copy on Amazon and it’s available in paperback and on Kindle.
Bill Gasiamis 1:33
Please listen to the interview to the end and if this interview moves you and you can manage 12 US dollars please purchase a copy of the book. All funds go to support Keith and his mum cover some of their medical bills. To learn more about Keith including links to his social media and the Amazon link where you can purchase the book.
Bill Gasiamis 1:55
And to download a full transcript of the entire interview. Please go to recoveryafterstroke.com/episodes and if you are watching on YouTube, you’ll find all the links to Keith and the link to the book in the description of the video below. Keith “Krusher” Rush welcome to the podcast
Keith “Krusher” Rush 2:19
Thank you sir I’m right here I’m waiting on you buddy.
Bill Gasiamis 2:23
Thanks for being here man. You overcome some most massive challenges. We couldn’t work out the audio. We couldn’t work out the video at one stage but we made it we got here and I’m glad to have you here. Tell me Keith a little bit about what happened to you man?
Keith “Krusher” Rush 2:39
Well first of all Bill you’re a wild one I’m wild too.
Bill Gasiamis 2:49
I’m gonna be Wild Bill, I’m Wild Bill am I?
Keith “Krusher” Rush Had An AVM
Keith “Krusher” Rush 2:52
You’re Wild Bill, okay I’ll give you a brief tale about me. I have three strokes, I had an AVM arteriovenous malformation, a stroke on the brain at the age of 27, now 13 years later I’m 40 and I just wrote a book called KRUSH: ER & The Strokes. Wherever you get the book platform and everything, it’s all the way live.
Bill Gasiamis 3:45
We’re gonna talk about it in a minute, we’re gonna talk about it. So you had an AVM you were 27 years old, and the AVM ruptured and bled and as a result of that you ended up in hospital?
Keith “Krusher” Rush 3:59
Well I was already in the hospital. I had one stroke one week. And they couldn’t find out what was goin on. Then I had a second stroke, they found it in my MRI and by the time I had the third one I was already in the operating room table.
Bill Gasiamis 4:31
Okay, so you were in the right place to have this other situation.
Keith “Krusher” Rush 4:43
Then I had the strokes there.
Bill Gasiamis 4:46
Right. And then they opened up your head to remove the arteriovenous malformation right? To get rid of it. Yeah.
Keith “Krusher” Rush 4:53
Yeah that’s right I don’t know what happened if they got rid of it or they untangled it because it was a big tangle like a golf ball size. And what they did was they had to go in to untangle it. But it leaked 2.1 centimeters of blood on the brain. Yeah. So, you know, I had the third stroke. The third stroke was there on the operating room table.
Keith “Krusher” Rush 5:09
I was in a coma for about four and a half months. I was in the hospital for about seven months. I did tell it in my book though. I tell all about everything, about my diagnosis, and everything there’s Krush ER and The Strokes. It’s the highly anticipated book that just came out this month shout out to the publisher EBL books, they published my book and everything. So we got it rolling and got it going.
Bill Gasiamis 6:31
Okay, let’s talk about that. So you have a publisher. And they’ve supported you to put this book out. Your book is about recounting the story of the strokes and what you went through and what you overcame, right?
Keith “Krusher” Rush 6:49
Well, yeah, my book is about recounting recovery after stroke. But it’s not necessarily just bad. It’s about me, and my mother.
Intro 7:03
If you had a stroke, and you’re in recovery. You’ll know what a scary and confusing time it can be. You’re likely to have a lot of questions going through your mind. Like how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse?
Intro 7:21
Doctors will explain things that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying and head to recoveryafterstroke.com where you can download a guide that will help you.
Intro 7:43
It’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke they’ll not only help you better understand your condition they’ll help you take a more active role in your recovery head to the website now recoveryafterstroke.com and download the guide it’s free
Keith “Krusher” Rush 8:03
When I was disabled my mother was my caretaker, she took care of me. Nowadays she’s kind of disabled she doesn’t want me to put her business out there like that but she’s on declining age everyday. And I’m the one that has to take care now.
Bill Gasiamis 8:41
Okay, so your mom was looking after you but her health has declined because she’s older.
Keith “Krusher” Rush 8:47
Yeah she looked out for me when I went through it, now I’ve got to return the love and look out for her as you see I was just trying to figure out some kind of way possible to make some money because right now it’s hard everywhere across the world. But I was just trying to make a little money and everything and so I had a good idea to tell my story once I got the writing on that one that should go down the road for me finding some other stuff, that’s to be continued though.
Bill Gasiamis 9:40
So what you’re doing is you’re supported by mom, mom’s health is not the best because she’s aged. And now you’re returning the favor. You want to look after your mom and help raise some money and help support your mom and yourself.
Bill Gasiamis 9:41
So you wrote a book, in the hopes of selling the book, so that you can raise some money to go towards your medical bills and daily cost of living and all the usual things that are related. And you’re a stroke survivor. But let’s talk about your situation. You’ve overcome stroke to an extent, but you’re also living with what it did to you. So tell me a little bit about your situation. How are you able to get around? What deficits hasn’t left you with?
Keith “Krusher” Rush’s Life After StrokeKeith “Krusher” Rush 10:34
Well, I was 27 years old in the bottom of my career when this happened, I was thriving and surviving basically all in, I guess I was just young and doing my thing and I was really stubborn, I had my own house, I have my car, I have my job.
Keith “Krusher” Rush 11:09
And next thing you know, I have the stroke. But I’ve been living with this stroke for 13 years now. And because of that, the cause of living with it. I didn’t even think I was gonna make it past a certain age cause like I said, I was 27 when they happened I’m 40 now now so there is life after stroke.
Bill Gasiamis 11:41
Yeah. Tell me about your challenges. What challenges do you need to overcome every day? Are you physically mobile? Are you able to work what’s the situation?
Keith “Krusher” Rush 11:53
I’m not able to hold down a full-time job because I have constant fatigue and everything. And so beause I get so tired easily, I’m not able to hold a full-time job. That’s what my daughter told me but I have a wheelchair it’s a motorized wheelchair to get me around because if I do for a long period of time I get tired.
Bill Gasiamis 12:39
Working is difficult and therefore you can’t earn steady income?
Keith “Krusher” Rush 12:47
I can’t earn a steady income so I figured why not just write? So I’ve been writting since the pandemic in 2020 so I’ve been writing over the last two years. I can get around from A to B in my wheelchair. But it doesn’t last really. I need some help, I need like more I guess financial help with stuff and I need to take care things for me myself and I and my mom. You know I just got bills bills bills. They’re all around.
Bill Gasiamis 13:58
Tell me about your your home life so you live at home with your mom at the moment?
Keith “Krusher” Rush 14:04
My mom lives with me. She lives with me for about 10 years or so. She lives in my house. So basically she stays with me and everything. I have the have I guess 24-hour care because she is fixing my medicine. It’s just the daily cost of living that’s a burden for us. Man I swear, healthcare is crazy in the United States, but I don’t wanna dwell on the bills too much. I know we just signed the bill over in the United States, pharmaceutical bill and everything. But that doesn’t get to me until the beginning of the year.
Bill Gasiamis 15:29
Okay, so you’re at home, you’re not working. You have a lot of medical bills.
Keith “Krusher” Rush 15:37
Well I am working, I’m earning cheques by writing these books.
Bill Gasiamis 15:44
Yes, yes, but you’re not working a traditional job. And you’re caring for your mom at the same time. She’s also trying to care for you. But her health is failing a little. And, now you’re in a wheelchair because of the stroke so you can get around and you can achieve most things that you need to achieve on a daily basis.
Bill Gasiamis 16:11
But you guys together you guys need some support. You need to raise some money. You need to become financially independent or work towards that. And you’re writing the book in order to support you and help you with that.
Keith “Krusher” Rush 16:25
That’s right. Well I’m just gonna say, speaking on behalf of my mother she doesn’t like the business idea, but I do you know when I say that we need help, I must say my mom is a proudful she is very proudful. I am too at a certain extent though. Because when you need something you need it.
Bill Gasiamis 17:03
Yeah. Tell me how old is mum?
Keith “Krusher” Rush 17:06
I think she just turned 65.
KRUSH: ER & The Strokes
Bill Gasiamis 17:14
Okay, so you have written a book, it’s been a bit of a challenge. Mum is not necessarily keen on this kind of request for support, in this way, she’s a very proud woman. But you definitely have, I think, in my opinion, a great idea here. Because the books going to be useful for other people, it’s going to be helpful for other people. And it’s going to also support you guys and be helpful and useful for you guys.
Keith “Krusher” Rush 17:42
That’s right, I’m gonna do whatever to me is necessary to support me and my mama.
Bill Gasiamis 17:50
Beautiful. And you’ve already overcome so many obstacles. Well, all the stroke obstacles, all the other challenges you’ve written a book, you found a publisher. You’ve published it. It’s now live on Amazon. You got an awesome cover. And basically I’m going to hold that up to the screen right now. That’s the cover, that’s what the book looks like.
Keith “Krusher” Rush 18:15
That lady in the picture. I don’t know who she is. But that’s my Cinderella right there if you notice in the top right-hand corner shout out to my Cinderella she was a lady by the name by Gabriella. Let me tell you a story real quick.
Keith “Krusher” Rush 18:41
When I was in the hospital, I was unconscious coming back from my coma you couldn’t say nothing to anybody but you can hear what people whispering in your ear. And a lady by the name of Gabriella came up to me whispered in my ear and I saw her walk away. And next thing you know she turned around and was looking back at the time. I swear she was my Cinderella, she is my Gabriella whoever she is, if anybody knows her, have her to read out to me.
Bill Gasiamis 19:42
What’s her name again?
Keith “Krusher” Rush 19:45
I think her name is Gabriella. I call her my Cinderella
Bill Gasiamis 19:53
Gabriella your Cinderella. Okay, so she’s made it onto the book cover, you’re in the book cover.
Keith “Krusher” Rush 19:59
She’s made it on to my book cover and she would just holler at your boy that’s all she got to do let me do the rest of the talk. I just wanna talk to her and get to know her a little bit so whoever she is, Cinderella, Gabriella, whatever it doesn’t matter I’ll know who she is when I see her, I just gotta see her one time. But that’s her on my book cover.
Bill Gasiamis 20:39
Okay, so the book is available is it a hard copy? Or can you just get it on Kindle at the moment?
Keith “Krusher” Rush 20:46
You can get it everywhere with books available. You can go to Amazon, eBook, Kindle, book stores. I believe it’s coming in paperback, it will be available in whatever book stores you go just ask for KRUSH: ER & The Strokes. It’s a funny thing they came out to my name too. My name is Keith Rush okay we’re gonna call it KRUSHER you put the K in the RUSH and you add ER.
Bill Gasiamis 22:03
Okay. Now I know how that happened. Awesome. Well, it’s an awesome name. It’s an awesome cover. I want to read a little bit about what Amazon says about the book.
Keith “Krusher” Rush 22:14
It tells my whole diagnosis. It’s about 55 pages, 10,000 word memoir.
Bill Gasiamis 22:26
Nice, nice. So this is what it says on Amazon. It says Keith “Krusher” Rush’s memoir recounts the trials and triumphs of a young man who suffered a stroke in his late 20s and must rely on his mother for care. The Account provides insight into the difficulties he and his mother have had to face to make ends meet and survive. Rush approaches his life story with good humor and optimism without shying away from addressing the more distressing parts of his life. That’s what it says on Amazon about your book.
Life With HumorKeith “Krusher” Rush 23:03
You know you have to approach every day with humor man, you just got to laugh to keep you from crying sometime. I had a cry for one day, one-day ever since the stroke. I’d cry about me but I had no pity for me, I wasn’t pityful. Faith without words is dead. You know what they say? And I’m not dead, I’m still here. So tell the Devil or whoever. Ha ha.
Bill Gasiamis 23:56
Yeah. You’re, approaching life with humor, you’re just doing life, you’re just looking forward, you’re not feeling sorry for yourself, you’re just getting things done, you’re publishing books, you’re naming me you’re giving me a name a Wild Bill. I mean, it’s awesome.
Keith “Krusher” Rush 24:15
Wild Bill that’s right.
Bill Gasiamis 24:17
I love it, man. I absolutely love it. So what we’re going to do is now we’re going to tell people what we want them to do. So anyone who’s listening to this podcast, what we would like them to do is go to amazon.com. When you go to amazon.com you’re going to type the words, Keith “Krusher” Rush, that’s the author’s name.
Bill Gasiamis 24:51
That’s going to bring up the title of the book. It’s going to bring up KRUSH: ER & The Strokes, the awesome book is going to look like this. That’s the cover of the book right there. And for $4.12, you can buy the Kindle version, it’s less than a cup of coffee.
Bill Gasiamis 25:13
And most people buy two or three coffees a day. So if you go to amazon.com, and you type in Keith “Krusher” Rush, and you see the book and you buy the book, that money is going directly to help Keith and his mom pay their medical bills, correct.
Keith “Krusher” Rush 25:34
That right I’m just trying to think of something creative. I was thinking outside the box, what I should do. I know that you know, my mother doesn’t want me to be in her life. To be in pain but people need to know people need to hear people needs to know my story. And that I’m out here I’m not begging, I’m just earning a right. I’m just earning a living, where it’s not is not come get me come get your boy. I’m just out here trying to get in.
Bill Gasiamis 26:38
Lots of people writing books. And the whole purpose of writing a book is to sell it. It’s got nothing to do with begging. It’s got to do with earning a living and you’re doing exactly what everybody else does. They write a book, they put it online for sale. And then they wait for people to buy it.
Bill Gasiamis 26:55
And there’s nothing wrong with that, man. That’s exactly what everybody else does. Who’s ever written a book, it’s about telling a story but also it’s about turning a profit if possible. And your cause is an awesome cause you want to be independent to support your mom so that you guys can pay your bills and go about life.
Keith “Krusher” Rush 27:17
That’s right, you got the right story Wild Bill.
Bill Gasiamis 27:22
I am, I’m writing a book. It just takes a while you know, it takes a long time Keith to write a book, I am writing one and I’ll get it out there one day. But for right now it’s about you, we want to make sure that we get your story out there and we tell people about your book. So that’s exactly what we’re doing. And I’m going to share the link of your book and it’s gonna make sure that people can go and have a look at it and buy it and support you.
Keith “Krusher” Rush 27:52
I want everybody in my family I’m gonna give a shout-out to everybody in my family I just want them to believe in me, believe on what I’m doing and see what I’m doing I’m not trying to tell anybody or nothing. I’m just trying to make something happen and be creative.
Bill Gasiamis 28:25
Make something happen instead of waiting around for things to happen you’re being actively involved in trying to make something happen.
Keith “Krusher” Rush 28:32
That’s right you already know man.
Wrapping Up
Bill Gasiamis 28:35
Yeah, I love it. So man, thank you so much for joining me on the podcast I am going to let people know about this people will support it and we’re looking forward to hearing about the hardcover version which is going to be a little later on down the track.
Keith “Krusher” Rush 28:55
Yeah that’s why I only get a couple of dollars on royalty because I might not let the cat out the bag yet but you go beat him for me again really. I’ve got a couple of other projects at work and now everything is in the process right now.
Bill Gasiamis 29:25
Yeah, so your publisher is supporting you with this right?
Keith “Krusher” Rush 29:28
They are, EBL books. I forget the editor’s name but I EBL books. They come through for me. They’re working it out for me.
Bill Gasiamis 29:54
Awesome man EBL books. So, Keith, thank you so much for connecting with me. Reaching out thanks for doing what you’re doing. Thanks for looking after your mom and supporting her.
Keith “Krusher” Rush 30:03
Yes sir, and shout out to my girl Chrissy Mathews she’s helping me out. She told me about your podcast. And I said I need to jump on it immediately. I need to jump on right away. I think it was on Thanksgiving.
Bill Gasiamis 30:36
Yes. So that’s Chrissy Matthews, your friend?
Keith “Krusher” Rush 30:39
Chrissy Matthew she’s a friend of mine, I’ve called my sister aid. She lets me know by ear for now. She’s my right hand lady.
Bill Gasiamis 30:54
Okay, Chrissy Matthews, thank you for putting me in touch with the “Krusher” over here. We’re gonna raise some awareness, we’re gonna get this out. And we’re gonna see if we can sell a few copies of this book.
Keith “Krusher” Rush 31:08
I can do what they do brother.
Bill Gasiamis 31:11
All right, well, you keep in touch. Let me know when the hardcover is when the print version is available. In the meantime, we’ll let people know about this book, and we’ll let people know about how they can support you. And we’ll see if we can maybe sell a few copies. We’ll see if we’re going to be able to do that.
Keith “Krusher” Rush 31:40
Sounds like a plan to me Wild Bill.
Bill Gasiamis 31:43
Awesome mate. Well, thanks for the new name as well. I really appreciate it.
Keith “Krusher” Rush 31:48
Alright, no problem sir.
Bill Gasiamis 31:53
High five man, high five. Thank you all the best!
Keith “Krusher” Rush 32:00
I love you already Bill and I don’t even know you.
Bill Gasiamis 32:05
Thanks, man. I love you too. I love your passion. I love your energy. I love your creativity. I love the way you’re just taking it on man, and you’re just going for it.
Keith “Krusher” Rush 32:17
You already know bro. You the man Wild Bill.
Bill Gasiamis 32:25
All right. Keith thank you, man. Thanks for being on the podcast. Well, thanks again for joining us on today’s episode. I hope you enjoyed this episode. I certainly did. “Krusher” is an amazing person. He made me laugh when he renamed me and gave me the name Wild Bill. If you can play support the crusher, if you can, our royalties from his books will go to covering his mum’s and his medical costs.
Bill Gasiamis 32:54
So that will be a really amazing thing if we can help support him in a little way. This is exactly why I do the podcast, I love the opportunity to promote people’s books and give people shout outs and plugs. And this is one of the first times I’ve asked for somebody to be supported like this. And I hope that you will consider it because it is a really important cause.
Bill Gasiamis 33:20
And I think it’s going to make a massive difference to supporting the stroke survivor. And if we can, that’d be great. Now if you’d like to support this podcast, the best way to do that is to leave a five star review and a few words about what the show means to you on iTunes and Spotify. If you’re watching on YouTube, comment below the video, like this episode, and to get notifications of future episodes, subscribe to the show on the platform of your choice.
Bill Gasiamis 33:46
If you’ve subscribed on YouTube, be sure to hit the notifications bell so that you can get notified of future episodes. Sharing the show with family and friends on social media will make it possible for people who may need this type of content to find it easier, that may make a massive difference to their recovery.
Bill Gasiamis 34:06
And that will support them to feel better about the journey that they’re on and overcome some of the struggles that they are challenged with. If you are a stroke survivor with a story to share about your experience, come and join me on the show. The interviews are not scripted, you do not have to plan for them. All you need to do to qualify is to be a stroke survivor care for someone who is a stroke survivor.
Bill Gasiamis 34:35
Or you are one of the fabulous people that help other people who are stroke survivors. Go to recoveryafterstroke.com/contact Fill out the form. And as soon as I receive your request, I will respond with more details on how you can choose a time that works for you and me to meet over zoom. Thanks again for being here and listening. I really appreciate you see you on the next Episode.
Intro 35:01
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals, opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.
Intro 35:18
All content on this website at any length blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis. The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.
Intro 35:40
The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.
Intro 35:55
Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be call triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.
Intro 36:20
Medical information changes constantly. While we aim to provide current quality information in our content. We did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide however third-party links from our website are followed at your own risk and we are not responsible for any information you find there.
The post KRUSH: ER & The Strokes – Keith “Krusher” Rush appeared first on Recovery After Stroke.
A hemorrhagic stroke at age 33 and 3 additional bleeds in the brain at 34 seriously challenged Kyle Johnson. Listen to his story of recovery.
Highlights:
01:44 Introduction
02:47 Pontine Cavernous Malformation
09:24 Getting Into Surgery
15:19 Dealing With Self-Esteem After A Stroke
23:10 Being Able To Walk Again
30:22 Exposure Therapy
34:45 It’s Okay To Offend People
43:24 Self-Awareness
50:16 Stroke Humor
57:31 Life Before The Stroke
1:03:22 The Perpetual Pirate
1:11:19 Falling Out?
1:25:18 The Recovery After Stroke Podcast
Transcription:
Kyle Johnson 0:00
The first one I got the nickname in the hospital of a really bad word idiot because I actually drove myself to the ER because I was home with my son alone. Like I went home I fed the dogs drove myself to the ER with an eyepatch on like I do these days, and it was just a bad thing.
Kyle Johnson 0:19
And I developed these tics that you would notice I’d rub my hand my thumb across my forehead because right down the center, I could feel a difference. Or I would raise my hands up above my head all the time to make sure I still could, because that was one of my symptoms was I couldn’t raise my hands above my eyeline. So I developed the nervous habit of constantly raising my hands above.
Intro 0:51
This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.
Bill Gasiamis 1:04
Hello, and welcome to episode 228 of the recovery after stroke podcast. To learn more about my guests, including links to their social media and other pages and to download a free transcript of the entire interview, please go to recoveryafterstroke.com/episodes.
Bill Gasiamis 1:21
If you would like to support this podcast, the best way to do it is to leave a five-star review and a few words about what the show means to you on iTunes and Spotify. If you’re watching on YouTube, comment below the video. Like this episode, and to get notifications of future episodes, subscribe to the show and hit the notifications bell.
Introduction – Multiple Hemorrhagic StrokeBill Gasiamis 1:44
My guest today is Kyle Johnson who experienced a brain hemorrhage at age 33. Three brain hemorrhages at age 34. And then brain surgery, Carl has overcome a lot and is still dealing with some of the things that stroke has left with him. Kyle Johnson, welcome to the podcast.
Kyle Johnson 2:04
Thank you for having me Bill. I appreciate it.
Bill Gasiamis 2:06
My pleasure. Thank you for reaching out and being on the podcast. You are somebody who I can relate to a lot because one of the questions that I asked people about before they jump onto the podcast just to determine that there’s some kind of a stroke survivor is what kind of stroke did you have? And when did you have it? And how old were you at the time? And you’ve got here you were 34 times three? And then surgery at 34? And they’re all hemorrhagic strokes. Tell me a little bit about what happened to you?
Kyle Johnson Pontine Cavernous MalformationKyle Johnson 2:48
I didn’t know any of this, obviously, until I was 33. But I was born with what’s called the pontine cavernous malformation of the brainstem. I don’t think they could have made it any harder to say or pronounce remember, but they did.
Kyle Johnson 3:03
So when I was 33, pretty much what happens. What I understand, I’m sure someone out there is going to correct me if I’m wrong, is the blood vessels I like to call it they get really close and they hug really tight and then they explode.
Kyle Johnson 3:17
So inside my brainstem, I had one of these malformations, and it just started bleeding one day. And so that was in, I think it was July of 2016 was my first one. And then I had three more in 2017. I was 10 months, 13 days later was my first one.
Kyle Johnson 3:40
And then a couple of weeks later, or sorry, two months later was my third one. And then I’m not sure that between my third and my fourth one ever really healed. And then fourth one is when he got really bad where, I couldn’t move and I was just constantly throwing up blood.
Kyle Johnson 4:00
So I got rushed to the ER for that one. And of course, you know, all the nurses and everybody, they already had my bed made up and they knew me and their ICU at that point because I’d pretty much lived there. And then they put me in pretty much a chemical-induced coma for about a week while they figure out what they’re going to do.
Kyle Johnson 4:18
And what they ended up doing was a week later, they cut me down the back of my neck and took out a piece of my skull, put a tube in there, cleaned everything up on the inside, pulled it out, put a piece of titanium in there and sewed it back up and sent me on my way. So yeah, those 18 months were give or take 18 months are pretty wild to say the least.
Bill Gasiamis 4:44
Yeah, you bring back so many memories, not pleasant ones. Oh my god. I had a bleed in Feb. 2012 in March 2012 in November 2014 And then Brain surgery in November 2014. And it’s kind of the same thing they sort of said to me, it may have never really healed and that’s why it continue to bleed out.
Bill Gasiamis 5:11
And mine wasn’t a cavernous malformation. Mine was an arteriovenous malformation, which is just in a different location, but it’s a similar kind of thing. And I didn’t find myself particularly doing the anxious thing of worrying what about the next one?
Bill Gasiamis 5:29
Or if I have a next one, but what I did do was I did do the whole is this another one for many years? Because I was having weird sensations, feelings, etc. Did you have the whole is this another one? And then you were well, surprised or whatever to find out that in fact, it was. How did that happen?
Kyle Johnson 5:56
It’s actually a question I get a lot was, you know, knowing what the first one felt like because the first one I got the nickname in the hospital of really bad word idiot, because I actually drove myself to the ER, because I was home with my son alone. Yeah, exactly. I like I went home, I fed the dogs, I drove myself to the ER with an eyepatch on like I do these days, and it was just a bad thing.
Kyle Johnson 6:22
And I developed these tics that you would notice I’d rub my hand, my thumb across my forehead, because right down the center, I could feel a difference. Or I would raise my hands up above my head all the time to make sure I still could, because that was one of my symptoms was I couldn’t raise my hands above my eyeline.
Kyle Johnson 6:46
So I developed the nervous habit of constantly raising my hands above my head, because I was always scared that it was going to have it again. And so much so that one of my buddies and I got together. And he’s a back end programmer.
Kyle Johnson 7:03
And we built an app this is not a plug or anything, because it’s not available anymore. But it was for me, where it was an application where it could go in there and make it sit on the phone to say, hey, every duration of time, like two hours or an hour, you have to push something on your phone, like a medical alert to say, yep, I’m still alive, right.
Kyle Johnson 7:27
And if you didn’t push the button or acknowledge it, it would give you a countdown. And then if you didn’t do it, still, it would then reach out through text message through people you set as your contacts and show them like, Hey, Kyle needs help this is there’s last known location from GPS on the phone.
Kyle Johnson 7:46
That’s how nervous I was. Because I was, you know, I think you’ve been through it, you know, it’s a scary situation. When it actually happened again, it was of course, a bunch of denial, where I was downstairs doing something and I was sort of feeling really weird.
Kyle Johnson 8:07
And I was like, I’m just really hungry, right? It’s like, ran upstairs and started eating. And the best way I could describe it was that I was the balloon and the water. So I was a water balloon. And somebody took a needle and just popped the balloon.
Kyle Johnson 8:24
And this felt like rushing water out of my body. And that was the strongest indication besides my eye because it did fix itself the first time and then it just stayed. But so that was a really strong indication for the second one. And then the third one was just, I was really dizzy and didn’t feel good.
Kyle Johnson 8:47
So I called up the doctor. She’s like, yep, come in. And I was like, are you sure? And I remember her response was you’re bleeding through your brain. You, might want to come in. I was like, Okay, because, as you know, it’s kind of expensive.
Kyle Johnson 9:03
And then the last time was, I’ve been thrown off. I couldn’t lay flat or sit up. So if I did any of those movements, I would automatically throw up and I just started throwing up blood a lot. And I called my buddies and he came and picked me up. And I’m glad to say I didn’t vomit in his car the whole time.
Kyle Johnson Getting Into SurgeryKyle Johnson 9:24
Huge win for me. And part of that was, well, we got to the hospital and they’re just like, you’re back. I was like, Hey, guys, I just missed you so much let’s go. So yeah, it was trippy. And I know I’m sure you felt this too it was one of those where you want something to be done so bad about it because you have no life at a certain point.
Kyle Johnson 9:48
But at the same time, you want to be invited to the dance, which you don’t want to go. So when they’re like hey, we’re going to do surgery. It was like a sigh of relief but at the same time like oh my God, what is actually happening type of situation?
Bill Gasiamis 10:05
That was scary. I remember exactly that third time I was avoiding the surgery, you know, we can probably get away, can we get away with it? Can we get away with it? And third time my surgeon came in and said, We have to go in now.
Bill Gasiamis 10:19
And she said, are you up for it? And that was a sigh of relief yes let’s get it done and dusted. She came back and checked up on me the second day and said, Are you still on board with surgery? And I said, Well, yeah, I’m on board I am.
Bill Gasiamis 10:35
And I wasn’t confident that I didn’t respond confidently, but I was. And then we went through all the pre op procedures, and the pre op procedures included, you know, going into get assessed for surgery. So it’s a different kind of assessment.
Bill Gasiamis 10:51
And then the day of that assessment, which was about less than a week before surgery, as we were leaving the hospital, and we’re going through the emergency area exit or whatever it’s called the ER. I started to feel, all my left side just just go in my eyes, I couldn’t see and I was freaking out, and I was really scared.
Bill Gasiamis 11:20
And I said to my wife, I’m experiencing all of this stuff right now. And we cannot leave, we’ve got to go back to the ER and get somebody to look at us. And I’ll remember, we’re heading to my parents house. And they were just waiting for us to go for dinner.
Bill Gasiamis 11:36
And we rang them and said, something’s wrong, we have to stay here, we’re not leaving. Anyway, I’ve got cleared after about another three or four hours and it was, you know, well into the late hours of the night. And then we got sent home. And then a week after was surgery now what made it even worse for us, and I’ve mentioned that on a couple of previous podcast episodes is that my mother in-Iaw had passed away and been buried literally a week before that.
Bill Gasiamis 12:06
So we were just at our wits end, like we didn’t know what the hell was going on. And my wife broke down on the way home in the car, crying and having just a panic attack about what the next few days are going to be like, and what’s going to come of it, what’s going to happen. So it’s pretty safe to say that I was relieved one moment, and then I was shitting myself for the rest of it.
Kyle Johnson 12:32
100% Yeah, I mean, I don’t remember a lot of the week in between that what you’re saying is 100%, right. And it’s just one of those situations where it is relief of like, alright, they’re gonna attempt to at least do something. But at the same time, because I wasn’t coherent to a certain point, right?
Kyle Johnson 12:57
It’s all this stuff that they’re talking at you and with your family and stuff, like, well, he could die, or this or this or this right. I don’t remember a lot of that piece. But I do remember the emotions that came with it. And I do remember the feeling of I don’t know if the word is dread or despair. But, you know, you’re adults, your parents, your significant other, your caretaker at the time is there.
Kyle Johnson 13:30
And, you know, you it’s a hard situation to kind of wrap your head around unless you’re in that situation, which I want to be very clear. I don’t wish that upon anybody, because it is asstastic situation to be in. Just, it’s not fun. So yeah, it’s been, it’s been a journey. And I think, it’s taken me, I guess five years, almost six years, to be able to at least open up a little bit more about it in general.
Kyle Johnson 14:02
Just because I don’t know about you, but like, I was mad for a long time, I was upset with my body. I was you know, the whole like, why me situation and genetics thank you so much for that one. But, you know, it’s hard to kind of wrap your head around. And, you know, I have more respect for my wife than I probably ever could.
Kyle Johnson 14:25
She’s done more for me than any other human. She’s what I call my superhero without a cape, we’ve been together 23 years now. And she’s, she’s been there through all of my stuff and all the ups and downs and yeah, it’s a weird situation. So I can see that 100% of just that feeling of what is going to happen?
Bill Gasiamis 14:59
Only one way to find out is get through and somehow see later, like, if you have the opportunity to just see what comes of it. I mean, that’s not a shallow conversation. You can’t just say, Oh, let’s see what happens. Well, it’s actually really deep.
Dealing With Self-Esteem After A StrokeBill Gasiamis 15:19
But that’s kind of where it starts, it starts Oh, well, let’s just see what happens tomorrow and the next day, and then in three months, and then six months, and then we’ll see what continues to happen. Tell me a little bit. Let’s go back to that section, where you said that you didn’t like yourself. So what specifically about yourself, didn’t you like? What were you angry at?
Kyle Johnson 15:43
I felt like my body betrayed me. In a way. You know, we’ve been working out a lot doing the healthy thing. And I always joked that I was probably in the best shape of my life. So now I joke where I’m like, I don’t want to be, I’d rather be in the middle most shape of my life, just to deter some of these chances again, because inadvertently, they found a second malformation when they were doing the surgery.
Kyle Johnson 16:09
So there is a second one in there. But I get MRIs and everything, nothing’s going negative so far. So high five on that one. But from not liking myself, it was a piece of anger, that I couldn’t believe that I had something like this or that something like this could happen to everybody always thinks that why me? How did this happen?
Kyle Johnson 16:33
And then it became, like a, I think it’s people always talk about the 12 steps, right? Like anger, denial, whatever it is, and that I went through the dial, but I went through, you know, researching just tons and tons and tons and my specific piece, there’s not a ton out there about it. And then just disbelief, and then the acceptance of just losing that part of me. And that’s, I think that’s the piece that, like, if I had any advice to anybody, it’s just be nice to yourself.
Intro 17:08
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind, like, how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, and doctors will explain things that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery.
Intro 17:38
If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website. Now, recoveryafterstroke.com. And download the guide. It’s free.
Kyle Johnson 18:11
Because you being mean to yourself and you hating or being angry is not going to help at all. And I know it’s hard to to listen to someone and be like, oh, yeah, that makes sense. I’m just going to wake up tomorrow and snap out of it. But that’s the piece like I’m on a couple of groups. And you know, people ask for advice. And I’m always my response is, Well sleep, because you need it. And to be kind to yourself, because if you’re not kind to yourself, no one else is going to be. So to me, it was just anger, just like how could I do this to myself?
Bill Gasiamis 18:50
Just going about trying to come to some kind of terms of acceptance. And then you have to ask those crazy questions, which are not really real, you didn’t really do anything to yourself, it’s just that that’s the stage of the process, you got to ask yourself that question and then determine whether or not is it really wasn’t really me. And if it was, well, then how do I feel about myself?
