Beyond Labels and Limitations: Recent Episodes
John Graybill
Welcome to the podcast for Beyond Labels & Limitations.
John talks about living a life with Muscular Dystrophy
BL&L, started as an organization to raise money dedicated exclusively to Limb-Girdle Muscular Dystrophy 2A (LGMD2A) and to educate on the disease course and associated struggles of LGMD2A, as recounted through my personal experiences.
On episode 95 of Beyond Labels & Limitations, JOHN GRAYBILL shares his new job, what is going on with him physically and how trusting that everything is unfolding as it should has changed him.
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Connect with John:
- YouTube Channel
- Website
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On Episode 94 of Beyond Labels & Limitations, John shares a statistic that we have 60-80 thousand thoughts a day, 95% of the thoughts are repetitive, and 80% are negative.
One morning, John woke up and noticed thoughts flooding his head. Instead of just believing the thoughts, which is what he usually did, John just watched them. What he noticed was that he had a choice in either purchasing the thought, by thinking more about the thought, or discarding it by simply watching it and letting it go. In watching the thoughts, John was able to feel lighter and more energized mentally. This was how he discovered how to get his mental power back.
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Connect with John:
- YouTube Channel
- Website
- Email: BLLjenjohn@gmail.com
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TKG "Desire to Inspire"
On Episode 94 of Beyond Labels & Limitations, John shares a statistic that we have 60-80 thousand thoughts a day, 95% of the thoughts are repetitive, and 80% are negative.
One morning, John woke up and noticed thoughts flooding his head. Instead of just believing the thoughts, which is what he usually did, John just watched them. What he noticed was that he had a choice in either purchasing the thought, by thinking more about the thought, or discarding it by simply watching it and letting it go. In watching the thoughts, John was able to feel lighter and more energized mentally. This was how he discovered how to get his mental power back.
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Connect with John:
- YouTube Channel
- Website
- Email: BLLjenjohn@gmail.com
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TKG "Desire to Inspire"
On episode 93 of Beyond Labels & Limitations, John Graybill shares an insight he had while writing. The insight is into being vulnerable and how that vulnerability led to avoidance. It was from avoidance that he discovered he wasn't accepting his diagnosis.
Connect with John:
- YouTube Channel
- Website
- Email: BLLjenjohn@gmail.com
"Desire to Inspire" TKG
On episode 93 of Beyond Labels & Limitations, John Graybill shares an insight he had while writing. The insight is into being vulnerable and how that vulnerability led to avoidance. It was from avoidance that he discovered he wasn't accepting his diagnosis.
Connect with John:
- YouTube Channel
- Website
- Email: BLLjenjohn@gmail.com
"Desire to Inspire" TKG
On episode 92 of Beyond Labels & Limitations, JOHN GRAYBILL shares where he's been all summer, what "accident" he had and how he is moving forward with it.
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Connect with John:
- YouTube Channel
- Website
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TrishaKG
On episode 91 of Beyond Labels & Limitations, John Graybill shares the battle that takes place within his mind after a fall and how that battle determines his actions going forward. John also shares what he got from volunteering at his daughters elementary school.
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Connect with John:
- YouTube Channel
- Website
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 90 of Beyond Labels & Limitations, John Graybill wishes some very important people in his life a happy birthday and shares a fall he had while getting up from the toilet.
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Connect with John
- YouTube Channel
- Website
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 89 of Beyond Labels & Limitations, John Graybill shares how he physically just got over his last fall, in terms of bumps and bruises, only to have another fall today. John shares the importance of not allowing the situations in life to bring you down but rather to keep going no matter how small a step you take, don't give up.
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Connect with John:
- YouTube Channel
- Website
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 88 of Beyond Labels & Limitations, John Graybill shares what his day looks like. John is ambulatory, 44 years old, been living with the diagnosis for 27 years but the first signs of weakness showed up 33 years ago at the age of 12, and he hasn't worked since 2006 (16 years ago). This podcast is to show what your life could look like, if you have LGMD, but your life could also be better in terms of strength, depending on what type of LGMD you have and the mutations. So, use this podcast as a rough outline of what your life could be like if you were diagnosed at 17 with LGMD2A/R1.
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Connect with John:
- YouTube Channel
- Website
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 87 of Beyond Labels & Limitations, John Graybill shares the body changes he is currently experiencing, his daughter skiing for the first time and how he was alone for 13 hours.
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Connect with John:
- Website
- YouTube Channel
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 86 of Beyond Labels & Limitations, John Graybill shares how fatigue comes on for him and how he handles it now. John also looks at how the mind adds meaning to everything that happens and that by not adding meaning to events you can free yourself from suffering.
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Social Media:
- Website
- YouTube Channel
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 85 of Beyond Labels & Limitations, John Graybill asks the question, "Am I living life or being lived by the stories in life?" This question should be asked daily when dealing with events taking place in life. John has found that an event takes place, then there's an interpretation/story/meaning given to that event and then finally the person lives their life from the meaning they gave to the event. Living life this way gives rise to not truly living life but being lived from the stories. These stories can and usually are false but we don't know that until we look into them. John has become tired of living his life from the perspective/stories/meanings he gave himself when he was in 7th grade. And he is having a "Midlife Realization" that life doesn't need to continue on this way.
Basically the things that happen in life don't mean anything, they're just events taking place. It's when meaning is given to the event that they impact a person.
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Connect with John:
- YouTube Channel
- Website
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 84 of Beyond Labels & Limitations, John Graybill shares how his cat tried to kill him with a Karate Kid style move of sweeping the leg. John shares how he felt during and after the fall and how the world can seem to be coming down on you. But, all was not lost as a little boy rollerskating showed him one important lesson.
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Connect with John:
- YouTube Channel
- Website
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 83 of Beyond Labels & Limitations, John Graybill talks about how tired he was this past week, a five year old pushed him down and how his daughter predicted the fall 2 days prior.
