FSHD progression requires me to lighten my music rig
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…
Working Through the Process — Robin Stemple
Rob Stemple is a lifelong advocate for people with disabilities. He was diagnosed with FSHD in 1971 at age 14. Rob struggled with its’ affects for over 50 years. He lost his eyesight in a devastating crash with a drunk driver. Rob has been a special education teacher, director of a nonprofit organization serving the blind and a newspaper columnist. He lives in Pittsburgh with his wife, Wendy, where they both enjoy hanging out with their kids and grandkids. Rob is a musician, composer, and recording artist. His theory of life is, “Do the best you can with what you’ve got to work with!”
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My disease progression feels like barreling down a hill with no brakes
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,…
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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…
Another fall left me feeling like an upside-down turtle
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…
How my FSHD progression leads to out-of-body experiences
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…
Even with hearing aids, I still have difficulty in group settings
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,…
I’ll continue to do what I love, despite the FSHD ‘hangovers’
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…
A walker should help prevent falls, right?
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…
I always try to pause to appreciate the small victories
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…
My trip to the Idlewild amusement park was wild, but worth it
Idlewild, which is near Ligonier, Pennsylvania, is an old-style amusement park that’s been around since the days when the gentry from Pittsburgh took the train to their summer homes in the foothills…
An emergency preparedness plan is crucial for those with disabilities
As Western Pennsylvania natives, my wife, Wendy, and I are both Steelers fans. Naturally, when the Steelers played the Dallas Cowboys a couple weeks ago, we tuned in. If you’re not a football fan,…
Examples of ableism I’ve encountered in life with FSHD
I’ve been disabled for over 50 years, and I spent over 30 years working with people with disabilities. The language surrounding disability has evolved in that time. For the most part, that’s a good…
