Still playing my tune with a little help from my friends

In my previous column, I shared my concern about losing more strength due to the progression of my facioscapulohumeral muscular dystrophy (FSHD). This loss was making it increasingly difficult for me to get out of my friend Richard’s Subaru.

Richard, who is also a musician, not only drives me to many of my musical performances but also adds percussion that truly enriches our sound. Entertaining at nursing homes and other senior facilities is a privilege I treasure, so the thought of losing Richard as both a driver and drummer was troubling.

I keep in touch with several friends who also live with disabilities. During a recent call with my friend Russ, who has multiple sclerosis, I mentioned my struggles getting out of Richard’s car. Russ recommended a car door handle assist device that he uses to help exit vehicles lower than his own truck or my minivan. His suggestion jogged my memory — I recalled this device being recommended during an FSHD Society Wellness Hour focused on adaptive “hacks” last year. At the time, I didn’t need such help, so the idea slipped my mind. Russ also suggested placing a cushion on the car seat to raise me a couple of inches.

I did some online research and discovered I could buy a 4-inch handle that fits into the door latch, or purchase a kit with additional assistive devices. These kits usually include the door latch handle, a second handle that hangs from the shoulder harness connection, and a two-handle device designed so Richard could help pull me out of the car seat while I pushed myself out.

I suspected the basic handle for the door latch would be most helpful, but since the kits were affordable, we purchased one that included all three devices.

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Adapt and adjust

When the kit arrived, I tested all three devices and quickly realized the door latch handle was the only one that truly helped me. Since I do much better pushing than pulling, I need to use both arms to lift myself to my feet, making the two-handle device impractical. The handle hanging from the shoulder harness connection was at shoulder height — useful for someone who prefers to pull, but not for a “pusher” like me.

Last week, Richard and I traveled to The Haven, one of my favorite venues. I brought along a 2-inch cushion for the car seat and the new door latch handle. While it wasn’t the most graceful process, it was much easier to get out of the Subaru.

I hope these adaptations will serve me well for a while. Honestly, I’m unsure how much longer I’ll be able to keep performing at nursing homes, as transferring between my wheelchair and the variously-sized piano benches is becoming increasingly challenging.

I now have a transport chair with fold-back arms. When the time comes, I hope to be able to wheel myself into position and play from the wheelchair. It will take some trial and error at each location, but that’s what all of us with disabilities do every day: adapt and adjust.

This experience has reinforced my belief that people with disabilities benefit greatly from connecting with one another. Without my conversation with Russ, I might never have remembered the door latch handle suggested during the FSHD hack session. Whether by phone, on Facebook, in forums, or through support groups, we can all gain from sharing our experiences and solutions. Others can also benefit when you share adaptations that have worked for you. We’re truly in this together, so let’s reach out and help each other however we can.

Note: Muscular Dystrophy 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 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 Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.