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Connect with John:
- YouTube Channel
- Website
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 82 of Beyond Labels & Limitations, John Graybill shared how just when he thought he was mature, at 44, his button pusher showed up, sending him back to his 12 year old self. It's hard to see the lessons the button pusher show us when it's happening. The important part however is not what they say but rather how it effects you and why are you effected by it. John gives examples from his life, and within the past week, where situations came up and he reacted. What John discovered was how important it was to look at the thoughts that had arisen and questioned them. By not giving in to the power of reaction, through questioning and observing, he saw that the reaction had less power over him.
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Connect with John:
- Website
- YouTube Channel
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 81 of Beyond Labels & Limitations, John Graybill shares an online meditation retreat he attended and how aspects of himself came out. Also, John shares how the saying "Time heals all wounds" is not true.
The name of the retreat John briefly spoke about in the beginning of the podcast is Goenka. Here is the link: Goenka Meditation Retreat Website
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Connect with John:
- Website
- YouTube Channel
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 80 of Beyond Labels & Limitations, John Graybill shares his daughters 6th birthday and what his daughter's friend shared with him that move him, how John's mind works in the morning, and a dream John had.
The YouTube channel where John talked about Shane and SMA is Squirmy and Grubs: Squirmy and Grubs
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Connect with John:
- Website
- YouTube Channel
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 79 of Beyond Labels & Limitations, John Graybill shares how he went from a "get rid of this disease" mentality to "How do I live with this." It wasn't easy at first questioning his beliefs/thoughts but once he saw them for what they were, self-limiting, he set out to dismantle their power over him. ____________________
Connect with John:
- YouTube Channel
- Website
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 78 of Beyond Labels & Limitations, John Graybill shares his experience with Covid. He breaks down the first week of his symptoms. After a week John was starting to feel like his old self. One important part for John was to take care of his immune system by taking Vitamin D3, Vitamin C, Zine, Quercitin, NAC. After a few days of taking these supplements John felt better. Now, could the supplements have helped him faster? It's hard to say whether they did or if it was something else. In any case, taking care of your body before/and especially when your sick is important. This was merely John's experience with Covid and it may not be yours.
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Connect with John:
- YouTube
- Website
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On this final episode of season 2 of Beyond Labels & Limitations, John Graybill shares what he has learned from himself over the past year while living with Limb Girdle Muscular Dystrophy. All was not bad. In fact, when John can create some distance from his "sufferings" is when he learns the most from muscular dystrophy.
Merry Christmas and Happy Holidays!
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Connect with John:
- Website
- YouTube Channel
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 76 of Beyond Labels & Limitations, John Graybill shares what having a mobility scooter has done for him, what beliefs he had about having the scooter, and a play he went to with his family. There are lessons in everything and it's up to us to find them.
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Connect with John:
- YouTube Channel
- Website
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 75 of Beyond Labels & Limitations, John Graybill talks about self esteem and living with a disease like muscular dystrophy.
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Connect with John:
- Website
- YouTube Channel
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 74 of Beyond Labels & Limitations, John Graybill shares what it is like to be sick and what he got from his Thanksgiving get together.
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Connect with John:
- Website
- YouTube Channel
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 73 of Beyond Labels & Limitations, John Graybill shares his daughters success climbing a rock wall, how that inspired him to get up from the toilet after a long day sitting in a scooter and what can you be thankful for with having LGMD.
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Follow John:
- Website
- YouTube Channel
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 72 of Beyond Labels & Limitations, John Graybill shares a fall he had while getting up from the toilet, a book he is re-reading called, "Untethered Soul", and finally, letting go and moving on.
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Connect with John:
- YouTube Channel
- Website
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 71 of Beyond Labels & Limitations, John Graybill talks with Elijah Stacy about his life with Duchenne Muscular Dystrophy.
Contact Elijah Stacy:
- Non-Profit Website
- Elijah Stacy's Personal Site
- To purchase A Small IF
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Connect with John:
- Website
- YouTube Page
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 70 of Beyond Labels & Limitations, John Graybill shares a recent fall he had while walking from the bathroom, a halloween party he went to and how LGMD is effecting sleep.
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Connect with John:
- Website
- YouTube Channel
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 69 of Beyond Labels & Limitations, John Graybill looks at what his mind tells him, why does he blindly believe the stories it tells him and how he can go beyond the mind chatter.
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Connect with John:
- Website
- YouTube Channel
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 68 of Beyond Labels & Limitations, John Graybill shares his desire to just get up and move-similar to how Forest Gump broke free from his leg braces, a talk he had with his friend Scott about how people in the CrossFit arena get better and lastly the trusting mindset one needs to achieve in this life.
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Connect with John:
- YouTube Channel
- Website
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 67 of Beyond Labels & Limitations, John Graybill talks about his latest blood test results, how using a belt has helped him keep his independence and how he deals with struggles.
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Connect with John:
- YouTube Channel
- Website
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 66 of Beyond Labels & Limitations, John Graybill shares his recent trip to Estes Park with his family, what struggles he encountered there and how a frustrated man who honked at him revealed something. Lastly, John shares a dream he had at the end.
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Connect with John:
- Visit the Website
- Subscribe on YouTube
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 65 of Beyond Labels & Limitations, John Graybill talks about the LGMD Awareness Day which is every September 30th. This day is important in spreading awareness about LGMD. Go to
LGMD Awareness Foundation
to learn more about LGMD. John also shares some physical struggles he's had over the past week and his upcoming blood work. There are 3 tests he asks for and they are: CPK, Vit D., cCRP or CRP.
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Connect with John:
- Visit the Website
- Subscribe on YouTube
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 64 of Beyond Labels & Limitations, John Graybill shares his take away from the 2021 International LGMD Conference, which was put on by the Speak Foundation. If you missed the conference you can view all 4 days at this link:
2021 LGMD International Conference
John also shares his latest supplement, Garden of Life Company. Do your own research to see if this supplement will be of benefit to you. Lastly, John shares a tip for neck stiffness.
