I was tempted to do a play on the show “America’s Got Talent” and title this column “FSHDers got talent,” but I knew the improper grammar wouldn’t get past my excellent editors. That being said, after participating in a recent FSHD Society wellness group session, I know that my fellow…
When I was 13 and my brother, Tim, was 16, we got skis for Christmas. I’m not sure why Mom and Dad decided to get them for us. Jeannette High School, my alma mater, had a ski club, but Tim and I weren’t members. I don’t recall asking for skis.
I’ve played music since I was 5 years old. My first professional playing job was as an accordionist in a Polish polka band when I was 13. My accordion at the time was a full-size Excelsior 120 bass model that weighed about 35 pounds. My professional playing career took a…
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…
About a month ago, I came home from playing with my church’s music group at a nursing facility. We played a doubleheader, doing a set in the memory care wing, then another in the personal care area. Because of my facioscapulohumeral muscular dystrophy (FSHD), I’ve stopped doing back-to-back…
Many times over the years since the 1989 car crash that nearly killed me, I’ve been asked if I had any near-death or out-of-body experiences while I hung between life and death. I always try to clarify what people mean by these terms. If we’re talking about my spirit…
Facioscapulohumeral muscular dystrophy (FSHD) primarily affects muscles in the face, scapular region, and upper arms, hence the name. Progression is different for everybody, but the condition can eventually affect most, if not all, muscles in the body. As an additional “bonus,” FSHD also can cause nerve deafness, a condition…
My wife, Wendy, and I had a wonderful Sunday recently. We rose early and hit the road to Shanksville, Pennsylvania, where we had lived for over 41 years before moving to Pittsburgh to be closer to our kids and grandkids. I’d agreed to play for the 10:30 a.m. service at…
I’m getting more comfortable using my walker. However, it just doesn’t pay to trust the darned thing. The other day in my bedroom, I was putting clothes away. I was planning to take a shower later in the day, so I thought I’d save myself some steps. I grabbed…
I’m currently continuing to do the exercises my physical therapist recommended during my last therapy session. However, it hasn’t been stopping the progression of my facioscapulohumeral muscular dystrophy (FSHD). While I’m hoping the exercises are slowing the progression down, it seems like it gets harder every day for me…
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