Thanks for tuning in to the Twisted Spine podcast. Each week I will offer listeners a fresh perspective to living with SCI. I will cover topics that range from practical education and applicable life hacks to the emotional and mental struggles we share and the tough issues that impact our community. Episodes will include stories from my own experiences, interviews with experts and peers, and strategies you can apply to your own life.
I should probably re-listen to this before I just send it out, but based on the title, I can bet I know the core content in this show. Spoiler alert, no one should be on solid tires, unless you are in very unique environments and or places for vocation.
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Great scenes with the Jason Street character in this show. He interacts with Tyra who comes in to say how sorry she is and also tell Jason that Tim is too scared to come for a visit. Street tells Her that he does not know anything about him and Herc has na answer for him that sets the tone for the Jason Street character.
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6, Jason Street gets hurt on the field in the home opener. His injury sets off a series of events that can resinate with SCI individuals. In this short show I cover some highlights and events that are the touchstones of this awesome TV series.
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Do you know the story of #6, Jason Street? Then you, my friends know Friday Night Lights, one of the greatest television shows after 2000. Coach Eric Taylor, played by Kyle Chandler and his wife, played by Connie Britton.... The cast is great and the show is just about perfect. I will talk about 6, and everything I can about his injury, Texas Forever and beyond.
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I know it has been a long time. Much too long. Thanks to my tiny audience for hanging with me. More to come!
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In this episode I discuss a few points on things that AB's do that really can get under our skin, be annoying and frustrating. I cover a few different things and give some example of things that make us feel a bit marginalized by people who do not know what they are doing. Let's not forget, most of us would be deemed this label if it were not for the spinal cord injury. I would need to be educated about equal access along with several other things that I had no idea about prior to me paralysis.
Here is the short list of things that came to the surface.
We can do things that in the end will alleviate the fear of our injuries from the able-bodied community, but we have to be willing to engage and not be afraid to talk about our disabilities and acknowledge our limitations. We need to be the education are needing if we ever really expect to move the needle in the right direction.
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Bearings from wheelchairbearings.com are made specifically for wheelchair wheels. Get more performance out of your chair. The simple and fast way to feel the difference between old and new bearings, not to mention the feeling of working on your own equipment.
Listeners of the show get 10% off bearings and tool. Enter twistedspine10 at checkout!
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In this show I discuss a small handful of things that really bug me that I see in our SCI community. We are able to make decisions about how we live with this SCI, but we are also a reflection of each other and what we do in public will give out a perception of how we all live and operate in the world.
There are things I see that hold us back and prevent of from being viewed as living within our control. It all my be optics, but we do not always paint the best possible picture to the public of living with the SCI.
We have the power to make our own lives better and easier. Here is a list of some things that I see that really bug the sh*t out of me (the short list) and that are holding some of you back. You wan to know why you are not dating, feeling engaged or overall depressed? Take a look at some of these things.
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www.wheelchairbearings.com
Bearings from wheelchairbearings.com are made specifically for wheelchair wheels. Get more performance out of your chair. The simple and fast way to feel the difference between old and new bearings, not to mention the feeling of working on your own equipment.
Listeners of the show get 10% off bearings and tool. Enter twistedspine10 at checkout!
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Not only does sustaining a SCI change your life, it associates you with everyone else that also deals with the same disability or 'mobility impairment'. Like it or not we are all lumped in together much like other minority groups. We are experience many of the same things, living similar lives and even have similar routines. We are able to ask each other pointed questions about best practices in bladder and bowel care, for example and I do not think there are many other sp called 'groups' that can speak so freely about some of these topics. We can also discuss different types of equipment that has helped enhance our lives.
How is it then that we all recover and respond so differently to the SCI? Why is it that some of us live out ideas of self esteem and identity while others loose a sense of self and struggle to rediscover purpose? I try to address some of this in this episode while also acknowledging some of my own shortcomings. I touch on why I feel there are some living with the SCI who let themselves be overwhelmed by the injury. Why are we so afraid of the injury and why would we cling to past, or try to if it is preventing us from moving forward and regaining control of our lives, even if it means not walking again?