Bill Gasiamis 19:18
And then what am I going to do about it? And am I going to do something about it? Or am I just going to dive into the pits of depression? But in your case, it sounds like you went through the process of that they and they helped you get an answer whether you liked it or not. And the answer helps you move forward in to the next stage, you know, beyond denial and anger. You know, it’s kind of like grieve the whole grieving process. Did you do the bargaining stage where you were? If I get through this, I’ll do this. Did you do any of that?
Kyle Johnson 19:52
I can’t even tell you how many times I did that. I think the first one was the worst by far because so our son Ryan I was he had just turned to like, right when my first stroke happened, and I lost my father when I was right around two. So of course, my mind is going absolutely insane. And I, there was a couple things I did in my mind that I think they’re insane now, but they helped me at the time. So one was, in my mind, this is really strange. So I apologize to everybody out there.
Kyle Johnson 20:27
But like, I would imagine my brainstem, like a clothesline is real tight, I match my brainstem, and I would literally put stakes around it with caution tape. In my mind, it’d be like, nobody touched this unless you’re going to help fix it. And then I would say to myself, three things, get better get home play with Ryan. And obviously, Melissa, my wife who’s like, I’ve already said the best person ever.
Kyle Johnson 20:56
Besides that, you know, being with him. You know, it’s understanding I hadn’t realize my why really fast of what am I in here for? And what do I need to get out of here for, and that was probably something that I may have done inadvertently, but focusing on why I want to still be here and focusing on why I need to be out so I can be with my family and make sure that they’re taken care of and you know, they don’t see me with tubes and all the fun stuff inside me.
Bill Gasiamis 21:29
Yeah, you’re a really cool, dude, I’ll tell you why. Because the symbolism of what you said, about placing stakes around your brainstem and then putting caution tape around that, I’m not sure if you actually realize how much of a positive influence impact that makes, because it’s creating neural pathways around protecting self-protection of that zone, and telling your body to be careful with it, that is actually something legitimate that’s happening. So when I was waiting to learn how to walk again, I was imagining myself walk again.
Bill Gasiamis 22:09
Exactly the same reason creates a neural pathway, a neural process that is the same as if I was walking, even though I hadn’t got back on my feet yet. So that when I got there and started walking, my body was familiar with walking, even though I hadn’t physically done it, because it had already created the pathways.
Bill Gasiamis 22:30
So what you’re doing is saying, with the rest of your body, you’re going, you guys that are handling, you know this part of me my brain, you guys need to take caution there. And you need to not create a negative impact in that space. And I’m not sure if you realize, but that is actually doing a world of good in your space visualization, and having that kind of approach to it. And that kind of care that you’re giving yourself in that space in your head is next-level amazing.
Being Able To Walk Again After Multiple Hemorrhagic StrokeKyle Johnson 23:10
I appreciate that. Thank you very much night. I didn’t know that it was just, I thought it was something weird that I was doing to get through all the shenanigans that I was going through at the time. If you don’t mind me asking you a question. How long did it take you to regain your ability to walk and stuff like that?
Bill Gasiamis 23:28
Within four, four weeks, I was walking again, I wouldn’t say I was walking confidently or well, or anything like that. But to anyone who knew me, I was upright, I was walking. As far as they were concerned, the job was done, you know. So but after that what came was the knee, my left knee would collapse on me every so often. And give them multiple times a day. So when I’d be standing still in one spot, it would collapse when I’d be walking or collapse.
Bill Gasiamis 24:01
And that would make me feel like falling over. It was always numb and it still is numb. So when I was getting used to being on that leg again, I wouldn’t know where the leg was in the world like in space. And I’d put my foot down without thinking really like my old version. And then I’d be find myself on the ground because my leg hadn’t woken up to being on the ground yet my right side had but my left leg didn’t know that it was supposed to be in the same situation and it would just collapse.
Bill Gasiamis 24:41
So I didn’t feel good about walking probably for many years, although nobody would have been able to tell and what I find myself doing is leaning. I find myself off balance and leaning to the left a fair bit. And as I do it, which is even stranger when people are new Next to me, I find myself walking into their path or pumping into them with a wife.
Bill Gasiamis 25:05
Continuously it gets annoyed at me because stop walking in front of me would ya. So, it took the best of a month for me to walk again. And away from the wheelchair where I said to them, I’m going to walk without the wheelchair today. But then, yeah, there’s still rehab, and still outpatient rehab and still training to get it better.
Kyle Johnson 25:33
Yeah, I know I had the same thing. I wobble when I walk. So for you, it was your left side. For me, it was my right side. So during my surgery, my right side stopped working completely. And they came out and told my wife, my mom and everything, they’re like, Well, you know, his right sides not working. And his face is palsy on this side, you know, he’s probably going to be in a wheelchair, and he’s going to have a feeding tube and all that stuff. And that was like halfway through the surgery.
Kyle Johnson 26:02
And that’s what my family got to hear. So coming out of it, like, I guess it was a half hour or an hour, before the end of the surgery, my arm just started doing this. And they’re like we’re done. So that’s when they patched it back up and do exactly what you said, I had to, I think it was four or five different times was restarting with speech. I know I see double vision and my eyes bounce.
Kyle Johnson 26:31
So I haven’t seen a static 3d image in like six or seven years. And that exactly like what you said was, so I had a walker, because I lived in the hospital pretty much with rehab speech, OT PT, all that super awesome, great stuff. And I left with the walker. And I remember one day just being like, I’m either gonna build confidence or reliance, there is no in between.
Kyle Johnson 26:54
And to be able to show my son, hey, adults are fallible, I have to correct myself to learn how to talk again, to understand language to understand sounds, and to walk in, it’s my fault. Guess what, dude, let’s get backed up. Let’s go. And that was a really good, I hate to say it. But that was a really good takeaway for him to be able to see people struggle and to understand it’s okay.
Kyle Johnson 27:18
And so to your point, it’s, it’s, people don’t know, but But you know, you know that when you’re a little wobbly, or, like, my wife knows that she needs to walk on my right side, because I’m gonna bump into her first of all, and then I can’t hear out of my left ear anymore. So it’s kind of like it, she just holds real tight, you know, and I just bumped into her and walk into a wall or something.
Kyle Johnson 27:41
She’s like, You okay, I’m still here. We’re good to go. So I fully understand that. And, you know, it goes back to the people that understand it a lot that you’ve been around, or that we’ve been around that I probably say thank you too much to them. Just because what they’ve done and what they’re able to do versus a stranger on the street that they don’t know.
Kyle Johnson 28:03
You know, they look at you and they’re just like, I’m sure you’ve heard this a million times. It looks fine. Right? Well, I can always pull the card and like half. So I got that going for me. But yeah, it’s That’s crazy to think of. And do you ever look back and just thinking in amazement, almost of where you come from, in a way? So my wife makes me do this, she like pulls out her phone.
Kyle Johnson 28:35
And she’ll make me watch a video of like me trying to move my hand or something. Or talk skills, look how far you’ve come? And I’m like, I don’t want I don’t want to see this. Like, I just don’t want you to watch it at the goodness. Do you ever get that sense of wanting to go back and watch or seeing stuff? And you’re just like trying to process it again? How do you get through some of those things?
Bill Gasiamis 28:59
So at the at the beginning, it’s traumatic. And yeah, I do think back and I don’t have a lot of, you know, 10 years ago, there wasn’t a lot of reason to. And I didn’t know any better to record myself doing any of that stuff. And post it on social media and you know, share an inspiring story, like a lot of people do nowadays, which I think is amazing. So I don’t have much to look back at.
Bill Gasiamis 29:24
But we do have a lot of memories, and my wife and my kids remind me sometimes when things come up, but yeah, that gratitude that whole, super grateful for the fact that we’ve come through an amount of it, and we somehow unskilled pretty much, you know, we were in our 30s But we were very childlike. You know, we had never really faced adversity. We were very naive to the world still.
Bill Gasiamis 29:52
And then we get to the point where we’re dealing with this stuff and without having the skills from past experiences, we found the skills and, you know, we we found a way through, we made some good decisions, we made some bad decisions, majority of them were good. And we came out the other side. The thing about going back and reviewing the footage of you talking, or you’re in hospital and all that kind of stuff, it’s traumatizing.
Exposure TherapyBill Gasiamis 30:22
And I know a lot of people would like to avoid reliving the trauma. But what that is, is there’s a psychological process in counseling that people that a counselor will take you through, which is specifically to expose you it’s called exposure therapy to expose you to the trauma that you have experienced more than once regularly. And what happens is, then it becomes a memory of the exposure, not of the trauma. So it kind of separates you from the trauma and leaves the trauma in the past.
Bill Gasiamis 30:22
And then you talk about it and remember it from the next stage of the trauma, which is the memory of it. And then every memory that you’re going back and remembering is a memory, you’re not remembering the trauma. So what it does, it’s it’s how you heal, and leave trauma behind. And that’s why I say counseling, counseling, counseling is the most important thing. It’s not the most important thing.
Bill Gasiamis 31:26
They’re all the most important thing. But in this context, because what counselling does is expose, it allows you to talk about it regularly, to a point where you eventually I kind of got sick of talking about the bad part of it. And then I kind of made all these came up with all these conclusions and changed my opinion of what his conclusions were at the beginning. I’ll never be able to have a good life. I’ll never be able to do this all the I’ll nevers.
Bill Gasiamis 31:56
And then it was like, what are you doing now with your stroke? I started a podcast oh you started a podcast? Ah, okay, that’s it. Tell me about that. And then it’s like, would you have ever done that before? And I said, No. Why did you start a podcast about stroke? I don’t know, it was about this. And about that. And then you get to this stage where you’re doing these things that are because of the experience that you had.
Bill Gasiamis 32:24
And you’re trying to reconcile your new identities who the hell am I, you know, why am I doing this? And why did that have to happen for me to do this? And then I started reflecting back on that trauma positively. Because it led to all these other things. All this growth, that’s like, shit, that was a really bad experience. But oh, my gosh, look, how much good has come of it?
Kyle Johnson 32:55
Yeah, that’s something that my wife, like, I just keep going back to her. Because she’s the one I kind of kept me in line, let’s be real. And she’s probably the most positive person I know. And is exactly right. I mean, you obviously said it way more eloquent than I ever could. But that’s exactly right. It’s how do we, how do we look at the experience?
Kyle Johnson 33:19
Because like I said earlier, I wouldn’t wish this on anybody. But at the end of the day, what positives can we take away from this? What can we share with people so that, you know, I get a lot of questions inadvertently, about the stroke process, or what I went through or even, you know, some of the people I work with, they know that I’ve had things, and they’re asking how they can ask, right?
Kyle Johnson 33:46
And which I think is really cool, that they’re at least engaging, and they’re trying to understand because, you know, being on this podcast is, I’m an open book, right? You asked me a question, I’m gonna answer it. And they know that about me. And we build those relationships. And it’s really awesome for them, to be able to hear the experiences and the things we went through and the things I went through.
Kyle Johnson 34:05
And then be able to say, with somebody else that had something similar or something else that cancer, whatever it may be, how do you approach them without them feeling weird about it, and then trying to engage in how to address the very touchy subjects is really cool. Because then, you know, that makes them feel like they’re part of a solution too. And, you know, one of the things that I’ve taken away is I mean I’ve always been the best person, let’s be real.
It’s Okay To Offend PeopleKyle Johnson 34:37
So it’s one of those things where now it’s like, okay, I can help other people learn to have a basic conversation about a human. And that’s really, really neat to see is people wanting to understand how to have those conversations without, you know, the word offending or whatever.
Bill Gasiamis 35:07
I think offense is necessary. I think it’s okay to offend people. Because I’ll tell you why. Because if your intention is not to offend, and you’re offended, well, your intentions were really cool. So that’s all right, I’ve got no problem with people coming to me being afraid that they might offend me saying the wrong thing, and me getting offended.
Bill Gasiamis 35:28
Because I know most people actually aren’t attacking me specifically, because I’ve done something wrong to them, or they’re coming after me, what they’re doing is that they’re trying to navigate this situation, and they’re learning how to, and they have the unfortunate experience is that every survivor of something is always going to respond differently to every other survivor of something.
Bill Gasiamis 35:52
So they’re never going to get it right. And what they have to start with is, just ask a couple of questions, like, is this something you’d like to talk about? And if it’s not, that’s it, end it there. And if it is, well, what is there something that you prefer we didn’t discuss? And that, you know, and then that person might answer? Well, I’ll let you know when we get there, if we get there.
Bill Gasiamis 36:14
But what I’ve found is, although some people are in the, in the denial phase, and they’re still not ready to talk about it, really, they’re looking for the opportunity to talk about it to the right person in the right context. And, and they are, and they just don’t know who that’s going to be or who they can open up to.
Bill Gasiamis 36:35
That’s why I love counseling, because when you go to counseling, you’re paying that person, but also they’re creating a space where it’s safe for you to be able to talk about it and express it and perhaps start moving through the stages, so that you can start putting them behind you like, you know, the stages of grief, for example.
Bill Gasiamis 36:54
And denial, and, and anger and frustration and all that stuff. That’s kind of what I see, I’ve had people on this podcast, who hadn’t spoken to anyone heard about their stroke for 10 years, and thought that the first person on the planet that they should speak to about it was me.
Bill Gasiamis 37:40
Well, graduations for that.
Bill Gasiamis 37:17
Thank you. But like, I’m not sure why me but whatever, I’ll go with it. And then also 10 years, I’m sorry that you had to wait 10 years. But I’m glad you got there. So that’s cool. And what they did is they put on a perception to the rest of the world that there was nothing wrong, that everything was okay. And I’m like you I’m an open book, I can’t do that. I can’t pretend that something’s okay.
Bill Gasiamis 37:43
Because you see it all over my face that it’s not okay, my behavior, the way I speak and respond and talk. So what I’d rather do is when somebody says, Man, are you alright today, you’re not acting yourself, or you’re behaving inappropriately, or whatever, I’m like, I’m not alright, today, you know, and thanks for picking me up on it. And I’m sorry, I’m gonna have to apologize for my behavior. And, hopefully, I’ll be better tomorrow, but I might not be I might just be the same shit tomorrow that I was today. And I’m not intending on being that way. It just might be that.
Kyle Johnson 38:16
100% I mean, I think it’s, I don’t know if it’s harder to mask it now than it was like, when, you know, when I had a bad day before, it was like, Alright, I can put it behind and whatever it is. Now. The smallest thing can just make me irritated or whatever it may be. And I have these conversations all the time. Like, yeah, I just need a minute, I can’t fix it. It’s not something I can just snap out of.
Kyle Johnson 38:50
It’s something that I have to just deal with. And you know that I appreciate you bringing it to my attention and I will do my darndest to not continue to have that but because I don’t notice it. You know what I mean? Like, that’s just the way it is for me at this point. And those people that bring it up, it’s like, oh, man, you got a booger in your nose. You got something in your teeth.
Kyle Johnson 39:13
Well, thank you for telling me so I can fix the situation. But for this one I don’t know if it’s gonna get fixed at its same timely manner as picking something out of my face. So that goes with that gratitude of getting to getting those people on your side that are willing to tell you hey, you’re being kind of a jerk, or you’re being kind of a deck let’s let’s fix this. And you’re like, Well, I’m gonna do my best, bye. So yeah, those people are super helpful and in your life as well.
Bill Gasiamis 39:44
Yeah, it’s a two way street. You know, you got to take responsibility for when you’re being an idiot and not blame the stroke. Although it’s caused by the stroke. I don’t think you need to blame it forever in a day, it’s impossible to continuously blame an outsource the responsibility of your behavior on the stroke? It’s not it’s us. So it’s part of us now. And we’ve got to find the way through. And sometimes there doesn’t have to be a way through there just has to be a really good apology.
Kyle Johnson 40:14
Yeah, I mean, I think it’s just acknowledging that yeah, guess what? Your right. Perception is reality, and I’ve been a piece of crap today, I apologize, I will do my best to be better. But I own my actions. And, you know, I’m gonna try, that’s all I can say is I’m going to try. And I apologize, I’m not Yoda. Like, it’s got to be a try situation.
Bill Gasiamis 40:39
Yeah. And the thing about it is you’re gonna you’re living with a neurological condition, we do get irritated, a lot easier, light sound, too much sensory overload. And especially if you’ve got an eye condition like yourself, you’ve got nystagmus that is going to cause you know, a level of discomfort and irritation to your brain.
Bill Gasiamis 41:02
So you’re kind of already irritated without having gone into the public domain yet. And what that’s doing is, it seems like you’re short fused, or whatever, and it’s getting you over a small kind of get you over the line quickly. But it’s like, no, I’ve already had my irritations already today, like as many as I can handle.
Bill Gasiamis 41:25
And this was the straw that broke the camel’s back, for example. And it’s like, okay, I know you don’t get that because there’s no way you can get it. Because you have to be like me, and I don’t want you to be like me. But what I’m saying to you is just, you know, this is it, we’re different people, we appear the same, but we are very, very different people.
Kyle Johnson 41:47
I had a co-worker at one point that, you know, he broke his foot. And whenever anything happened, he’s like, Ah, he’d get really frustrated really quick. And this is after my, everything happened. And he looked at me, and he’s like, I never even thought about, like how all because like, I used to have really bad headaches all the time. And you know, just trying to push through some stuff.
Kyle Johnson 42:13
And you know, he would bump his toe on something he’s really frustrated. And one day, he did it. And I was just looking at him. And he’s like, I never even think about how you deal with stuff. I can’t imagine having, what you all have, what you’re dealing with all the time and then having an injury. I was like, well, it takes it up a lot. Like when you get hurt, or like you said anything, unfortunately, can become a trigger.
Kyle Johnson 42:41
It’s just how do you identify that and then try to mitigate it the best you possibly can to where, you know, people around me know, like, Hey, I just need a minute, I just need to go away and lay down for a minute in a calm, dark place and just get myself back.
Kyle Johnson 43:01
And, it’s that whole piece of like, I appreciate you people for understanding that this is going to happen, and it’s not a might, it is going to happen at some point in time. And if it does, I apologize. And I’ll apologize after too. So yeah, it’s it’s been a trip to say the least.
Self-Awareness After Multiple Hemorrhagic StrokesBill Gasiamis 43:24
Yeah, you know, but what’s been good about it, it sounds like to me, it sounds like that what’s good about it is you’ve become more self-aware. Your sounds like your self-awareness has just gone through the roof. And that can be positive. That’s only a positive surely.
Kyle Johnson 43:42
Before, people that are gonna watch this and know me, you know, I was, I apologize to all you out there that do know me ahead of this. And would agree with me on this when I was probably I knew myself very well, I was very confident in who I was as a person. Let’s be real, maybe a little overconfident and looking at everybody else out there.
Kyle Johnson 44:04
And what this has done is had to teach me to look inside more and really understand what I’m putting out is what I deserve back. And that’s a weird way to put it. But to your point, you do become more self aware to a certain extent because I know when I’m walking down a hallway or a street or something with my wife or my son that if I am wobbling, where my gait my walk is off.
Kyle Johnson 44:33
I know people are gonna watch me, right. So you become that self aware of like, what am I doing? How am I acting? Are people gonna think I’m weird? You know, whatever it may be. Or, you know, a lot of myself comes from humor, because as we all know, that’s the best way to deal with bad tragedies. So plenty of conversations with my wife and like, that wasn’t quite where it needed to go with the conversation, with dark humor.
Kyle Johnson 45:04
So it’s having to understand and get repeatedly corrected, to truly understand yourself a little bit more, that’s what I found for me is that I’d say these things, and I’d be corrected. And that would become something I’d be more mindful of. And I’ve had to build my own filters instead of naturally having them. Which is probably bad for me in the long run. Let’s be real. Because I’m not sure my filter system was great to start with.
Bill Gasiamis 45:32
Yeah, it sounds like it’s you by design this time instead of you by default?
Kyle Johnson 45:37
Absolutely. That’s a really fantastic way to put it actually. Before it was, you know, like, everybody could blame it on whatever you could say, like, I grew up that way. I’m just blunt, or whatever it is. Now it’s, it’s understanding that I need to understand what’s coming out my mouth, because I expect that to come back in a certain way. So it’s been a lot of learnings.
Kyle Johnson 46:04
And you are absolutely correct, that you become decided, I think it sounds like you did to becoming more self aware of what you’re saying what you’re physically doing, you know, all that kind of stuff. So it’s been a great learning experience.
Kyle Johnson 46:21
Probably getting on with it, at some point, let’s be real at the end of the day. But still, you know, it’s been interesting to have to relearn all those different types of things of who you are as well. And maybe things that you didn’t want to acknowledge about yourself as well.
Bill Gasiamis 46:42
You got no choice now.
Kyle Johnson 46:44
Exactly.
Bill Gasiamis 46:46
One thing about humor that I like about humor is if it triggers you, it’s worth exploring it, you know, that whole situation, dark humor, whatever. And I follow, obviously, a lot of stroke survivors. And one person commented about a show that they were at. And it was a comedy show, and the comedian made a joke about stroke.
Bill Gasiamis 47:11
And the response on that person’s social media profile was, you know, I went and saw this comedian, and he made a joke about stroke, stroke is no joke, you know, he’s an absolute disgrace, and all that kind of stuff. And that person got really offended that there was somebody on the other side of it, who made a joke about stroke. Now, I would have loved to have heard the joke about stroke, I reckon I would have found it funny and laughed.
Bill Gasiamis 47:38
But some people aren’t in that stage, where they’re able to have a laugh at themselves, or about their stroke, or whatever, and, are focusing on the negatives instead of the positives more often than not, and it is really serious. There’s no doubt about it. It’s really serious.
Bill Gasiamis 47:56
And so what I mean, the fact that it’s really serious, and it’s really hard, and it’s really terrible, and all that kind of shit. So what, like, and what are we going to do? Like, just get depressed because it is really serious? We may as well have a laugh about it, because it’s serious. To kind of turn it on its head and say, as serious as you think you are stroke? No, I’m gonna have a laugh about it.
Kyle Johnson 48:22
You got to own it. And like, I’ve actually a lot of people I know, like I make on it, maybe inappropriately, but I make jokes, a lot of like, hey, the strip stuff, and I’ve had people come up to me and be like, Hey, man, you shouldn’t talk like that. And I’m like, yo, I’m owning this one that I’m allowed to, to joke and laugh. Because if I don’t, other things are gonna come out that are gonna be worse.
Kyle Johnson 48:49
So I’m all for, you know, people that are able to bring a humor aside to the situation because as you said, it’s a shit situation. But to at least have something unique come out of it, even if it’s a joke, or even a bad one, whatever. But I just don’t want to understand the whole I like, okay, maybe when a third half that I’d be a little bit pissy, but I wouldn’t, you know, raise about it. It’s more of a, you know, now, I used to joke with my friends all the time.
Kyle Johnson 49:25
Like, oh, I remember when I was younger, this is actual saying I used to say was, you know, I hope I brought my helmet because my head my brain might explode. And then it did. And so, so now, it’s not like the funniest joke anymore, because it was a reality thing, but I still say it. Or, you know, I don’t know.
Kyle Johnson 49:45
It’s just one of those things where if you can’t laugh at yourself and the things that are going on around you, then I think you kind of needs to reevaluate, because one, you’re still here. And that is huge. Right? You may have deficits you may have whatever it is, but at the end of the day, just, we gotta be happy with it. And some things might offend you, I get it. But at the same time, it’s a joke. That’s a whole other comedy conversation, I guess.
Stroke HumorBill Gasiamis 50:16
It’s a huge conversation, but it’s a really important one. I’m not particularly qualified to have it. But I know just from my perspective, the thing about it is, with my mates, I was kind of the clumsy kind of guy. And I end up finding myself falling over often. And, of course, they would laugh at me.
Bill Gasiamis 50:45
And just because I had a brain surgery, and had to learn how to walk again, if they were with me in my house, when I fell over, they would laugh at me. Just because it was as a result of the the stroke or my clumsiness. I would like to think that, even though it hurt, and I got injured, you know, bruised, battered, like not kind of broken or anything. I would like to think that they would still laugh at me.
Kyle Johnson 51:18
Yeah, it’s not malicious.
Bill Gasiamis 51:21
It’s their instincts. It’s their response.
Kyle Johnson 51:24
People falling, it’s funny. I’m sorry, it is. I mean so I have a pair of pants that I will never get rid of, that are like these. It’s like a weird, almost like a jogger material. Not like a fleece or something like really slick almost. And I remember one day after PT, I was sleeping and my father in law was at the house. And I was wearing these pants, and I want to get up, and I swung my leg over the bed.
Kyle Johnson 51:54
And I slid off the bed, and straight into the nightstand and hit my head. It was the first time I’d fallen since I got out of the hospital. And he here’s a huge dud, because, you know, I’m an adult male, and I’m laying on the floor, and you might as well just paint a chalk outline around me. And he’s like, Dude, are you okay? And I was like, I had no idea what just happened.
Kyle Johnson 52:19
And I was like, I seriously think my pants just slipped me out of bed. And we just started laughing, because what are you going to do? And then I told my PT, my physical therapist, that I fell in what happened? Because she was like, you know, as you know, they ask you all the time, like, and he falls in a whatever. And I was like, Yeah, I fell out of bed. And we kind of go over sort of laughing. She’s like, How in the hell do you fall out of bed like that? I was like, I don’t know.
Kyle Johnson 52:47
But I’m never wearing these pants again. I’m like, 1% sure they’re haunted. And it was a joke. It just turned into something that became relatable to her too. And that’s, that’s the piece that I think a lot of these people don’t understand is these jokes come from a place to where I know that unit makes me feel more normal.
Kyle Johnson 53:09
Because when they’re making fun of everything else, but I’m the one left out group, like Yeah, no, I, I want to be brought into the fold. I made dumb decisions, and I did dumb stuff. Yeah. So I don’t know, I think it’s a way to, to relate to a person and in order to make people feel more comfortable and to be involved, you know, to acknowledge that that actually happened.
Kyle Johnson 53:40
And there’s a comedian. He has cerebral palsy, I think it is. And he talks about how he’s disabled. And my gosh, I think it was like America’s Got Talent or something. He was talking to Simon he’s like, we’re the only minority group that you can join at any point in time. You’re just one bad bicycle ride away from joining our side. And when I heard that, I just started laughing they know people that got mad at the joke and I’m like, one ah, nope, you cannot say that like, Are you kidding?
Kyle Johnson 54:15
I guess but like you can’t be offended by something that literally has no impact on you at all. besides making you laugh on the inside because you know that was funny. And that’s the case it’s you know, it’s the people that want to protect you are protect others from that kind of stuff, but at the same time, like, I don’t need protection. I know what salami I know what I find funny, I don’t like it. I’m gonna turn off. And I maybe this is that dark humor, please.
Bill Gasiamis 54:45
I love it. I love it. Because you just reminded me of a comedian that we used to have here. He was popular in the 90s his an Australian guy his real name was Christopher Widows and his stage name is Steady Eddie. And he has cerebral palsy.
Bill Gasiamis 55:06
Okay, and the guy’s not steady. It’s, a sick aussie humor thing that we do when somebody is short we call them stretch or tall when somebody is tall we call them small. So Steady Eddie was on stage breaking down those types of barriers in the 90s. And he was just tape hanging it on himself the entire time, he was talking about things like dating about driving about public transport, you name it, he was talking about everything. And we, because we didn’t, because I was a lot younger in the 90s.
Bill Gasiamis 55:42
And I didn’t have a filter of how people might get hurt or offended or whatever. I just took this guy, at his word, whatever he told me coming from his perspective of the world. To me, it was absolutely hilarious. And I know, some people might have got upset with him or whatever. But I thought he was amazing. And he was the only disabled person, whether they were on TV or movies or wherever that I had ever seen.
Bill Gasiamis 56:11
Being himself on stage in front of sold-out crowd saw that shows. So it’s like, how can we take that away from this guy? How can we decide what is or isn’t funny? And how can we not allow him to express himself in a way that helps him get through all the stuff that he’s got to get through? Every single day of his entire life from the day he was born.
Bill Gasiamis 56:38
He’s had to break down so many barriers to overcome the condition his you know, his his upbringing sounds like it was amazing. But his physical abilities were not even with the majority of the people. So he had to work harder, much, much harder to get to that point where he was actually being his authentic self and living his life.
Bill Gasiamis 57:04
So I’m not going to take away his dark, sick jokes about cerebral palsy, not in a million years. I love that. So that’s kind of the way I see it, you know, I think everything is potentially open for a little bit of, like, everything’s open for criticism. Everything’s open for comedy, I think.
Kyle Johnson – Life Before The StrokeBill Gasiamis 57:31
It’s lovely to have a conversation with you, and go so deeply into the conversation. I love it. So just to move along a little bit, because I want to get to know a bit about you. What were you doing before all of this stuff? And how are you going about life under “normal” conditions?
Kyle Johnson 57:51
It was, you know, I picturesque would be a good word for it. You know, my wife and I, we’ve been together since high school type of situation. And we had moved out to Minnesota for work. And we were there for a couple of years. And the company, we both worked for the same company. And they went through some layoffs. So I was part of it, went to another company, and just things were not going well with the company itself.
Kyle Johnson 58:27
So I voluntarily left I was doing my own thing. And we’re working out we’re doing the right stuff for our bodies, and we’re just being 30 year olds, you know, we had a kid and we were trying to raise on the best serve ability. And, you know, to your point, we had a few things that had gone wrong in our lives that we both struggled with at one point.
Kyle Johnson 58:47
But, you know, it wasn’t like anything absolutely insane, you know, that we’d had to deal with. And, you know, when all this started happening was really, I look back at it, I’m like, I also see that, like, my wife had to go to Portland or something for work.
Kyle Johnson 59:09
So I was home alone with our son. And we’re working out a lot, like I said, and we are on our D load week where we lower weights just to do that kind of stuff. And I remember, you know, used to throw in the air like every dad loves to do is throw their kid and make their wife freak out. So I was doing that and I realized I couldn’t get my hands up. And I just like, Well, I gotta tensioner my back. I don’t know, whatever because nothing else is really wrong.
Kyle Johnson 59:37
And then she left and you know, just kind of perpetuated and then which just kind of continued on. And I remember waking up that Monday to take him to school. And I could only see like, you know, 20 feet in front of me without it being crossed and I was like us. It’s weird. I must have just slept wrong. I don’t know. So I took him to school came back and you know, or daycare or whatever it was that I picked up later.
Kyle Johnson 1:00:10
And the next day it was like I could only see like, two feet or three feet. I’m like, What is going on? And I thought I literally put an eyepatch on from his Halloween collection, and joven School. And on the way back, I called my wife and I was like, Hey, I’m not feeling real good. You know, I feel like my face is numb. noises are freaking me out. Like, I can’t hear bass. Like it just couldn’t understand certain things.
Kyle Johnson 1:00:36
So she called, her company had a nurse line. And they’re like, hey, the things you described haven’t call us right now. So she called me back. And she’s like, Hey, they want you to call her I was like, Come on, man. So I pulled into the gas station, still got my patch on. I’m pumping gas, and I’m talking to the lady, I’m starting to slur. And it was one of those things where she’s like, get off the phone. Get to the hospital right now. And I was like, whatever, I’m home alone, who’s gonna feed the dogs, right.
Kyle Johnson 1:01:09
So for this, let me guess, go home, feed the dogs. And at that point, I realized that like it couldn’t really see very well. And my right side was doing not like it was just a lot of things just like something might be wrong. So luckily, there there was not that far from where we lived at the time. And I remember parking, stumbling into the hospital. And then like falling in the admissions chair.
Kyle Johnson 1:01:41
And lady just looked at me and I couldn’t understand her. I couldn’t do anything. She was looking at me. She’s like, we’re going back when I got a wheelchair that didn’t MRI. And by the time I came out of the MRI couldn’t talk, couldn’t see nothing. But my wife knew that I was going to hospital. So I just handed the doctor my phone. And she called my wife.
Kyle Johnson 1:02:05
My wife is expecting me on the other end. And so Doctor being like, well, he doesn’t have anything, but he’s having a stroke right now. And he’s bleeding in his brain, and we don’t know what’s gonna happen and all this stuff. So that was interesting, you know, kind of knocked it out for a while. We were just kids. I know, this is weird to say but like going to concerts going to plays doing normal family stuff. And now it’s been a challenge.
Kyle Johnson 1:02:39
You know, we used to love going to, like Minnesota future concerts for music and stuff like that. And we’ve tried to go to concerts all the time. And now like, I have to wear headphones. If it’s too loud, like, you know, I’m an old person. I’m like, God, it’s too loud. I can’t do this. So it’s the overload. You know, I don’t like being around a ton of people around me all the time. It’s just, you know, little things you learn. And now I work from home. So this is literally my office in my bedroom. So this works out perfect for me.
The Perpetual PirateBill Gasiamis 1:03:17
Yeah, I hear you. Perpetual Pirate is your Instagram name. And can you tell us why you’re the Perpetual Pirate? Because for people that are watching on YouTube, they’re listening to this. Why are you the perpetual pirate?
Kyle Johnson 1:03:39
when I first started my Instagram account, it was no I like everyone. It was just like, whatever type of social media account and after my first stroke, I love cars. I mean, you probably seen some of them. I love cars. I love Chinese. I took a little hiatus this driving was a little bit challenging to get back to but I loved it. And when my when my I refused to turn back to being normal.
Kyle Johnson 1:04:10
I wear an eyepatch everywhere I drive. And I was like, You know what, I’m gonna own this. This is me. I am the perpetual pirate. I’m never getting rid of this eyepatch. I’m in this forever as they would say on the Instagram taglines and reels and all that stuff. And it just is something I got to own right.
Kyle Johnson 1:04:31
You own what’s happening around you. And that’s one of those things where I’m taking it back. It’s mine. I’m owning it and if somebody asks, absolutely, let’s talk about it. So gives you Yeah, exactly. I’m not gonna let it on me. I’m voting on it. It may take me down at some point but the whole time I’m gonna fight. So yeah, that’s just where it comes from. It’s just more of a little poke at it.