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Connect with John:
- Subscribe on YouTube
- Visit the Website
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 63 of Beyond Labels & Limitations, John Graybill talks about a few things. First of all, the upcoming 2021 LGMD International Conference. This is huge and is put on by The Speak Foundation. If you would like to attend please go to:
The Speak Foundation
National LGMD Conference
The conference starts Friday, September 17 2021 and ends Monday, September 20, 2021.
John also shares about a pinched nerve, how his mind goes back into judgment and comparing. Lastly, John shares how he feels LGMD is like the game Jenga.
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Connect with John:
- Subscribe on YouTube
- Visit the Website
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 62 of Beyond Labels & Limitations, John Graybill looks back on his health from March 16, 2020 to now and what has changed. John has done a podcast on changes to his health that you can hear on episodes 5, 19 and 37. In each of these episodes, John shares what struggles he has going on and then looks back to see how long he has dealt with them. The reason he does this is to track the disease progression.
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Connect with John:
- Visit the Website
- Subscribe on YouTube
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 61 of Beyond Labels & Limitations, John Graybill shares an almost accident he had while driving in a parking lot. This got John to thinking about is it time to stop driving. John looks at the first signs of driving becoming too difficult to do. He also shares how the meaning he gives to things/events in his life is what he really reacts to. By giving up the meaning, or at least examining it, you begin to see your relationship with these things/events in your life more clearly.
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Connect with John:
- Subscribe on YouTube
- Visit the Website
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 60 of Beyond Labels & Limitations, John Graybill shares how he struggles with limb girdle muscular dystrophy. The struggle wasn't always the same over 26 years. When John was younger he believed himself to be the physical John. Naturally, whenever he lost an ability, he took it hard, and he tried to get that physical ability back. It wasn't until John heard Wayne Dyer speak of an idea that "we are all spiritual beings having a human experience" did John start the shift. Now, John sees that whenever he gets down and the struggles of muscular dystrophy are heavy, it's because he has gone back into the belief that he is a physical being.
This self inquiry is a life-long one but one we need to make if we are to go beyond muscular dystrophy. Keep asking yourself, "Who am I" and you'll find out who you really are.
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Connect with John:
- Visit the Website
- Subscribe on YouTube
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 59 of Beyond Labels & Limitations, John Graybill shares how a negative thought spiraled into more negative thoughts about how his life is terrible. This isn't something new to John's life but rather a constant battle he has endured for close to 26 years. Everybody has these days but how do you get out of them?
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Connect with John:
- Subscribe on YouTube
- Visit the Website
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 58 of Beyond Labels & Limitations, John Graybill shares how traveling to his parents house brought up challenges he hadn't encountered on previous trips there. Why your friend, child or partner doesn't want to go new places or even places visited before is probably due to it's getting more challenging for them to be independent. John didn't like having to have his dad help him with going up stairs, going down the stairs, lifting him off the toilet, helping him get to the toilet, sitting in a chair. All of these activities John could somewhat do before but since the disease is weakening him John has to rely on others for a lot.
Here are the 4 part stretching videos:
LGMD Stretching Video Part 1
LGMD Stretching Video Part 2
LGMD Stretching Video Part 3
LGMD Stretching Video Part 4
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Connect with John:
- Subscribe on YouTube
- Visit the Website
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 57 of Beyond Labels & Limitations, John Graybill talks about how he sees his life with LGMD. John was diagnosed in 1995 at the age of 17. He thought his life was over when the doctors told him he had muscular dystrophy. John gave up on life. When John met Wayne Dyer, his perspective on life changed. He attended college, where he studied psychology, and started to look at how he saw himself with this disease. Ultimately, over time John began to see that this disease was here to teach him and that it was up to him to see the lessons if he wanted to live a happy life.
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Connect with John:
- Visit the Website
- Subscribe on YouTube
- Email: blljenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 56 of Beyond Labels & Limitations, John Graybill shares some of the things that suck and have sucked regarding being diagnosed with a physical disability such as Limb Girdle Muscular Dystrophy. John looks at areas of dating, walking, getting up from a chair, climbing stairs, rolling over in bed, being dependent on others to help you and what the future holds for you. John gives examples in these areas where he got stuck and solutions on how to get out of them. What John learned was that looking at what sucks in your life is not the way to live an enjoyable one. Yes life can suck but don't get stuck there, tomorrow is another day.
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Connect with John:
- Visit the Website
- Subscribe on YouTube
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
In episode 55 of Beyond Labels & Limitations, John Graybill shares what he has learned over the course of 26 years being diagnosed with LGMD.
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Don't believe everything I think
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Accept constant change
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A belief can be powerful when given enough attention
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Appreciate what I have while I have it
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Let go of control
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Connect with John:
- Subscribe on YouTube
- Visit the Website
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 54 of Beyond Labels & Limitations, John Graybill talks about finding beauty in a disease that takes away your physical abilities. It's not easy to find the lessons in your situations especially when you think your life should be another way, but it is a choice you must make if you want your life to be one that is enjoyable. John tells you the life he lived before he realized this and how it has brought happiness into his life.
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Connect with John:
- Visit the Website
- Subscribe on YouTube
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 53 of Beyond Labels & Limitations, John Graybill shares how not watching what you eat can upset your digestive system. He also shares what the symptoms are and how he dealt with them.
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Connect with John:
- Visit the Website
- Subscribe on YouTube
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 52 of Beyond Labels & Limitations, John Graybill shares what keeps him motivated to not give up. He shares how a 3 year old helped him see more clearly. The mindset is a big determining factor in the course of your life regardless of having LGMD or not. One thing to keep in mind is that if you think you can/cannot, you're right about it. How do you prevent your mind from ruining your life with LGMD? John shares what works for him and it's not a "okay, I did that and now move on." No. The mindset and working with negative thoughts is a daily ordeal.