In large part we must also recognize how it is not only the challenge of living with a chair/mobility device, but it is all of the other little things that come along with the SCI. Having to use catheters for example or taking the chair apart when getting in and out of the car, or just needing a different type of vehicle all together. These are all things that will eventually just become a part of the routine, so the things that can blind side us are the things that we do not expect like a pressure sore or UTI. These are the REAL hardships and things we need to pay attention to that we never did before our SCI. So, in a lot of ways we are the same, but also in other ways we are worlds apart.
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www.wheelchairbearings.com
Bearings from wheelchairbearings.com are made specifically for wheelchair wheels. Get more performance out of your chair. The simple and fast way to feel the difference between old and new bearings, not to mention the feeling of working on your own equipment.
Listeners of the show get 10% off bearings and tool. Enter twistedspine10 at checkout!
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In this quick bonus episode I cover 8 simple tips to keep in mind as you are reentering the dating scene.
Go easy on your self and have reasonable expectations. You will get this! Take your time and remain hopeful.
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www.wheelchairbearings.com
Bearings from wheelchairbearings.com are made specifically for wheelchair wheels. Get more performance out of your chair. The simple and fast way to feel the difference between old and new bearings, not to mention the feeling of working on your own equipment.
Listeners of the show get 10% off bearings and tool. Enter twistedspine10 at checkout!
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Exploring new relationships post injury can be intimidating and difficult. People have different ideas about wheelchair users and we can bet there are some questions that you may be ready to answer and others that you are not ready to answer. Common misconceptions can be as simple how we drive to how we have sex and use the bathroom.
In this first part, I look at what it takes to self inventory and setting yourself up for success.
What tools do you have to work with?
Are you developing confidence in your routine?
Do you have control of your body and bodily functions (bowel and bladder)?
Are you finding purpose, post injury?
We dig deeper into some of these things as we explore this hot topic in our community over the next several episodes.
Please check out our sponsor!
www.wheelchairbearings.com
Bearings from wheelchairbearings.com are made specifically for wheelchair wheels. Get more performance out of your chair. The simple and fast way to feel the difference between old and new bearings, not to mention the feeling of working on your own equipment.
Listeners of the show get 10% off bearings and tool. Enter twistedspine10 at checkout!
Support the show (https://www.patreon.com/twistedspine)
Travel, being dehydrated and a change in diet can lead to unpleasant surprises.
In this episode I share a story of getting on the toilet, having a successful moment and then getting into the shower to clean up. Then, the SURPRISE poop makes an appearance. Have you been in this situation? Do not let it get you down. Even after 2 decades it can cause a lot of anxiety and confusion.
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www.wheelchairbearings.com
Bearings from wheelchairbearings.com are made specifically for wheelchair wheels. Get more performance out of your chair. The simple and fast way to feel the difference between old and new bearings, not to mention the feeling of working on your own equipment.
Listeners of the show get 10% off bearings and tool. Enter twistedspine10 at checkout!
Support the show (https://www.patreon.com/twistedspine)
Get rid of the clutter! Find a place for your things so you do not lose them or misplace them.
In this 5th and final episode on hygiene, I discuss some strategies for you to think about and how to get a grip on your 'new' routine.
Please check out our sponsor!
www.wheelchairbearings.com
Bearings from wheelchairbearings.com are made specifically for wheelchair wheels. Get more performance out of your chair. The simple and fast way to feel the difference between old and new bearings, not to mention the feeling of working on your own equipment.
Listeners of the show get 10% off bearings and tool. Enter twistedspine10 at checkout!
Support the show (https://www.patreon.com/twistedspine)
Whether we like it or not, what we wear says a lot about who we are. Our fashion choices sends a message regarding the culture you associate with and the activities and or hobbies you enjoy. Our clothing and style choices post injury should not change, but there are some things to consider when shopping for clothes that will fit appropriately, look good and last a long time.