Bill Gasiamis 1:05:00
A lot of people struggle when they look in the mirror and see the way that their face has changed. And I’m looking at the photo on your Instagram, the profile photo, it’s you and your wife and your baby. Yep. And, you know, there’s an obvious change between that photo and now. Yeah, how did you come to terms with that? Have you come to terms with it? What’s it like when you look in the mirror?
Kyle Johnson 1:05:32
I hate it. So, I mean, just to boil it down to that I absolutely hate looking at the mirror, still, I mean, I’ve gotten past all the anger and all the jazz but at the same time. So like, even at work, right? Like, I have my reading glasses that are reflective. So that way, when I put them on, you can only see the screen through my eyes. So people don’t really tell them eyes are weird, or differ, I should say.
Kyle Johnson 1:06:05
So I am not a superfan looking at myself in the mirror. Although, you know, I tell my wife that, you know, she’s got a good blessing, because half my face is going to be wrinkle free when we’re like 80. So I’m going to be looking like a new baby, right? The at the end of the day, I don’t like looking at my face.
Kyle Johnson 1:06:24
And people are like, Oh, I don’t understand why I’m like, Well, it’s hard to explain. I know what I know what I want to look like, I know what I used to look like, but it’s never coming back. So, you know, as long as my teeth are clean, and my nose is clean, you know? And was once in a while I don’t know. It’s just not something I walk into the mirror I’m like, aroused you this type of situation.
Kyle Johnson 1:06:51
So I’d say that’s probably one of the biggest lingering effects is, you know, I would say my eyeline tends to naturally just go down when I’m in front of the mirror versus looking straight at myself. That’s a really good question, actually. Because you’re absolutely right, there are certain things that I keep that photo, and actually it’s right back here, right there.
Kyle Johnson 1:07:20
And that’s one of my favorite photos. That was when we were working out a lot. We just had Ryan, things are going well. And then you know, 18 months later, whatever it was, just kind of took it out. So that’s one of my favorite family photos of that is when I can look back at it and be like, I love that time period. Just sort of one, you know, you’re in shape. You know, just happy memories from that point.
Bill Gasiamis 1:07:53
Oblivious to the real world, arent you? You’re still kind of really oblivious all the problems that you’re living with, you probably created in your own head up until they actually occurred. And then it’s like, okay, these are a completely different set of problems that I’m not prepared for.
Bill Gasiamis 1:08:09
And I didn’t know, were part of my life. For sure. So do you feel like there will be a time where you’ll have fond memories, just like the ones that you describe from that time? Do you feel like you’ve made some of those now, in this new stage?
Kyle Johnson 1:08:31
Oh, absolutely. I mean, you’ve probably experienced this and if you haven’t, please tell me you haven’t. But there has been muster with this part. And then it kind of leads into it, which there’s been a shift in relationships, from friends, family, whatever it is to what it was, to what it is now. You know, the people that if somebody is watching this, you’re going to watch it, I apologize if this hurts your feelings, but at the same time, it is what it is, right?
Kyle Johnson 1:09:03
Where it’s, you know, the people that are like, Oh, I can be there, whatever you need help with, just let me know. And then you ask them, and they’re just like, Oh, I’m cleaning my eyebrows, that day, like, cool. So that piece is something to kind of think about as the relationship pieces that are moving forward to where those are the happy memories that are focused on right is meeting the new people that I become friendly with.
Kyle Johnson 1:09:29
And, you know, I can be myself at this stage, where it’s not they remember me from what I was, and all the things I was able to do and I could do at that point in time. But these are people that know me now. These are people that understand what I’m capable of now and appreciate that. And those are the memories that I remember of joking around and having a great time and watching our kids play and all the little things that you would do normally.
Kyle Johnson 1:09:58
But they only know me as this sort of allows them to not have those biases, preconceived notions of like Kyle used to be able to do that, or he used to maybe say this instead. But now they know me as this. And that’s how I’m accepted as this. And that. That is those that that’s the building blocks of the memories for me is knowing that people that accept me for who I am, and will actually be there and have fun.
Kyle Johnson 1:10:29
Like you said earlier, I have plenty of people that we took around all the time, about my face not working or my eyes being silly, or whatever it may be, because it’s funny. And a lot of young people I do guess wouldn’t necessarily have those kind of jokes, or the people that knew me at this stage, fair game man.
Kyle Johnson 1:10:51
And it’s okay. So lucky looking back, it’s looking at those memories that mean more to me, than a lot of the older ones that people I don’t talk to anymore, or relationships that may not be there anymore, either. So, like you said, it’s almost like remembering the memories to overtake the old ones, in a way.
Falling Out?Bill Gasiamis 1:11:19
So you know, the previous people who were kind of in your life, and now they’re out, for whatever reason, you think about it, like they’ve gone through a trauma too, they’ve gone through the trauma of seeing their friend, who was well looked like this, who was unwell, looks like that. And they’re grappling with their own mortality because of your potential mortality.
Bill Gasiamis 1:11:41
And they’re grappling with the identities change that they’ve had, just by seeing that how your identity has shifted, they used to relate to you in this way, and they don’t know or they’re not capable of expanding the way that they relate to people beyond say, going to the football or going to the pub, or whatever it was. And then it’s like, what do I do now? And yeah, I want to help the guy because he’s a great guy and he’s worth helping.
Bill Gasiamis 1:12:09
But when he asks, I hope he never asks, because when he asks, that’s going to be a really difficult time for me, because I’m not going to feel comfortable being there, because I’m not well enough, or I’m not strong enough, or I don’t have the capacity to support him emotionally, or in these other ways. Yeah I can lift a box and move it and I can push it, you know, push a chair or, you know, pick up a bed and relocate it or whatever.
Bill Gasiamis 1:12:38
But I don’t have the emotional capacity to be around that guy. Because he’s evolved. And I’m not evolved to that extent yet. I’m still the guy who’s appears like an adult, appears like, he has some life experience, but really is 35 36 37 and hasn’t really had any life experience because everything’s been picture perfect so far.
Bill Gasiamis 1:13:05
And they’ve only ever lived with the perception of problems that they created in their head, because they didn’t have any problems. And they probably felt left out and they thought they should have some. So they went about creating some. Do you know what I mean?
Kyle Johnson 1:13:17
100% And I think that’s the other piece that comes with all this learning is that one of the things I’ve had to do, and I did this a lot when all this stuff first happened. And it took me a little bit to realize I was being a total dick while doing it, which is comparative, or be comparing.
Kyle Johnson 1:13:41
Because at the end of the day, the stuff I went through sucks. And you know, I think for you, me and people that have gone through this, it’s easy to do that one up, or you’re like, Well, you had what I had for, but I don’t know what to tell you. I got to tell you, though, to where it’s like I had to learn and understand that. That what people are going through that is their own stuff.
Kyle Johnson 1:14:06
And that may be the worst thing that’s happened to them. And you know what, I’m happy that that is the worst thing that has happened to them. And that is what’s thrown you through a loop is you stepped on a Lego, and you think you’re dying, man, express yourself, do what you need to do. I’m not comparing anymore. I’m not. I mean, yes, do I get judgy let’s be real, I’m human.
Kyle Johnson 1:14:32
But at the end of the day, it’s your experiences and what you’re going through on your own and I wish you the absolute best getting through it. And you know, being that I have gone through some of these things. If you need help, let me know I don’t know what I can’t lift boxes for you or move the bed.
Kyle Johnson 1:14:53
But I could help you do something else maybe. So, yeah, it’s that honest In case of like, yeah, I may have gone through some shit. But whatever you’re going through is most important to you. And I have to I don’t have the words appreciate, but understand it, I guess be the the bit, the better word for it is at least understand that what you’re going through means more to you than what might mean to somebody else.
Bill Gasiamis 1:15:24
Yeah, absolutely. That’s a really wise way to say it. Because what that does is it doesn’t make hopefully, the other person feel guilty. And you’re not doing that what you’re doing this guy, Hey, you do you all do me. And if if we come to cross paths, again, we cross paths again, and we’ll work it out. Then I had a friend of mine who I was really tight with for many years.
Bill Gasiamis 1:15:48
And then when he got married, you know, and I was married, you know, we kind of continued on and we did all that stuff. And then, and then he got divorced. And then we never heard from him again. And we didn’t hear from him again for a long time.
Bill Gasiamis 1:16:03
And I hear that a lot because people don’t know how to relate to you without their partner at a family gathering or a function or whatever. And it’s like, okay, I appreciate that to an extent. And then he found out that I was unwell. But he still didn’t make it contact, they still didn’t reach out or anything like that. And then we ran into each other at a local venue one time.
Bill Gasiamis 1:16:30
And then he said to me, man, I’m sorry, I haven’t called and all that kind of stuff. And I’m like, Whatever, man, you need to apologize for it, you know, I know you’re really unwell and sick it’s all good. Don’t worry about it, you know, no big deal. And then, to me, it just felt like, even if we kind of rekindled our friendship or tried to do something for him, it still would have been uncomfortable and bad.
Bill Gasiamis 1:16:56
And I think it’s nicer to just let him go. So that he’s not perpetually feeling uncomfortable and bad about what he has or hasn’t done or how he has or hasn’t behaved. I forgive you, I don’t really mind I’m not holding a grudge, but also don’t have the desire to hang around and be with you while you’re going through that phase.
Bill Gasiamis 1:17:18
Because I’m done with that phase. Like, I don’t have that. So I’ll just do may you could do to you. And I’ll always say hello to you if I sit on the street and chat to you and find out how you’re going and all that sort of stuff. But I just don’t really feel like we’re at the same place to hang out together and spend time. So it’s all good.
Kyle Johnson 1:17:38
But you know what, that’s okay. And the people that say it’s not have never had a falling out, let’s be real. I mean, you hear these things all the time, like, oh, we just grew apart or whatever it is, yeah, people grow apart, it just happens to be that you and I had something that snapped us apart. And it that’s just the way the world works. And you’re absolutely right, to the point where now, this is me being selfish, and I’ll admit this all day long. But I don’t have or want to have the energy to put forth on something like that.
Kyle Johnson 1:18:21
Like my wife and I are the same. Like, it’s something I don’t want to see we make snap judgments. But we evaluate situation and we’re like, you know what, I do not have the emotional capacity to deal with whatever you are going through, I apologize, I will be here on whatever you need. But at the same time, you know, I had to own my own shit. Like, let’s step in. And if we need to get through it, let’s get through it. But at the same time, like, I just don’t have the emotional capacity I used to have to spend on that.
Kyle Johnson 1:18:59
And like, to me, it’s, I deeply apologize, and I’ll be there to help you. But at the same time, I want to go hang out with my son, I want to go take him somewhere do mini golf or play video games or something. And, you know, no offense, but I want to do that. I mean, I’d love to help you but at the same time, jog on. And that’s harsh. And I get it. That’s also me being so selfish, to protect my own self from getting wrapped up there involved in the next level, whatever.
Kyle Johnson 1:18:59
Yeah, and you’re prioritizing your time, which is amazing, because we don’t do that right? We often don’t do that. And now you’re going hang on a sec. Let me say what I value more I value that more, that’s going to bring me more joy, more happiness, it’s going to be better for my long term, well being it’s going to do better for what I’m trying to put out in the world or how I’m trying to raise my son, all that kind of stuff.
Bill Gasiamis 1:19:54
And it’s like, Well, okay, I know what my values are. That’s where I need to put my energy because that’s Ultimately, why I was put on the planet why I decided to have kids. The rest of it is up to you to your journey, you work that out. And you will, you’ll get through, you’ll find a way. There’s no doubt about if you keep searching for answers, you’ll get answers. If you keep looking for problems, you’ll get problems. So it’s so good.
Kyle Johnson 1:20:20
Yeah, I mean, I apologize. I don’t remember his name. But one of the what are your other podcasts, there’s a guy that started with he loves the American saying, if you’re an asshole, you’re gonna keep finding problems, or something like that. And I love that line. Because it’s so true. And you can extrapolate it to so many different types of scenarios, where, you know, it’s cliche, like, oh, put the positive out in the world, and, you know, you can manifest that’s it, well, I can’t manifest a brainstem.
Kyle Johnson 1:20:55
I can want to do all these things, and put all these positives in the world. But at the end of the day, my actions have consequences and my actions that I get to send with my son, and I get to teach him to be the right person, or perceivably, the right person, or you know, all those different things is, you know, communication is key, as long as it leads to action, as far as I’m concerned, because we could talk about all this stuff all day long.
Kyle Johnson 1:21:20
But if you don’t go out in the world, and make it a better place on your own, or if you don’t do all these things on your own. Again, what are you doing man? Let’s step it and let’s do this, and you’re doing a podcast where people can truly understand and express and you give them the platform to do these things.
Kyle Johnson 1:21:36
And have people listen, and maybe learn a little bit about what you’ve gone through from a caretaker perspective, or, you know, from an actual survivor, whatever it may be, I think that’s an absolutely beautiful thing to do. And it sheds light on something where, you know, not every stroke survivor is 65 or 70. You know, it’s, it can happen to anybody.
Bill Gasiamis 1:22:04
And 70-year-olds are going through the same thing we’re going through and the 83-year-olds, they’re all going through the same thing. The guy who you mentioned was Rodrigo Sanmar. He’s a Mexican film maker. And he was episode 207. And he was such a cool dude to speak to. And if anyone is curious about that line, what it is, as soon as you go and listen to the podcast, it’s literally the first minute I’ve clipped it and put it at the beginning.
Bill Gasiamis 1:22:36
Because it’s such a good line. And yeah, it’s true, that’s kind of you get what you focus on is basically what he’s saying. But he has a beautiful way of expressing that I had a really good time chatting with Rodrigo. And he’s like you, he’s physically and spiritually, spiritually and emotionally altered from this, and he is making the best of it. And he’s doing amazing things in Mexico, as well as filming, doing, you know, documentaries, and all the stuff that he used to do.
Bill Gasiamis 1:23:09
He’s also building some amazing, sustainable home and all this kind of stuff in a really economical, very eco friendly, and it’s like, wow, you go man. And all this sort of started after the stroke for him. And it’s like, what an amazing thing. I’m not sure I didn’t ask you if it would have been the case anyway. But it seems to be his new passion project. You know, he’s going all out trying to get this thing off the ground.
Bill Gasiamis 1:23:37
And I think they’re going to be building hundreds of homes for people with this different idea. So, yeah, that’s Rodrigo. I’ve really enjoyed chatting with you, man. I like your philosophy. I love the way you’re going about your recovery. And I really appreciate you reaching out and connecting with me and asking to be on the podcast. I love it when people contact me to be on the show. It makes me feel like it’s better than dragging people along to the show. You know what I mean?
Kyle Johnson 1:24:09
No, absolutely. And that’s why I said earlier, just like I really appreciate the platform to allow people to do this and allow people to express different facets that I think you said earlier, if you haven’t gone through this, the thought process of the random things don’t come into play with the normal person. The normie as you know, cool kids these days a Handi capable.
Kyle Johnson 1:24:37
But you know, I think that you doing this alone and allowing people to express themselves, which is hard. Let’s be real. It’s not easy to come out here and to share your story all the time. But it is wonderful for people to hear the emotion that comes out of it in my story is not the same as anybody else’s. But I’m not saying it’s worse. I’m not saying it’s better. It’s just an experience of the human collective that people need to hear, or if they want to totally up to them. So yeah, no, I appreciate you having me on. And I appreciate the time very much.
The Recovery After Stroke PodcastBill Gasiamis 1:25:18
You’re welcome. And that thing about the podcast is I’ve done it for my family to hear. They don’t listen. But I’ve done it. Because what I’m thinking is, if they choose to listen, instead of me telling them, which is something I used to do a lot. They can come themselves, instead of taking the merhaba to the mountain, or what is it moving mountain or something like that.
Bill Gasiamis 1:25:19
There’s a saying there about, you know, like, not pushing it onto people. It’s just about creating the space for it. And then if people want to come, they’ll come when they’re ready, you know, and I’m really good with that. Really good with that. I have no problem with that plenty of people are coming, you know, this month, we’re on track to get 6000 downloads of the podcast.
Bill Gasiamis 1:26:07
Oh, wow. Yeah, that’s never happened before. So I’m pretty excited that we’re going to probably crack the 6000 downloads for the podcast, which means that, perhaps is not 6000 people listening simultaneously. But there’s more than 210 episodes now. And then there’s a whole bunch of content that I can go to. So wherever stroke survivors are in their journey, wherever they are on their journey, they’ll be able to relate to different people throughout the podcast, I want to make it the biggest podcast for the number of stroke survivors that have been interviewed in one place ever.
Bill Gasiamis 1:26:51
That’s kind of my goal now. So there is, unfortunately, too many of us, or one in four people are going to have a stroke in their lifetime. And if you think about the size of the population of the planet, where there’s something like 7 billion of us, that’s more than a billion people, at least, are going to have, you know, nearly 2 billion people are going to have a stroke in their lifetime.
Bill Gasiamis 1:27:17
So and when I was going through this, there was nothing, I couldn’t go anywhere to get information, there was some amazing communities locally that were doing good things, but there wasn’t enough the way that I like to consume. You know, this type of content about stroke, it was, this to me can be very passive. Because if I’m, if I’m driving up on an episode on or if I’m in the train, I can put an episode on.
Bill Gasiamis 1:27:44
And I can just pull on on in the background, if nobody’s home, and I’m not bothering anybody, I can just listen. So that’s kind of the beauty of it, you know, it can be real passive. And how lucky am I to speak to 210 or more stroke survivors, and tell me their version of it just so I can become better about myself and feel better about myself at the same time? I mean, it’s such a gift and a blessing and everything either way, you know, and I know it goes both ways, everyone thanks me.
Bill Gasiamis 1:28:16
And it’s like, you’re the same, like, I feel the same for you. This just may as well have been the first episode, it doesn’t make a difference to me, it’s so amazing. I don’t know how much you have to talk about your stroke. But I haven’t got enough about it yet. I’m turning 10 episodes in and I still haven’t stopped speaking about it, I still feel the need to continue speaking about it.
Bill Gasiamis 1:28:39
So this is more of a gift because of the other people that are helping me. So that’s not more of a gift. It’s just as much of a gift to me, you know. So thank you, and be well and have an amazing recovery. And enjoy the rest of, you know, the next chapter of your life.
Kyle Johnson 1:29:04
I appreciate that. And anybody who’s listening out there is more than welcome to reach out to the person around them and make sure that they’re doing okay, I think that’s one of the pieces we talked about earlier is just making sure that you know the person next to you. So if anything does come up, you can make that decision, that quick decision that could possibly save a life.
Kyle Johnson 1:29:27
Because that’s where it all just starts is having those human contexts where you know each other well enough to understand something’s right or wrong. So no, I appreciate it. Thank you very much. And, you know, have a wonderful night and obviously, I’ll be listening to the next ones, the next one after that. So thank you very much.
Bill Gasiamis 1:29:47
Thanks for being on the podcast. That’s a wrap. What a cool chat man oh my God.
Kyle Johnson 1:29:54
I appreciate it.
Bill Gasiamis 1:29:55
What a really cool deep chat. I really appreciate it too. Thanks for watching. Hang on, it’s just a lot of fun being here all the way in Australia and having a chat to somebody from the other side of the planet who I felt like I’ve known for ages. Who I’ve just met and know nothing else about, you know, it’s unreal.
Kyle Johnson 1:30:15
Yeah, no, I said before I said on that is like, I know, it’s not just me, I know, you’re getting stuff out of it, too. But at the same time, you know, I think that I’ve been able to talk about it. And maybe express on like, little micro doses here and there. And recently, at that the company I work at, I did like a whole presentation to like 60 or 70 people about, it wasn’t necessarily directly about me, but it was about my experiences and how it can be translated to what we talked about the very end is knowing the people around you.
Kyle Johnson 1:31:03
And knowing if something is wrong, you can make that quick decision. And it’s just awesome to be able to, like you said, have these conversations to people around the world at this point in time. And it’s beautiful to have these shared experiences or shitty experiences. Don’t get me wrong, but to have that network of shared experiences is a beautiful thing.
Kyle Johnson 1:31:29
And I agree with you. There is not a lot out there for us to research. There’s not a lot out there to listen to. I mean, there’s people on Instagram, there’s, you know, things like that. But to your point that, like, I remember just researching and finding nothing. And asking doctors and they’re like, I don’t know, yeah, go to a PT. Okay, cool. Thanks. So no, this is wonderful. I appreciate it very much. And yeah, that’s the easiest way I can put it.
Bill Gasiamis 1:32:05
Thanks for joining us on today’s episode, sharing the show with family and friends on social media will make it possible for people like you who may need this type of content to find it easier. And that may make a massive difference to someone that is on the road to recovery after their own experience with stroke. Also, if you are stroke survivor with a story to share about your experience, come and join me on the show.
Bill Gasiamis 1:32:28
The interviews are not scripted, you did not have to plan for them. All you need to do to qualify is be a stroke survivor. Care for somebody who is a stroke survivor or be one of the fabulous people that help out stroke survivors. Just go to recovery after stroke.com/contact fill out the contact form and as soon as I receive your request, I will respond with more details on how you can choose a time that works for you and me to meet over zoom. Thanks again for being here and listening. I really appreciate you and see you on the next episode.
Intro 1:33:04
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals their opinions and treatment protocols discussed during any podcast or the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.
Intro 1:33:21
All content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis. The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.
Intro 1:33:44
The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional your doctor or your rehabilitation program based on our content.
Intro 1:34:06
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Intro 1:34:25
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The post Overcoming Multiple Hemorrhagic Strokes & Brain Surgery – Kyle Johnson appeared first on Recovery After Stroke.
Georgie Hennah experienced a thunderclap headache and stroke due to an Arteriovenous malformation that ruptured when she was 22 years of age.
Highlights:
02:26 Introduction
03:33 Thunderclap Headache And Stroke
09:01 Possible Symptoms
19:18 Recovery Support
27:09 Independent At 15
34:21 Accepting The New You
43:28 Stroke Closes And Opens Doors
56:06 Improvise, Adapt, And Overcome
1:05:26 You’re Not Alone
Transcription:
Georgie Hennah 0:00
On a smaller scale in relation to like my relationship with exercise. So I was, as I mentioned, like super sporty and into my fitness pre-bleed. And I think in the beginning I unfollowed I mean, I came off Instagram for months whilst I was just, you know, focusing on myself, but when I redownloaded it, I muted everyone that posted that they were going to the gym I unfollowed like so many fitness accounts because I was so envious, that I couldn’t move my body in the way that “normal” people could.
Intro 0:40
This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.
Bill Gasiamis 0:53
Hello, and welcome to episode 227 of the recovery after stroke podcast. To learn more about my guests, including links to their social media and other pages. And to download a full transcript of the entire interview, please go to recoveryafterstroke.com. If you would like to support this podcast, the best way to do that is leave a five-star review and a few words about what the show means to you on iTunes, and Spotify.
Bill Gasiamis 1:19
If you’re watching on YouTube, comment below the video like this episode and to get notifications of future episodes, subscribe to the show and hit the notifications Bell. Now if you do leave a five-star review that’s going to increase the ranking of the show on the search engines. And that’s going to make it easier for other stroke survivors to find the show.
Bill Gasiamis 1:42
And that’s going to help them overcome some of the challenges that they’re going through, especially if they are earlier on in the recovery compared to where you might be. And if you remember how good it was for you to come across this podcast and find it and the relief that you felt and the ability to get some answers to your questions that it managed to cause for you.
Bill Gasiamis 2:11
Then that’s exactly what other people are going to feel and this podcast is about making it easier for other people to recover from stroke, not feel so alone. I would really appreciate it if you did leave me a review, hopefully a five-star review.
Introduction – Georgie HennahBill Gasiamis 2:26And also if you share the podcast and let people know about it. Now my guest today is Georgie Hennah, who experienced a thunderclap headache and a stroke due to a ruptured AVM age 22. She has had to learn how to walk again and has a great approach to living with deficits that you must hear. Georgie Hennah, welcome to the podcast.
Georgie Hennah 2:49
Thank you for having me.
Bill Gasiamis 2:52
My pleasure. Thanks for being here. Tell me a little bit about what happened to you.
Georgie Hennah 2:56
So, for context, I’m 25 years old, I live in London. But in May 2020 when I was 22 I completely out of the blue had a brain hemorrhage which was caused by a ruptured AVM I had no idea that the AVM was there. This all came out, you know, they kind of suspected it but it took about 24 hours to actually realize that it was due to an AVM because the variety of scans I’m sure you know you’ve done lots of podcasts and I’m not sure what your cause of stroke was.
Thunderclap Headache And StrokeGeorgie Hennah 3:33But with the AVMs the bleed shows up on CT scan and things but I’ve had to have an angiogram which is shot the blood vessels which then showed the AVM so anyway, completely out of the blue. It was my sister’s birthday, it was during the height of the pandemic and it was towards the end of the day and I was just going to bed and then out of nowhere just had like this massive what I soon discovered to be called a thunderclap headache.
Georgie Hennah 3:55
And quickly wanted to rush out of bed to be sick. But then as I went to get out of bed, my left side was gone. This all is like a bit of a blur. Like I was conscious throughout the whole thing, but obviously I had absolutely no idea what was happening. And I had had a few drinks in the daytime I was pretty much sober when I went to bed.
Georgie Hennah 4:29
But I think because I’ve been drinking in the day I kind of was like, Oh, am I all of a sudden really drunk again? Like it was very, in a way I actually think that was a blessing because I think that kind of softened the whole blow of it. I think I was more like, oh my god, I’m just really drunk all of a sudden.
Georgie Hennah 4:47
Anyway, my boyfriend was with me. He knew that that wasn’t the case. And I mean I was being sick everywhere and yeah, like said my left side had gone. I was like a rag doll basically. And my mum came rushing in. And within about 20 minutes the ambulance arrived. And yeah, went off to my local hospital.
Georgie Hennah 5:08
Again, that was all a bit of a blur. I just heard, you know, phrases being like all the medical terms being thrown around. And it was just all like, what is going on and a bit of context as well, I had never really been to hospital before, apart from when I was about, I don’t know, like, nine, I’d broken my arm skiing.
Georgie Hennah 5:27
So that was ages and ages ago. And so yeah, it was a complete blur, and then complete shock to everyone. But in the ambulance. That’s when I kind of realized, like, Okay, there’s something about the nature of paramedics, they’re just so calming, and I’m every paramedic I’ve ever met, has just been so lovely that I felt really safe.
Georgie Hennah 5:56
But equally, you know, the things that they were saying, I was like, oh my God, this is really serious. But they said, like, bleed on the brain. And my nanny had actually had a bleed on the brain. And she’s no longer with us. But she had one about I don’t know, like 12 years ago, when I was really young.
Georgie Hennah 6:16
And that phrase bleed on the brain, like I’d never really had hemorrhage before, you know, when I was that young and stroke. So when I heard them say bleed on the brain in the ambulance, I instantly felt close to my nanny, and it was really comforting. And I think, you know, she didn’t die as a result of the bleed.
Georgie Hennah 6:37
She only died a couple of years ago. But I just kind of felt like her presence with me, which was really comforting in that moment. So yeah, anyway, there’s so much going on, but I then 24 hours later got transferred to another hospital, which is really well known for its neurology department.
Georgie Hennah 6:59
And it was there that they discovered that it was an ABM had the angiogram. And then they decided that I didn’t need emergency surgery. So they were like toying up between what was the best way of operating, whether it be you know, like Gamma Knife surgery or craniotomy, and they decided craniotomy.
Georgie Hennah 7:21
So two weeks post stroke, and I went into surgery, which was terrifying. But the buildup was, obviously when you’re in there, you just get put to sleep, and then you wake up and it’s over. I think it was worse for my family and friends because it was like a seven-hour operation or something crazy. And so then I spent five weeks in hospital and then was moved to another hospital, which is known for its neurorehabilitation center.
Georgie Hennah 7:52
And I spent nine weeks there. So I was in hospital for about three months in total. And, I did mention that my left side went but I basically had to relearn to use my left hand or whole left side walk on everything. So that sort of came back very, very slowly up until the operation, I was completely no sensation, no feeling whatsoever. And then I had the operation and then a few days later, that’s when the spasticity started to set in. And then yeah, I’ll stop there.
Bill Gasiamis 8:32
It’s alright, I wanted to let you go because basically, you just described my experience. I had an AVM, I had brain surgery, I had to learn how to walk again, use my left side again.
Georgie Hennah 8:47
I didn’t realize you had an AVM I follow you on Instagram and I love all your posts and your questions and everyone interacts with it, but I didn’t realize it was an AVM.
Georgie Hennah’s Possible SymptomsBill Gasiamis 8:57
I was at 37. So I’ve got a question for you though. So in hindsight, I think there was some incidences before my AVM rupture the first time it bled. I think there was a few incidences that I know now we’re probably caused by the AVM playing up or letting me know it was there other than the thunderclap headache. Do you think now that maybe in the past there was some things that were happening to you that are oh my gosh, that was probably the AVM playing up?
Georgie Hennah 9:35
Well, I have thought about this and the only thing that I have sort of thought like right, that must be it because the kind of headache was similar but like not intense. I started like occasionally wasn’t all the time but Only very occasionally, after a really heavy night at uni with friends, I would sometimes wake up with like, I know headache, everyone experiences headaches, but like to the point where I actually couldn’t move my head.
Georgie Hennah 10:19
And it wasn’t a migraine or anything like that. But like it was in the exact same space where I had the thunderclap headache. And it was just so intense and it felt like if I moved my head, my whole brain was like, getting bashed around. I can’t really describe it. And at the time, I just thought, oh my God, I’ve got a really, really bad headache.
Georgie Hennah 10:39
But after paracetamol and some sleep it went and then you know, I never struggled with headaches, it wasn’t one of those because, you know, some people have headaches all the time. They don’t really know why. You know, I’ve never been like that. So I’d say maybe there’s like a few times at uni where I had this really, really bad headache after a heavy night.
Bill Gasiamis 11:03
A heavy night on the drink, right?
Georgie Hennah 11:05
Yes. Yeah.
Bill Gasiamis 11:10
Your headache was weird. In that, like it was kind of isolated, there was a very weird, isolated spot that would kind of make you aware of it.
Georgie Hennah 11:22
Yeah, it was different to other headaches. Put it that way, it’s easy to say now, it probably was to do with the AVM at the time, I just thought it was really, really bad, really bad dehydration, and sleep with a paracetamol, and then it would be gone. So never thought twice about it, really.
Georgie Hennah 11:46
But I can like, remember significant moments, you know, particularly, like moths, that kind of thing where they’d be your day where it would be really bad. But I’ve never mentioned it to anyone because apart from like, whoever I was with, might say, look, I’ve got to bang my head, I’ve got go back to bed kind of thing. But I was never worried about it.
Georgie Hennah 12:07
Just the day after.
Georgie Hennah 12:11
Exactly. So, yeah, but apart from that, I genuinely, genuinely had no free symptoms, like, I’ve always been really healthy, never really been to the doctors that much. You know, I’ve been super sporty, like, you know, not to toot my own horn, but like, I had sports scholarships, and throughout school and college. And, you know, loved the gym a lot of netball and did athletics and things like that. So yeah, it was it was just a complete shock.
Bill Gasiamis 12:44
Fair enough. I’ve got kids your age my oldest is 26, my youngest is 22. So you’re kind of in the middle there somewhere there. And your generation, the millennials have this bad reputation for being, you know, kids that are on social media, you know, they’re not in the present time. All these generalizations that hear about kids that are kind of your age.
Bill Gasiamis 13:14
And, a lot of those kids are also described as having a lot of personality issues, a lot of psychological issues and all that type of thing. I don’t say that with you, right. But I’m curious about how this thing that happened to you at 22 for this supposedly, snowflake generation. Okay, although there’s all the labels that you hear get thrown around.
Bill Gasiamis 13:45
How does it impact your emotional, and your mental health? When one day your quote unquote, normal 22 year old, going to uni, getting smashed with your friends, and doing all the things that everyone does at around that age. And then one day, they’re still doing that, and you’re doing this completely different thing, which is, like you’re kind of fighting for your life, how does that impact you?
Georgie Hennah 14:16
Well, a lot, and I feel like there’s been different stages, because it’s been two and a half years now. And I feel like, you know, recovery it’s an ongoing journey will be until, you know, however long I live for. And there’s definitely been sections to it all so far.
Georgie Hennah 14:39
And I think in the beginning, I think it was a blessing. And it was really hard as well. But overall, I’ve decided that it was a blessing that it happened during COVID because it meant that, everyone was in lockdown so when I was in hospital, no one was doing anything, so I didn’t initially get that kind of I mean, the longer I was in hospital for rules were starting to relax, it was summer, I remember my friends going to the beach and things like that and feeling envious that like I was stuck in hospital and, you know, my world had been thrown upside down.
Georgie Hennah 14:39
But then at the same time, when your life is literally put on the line in front of you. I think it put a lot into perspective for me. And it made me I don’t know, that was sort of like the last thing on my mind. And I was also in this stage of survival mode the whole time I was in hospital.
Georgie Hennah 15:41
And I remember thinking and saying to my family, like, don’t get me wrong, there were times I call my family crying. I just missed them so much because I wasn’t allowed visitors. But equally, I was handling it really well. To be honest, everyone was like, Are you Are you okay? Like you are in really good spirits you’re handling.
Georgie Hennah 16:01
And so I felt this huge sense of gratitude. Like it really made me realize how many people care about me and like love me like the amount of messages and cards and things like that. So I just felt this overwhelming sense of gratitude. And also like pre-stroke a bit of context of, you know, the kind of person that I was pre stroke, but also still am today.