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Connect with John:
- Subscribe on YouTube
- Visit the Website
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 51 of "Beyond Labels & Limitations", John Graybill looks at the question, "What do you do for a living". John has been asked this question for over 15 years, since he's been on disability, and how this question has impacted him. From feeling ashamed and embarrassed to making a difference in the world, John has felt both sides when someone asked him this question. But, the important aspect is how it showed John where he was at in his life. Enjoying the journey is key, not some destination where you think life will be perfect once you have all that you wanted. John's mantra is, "I don't have to be physically healed in order to enjoy my life." This is something he has to remind himself from time to time.
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Connect with John:
- Visit the Website
- Subscribe on YouTube
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 50 of "Beyond Labels & Limitations," John Graybill talks about how his wife and daughter leaving for a camping trip helped him examine his life. Being around people all the time doesn't allow for you to be alone with your thoughts, and some of the thoughts aren't positive. So, when Darcie and Chloe leave for a few days, this is the time John gets to look into how life is unfolding for him. This trip around, the idea of being grateful came up. "Why can't I be grateful for what I have?" John looks at some examples in his life where he thought life would be better once he achieved his goal only to find short-lived pleasure.
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Connect with John:
- Subscribe on YouTube
- Visit the Website
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 49 of Beyond Labels & Limitations, John Graybill talks with Donavon Decker, who has LGMD2D. Donavon comes from a family of 8 with 5 of them being diagnosed with LGMD2D. His unaffected sister later had 2 children who were diagnosed with LGMD2I. Donavon also shares how the LGMD2D population were the first to participate in gene therapies, and he shares how the trial he was in showed promise. His sister, June Burney, who also has LGMD2D, was a part of a study in 2015 using the AAV-One time treatment. Donavon shares how his sister improved while in the study and up to 1.5 years after the study was concluded. Unfortunately, she began to lose what she gained shortly afterwards.
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Connect with John:
- Subscribe on YouTube
- Visit the Website
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 48 of Beyond Labels & Limitations, John Graybill shares what his whining cat showed him about his relationship with his 5 year old daughter and himself.
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Connect with John:
- Subscribe on YouTube
- Visit the Website
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 47 of Beyond Labels & Limitations, John Graybill talks with Brad Williams about his life with LGMD2B/R2. Brad shares how he waited nearly 18 years to find out what he had. Brad was a figure skater, runner, very athletic in his youth but around the age of 18 he noticed he couldn't stand on his toes. The gene for LGMD2B hadn't been discovered yet, hence he had to wait until it was. Brad also shares how important it is to be a part of registries. In order for researchers to figure out what's going on with you, they need to know you exist. The Jain Foundation is one registry for people with LGMD2B. But, the Jain Foundation can also help those who don't have a specific diagnosis get one.
Here's the Jain Foundation link: The Jain Foundation
Here's Brad William's YouTube Page: Brad Williams YouTube Channel
Here's the Speak Foundations Link to sign up for their registry: The Speak Foundation
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Connect with John:
- Visit the Website
- Subscribe on YouTube
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 46 of Beyond Labels & Limitations, John Graybill shares his experience of traveling to Abadiania, Brazil. It's in Abadiania where John of God's Healing Center, Casa De Dom Inacio, is located. This episode will be difficult for those who are deeply rooted in the Bible teachings. An open mind will be necessary for listening to this. John also wants to make a point that he is not trying to convert anyone but merely sharing his reason and experiences for traveling to Brazil. John also didn't put much stock into healing of the emotions, mental and spiritual but rather thought only of healing the physical. He was in for an eye opening experience. This is also where John met his wife.
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Connect with John:
- Subscribe on YouTube
- Visit the Website
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 45 of Beyond Labels & Limitations, John Graybill talks with author Robert Schwartz about his book, "Your Souls Plan". In this podcast, Rob shares how we planned our life before being born and how this plan is the reason for us coming into human form. Rob is one of those people who helped John shift his perspective from a "poor me" to a "this is for my higher good" perspective after reading "Your Souls Plan". By seeing your life as pre-planned, all the struggles in your life are approached from a place of, "How may I learn from this".
Robert Schwartz's website: Your Souls Plan
(This may be extremely difficult for some to listen to so an open mind is necessary.)
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Connect with John:
- Visit the Website
- Subscribe on YouTube
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
In episode 44 of Beyond Labels & Limitations, John Graybill talks about how being diagnosed with Limb Girdle Muscular Dystrophy was necessary in order for him to search for who he truly is. John use to think he was all of his accomplishments but when a disease takes away your physical abilities, you come to ask yourself, "then who am I?" After years of asking, John came to understand a bit more of who he is. He attributes his searching to Dr. Wayne Dyer, Eckhart Tolle, and Mooji.
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Connect with John:
- Subscribe on YouTube
- Visit the Website
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
In episode 43 of Beyond Labels & Limitations, John Graybill talks with Amanda about her journey from being diagnosed with Limb Girdle Muscular Dystrophy to Anti-HMGCR. At first Amanda shares optimism about going from an incurable genetic disease like LGMD to an autoimmune disease where there are treatments available. An important part of navigating this course is the "self talk" she has with herself. There were times where she didn't know how her life would turn out, especially when confronting falls or other mobility issues. Looking at the present and what she is currently going through was a big part of her success in dealing with both of these conditions.
The testing Amanda had done was called, "Myositis Panel". One of the antibodies they test for is Anti-HMGCoA Reductase Antibodies.
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Connect with John:
- Subscribe on YouTube
- Visit the Website
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
In episode 42 of Beyond Labels & Limitations, John Graybill shares how suffering showed up when he was playing with his daughter. He believed that when she was older, then playing with her would be more fun. What John didn't realize was how his beliefs about what he "should" be doing had programmed him. It was after examining his thoughts/beliefs that John saw how powerful an unexamined/unchallenged thought can be.