There are so many different brands available to us as consumers, we can find most anything online. I have featured a favorite pant from Western Rise has jus the right amount of material and a great fit. I also love button down shirts from UNTUCKit. They are perfect for wheelchair users. Since they are cut short and intended NOT to be tucked in, you will not have a ball of unused material resting in your lap. Other brands that I go to for quality everyday clothing, in no particular order are: FILSON, VANS, Patagonia. I also love to buy my plain white T shirts from CostCo (Kirkland brand).
The message here, there are some brands and articles that will just fit better than the same piece from a different brand. Do not be afraid to experiment with different styles and cuts. Lastly, do not be afraid to spend a little bit more on a good durable piece of clothing that will last 3 times as long as something that may only be 20% less. You will not ever regret having a piece of clothing that you know will stand up to your lifestyle over many years.
Please check out our sponsor!
www.wheelchairbearings.com
Bearings from wheelchairbearings.com are made specifically for wheelchair wheels. Get more performance out of your chair. The simple and fast way to feel the difference between old and new bearings, not to mention the feeling of working on your own equipment.
Listeners of the show get 10% off bearings and tool. Enter twistedspine10 at checkout!
Support the show (https://www.patreon.com/twistedspine)
Are you keeping your chair, an extension of your body, clean? Are you intimately familiar with you chair? If you are not, you should be. You should know the seat width, seat depth, rear floor to seat and front floor to seat. We should know our chair the same way know the fit of a good shoe or nice pair of jeans. Our chairs are the lifeline to our mobility and our freedom. If we do not treat our equipment right, it will fail us, but if we take care of our stuff and treat it right, we will have good looking and more importantly, good performing equipment. Respect your chair and treat it like a race car.
Beyond all the performance we must try to keep our gear fresh and clean. Use more then one cushion cover and swap them out as they get smelly! YES, they stink and stink bad. What do you expect? Your ass has been sitting on it all day, sweating and gathering up all that awesome residual pee and dirty skin. It is important that we remember to do our best to stay up on our chair cleanliness.
Please check out our sponsor!
www.wheelchairbearings.com
Bearings from wheelchairbearings.com are made specifically for wheelchair wheels. Get more performance out of your chair. The simple and fast way to feel the difference between old and new bearings, not to mention the feeling of working on your own equipment.
Listeners of the show get 10% off bearings and tool. Enter twistedspine10 at checkout!
Support the show (https://www.patreon.com/twistedspine)
How do we maintain good hygiene? One way is to have confidence in our bowel and bladder routine. This is one of the most difficult, if not the most difficult things to figure out for people living with spinal cord injuries. If we can tame the beast that is our bowel and bladder, we will be able to move on and fully participate in life without reservation. Some simple tips and encouragement regarding this area of hygiene and health. Be mindful of your hydration, what you are eating and your activity level. Pay attention to the indicators your body gives and find out what they mean.
One quick tip that given me confidence in my bowel program is the Squatty Potty. I wish someone had told me about this at the beginning of my injury. If you do not already have one of these, I would recommend you get one today!
Please check out our sponsor!
www.wheelchairbearings.com
Bearings from wheelchairbearings.com are made specifically for wheelchair wheels. Get more performance out of your chair. The simple and fast way to feel the difference between old and new bearings, not to mention the feeling of working on your own equipment.
Listeners of the show get 10% off bearings and tool. Enter twistedspine10 at checkout!
Support the show (https://www.patreon.com/twistedspine)
What does good hygiene look like? Where do we start?
In this first installment of the hygiene series, I discuss hand health. I share my regimen and the things I do to try and keep good clean, presentable hands. Having nice looking hands does not mean your hands are soft. Take a chance on trying some of these tips and notice the change.
For more information on the Lost Range Skin Salve, check out www.lostrangecbd.com
To get a copy of the August edition of the Twisted Spine Newsletter, please email ryan@twistedspine.com
Please check out our sponsor!
www.wheelchairbearings.com
Bearings from wheelchairbearings.com are made specifically for wheelchair wheels. Get more performance out of your chair. The simple and fast way to feel the difference between old and new bearings, not to mention the feeling of working on your own equipment.