Georgie Hennah 16:28
Is you know, I love traveling. So I’ve been I’ve done a lot of Asia. The summer prior, I’d gone to Bali with my best friend for three weeks, you know, I’ve been scuba diving, love skiing, like I’ve done so many adventurous things. And I was always one, being the kind of person that when I started working, I was 15 I’d save up all my money to go away in the summer.
Georgie Hennah 16:51
And so over the years, you know, that kind of built up, and I just had this huge love for travel. And I think that when I was in hospital, it made me realize, you know, okay, I don’t know what my future looks like. Because at one point, the neurosurgeon didn’t think I’d be able to walk again, let alone like, move my hand and things like that.
Georgie Hennah 17:14
So, you know, at one point, I remember having a conversation with my boyfriend about, like, Oh, my God, what, you know, okay, I might be in a wheelchair forever. And I remember him, like just being so great. And being like, well, we can, we’re talking about, you know, going, like, he’s got a camper van, he’s like, well we can make the camper van, like accessible.
Georgie Hennah 17:32
And we were really like planning for that kind of thing, but being quite positive about it all. And I think when you’re in that survival mode, obviously, everyone has different survival modes. But for me, that’s what it looked like. And then it was when I came out of hospital. And, you know, the reality of what’s happened moving back home to where I previously was, you know, I was this fully abled person.
Georgie Hennah 17:57
I remember specifically, like, the first time going down the stairs, when I left home, I actually wanted to run down them. Because that’s what I wanted to do when you’re in hospital, there really aren’t that many stairs because it’s just so accessible and easy.
Georgie Hennah 18:14
And so, obviously, the good thing about moving home is that it is more challenging. So your brain’s being, you know, challenged constantly. And, you know, I found that in hospital, I was distracted by the recovery in the sense that that’s where my biggest sort of visible progress was made was in those first nine weeks, because I went from being completely paralyzed.
Georgie Hennah 18:14
To then Oh, my God, it kind of felt like each day, there was something new that I was like, Oh, my God, movement, and even the spasticity, like, I had no idea what that was. And even when they explained it to me, I think I was a bit naive.
Georgie Hennah 18:59
And so when I’d yawn, and I don’t know if you had this, but like I’d yawn and my arm would like, move. And I’d be like, movement. And they’d be like, That’s just normal. But I’d be like I don’t care, like my arms moving. And so any sort of glimmer of movement, I was like, right, like, we can work with this.
Recovery Support For Georgie Hennah
Georgie Hennah 19:18
And in rehab, you know, the team of physios, the staff, like the occupational therapists, everyone, there was just so supportive. You had this like bunch of cheerleaders around you, basically, that really believed in you. And I think when you see experts who work with people, like yourself and I, day in, day out, when you see the hope that they have in you, that makes you believe in yourself.
Georgie Hennah 19:43
And so yeah, it’s just like recovery, recovery, recovery. And then you get home. And then it’s like, Oh, my God, I’m in this by myself now. And even though I had physio, I think had a few weeks gap. I And then I started physio and although I was doing it once or twice a week, you know, I went from having this timetable in rehab where I was having like, four hours of rehab a day.
Georgie Hennah 20:13
Seeing different people working on different things, you know, using different equipment to then being at home. And I, obviously, I like, didn’t have a job at the time, like I work with my work really great. And, and so that pressure was removed, but then I had all these hours in the day. And I felt like when I wasn’t doing anything, I felt guilty, I was like, I need to be doing as much as I can to make this recovery better.
Georgie Hennah 20:38
And then there was definitely this whole stage of, and I feel like in the grand scheme of things, I actually accepted what happened pretty quickly. I feel like, and I think that’s what’s enabled me to kind of get to where I am today mentally, because I think, accepting what happened enabled me to just kind of let go of a lot of things and focus on what I needed to.
Georgie Hennah 21:05
But we can come to that in a minute, but was gonna say was, there was definitely a period where I was like, I can’t be happy until I’m better. And I think it took a bit of time to realize that, you know, first of all, I didn’t actually go and look on Instagram, it took me about a year I created it like my journey account when I was in hospital.
Georgie Hennah 21:31
I didn’t actively go and seek other stroke survivors for about a year because I personally, I think I just like wanted to make my recovery my own. And, you know, no doctor could tell me, like, what my future was gonna look like. So I was like, right, I’m just gonna write my own future kind of thing. And I know everyone has different ways of coping, and I met some lovely people in hospital that I was in touch with.
Georgie Hennah 21:55
But yeah, at the beginning, and I’m a very motivated person, very disciplined. And I think, you know, that has its pros and cons. That’s been my biggest strength throughout this recovery journey. But it’s also been, like my biggest. I don’t know, yeah, maybe weakness, or I don’t like the word enemy. But sometimes it’s been my biggest battle is myself. And how hard I can be on myself,.
Bill Gasiamis 22:24
I think there’s a really good side to being hard on yourself for the right reasons. If you’re being hard on yourself, just because you want to give somebody hard time and it happens to be you well, and there’s no real outcome for it. And then that’s really hard to overcome. And that’s a cycle that people if they get stuck on that it’s destructive, right? But if you’re hard on yourself from the point of view of, you know, I’ve been sitting down and watching Netflix for four hours.
Bill Gasiamis 22:54
What am I doing? Get off your ass and go and do something, and then you do something, and then that’s something makes you neurologically tired or fatigued or whatever. I think that’s good, because what you’re doing is you’re pushing yourself to get back to neurological fitness, and to achieve overcoming all the things that you need to overcome, and it takes time, and you have to push the limits.
Bill Gasiamis 23:19
If you don’t push the limits, you don’t know where they are, and you don’t know how far you’ve come and you can’t fine-tune, your recovery. So I think that kind of being tough on yourself is good. I’m not motivated, but I’m gonna get up anyway. That’s really good. But other people who hate on themselves by saying you’re an idiot, you’re stupid, or they hate the fact that they found themselves in the situation, and they blame themselves and all that type of thing. It’s really, really destructive. And that’s not going to help anybody in any part of the recovery at all. I like your approach to the doctors.
Intro 24:06
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, and doctors will explain things but obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 24:31
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you. It’s called seven questions to ask your doctor about your stroke.
Intro 24:50
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition. They’ll help you take a more active role in your Recovery, head to the website now, recoveryafterstroke.com and download the guide, it’s free.
Bill Gasiamis 25:09
No one’s gonna tell me what I am and what I’m not going to do, how far I’m going to go and what I’m going to achieve. I love the fact that you’re working at 15, a 15, you’re getting schooled by people who really don’t give a shit about you, other than they want to make the most money out of you, the 15 year old who they’re paying the least amount of money, you know, they want to make profit off you.
Bill Gasiamis 25:38
So what they’re doing is they push you, they train you, they teach you. And they’re taking advantage of the fact that you’re 15. And they’re paying you a small amount of money. And that’s forcing you to learn what the world is about. It’s forcing you to grow up, it’s forcing you to learn the kind of people you want to look up to, it also gives you the opportunity to create boundaries from people that you don’t like.
Bill Gasiamis 26:08
And people’s ideas that are not aligned to yours. And it seems like a trivial thing to get a kid a job at 15. But it’s such a massive way to bring kids at 15 from being an adolescent from being a teenager, to beginning that evolution and the growth and the wisdom that comes with interacting with people a lot. And it makes you less naive.
Georgie Hennah 26:41
For sure, and I remember it was my dad, we live really close to a pub. And, you know, because we live just up the drive from them. We knew the owners quite well. And I remember my dad, as soon as I turned 15 he was like, right, go down there and ask for a job. And I’d obviously being 15 like oh, no, I put it off. I’d call them they wouldn’t answer. And then I’d be like, okay, they didn’t answer and but like, call them again.
Independent At 15 Georgie HennahGeorgie Hennah 27:09And he really pushed me to go and get a job. But you know what, like, it started off as I just worked like four or five hours on a Sunday, serving roast dinners, and you know, but you just meet so many different people, and it got you out of the house. And I really, you know, learn I really didn’t earn that much money. But when you’re 15, you know, getting 20 quid on the weekend, you know, that’s huge.
Georgie Hennah 27:31
So, you know, I learned the value of money. And obviously, at that age, you’re not paying for any bills or anything like that, and not even really spending money on, you know, anything expensive at all. So I would just save most of it for them the summer. And you know, at the time, I had a friend who had a holiday home, so I’d saved to like, you know, for flights to go there and things like that. So yeah. And then it was kind of like, right, that summer was great. I want next summer to be just as good. So that was keep the momentum going. And so I have my dad to thank for getting me out of the house to go and get a job at 15.
Bill Gasiamis 28:08
Yeah, it’s kind of like independence, right? It starts building the understanding of what independence is about. And then when you end up being home, well surrounded by family, but alone in your recovery. That’s when your skills that you learned a few years ago, start to come into application, and then you go, Okay, I have to be I have to drive myself, I have to be self-motivated. I have to use the skills that I did when I was at the pub because at the pub.
Bill Gasiamis 28:40
If I wasn’t self motivated, the last thing you wanted was somebody telling you 15 times a day go to the counter, pick up a meal and serve it. You just needed to know that. That’s what you had to do. So it’s kind of like an instinctive thing that you have to develop. That’s not really instinct, you have to think about it or the first few times and then later, you can apply it to other things in life.
Bill Gasiamis 29:07
I wanted to focus on this part of the conversation because I mean, it’s a weird thing. You’re an adult at 22. But it’s such a young age to have to go through something so life changing. And I remember how dumb I was when I was 15. Although I worked and did all those things are still the you know, the gap between 15 and 22.
Bill Gasiamis 29:33
That’s not a lot of time to grow a brain and be able to handle dramatic things. Maybe it’s different for girls. I don’t know if that actually applies. But I just love the way you’re talking about how you went about your recovery and what you were thinking and your mindset seemed to be really solidly grounded in this foundation that I think played a massive role.
Georgie Hennah 30:04
Yeah, and I think, you know, I’ve never really made the direct correlation between, you know, having a job so early, but I’ve always been, and I think I’m very similar to my dad, in this sense, you know, I’ve always been get up and get things done in the morning. You know, I’m a planner I’m organized, you know, get my clothes out the night before, you know, just always been quite routine focus.
Georgie Hennah 30:32
And my friends are always telling me anyway, before all of this, that would always be, you know, the friend that would look on the brighter side, or have that kind of mindset. And I don’t think I just magically, you know, had this stroke, and then all these qualities appeared, they were actually a part of who I was, but the stroke has enhanced them and actually put them to really good use, and they were being obviously use well, throughout going to uni, and things like that.
Georgie Hennah 31:02
But I feel like it’s really brought out qualities within me that, you know, yeah, have just completely got me to where I am today, which has been a benefit for sure. We’ll do that. Yeah. But it’s not to say, you know, it’s bought out, it bought out those qualities, but then there’s obviously the whole topic of, you know, feeling well, the grief that comes with it as well, and losing parts of your identity, as well.
Georgie Hennah 31:36
And, I mean, that’s a whole lot. I could speak for hours on that as well. But I feel like that’s been a whole journey. And it still is, but equally, I’ve definitely I moved out again, while I had to move home. When I had the stroke, I was living at home anyway, because the pandemic, I was in London before then moved home had the stroke was there for two years.
Georgie Hennah 31:59
And then I actually had moved back out to London, only about seven weeks ago. And I feel like, you know, and I went traveling round Borneo in June with my boyfriend, I’ve basically just been like, you know, stepping out of my comfort zone, and my stroke comfort zone, and have actually come to realize that parts of me that I thought were dead, or thought I no longer had access to have actually been reignited in situations that you don’t get when you’re just sat at home or, you know, in everyday life.
Georgie Hennah 32:37
And so, you know, obviously I mentioned that I was really into travel. So then when I went abroad, and especially somewhere like Borneo, where it’s so stimulating, you know, the culture, the wildlife, the temperature, like there’s so much going on and being with Richard, it was just so freeing, and it made me realize that no matter my physical abilities, which you know, I mean, I don’t see myself as disabled, because I feel very able with what I can do.
Georgie Hennah 33:06
But my I still have muscle spasticity on my left side, so my arm gets really tense. And I’ve got a bit of foot drop, so I can’t actually lift my foot up and outward. So I use electrical stimulation. And so I have to be steady. And so despite the physical restrictions, you know, I realized that I could still go to Borneo, and I can still experience this new culture and all these amazing things.
Georgie Hennah 33:33
And, ignited feelings that obviously I hadn’t felt in a while because of COVID. And because I’m stuck at home. And so I was like, Oh my gosh, there’s parts of me that are still there. And so since then I really been just, you know, leaning into stepping out of my comfort zone and it was actually Borneo that made me realize like, Okay, you’re way more capable than you realize.
Georgie Hennah 33:56
Let’s move out. And so that was what got the ball rolling. And then it was in Yeah, that five weeks before I actually moved out. We found a place. And then since I’ve moved to London and just been living independently, again, well, for the first time since the stroke. It’s just again, it feels right. It feels normal. There’s still things I have to think about this still, you know, rehab that I do.
Accepting The New You
Georgie Hennah 34:21
And it’s just adapting. And I feel like there’s Yeah, been parts of me that have been reignited. And I’m like, I just feel like I’ve got this new lease of life again, which is really promising. And I feel like, you know, that’s kind of the message I’m trying to put out there on my Instagram and what I help other people with is, you know, whatever. I think there’s, you know, we’re not the same person that we were pre-stroke.
Georgie Hennah 34:47
We’re not. And that’s okay. And it’s coming to terms with what’s happened, but also realizing and I know everyone’s situation is very different, and I’m speaking on behalf of my own situation, but I also see it within other people as well. It’s coming to accept and then adapting when necessary. But realizing that, you know, there are still parts of the old you that you can access and reignite.
Georgie Hennah 35:17
And the ones that you can’t, that’s because you’ve grown out of that. And it’s time to like, step into the new you. And so making that connection, and it’s been like a, you know, a journey, like it’s ongoing, and it still is, and don’t get me wrong. You know, I was only a few months ago, where I had a whole period of grieving again, which really took me by surprise.
Georgie Hennah 35:41
So like, I haven’t felt like this in ages. But at the moment, I’m feeling really, really comfortable in my own skin and just kind of feeling really good. And it’s sort of it’s all been through stepping out of my comfort zone and reigniting parts of me that I thought were long gone.
Bill Gasiamis 35:59
Is the comfort zone surrounded by fear when you’re there. It sounds like it’s, you know, they say, the comfort zone, it sounds warm and fuzzy and cuddly and all that, but it’s not really. It’s actually, I feel like if I’m in my comfort zone, I’m overthinking the next step. I’m fearing what’s out there. I’m anxious about what’s out there. That comfort zone is not comfortable at all, it’s so freakin uncomfortable.
Bill Gasiamis 36:28
And the release from all of that anxiety and fear and concern and overthinking happens when I crossed the threshold, you know, and that’s kind of like, I look back and go, ah, actually, that wasn’t that bad. No, no, no, I ever thought that or why did I take so long? And oh, my gosh, I’ve learned something new. What you said about identity is people put their identity to rest, like they completely totally put it to rest when they’ve had a stroke, because they’ve got a new thing that they have to grapple with.
Bill Gasiamis 37:12
And, and they’ve got to merge it into their, “old identity”, which is not their old identity. It’s just still their identity. But they also take a short term view. And they see that pause that’s happened right now as being forever, and there’s no light at the end of the tunnel. And it’s not true, right. So I’ll give you a classic example. My dad’s been really healthy his entire life.
Bill Gasiamis 37:41
And he’s still is he’s 80 next month. And he’s got some usual health issues in at 80, the standard stuff. And he had a knee surgery probably about six years ago, seven years ago. And he was off his feet because he had to recover and rest his leg just for that three, six month period, because he had a new knee.
Bill Gasiamis 38:10
And he couldn’t come to terms with the fact that now it was time for sitting down resting and not doing all the things that he always did. But that drove him nuts. And you could see his mental health really declined rapidly, just simply because of this time of rest and recuperation so that when his knee is better, he can be back to normal.
Bill Gasiamis 38:36
But trying to bring him out of that kind of funk. And, and out of that headspace was really hard. He used to get really emotional and upset about it. And he thought he’d never walk again, when every other person who’s ever had a knee surgery, like his has walked again. And it was really difficult to kind of shift.
Bill Gasiamis 38:58
But he had such a long time of experiencing his body in a certain way that this new thing he couldn’t come to terms with and he couldn’t say to himself, I’m a granddad, I pick up kids from school. I do these tasks for my wife and for my sons and for whatever. And I rest and recuperate when it’s necessary.
Georgie Hennah 39:30
No, it’s so true. And I think it’s so complex. And I think people do it subconsciously without even realizing that they’re like, I specifically remember looking at pictures and videos of me pre-bleed, and there would always be this like, pre-bleed post-bleed me.
Georgie Hennah 39:56
But now I actually see myself as just this continual like, I’m still the same me, I feel like that separation is actually, there’s no separation anymore, I just see it as different stages of my life. And it’s so freeing to get to that realization, because before I look at videos and photos of me pre bleed, I would feel so detached from it, that I would look like, I feel like I’m actually looking at a completely different person.
Georgie Hennah 40:22
And that was what was really upsetting. Because you just want to like, click your fingers and go back to that time. But then, you know, as time goes on, and again, as much as you have to do your own self work and things like that time does also play a massive part in it, because over time, you experience more things, you’re exposed to more things which slowly boat, you know, piece by piece, help you rebuild.
Georgie Hennah 40:47
And, like, you know, there’s so much to it, but it helps you sort of get to where you are today. But I feel like as I mentioned that over the last, I’d say even probably this year in particular, because a COVID is not as prominent, you know, society’s got more freedom now anyway, you know, I’ve been abroad again, since which sort of reignited that spark of travel, which, by the way, I was super anxious about beforehand.
Georgie Hennah 41:15
And going back to that comfort zone thing. Yeah, I think when something to do with your health happens to you, you know, there’s no one can tell you, like, no one can calm you down when you’re feeling anxious about your health, because your health, like, you know, someone say all the chances are so smaller, but given the chances of a 22 year old having a ruptured AVM.
Georgie Hennah 41:38
And it happened to me. So, of course, I’m gonna worry about X Y, Z. But you know, so I just gone off on a complete tangent, I think, why was trying to say was this separation between like pre-stroke, post-stroke I think it takes a lot of a lot of coming to terms with but the more you can put yourself out there, the more you can continually step out of your comfort zone, the more you’ll realize you’re capable, which will then you know, make you want to keep going and going out your comfort zone.
Georgie Hennah 42:13
And then before you know it, you are doing things and experiencing things that you would have pre-stroke, I think some people right off completely, and they think they will never be able to enjoy anything again, because they’re now in this box. And it’s like, you know, obviously everyone has different relationship with labels.
Georgie Hennah 42:35
But for me having a stroke is just something that’s happened to me. And it’s a part of, you know, this big journey. And, yeah, it’s a crazy ride. It’s scary to let go of, you know, pre bleed, and like that sort of, for me, obviously, I was so young.
Georgie Hennah 42:35
So I hadn’t, I had a really smooth upbringing, and, you know, great friends and great relationships and things like that. So I really did have a smooth ride up until I had the stroke. And so I was clinging on to that for for a while, but I think I quite quickly realized to let go of that, because that was causing me more pain. And that was stopping me from enjoying life for what it was and being present and all those things.
Stroke Closes And Opens DoorsBill Gasiamis 43:30
Stroke closes doors, 100%. There’s no doubt about it. But it also can open doors. And for me, I mean, and I get people who are listening and going well, but your strokes not like mine, or you’re not as bad as me or all those things. Well, I’ve been going through this for 10 years. And I could have had mental health issues.
Bill Gasiamis 43:55
I could have had emotional issues. I could have had all sorts of issues about fear and not overcoming, not facing my fear I could have, but I wouldn’t got the help I needed. I went and got emotional support well and got counseling. And I still go to counseling, I still speak to people who support me emotionally properly, not people who don’t understand what emotional support really means in his right.
Bill Gasiamis 44:18
I’m talking about people who, who can guide me through my emotional turmoil as well as my mental health turmoil, right? So for me, it’s opened the door of this podcast that never ever would have existed if I didn’t have a stroke. No, ever, I would not have in a million years thought that what I should do in my life is find a topic and start a podcast about it. I didn’t feel like I had experience in anything that I was qualified to talk about.
Bill Gasiamis 44:52
And I never thought I would so I did it. I didn’t do it until I now I’m qualified to talk about my experience with something that is really dramatic, that makes a real difference when other people hear me talk about it. And as a result of that, it allows me to then also close a gap that I felt that it existed when I left hospital when I went home, which was why the hell is nobody talking about this?
Bill Gasiamis 45:25
How is it that I don’t know other people have had a stroke, and how they’re overcoming that and what they’ve learned from it, and how they’ve grown and evolved their identity from it. And it’s, for me, this is a ridiculous idea that I had to go through something so dramatic to get to this side. And this side is all pushing through all of those barriers of I’m going to speak about stroke, what are people going to think of what to say? And oh, my gosh, they’re going to harshly judge me. And they’re going to who knows what.
Bill Gasiamis 46:04
And I paused the podcast for a little while, because I was afraid to record new episodes. I was afraid to get rejected from people who I reached out to to be on the podcast. And it’s like, well, how weird is that? Why would I be afraid for somebody to say no to a podcast, it’s not a date, I’m not 14 and asking the girl that I am in love with, to come on a date with me.
Bill Gasiamis 46:33
And if she says yes, I’ll be heartbreaking for the rest of my life. It’s a podcast, it’s a conversation, we get to learn. And we get to therefore help each other and then help other people who are listening and learning from us. And that’s stroke opened up all those possibilities for me. And I don’t know what your problem is, and how bad your stroke is and what it’s caused for you.
Bill Gasiamis 46:55
But if you just get curious about what doors can be opened, and you open them, and just peek through them at the beginning, not even go there, just open it a little bit and just have a cheeky look in, you might be amazed at what it can do.
Bill Gasiamis 47:14
And it sounds like for you going and having their first trip after stroke, which was really hard for me too, because my wife and her amazingness decided that our first trip was going to be the other side of the planet Melbourne to New York. And we had to travel for almost a day to get there. And I felt like if I’m traveling a day to be away from my hospital, and my doctors and all that kind of stuff.
Bill Gasiamis 47:42
And I’m in this other country where I don’t know anybody. And something happens to me. What the hell like it’s going to be terrible. What am I going to do? How am I going to manage that? How are we going to keep me healthy and well and alive. Last thing I want to do is die overseas, you know. But that can happen to a normal person, you can get hit by lightning overseas, anyway.
Georgie Hennah 48:06
Exactly. And that was exactly the thing with me. I mean, when we booked the trip, we were originally going to Sri Lanka, but then literally a week before we were due to fly, see, there’s been a huge economic crisis over there, and the government has actually advised not to travel there.
Georgie Hennah 48:21
And we had, you know, booked this for a while, and we really still wanted to do a big trip and go sort of Asia way. And we looked at like, cheapest flights and flights at the moment are just crazy everywhere. But Kuala Lumpur was, you know, our sort of like, next best thing and my boyfriend’s got family in in Borneo. So that’s why we chose to go there.
Georgie Hennah 48:41
Obviously, that is far from the UK. And I haven’t mentioned this yet, but about nine months after surgery, I actually started getting focal seizures. And so I mean, that for me was actually more traumatic than the whole stroke itself. And, and that that is something that I think is caused biggest anxieties around my health because I feel like with the AVM I’ve seen on scans, it’s been physically removed, and I’ve had that confirmation that it’s gone.
Georgie Hennah 49:17
Whereas seizures, obviously, they’re unpredictable. And so Touchwood I’ve only had two and since I’ve been on tablet like medication, haven’t had any, but going to Borneo, which was eight hours time difference. And I’m taking this medication at set times morning and night.
Georgie Hennah 49:35
You know, there was that whole anxiety as well but I can’t, you know gotta make sure that I adjust my timings before I go and this, that and the other but I realized that the first time you do anything, especially that big is gonna be scary. And if you don’t do it, then you know, your world just stay so small but like you said, You’ve got to lean into these things because you don’t know what’s out there.
Georgie Hennah 50:00
When you open one door like more doors open, so for me obviously going to Borneo and then it opened a whole new door of like moving out. And, you know, that’s opened a whole chain of doors. But also, I’ve just lost my train of thought. But yeah, stepping out your comfort zone and, the worries are managing that.
Georgie Hennah 50:20
But that’s one thing that I kept telling myself was, right, you’re not the only person in the world with a health condition, you’re definitely not the only person in the world that has to take medication that travels, like the doctors have said, you can travel. So you know, and I just did everything I could to prepare.
Georgie Hennah 50:40
So I spoke to like an epilepsy clinic got their advice on, you know, take, like adjusting my timings of medication. You know, they were super chilled about it on the fence. I was like, Okay, this is, you know, not that bad. I printed out every document that I needed to just in case and, you know, it was fine.
Georgie Hennah 50:57
I wrote about this on my blog, actually, because I wrote about my travels. But I remember getting on the plane and just as soon as we were in the air, and I realized that my head was gonna explode because that was another just like, catastrophic anxiety is like, Oh, this is my head going to be okay, like going up in the air?
Georgie Hennah 51:18
But as soon as we get up in the air, I was so excited. And I felt like I was literally living the metaphor of it’s not even about the destination. It’s about the journey. And it sounds really cringey. But just the whole I’m on a plane, and also forgot to mention, we just so happened to fly on the two-year anniversary of my stroke.
Georgie Hennah 51:47
So that was a coincidence. And yeah, so I was in the air. And I was like, Oh, my God, two years ago, you know, my whole world has flipped upside down. And today, I’m getting on a plane and going across the world, you know, and I was able to go snorkeling and, you know, obviously, take precautions.
Georgie Hennah 52:07
And don’t get me wrong, maneuvering on the boat and getting on and off the boat was not pretty or elegant. But I was like, I’m gonna make this work. And, you know, I got to experience some amazing things. And I think, yeah, you just got to trust yourself, because you’re always more capable than you think.
Bill Gasiamis 52:26
Yeah, I think people notice people who are physically abled notice disability more, when somebody is not confident, like you said in their own skin. And, and has, you know, trepidation about being exposed on, for example, in your perfect situation, like on a boat, where your physical limitations make it a little more whatsoever, like, you got to take a different approach to getting your gear on and getting in the water and then getting out of the water.
Bill Gasiamis 53:09
It’s kind of different. But I think when you’re the person that’s overthinking that and concerned about that. I think you make disability more visible to other people. And I’m not saying you shouldn’t be cautious but I feel like there’s a mindset to that as well. I feel like how you hold yourself and express yourself and think about yourself and talk about yourself, even though your body is different than what it was before stroke.
Bill Gasiamis 53:50
Allows the person to make a more awkward for themselves in that situation. And I say that because one of my favorite and I love everyone who I’ve had on my podcast, okay, so please, nobody take it the wrong way. But one of my favorite episodes was way at the beginning like very, very early. It was episode 47 with Maggie Whittum.
Bill Gasiamis 54:17
And Maggie was an actor, and I think a model and she had an AVM and it bled when she was 33. And it impacted one side of her body really dramatically. And she went through all the hell that we all went through all the emotional or the mental anguish all that stuff.
Bill Gasiamis 54:42
And she has probably pain and suffering from past spasticity and all the stuff that we hear about that’s common. But in her identity was is real desire to be an actor to still do the stuff that she always does. And she found near where she lives the most amazing organization, it’s called The Phamaly Theater, I think it’s in California, somewhere, it might even be in Los Angeles, that put on productions, and all the people, are people who are somehow physically disabled.
Bill Gasiamis 55:32
And she’s done a documentary. And she has done all these things that are related to how she experiences the world. And even though, if you listen to the episode, you know, she’ll explain the difficulties and the challenges and all the problems and all the stuff, even then she still goes about participating in life fully.
Improvise, Adapt, And Overcome
Bill Gasiamis 56:06
And that is what I’m kind of saying like, and that makes it so much better when you have to deal with all the physical limitations of what a stroke has done to you. And it’s not easy for her to physically participate in those types of things. And in life, to that extent, it probably was easier physically. But within her, there’s this innate need to continue to do that.
Bill Gasiamis 56:38
And she’s just found a way to do it. And I had the pleasure of viewing her documentary before it was released. And I’m not sure if it’s actually released yet, like, properly. And she asked me to review it and tell her what I thought about it. And it was so amazing to see that and it’s such an important message that needs to be said, and it can’t be said by “abled-bodied person”.
Bill Gasiamis 57:11
Before stroke, I could not represent this community, I had no way of doing that. And now we can, so she’s doing amazing work, really important work, and she’s living life fully. And she has a desire to help other people. And that helping other people has kind of made projects that should be impossible for her possible, and that’s doors that open for her. But other ones were closed her career in the able-bodied acting world has ended. But she shifted it.
Georgie Hennah 57:51
Yeah, I feel like, you know, you’ve just got to be able to get over the idea that, for me, I realized, as soon as I realized that I can still do things, but okay, they might not be how I pre-stroke envisioned, but I’m still able to do them, that my body, you know, there might be different, like limitations in my body and things, but it’s letting go of the idea of like doing things perfectly.
Georgie Hennah 58:25
And enjoying them for what they are and with, like, on a smaller scale in relation to like my relationship with exercise. So I was, as I mentioned, like, super sporty and into my fitness pre-bleed. And I think in the beginning, I unfollowed I mean, I came off Instagram for months, whilst I was just, you know, focusing on myself, but when I redownloaded it, I unfollowed I muted everyone that posted that they were going to the gym, I unfollowed like so many fitness accounts, because I was so envious, that I couldn’t move my body in the way that, you know, “normal” people could.
Georgie Hennah 59:05
But then I’ve managed to I kind of had this realization because I decided one day to just put on a hit workout. And, and just kind of give it my all I had to make adaptations. I couldn’t do the exercises properly. But you know, the music was going I was just getting my heart rate up. And you know, left, my left arm was trying to get involved in it. And it probably looked hilarious for anyone. No one was watching, thankfully.
Georgie Hennah 59:30
But I then realized that I could get this same physical biological reaction from just moving my body vigorously. Like no matter what it looks like, I can still get the same physical effects that pre-bleed Georgie could have got and I realized that I then shifted my whole focus on you know, obviously I’ve still got goals and things within my recovery. But when I do exercise, I think about moving to feel good.
Georgie Hennah 1:00:00
Rather than to look good or whatever, you know, because there’s a whole societal, you know, I think, bad relationship with exercise and stuff anyway. But I think, yeah, focusing on how it makes you feel, really removes that sort of awkwardness and lack of confidence in how, you know, the way my body moves now. And since I moved to London, I’ve joined a gym.
Georgie Hennah 1:00:24
And, you know, I think, if I’d have let my fear of how my body moves, well, I wouldn’t be at a gym, if I’d have let that fear completely take over and going to the gym as part of my weekly routine. I see people I’m, you know, and so I think again, that’s something that breaking through that fear. And also, yes, it’s going to be scary going to the gym every day, to be honest, before I’d even had a stroke, right?
Georgie Hennah 1:00:47
Joining a new gym, I’d feel scared because you go there, and you know, you don’t know where the equipment is, and things like that. So, yeah, I think, definitely that lady sounds super inspirational and I love I can completely resonate with her mindset and how she’s doing things, because I think I’ve just always thought, you know, there’s no one.
Georgie Hennah 1:01:07
And I think this is where denial can come in handy at the beginning. Because I was in a bit of denial at the start is like right, you know, recovery, like Sony and take a few months, then we’ll be back to normal. And but I was like, I’m gonna write my own story. And yeah, and it’s just opened doors and, and here we are today.
Bill Gasiamis 1:01:27
I love the gym thing, because self doubt at a gym. I mean, that happens to most people. Especially when you’ve got the, you know, the meathead in the mirror, you know, doing these runs, and you know, looking amazing and whatever. And then you realize, in order for me to be like that, I’ve got to put in seven hours a day, seven days a week and stuff that I’m not doing that I can’t be doing that I’m doing it to gain.
Bill Gasiamis 1:01:52
For me, before I go to the gym, I’m doing it to gain strength. That’s it, it’s just muscle strength. And everything else that comes with it is a bonus, right? So I don’t enjoy going to the gym like I used to either because my left side is weaker. So I don’t, I feel uncomfortable, especially when I’m doing dumbbell bench press, bench press or dumbbell presses, right. And it’s like, my left side doesn’t want to hold the weight there.
Bill Gasiamis 1:02:22
But my right sides going well. Come on, let’s go again and the left sides game, stop, stop, you idiot, stop. So it’s really understand, I understand, like, there’s a lot going on, when you go back to the gym safety is an issue. If you, if you compare yourself to other people, that’s going to be an issue.
Bill Gasiamis 1:02:45
But if you change the reason why you go because exercise is really important for a healthy brain and a healthy body and to keep everything flowing and working in your system. If you change the reason, then you stop comparing yourself and stop looking and stop trying to achieve something that’s always been unachievable for you because you’re not prepared to do the work anyway. And, and you get out of that kind of negative application, I suppose of the gym, and you start doing the gym, for what its purpose is to keep people healthy, and physically strong.
Georgie Hennah 1:03:30
I think I think even, you know, before I had the bleed, I’ve kind of got bored at the gym. And when I was running a bit more. And I had to remind myself, before you had the bleed, like you weren’t even interested in the gym anyway. And I think when the choice is taken away from you, and I’ve only just started going back to the gym, because the last couple of years, I’ve been really working on my fine tune movement to make sure that you know, form because obviously, there’s no point in going to the gym and trying to build your strength if you’re doing it completely wrong.
Georgie Hennah 1:04:06
And so I mean, patience is something that had to really work on as well. But I’m now at a place where I’ve got a gym program, it’s been approved by my physio and stuff. And, you know, again, I’ve had to kind of like, put my ego to one side and get over the fact that you know, I’m not lifting as heavy, anywhere near as heavy as what I used to. But again, don’t for what it makes me feel.