Wayne Dyer had given John a book titled, "What do you Really, Really, Really want for your children." This book helped John see that his daily interactions with his daughter was shaping how she would be in the future. And, it's important to be present with her; not just physically but mentally engaging with her.
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Connect with John:
- Subscribe on YouTube
- Visit the Website
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 41 of Beyond Labels & Limitations, John Graybill talks with Doctor Vovanti Jones, who has LGMD2B. Dr. Jones found out she had LGMD when she was in her 20's and while studying to become a doctor. Vovanti shares how she doubted herself at times that she could become a doctor. She shares how she had three factors against her becoming a doctor; 1, she was black, 2, she is a female and 3, she's disabled. This didn't stop Vovanti from becoming what she dreamed of at the age of 4 and that was she was going to become a doctor!
If you have LGMD2B and would like to join their community please check out the Jain Foundation
Also, if you don't know what type of LGMD you have, please contact the Jain Foundation and they may be able to help you get a specific diagnosis. (It is VERY important to get subtyped so that the world, researchers mainly, know that you exist)
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Connect with John:
- Visit the Website
- Subscribe on YouTube
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 40 of Beyond Labels & Limitations, John Graybill talks with Henry Eichner. Henry has a form of LGMD that is unspecified. Henry shares what his life has been like from before being diagnosed to what he struggles with today. Henry has also started a YouTube page dedicated to sharing his life with other people. You can visit his YouTube page here Rollin with Henry
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Connect with John:
- Subscribe on YouTube
- Visit the Website
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
In episode 39 of Beyond Labels & Limitations, John Graybill talks about when it was time for him to stop working. It wasn't an easy decision for John. Things to consider were, how was John going to make a living, support a future wife and child.
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Connect with John:
- Subscribe on YouTube
- Visit the Website
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
In episode 38 of Beyond Labels & Limitations, John Graybill shares his tips and tricks he has found useful for living with LGMD over the past 26 years. There are 7 tips and tricks and they are, Balance, Sitting down and getting up with a belt, Standing, Stretching, Supplements, Diet, and Appreciation. John told a story at a "Story Slam" in Denver about appreciating what you have. Here's the story: The Moth, StorySlam, Denver, Progress
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Connect with John:
- Subscribe on YouTube
- Visit the Website
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 37 of Beyond Labels & Limitations, John Graybill looks back to last year, March 16 2020, and what struggles he had with Limb Girdle Muscular Dystrophy. He also talks about what symptoms he's having today. The purpose of this exercise is to see if the symptoms are here to stay or are they just a phase he is going through.
The first episode John talked about his physical struggles was on episode 5.
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Connect with John:
- Visit the Website
- Subscribe on YouTube
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
In episode 36 of Beyond Labels & Limitations, John Graybill shares how shopping with Limb Girdle Muscular Dystrophy can be a struggle. When younger, stronger maybe not so difficult but what do you do when you're older and weaker and cannot get into dressing rooms? This is something John found challenging until him and his wife found a solution.
John also shares a bit too much on "Stack Height", "Toe Drop" and the "Weight" of a shoe but when you have a disease that effects your movements then all of these play a part in selecting the right shoe. New Balance Minimus with at most a 4mm toe drop is John's preferred show. But with fashion limiting this shoe, not by John's accord but rather the industry, the search for a new shoe is on and challenging.
As for pants, John found Duluth Trading Company's pants to be great. The pant is made from a stretchy material which helps "growing" into them as you get "bigger".
Good luck with your shopping!
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Connect with John:
- Subscribe on YouTube
- Website
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
In episode 35 of Beyond Labels & Limitations, John Graybill shares three experiences he had dealing with his limb girdle muscular dystrophy and wanting a better life. His first experience was with Wayne Dyer in Italy where Wayne carried John up a flight of stairs. When Wayne nearly fell with John on his back, Saint Francis appeared to Wayne and immediately Wayne's knee was healed and he ran up the stairs. John had a vision come to him while sitting outside meditating with the group that forever changed him. John shares a dream in which he asked Saint Francis for help and the dream changed him. Lastly, John shares a thought that came to him while Darcie, not yet his wife, pushed him in a wheelchair in Brazil.
The message John got and is reminded of is to never give up as anything is possible.
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Connect with John:
- Subscribe on YouTube
- Website
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
In episode 34 of Beyond Labels & Limitations, John Graybill shares some struggles he is having lately; ankle weakening, belly protruding forward, fingers sore, shoulders aching and his mind spilling out negative thinking. John has dealt with these struggles in the past, but this time he cannot escape. John shares how he deals with losing his physical abilities and the perspective he keeps while in the midst of it all. Acceptance is something you eventually have to come to so why not look at it while you're young, strong and able-bodied. The life you live is determined by how you want to live it NOT the disease.
Here's the book John mentioned reading at least once a year if not twice. It really helps you examine the thoughts you have and not just accept them because they came from you. Highly recommended book:
The Untethered Soul by Michael Singer
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Connect with John:
- Subscribe on YouTube
- Website
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
In episode 33, of Beyond Labels & Limitations, John Graybill talks about love and how important it is especially when you are diagnosed with Limb Girdle Muscular Dystrophy. John didn't love being him and it started in a seventh grade gym class when his peers made fun of the way he ran. From this mockery he started belittling and berating himself to the point where John lost all love for being him. The discovery John made in his late 20's/early 30's revealed that he had been living his life from a 12 year old's point of view. John had a choice to make and it was to live this way or to change.
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Connect with John:
- Visit the Website
- Subscribe on YouTube
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
In episode 32 of Beyond Labels & Limitations, John Graybill talks with Jill Millington about her life with Limb Girdle Muscular Dystrophy. Jill shares how at age 23 she first noticed something wasn't right when she couldn't step up onto the curb. She was diagnosed with LGMD in 2008 and then in 2018 Jill was officially diagnosed with LGMD2A or Calpainophty. Since then, Jill has gotten involved in advocating, managing a Facebook page, shooting "How To" videos and posting them on YouTube and also organizing fundraisers. She wants people to be aware of a "State Proclamation" in which on September 30th, every year, that day will be known as "LGMD Awareness Day". You can start a state or city proclamation by going to LGMD-info.org and following the steps to do so there.
