Now measuring my life in pounds, ounces, minutes, and seconds

In a recent column, I talked about paring down my music rig and retiring my accordion. Over the years, I’ve transitioned from a 120-bass professional accordion to a 32-bass student model that, while less than 15 pounds, is now too heavy for me to handle.

Because of my facioscapulohumeral muscular dystrophy (FSHD), my right bicep has shriveled up seemingly overnight, and I now struggle to pick up anything over a pound. The excellent-sounding, battery-powered speaker I recently purchased was only a few pounds heavier than the 9-pound version I’d been using for years to perform at senior facilities. Sadly, those extra pounds proved too much for me. I’m back to using the old speaker.

As it seems with everything, I’m now making decisions based on just a couple pounds or, in some cases, just a few ounces. And that’s just the start of it.

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FSHD progression requires me to lighten my music rig

Weight woes

My issues with everything feeling too heavy started with shoes. Sometime around 2018, when my son, Ryan, was planning his wedding, I started struggling to walk when I had shoes on my feet. That didn’t seem to be an issue when I moved around my home wearing my bedroom slippers.

Just before Ryan’s wedding, I found a pair of extremely lightweight, black running shoes that worked well for me. They were dressy enough to wear with my suit and tie for the ceremony, and I’ve worn them ever since.

Seven years later, they’re no longer acceptable for church and other dress occasions, so I’m now hunting for shoes that look good enough to wear to church but weigh almost nothing. That’s been a challenge.

I’m even bothered by forks and spoons that feel just a little too heavy. My daughter-in-law spotted some especially lightweight silverware online and was kind enough to order a set and have them sent to my house. Getting food from my plate to my mouth continues to be a problem, but the lighter utensils help, even though there’s no more than an ounce or two difference from the ones that seemed too heavy.

An inch at a time

I’ve also been discovering that a few inches can make a big difference for me.

Over the past few months, I’ve been increasingly challenged when standing up from a seated position. My daughter, Jill, and Ryan put “feet” under my living room recliner. The extra 4 inches did indeed make it easier to stand up, but my muscles have continued to fade.

Two weeks ago, after four months of wrangling with my insurance provider, we took delivery of a lift chair to replace my recliner. I hate that I need a lift chair, but it’s been a huge help to me already.

A church friend was kind enough to build a platform to raise my recumbent exercise bike about 5 inches. That’s allowed me to get back to the bike for exercise.

I replaced the 1-inch cushion on my kitchen chair with a 2½-inch version, but it’s still an incredible struggle to stand when I’ve finished eating. I’m now experimenting with a spring-loaded “sit-to-stand” device that literally pushes me up as I lean forward and begin to stand. It’s not working for me at this point, though. As it pushes me up, it also throws me off balance. Since balance is already an issue for me, using the device is a work in progress.

A stitch in time

Time has also become something I’ve had to consider in new ways.

I’ve been able to maneuver around our kitchen for the 50 or so minutes it takes to make a cup of coffee, microwave my lunch, and more. More and more often, however, I find myself sitting down for a short break in the middle of those tasks.

Last year, my physical therapist measured how long I could balance independently. At that time, I could balance for about 20 seconds without holding onto anything. Now, I doubt that I can balance for those 20 seconds. The simple process of pulling my pants up is now often interrupted as I put a supporting hand on the bed or reach for a grab bar in my bathroom.

Pounds, ounces, minutes, or seconds: When did these become the way I measure my life?

Weight and time are funny concepts. Most people, unless they’re trying to pick up a refrigerator or something else that’s perceived as heavy for everyone, seldom think about what an object weighs. They just pick it up. I’m now thinking about pounds and ounces constantly.

At the same time, most people acknowledge that time is flexible. A single day can seem to drag on for an eternity. Ten years can appear to pass in the blink of an eye. Because of my FSHD, I don’t think about days or years much. It’s come down to minutes and seconds.

I’ve just started another round of physical therapy. I’m hoping to turn things around and regain some strength and balance. I think it’s going to be an uphill battle, but I’m giving it my best shot!

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.