Georgie Hennah 1:04:27
And also when you actually remove like the weights and things like that, at the end of the day. I’m doing what everyone else down to the gym is doing, I’m going with a bit of a program going there to feel good to move my body and I leave it that’s what everyone else is there to do doesn’t matter. You know, everyone in the gym is focusing on themselves anyway, because everyone there is you know, regardless of you know, what you look like or how strong you are, everyone is only focused on themselves.
Georgie Hennah 1:04:55
And so when you start thinking like that, that can you know work wonders. And like I said the first few times it feels a bit scary and daunting. But you know, I’ve been going there for a couple months now. And yeah, I just, you know, If anyone looks at me funny or realist, they might not even it’s just your interpretation. I think a lot of the time, how you think people think is actually just a projection of how you feel about yourself? Yeah. So yeah, but no, it’s been good.
You’re Not AloneBill Gasiamis 1:05:26
One of the other awesome people I’ve had on the podcast is Kelly Studebaker, she was on episode 106. And she’s a powerlifter, but she has rightside spasticity. And she’s very much unable to lift weights with her right side of her body. Her arm is very tense, her fist is clenched, and her walk is affected, right.
Bill Gasiamis 1:06:01
So she can’t do the regular stuff. But she’s a one sided powerlifter. Her left side is jacked, it’s like, huge, and her right side is not. And it’s a completely different physique on each side of her body. And she has been recovering from a ruptured AVM from the age of 11. And she’s just gone stuff it, I’m going to become a powerlifter. And she also knits scarves.
Georgie Hennah 1:06:39
Knitting is really good for the brain.
Bill Gasiamis 1:06:41
Yeah, and hats and stuff like that. So you kind of, there are people out there that are doing this, and you’re not alone. It’s not, you’re not just the only person on the planet that’s going through this. And if you search, you will seek them out, you’ll find them. And, and they’ll teach you there. And I and so many people that have been through what we’ve been through, want to help, and they’ll teach you how they got over it over their issues or how they overcome those challenges.
Bill Gasiamis 1:07:13
But to see, like, I can’t imagine powerlifting ever in my life, not before stroke, not after stroke. And then to see somebody doing it the way that Kelly does, it is so cool. It’s impressive, even, like it’s just impressive, just full, full stop and forget about all the other stuff. But then when when I think about, you know, my deficits, then it’s even more impressive. Like it’s super impressive. I love it. And it’s one of those things that certain people told to short and be able to do.
Georgie Hennah 1:07:52
Well, and do you know what? That’s the biggest? I think a lot of people I’ve spoken to stroke survivors who have been told by doctors, by health professionals, you know that you’ll never be normal again, or whatever phrase that you know, and I think sometimes we forget that they’re speaking to, they don’t realize how much influence they have on someone’s belief, especially in the early stages.
Georgie Hennah 1:08:21
And as I mentioned, I felt fortunate that the physios that I was surrounded by like I they believed in me when I didn’t believe in myself, which then fueled you know, the whole thing and my physio since I’ve been out of hospital. My god, there’s she’s having me doing things that I genuinely like laughed at her. I laughed in her face when she told me to start running.
Georgie Hennah 1:08:42
I couldn’t even walk properly yet. And she was like, right, we’re going running today. And I literally was like, Are you joking me? But because she believed in me. I mean, I was terrified. But because she believed in me, I was like, right, okay, I’m so scared.
Georgie Hennah 1:08:55
But like, I’m gonna do this, because, you know, and again, that’s just helped my recovery so much, because, you know, I can’t necessarily run properly, but it’s, you know, gets your I don’t know the science behind it, but it gets your neurons and like taps into those more sort of like rhythmic natural patterns which are stored in our central nervous system, I think as opposed to our actual like, cognitive thinking.
Bill Gasiamis 1:09:24
First it increases your dopamine levels, it increases your endorphins, it increases all the positive things that you know and hear about about you know, what makes you happy and what makes you feel alive and what makes all your organs work and what makes you have a good night’s sleep and what gets your digestive system going like impacts us in so many positive ways.
Bill Gasiamis 1:09:49
It’s just ridiculous. And there’s so much written about it. It’s so important for brain health. It’s the most important thing. It doesn’t matter how fast you are, you could just be somebody that’s fresh out of stroke in a wheelchair, you can only move one side on your body. And what you’re doing is you’re in your wheelchair and you have attached just and you grab the pole with, with your other hand, and you’re just pushing and pulling yourself away to and from that pole.
Bill Gasiamis 1:10:17
And whatever way the wheelchair rolls, you’re just resisting and pushing and pulling forward and backwards. And that’s it, that is supporting lung function, heart function, you know, the kidneys, the liver, everything in your body, as well as your mental health and your emotional health. So, I mean, it’s a no brainer, it needs to, it needs to be something that we focus on.
Bill Gasiamis 1:10:47
And, it’s so useful and beneficial at small levels, that there is no excuse for anybody. Everybody can do it. And there you go, I’ve just hopefully opened some doors for people that they thought was impossible, because they don’t see pushing and pulling yourself on a pole in your wheelchair, they don’t see it as being exercise. But it definitely is.
Georgie Hennah 1:11:12
For sure, and just to kind of like on that point. And there has been a common theme, you know, stepping out your comfort zone and things. But one thing I’ve come to realize is that the biggest limitations are the ones that I put on myself. Not my physical limitations, and I think it can be easy to blame, you know, are like, you know, my left side can’t move anymore.
Georgie Hennah 1:11:40
For me, it’s been my left side, my foot can’t move and things like that, and spasticity and seizures and all this worrying. I think naturally, you know, we bought kind of strikes, we put ourselves into this box of had a stroke crime, you know, disabled, I’d really don’t like that word. Because I do think that, you know, this being in brackets, because it’s like, everyone’s able to degree and yeah, and I feel like, it’s dropping that that expectation of what it looks like when you’re doing something and being open-minded, being curious, like you said.
Georgie Hennah 1:12:19
Because where there is a world that is a way and, you know, if you’re going to be pedantic about and be like, well, I can’t run exactly how I used to then, you know, obviously, that is fact and that is the truth, but equally, that holding on to that is just stopping you from, from enjoying so much. There’s so much out there for people to still enjoy, you know, even if, like, I feel like I’ve gained so much since the AVM rupture.
Georgie Hennah 1:12:48
Even though I’ve ironically lost mobility. You know, and I mean, part of the work I do is helping people to thrive again, after stroking and you know, help with their mindset and things like that, because, and I’m aware that everyone has different upbringings and is exposed to different, you know, things and, you know, some people aren’t even aware that there is this alternative way of thinking and yeah, when you’re able to be more curious and open minded and stop comparing yourself to others. It’s really liberating.
Bill Gasiamis 1:13:26
I 100% completely agree. I love the wisdom in your young years, in your 25 years. It sounds like you’re kind of old soul anyway, and quite wise, even though you hadn’t gone through the stroke yet. But now, it sounds like you’re somebody that, that I think you’re setting a great example. And people can learn from your recovery, all people of all ages, right.
Bill Gasiamis 1:13:58
And I really appreciate that. I really appreciate that there are younger people like you who are doing this type of stuff at your age, because there’s a lot of other younger people having strokes that might not relate to an older bloke like me.
Bill Gasiamis 1:14:17
And even though I’ve been through similar things that they’ve been through, they might be going well who is this old bloke from Melbourne that I don’t know, or can relate to, or see themselves relating to so it’s really good, and it’s really important, and I’m wondering, here’s something that I’m gonna throw out there see, weather this little seed germinates, and I wonder when the books gonna be written.
Georgie Hennah 1:14:41
Oh my gosh, so many people have said that to me. I definitely. It is on the agenda. But I feel like I feel I’m like collecting the chapters. You know, I think when I’ll know when the time is right, I think yeah, I’ve got a blog, and I’m not as active on it as I used to be, but I do keep record of things that are going on, you know, so who knows some point in the future hopefully.
Bill Gasiamis 1:15:12
Georgie, thanks so much for being on the podcast. I really appreciate it.
Georgie Hennah 1:15:15
Thank you so much for having me. It’s been a pleasure to be here.
Bill Gasiamis 1:15:19
Thanks for joining us on today’s episode. Sharing the show with family and friends on social media will make it possible for people who may need this type of content to find it easier. And that may make a massive difference to someone that is on the road to recovery after their own experience with stroke.
Bill Gasiamis 1:15:37
If you are a stroke survivor with a story to share about your own experience, come and join me on the show that interviews are not scripted, you do not have to plan for them. All you need to do to qualify is be a stroke survivor, or care for someone who is a stroke survivor, or be one of those fabulous people that helps stroke survivors overcome deficits and get better.
Bill Gasiamis 1:15:58
So basically, you just have to be involved in stroke some way shape or form to get on the show. If you go to recoveryafterstroke.com/contact, you can fill out the form and as soon as I receive it, I will respond with more details on how you can choose a time that works for you and me to meet over zoom. Now thanks again for being here and listening. I really appreciate you and see you on the next episode.
Intro 1:16:26
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. The opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.
Intro 1:16:44
All content on this website at any linked blog, podcast or video material control. This website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis, the content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.
Intro 1:17:06
The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content.
Intro 1:17:28
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Intro 1:17:48
While we aim to provide current quality information in our content. We did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide however third-party links from our website are followed at your own risk and we are not responsible for any information you find there.
The post Thunderclap Headache and Stroke – Georgie Hennah appeared first on Recovery After Stroke.
Peter Cass lived with Atrial Fibrillation which caused a stroke at age 60. In our interview, we discuss his journey and how his recovery is coming along 5 years on.Facebook
Highlights:
01:27 Introduction
02:20 Stroke And Atrial Fibrillation
08:07 Prescription Medication Caused The Stroke
14:49 Peter Cass’s Post-Stroke Deficits
23:47 Vision Problems After The Stroke
30:05 Stress-Related AF Instances
40:55 Post-traumatic Stress Disorder
48:35 The Emotional Recovery
56:14 Restoring the Gut Walls Could Help Save Brain Function After Stroke
1:04:20 Recovery Rate
1:12:09 Rest Management
Transcription:
Peter Cass 0:00
This neuropsychologist, she said, Has anybody ever talked to you about post-traumatic stress disorder? And I looked at her like are you crazy? I’m not a Vietnam War vet. I wasn’t in Afghanistan, having to deal with IEDs the whole time. She said, when you have a stroke when you have a heart attack when you have something like that, it’s a trauma it’s a significant trauma, and you need to do things in a therapy that also helps you cope with that trauma.
Intro 0:38
This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.
Bill Gasiamis 0:50
Hello, and welcome to episode 226 of the recovery after stroke podcast to learn more about my guests, including their links to social media and other pages and to download a full transcript of the entire interview, please go to recoveryafterstroke.com/episodes.
Bill Gasiamis 1:08
If you’d like to support this podcast, the best way to do it is to leave a five-star review and a few words about what the show means to you on iTunes, and Spotify. If you’re watching on YouTube, comment below the video, like the episode and to get notifications of future episodes, subscribe to the show on the platform of your choice.
Introduction – Peter Cass
Bill Gasiamis 1:27
My guest today is Peter Cass, who had a stroke that was linked to atrial fibrillation. Five years down the road to recovery, Peter has had to overcome much and is getting help with anxiety as well as emotional recovery from stroke. Peter Cass, welcome to the podcast.
Peter Cass 1:46
Thank you very much Bill. Nice to be here in virtual world, so to speak.
Bill Gasiamis 1:51
Nice to have you here all the way from Switzerland. What time is it there now?
Peter Cass 2:00
It is just after nine o’clock in the morning.
Bill Gasiamis 2:04
Okay. And here, it’s 7pm on Thursday. And that’s quite a time difference.
Peter Cass 2:12
Certainly is, it’s a lot of fun when we do projects in Australia.
Bill Gasiamis 2:16
Tell me a little bit about what happened to you.
Stroke And Atrial Fibrillation
Peter Cass 2:20
What happened to me was, it’s the beginning of 2017, I was diagnosed as having atrial fibrillation. And as you know, if you have that, your chance of having a stroke is increased by fivefold, I think something like that. So I was given some regular medication.
Peter Cass 2:43
And in March 2017 on a Monday lunchtime, I just started to feel really bad. And noticed that my atrial fibrillation was bad and my heartbeat was all over the place. So I drove home, excuse myself, and thought that the rest would sort that out.
Peter Cass 3:08
The following day, on a Tuesday, I spoke to my GP. And he then spoke to the cardiologist, the local hospital department that was dealing with me. And he said, there’s a possibility that we can give you what’s called a pill in the pocket, which is a medication that will you know, break the cycle with your AF and bring you back to normal.
Peter Cass 3:37
So he said, Okay, come in tomorrow, and we’ll sort that medication out for you. So I went in, in the morning, took the pills home with me and took the pills. But I was still kind of you know, working from home, so in the afternoon of the Wednesday I was actually hosting a web conference and suddenly I’m looking at the screen and I can’t see the cursor when my mouse cursor is moving to the right when I was presenting.
Peter Cass 4:07
And my first reaction being an IT person was thinking oh, the driver’s messed up or something doesn’t work. So I didn’t really you know, think about it. And then the meeting finished and I really noticed that I couldn’t see so well without of my right eye.
Peter Cass 4:26
So I sat down, had a rest and I thought to myself this is interesting because I know these tablets that I was given and taken strong. So I just took it easy really. mate of mine was coming around to watch the Champions League. So I decided that beer wasn’t on the menu for me that night if I was feeling a bit dizzy.
Peter Cass 4:53
And when he came around, I got him to read the instruction of the leaflet that comes with the drugs which is printed so small, it’s hard to read, and I really couldn’t read it. Though my eyesight is pretty good. So he read it, and he saw that it said, you could have as a side effect blurred vision, and you could also have slurred speech.
Peter Cass 5:19
So I didn’t think too much about it. The next day, I called the doctor and I said, now I’m having these problems. Do you think it could be the side effects of the medication or something else? And he said, that sounds like the side effects of the medication. And he said, then on the following day, if you’re not feeling better, then come to the office, I won’t be there but someone else could look at you.
Peter Cass 5:46
And my wife at lunchtime said to me, you know, your speech is slurred sometimes. And I speak two languages. Obviously, mother tongue is English, but I’m also speaking German. And with her, I speak English and her English is very good. And I thought, yeah, this is interesting. I’m really looking forward to going to the doctor the following day, which I did.
Peter Cass 6:15
And I was seen straightaway, saw another doctor who did some tests with me, you know, the typical stroke, things like balance and that kind of thing. Right! You’re going to hospital now to emergency I think you’ve had a stroke. And of course, in my mind, I’m thinking stroke, you know, half the body on fire, terrible pain, all these other things, because that’s my kind of layman’s knowledge at that point of what a stroke is like.
Peter Cass 6:43
So I’m thinking, how can I? I can’t have had a stroke, that cannot be that I had a stroke. So I went to the hospital. And I had a scan. And then the neurologist showed me the damage on the pictures. And indeed, I had had a stroke, probably on the Wednesday after I took those tablets.
Bill Gasiamis 7:10
Wow. So how old were you at the time?
Peter Cass 7:15
How old was I? I’m 65 now, so I would have been 60.
Bill Gasiamis 7:22
Are you doing in your mind after that amount of days elapsed when you finally found out? Are you kicking yourself? How are you responding to the fact that you waited so long to do something about it? You’re giving yourself a hard time. How does that go?
Peter Cass 7:41
I think I was giving the doctors a hard time. The first opportunity, of course, I said to myself, well, I should have insisted on going to the doctor earlier, as soon as I had those symptoms, but, you know, you tend to trust healthcare professionals. And I thought, if he says this is a possible side effect, and then it probably was.
Prescription Medication Caused The StrokePeter Cass 8:07
And of course, actually, I met the cardiologist some months later. And he knew when I walked through the door, I was going to ask him, I said, could the medication you gave me has caused the stroke? And his answer was in German, of course, but it’s basically, Mr. Cass, you were very unlucky because on very rare occasions, this drug can actually cause problems and loosen up, let’s say an embolism that you have in your heart. So I would say the likelihood, which is positive and negative, was that the medication caused the stroke, but I would never get that from the hospital or from the cardiologist.
Bill Gasiamis 9:01
In hindsight, do you wish that they had said that and you think that would have made a difference in your decision to take the medication? If they’d made you aware of that potential risk?
Peter Cass 9:15
It would have been a consideration. I mean, if I believe what I’ve read afterwards about that drug, it is a very, very rare occurrence, you know, less than one in 1000. So everything is a gamble, when it comes to it, especially with medical treatment and with medication as you know.
Peter Cass 9:34
I tried to keep myself informed. I’m probably a pain in the rear end for doctors because I have worked for pharmaceutical companies years ago. So I consider myself to have quite a good knowledge level. But yeah, maybe I’d have havening I’d have thought about it. But I guess at that point in time a stroke was a million miles away from my thoughts, you know, it wasn’t really something that I could consider would happen.
Bill Gasiamis 10:06
Had you ever known anybody to have had a stroke?
Peter Cass 10:11
Actually, no. And of course, the funny thing is, well not funny,but in the last five years, you start to network with people, actually, a very good friend of mine has had a very, very bad stroke. So I thank myself, I’m grateful every day, of course, that I didn’t have anything serious.
Peter Cass 10:35
However, on the other hand, what I feel is that, you know, a lot of people who have long lasting physical problems as a result of having a stroke. You know, it’s much more serious. But when you have one of these silent strokes, the problem is no one understands it.
Peter Cass 10:54
Because, you know, when I called at work and said, You know, I’ve had a stroke, and it was like, can you walk? You know, and when people came and visited me in hospital, I’d go and walk to the coffee area with them. And I think they found it hard to believe I’ve had a stroke.
Peter Cass 11:09
And to be honest, in the beginning, before I understood more about it, I found it very difficult to believe that I’ve had a stroke, because I’m in hospital in the stroke unit, you know, wired-up, monitored and everything. And besides a few problems with my heart and my blood pressure, I didn’t feel you know, bad.
Peter Cass 11:29
I felt like a fraud, if that makes any sense, you sort of thinking, well, you know, it has, this really happened. And, of course, the evidence was there that it had happened. And then I started to notice what the problems were at least in short-term.
Bill Gasiamis 11:44
Yeah, well, I can completely relate to that part. So my first incident was a bleed in the brain. And it took seven days for me to go to the hospital. And I was walking differently. And my wife noticed that and she told me about it, and I ignored it. And my chiropractor told me and I ignored it. But when I finally went there, and they gave me some medication to decrease the inflammation in the head, I was up and about and walking normally. And you couldn’t tell I was in my football gear.
Peter Cass 12:20
When you say football, which kind of football? Because you have so many different types.
Bill Gasiamis 12:25
Round the ball. And of course, I wasn’t in boots or anything, but just shorts and a T-shirt and running shoes. And then people would come to visit me and I would be down with them in the cafeteria. And I’d be walking all over the hospital telling them what they’re doing to me and all that.
Bill Gasiamis 12:48
And people you could tell they couldn’t compute it, because there was no visible signs. And I was being told constantly stay in your bed, Do not wander around the hospital, by the nurses, the doctors, they kept looking for me, they kept trying to bring me back. But I just didn’t feel like I needed to be there.
Bill Gasiamis 13:06
And I didn’t realize how serious it was until six weeks later, when I was supposed to go to the follow up appointment a day before I had another bleed, which was a little more catastrophic, a little more dramatic, where it was at the point where I didn’t know who my wife was, I didn’t know my name.
Bill Gasiamis 13:25
So I had a long winded recovery from that portion of the bleed. And the other thing with me was they never called it a stroke, because it was an arteriovenous malformation, which is technically a tumor, which is inside your head, which bled, it’s technically not an ischemic stroke, and it’s not an exact hemorrhagic stroke.
Bill Gasiamis 13:52
So for many years, they actually didn’t call it a strike. And I wasn’t traded by the stroke department, if you like or wasn’t in the stroke ward. And, I couldn’t relate to anybody because I didn’t know where I fit in. I had all the neurological symptoms that stroke people had, I had fatigue, I had all these things, the first time I realized that, I could say that I had a stroke for lack of a better label.
Bill Gasiamis 14:22
Was when I when I read it on the Stroke Foundation. Australian Stroke Foundation page, that I had a brain hemorrhage and they classify that as a hemorrhagic stroke. So when you’re saying you felt like a fraud. I felt like I was explaining myself to people who weren’t believing me who downplayed the seriousness of it. And I couldn’t convince them otherwise.
Peter Cass’s Post-Stroke DeficitsBill Gasiamis 14:49
And it was a really challenging thing to bring people on board so they can understand what neurological problems I was facing cognitively, emotionally, mentally, a whole gamut of issues, right? But I couldn’t get people on board. So what were you left with? When you were discharged from hospital? How long did it take to get discharged?
Peter Cass 15:20
Well, I was in hospital for six days. Of course, I’ve mentioned the vision problem. But within two or three days, I was still using my iPad, I was using my phone, sending texts and things straight away. But the right half vision on my right side, it was like someone just cut the screen about 20%. And that last 20%, I remember watching football.
Peter Cass 15:49
And whenever the ball got played, from the left to the right, I was having to turn my head to follow the ball. You know, it’s normally you sit in front of the TV. And so there was definitely a vision problem. What I began to realize forever soon after, and I didn’t hear about aphasia for probably two years after my stroke, was that I was writing sentences, in text or whatever, missing out words using the wrong words.
Peter Cass 16:21
And that became very apparent. And also, I was struggling sometimes to read. I’ll give you an example, I was probably two days in, I was reading the BBC News on my phone. And I came across a word, which I didn’t understand. And that word was M A, R, C, E, L. Marcel. It’s a person’s name, a very common name here in Switzerland, actually.
Peter Cass 16:48
And I found myself reading M A, R, C, E, L, what does that mean? M A, R. C, E, L, about the third time, Marcel. And then I realized I had problems with certain words, let’s say where the pattern is, you know, when we read, we don’t really look at every letter. So through, thought, trough words with similar patterns, I was having to think consciously about the context of that word, if I was reading something and which word it was.
Peter Cass 17:27
Which is completely stupid when you think about it, but then I realized that, you know, the linguistic center of my brain had been affected, and it still is today. So if I write an email, I will check it more than I used to, I think anybody who doesn’t check what they write is an idiot sorry. So you should check it at least once.
Bill Gasiamis 17:50
Thank you.
Peter Cass 17:52
But, you know, I found myself checking it three times, when I look back at some of the texts I sent, which I still got WhatsApps on my phone. When I was in hospital, I’m surprised at how few errors there were actually, but missing out a word completely.
Peter Cass 18:08
And if I may, I’ll give you a bizarre example. Later, when I was back at work. We had decided to give me less responsibility in the business and to hire a successor because I’m just about now going to retire fully. And we had a meeting with our I’m in it, and we do software projects, we implement software throughout our companies.
Peter Cass 18:37
And I had to introduce the guy who was taking over my department. And his name is Maxim. And I introduced him as Sasha. Now, I know two Sashas, they don’t look anything like him. Totally bizarre, where the hell does that come from? And people looked at me like, really weird, you know, are you drunk or what’s going on?
Peter Cass 19:05
And then we had a good laugh. And actually very kindly, he adopted Sasha as his nickname. So we know him in the company that people that work closely to him refer to him as Sasha. But it was just bizarre things like that. And that still happens, I will use the wrong word. And have no clue. So I left the hospital with a vision problem and an awareness that I had these linguistic problems.
Peter Cass 19:39
All the tests I had, I passed quite well in mathematics, and you know, on screen testing and eye coordination, everything was pretty good. But I left hospital after six days with still a vision problem. And with this linguistic problem, and vision got better After two or three weeks, but the linguistic problem is still there, from time to time, Fred Oh, sorry. It’s Bill.
Bill Gasiamis 20:11
Yeah, I understand, I got left with. I struggle with wear, where, and ware? Yeah. And sometimes I can spend way too long on trying to work out when to use which word. And then other times, I won’t spend any time on it. And I’ll completely get it wrong. And I’ve done that a fair few times on Instagram where I ask questions of people. And I’ll use the wrong (where), and then I’ll post it. And then my wife will notice it after I’ve posted it. But 10 people have responded to my question. And then I can’t take it down I’ve got to leave it there.
Peter Cass 20:48
Yeah, sure. And I think the other thing is that in today’s world, especially with AutoCorrect, which probably you should switch off because the AutoCorrect, I wrote someone the other day and didn’t notice, in a WhatsApp, I basically wrote a sentence that was pretty much nonsense, or didn’t understand, and I wasn’t careful enough, checking it.
Peter Cass 21:17
So then there are some things also long-term, which could possibly be a result of having a stroke, where no one’s really willing to sort of nail it down and say, that’s absolutely because you had a stroke. And that is when I go walking. Or when I went walking originally, and the back of where I used to live was very nice hills and woods, go up there. And I started to be more breathless.
Peter Cass 21:49
And then they did an angiogram. And I think the cardiologist in my hospital had to go somewhere else for the angiogram, for whatever reason, the cardiologist in my hospital, thought that, you know, he’s going to find clogged arteries, and that we’re going to put a stent in or something straightaway, actually, it turned out that I was in quite good shape, much to my surprise and amazement for someone who’s overweight.
Peter Cass 22:15
At that time, still middle aged. But they didn’t really find anything wrong. And the cardiologist at that hospital, said to me, he’d had a number of stroke patients who had similar experiences, where he believed it was to do with the dilation of the capillary arteries in the lungs, and they needed some help.
Peter Cass 22:39
So that you didn’t get breathless, and I’ve had medication since then. And sometimes, for no apparent reason, this kind of, you know, challenging breathing, pops up. But my rehab lady really showed me some deep breathing exercises that helped me get more oxygen, even when I’m walking around, you know.
Bill Gasiamis 23:05
So, a result of the stroke, it’s impacted your ability to take a proper breath. Is it a neurological issue?
Peter Cass 23:16
I think that no one knows. And I wouldn’t say that I know better than the doctors. If you ask one cardiologist he would say basically, that’s rubbish that that could have impacted that. And asked him the other cardiologists was the guy who suggested it to me. And I found that there’s a lot of research, interestingly, there’s research in Australia about it, to try and measure the correlation between these kinds of breathing difficulties afterwards for people who’ve had strokes.
Vision Problems After The Stroke And Atrial FibrillationPeter Cass 23:47
So, again, you know, and I think I mentioned to you once we were chatting, I recently had my prescription changed on my right eye. And I’ve always felt that since the stroke, I didn’t see so well in the right, which was the one that was affected immediately. And actually, the strange thing is when the opticians measured it or the eye doctor measured it didn’t find really anything wrong until recently, when they said yeah, there is a weakness there. And we have to change prescription.
Bill Gasiamis 24:21
Yeah, I know that it we can’t blame everything to the stroke and it might not be related. The interesting thing though, is that well, the heart is part of the autonomic nervous system in that it beats kind of independently of us. It doesn’t really need us to be it beats on its own, however, you know, communicates with the rest of the body and then there’s a part in the brain that creates communication between the brain and the heart and that kind of says, you know, okay, we’re beating and do that and if that part of the brain is damaged or is not there anymore.
Bill Gasiamis 24:59
Then the heart stops. And that’s, you know how, for some people, you know, brain challenges, whether they are ischemic or hemorrhagic strokes can cause the heart to stop. So, to me, it kind of makes sense that there is a plausibility to your condition that it might be related, but at the same time, we don’t know, maybe it doesn’t matter if we know or don’t know.
Peter Cass 25:26
This is exactly what the cardiologist said, you know, all these things be linked together, and you could have an impact. And we just like, I will never know whether the medication really caused the stroke or not, I will probably never know about the other things.
Bill Gasiamis 25:45
One of the things about medication I know with a lot of my female guests I’ve had on the show, or who have been taking the pill, the, you know, for a few a few times, you know, for medical reasons, yes, some of the ladies are taking it for, you know, birth control reasons. And, often, and they’ve had a stroke, for example, and then often, they later learned that the birth control medication can potentially put women at greater risk of ischemic stroke. And all of them will go back to their doctors, if they ask the question, you know, the doctor says, look, it’s a risk, you know, it’s a very low risk and all that. But again, they just rule out the possibility that it was that or definitely that, or something else. We’re talking about young women who are having ischemic stroke.
Peter Cass 26:46
And let’s be honest, if if you read every leaflet that comes with every drug that you’ve ever taken, you’ll never take anything, and you know that there is going to be a risk of side effects. And it’s not like the nasty drug companies are making things to make you ill or have strokes. It’s just a fact that everybody’s different. And like you said, we’re totally interrelated. All these systems in the body. And, taking medication or a combination of medications can cause problems.
Bill Gasiamis 27:24
So what was the hardest part of this stroke journey for you to experience?
Peter Cass 27:32
I think, the thing we’ve already talked about the fact that other people don’t understand that there can be strokes that are less dramatic, that was difficult for people to understand. And like you’ve mentioned, you know, you have to explain to people what it is, and you have the feeling that they don’t treat you the same as they probably would, if half of your body was paralyzed.
Peter Cass 27:59
So we’ve discussed that, I would say the other thing is, you know, like the anxiety, because, you know, it could happen again, I can remember the first time I went home, I had great difficulty in going to sleep, because I thought I would just would never wake up again. And that anxiety stays with you.
Peter Cass 28:24
Tried to address that to a certain extent, by having some therapy and learning to do yoga nidra to on a regular basis to you know, help you relax and whatever. I think fatigue is is one thing, and also probably coping with stress. I gave up some responsibilities was, which was exactly the right thing to do.
Peter Cass 28:50
I have still a lot of responsibility. But, you know, I found I couldn’t deal with stress. And it’s interesting that since the stroke, I’ve had three instances with bad instances with atrial fibrillation, where I’ve had to have a cardioversion, which is they put you out, put a defibrillator on special one and give you a shock, kick everything back.
Peter Cass 29:16
And the first time I had that done, of course, I was terrified when I had experienced it and had it repeated, you know, I was comfortable with it. But you know, those instances could happen. And you know, when those instances do happen, that then possibly it would, you know, create the right circumstances or conditions to have another stroke.
Peter Cass 29:42
And the interesting thing is those three instances, they have always been kind of stress-related. One was the day that we moved apartment. Another one was on a very rough flight from the UK back to Zurich. Really bad turbulence and I was sick, had some sort of fluid type thing.
Stress Related AF InstancesPeter Cass 30:05
And so mostly the the AF instances were related to stress. So I haven’t had one now in three years, but they adjusted my medication. But again, you know, these things are all linked. So you’re thinking, if you have one of these instances, you’re thinking, you know, now I’m prime territory for a stroke again.
Peter Cass 30:27
So of course, that’s very worrying. But I’d summarize in fatigue, coping with stress. And these long term linguistic limitations or instances, I think, it’d be very helpful to talk to other people in support groups and read other people’s experiences.
Peter Cass 30:52
Because that helps you also understand, you know, you’re not alone. And there’s lots 1000s Millions of people around the world who have same experiences. But yeah, I think I’ve also changed certain things in the way I behave. Probably kind of quite a while I think I’m probably quite a direct person, and also a chatty person tend to talk too much. But I, I would say I don’t suffer fools gladly.
Peter Cass 31:22
If I see a situation in a conversation in a business or in a meeting, and I see that someone is stressing me out, because we’re discussing something for the 50th time, then I tend to be less tolerant, and just say, Come on, look, we’ve discussed this enough, let’s make a decision. Let’s move forward. And I think my threshold, if I’m allowed to say, my bullshit threshold has changed, it’s a lot lower than it used to be.
Intro 31:50
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind, like, how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, doctors will explain things. But obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 32:15
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called seven questions to ask your doctor about your stroke.
Intro 32:34
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery, head to the website. Now, recoveryafterstroke.com and download the guide. It’s free.
Peter Cass 32:54
You could say that I’m less patient, perhaps. But I just realized every minute that I live is valuable. And going round and round in circles in a business context is not valuable. Let’s get on with it. And let’s make decisions. And yeah, so that’s affected me a little bit. I think in the way I conduct meetings, because I have to conduct a lot of meetings.
Bill Gasiamis 33:21
What kind of level is your role?
Peter Cass 33:28
Well, when I gave up some responsibilities, the responsibility I gave up was people management. So I’m a program manager, I have several teams working for me. But they’re not people that work for me, in a line relationship, people from different teams.
Peter Cass 33:47
So I’m coordinating those projects, and guiding people see something going off track, and also have net responsibility. We have steering committees with members of our board. So yeah, but I don’t know whether that’s also getting older and closer to retirement that you tend to say things that you perhaps wouldn’t say in front of board members 10 years or 15 years ago when you wanted to keep your job with the company.
Bill Gasiamis 34:21
Get some feedback from the doctors see what they think maybe it’s linked maybe it’s not linked to stroke.
Peter Cass 34:25
Yeah exactly. But I think it’s just you want to get on with things and you want to keep things straightforward, and focus. And, of course, you have to do that because you’ve had a stroke. I don’t know whether you’ve found that you have to focus more. When you do something. You know, your attention span can be a problem. Your mind can come wander so you want to try and because of that you try and keep everybody else focused and I don’t think that’s necessarily a bad thing.
Bill Gasiamis 34:59
It’s definitely all about resources and energy and the lack thereof. And the there’s not an infinite amount of it. And I get short towards the end of the day, because towards the end of the day, I’m running low on energy. And it’s very different to what it was before my bleeds.
Bill Gasiamis 35:20
Until then I could go on and on and on. And after that I couldn’t, I had a Alea wall that I would hit. And when I hit it, it was just lights out. So if I needed to get stuff done, and you’re fluffing around, in and getting in my way to get that stuff done, before I hit the wall, then I didn’t want you to be in my way, I did want to hurry you along, I wanted you out of my way.