(Co-Admin) Faith Above My Ability: Faith Above My Ability
State Proclamation: State Proclamation
Get in touch with Jill:
- Jill's Blog
- Jill's YouTube Page
- A Peek Into MD Jill's Facebook Page
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Connect with John:
- Website
- Subscribe on YouTube
- Email: BLLjenjohn@gmail.com
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"Desire To Inspire" TKG
In episode 31 of Beyond Labels & Limitations, John Graybill talks about stereotypes around what it means to be a man or woman. How we live in this world is largely from what society says a man or woman should be. What happens when we cannot conform to those standards? Is our sense of manhood or womanhood diminished? Discovering who you are is the only way to avoid the pitfalls of conforming to a set of standards one must live up too.
Embrace what you can do and bring that to the table!
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Connect with John:
- Visit the Website
- Subscribe on YouTube
- Email: Blljenjohn@gmail.com
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"Desire to Inspire" TKG
On episode 30, of Beyond Labels & Limitations, John Graybill shares how stretching showed him a part of himself he hadn't seen before. John talks about the importance stretching has had on his life, what areas of his body he stretches and how this has helped him stay mobile longer. The biggest gain John experienced had nothing to do with his body. The inner workings of his mind were revealed to him while questioning the whole stretching thing.
You can see John's videos on stretching by clicking the "Subscribe on YouTube" link below. There is a series of videos called "2008 LGMD Stretching Videos" under the tab "Playlists."
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Connect with John:
- Website
- Subscribe on YouTube
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
In episode 29, John Graybill talks about the brown spots around his ankles. These spots are called Hemosiderin. It started around 2008 with small brown, freckle-like spots in the ankle region. John started an alternative therapy in 2018 called, "Vector", a treatment that Dr. Rhodes from Texas came up with. The machine is designed to increase circulation, which people with muscular dystrophy struggle with. John didn't notice any improvements after one year of the therapy. However, a wound opened up around the ankle, a location where one of the electrodes was placed. John does not contribute the wound to the Vector treatment but the Vector may have brought it about sooner. After seeing his primary doctor, and a dermatologist for 2 months, John was finally sent to a wound clinic. There it was determined that John had a Venous Stasis Ulcer via an ultrasound of his leg. The way to treat this problem is with compression (compression stockings) and elevating the leg above the heart. John is on his way to recovery but if you notice brown spots around your leg, and possibly swelling, this could be a sign that you have a vein problem and it is advised you see your doctor.
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Connect with John:
- Website
- Subscribe on YouTube
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
John Graybill talks with Kathryn Bryant of the Speak Foundation about their newest project, "LGMD News", a magazine. This magazine is the first ever dedicated to bringing up to date research from clinicians to peoples homes via a magazine. In this magazine, LGMD News, you will only read about limb girdle muscular dystrophy, what research is happening, what organizations you can connect with-dealing with your specific type of LGMD, ask an Expert-where a doctor answers questions people submitted, Spotlighting an organization, basically anything you want to know about LGMD or where to go, you need to get this magazine. You can subscribe by going to The Speak Foundation and joining their "LGMD Patient Network" by clicking on that tab. It's so important to be a part of a patient led movement where "you" get to be the driving force towards a treatment instead of waiting for an organization that isn't patient led. The magazine comes out 4 times a year and is a MUST have if you have LGMD.
The Speak Foundation Patient Network
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Connect with John:
- Website
- Subscribe on YouTube
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
Season 2, episode 27, John Graybill talks about what is our underlying operating system at work. Often John isn't aware of it but when he reacts to situations in his life, then he becomes conscious of it. Where did this operating system come from? John shares how a 7th grade gym class experience controlled his thinking, behaving for years to come. It wasn't until his late twenties, early thirties, did John realize he was living from his 7th grade self. It's scary to see at 43 how one has been but it's better to see it at 43 than to never see it and have your life ruined by unaware behaviors that no longer suite you.
The book John mentions is by Michael Singer, "Untethered Soul".
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Connect with John:
- Website
- Subscribe on YouTube
- Email: Blljenjohn@gmail.com
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"Desire to Inspire" TKG
In the last episode of 2020, John Graybill talks about Christmas and how it impacts him now. He didn't fully appreciate those moments and now he has the opportunity to in this Christmas. John shares how his sister's passing has impacted him. What can he learn from all of this?
Also, Jen will no longer be on the Podcast as she is pursuing other parts of her life. John will miss Jen but totally understands her decision.
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Connect with John:
- Subscribe on YouTube
- BL&L Website
- Email: Blljenjohn@gmail.com
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"Desire to Inspire" TKG
On Episode 25 of Beyond Labels & Limitations the podcast, John Graybill sits down with his daughter, Chloe, to talk about limb girdle muscular dystrophy. John asks his daughter what he has, what help he needs from her and what is her wish for her dad. Chloe shares a Santa Claus plan she thought of which almost made John cry.
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Connect with John:
- Website
- Subscribe on YouTube
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
John Graybill shares his life with limb girdle muscular dystrophy and how changing his perspective changed everything. He shares how he viewed being diagnosed with LGMD and the impact that diagnosis had on him and the relationships he had after it. John shares how insecure he was and how that ruined his relationships. What ultimately mattered to John in the end was being happy. Are you happy with how your life is going? It's not too late to change your perspective in this life and live a great life. The choice is yours.