Listeners of the show get 10% off bearings and tool. Enter twistedspine10 at checkout!
Support the show (https://www.patreon.com/twistedspine)
I really enjoy this metaphor and I heard it a long time ago. It resonated with me and has stuck with me for years. Sometimes it is easy to forget the most simple lessons. Not being aware or not understanding the consequence of our surroundings can be dangerous to our mind and body.
Please check out our sponsor!
www.wheelchairbearings.com
Bearings from wheelchairbearings.com are made specifically for wheelchair wheels. Get more performance out of your chair. The simple and fast way to feel the difference between old and new bearings, not to mention the feeling of working on your own equipment.
Listeners of the show get 10% off bearings and tool. Enter twistedspine10 at checkout!
Support the show (https://www.patreon.com/twistedspine)
This week I am stoked to have KInzie Dickman, from West Virginia. Injured in 2017, KInzie has an incredible diagnosis and her story of recovery is a wild ride. Join me as we learn more about KInzie. She shares how she was able to overcome depression that comes along with the injury and she tells some great stories about her recovery and support. She has continued wake boarding at cable parks and skating long boards. If there was a contest for 'Leaning into the injury', this chick would be at the top of my list.
Kinzie has turned my head and given me a reason to take notice of what she has done for herself not only physically, but mentally, emotionally and spiritually. Now is she is leading the way for others in a similar position, living with SCI. Kinzie is starting Because of Brandi, a 501c3 non-profit. Because of Brandi, KInzie has a new wheelchair and this was the catalyst Kinzie needed to motivate her to help others get quality equipment from loved ones that have passed away after living with SCI. For more information on Kinzie or Because of Brandi, please see the links below.
On Facebook:
https://www.facebook.com/kinzie.houston
https://www.facebook.com/becauseofbrandi/
On Instagram
@therollingdreadhead
@becauseofbrandi
Because of Brandi website coming soon! :-)
Please check out our sponsor!
www.wheelchairbearings.com
Bearings from wheelchairbearings.com are made specifically for wheelchair wheels. Get more performance out of your chair. The simple and fast way to feel the difference between old and new bearings, not to mention the feeling of working on your own equipment.
Listeners of the show get 10% off bearings and tool. Enter twistedspine10 at checkout!
Support the show (https://www.patreon.com/twistedspine)
I have had some interesting challenges recently... In this episode I discuss one that is significant and effects not only me, but those around me. Accessibility. What does it mean to you? Has it change since your injury? What is labeled as accessible for one person might be a nightmare for someone else.
Please check out our sponsor!
www.wheelchairbearings.com
Bearings from wheelchairbearings.com are made specifically for wheelchair wheels. Get more performance out of your chair. The simple and fast way to feel the difference between old and new bearings, not to mention the feeling of working on your own equipment.
Listeners of the show get 10% off bearings and tool. Enter twistedspine10 at checkout!
Support the show (https://www.patreon.com/twistedspine)
One of the most humiliating and embarrassing moments... falling out of your chair. This happened to me recently as I was walking my dogs in broad daylight with cars driving by. I was beyond angry and felt completely helpless. Here all the crazy details in this weeks show.
Please check out our sponsor!
www.wheelchairbearings.com
Bearings from wheelchairbearings.com are made specifically for wheelchair wheels. Get more performance out of your chair. The simple and fast way to feel the difference between old and new bearings, not to mention the feeling of working on your own equipment.
Listeners of the show get 10% off bearings and tool. Enter twistedspine10 at checkout!
Support the show (https://www.patreon.com/twistedspine)
Are you a complete spinal cord injury, or incomplete? It is one of the most asked questions in the community and carries a lot of weight for some on how they view their own injury level. In this episode I discuss the nuance between a complete injury versus incomplete. What is the difference between your 'injury level' and 'functional level'?