Bill Gasiamis 35:46
And I wanted to get to my destination so that when I did hit the wall, I could sit down, rest, recuperate, and get ready for the next day. So a lot of other stroke survivors report that they don’t suffer fools as much as they would have previously.
Bill Gasiamis 36:06
And they also report that whole Well, perhaps that lack of patience, but I think it’s more fine tuned than being impatient. I think it’s them being totally aware of the fact that they’re running out of resources, and you’re, and that interaction is chewing up valuable resource, and I need to keep moving.
Bill Gasiamis 36:31
And I think the more we get better at talking to other people about our stroke and telling them what happened to us and how we’re different compared to them, or how it’s changed. I think we could get away with decreasing the amount of time it takes to get to the next part of the conversation. And people, most people will come on board, and they’ll appreciate that. But if you’re also coming across differently, and people are experiencing differently that might set other people off to think oh Peter’s being a bit of an ass.
Peter Cass 37:06
Yes, absolutely.
Bill Gasiamis 37:07
Did you get any of that pushback? Did people misinterpret your lack of well, time with them as you having changed as a result of your stroke?
Peter Cass 37:24
I think that, you know, incidents that I can remember very clearly was that of course, I’m talking in two languages. So if I’m talking in German, maybe I have more of a struggle to find a word. But I have people finishing sentences for me. And that just really annoyed me and pissed me off to be honest.
Peter Cass 37:47
And I remember saying once to quite senior people, hey, please just give me a few more seconds to think and process. Don’t finish off my sentences. But I know that the bad habit I had before the stroke was sometimes finishing off other people’s sentences, not people who have had strokes.
Peter Cass 38:08
So yeah, I think fundamentally, you’re not changed. And I have to say, this may sound weird, but there are some benefits. Because I found when I had the stroke and was going through recovery, I learned from the professionals that I was working with, but also from studying and reading much more about the way that the mind works.
Peter Cass 38:36
And that was a curious thing. But we never really we take it for granted. And suddenly you start to think more about mind, and emotions and that kind of thing, and how that’s all connected. I don’t know whether other people experience it.
Peter Cass 38:55
But right after the stroke, I found that my dreams, I was very often dreaming about my late childhood formative years. You know, they talk about when you die your life flashes past before you. And it was almost like when you have some kind of trauma, that you have a similar thing and you dream about when you were younger.
Peter Cass 39:17
And I think one thing is very important was when I think during the pandemic, I said to my doctor, I said, look, I’ve had no assessment. I’ve had no follow up. I had nine months of going to a rehab place. We’re lucky to have a very good one close to us. People come from all over the world. 7:30 on a Monday morning, I went there on my way to work, spent an hour with my therapist.
Peter Cass 39:45
She was excellent. And suddenly at the end of the year, it’s like okay, now with health insurances. you’ve recovered. I don’t you don’t need that anymore. And then after a couple of years, I was asking my doctor hey, isn’t someone gonna do some kind of assessment to see what’s going on.
Peter Cass 40:06
And he sent me to a psychiatrist who the first meeting said, I can’t believe they haven’t done an assessment on you. And he sent me to a neurophysiologist. And I spent the day with her doing all these kinds of tests. And what was encouraging, because I had a kind of benchmark, you know, she said a lot of things for your age, you’re better than average.
Peter Cass 40:28
There’s a lot that’s in the zone for your age. And there are one or two things like particularly hand-eye coordination, which I’ve never been good at which scores are a bit low. But that gave me kind of a benchmarking. Because I think it’s very difficult for you yourself to judge, you know, where you are in the journey. You need something to hold up, you know, like a map and say, Okay, I’m there, and they’re in there.
Post-traumatic Stress DisorderPeter Cass 40:55
And that was really useful. But this neuropsychologist, she said, has anybody ever talked to you about post traumatic stress disorder? And I looked at her like, Are you crazy, you know, I’m not a Vietnam war vet, I wasn’t in Afghanistan, having to deal with IEDs the whole time. And she said, when you have a stroke, when you have a heart attack, when you have something like that, it’s a trauma, it’s a significant trauma.
Peter Cass 41:26
And you need to do things in the therapy, that also helps you cope with that trauma, which is actually how I ended up doing yoga nidra, she sent me to someone to do wellness based stress reduction. And she said, people who have strokes, people who have heart attacks, people who have terrible car accidents, there are a lot more people who are traumatized than anybody realizes. And so that was actually helpful to understand that. And that certain of these behavioral things were very typical.
Bill Gasiamis 42:07
My wife would say, after the second bleed, I couldn’t finish sentences, I was vague, a lot of the time I’d start a sentence and then not even know what I was talking about. I couldn’t type an email, I couldn’t do calculations. You know, there’s so many things that I couldn’t do after the second bleed. And I had I had a counseling session with my den psychologist.
Bill Gasiamis 42:35
And she said, has anyone suggested a neuropsychologist? And I said, No, I don’t know what that is. And it was because of her that I then went and asked for an appointment for Neuro Psych. And that’s the only reason why I got one and followed up. And like you, it seemed like, it wasn’t even worth mentioning to me, it wasn’t a priority for my doctors to allocate me one or to make an appointment for one.
Bill Gasiamis 43:05
But they also didn’t feel the need to tell me. And I’m not sure why that is because I clearly struggled with a lot of things after that second bleed and for many, many months, nonetheless, I went to the neuro Psych. And it’s exactly the relief that I got, I got to learn where I was at. And then I’ve got to be able to reflect. And my counselor, my psychologist would say to me, Hey, also, do you remember, when you came in last time, you couldn’t complete a sentence or you couldn’t do this, or you didn’t do that.
Bill Gasiamis 43:38
And now you’re doing that really well. And that might be three or four sessions down. So she was doing a lot of that reminding me of how far I’d come, as well as my wife and all the other people that were around me. But yeah, how do you know, I mean, and you also got a brain that’s dealing with stroke recovery. How do you know to be your own self advocate, but you do have to be your own advocate.
Peter Cass 44:06
You can’t just sit back and say, I’m surrounded by these people, and they’re gonna take me along the journey. You have to get the map and get the compass and point your feet in the right direction. I think one of the things that I’ve learned is that it was important for me to take over control of the recovery process, and not rely on other people. Now you could say, well, that’s a weakness with the healthcare or something.
Peter Cass 44:36
Healthcare is excellent in Switzerland. But you, it’s you, it’s your brain, it’s your mind, and you need to take control and talk to the right people and do things, but you also have to listen, you know, to your partner and close friends and people like that.
Peter Cass 44:53
Don’t push yourself. I don’t know. You know, a lot of people in groups. I was saying to someone the other day you I’ve never been a sporting person, though. I love sport, football. I used to coach it. I see people who have had a stroke. And suddenly they’re doing half marathons and marathons and swimming across the English Channel, and they’re doing all these kinds of stuff.
Peter Cass 45:20
And I understand that because doing these physical things is a confirmation back to them that they’re recovering and going in the right direction. But sometimes you think you just need to rest a little bit and relax and not do so much. And that’s sometimes the message I’ve had from other people. You know, my wife says that, you don’t have to do that now, you know, you’re not feeling that great, because I had a bad virus over the summer wasn’t COVID.
Peter Cass 45:50
And after that an infection, give yourself a break, give yourself time. You know, probably with the fatigue, like you mentioned later in the day, you can’t do so much. So schedule your key activities for the times when you you know you’re at peak performance. But give yourself a break as well. And I think we want to reassure ourselves that we’ve got back to normal or as close as we can, and probably we push ourselves too far.
Bill Gasiamis 46:19
Yeah, I couldn’t agree with you more. Look, I’ve interviewed people that become ultra-marathon runners, Episode 130, I interviewed Andy Robinson. And he got into ultra-marathon running so more than 40 kilometers in one day, and just absolutely thrives on it and loves it. And it’s where he finds his meditation time, is where he, you know, uses all the skills to overcome the pain and suffering that he’s feeling in his muscles.
Bill Gasiamis 46:53
It’s helping him mentally, physically, emotionally, and all power to him. But I tell you what, I could not think of anything worse now. Maybe Andy hasn’t got some of the deficits that I’ve been left with. So you know, running is definitely difficult for me, and I don’t feel comfortable running. So all power to him. But I felt like also telling Andy like, kind of just rest up a little more.
Bill Gasiamis 47:21
Maybe it’s helping him avoid things like post-traumatic stress. So maybe that’s why Yeah, some people are doing it. Because I know movement. And exercise really does help the brain overcome. Well help with the managing of post-traumatic stress disorder.
Bill Gasiamis 47:36
You know, I interviewed Dr. John King, for episode 162. And, you know, he’s somebody who deals with post-traumatic stress disorder, not because of a stroke, because of a different life experience. But he talks about the whole process of going through an episode and all the things that help him.
Bill Gasiamis 47:59
And he didn’t know how to deal with it, he didn’t know how to get help. He didn’t know what was happening. It ruined his life, it ruined his marriage, it ruined all those things. And slowly, he’s had to take control where he could and claw back to a life that was stable, to a job to all the things that normal, quote unquote, normal in somebody’s life. But again, he didn’t come from stroke to post-traumatic stress disorder.
The Emotional Recovery
Bill Gasiamis 48:35
But he had to be his own advocate. And he knew what he needed. He also had to have the courage to go and get the help. Because if they’re an emotional recovery after stroke, a lot of people won’t go and get help. I know men are less likely to get help than women.
Bill Gasiamis 48:50
And that’s the thing that’s going to help your recovery. I spoke about it in the last episode where I did a solo episode it’s part two of my, my solo episodes, where specifically I spoke about the possibility that if you missing out on the emotional recovery from stroke, then you’re missing out, in my opinion on 1/3 of the recovery that’s required.
Bill Gasiamis 49:18
Underneath emotions, you can put spiritual, you can put all sorts of different things under that bracket. But if you’re doing the physical recovery, and you’re doing the psychological recovery, or the mental recovery, and you’re changing the way you’re thinking about your life, and you’re thinking about, you know, the negative sides, and you’re thinking about the future.
Bill Gasiamis 49:38
If you’re able to bring that around, but then you’re not doing the emotional recovery, which is heart centered work, and you’re going to be kind of behind and if you’ve never done that kind of work, because you never thought you needed to do it. Well, here’s the time where you really, really need to do it besides struggling it’s gonna take To do more than anything, and it’s going to bring all those demons that we thought we had swept under the rug, it’s going to bring everything into the surface.
Peter Cass 50:09
Yeah, because I think the physical recovery is very measurable, you know, you have metrics, it’s very visible. And I think that emotional, psychological recovery is something that’s more elusive, it’s more difficult to pin down. And I think you’re absolutely right, you need to talk to people. You know, I can think of situations where I’ve had just lost it, you know, emotionally and burst out crying and whatever.
Peter Cass 50:38
And, my wife would say, What’s the matter? And I would just say something like, I just can’t cope at the moment thinking about that. Because, you know, you have these phases where you are weaker emotionally and psychologically. And yeah okay, I haven’t had too many physical deficits that I’ve really had to concentrate on. So I’m very fortunate in that sense.
Peter Cass 51:08
So I’ve had have concentrated on the other things. But yeah, I think it’s the recovery spans a whole lot of areas in your life, doesn’t it? And, you know, there’s lots of different aspects to it. And everybody’s different. That’s the other thing. I’m sure there are people who, who just said, Okay, get on with it, I’m more or less okay and that’s it.
Peter Cass 51:36
And there are other people like me who think about things a lot, you know, and think about, where am I? And is that linked to the stroke or not. And, of course, we don’t want to make our experience a crutch, an excuse for things. But I think it’s very important that the wider community has a better understanding of brain injuries. And that’s why, you know, I’m happy to come and talk to you.
Bill Gasiamis 52:12
Yeah, I appreciate that. And hopefully, the people that know you will listen to this and get a better insight as well. And that will be really fantastic. I wanted to ask you about your friend who, you know, had a serious stroke. How are you interacting with that person now? That you’ve been on that side of stroke. And he’s been there, where are you guys at?
Peter Cass 52:40
I’m not interacting with him really at all. Because his brother is interacting with his friends and social media and emails and stuff like that. Because as a result of his stroke, and I don’t know the exact medical condition, it’s kind of his 48 is brought on like an early dementia. So he’s not only had terrible physical problems, and he was like the guy who was running half marathons while he was living in New York.
Peter Cass 53:10
I think he even ran the New York Marathon. And he’s really been hit him like a railroad train physically, mentally, or whatever. So I react with his brother. He’s a Filipino, he happened to be home visiting when he had a stroke. So at least he’s with his family, rather than in New York. So I can’t interact with him directly. And that’s, of course, frustrating.
Peter Cass 53:37
But it’s nice thing was he went on Facebook a few weeks ago and wished his mom happy birthday. And that was the first post probably in nine months or something. So I hope that I’ve helped, you know, his brother asked me a lot of questions. So I’ve tried to support his brother with some some interaction there, because he’s really in a tough space, mentally and physically, and making progress but slow.
Peter Cass 54:06
And I think he’s brother appreciated, having someone to talk to or just ask, you know, how did this work for you? How long did it take? And then, of course, I had to say, look, it’s very different. And with your brother, and it’s really a lot more serious in many ways. And you have to just stick with it and encourage him and be positive.
Peter Cass 54:33
And I think that hasn’t been easy been months since it happened. But I hope that maybe in the future he’s able to communicate more, I would love to be able to support him in and have a call with him and just really help him more. But at the moment, that’s just not possible.
Bill Gasiamis 54:50
Sounds like he’s still in the very acute stage.
Peter Cass 54:53
Yeah, absolutely.
Bill Gasiamis 54:55
He might be able to come around a little later. The fact that I’ve had a stroke, and I can answer questions for family members of other people who have had a stroke, is really an amazing thing that’s come out of stroke for me, to be able to iterate to them, something that they cannot possibly understand in any way, unless they have a stroke, which we would prefer they never ever did is something that’s amazing for me.
Bill Gasiamis 54:57
And I really get a lot out of the interactions that I have with people who are desperate, who need some light at the end of the tunnel. And that’s what the podcast is about, it’s about shedding some light and giving people the before the middle, and then the after, and then the mutch after if that’s possible.
Bill Gasiamis 55:47
So that, you know, there’s, we can, we can offer hope. And then as a result of that, I keep receiving emails from amazing friends who say, Oh, I read this article, and it’s related to stroke recovery, you know, check it out, tell me what you think. And I just received one yesterday, and one of the ones I received that it’s from an organization called technology networks.
Restoring the Gut Walls Could Help Save Brain Function After Stroke
Bill Gasiamis 56:14
And they’ve got a subheading of neuroscience news and research. And it’s an online publication, and the article is restoring the gut wall could help save brain function after stroke. And I get encouraged, because now I hear about things and read things that are related to stroke, recovery and, and improving recovery after stroke via the gut, which is a part of stroke recovery that I’ve known about for quite some time, but there wasn’t a lot of research on.
Bill Gasiamis 56:50
So now I’ve got this group of people who know me, as soon as they come across something that’s stroke related, they share it with me immediately. And I get to increase my database of knowledge and get excited about the possibilities of this. So many people looking at stroke recovery in all these different and amazing ways. And these guys are a team of researchers at Texas a&m University School of Medicine.
Bill Gasiamis 57:22
And they’re pioneering research into the connection between stroke induced gut permeability or leakiness, and cognitive impairment. So what they’re finding is potentially that people who have a stroke also get impacted at the gut level. And many stroke survivors will report having constipation, or having some kind of an impacted bowel after stroke, and not realizing that the two are linked.
Bill Gasiamis 57:51
And then it also brings on gut permeability or leaky anus, which is exacerbated by gluten and casein which is found in milk and all sorts of other things. And now, we actually got the opportunity to support those people. Because a we have this information about a lived experience from stroke, of stroke.
Bill Gasiamis 58:18
And then we also have, I also have this beautiful network of people continuing to update me and inform me of things that I can share with other stroke survivors. So I’m going to make a link so that people can find this article, if they go to recovery after stroke.com/episodes. Find this episode. And then from there, they’ll be able to see the link and read the article. So I get that that’s the good part of stroke. And for me, stroke recovery.
Peter Cass 58:51
You reminded me of something that maybe I can share. You know, where you you have a stroke, you go into hospital, you cause you want to drink water until they know that you can swallow probably you don’t get anything? Well, during the pandemic, well, I’ve had a lot of throat problems. And during the pandemic, I went to see a specialist and he said, you know, the back of your throat where you have your vocal cords, the vocal cords are supposed to kind of fully close and they didn’t.
Peter Cass 59:29
And although at the time all the checks were done. Because that can be something that’s impacted by a stroke. And he said, well, you know, you had a stroke that could be as a result of that. So who would have ever thought that having persistent and chronic sore throats, which are related to the vocal cords could have been also a result of the stroke.
Peter Cass 59:57
So I went to like a therapist who deals with all this, you know, talking and singing speech therapists exactly, and went to her during the pandemic, which was very difficult because we’re doing all the exercises with a big screen. And then I found, for example, I can talk better, I played a guitar and sing for fun. And I found that also doing these exercises that my voice was stronger.
Peter Cass 1:00:31
So even two or three years down the line, maybe you trip up over something, and it could be related. On the other hand, you don’t want to say every time you sick every time something’s wrong, the stroke is to blame. But I think educating people like you just did you know, these problems with the gut and whatever. We don’t want to make them more hypochondriacs, but we want to make them aware that probably having a brain injury has a lot more peripheral damage than perhaps we’ve realized.
Bill Gasiamis 1:01:04
Yeah, absolutely. I mean, my brain was messed up by the blood clots that were in my head for nearly three years before brain surgery. And then it was fiddled with because of brain surgery, you know, that had to move, go into my head for about four centimeters deep, so almost to the cerebellum.
Bill Gasiamis 1:01:25
And that’ll go kind of behind my ear, and in there, on actually above my ear, and in and down and in. And they would have had to wiggle stuff and push stuff out of the way. I mean, it’s been physically it’s been handled and poked and prodded it makes sense that something that happens under conditions of surgery, that’s not at the spot of the stroke could impact, you know, the way that you experience your body afterwards.
Bill Gasiamis 1:01:57
I’ve had an eye condition, which I cannot describe, and an ophthalmologist can’t see it. But I’ve had this weird kind of flutter. In my eye that feels a bit strange. Pretty much since the brain surgery, and my entire left side is numb and I experienced it differently to my right side, it’s numb, it has pins and needles, it’s colder, it has more tension. So it’s kind of it has a little bit of spasticity, although you can’t see it anywhere.
Bill Gasiamis 1:02:32
And when my eye flutters, I just kind of put it off, I didn’t know what it was. And I couldn’t get anyone to explain it to me. And then one day only, only about five or six months ago, it occurred to me that it’s on the left side of my body where everything feels different. And if my eye feels different, that could explain it.
Bill Gasiamis 1:02:54
And there isn’t anything wrong with my vision or my eyeball, but it just makes this weird thing that I feel from time to time, especially at night. So yeah, it takes a while for things to sink in as well, sometimes that it could be related to the stroke. So I’m just I’m nearly 10 years out. I mean, I’m discovering these things all the time tomorrow. In Australia, it’s going to be Friday, it’s going to be the 25th of November.
Bill Gasiamis 1:03:27
And that is the day the anniversary of my brain surgery in 2014. So it’s been eight years, and I’m still discovering things that I’m going through. And on that note, not only am I discovering things that I’m going through that are related to the show, I’m also noticing improvements in my abilities, capabilities, my fatigue levels are decreasing, still, my energy levels are increasing still. So I want to share that as well, that eight years down after stroke surgery, more than 10 years since the first bleed, I’m noticing minor incremental changes for the positive you know.
Recovery Rate After Stroke And Atrial Fibrillation
Peter Cass 1:04:20
That’s fantastic. And I can remember at hospital the neurologist, told me one of the very frustrating things about having a stroke can be that you’re immediate recovery like my vision, I couldn’t drive straight away three weeks later, I did a test and I was able to drive.
Peter Cass 1:04:38
So right that weekend after you know when I was in the stroke unit, things began to improve. I started watching TV playing games and he said one of the frustrating things can be the rate of recovery will go from superfast. To very very slow. And that that can be frustrating.
Peter Cass 1:05:00
And you shouldn’t think as someone who’s had a stroke or brain injury, that it’s going to be like, you know the brain is rewiring itself like crazy in the first few days. And it’s not going to be like that. And I think it’s also important, like you just said, dwell on the positive as well and sort of say, you know, what is good? What can you do now that you couldn’t do maybe six months, two years ago?
Peter Cass 1:05:28
Whatever. Because of my age, you know, I’ve got the aging process going on. And that’s also a challenge, which you think, Well, you know, how much of this is just getting older, or if something pops up, you know, how much of it is to do with, with with getting older, and I think that’s, that’s also a challenge. And, yeah, of course, staying positive is, is very important. It’s not always that easy.
Peter Cass 1:05:59
I’m not a person who is really I remember years ago, when I was a salesperson in the UK, we all had to stand on the desk and say, we are the best sales person in the world. You know, it’s one of these rah rah rah all kinds of seminar events, and I just got down off the desk, and then the guy, the facilitator said, how you’re feeling.
Peter Cass 1:06:21
And I said, well, we can’t all be the best salesman in the world, you know, that’s mathematically not possible, unless we’re all equally the same. So, you do have to have a dose of reality, and be realistic. But having that positive mindset, it is also a battle to maintain that you’re going to have your good days, you’re going to have your bad days. And I think that that’s where we can gain support from the community. And people who’ve had similar experiences.
Bill Gasiamis 1:06:53
Yeah, to help bring you out of one of those difficult days, like positive mindset is not a permanent thing. Hopefully, a positive mindset is something that you do more often than not, but really recognize that it’s okay to not have a positive mindset as well, because you’re gonna go through the gamut of emotions and mindset feelings, and you got to go through it all, you got to have the ups and you’ve got to have the downs. And you got to find the balance somewhere in your own experience, because having a positive mindset all the time is not viable. It’s absolutely not doable.
Peter Cass 1:07:34
Causes you’re allowed to have a bad day as well. Sometimes you have a bad day, don’t do anything. You know, read a book, play guitar, listen to music, whatever it is, watch some crap movie. You know, give yourself a break. And you cannot maintain that level of positiveness. If it’s such a word, positivity. But you know, the whole time and if you try and persuade other people that you’re up there the whole time, come on, get real.
Bill Gasiamis 1:08:17
And that’s gonna set a false expectation. I know, there’s a lot of people that went back to work too soon that I’ve interviewed who pretended that everything was okay. And there was nothing wrong. And they really struggled to keep up appearances and pretend that everything was okay. And then only fall into a heap leader, you know, down the track.
Peter Cass 1:08:38
Yeah, I mean, I was back at work, from home 50% within two weeks, and then I guess, probably about after six weeks. it was a Monday morning, and I had my therapy. And then I agreed to meet my boss, we had a nice relaxing lunch somewhere in the shopping center.
Peter Cass 1:08:59
And then I went back in the office. And the difference I felt of being back in the office to working from home. I stayed there about two hours, and I went home. I could, and then I realized it was far too early to go back in the office. What’s nice about the home office, which we’ve all experienced during the pandemic, is that you can control things better.
Peter Cass 1:08:59
You know, at that stage, I was very vulnerable. Someone comes into your office, you have five minutes, Peter, and they’re there an hour and a half later, then you wanted to get on with something else. You were struggling to stay focused on a particular thing. What’s nice about the home office, as you can see this person is trying to call you on teams or whatever.
Peter Cass 1:09:46
And you can just ignore it and finish what you’re doing stay focused and then call that person back. Because I think that when you’ve had a brain injury, what’s very important is being organized certain patterns of doing things, they’re really helpful to you, at least I find that they’re very helpful to you. And you know, when you’re home office environment, you have much more control over that.
Peter Cass 1:10:18
Whereas, you know, you’re back in the office, and then, of course, especially because you have this invisible brain injury, then people Oh, I thought you were going to be sort of limping along or something like that. And then because people see that you appear to be normal, they interact with you normally, but you’re not ready for it, actually. And that’s, I think that’s absolutely important. You know, make these small steps going back into your work environment, don’t do it all at once.
Bill Gasiamis 1:11:00
Through just sheer ignorance, you know, I had those experiences oh you look fine. And it used to annoy me at the beginning listening to somebody say, You look fine. Well, I actually get know annoyed at that person for being ignorant about stroke and what stroke feels like, well, it’s like, come on, that I had to be okay with the fact that they were ignorant.
Bill Gasiamis 1:11:22
That’s how they were meant to be, they couldn’t possibly know what it’s like to have had a stroke. But I do love that opportunity that you had to do part of your transition back to work from home, in an environment that you could control, when you stopped for a quick rest, or when you were overwhelmed, or you can control the lighting the noise, you didn’t have to travel and therefore get fatigued in the just in the task of traveling to work and then having to try and find a way home. You know, that’s a really lovely transition back.
Rest Management – Peter CassPeter Cass 1:12:09
Yeah, yeah, you know, and we’re fortunate in our company, we have a quiet room, which has, you know, where you can lie down with your head slightly raised. And when I did go back in, I found that was very good. After lunch, to just be able to go there for 30 minutes, lie down, say meditate, you know, but just be quiet, not go to sleep, necessarily, but relax.
Peter Cass 1:12:36
And I found that really invigorated me to cope with the rest of the day. So I found I’ve kept that habit of having short, relaxing, breaks, or especially after lunch. And I even noticed that if I don’t have that after lunch, power, nap, meditation, break, whatever you want to call it. And whenever you want to do that I struggle then more as the day goes by.
Peter Cass 1:13:05
So I think it’s really good to do that. And I tell you, what’s, what’s great. doing that. And having that quiet time is usually where I get the best ideas and creative ideas or solving solving a problem. Suddenly, it will come to me Oh, yeah, we could do that.
Peter Cass 1:13:25
And, you know, I think we all rehearse things in our minds. We have a playbook in our minds, if something’s coming up a meeting or something like that. And those periods of quiet, especially, I think, if you’ve had a brain injury, are really valuable.
Peter Cass 1:13:43
They’re like recharging, but also, you know, you get a dose of creativity. I mean, I get my best ideas. When I wake up to go to the toilet, at three o’clock in the morning. I’ve always kind of had that. It’s weird, isn’t it? Because when you’re able to relax and you know, it’s usually then the best.
Peter Cass 1:14:03
I remember years ago, we’re reading about the Top UK businessman and he, someone said to him, in an interview said that you’re always on the golf course. He says whenever we say You know, you’re always on the golf course. He says, I have my best ideas on the golf course. If the people I’m having problems with play golf, I don’t play golf, I’ve given up trying to learn.
Peter Cass 1:14:24
He says if the people I’m having problems with play golf, we go out on the golf course and we solve those problems. So just changing the environment. And I assure you, you’re gonna say the same thing, just going for a walk in the forest, by the lake, on the beach or whatever, those things are so important.
Peter Cass 1:14:46
Or go for a walk around the factory at lunchtime outside, you know, those things are so important and anyway, but they become much more important when you’ve got a brain injury and I think by most of us have had that experience, you know, we value more, going for a walk, going for a walk, you know, looking at the woods, looking at the lake, whatever very important I think.
Bill Gasiamis 1:15:12
The benefits of exercise on the healing brain are just, I mean, I’ve written a whole chapter about it in my book. It’s just never ending when you could write forever about the benefits to the brain from exercise, and we’re talking about mild exercise, even if it’s not standing up, even from a wheelchair, you know, anything like that, really suppose the brain to recover.
Bill Gasiamis 1:15:38
With regards to what what I love is the applying kind of in my mind, I see the stagnation of being stuck in a problem. Usually, when there’s a problem. If you think about the physiology of most people, when they’re in the problem, they’re stuck, they’re scratching their head, they’re not moving, nothing is really turning over.
Bill Gasiamis 1:16:01
And then when you get them moving, and you get them actively, kind of getting out of their head, because now they have to do walking and paying attention to, you know, the path or the rocks or whatever, wherever they might be, then you’re getting out of the way of the brains getting out of the way of itself, and then allowing for things to start moving again.
Bill Gasiamis 1:16:25
And for those ideas to emerge or pop up wherever they are living, and to come into your awareness so that you can utilize them, I find that in the middle of the night, I get some ideas, etc. And you know how some people will talk about them, they’ll say they’ve got a piece of paper next to their bed, and they’ll write it down. I’ve never done that yet. So in the morning, I forget about them.
Bill Gasiamis 1:16:53
And, they’re gone. And sometimes they reemerge, they pop up. But usually I’m not cognitively awake enough to go, Okay, actually, what I need to do is go down and write it down. And sometimes, if I have gone and written it down, I’m getting, I get too excited about what I just realized. And then I can’t go back to sleep.
Peter Cass 1:17:16
Yeah, I’m a musician. And I write songs and play the guitar a lot. And after the stroke, probably only a week or so afterwards, I dreamt that I was playing with a band that I played when I was a teenager, or early 20s, probably more accurately. And I actually dreamt some words to a song. And I actually drempt a guitar riff.
Peter Cass 1:17:43
And I couldn’t be bothered to get up in the night and write that down. So I got up, it was still very present in my mind. But I was hungry. So I had my breakfast. And I of course forgot it. But what was interesting is, fortunately, it all came back to me about 10 minutes later, because I remembered enough fragments of it to do it, and then it came flooding back.
Peter Cass 1:18:08
And that developed into a song. You know, I mentioned earlier about dreaming a lot about my youth immediately after the stroke. So yeah, I think it’s creativity is very important. And whether it’s physical exercise, playing golf, playing a musical instrument, whatever it might be, those things are, of course, very, very important for the brain and also for the physical side.
Peter Cass 1:18:37
But you know, my first reaction to being told that I had a stroke was can I play the guitar or not a year before I injured my arm. And that was exactly the same reaction then. But you know, I was really concerned and I was thinking, okay, I can move I can, everything’s fine with my hands and whatever. But I was wondering, when I really start to try and play again, is something going to be limited or something I was very fortunate not to be but I think getting away from the normal environment is good.
Bill Gasiamis 1:19:11
I did an interview with Vinnie Valentino, very accomplished guitarist in the United States on episode 168. That’s a cool one. And he had an ischemic stroke. And then he struggled to get back into playing the guitar. He’s back there now. But he mentioned that he is not at his best and it doesn’t feel like he’s at his best like it was previously. But he’s managed to rediscover, you know, playing the guitar after the stroke and it was one of the things you’re worried about.
Bill Gasiamis 1:19:49
I also have a friend of mine who’s had a stroke who I met many years ago at the beginning of my journey, who actually was a guitarist and lost the ability to play guitar Because of the spasticity on, I think his left side or his right side, and then and then it took up playing the keyboard one handed. So you couldn’t really stop him from being a musician, he just evolved and adapted.
Bill Gasiamis 1:20:19
So they can still play in a band and they can still perform and write music and do all the things that he love to do he’s just doing it in a different way. Peter, thanks so much for coming onto the podcast. Mostly, thank you for reminding me that I had forgotten to get you on the podcast and to allocate time in my diary. And in my calendar. I say that because there’ll be people who reached out and want to be on the podcast, probably listening, who I forgotten to get back to or in amongst all the messages that I received, I missed out on getting back to somewhere.
Bill Gasiamis 1:21:01
So if you’re one of those people, and you’re listening, or watching, reach out, and let me know that I’ve forgotten. I’m very happy to receive your reminder. And we’ll do it. And we’ll definitely get on the podcast. In the meantime, Peter, I really appreciate your time and best of luck with your continued recovery. And thanks for choosing to be on here.
Peter Cass 1:21:25
Thank you very much. And I appreciate very much what you’re doing. You know, I stumbled across somewhere in social media, and I haven’t listened to all of your podcasts. But I certainly listened to some of them. And I think it’s very valuable. And I’m sure I’m not the only person who appreciates it. So thank you. And I would say good evening. Now I have to start working.
Bill Gasiamis 1:21:48
Yeah, enjoy. Enjoy the rest of your day. Thanks, Peter. Thanks for joining us on today’s episode, sharing the show with family and friends on social media will make it possible for people who may need this type of content to find it easier. And that may make a massive difference to someone that is on the road to recovery after their own experience with stroke. If you are a stroke survivor with a story to share about your experience, come and join me on the show.
Bill Gasiamis 1:22:12
The interviews are not scripted, you do not have to plan for them. All you need to do to qualify is be a stroke survivor or care for someone who is a stroke survivor, or you are one of the fabulous people that helped stroke survivors in their recovery. Go to recoveryafterstroke.com/contact fill out the form. And as soon as I receive your request, I will respond with more details on how you can choose a time that works for you and me to meet over zoom. Thanks again for being here and listening. I really appreciate you see you on the next episode.
Intro 1:22:44
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.
Intro 1:23:01
All content on this website at any length blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis. The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.
Intro 1:23:23
The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.
Intro 1:23:38
Never delay seeking advice or disregard the advice of a medical professional, your doctor, or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional.
Intro 1:23:52
If you are experiencing a health emergency or think you might be call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department medical information changes constantly.
Intro 1:24:05
While we aim to provide current quality information and our content. We did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide however third-party links from our website are followed at your own risk and we are not responsible for any information you find there.
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LeAnn Walton felt and heard the blood vessel pop in her head while teaching a yoga class. These days she is able to see the good that has come from a bad situation.
Socials:
Instagram: https://www.instagram.com/lee_ann_walton/
Highlights:
01:11 Year 2022 Mission
03:47 The Hemorrhagic Stroke
12:01 Perfect Time To Have A Stroke
17:11 Current Stroke Statistics
18:46 Unhealthy Lifestyle
26:49 Stroke Can Happen To Anyone
35:07 Learning Empathy After A Stroke
44:44 Post-Stroke Fatigue
1:05:05 Future Plans
1:14:50 Changes In Anatomy
Transcription:
LeeAnn Walton 0:00
When I was in the ambulance, going to the emergency room, I kept thinking I was having a dream. I think I was in shock for many months because I kept thinking, I’m going to wake up. And I know this is just a bad dream. I think the day that I realized what happened to me, I broke down and cried.
