My Latest Wheelchair Woes May Soon Be Over

A year after I started fine-tuning the seating of my new wheelchair, I found myself back where it all started.

I wrote a few weeks ago about my continuing struggles with the chair. Since then, one of three programming problems has been solved. My seating appointment was meant to address some of the more pressing issues, but I wasn’t feeling very optimistic. I’ve been working on this chair on and off for over a year. We’ve certainly made progress! But not enough to quell my rising fear.

I had faith in my assistive technology professional (ATP). If anyone could come up with a solution, he was the one. But the dread remained. What if we couldn’t fix it? Would I be in pain for the foreseeable future?

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So you can imagine my emotional state when we arrived at the clinic and laid out our laundry list of to-do items. It only got worse when I transferred from my old chair to the new one. I hadn’t been in the chair for a few weeks. While I’d desperately needed the break, my time away made it harder for me to remember what needed to be done. I’d written it all down, but it’s difficult to communicate it, especially when you’re not sure what exactly is wrong.

We jumped from problem to problem for a couple hours, trying to get a handle on the scope of work. My ATP was in and out, leaving my dad and me to snipe at each other in an attempt to pass the time. Banter is our love language, and play fighting during seating appointments is a time-honored tradition. Between rounds, we worked to troubleshoot the different problems, trying to figure out what could be done.

Then I realized.

I’ve written previously about my decision to go with contoured seating. In essence, a mold of your body is taken so the backrest can be fitted to your exact measurements. It seemed like a good idea at the time! I stand by my choice. But it occurred to me at that moment that the contouring was the issue.

It wasn’t that I was in pain, although I was. It was that something felt off — something I couldn’t pinpoint, let alone describe. The lower half of my body was fine. It was my upper half that was causing the problem. My right shoulder blade was in pain, and my arms — all the way down to my fingers — were tingling, almost as if a nerve were pinched.

I’d noticed over time that my old chair had a smoother backrest, but I didn’t put two and two together until that appointment. I was so giddy that I laughed — aloud, in the middle of conversing with my ATP. When my dad shot me a weird look, all I said was, “It’s contoured!”

“Of course it is,” he replied.

“No, you don’t understand! The contouring is the issue!”

To clarify, I love the contoured seat. It’s like sitting on a cloud! But the backrest is too fitted to my profile. My shoulder pain, the tingling in my extremities, my issues with driving — it all made sense.

Once we figured that out, the solution became clear: Make a new backrest that’s more or less a duplicate of the old one. It is, of course, less than ideal. But it stands to address pretty much all the seating issues (knock on wood). At the very least, it gives us a place to start.

The next couple months are going to be busy. The goal was to be in the new chair full time by mid-June, in time for a trip to California. Realistically, that might not happen. But this is the most optimistic I’ve been about the new chair since, uh, this time last year.

For the first time in months, I’m seeing the light at the end of the tunnel.

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Note: SMA News Today 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 other 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 SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.