My Adventure in a Wheelchair

My Adventure in a Wheelchair
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Many of you who follow my column know that I focus on how those of us with a disability stay strong mentally and physically. I have also written about advocating for ourselves as patients and effecting positive change in society.

I will turn 61 next month. I began having symptoms of muscle loss when I was 47. I have limb-girdle muscular dystrophy type 2L. My muscle loss has been slow but steady. I walk using a cane or hiking stick. Stairs and chairs are the most difficult to navigate. To live creatively, I continue to look for ways around societal obstacles.

In looking for ways to thrive, a new solution came up in response to the lack of accessible seating in public venues. I have written about the importance of a variety of seating at sports stadiums, theaters, and other public places. I can drive myself to a Chicago baseball stadium, park, walk to the entrance, and get myself to the accessible seating area. But there are no seats that I can get out of without hurting my shoulders.

This dilemma came up last month as a friend and I prepared to go to a football game in Wisconsin. I checked the available seats on the stadium’s website, but I knew from battles with other stadiums that I would not be able to advocate for a more friendly seat. I needed a different solution.

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My friend and I came up with an idea: What if I brought my own chair? I have a folding chair that is light and easy to carry. But as we talked about it, we realized that carrying a chair into the stadium might not be workable. My friend then suggested the idea of using a wheelchair he had at home.

Except for transports at the hospital, I had never used a wheelchair. Well, I did have one great ride at an airport in Dublin, when I messed up on my transfer gate. A cool Irishman threw me in a wheelchair and pushed me across the airport to get me to my gate in the nick of time.

We decided that the wheelchair plan might work. Wheelchairs are wider and allow me to turn my body and get my left arm on the seat to push myself up. We did a test run a week before the game, and I was confident that I wouldn’t have to struggle to get up.

It proved to be a better solution than I had imagined. It was a night game, and parking was quite a distance from the stadium. The path to the gate was packed with people. I was able to sit in the chair and my friend provided the needed horsepower. I stayed seated the entire game. When we left, it was an easy ride back to the car and out of the seat.

With respect to regular wheelchair users, I realize that my experiment was limited. I learned that I was on a different level from the public. Almost no one made eye contact with me; they never really saw me. The future may bring more of these experiences, and I will learn the pros and cons.

My goal is to buy a wheelchair before next year’s baseball season. I plan to look for one that is higher and wider to make it easier to push myself out of the seat without putting too much pressure on my left shoulder. I saw one model that is advertised as lightweight, foldable, and with electric power.

I would love to hear suggestions from my readers. What are your thoughts and experiences? We learn by sharing!

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Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to muscular dystrophy.

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11 comments

  1. Samuel Dalton says:

    Hi Ralph!
    I have the exact same LGMD 2L as you. I am 62. But mine started a long time a go. I was diagnosed with a “quadriceps myopathy” in 1997. I had been falling down unexpectedly. My disease has progressed to the point where I can no longer walk. And it has progressed to my arms as well so now it is a struggle to get up and down. I use mobility scooters to get around – I have a fleet of them. One that I leave in my vehicle and one on every floor of my house. Like everything else with this disease…you start out being embarrassed at doing things the first time but eventually – you just don’t care and move on mentally. When you use a scooter…you automatically have your own seat at ball games and such. I’d trade to be normal ANY DAY but…it is what it is. A problem I have found is for outside events like ballgames and concerts, they very seldom provide an accessible porta potty that I can just roll into. That can makes things kinda tough. Take care!

      • Mo says:

        Hi Raph
        I have LGMD 2B. I was wondering if I could get some info from you of how you have been able to stay active so long.

        • Ralph Yaniz says:

          Mo, thank you for your email. It is important to understand that there are differences between all the limb girdle muscular dystrophies. I have LGMD2L. I think for my subtype, individuals can usually go into later years maintaining their ability to walk. Other subtypes are different. For my type I’m probably about average. We are all different. I wish you the best.

    • Ralph Yaniz says:

      I think you are right. At least at this point if it’s not too heavy I can lift it myself. It puts a bit of pressure on my hyperextended knees but I can do it. I also am not sure I can wheel myself with my arms and shoulders losing some strength. So electric power is good 😊 Thank you so much for comments.

  2. Ann Dolbier says:

    Your comment about no eye contact is so true. When I did my stint in a wheelchair I found the world happens somewhere over your head.

  3. Rameshan Kannoth says:

    Hi
    That sounded like a fantastic adventure. That you were able to enjoy the game without any hassles is a very happy feeling.

    Access for differently abled is still an issue in west. Our system in India far poor w.r.t this. People trying level best improve situation. Hope things turn out better ASAP.

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