LeeAnn Walton 0:23
Because the severity of the situation, I really got for the first time, it has been a hard and challenging journey. And the first year, I tried to be optimistic. And then after the year, everybody said, Oh, you’ll get everything back. And after a year, I still walk with a limp, and it has affected my right arm and hand, I can’t really use it. I got really angry.
Intro 0:58
This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.
Year 2022 Mission Bill Gasiamis 1:11
Hello, and welcome to another episode of the recovery after stroke podcast. Recently, Spotify released a new feature which allows people now to rate their favorite shows similarly to how the apple podcast app allows it.
Bill Gasiamis 1:28
And since this is the last episode recorded in 2021, I actually recorded it on December 31. In Australia, I’d love it. If you would do me the honor of leaving the show a five-star review to end the year of in a bang, and to get it off to a good start in 2022.
Bill Gasiamis 1:49
My mission is to reach as many stroke survivors as possible that may need to hear the wisdom from the stroke survivors joining me on every episode. If this show has changed your life in some way, even if it was in a minor way, there could be people that may benefit from the interviews, just like you did, but they just don’t know that it exists yet.
Bill Gasiamis 2:12
So go to your favorite podcast app and share what the podcast means for you. It really will make a huge difference. Thanks in advance. And I look forward to continuing to support you in 2022 with a podcast or with coaching or in any other way that I might be able to help. I hope 2022 is full of growth and ongoing recovery. And I hope that you can set yourself some goals that are specific, measurable, achievable, and memorable. Leanne Walton, welcome to the podcast.
LeeAnn Walton 2:49
Thank you. It’s nice to be here.
Bill Gasiamis 2:53
Thank you for being here. All the way from New York, New York.
LeeAnn Walton 2:59
Yes, The Big Apple.
Bill Gasiamis 3:04
That’s a funny name for a city isn’t it?
LeeAnn Walton 3:07
I know, but you know, believe it or not, I think it’s because we actually have a lot of apple trees. Like in the borough’s I could totally be wrong. But I think that’s originally how we got that name like the Big Apple but I know people are probably going to be writing and go no, she’s totally wrong.
Bill Gasiamis 3:34
Well, until they do I’m going with that.
LeeAnn Walton 3:36
I’m sticking with it.
Bill Gasiamis 3:38
Or is it your stroke brain talking just making up stories?
LeeAnn Walton 3:42
Maybe it’s my stroke brain making up stories? I don’t know.
The Hemorrhagic Stroke
Bill Gasiamis 3:47
Tell me a little bit about what happened to you.
LeeAnn Walton 3:51
Well, I about three years ago on February 22, or almost around 5:15 pm I know that’s very specific. I was a yoga instructor and I was teaching my class I was finishing up my warm-up so that’s about 15 minutes cluster five.
LeeAnn Walton 4:19
And then all sudden, I had I felt like pop in my brain. But like one of those like really thick elastic bands I get that I felt like somebody like threw one of those at me because my head went back and I was like What the What happened?
LeeAnn Walton 4:41
And I stumbled over my student and proceeded to puke all over her. Not just once, but like and I was like, oh I’m so sorry.. And I couldn’t get back up. And whoever that student is because I forget I felt so bad but I had no idea what was going on.
LeeAnn Walton 5:14
I was trying to keep it together, because I didn’t want to alarm my students. And but I was in shock, because I had no idea what was going on. I was rushed to the hospital. And I went through, I had brain surgery, like 9-10 hours of brain surgery. For two days, I was really touched and go, they really didn’t think I was going to make it.
LeeAnn Walton 5:49
But I did. And the day that I was fully aware, and I woke up and, I’m in a hospital, like, what’s going on? How come my head like kills, and I have something hanging out of my head will somebody explained that, and it was my sister, she kept saying you had a stroke.
LeeAnn Walton 6:18
And I was like, wait, what? I had no idea what a stroke was. And I didn’t understand what a stroke was. I thought I was gonna go to acute rehab, and everything was gonna be fine.
Bill Gasiamis 6:38
Yeah, common misconception in stroke is that everything’s gonna be fine tomorrow rapidly overnight.
LeeAnn Walton 6:47
Exactly. And I remember where I taught, they told me like, how much time do you think you need off? And I was like, oh, I’m gonna be fine. In a month. I’ll be back teaching. And yeah, that didn’t work. Yeah, eventually I told them. I don’t know when I’m going to be back.
Bill Gasiamis 7:13
Yeah, a bleeding in the brain or a blockage in the brain, something like that, you know, hemorrhagic stroke or an ischemic stroke. It’s just not a broken leg is it? You can’t put a timeline on it. You can’t say it’s going to be done in six weeks.
LeeAnn Walton 7:33
Or even a year. Yeah with my stroke. They don’t know that the reason why I had it. They thought me blood pressure, but my blood pressure wasn’t high enough to burst a blood vessel. So I don’t know. But I am on blood pressure medicine, just, you know, just in case, and I get yearly MRI scans to just make sure that everything is okay with my brain.
LeeAnn Walton 8:09
I mean my brain gets a lot of action. I mean, CAT scans, MRIs cerebral angiogram, so, like, I you know, the cool thing about having a stroke was, I was like, introduced to the hospital scene, and like brain surgery, and I remember my neurosurgeon was like, we’re gonna put a camera in your vein is going to go up your arm and around your heart.
LeeAnn Walton 8:45
And then we’re going to take pictures of your brain at first, I was like, wait, you can do that. And that’s so gross. But the more that I learned about my brain and the things that they can do, I find it really cool now, but at first I was like wait what?
Bill Gasiamis 9:10
Doctors know stuff, they know.
LeeAnn Walton 9:13
And it’s actually really amazing what they can do now, I mean, because like, they just went into my major artery on my wrist. And, you know, the incision was, you know, you could barely see the incision. So, but I still have the dent from the drain. So and I think I told you before, it’s my new party trick.
LeeAnn Walton 9:40
Instead of doing cool yoga, crazy arm balances. I’m like, Hey, does anybody want to touch my ditch in my skull, on my head. And usually everybody’s kind of like, can I? And I’m like, Yeah, and then they go in. And they’re like, oh my gosh to do. I’m like, Yeah, I do. I have a ditch.
Bill Gasiamis 10:11
I’m the same, I tell people to touch the screws on my head do you want to touch the screws, do you want to have a feel of the screws, because when they did the, they removed the bone flat to get in to actually do brain surgery. And then they put the bone flat back, they actually screwed in place, or they tack it in place with something.
Bill Gasiamis 10:29
I don’t know what exactly right. So yeah, you can feel it. And on some days, they hurt like they make my head hurt my skull and my brain hit kind of thing because it gets cold maybe or something like that.
LeeAnn Walton 10:41
Oh my God Bill you are a badass. I mean, anybody who had a stroke is a total badass. But you my friend, you are a badass.
Bill Gasiamis 10:50
Yeah, it’s cool. It’s cool to tell people to touch the screws on your head, like, because then I can say I’ve got a screw loose and there’s a real reason. And then, you know one of the best things about my stroke was I was able to prove to my brother that I had a brain because there’s at least five people that saw it. And my brother didn’t believe until then that I had a brain because he always used to say to me grow a brain.
LeeAnn Walton 11:26
See, it’s kind of like I posted my cerebral angiogram photos. And so anybody could see what my brain looks like what it look like, before the stroke, when I had the stroke, and then after the stroke and then actually pulling to see my spinal cord and like the different blood vessels and like, it’s cool to me before I would be like, now I’m like, Oh my God, there’s my spinal cord.
Perfect Time To Have A Hemorrhagic Stroke
Bill Gasiamis 12:01
Yeah, it means something when it’s yours, when you’re looking at your scan, it means something for me. It was pretty strange to see a golf ball sized blood clot, you know, in my head far out, man. Like, that was just nuts. The fact that I could say or explain to me what it was what caused it take out what caused it? I mean, how lucky are we to have a stroke in the best time on the planet ever?
LeeAnn Walton 12:31
Yes. I mean, I tell myself that I am so lucky that I had my stroke three years ago and not during the pandemic. Even though when I did have a stroke nurses when I was in ICU, the nurses are like, you know, we might go on strike. And I’m like, wait, can you wait until I’m out of the ICU? And then you guys can go and strike. Just make sure like this thing is taken out okay? Then you guys can do whatever you want. Just please don’t leave your right now. But yes, I agree.
Bill Gasiamis 13:13
How long did you spend in hospital?
LeeAnn Walton 13:16
I was in the hospital for a month. And I actually feel because I was discharged from acute rehab. And I really wish what I know now, I wish I would have asked to complete the full two weeks of acute rehab. I want him to get out of the hospital. I was like, Yeah, give me out.
LeeAnn Walton 13:46
And I you know, and they said, Oh, you’re fine. You’re gonna you know. Yeah, and good luck. It’s what they told me. Actually, that’s all they told me like, it’s gonna be, it’s gonna be quite a journey for you and good luck. And I’m like that’s it? Don’t I get like a handbook or something? But you don’t get one.
Bill Gasiamis 14:14
Isn’t that interesting? In Australia, the Stroke Foundation has started trying to hand some kind of a guide some kind of a book to stroke survivors and their caregivers. So when they leave, they’ve got somewhere to start. Like they’ve got a little bit of an idea.
LeeAnn Walton 14:32
Well, I wish the states would do that. I mean, literally, the hospital was like, yeah, it’s a really hard, it’s gonna be really hard. Okay, and it was like, I had no idea I was like, until I started reading books and doing research on people who had strokes and the recovery.
LeeAnn Walton 14:57
But I was like, wow, I would have helped ifI knew this when I was coming out of the hospital, I really hope that the state starts doing what you guys do, because that makes complete sense.
Bill Gasiamis 15:11
Yeah, it’s funded by the Stroke Foundation. It’s not funded by the hospitals. But it’s something that they’re trying to raise money for. And every so often, they get some funding, and they go through this process of delivering these hampers, or books or something along those lines.
Bill Gasiamis 15:29
I never experienced that, because my stroke was February 2012, so quite a few years ago, but it’s a more recent thing, and just trying to get people informed about what to expect, who to call on, you know what some of the challenges might be, so that there’s less of a gap between the caregiver and the stroke survivor as to what’s going on.
Bill Gasiamis 15:51
So the caregiver doesn’t feel so overwhelmed. So the stroke survivor doesn’t feel so overwhelmed. And, you know, we can kind of bring people down from the cliff a little bit, you know, which is hard, even with the most information, but it’s, most people get exactly what you describe, that’s what I got, I got told that go home and, you know, kind of you’ll be right type thing.
Bill Gasiamis 16:20
And it’s like the trouble started, when I went home the complications got worse, because every time something happened, I was oh, my god, am I having another stroke? Or why am I feeling strange? Again? What should I do? Should we call the hospital should we do nothing?
Bill Gasiamis 16:39
And this constant not knowing made it really difficult to navigate? And we were over what we were doing, we were over cautious? And that’s a good thing. Don’t get me wrong. If you’re listening to this, and you’re new to stroke recovery and all that, and you’re over cautious, that’s okay. But it would be good to have some definitions, some explanations, something.
Current Stroke Statistics LeeAnn Walton 17:11
Yes. I mean, my team of doctors that I have right now. What they’re telling me is that more and more younger people are having strokes, especially women. And they don’t know why, which I think is really interesting. And also kind of scary.
Bill Gasiamis 17:35
I have a couple of theories.
Bill Gasiamis 17:38
What are your theories?
Bill Gasiamis 17:39
Lifestyle factors, mostly, it’s that we’re more stressed, more worked to the bone were less likely to look after ourselves, pay attention to all those things, we’re less likely to take care of ourselves, and we put ourselves out there for other people. We probably don’t eat as healthfully as we should there’s a whole bunch of reasons and we’re seeing the stats in Australia all over the world in fact, going up for stroke.
Bill Gasiamis 18:15
They say that the world stroke organization says that 95% of strokes are preventable. Which means that if that’s the case, 95% of them are being caused through lack of self care, in some way, shape or form. I mean, what was the reason that you suspect your stroke happened? I know a blood vessel burst, but tell me about your lifestyle before stroke.
Unhealthy Lifestyle LeeAnn Walton 18:46
Well, when I asked like what do you think? And you’re like, I think a lot of it is lifestyle like, gosh, yes, like I mean, I live in New York City, okay, I had a full time job. And I started teaching and I was getting a huge following. And my part time job became another full time job.
LeeAnn Walton 19:10
So I had two full time jobs, basically working 80 hours a week, stressed out but I had places to go people to see and I wasn’t paying attention to my body and I thought I was invincible. I can keep good so but I’m I’m a yoga instructor and nothing bad happens to yoga instructors and guess what?
LeeAnn Walton 19:42
Something bad can happen to yoga instructors and but I think the way that I was living and not listening to my body was trying to tell me slow down and slow down. Like take a break.
LeeAnn Walton 20:00
Say No, but I couldn’t at the time, it was so hard for me to say no, like, I can’t take on the class. I can’t do this. I can’t you know, I just, I wanted to please everyone. Now, it’s very easy for me to say no. Because before I couldn’t, but now it’s like, no. And if they like, push me, I’m like, I had a stroke No.
Bill Gasiamis 20:28
Yeah, it is a good excuse because it’s true. But as a yoga instructor, what was the point of being a yoga instructor? What did you hope to achieve from doing it?
LeeAnn Walton 20:45
Well, this is the interesting thing. When you’re a yoga instructor, you are teaching people to calm down, listen to your body connect with your body, you know, I was teaching all this stuff to people. And yet I wasn’t doing that for myself.
Bill Gasiamis 21:13
I’m gonna interrupt you for a second I have this theory about people who become life coaches, psychologists, and that kind of stuff. And I had a similar experience, because probably in 2010, was when I got my qualification to be a life coach, right. And when I got the qualification, I went through the course it took a year or whatever it took, I don’t remember how long it took.
Bill Gasiamis 21:38
And at the end of it, I was asked, What are you going to do now? Now that you’ve done the course you have the qualification who you’re going to go and help, what are you going to do? And I had this weird epiphany. I was around 30 years old. So I’m like that 31, 32, something like that. And the epiphany was, in fact, I thought that I started this coaching course, because I wanted to help other people. But in fact, what I’ve realized is I need coaching more than anybody.
Intro 22:11
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like now long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, doctors will explain things that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 22:35
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recovery after stroke.com where you can download a guide that will help you it’s called a seven questions to ask your doctor about your stroke.
Intro 22:54
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery, head to the website. Now, recoveryafterstroke.com and download the guide. It’s free.
Bill Gasiamis 23:13
And I’m not going to go and coach a single person until I go through a ton of coaching myself because I am struggling with who I want to be when I grow up. You know what, what my frustrations are in my family at work and all that kind of stuff. I want to learn I want to grow, I want to develop.
Bill Gasiamis 23:35
And I thought that I was in a position to help other people do that. And I’m not because I’ve never done that myself. So I think what I’ve discovered in the my course, is that I need coaching and then I actually went on a massive journey of counseling and coaching. And still to this day I go to counseling and get coaching. So would you relate to that? Did you start the journey thinking that what you needed to do was help other people but in fact, what’s going on is you’re looking for some kind of a way to settle stuff.
LeeAnn Walton 24:16
Well, to be completely honest, the reason why I kept taking on all these classes was because I loved teaching yoga, and I was good at teaching yoga and I wanted to leave the corporate world and it was very close to my stroke I was getting ready to resign from my job. And well I’m still at my job.
Bill Gasiamis 24:52
So it was a gateway. I like that. So it was different from what I did. I didn’t do it as a way to get out of my job but you were using it as a way to learn, create a following. And then do a flip, like, leave the corporate job and then just move into yoga, however you were teaching yoga and encouraging people to practice yoga. How much of the practice were you doing?
LeeAnn Walton 25:21
Towards the end, none. I mean, I would force myself if I didn’t, if it was almost six days And I would go to a yoga class, but I can barely keep my eyes open. And like, some of my students, they would go to like, where I because they would always ask where where do you practice?
LeeAnn Walton 25:46
And I would, you know, and they start showing up and they’d be like, Hi, LeeAnn. How are you? I’m like, I am so tired. I don’t even remember your name, I gotta leave. I was a walking zombie. And then now like, I have plenty of time to contemplate.
Bill Gasiamis 26:15
So if you’re working 18 hours a day, that only leaves another eight hours. What are those eight hours consist of? I imagine somewhere in there, there has to be some sleep. How much sleep?
LeeAnn Walton 26:30
Honestly it wasn’t that much sleep. I mean, because I’m a perfectionist, and I would teach a class and.
Bill Gasiamis 26:39
Excuse me let me interrupt, it doesn’t leave eight hours. If you’re working 18 hours, it leaves six hours.
Hemorrhagic Stroke Can Happen To Anyone
LeeAnn Walton 26:46
Okay probably like four hours. Because I would come home and I’d be like, Okay, so this part of the sequence didn’t work. I’d look at the clock and be like, Okay, I’ll just spend like an hour and finish, you know, and like, try to improve it.
LeeAnn Walton 27:06
And then honestly, sometimes I would go to bed and but my mind would be and then I’m looking at the clock. I’m like, like I have to get up tomorrow you know, so four hours, maybe even less, for some days it was definitely a huge wake up call. For my stroke, like I mean, the worst thing that has ever happened to me was I had a wisdom teeth pulled and I thought that was a horrible experience.
LeeAnn Walton 27:47
Oh, I would never got sick. I never broke anything. So when I was in the ambulance, going to the emergency room, I kept thinking, I was having a dream, because I’m like, things like this. They don’t happen to me.
LeeAnn Walton 28:09
And I think I was in shock for many months. Because I kept thinking, I’m going to wake up and I know this is just a bad dream. Because things like this don’t happen to me. And I think the day that I realized what happened to me I broke down and cried because the severity of the situation. Just I really got for the first time. But we talked about this before. You know, it has been a hard and challenging journey.
LeeAnn Walton 29:06
And the first year I tried to be optimistic. And then after the year, everybody said, Oh, you’ll get everything back. And after a year, I still walk with a limp and it has affected my right arm and hand I can’t really use it. I got really angry and then I got really quiet.
LeeAnn Walton 29:40
Meaning I really had time to really think about what my lifestyle was, who I was before my stroke and And in many ways, I mean, I think having a stroke was the best thing for me. Because it has opened my eyes to so many things. I realize now I’m like, not always so healthy. I had green juices every day. I’m like, Okay, three hours sleep. I’m like, that was so not healthy, not healthy.
LeeAnn Walton 30:31
And, I was so unaware of it. You know, I’m like, No, I’m a yoga instructor, green juice and vegetables and fruit. And, you know, I just realize, I laugh at my lifestyle. And there are certain people in my life, you know, they’re complaining about their life, and they’re this and this and this, and I’m like, I would slow down and fire you.
LeeAnn Walton 31:01
They’re like, nah, I’m like, okay. But from what I experienced, you know? You really got to think, are things really healthy? Is your life balanced? You know, how do you treat people? And I think, like, I hate to say this, but it’s the truth. But before my stroke, if I saw somebody like in a wheelchair, or, you know, and it was a packed train, I’d be annoyed.
LeeAnn Walton 31:46
Because I had to go round you know, wheelchair, and you know, and I was like, God, I was a jerk. I really was a jerk. And then, you know, if I was such a yogi, and everybody in my world was a yogi, but if you weren’t part of my Yogi world, I didn’t have time for you.
LeeAnn Walton 32:10
You know, so, there’s a lot of people that I kind of brushed off, whatever you’re not, oh, yeah, I’m gonna quit because I’m gonna teach yoga. But now, I talked to them. And I realized, I’m like, God, man, he was such a jerk before because this is the nicest person on earth. Like, he’s so nice. And you didn’t have the time of day to say, you know, to be just be like, Nope, I got to work on my yoga.
Bill Gasiamis 32:44
Was you a bitch?
LeeAnn Walton 32:49
I wouldn’t know. Well, I wasn’t, no, well.
Bill Gasiamis 32:56
That’s not a denial. Sorry. I’m so sorry. That is not a denial.
LeeAnn Walton 33:04
I was a bitch. But it’s like except I was walking down, like, you know, the New York streets and like somebody like said something to me then I’ll be like, you know, fuck you.
Bill Gasiamis 33:18
Well that’s normal. That’s, that’s okay.
LeeAnn Walton 33:22
That’s normal for New Yorkers.
Bill Gasiamis 33:23
That’s normal. That’s okay. I got no issue with that. And I’m not I’m just being cheeky. I’m not saying that you were a bitch. But you’re just reminded me of me, you’re just describing me. That’s exactly the kind of person that I was. I wasn’t that busy. I didn’t, I never worked 18 hours a day.
Bill Gasiamis 33:41
Although I did give it a good shot a few times. But I was really unaware of other people. I was really selfish. I was creating problems that weren’t really there. I was doing all of the things that you described in my own weird way. And it took me to have to be in a wheelchair for the coin to drop for me to finally go, Ah, shit, like when somebody is sitting in a wheelchair.
Bill Gasiamis 34:18
They’re not actually just sitting down, because they can’t be bothered doing anything else. They can’t use their legs, there’s a reason why they’re there. And then, not only that is there’s other complications that happen from sitting down in a wheelchair because your legs don’t work properly on one side or both of them.
Bill Gasiamis 34:38
So I really became aware of how much of a you guys call it jerk. We describe ourselves as assholes how much of an asshole I was and that’s kind of the equivalent of bitch you know, female. So it’s the male is the asshole so it takes some time to have that awareness.
Learning Empathy After A Stroke Bill Gasiamis 35:07
And I am glad that of all things, that’s one of the big things that I learned is that empathy doesn’t come from a lack of life experience. So when you’ve had a dream run, you’re more likely to be unable to understand the struggles of somebody else. And the difficulties and for me up until then, you know, 37, I reckon I had the dream run, I’d say, you know, I was never in hospital, I was never seriously ill, I was always able to be up and about and work and use my body and took it for granted, like everybody.
Bill Gasiamis 35:49
And now, I’m not that way inclined. So because I have been there, I can empathize with people. And these days, we will go into the city, and we’ll go for some shopping or whatever with my wife, and most of the time is spent dealing with and chatting to people that are living on the street.
Bill Gasiamis 36:16
And they’ll see me coming a mile away, and then we’ll lock eyes, and I’ll be, Hey, how’s it going? What’s happening? How come you’re here? What can I do to help you and sometimes they just need a few dollars, or give me a feed or something like that. And that is a really interesting thing that I can do now. Because before I couldn’t even see those people at all.
Bill Gasiamis 36:42
And now they’ll say, It’s so lovely that you stopped. And I’m thinking, if that was me, because they could just as easily be me on that street, I could be out on my butt in no time, this could have gone a lot worse. And it could have affected my personality, my memory, my ability to, you know, be normal, whatever that is.
Bill Gasiamis 37:08
And, I could have just as easily have been in a position where I need the amount of help that they need. And I could still end up in that position. So I think I need to make sure that we treat people the way we want to be treated if we were to be in the same situation. That can’t happen without stroke for me, stroke had to teach me that.
LeeAnn Walton 37:38
That’s very interesting that you say that? Because since my stroke, yes, I am I mean, yes, I’ll talk to any stranger who talks to me, you know, and I really thought about who I was, and who I needed to become. And also starting to really, for the first time in my life, create boundaries of not accepting certain behavior from people.
LeeAnn Walton 38:27
And maybe not, this person no longer needs to be in my life. Because they don’t treat people well. You know, and I’m like I understand them, because I thought I was invincible and like, you know, I took everything for granted.
LeeAnn Walton 38:52
I can move my body and, and now it’s like, you have no idea how grateful you should be. I’m like, life is so short. And anything in life can change on a dime. And we know that. And I think that is a lot of wisdom that most people don’t really learn.
Bill Gasiamis 39:21
Yeah, and you have to learn from life experience. That’s the weird thing. And we’ve had life experience. It’s sometimes an experience maybe we wish you didn’t have but the reality is, is that the people who didn’t get the chance to reflect on it like us, the ones that passed away from the stroke, their heart attack their cancer, their whatever. That’s like.
Bill Gasiamis 39:48
That’s the part that kind of plays on my mind is I have friends who died in their 40s at least two of them who were in their 40s that died from heart attacks. happened, and they were gone. They didn’t have a recovery, they didn’t have the anger, the depression, the bargaining, the denial, the acceptance, they didn’t get any of that. They just went, they’re gone.
Bill Gasiamis 40:14
And now we have this other part of which I am grateful for is I’m alive. But I get to do all that reflecting, and all that growth and all that wisdom creating, and now I get to apply that. And that’s going to enhance my life, regardless of how my left side feels, and how immobile I am.
Bill Gasiamis 40:38
And that’s going to make my connections with other people better. I got to apologize to my family and friends and tell them I love them and experience growth in my relationships. These other guys didn’t, they just, they never got the second chance they’re gone.
Bill Gasiamis 40:58
So I feel like if I was gonna have anything happened to me, it’s probably one of the best things that’s happened to me and I talk about that a lot. And so do you. But that’s why it’s one of the best things that’s ever happened to me not because I appreciate the ride in ICU, or I appreciate all the needles and the not being able to walk.
Bill Gasiamis 41:26
And well, I don’t appreciate any of that when it’s happening. But on reflection, I’m going, Man that kicked me in the butt that taught me a lesson, and I’m going to learn from it. And I’m going to take that and I’m going to do something about that. And up until then nobody had kicked me in the butt or I had not allowed them because my ego didn’t let me be taught a lesson nicely. I had to learn the hard way.
LeeAnn Walton 41:59
Me too. Yeah, and but before my stroke, it was really hard for me to ask for help. And this is something again, that I would teach my students, it’s okay to ask for help. I didn’t do that for myself. And when I had my stroke for the very first time, I had to ask for help. I had to ask somebody to help me walk down the hall.
LeeAnn Walton 42:34
Actually, I had like, had a help somebody to walk into the bathroom, because I couldn’t even like, make it to the bathroom. You know, it was a very humbling experience. And also, it has taught me that, you know, LeeAnn, it’s okay to ask for help. You know, I’m like, I taught my students and really too bad. I didn’t listen to any of it. Till now.
Bill Gasiamis 43:06
Yeah. So what’s it like with the family? Have you been able to reach out to them and mend things or just sort of be a little bit different or has changed at all with me, I, I really went out of my way to make sure that I not that things were sketchy or anything, but you know, I could be a bit of an aerosol. So I tried to tone that down. And I tried to ramp up the niceness.
LeeAnn Walton 43:41
Well, I’m adopted. And my family, they really didn’t understand what a stroke was. And they were under the impression after, like, a year that I was back to normal, because but they don’t live in New York, and my sister would start getting angry at me saying, I keep asking you to come down and you don’t do this.
LeeAnn Walton 44:19
And finally, I told them, I can’t I can’t carry a suitcase. You know, and so that was a challenge. And then the whole COVID thing. I don’t really want to get into it. But yeah, I don’t really talk to my family, but it was mainly over COVID.
Fatigue After A Hemorrhagic Stroke
Bill Gasiamis 44:44
Ah, okay. The misunderstanding part that’s really common family members don’t understand. I look normal on the outside “normal”. They look at me everything appears as if it did before.
LeeAnn Walton 45:00
Exactly.
Bill Gasiamis 45:01
And they just can’t connect the dots. They can’t. He’s describing fatigue. And it’s what does that even mean? I was tired once maybe is it tired? No, no. Like it’s tired times 10,000.
LeeAnn Walton 45:15
Yeah, it’s like when we like I would fight to try and you just can’t fight it. You’re just like I’m not asleep, one also, I had a lot of sleep to catch up on. But I was like, yeah, no, I mean, the fatigue, what I went back to work.
LeeAnn Walton 45:39
And I mean, I came in later. So I didn’t have to deal with rush hour, like I left early, but like, and I sit at a desk, and I was at the end wiped out. I mean, I would go home, I would feed my cats. And I would eat something and go to bed, like I was in bed by like, seven. Because I just was so so tired.
Bill Gasiamis 46:10
A lot of people listening would relate to that, especially me as well. And the monitors are, when I first sat in front of a monitor again, for a little while, it would really freak my brain out, it was really difficult to look at a monitor for a long period of time. And getting through a full day of work was so hard. So hard.
LeeAnn Walton 46:35
And mine was certainly like the monitor, it was just fatigue. You know, even like walking down the hallway, my leg would get really heavy, I’d have to go back and sit down. It was just, it completely wiped me out.
LeeAnn Walton 46:56
And that was something that to get I had to get used to because before I was like, I gotta go to this, gotta go there. And then now I was like, No, I gotta go home and go to bed. And I lost some friends over that, because they didn’t get that. You know, like, you never want to go out?
LeeAnn Walton 47:18
I’m like, I could barely make it through the day. Like, I’m completely wiped out. Like there’s I’m sorry, I can’t meet with you after work, because I could barely make it without falling asleep on the subway. And no, LeaAnn, you’re just making excuses. No, I’m not.
Bill Gasiamis 47:42
Yeah, you did have some kind of a shift, though, in the way that you dealt with your adopted family and your biological mother. Tell me a little bit about that. How did that shift.
Bill Gasiamis 47:41
And the COVID thing is issue for lots of families type of comes a lot of disagreements and misunderstandings and differences, differences of opinion. And I think if anyone listened to this is doing that instead of just just allow everybody to have a different opinion and love each other.
Bill Gasiamis 47:41
Just relax about it all. And let’s see if we can get through COVID alive, which most of us will so and when we do that, then let’s just calm down.
LeeAnn Walton 47:41
Calm the fuck down.
Bill Gasiamis 47:41
Yeah. But tell me about that other part of your life that changed for you?
LeeAnn Walton 48:45
Well, I am adopted. And I grew up in a white family and lived to white neighborhood and I was always ashamed of being Asian. I so wanted to be white, and have long blonde hair.
LeeAnn Walton 49:09
And then I went through many, many years of anger towards my biological mom. Like, Why did you abandon me? And so I think a part of me also, I rejected her. And so I didn’t want to learn anything about Korea, because I was going to reject her, you know, everything about her.
LeeAnn Walton 49:42
And it wasn’t until after my stroke where I started actually talking to people in the yogi world, and there’s an older Lady in my building, and I’ve become friends with her. And we started talking. And she was telling me she’s like, you know, I adopted two kids.
LeeAnn Walton 50:15
And I was like, really? And I was like, what agency? And she says exact same agency that I was adopted from. And she asked me, have you ever tried to trace back and like, try to maybe find you know, your biological mom. And here’s some books that you can read about the mothers who gave up their children, and you could hear the reasons why. And I started reading those books, and I cried.
LeeAnn Walton 50:56
And I realized I was a jerk because I never once thought what did my mom have to go through. It’s very selfish it’s about me. And for the first time, I was able to forgive my mom, to forgive myself. And I don’t know if she’s alive, or she passed away.
LeeAnn Walton 51:33
But you know, I talked to her the other day, tell her about my day, you know, I asked her, I’m doing this, I think you’d be really proud of me. And I’m learning about where I came from, culture, learning how to, sorry… Cook Korean food, really embracing finally, where I came from. And the amazing woman who had me?
Bill Gasiamis 52:16
Yeah, is it impossible that a mum has to give birth to a child and then give that child away and never think of that childhood again. She’s thinking of that child every single day of her life. And she’s wondering whether she did the right thing or not, and whether her decision was the right thing, she probably has regrets.
Bill Gasiamis 52:42
But she most likely did it for you to have a better life, more opportunities, and all that kind of stuff. And it’s the most selfless act to bring a child into the world and then to say, the child would be better off with somebody else. It’s an amazing thing to do even though it’s of course very difficult for the child to learn to coexist in a world that is very different looks very different from the way that her world would have looked.
LeeAnn Walton 53:19
Yeah, I laugh because I recently received my adoption documents and on, my flight status. It originally said France, and then it was crossed-out and I’m like, darn it I could’ve been French.
Bill Gasiamis 53:45
Your croissant. Would the fashion have been better or worse?
LeeAnn Walton 54:01
Oh, definitely better. Definitely better. And the thing is, I love France. I love. So when I saw it, I was like, it could’ve been so different.
Bill Gasiamis 54:17
I’m not buying it. You would have taken Paris for granted. You would have said I wish I went to New York. The city that never sleeps.
LeeAnn Walton 54:31
I don’t know. I think I really like France. I think but no. New York is my home. But after that sometimes I daydream you know?
Bill Gasiamis 54:46
Yeah, that’s a lovely thing to get to that point where you can forgive your biological mom and that’s a lovely thing. I mean, it should be a load off emotionally for you. It should really help shift and lighten your load right?
LeeAnn Walton 55:01
Yes, it definitely did. definitely did. opened up my heart even more.
Bill Gasiamis 55:10
Yeah. And which part of Korea?
LeeAnn Walton 55:17
Seoul
Bill Gasiamis 55:17
Is that? South Korea, right?
LeeAnn Walton 55:21
Yes.
LeeAnn Walton 55:23
You know, Parasite and Squid Games. That’s Oh, that’s where yeah, that’s where everything’s happening.
Bill Gasiamis 55:33
The weird stuffs happening.
LeeAnn Walton 55:37
That’s one thing I learned about Korean is like we’re fucked up like maybe that explains a little.
Bill Gasiamis 55:50
I saw the end of Squid Game, and it was worth getting through all the horror and gore. So if you’ve been on the fence about watching it, and you’re not sure, because it’s very gorey, and there’s a lot of, you know, crazy stuff happening. It’s worth it at the end.