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Connect with John:
- BL&L Website
- Subscribe on YouTube
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
On today's podcast, number 23, John Graybill interviews his wife, Darcie. He asks her questions about how they met, what first caught Darcie's attention, did John's limb girdle muscular dystrophy have an impact on her and such. John didn't know if he'd ever find someone to love him despite a small voice/inner knowing that kept him from giving up. He never could have imagined finding such a wonderful, compassionate, caring, patient woman. What Darcie shows is that love truly matters most. John came from a superficial place where his attention was on the outside, the physical things like body shape, career, looks. Darcie didn't see any of that when she met John but instead saw past that. Darcie shares how love, emotional connection, spiritual connection matter more than what the body looks like.
*After listening to the podcast, John realized he talks too much and how important it is to listen more, especially to his wife.
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Connect with Jen and John:
- Website
- Subscribe on YouTube
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
Jen Ives and John Graybill talk with Kathryn Bryant of the Speak Foundation. Kathryn shares her limb girdle muscular dystrophy type 2I and how this disease saved her life. Kathryn has gone on to form the non-profit organization, from winning a contest, called "The Speak Foundation". The organization's mission is to improve the quality of life for those living with muscular dystrophy. Kathryn shares how important it is for those living with muscular dystrophy to be a voice in their future. This is what the Speak Foundation is doing. The Speak Foundation has a "Patient Network" that they would like for all those with LGMD to sign up for. The patient network is a way for the Speak Foundation to get information directly to you regarding a personal care attendant for helping you get ready for work, research that is being done, grants you may qualify for to help pay your bills due to covid, a mobility scooter and more. Kathryn emphasizes the importance of having a community led by individuals with the disease in making sure our voice is heard in the process of finding a cure/treatment. The Speak Foundation also hosts a yearly conference for individuals with muscular dystrophy in Atlanta, Georgia. This is a 3 day weekend retreat that is very handicap friendly in terms of hotel, getting around town, the time of day they meet. For more information and to sign up for the "Patient Network" go to:
The Speak Foundation
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Connect with Jen and John:
- Visit the Website
- Subscribe on YouTube
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
In episode 21, Jen Ives and John Graybill talk about friends. How did they make friends while having limb girdle muscular dystrophy? Did their muscular dystrophy prevent them from hanging out with friends, going to a friends house? What impact did their disease have on the friendship? Jen and John ask an important question regarding children who have muscular dystrophy and how do they make friends?
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Connect with Jen and John:
- Visit the Website
- Subscribe on YouTube
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
Jen Ives and John Graybill talk about their experiences with transitioning to a mobility scooter and power chair. Jen shares how she got around with her scooter and the setup she had installed in her 4-Runner. John received a scooter from Clifton Lewis, "CRL Good Life Foundation" and how he didn't even want it at first. Jen and John share with you the thinking process and challenges they encountered when it was time to transition and how those decisions have given them freedom.
Clifton R. Lewis Good Life Foundation
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Connect with Jen and John:
- Visit the Website
- Subscribe on YouTube
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
Jen Ives and John Graybill give an update on their health from a podcast they did 6 months ago, March 2020. In this podcast, they talk about what aliments they had back then and if they have gone away or were the start of their physical health decline.
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Connect with Jen and John:
- Subscribe on YouTube
- Visit the Website
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
Jen Ives and John Graybill talk about what's bothering them. John shares his frustration with struggling to get up from a chair, walking, his mind telling him stories of "it not working out". How does John and Jen deal with life when these situations come up? And they do come up more often than they think.
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Connect with Jen and John:
- Subscribe on YouTube
- Visit the Website
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
Jen and John share what supplements they take to help keep their bodies in optimal shape.
Jen takes Vitamin D3, Zinc, fish oil and apple cider vinegar.
John takes CuraMed's "Curcumin", DHA, Vitamin D3 and apple cider vinegar.
Because Jen and John take these supplements doesn't mean you'll get the same benefit. So be sure to talk to your doctor before starting any of these supplements.
When you get your blood drawn be sure to ask for your Vitamin D level and CRP (C-reactive protein). The CRP test measures the overall inflammation in your body. Making sure to keep your CRP below 1.0 is a good idea as inflammation is at the root of diseases.
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Connect with Jen and John:
- Visit the Website
- Subscribe on YouTube
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
Jen Ives and John Graybill talk with Brad Williams, of the Jain Foundation, about the upcoming FDA Listening Session for LGMD. This is the first ever listening session in which the FDA will listen to LGMD individuals about how their type of LGMD has impacted their life. The session is set for October 20, 2020.
Jen and John ask Brad questions like, how often dose the FDA listen to patients, what is a listening session and why is it important?
FDA Listening Session
Brad William's YouTube Page
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Connect with Jen and John:
- Subscribe on YouTube
- Visit Website
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
How do you come to terms with a disease that takes away your physical abilities? Jen Ives and John C. Graybill II talk about their coming to terms and what that looked like early on. Jen embraced her diagnosis while John denied it. Eventually both came to an understanding that they are more than the physical being and that their life can be something wonderful!
John brings up a concept coined by Victor Frankl in the book, "Mans search for meaning", called Delusion of Reprieve. Are we, those who have LGMD or any disease that robs you of being physical, under this delusion?
We must look at our life and examine it moment by moment, as Jen says, and realize we are not our thoughts, feelings. We are more than that.
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Connect with Jen and John:
- Visit Website
- Subscribe on YouTube
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
Jen Ives and John Graybill talk about living with limb girdle muscular dystrophy and how it relates to moving around in bed. What type of bed is best, sheets, bed height? How do you sleep at night and what can you do to ensure you sleep better? Jen and John talk about their experiences and how sleeping over the years has changed.
Jen shares how her Flex-A-Bed has helped her maintain her independence while John enjoys his Sleep Number bed. Both agree that the Pillow Top beds are not a great choice when you've become weaker and unable to turn over in bed.
