Why those of us with FSHD feel like we’re always in transition

During a recent facioscapulohumeral muscular dystrophy (FSHD) wellness group meeting via Zoom, we each shared how we were feeling about our disease journey. One participant said, “I feel like I’m always in transition.” I can relate to that.

With FSHD, the need to adapt seems never-ending, a topic that has frequented my thoughts over the last few months. I thought about jokingly asking if folks were interested in joining a new organization called the Adaptation of the Month Club. There is no such organization, but I’d join if there were.

In my case, as soon as I modify a particular task to make it easier for me, it seems like I lose a little more function. As a result, I’m forced to figure out yet another adaptation.

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I’ve had FSHD for well over 50 years. I first noticed the symptoms when I was just 9 years old. I was diagnosed five years later, at 14. I’m now 67.

For decades, I was fortunate that my disease progression was slow. Things would be stable for long periods of time, and then I’d notice some changes. For example, my left arm might not reach as high as it used to, so I’d figure out another way to do an overhead task. It’s amazing how many ways there are to prop up your arm if necessary.

My family and I also employed some minor adaptations, such as rearranging items in the kitchen cabinets or lowering the shelves. I used a hall tree for years to hang up shirts, pants, and sweaters. At one point, we simply cut 4 inches off the bottom of the hall tree so that I could reach it.

Things would then stabilize, and my thoughts about FSHD were pushed to the background while my life went on.

A partial list of my work-arounds

When I was about 55, my FSHD progression sped up. It was around that time that I began to use a wheelchair whenever an outing involved a lot of walking. I also got my first walker, although I refused to use it. Because of my blindness, I found myself bouncing the walker off walls, door frames, and furniture. I then abandoned the walker and improved my furniture surfing skills.

This worked well for me until about a year ago, when my balance worsened and I began having frequent falls. It was a mental struggle, but I transitioned to using my walker again, this time full-time.

Over the past few months, my disease progression has accelerated again. Just standing up has become a challenge. Thicker cushions on the chairs helped for a while, but it became obvious that I needed a better solution.

I now have a lift chair in our living room and a sit-to-stand device on my new kitchen chair, which has arms that I can grasp while the device catapults me to a standing position.

As I’ve mentioned in a previous column, I’ve had a lot of difficulty getting eating utensils from my plate to my mouth. When I rotate my wrist and start moving the food up, my fingers stiffen and my wrist and forearm lock up, causing intense pain.

I’ve tried eating left-handed, but that hasn’t been very successful, either. So I’ve been forced to slow down the process, taking one or two bites, then laying down my fork or spoon and resting my arm. It takes a while longer to get through a meal, but it has reduced the pain.

As I move forward, I’ll probably be making some dietary changes, switching to foods that are easier for me to pick up and eat without using a fork or spoon.

My shoulders and upper arms are weakening. I’ve found myself unable to close the bottom drawers of my dresser after I retrieve an item of clothing. Instead, I now sit on the bed and brace myself, while I shove the drawer closed with my foot. It’s awkward, but it works and I’m less likely to fall.

I have an accessible bathroom, but it’s become a challenge to reach certain body parts when I take a shower. So I purchased a back scrubber that helps me do a better job of getting clean all over. I’ve also purchased large, lightweight towels that make the drying process a little easier.

It’s also time to cut a few more inches off that hall tree and find a new way to make a cup of coffee. I could go on, but you get the picture.

My occupational therapist has suggested I play less music, do less typing, and give my arm more rest, heat, and massages. That’s advice I’ll try to follow as best I can without giving up even more ground to my FSHD.

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.