Working Through the Process — Robin Stemple

An illustration of a blind man walking down a path with a cane. Floating musical notes follow him.

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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Columns

As my FSHD progression worsens, I’m battling feelings of shame

My facioscapulohumeral muscular dystrophy (FSHD) has progressed to the point where daily activities are increasingly challenging, and often impossible, to manage on my own. As a result, I now need more help than ever before. I know I’m doing the best I can. I exercise daily, hoping to keep…

Robin Stemple

Columns

Good to know that I can still handle living independently, sort of

Those who read my columns regularly will know that my last one was written just after my wife, Wendy, and my daughter, Jill, took off for a vacation in Croatia, Greece, and Slovenia. Over their two-week trip, we communicated by FaceTime a lot, and they seemed to be having…

Columns

Taking things one day at a time after FSHD sidelines me from fun

It’s been about an hour since the garage door closed and my wife, Wendy, and daughter, Jill, set off on what I hope will be an incredible adventure. They’re headed on a 15-day vacation to Slovenia, Croatia, and Greece, and I couldn’t be happier for them. So why am I…

Columns

Fighting the urge to lie down and stay down in life with FSHD

Every day is different with facioscapulohumeral muscular dystrophy (FSHD). As I wrote in a previous column, managing the condition is a balancing act. If I do too much, I’ll pay for it later. While some days are easier than others, each one is a struggle. I often wonder…

Columns

Some advice on reading facial expressions and body language

I recently talked with a friend about body language and facial expressions. She’d attended a public hearing where she ended up sitting just behind the main speaker. As the hearing progressed, she became certain she’d be seen on Zoom. That made her extremely conscious of her facial expressions and body…

Columns

What church congregations can do to make things more accessible

I was blessed to be able to provide music for the annual gathering of the United Church of Christ’s Penn West Conference earlier this month. Everything went well. My wife, Wendy, had plenty of help moving my equipment into the venue. The technical staff from PennWest California did…

Columns

To attend physical therapy or not? That is the question with MD

If you’ve been reading my column since I started writing for Muscular Dystrophy News Today, you know I recently moved to Pittsburgh from Shanksville, Pennsylvania. Over the past few years, as my facioscapulohumeral muscular dystrophy (FSHD) progressed, I tried physical therapy (PT) twice to regain strength.

Columns

Walking the tightrope, falling off, and getting back up again

Years of living with facioscapulohumeral muscular dystrophy (FSHD) have taught me that it’s a balancing act on a high wire. It’s an everyday challenge to keep from falling off one way or another. Overdo it and you spend a day or two paying the price with…

Columns

There’s milk all over the floor. Should I cry, laugh, or what?

It happened two weeks ago. Then it happened again yesterday. Is this my new normal? If so, what to do? Should I laugh? Should I cry? Is a little spilled milk worth getting upset? I’m an early riser, getting up each morning to say some prayers and read some meditations.

Columns

My unbroken spirit defines me, not things I can no longer do

Each of us dealing with facioscapulohumeral muscular dystrophy (FSHD) is on a slightly different trajectory. For some, the disease is a series of small losses that level out to a period of relative stability. For others, the disease is a steady, steep decline. For some, the disease remains confined…

Columns

The advantages of keeping an open mind when meeting a new doctor

Having just moved to Pittsburgh from rural Somerset County, Pennsylvania, one of the many things I had to attend to was finding a new primary care physician. Back in Somerset, there weren’t many choices. Around 2003, I started with a doctor who was fresh out of residency and didn’t…

Columns

How my perspective on FSHD changed over the years

As I start a new adventure writing for Muscular Dystrophy News Today, I’d say the first sentence is the hardest. I’m so glad I got that out of the way! I’ve joined the team at Bionews, the parent company of this site, to share my experience dealing with…


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