LeeAnn Walton 56:11
At the end. I agree. I agree to it wasn’t exactly what I expected the end. But yeah, at the end. It’s really I thought was kind of powerful. Yeah, but it is very gory. And I’ll think some of the things you’re like, oh, my gosh, I can’t believe I’m watching this show. But it can’t stop.
Bill Gasiamis 56:39
It’s like a train wreck. You have to look.
LeeAnn Walton 56:40
I know, I can’t look away.
Bill Gasiamis 56:45
And Parasite was an interesting Korean film because it won a whole bunch of Oscars. I’m pretty sure it won like a ton of Oscar.
LeeAnn Walton 56:56
Yes, it won an Oscar. It was actually the film where it really I actually learned about how stratified Korea is the classes of the really, the elite and then the poor. I mean, they’re, living in basements for heaven’s sakes, I mean, spoiler I hope no one spoiling this. But like, they open up the window exterminator goes by so they kill you know, they’re insects in their apartment. I mean, that’s how poor they were.
LeeAnn Walton 57:44
And I didn’t know that. And that also helps me understand more what I started reading about these women who had to give up their child, because a lot of them were very poor. And when also it’s kind of a sexist, contrary, it’s definitely you are looked down upon if you are not married, and you have a baby.
Bill Gasiamis 58:19
They’re still living in the 1930s. It’s interesting that shifting a lot, though, that shifting all over the world, and I think that’s a great thing. Perhaps has it moved forward since perhaps your birth? Do you think has it changed? Or is it still in a similar mindset of, you know, single women with children? Is not the right thing.
LeeAnn Walton 58:51
I honestly, I think in the beginning, better over there. But I still think but don’t quote me on this. That there is still a little bit of that stigma still.
Bill Gasiamis 59:07
Yeah. So would have been tough experience for women to go through that have a child perhaps out of wedlock? Who knows what, and then have to make a decision on how they’re going to move forward in their life in their society that they have to live in every single day?
LeeAnn Walton 59:27
Actually, oh, I just realized something. I’m like, I think it’s my mom. That abandoned me. My mom could have had a stroke and died. It was my dad, I’m just thinking because, you know, I have no idea. It runs in the family, you know, having a stroke, but.
Bill Gasiamis 59:49
Yeah, well, it can. And yeah, this is one of the things that unfortunately, you’re not going to know you’re not going to know your history is there a possibility that you’ll be able to continue the mission to find more details of the family history?
LeeAnn Walton 1:00:10
I’m actually waiting for the orphanage in Korea, to see if they can send me copies of my file of how I came to them. So hopefully, in the new year, I’ll get that information.
Bill Gasiamis 1:00:33
And your mom in United States, does she have any additional information on that journey?
LeeAnn Walton 1:00:43
No, she was actually very against me ever looking for my real mom, I think she felt that I’m your mom. And that should be enough. So there wasn’t a lot of also factored into me not really looking.
Bill Gasiamis 1:01:07
Yeah. That would be hard for everybody isn’t it? It’s just that person perhaps has made a decision to do something that’s really good. You know, bring another child away from a situation that’s really difficult, raise that child and then be a mom to that child and then feel perhaps, if they’re emotionally sensitive feel perhaps that they’re being let down or betrayed or some crazy word.
Bill Gasiamis 1:01:40
I don’t know what the word is, by the child that they brought into the world to save to whatever you know, who knows? And it’s really difficult to understand what might be going on in the head of adopted I’m not sure if the words the right word, adoptive parent or the parent.
LeeAnn Walton 1:02:07
Adopted mom. Yeah.
Bill Gasiamis 1:02:10
It would be really difficult. Do you fit in through your life? Did you feel like fit in other than you weren’t blonde and blue eyed? Right? Typical. Did you feel like you fit in in every other way? Were you always feeling comfortable around family siblings?
LeeAnn Walton 1:02:31
I always like, felt like part of the family and I laugh because I remember a friend of mine in college. And she’s like, did you know you were adopted? I think yes, okay I said look at the pictures and I will definitely see that I looked very different from my family. She’s like, I kind of got that, I knew that I was adopted. It was not it was not a surprise. I was like, it was not a surprise. Like I even told her I’m the only one that’s adopted.
Bill Gasiamis 1:03:21
Wow, that’s so funny. She was joking, right?
LeeAnn Walton 1:03:26
No I was like, she went on to be a psychologist.
Bill Gasiamis 1:03:40
Maybe she’s grown. Maybe she’s had new learnings.
LeeAnn Walton 1:03:47
Let’s hope but like, I can’t believe you just asked me that question.
Bill Gasiamis 1:03:56
Yeah, look, people can be thick and that it’s just strange. You know that she could think that but you know, maybe she thought you’re oblivious. Maybe she thought you had no idea that you’d look different?
Bill Gasiamis 1:04:11
Maybe you just she thought that you just felt like you were you just were 100% True Blue. You know, United States person looking at 30 generations before you and all that stuff. Maybe she just thought that it’s legit. It’s impossible.
LeeAnn Walton 1:04:40
I know, you’re very nice. I’m just like what?
Bill Gasiamis 1:04:46
I’m trying to just give her a break.
LeeAnn Walton 1:04:48
I know you are.
Bill Gasiamis 1:04:49
Cuz that’s one of the dumbest things I’ve ever heard.
LeeAnn Walton 1:04:56
I’m like was it really were you shocked when they told you were. I was like no I wasn’t shocked.
Future Plans
Bill Gasiamis 1:05:05
Wow, I love it. So you’ve been three years into this recovery journey by now. What’s the future hold? What are your plans? Being that today in Australia, by the way, is the 31st of December 2021. And we’re supposed to be talking about New Year’s goals, resolutions, all that kind of stuff. What’s the future hold for you?
LeeAnn Walton 1:05:37
Well, I’m going to write a book about my stroke. But it’s going to be about all of the lessons that I have learned from my stroke. You hear stroke. We hear all like the bad things. And the stories and the struggles and yes, that is part of the journey. But there is another part of the journey that you can take.
LeeAnn Walton 1:06:13
And there’s so much wisdom that I have learned from my stroke. And it’s not and it’s gonna be a book, not just about first stroke survivors. But for people and also, like, maybe I could change somebody to really slow down and be kind and wise, and that’s my big thing is write that book.
Bill Gasiamis 1:06:48
Can we workshop some titles?
LeeAnn Walton 1:06:52
Yes. Wait a second. I’ve been working on it.
Bill Gasiamis 1:06:55
I wasn’t being serious. I was gonna say like, 101 things I’ll learned from stroke. Or maybe like, seven things that stroke taught me or one of the other quirky things like that people label.
LeeAnn Walton 1:07:25
You know, I thought about, like, what I want to call the book. And stroke is not going to be any part of the of the title.
LeeAnn Walton 1:07:42
I’ve been toying with strong or something. I don’t know yet. But I don’t want it to be too late to new agey, but I don’t know that at first I thought maybe lessons, life lessons or they’ll come to me. So it’s something with meaning, wisdom.
Bill Gasiamis 1:08:23
It’ll start to emerge as you start to write the book, I reckon, you get a feel for the book. And when you structure it, when you know what the chapters are, when you know what you want to share what the message is going to be. It’ll just emerge as it goes. And and I know he’s saying that you don’t want it to be about stroke, but you’ll be sharing your stroke journey.
Bill Gasiamis 1:08:46
So maybe a subtitle might have the word stroke in it or suggest that it’s coming from somebody who’s had a stroke and learned about life in her 40s. Yes, something like that, but I get, I get what you’re saying, you know, the book that I’m writing, I don’t really want it to be about me.
Bill Gasiamis 1:09:08
Which is strange, because it’s about stroke. But there’s a very small amount of it that’s being allocated to me, because I just want people to feel like they can relate to me. But then it’s about the lessons again, that I learned and it’s got nothing to do with. Well, what it’s, it’s because of the stroke that I lent them, but it’s not a book about stroke type thing. It’s about post traumatic growth, you know?
Bill Gasiamis 1:09:41
And that’s kind of where you’re at. Yeah, I know you want to share that story of growth and learning and wisdom and overcoming and that’s why you’re going to feature in my book, that’s why you’re going to have a chapter dedicated to you I’ll share a bit of your story in there.
Bill Gasiamis 1:10:02
That’s the whole purpose for that. Because I am, like you, I feel like there’s a lot of crap to talk about. But there’s also a lot of great things to talk about that come from the crap, they have to only emerge from the hard things. You can’t get wisdom of knowing what it’s like to be in a wheelchair, by never having to be in a wheelchair, and can’t get out of that wheelchair.
Bill Gasiamis 1:10:31
It’s one thing to sit in a wheelchair and push yourself around for a laugh. You know, and I’ve done that once in my life. But it’s another thing to be in there and then go, I can’t get out of that wheelchair. That wisdom of life doesn’t come from the mild version of that. It just doesn’t
LeeAnn Walton 1:10:52
I know it. Exactly. And it’s also those moments, at least like, I couldn’t feel on the right side of my arm. And one day, I was walking down the street, and I felt something straight into the right side of my arm. And I was like, Oh my gosh, I was like, Yo, like, Oh, my God, what’s going on? Should it go to the doctor.
LeeAnn Walton 1:11:26
And then I realized it was the wind. I felt the wind on the right side of my arm. And right then, and there on the street, I burst into tears. Because I forgot what it felt like. And then when it came back, like I was so grateful.
LeeAnn Walton 1:11:58
And it just really just those moments are so humbling. Because I felt very humble because I was like, I took for granted, you know, that feeling in my right hand and I am starting to get feeling back in. Thank you. Like just was humbling and so grateful.
Bill Gasiamis 1:12:35
Yeah, the wind on your skin. I mean. Wow.
LeeAnn Walton 1:12:42
Yeah. well, what is that? Do I have to go the hospital? Like, and then like, wait a second, I think I remember this, then I’m like, it’s wind I’m feeling the wind on my skin. And, I forgot what it felt like.
Bill Gasiamis 1:13:07
Yeah, that’s such a big thing. And it sounds so benign because we normally don’t pay attention to the wind on our skin, we pay attention to it on our body when we’re being pushed by the wind, for example, or when it’s messing up our hair bow don’t really pay attention to what it feels like.
Bill Gasiamis 1:13:25
And I have a similar feeling. I can feel the wind on my left side now. But not because it feels great it because it feels bad. So when I feel the wind, it hurts on my left side on my right side. I don’t notice it. But on my left side, it causes discomfort.
Bill Gasiamis 1:13:48
Not real pain, not debilitating pain, but discomfort where I would rather be wearing a sweatshirt or a jacket or something so that I don’t have to feel it. And I put my left hand in my pocket so I don’t have to feel it.
LeeAnn Walton 1:14:05
I have always numbness and tingling on my right side of my hand and my arm all the way up to the right side of my face. And let me just tell you like my right eyeball is numb. Like and I always feel it. You know, as soon as I wake up, I’m like oh there it is. But that let me just tell you I think we have experienced many sensations, that I don’t think a lot of people have.
Changes In Anatomy Bill Gasiamis 1:14:50
Well, we’re over sharing. I’m gonna share. So that straight down the middle thing happens to me too, and that’s straight down the middle of every thing on my body. So, I’ll just leave it at that.
LeeAnn Walton 1:15:13
I never. Wow what’s that like?
Bill Gasiamis 1:15:20
That’s like numb on one side and less numb on the other side.
LeeAnn Walton 1:15:27
Interesting. Wow.
Bill Gasiamis 1:15:31
Yeah, yeah. And it’s like, I don’t know how many people can say that? I can. And I know there’ll be a few other guys that are relating to me right now. But yeah, really strange really bizarre. I’ve even perspired on half of my body and not the other half of my body. Have you ever done that?
LeeAnn Walton 1:15:51
No.
Bill Gasiamis 1:15:52
So this is this it is dry. And besides perspiring.
LeeAnn Walton 1:15:59
My gosh, isn’t that that’s like, but then it makes me like our brains are like, it’s so scrambled and jumbled that like, oh my gosh, it just I feel like, I always explain a stroke to people. I always say think of your brain as a computer.
LeeAnn Walton 1:16:23
And then it goes down. And then when it comes up, half the program is not running, it’s running something completely different. And that’s why strokes are different for every single person.
LeeAnn Walton 1:16:40
Because that whatever program was affected, if that’s how it affects and that’s I just have the numbness all the way down, and the numbness in the eye and like in the weird sensation and pain in the fingers.
Bill Gasiamis 1:17:04
Yeah. So I’m in Gemini, I was born in June. So now I know exactly what it feels like to be two people in one body. My body now matches my personality. I never thought I would get there. But I’m living true to my star sign.
LeeAnn Walton 1:17:29
Well, I don’t know when I was born. So I don’t know.
Bill Gasiamis 1:17:35
Did you pick one?
LeeAnn Walton 1:17:40
The adoption agency picked one and my birthday is actually coming up? It’s January 4. So that would make me a Capricorn. I guess you know, I mean, Capricorns love to work. And before my stroke, I was working all the time.
Bill Gasiamis 1:18:07
Thank you so much for being on the podcast, I really appreciate it. I look forward to the book emerging and you’re going through that process. It’s good to hear there’s a lot of stroke survivors that are putting up books. And I just love that fact that sheet goes down. And then everyone’s going through a tough time. And everyone’s thinking about how to help other people. And it’s like, far out.
Bill Gasiamis 1:18:41
That’s such a great thing to come out of stroke as well. And I never really was to help the other people kind of guy like I was never that guy. But I thought this real deep desire to share and help other people. And that’s partly for the pod why the podcast happened.
Bill Gasiamis 1:18:57
That’s now why I stop and speak to people that are asking for money on the street and all that type of thing. I have this deep desire now to support and help people as little or as much as I can. It doesn’t matter. Some of them are very minor gestures, but they mean a lot to the people that are receiving them.
LeeAnn Walton 1:19:18
I just want to say that I really appreciate your podcast because I came across it and it was something really good for me to connect to and connect with you.
Bill Gasiamis 1:19:34
Yeah, absolutely. How long did it take you before? How long did it take you to find something that sort of helped you feel like you’re not alone? Was it something that you thought of at the beginning, or was it just later down the track when you thought I wonder if there’s a podcast about this?
LeeAnn Walton 1:19:51
I tried, you know, there were like Facebook pages were stroke survivor, you know, support groups and stuff like that. And I found a lot of them to be and I totally, I totally get it very angry and depressed.
LeeAnn Walton 1:20:17
But at one point, I was like I get where you guys are. But I’m going down this different journey. So I got rid of I left those groups and was always on the lookout for there’s gotta be something a little bit more positive. And I found you!
Bill Gasiamis 1:20:46
Well that’s it I’m glad that’s how you describe me. Thank you so much. Well, I look forward to keeping in touch with you. And just learning more about you and learning more about your book and talking about that sort of stuff. If you ever want to be on the podcast again, all you got to do is reach out.
LeeAnn Walton 1:21:08
I love to be on the podcast, literally this is fun.
Bill Gasiamis 1:21:16
I ever get back to New York, you know, probably gonna slip in your spare room with my wife there just so you know.
LeeAnn Walton 1:21:24
I don’t have a spare room. Couch.
Bill Gasiamis 1:21:29
Whatever.
LeeAnn Walton 1:21:32
And I hope you like cats, because I have a cat.
Bill Gasiamis 1:21:36
We like cats. And we don’t like spending $20,000 to stay for a week in New York. Yeah.
LeeAnn Walton 1:21:42
Oh, and you should stay with me because I live in Long Island City. And I have a beautiful view of the city and the water. So yeah.
Bill Gasiamis 1:21:55
Sounds like a lovely place. Thank you so much for being on the podcast.
LeeAnn Walton 1:22:00
Thank you for having me.
Intro 1:22:02
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. The opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.
Intro 1:22:19
All content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis the content is intended to complement your medical treatment and support healing.
Intro 1:22:36
It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives did not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or is a substitute for the advice of a health professional.
Intro 1:22:56
Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content. If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional.
Intro 1:23:10
If you are experiencing a health emergency or think you might be, call triple zero in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department medical information changes constantly. While we aim to provide current quality information in our content. We did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content.
Intro 1:23:34
If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide however third party links from our website are followed at your own risk and we are not responsible for any information you find there.
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Chris Martin experienced a stroke because of a carotid artery dissection as a result of repeated traumas to his neck while participating in Brazilian Jiu-Jitsu also known as BJJ.
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Bill Hrncir is the 1 in 6 people that will have adverse reactions to TPA (Tissue Plasminogen Activator) which was used to bust a clot that caused an ischemic stroke but also caused a hemorrhagic stroke
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After experiencing a pontine stroke, Cory Getz did a ton of physical rehabilitation and also recognized the importance of taking care of his emotional recovery
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Mike Cameron is a leadership coach and the author of the books, Effective Leader and The Emerging Leader.
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Steve Molter was 33 when he experienced a stroke as a result of a spontaneous vertebral artery dissection. Since then he have overcome much and considers the stroke one of the best things that has ever happened.
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Mark Sanchez experienced a cerebellum stroke which may have been as a result from a dissection in one of his arteries that was most likely caused by a car collision while on a business trip in Las Vegas two years prior to the stroke event.
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At age 49 Jeffrey Morse experienced a spinal cord stroke due to complications from brain surgery an intervention which left him paralyzed from the neck down.
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Vinnie Valentino was on tour playing guitar with his band when he experienced an Cryptogenic and Ischemic stroke. A year later he is starting to get back to playing guitar once more.
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Lauren Brindisi is a doctor of chiropractic and with her sister Dr. Dana Brindisi they run the Carolina Functional Neurology Centre help people from all walks of life discover the root cause of their symptoms.
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Parenting is hard enough but parenting after stroke brings with it so many more challenges. Today I am joined by Dr. Bettina Tornatora for a discussion of some of the problems parents face after a stroke
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Francisca Wilson had just arrived at the hotel in Nepal for the trip of a lifetime when she experienced an ischemic stroke that left her with Global Broca’s Aphasia
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Juan Gonzales experienced a hemorrhagic stroke due to a ruptured avm at age 21. At the time of recording this interview he is 11 years post stroke and in training for an ultra marathon.
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Dr. John A. King is an author, poet, long-time activist and founder of the Give Them a Voice Foundation in Texas, which he launched in 2015 to provide advocacy, support, resources and rescue for those who have been sexually abused or trafficked.
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Christina DeVille was giving her dogs a bath and when she stood up felt disoriented and dizzy, moments later she collapsed in the toilet and crawled on the ground to get to the phone and call for help. Socials: https://www.linkedin.com/in/christinadeville/ https://www.instagram.com/christinadevillefreedom/ https://www.drivenlv.org/ Highlights: 02:09 Introduction 06:58 Symptoms of Intracranial Brain Hemorrhage 16:20 Don’t Pass Out […]
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Luis Diaz says that gang life in LA was worse than experiencing a stroke. His leg is in so much pain because of the neurological deficits that stroke caused, that he is seriously considering having his leg amputated.
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Candice Vogel is working to overcome vision problems after a stroke. Ironically before the stroke, Candice was employed as a reading and vision therapist helping children do better at school by addressing reading and vision issues.
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Sam Hanes Experienced a bleed in the brain due to an AVM, he is also dealing with 4 aneurysms, has had a craniotomy and gamma knife treatment and 5 years since this saga started he is now raising awareness about stroke
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Can you help Elizabeth Vasquez with her stroke recovery research? Follow the links to fill out the online questionnaire
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Losing your appetite after a stroke is a very rare condition that only affects very few stroke survivors. Tamare Orilus has had no appetite for 9 months and lost almost 100 pounds but is now ready to eat again.
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Izzy Hurst was at the Manchester Arena in England the day a terrorist detonated a bomb at the completion of the Ariana Grande concert. This began a series of health events that would lead to Izzy Hurst experiencing a stroke aged just 17.
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Kate Ryan has been living with one hand since age 10 after a stroke. Her book shares tips to help you be independent with the use of only one hand
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Fit, healthy and full of energy at age 41, Stacy Quinn never associated the signs of stroke to someone of her age so she avoided getting the help she needed.
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15 years after the stroke, 27-year-old Tommy Quick decided to ride more than 9000 kilometers or 5592 miles on an epic year-long journey to challenge himself and raise money for stroke research.
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Jeri Ward is the current Mrs. Ohio International, who in 2018 heard a popping sound in her head and instantly knew something was not right.
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Kent Bragg lived a full paced life when a bleed in the brain caused a stroke that shut down his left side and slowed down the pace of his life
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Tracey M. Brown was fit healthy and had spent 20 years of her life taking care of her body and working out in a gym, an ischemic stroke is the last thing she expected.
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Sarah Curlee had constant leg spasticity in her leg as a result of an ischemic stroke at age 27 and by age 29 she made the dramatic decision to have her leg amputated to solve the problem.
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Scott Stevens is a father and husband who had a stroke at 44. Listen to how he went from anxious to calm in just a few coaching sessions
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7 Tips to help manage setbacks after stroke by Bill Gasiamis will give you some ideas that may help you navigate stroke setbacks
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Ruth Carroll gave birth to her son on March 31 2017 and the very next day experienced an ischemic stroke which was a result of complications from a brain tumor.
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Have you ever noticed how your Perspective After Stroke has now changed and what is important, is not what it used to be.
The post Changing Perspective After Stroke – Jennifer Chapman appeared first on Recovery After Stroke.
Lilia Artimenia is recovering from an ischemic stroke and recently began sharing her story and adaptive exercises on her Instagram page
The post Exercise After Stroke – Lilia Artimenia appeared first on Recovery After Stroke.
Jack Breitenstein is recovering from a ruptured avm, which placed him in a coma at the age of 15 and now 3 years later joins the recovery after stroke podcast to discuss aphasia after stroke.
The post Living With Aphasia After Stroke – Jack Breitenstein appeared first on Recovery After Stroke.
Joe Cassanitit sometimes didn't take his diabetes diagnosis seriously. The decision to stop taking his medication resulted in a brain stem, progressive pons stroke.
The post Diabetes and Progressive stroke – Joe Cassaniti appeared first on Recovery After Stroke.
Emotional Intelligence can help you get unstuck, remove emotional baggage, gain more confidence, and live mindfully and happily after a stroke.
The post How Emotional Intelligence Helps With Stroke Recovery – Usha Raman appeared first on Recovery After Stroke.
Stephanie Flynn remembers the exact moment when a sudden movement caused a vertebral artery dissection that created a clot which caused a stroke.
The post Vertebral Artery Dissection And Stroke Aftermath – Stephanie Flynn appeared first on Recovery After Stroke.
Muscular dystrophy is a degenerative condition that increases the risk of ischemic stroke. Courtney Gabrus was living with muscular dystrophy when at age 22 she also experienced an ischemic stroke
The post Muscular Dystrophy And Stroke – Courtney Gabrus appeared first on Recovery After Stroke.
When a brain injury is caused by negligence you may need the help of a brain injury solicitor.
The post The Brain Injury Solicitor – Laura Barlow appeared first on Recovery After Stroke.
Finding purpose after stroke is a key ingredient that helps with the recovery process.
The post Finding Purpose After Stroke – Nicholas Kemp appeared first on Recovery After Stroke.
Noreen Walsh discovered art therapy, 30 years after experiencing a stroke due to complications from Hemolytic–uremic syndrome (HUS) at 18 months old.
The post Art Therapy For Stroke Recovery – Noreen Walsh appeared first on Recovery After Stroke.
Albert Rand Faulkenberry was watching TV when he experienced a hemorrhagic stroke due to a ruptured brain aneurysm and that's about when Claudia Faulkenberry became the caregiver to a stroke survivor.
The post A Brain Aneurysm That Burst At 40 – Claudia Faulkenberry appeared first on Recovery After Stroke.
Priya Sharma was 24 years old when multiple blood clots caused an Ischemic Stroke. There is some suspicion that the stroke, may have been caused by the contraceptive pill.
The post A Link Between Contraceptive Pill And Stroke? – Priya Sharma appeared first on Recovery After Stroke.
Gloria Morgan just gave birth to her third child when a brain stem pons stroke threatened to turn what was supposed to be a happy time into a tragedy.
The post Brain Stem Pons Stroke – Gloria Morgan appeared first on Recovery After Stroke.
Being a mom to a toddler is challenging enough and when you have to deal with a brainstem cavernous angioma causing a bleed in your brain it becomes even harder.
The post Brainstem Cavernous Angioma – Whitney Spotts appeared first on Recovery After Stroke.
Disagreements in 2020 have been on the rise, especially with the COVID crisis and world events that polarize communities everywhere. How can we be kind and still disagree?
The post Showing Kindness Even If We Disagree appeared first on Recovery After Stroke.
A vertebral artery dissection is not what you’d expect at 35 years young. In this interview Amy Wells talks candidly about her stroke and how life has change for the better in the last 12 months
The post Vertebral Artery Dissection & recovery – Amy Wells appeared first on Recovery After Stroke.
While getting ready to go to work, Paul complained of a shocking head, soon after his speech was gone and the next thing he remembers is being cared for by the paramedics.
The post Arteriovenous Malformation Recovery – Paul Fink appeared first on Recovery After Stroke.
Emily Hoffman is recovering from a carotid artery dissection which caused a stroke in early 2019. She had now started to set some walking goals and is making great progress every day.
The post Carotid Artery Dissection Recovery – Emily Hoffman appeared first on Recovery After Stroke.
Learn 8 of the best stroke recovery tips as shared by the OT Sisters, Jaimee Perea, and Suzy Burns who between them have more than 20 years of experience helping people recovering from a stroke and other neurological conditions. Socials: www.instagram.com/o.t.sisters/ Episode 87. Occupational Therapy and Stroke Lecture – Bill Gasiamis Highlights: 00.53 Introduction 03:13 […]
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The last thing Jason DePetris expected when eating breakfast one morning before running a marathon was that the numbness he was experiencing on his left side was one of the signs of stroke.
The post All The Signs Of Stroke – Jason DePetris appeared first on Recovery After Stroke.
David Roland is the Author of The Power Of Suffering, a book written after he experienced a Stroke that lead to his career as a Psychologist coming to an end due to stroke and the effects of previously undiagnosed PTSD
The post The Power Of Suffering – David Roland appeared first on Recovery After Stroke.
Neuroplasticity and rewiring your brain. Stroke Podcast Episode 27 – If you have had a similar experience with stroke as I, Rewiring the brain may be just as important to you as it to me. After I experience 3 brain bleeds between 2012 and 2014. I have left no stone unturned while on the search to […]
The post Rewiring The Brain – Michael Merzenich appeared first on Recovery After Stroke.
Sheri McIntyre believes that she is better after stroke. Sheri feels this way even though the bleed in the brain due to an AVM (arteriovenous malformation) that ruptured when she was in her early 50’s has caused deficits including vision issues, balance issues, and speech issues.
The post Better After Stroke – Sheri McIntyre appeared first on Recovery After Stroke.
Kelly Studebaker has been recovering from the challenges of a ruptured AVM from the tender age of 11. In the years that followed she has overcome many of stroke life's challenges and achieved so much.
The post Weight Training After Stroke – Kelly Studebaker appeared first on Recovery After Stroke.
Lianne Karla Bigornia was a registered nurse who then became a call center agent and was working from 9 pm to 4 am. Living an unhealthy lifestyle lead her to have a stroke due to high blood pressure and AVM.
The post Stroke the greatest thing that happened to me appeared first on Recovery After Stroke.
JJ Flentke is the owner of a physical therapy and Wellness Center called Boomerang therapy works designed for aging patients and people with neuromuscular disorders. JJ is a physical therapist with a Master's degree in public health, health administration, and a doctorate in physical therapy, with an emphasis on the aging process.
The post A New Approach to Occupational Therapy After Stroke appeared first on Recovery After Stroke.
When migraine headaches led to a brain scan, the last thing Maddi expected to hear was that she had a ticking time bomb in her head in the form of an AVM. Her decision to remove the AVM at age 20 would change her life forever.
The post The Fully Recovered Mindset – Maddi Neibanck appeared first on Recovery After Stroke.
After experiencing a ruptured AVM in her early 20’s Stephanie Ho has now been on the stroke recovery journey for more than 10 years. In that time she has had to overcome a lot of obstacles including readjusting with her new self and dealing with lost friendships and discovering new ways to be herself.
The post 10 Years of Stroke Recovery – Stephanie Ho appeared first on Recovery After Stroke.
Deborah is the author of the book Beyond Trauma and although she is not a stroke survivor she knows a thing or two about recovering from a brain injury. Her message is definitely going to resonate with stroke survivors.
The post Beyond Trauma – Deborah Stathis appeared first on Recovery After Stroke.
In episode 100 Bill is joined by his wife Christine Gasiamis who shares what it was like for her to go through stroke as a wife and mum and then to live through Bill's recovery and experience all the ups and down that stroke survivors go through.
The post What It’s Like Living With A Stroke Survivor – Christine Gasiamis appeared first on Recovery After Stroke.
Young Stroke survivor Kelli Geuting experienced an Ischemic Stroke at age 32 to the origin of which remains unknown. Learn what Kelli did to help heal her brain after the stroke and how her stroke recovery is coming along.
The post Ischemic Stroke Recovery At 32 – Kelli Geuting appeared first on Recovery After Stroke.
In August 4, 2016 Joe Borges. experienced a hemorrhagic stroke caused by undiagnosed high blood pressure. He ignored the signs prior to that thinking he was just having migraines.
The post High Blood Pressure Caused a Stroke – Joe Borges appeared first on Recovery After Stroke.
Ginger Burden had a cavernous malformation in her brainstem three years ago that caused her to have double vision in her right eye that eventually required surgery about a year and a half later.
The post Cavernoma – Ginger Burden appeared first on Recovery After Stroke.
Jessica was a 20-year-old nurse on shift in a hospital when she noticed herself not being able to speak due to a ruptured AVM. Since then Jessica has had to overcome a lot to get back to work and is now being monitored due to seizures.
The post AVM Recovery – Jessica Lepper appeared first on Recovery After Stroke.
Derek Van Oss suffered from AVM (Arteriovenous malformation) back in 2002. Since then he has struggled with so many challenges but now 18 years down the track, Derek was able to get back on his feet and turn his life around.
The post Time To Talk About Stroke – Derek Van Oss appeared first on Recovery After Stroke.
Brigette Sigley was juggling a successful business and family, and being busy led to her missing the warning signs that eventually led to a brain tumour then breast cancer.
The post How To Reignite Your Passion – Brigette Sigley appeared first on Recovery After Stroke.
Jim's mom had an ischemic stroke three years ago. Stroke not only impacted his mom's life but Jim's life also. As her carer Jim had to give up a lot, make sacrifices in his own personal life.
The post Caring For A Stroke Survivor – Jim Lanahan appeared first on Recovery After Stroke.
Clare Coffield had a Hemorrhagic stroke back in 2015, and while she was in recovery, she suffered a massive set back due to a leg injury. Now 5 years later, having faced so many challenges and adversities, Clare has come a long way in her recovery journey.
The post Hemorrhagic Stroke Recovery – Clare Coffield appeared first on Recovery After Stroke.
In my conversation with Dr Jim Karagiannis, we are reminded that navigating uncertain times is something that stroke survivors have done before. If you are a stroke survivor and find yourself feeling uncertain about what the future holds because of corona virus you will get alot from this episode.
The post Navigating Uncertain Times – Dr. Jim Karagiannis appeared first on Recovery After Stroke.
Dr Elena Zinkov is a functional medicine doctor who is an expert in hormones. In this episode of the RecoveryAfterStroke podcast we discuss the link between the brain, the thyroid gland and neurological fatigue as well as what you should know to help recover from fatigue after stroke.
The post Stroke Fatigue and Thyroid – Dr. Elena Zinkov appeared first on Recovery After Stroke.
These days Eric Hinwood is an actor, director, producer, editor, model, & filmmaker but not that long ago he was a teenage stroke survivor.
The post Teenage Stroke and Recovery – Eric Hinwood appeared first on Recovery After Stroke.
In this episode Bill Gasiamis talk with Occupational Therapist David Norris about the steps he took to heal his brain after 3 brain bleeds and brain surgery.
The post Healing The Brain After Stroke – David Norris appeared first on Recovery After Stroke.
Since 2013 Bill Gasiamis has been sharing about the early stages of his stroke journey to the third year occupational therapy students at Australian Catholic University. The students were learning about assessment for stroke patients.
The post Occupational Therapy and Stroke Lecture – Bill Gasiamis appeared first on Recovery After Stroke.
David Norris is an Occupational therapist from Brisbane, Australia who specializes in the brain's neuroplasticity to help people recover better from a brain injury.
The post What Is Neuroplasticity – David Norris appeared first on Recovery After Stroke.
Marcia Moran woke one morning after having experienced a stroke in her sleep due to a carotid artery dissection. Marcia had to drag herself on the floor with one hand to raise the alarm.
The post Carotid Artery Dissection – Marcia Moran appeared first on Recovery After Stroke.
Jessica Tagami was not surprised when her husband Phil experienced a stroke. On reflection, they both knew his work and sleep habits were unsustainable. Undiagnosed type 2 diabetes was the last straw.
The post Diabetes Can Lead to Stroke – Jessica Tagami appeared first on Recovery After Stroke.
Kawan Glover was only 20 years old and studying at college when doctors found a cavernous malformation on his brainstem, 3 surgeries in 3 years meant for some serious life lessons at such a young age.
The post Cavernous Malformation at age 20 – Kawan Glover appeared first on Recovery After Stroke.
Do you have the appropriate attitude, mindset or orientation for what you’re trying to achieve in your stroke recovery? Can you can tell if it’s helping you or not?
The post How To Have A Growth Mindset – Marvin Oka appeared first on Recovery After Stroke.
Vince Holland was 28 years old when a headache he had been managing with over the counter painkillers turned out to be much more sinister than he could ever imagine
The post From Headache To Stroke – Vince Holland appeared first on Recovery After Stroke.