I touch on the American Spinal Cord Injury Association (ASIA) definitions of complete SCI and incomplete SCI and I talk about classification. Links below will take you to some sources on complete versus incomplete. You will also see the ASIA classification evaluation and assessment worksheet.
Underlying message here is to NOT get too caught up on these details. We must take what we have, complete or not and make the most of it. We must learn to make the best of our situation, no matter the circumstance. Maximize your functional level and do not worry about your injury level!
To subscribe to the monthly newsletter and check out the available services please go to www.twistedspine.com
https://asia-spinalinjury.org/wp-content/uploads/2019/10/ASIA-ISCOS-Worksheet_10.2019_PRINT-Page-1-2.pdf
https://www.christopherreeve.org/living-with-paralysis/newly-paralyzed/how-is-an-sci-defined-and-what-is-a-complete-vs-incomplete-injury
https://asia-spinalinjury.org/international-standards-neurological-classification-sci-isncsci-worksheet/
Please check out our sponsor!
www.wheelchairbearings.com
Bearings from wheelchairbearings.com are made specifically for wheelchair wheels. Get more performance out of your chair. The simple and fast way to feel the difference between old and new bearings, not to mention the feeling of working on your own equipment.
Listeners of the show get 10% off bearings and tool. Enter twistedspine10 at checkout!
Support the show (https://www.patreon.com/twistedspine)
The anniversary of your injury. How do you acknowledge the annual date that is the marker on the calendar for your injury anniversary? Do you celebrate it or do you feel it is something you do not want to think about?
Personally, I look at my anniversary as a Spinal Cord Injury Birthday. This past week marks 30 years for me! That is 10,950 days and counting.
Please subscribe to the Twisted Spine Newsletter. You can sign up on the website! Please share and leave a review!
Please check out our sponsor!
www.wheelchairbearings.com
Bearings from wheelchairbearings.com are made specifically for wheelchair wheels. Get more performance out of your chair. The simple and fast way to feel the difference between old and new bearings, not to mention the feeling of working on your own equipment.
Listeners of the show get 10% off bearings and tool. Enter twistedspine10 at checkout!
Support the show (https://www.patreon.com/twistedspine)
In recognition of PTSD Awareness Month, I am discussing this disorder and how it plays into our SCI. You may have PTSD and not realize the signs. In this show I talk about what to look for in PTSD and how it can have an effect on other areas of your life.
I also discuss #PTSDawareness in my most recent blog post.
The numbers are pretty staggering. I am of the opinion that people living with SCI cannot escape PTSD. How do we manage PTSD? How do we learn to cope with PTSD?
Signs of PTSD post injury (SCI):
Negative Effects:
Treatments:
Until the end of June and in recognizing #PTSDAwarenessMonth, I am offering $50 off my Twisted Spine Package. Just enter PTSDJune at checkout.
www.twistedspine.com
Please check out our sponsor!
www.wheelchairbearings.com
Bearings from wheelchairbearings.com are made specifically for wheelchair wheels. Get more performance out of your chair. The simple and fast way to feel the difference between old and new bearings, not to mention the feeling of working on your own equipment.
Listeners of the show get 10% off bearings and tool. Enter twistedspine10 at checkout!
Support the show (https://www.patreon.com/twistedspine)
With so many options when it comes to cushions, how do you find one that works?
The short answer, pressure mapping. But what really makes a good cushion and how do we know it will prevent skin breakdown?
We must be aware of the three primary contributors of skin break down:
If we can prevent these 3 things from occurring, we can be more successful in preventing compromised skin.
The cushion I use is the RoHo (Permobil Seating and Positioning) Hybrid Elite. It is a combo of a firm cushion with the benefits of the RoHo air, where It really counts, on the ischial bones.
Below are links to some of the more popular wheelchair cushions.
Some cushions that are listed may be for sitting comfort and not intended for full time wheelchair users. Be sure to do your research!
Please check out our sponsor!
www.wheelchairbearings.com
Bearings from wheelchairbearings.com are made specifically for wheelchair wheels. Get more performance out of your chair. The simple and fast way to feel the difference between old and new bearings, not to mention the feeling of working on your own equipment.
