It started with shoes, but now everything is too heavy

One thing I was born with, aside from my facioscapulohumeral muscular dystrophy (FSHD), was narrow feet. As part of a working-class family, where money always seemed to be in short supply, my feet became an added expense that my mom combated by being a thrifty shopper. If she saw shoes on sale that I’d eventually grow into, she’d buy them and stash them in the closet for future use.

As an adult, I carried on this thrifty shopper heritage. Anytime I saw bargain-priced shoes in my size, I’d buy them and stash them in my closet. This habit worked well until seven years ago, when all of my shoes suddenly felt like cement blocks on my feet. One pair at a time, I pulled them out of the closet and walked around a bit while wearing them. And one pair at a time, they went to Goodwill or the Salvation Army.

Eventually, I found a pair of black running shoes that weighed only a few ounces. They’re still the only shoes I wear. When my wife, Wendy, eventually declares them unfit for church and the like, I hope I can find a similar shoe.

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My collection of coats was the next thing to go. I spent most of my adult life in Shanksville, in the western Pennsylvania mountains, where winters can be cold. I started to struggle to get my arms into the sleeves of any of my jackets and then pull them over my winging shoulder blades. The coats also felt really heavy.

I found a lightweight jacket with a silky lining that made it easier to get on. I passed along several nice winter coats to the above-mentioned charities.

Two years ago, I started struggling to get put on even a light jacket. A friend from an FSHD Society wellness group noted that she’d switched to a vest instead of a jacket. I bought a vest and found it a lot easier to don. When we recently had low temperatures here in Pittsburgh, where I now live, I just stayed in the house.

Unfortunately, the trend of everything becoming too heavy for me to handle has continued. In a previous column, I talked about the challenges of picking up my coffee mug when it’s full. I haven’t been able to find a lighter option, so for the moment, I’m getting by with a two-handed approach to drinking.

At my last dental checkup, my hygienist suggested I consider switching to an electric toothbrush when I told her I was struggling to keep my arm up and the toothbrush moving when I brush my teeth. I made the switch. It’s helped a bit since I don’t need to move the toothbrush up and down, but I’m still struggling to hold my arm up while I brush. I’m now experimenting with using my left arm as well as my dominant right arm to brush my teeth. It’s sloppier, but it works.

At a recent wellness group meeting, a member asked where to find lightweight towels and washcloths. I thought I was the only one who was struggling with the weight of these, but the ensuing discussion made me realize that it’s a challenge for many in the group. I now use our most worn-out towels and the cheapest washcloths Wendy can find. It’s still a struggle to wash, and I confess that many times, I find it easier to simply sit and let my body air-dry after a visit to my walk-in shower.

I’ve also discussed how I once struggled to hold on to a dishwashing job. I now wash a few pots and pans at home, but I have to ask Wendy or my daughter, Jill, to rinse them. I can’t pick them up and manipulate them for a proper rinse. It wounds my pride to have to ask for this kind of help.

Eating utensils are my latest challenge. Jill recently bought some forks to add to our everyday silverware collection. She likes chunky, sturdy silverware and loves those new forks. I find them way too heavy for me to use. I’m now digging around the silverware drawer to find our older and lighter forks.

I have to wonder what’s going to be too much for me moving forward. Will it be my comb, my pants, or my shirts? I’ll be happy to wait a while to find out, but I know that more FSHD challenges lie ahead. Here’s hoping that I and all of my fellow “FSHDers” are up to the challenge.

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.