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 facioscapulohumeral muscular dystrophy (FSHD) for over 50 years.

I knew something was wrong around age 10. When I tried to exercise to get stronger, I noticed I could bench press some weight, but if I stood up and tried to lift the bar overhead, even without any weight on it, I couldn’t make my left arm go straight. I didn’t find out what the problem was until I was 14.

In ninth grade, a counselor from the Pennsylvania Office of Vocational Rehabilitation came to class one day and passed around some paper to all the students. He asked us to write down anything we couldn’t do, so I jotted down that I couldn’t raise my arms over my head. I found myself in the guidance office the following day to demonstrate, and was soon referred to a doctor.

After an electromyography test documented the weakness in my left shoulder and scapula, a muscle biopsy confirmed the muscular dystrophy diagnosis. It was a relief to put a name to the problem, but I hid my FSHD from everyone. I didn’t want to be different. Who does at 14?

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Starting a family

I met my wife, Wendy, in college. We graduated with degrees in special education, got married, bought a house, and started our careers. I played in a band on the weekends and painted houses in the summers. Life was good! Muscular dystrophy was shoved to the back of my mind.

Despite knowing that there was a possibility that our kids could inherit the disease, Wendy and I decided to move forward with having children. I thought that if it was just a matter of a winged scapula and weak shoulder, there were far worse things I could pass on to my kids.

Wendy and I were blessed with three children and quickly settled into parenthood. Wendy quit her teaching job and started a day care in our home. I continued teaching, painting, playing music, and ignoring my FSHD. Life was good!

A life-changing accident

While returning home from playing music at a 50th anniversary party on a Sunday evening in 1989, I was hit head-on by a drunk driver. My injuries included a compressed skull fracture, blindness, a crushed face, a broken neck, multiple leg fractures, and crushed knees. My doctors informed Wendy that I was either going to die or be a “vegetable.”

Seven weeks of multiple surgeries in the hospital were followed by three months in a rehabilitation center, where I learned to walk again. My physical therapist noticed I had weakness in my right hip that didn’t seem to be related to the accident damage. Little did I know that the next phase of my FSHD struggle had started.

My hip gave me a lot of pain as I learned to use a mobility cane and function as a blind person. Short distances weren’t a problem, but it was torture when we took the kids to an amusement park or for a hike. I took my physiatrist’s advice: I walked only when I had to and found a place to sit every chance I got. It wasn’t pretty, but Wendy and I made it work, bringing up our kids as normally as possible.

Over time, the pain worsened. I had back surgery, but it didn’t help. Most people assumed that my mobility problems were due to the car accident. I still hadn’t mentioned the FSHD.

Opening up about FSHD

In my mid-50s, I finally came clean and started to tell people that my physical problems were increasingly due to muscular dystrophy. It was hard to tell people that I had a muscle disease, as I’d always done my best to appear as “normal” as possible, but opening up was also a relief.

People started to ask questions. They wanted to understand. But as my disability became more apparent through my “Sherlock Holmes looking for clues” walk, I found it wasn’t necessary to explain myself. I started spending more time in a wheelchair — something I’d resisted because, as a blind person, I worried it would make me more dependent on others.

I couldn’t have been more wrong. I was totally surprised by how well my family and friends adjusted to the new me.

As I enter the “grandpa” stage of my life, I’ve learned to accept FSHD as part of who I am. There are some things I can no longer do, but life is still good, and I look forward to sharing it with all of you!

Note: Muscular Dystrophy News 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 or its parent company, BioNews, and are intended to spark discussion about issues pertaining to muscular dystrophy.