The beds Jen and John sleep on:
- Flex a bed
- Sleep Number
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Connect with Jen and John:
- Subscribe on YouTube
- Visit Website
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
How do you balance eating what you love and staying healthy? It's a difficult task when in the end, if there's no cure/treatment, you'll end up losing what you have anyway. John Graybill and Jen Ives share what it is like eating the way they do and the struggles they've encountered while trying to maintain their weight. John was told by his neurologist years ago the importance of maintaining his weight. When you get older, weaker, the weight you now carry will make mobility harder for you and those who take care of you. So be careful about what you eat. But, again how do you enjoy life without having to sacrifice what you eat? It's a difficult choice but one that has to be examined.
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Connect with Jen and John:
- Subscribe on YouTube
- Visit Website
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
Jen Ives and John Graybill talk about how God/Spirituality came to them. Jen shares how her dysfunctional upbringing helped her turn to God. John shares how Buddhist practices helped him question the events in his life and look at life from a different perspective. Jen also shares a verse from the Bible and a prayer at the end.
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Connect with Jen and John:
- Subscribe on YouTube
- Visit Website
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
Jen Ives and John Graybill talk about what they wanted to be when they grew up. How did they attend college with their disability? Could they go back to school now in their current physical condition? What motivates you to want to do more with your life than just work? Jen and John want you to look at where you are in your life and explore what options are there for you. What do you want out of your life?
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Connect with the show:
- Visit Website
- Subscribe on YouTube
- Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
Jen and John talk with their friend, Clifton Lewis, about living alone and what actions one should take to live safely. Oh, and Cliff is also raising 2 kids under the age of 6 by himself! Cliff shares some tips that will help you if you find yourself in this situation.
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Connect with the show:
- Visit website
- Subscribe on YouTube
- Email: BLLjenjohn@gmail.com
Connect with Clifton Lewis:
- Connect on Instagram @crlgoodlife
- Visit website
- Email: clewis@crlgoodlife.org
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"Desire to Inspire" TKG
Jen and John examine situations in their life as all or nothing. Is life with muscular dystrophy an all or nothing approach? Jen shares how her recent falls have helped her see life from a different perspective. John shares his recent struggles and how he looks at them. At the end of the podcast John shares a Taoist Farmer story that you're gonna want to hear.
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For more information and how to connect with Jen and John, please visit us at:
Website:Beyond Labels & Limitations
YouTube: YouTube Channel
Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
Jen and John talk with Cory Lee, a well traveled young man living with SMA. Cory Lee has traveled to 37 countries, 7 continents, and all before the age of 30! Cory shares his experience with flying and booking hotels.
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Cory's Website: Curbfreewithcorylee.com
Cory's Book: Let's Explore with Cor Cor
John's Website: Beyond Labels & Limitations
John's YouTube page: YouTube
Email: BLLjenjohn@gmail.com
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"Desire to Inspire" TKG
What's it like raising a child while you have a disability? Jen and John share their experience with raising a boy and a girl.
John's YouTube Page: YouTube
Website: BL&L
Email: BLLjenjohn@gmail.com
"Desire to Inspire" TKG
Jen and John share some of their personal dating stories. They'll also talk about what lead them to their spouse.
Check-In: discuss coronavirus toll and John's fall
Topic: Dating with a Disability. John share's a couple dating experiences he's had and what he got from them.
Take Away:
John's-Love yourself first. Make a list of the "Must Haves" and "Must not haves" when it comes to what you want in a partner.
Jen's-Invest in yourself by getting clear and honest with who you really are. Not all dates are created equal. If the relationship is not real, what's the point in continuing it.
BL&L: Beyond Labels & Limitations
John's YouTube Page: John's YouTube
Email address: BLLjenjohn@gmail.com
Tony Robbins Love and Passion: Tony Robbins Love and Passion
"Desire to Inspire" TKG
Jen and John share their current physical struggles. The goal here is to look back in six months, September 2020, to see if these struggles were a blip or part of the progression of LGMD.
Bio Compression Sequential Circulator: Bio Compression Sequential Circulator
John's YouTube Channel: John's YouTube Channel
Beyond Labels & Limitations Website: Beyond Labels & Limitations
Email address: www.BLLjenjohn@gmail.com
"Desire to Inspire" TKG
In episode 4, Jen and John interview Jen's husband, Keith, on how he sees LGMD and what it's like caring for someone he loves.
John's website: Beyond Labels & Limitations
John's YouTube page: John Graybill II
Stand Aid Link: Stand Aid
Email: BLLjenjohn@gmail.com
"Desire to Inspire" TKG
In this episode, Jen and John talk about falling and the effects it has on them. They also share ways to minimize falling and a few takeaways to help you, if you find yourself in these situations.
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For more information and how to connect with Jen and John, please visit us at: Beyond Labels & Limitations website:www.BeyondLabelsLimitations.com
By Email:
BLLjenjohn@gmail.com
John Graybill's YouTube Channel
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“Desire to Inspire” - TKG
Jen and John talk about when they noticed the first signs that something wasn’t right with them, how it was interpreted by their peers, and eventually getting diagnosed.
They also share on this episode some advice for those of you with the diagnosis and those of you who haven’t gotten their exact diagnosis yet.
FREE patient programs to get a genetic diagnosis are:
- Invitae Program: https://www.invitae.com/en/sponsored-testing/
- Perkin Elmer Lantern Program: https://www.perkinelmergenomics.com/lanternproject/
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For more information and how to connect with Jen and John, please visit us at: Beyond Labels & Limitations website:www.BeyondLabelsLimitations.com
By Email:
BLLjenjohn@gmail.com
John Graybill's YouTube Channel
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“Desire to Inspire” - TKG
Jen and John give a brief introduction into who they are and what they want to accomplish with this podcast.
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For more information and how to connect with Jen and John, please visit us at:
Beyond Labels & Limitations website: www.BeyondLabelsLimitations.com
Email:
BLLjenjohn@gmail.com
John Graybill's YouTube Channel
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“Desire to Inspire” - TKG