Listeners of the show get 10% off bearings and tool. Enter twistedspine10 at checkout!
Support the show (https://www.patreon.com/twistedspine)
This week it is all hand rim talk. With all of the different options, how do you choose a good hand rim that you can have confidence in? What do you look for in a hand rim?
Below are some links to some brands mentioned in the show. Have fun exploring these sites. It is good to see what is being offered and the new technology being offered when it comes to hand rims.
Please check out our sponsor!
www.wheelchairbearings.com
Bearings from wheelchairbearings.com are made specifically for wheelchair wheels. Get more performance out of your chair. The simple and fast way to feel the difference between old and new bearings, not to mention the feeling of working on your own equipment.
Listeners of the show get 10% off bearings and tool. Enter twistedspine10 at checkout!
Support the show (https://www.patreon.com/twistedspine)
First remote ZOOM interview!
Thanks to Andy Blood (Blood Brothers Foundation) and Brandon Stewart (RevLine Digital) for taking the time to talk about and promote the Off Road Party in Grand Junction, Colorado, June 11-13, 2021. Both guys have incredible backgrounds and share a brief glimpse into their past, but the focus here is the OFF ROAD PARTY! Time for that #throttletherapy.
Off road trucks, side x sides, Kart Racing, camping, music, food, fireworks, family fun! A once in a lifetime opportunity to drive like your hair is on fire! Contact Blood Brothers Foundation for information on volunteering and sponsorships.
For more information visit www.bloodbrothersfoundation.org
Special Thanks to; www.revlinedigital.com, www.highfivesfondation.org, www.boxwheelchairs.com, www.actiontrackchair.com, www.wheels2walking.comFor more information on Twisted Spine, Coaching and Efficiency Training, please visit, www.twistedspine.com
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New wheels will not make your chair faster, but listening to this show will.
Find out how center of gravity can be the difference between your chair feeling like a Cadillac or performing like a Ferrari.
SHOW NOTES:
What is center of gravity (CG)?
How do we measure CG?
What does it change on your chair?
Can you have too much CG?
+
Listener Questions: Thanks, Dave in PA and Steve in MS. I appreciate the questions!
Please check out our sponsor!
www.wheelchairbearings.com
Bearings from wheelchairbearings.com are made specifically for wheelchair wheels. Get more performance out of your chair. The simple and fast way to feel the difference between old and new bearings, not to mention the feeling of working on your own equipment.
Listeners of the show get 10% off bearings and tool. Enter twistedspine10 at checkout!
Support the show (https://www.patreon.com/twistedspine)
From top executives to the most elite athletes, the highest performers in the world all use and have a coach. Can you benefit from coaching? In this episode I break down how and why coaching works.
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Do you know what bearing spacing is and how it effects your axle length? Learn the formula to discovering your bearing spacing, axle length and more!
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Redefining recovery. Learn how to break the rules of recovery. Shift your thinking and expose the answer to what it means to be recovered from SCI. It is not what you think.
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Builders from all over the world and what you need to know. Materials and design, order forms and more! What to consider if you are in the market for a new manual rigid frame wheelchair.
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In this show I discuss letting go of the past, so we can move forward. What are you hanging on to? How can you move on if you cannot be free of the past?
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Everything you wanted to know about wheelchair tires and more! Brands, weights, right down to tread patterns and specific use cases. Listen now about the only part that touches the ground.
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More unravelling the mysteries of the wheelchair wheel. I talk about a specific brand, weights, spoke counts and more!
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Unpacking the mystery behind the wheel chair wheel, sizes and much more.
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Intro to Twisted Spine. What you can expect from the show and a short history of my experiences.
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How do we deal with unmet expectation? You have the power to write your own story. Be in control!
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Story time with Twisted Spine! This is a fable about a king and his search for an heir that helped me see my paralysis in a different way. I hope it will do the same for you.
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In this episode I discuss the mental game of disability and the preconceived notions about what disability is versus what it means. Has it changed for you?
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