Pivot

by Larry Chase

Those of us who live with FSHD must “pivot” our world constantly. Pivot—the buzz word for what we all are going through and continue to experience, just like when you have “FSHD days” when it seems like there is no relief.

My wife, our dog Zip, and I frequent a popular dog park.  I love to walk in this open space. The dogs give me strength. No judgement. Many other dog owners come to this park and we have become a good support for one another. Despite our differences, the dogs help us to communicate. How are you?  Good to see you!  Many will step off the path to really have an impact.

One day, a woman was crossing over the open space and seemed like she wanted to speak to us. “I just wanted to tell you what an inspiration you are. I see you all the time at the dog park, and you inspire me. I see you both together and I get inspired just by seeing you.”

“Thank You” I say, “The dogs give me energy.” She has no idea about my struggles and what is going on with me. She just sees me here and it uplifts her, which in turn strengthens me.

I am 63 years old and was clinically diagnosed with FSHD in 2004 at age 47. In 2007 I had a DNA test which confirmed the diagnosis. I was built like my dad.  I believe dad had FSHD. He was having trouble raising his arms above his head as he got older and made the excuse that all the years of being an electrician caused this weakness.  He also had winged scapula, but back then doctors were not aware of this disease.

Like many who have been athletes, I passed my competitiveness onto my children who both played college sports. I think if you have that competitive mindset, you can tolerate the pain and the fatigue that FSHD spreads throughout the body. Athletes know they need to rest to regain strength.

I was extremely fortunate to have a primary care doctor who started questing for answers for me and sent me in 2004 to UC Health Colorado which at the time confirmed the diagnosis and basically advised, “exercise, but not too much.”  The doctor told us point blank that this disease is debilitating but not life threatening.  That’s it? Oh okay…. My wife and I returned home to take it all in.

In 2004, our children were 18 and 14 years old.  We never had our children tested, due to years of worry that insurance companies would deny coverage for preexisting conditions, which would haunt them for the rest of their lives. We watched and kept an eye out for any “winging” in their shoulder blades. No signs, and both children, now adults and married, have gone through genetic testing before pregnancy and neither are carriers. We’re happy for that!

Through the years, I felt like I lived in the “closet” with FSHD. Family members were not really informed about it. We did not want to worry anyone. Friends and coworkers did not understand.  Fifteen years ago, all that people knew about muscular dystrophy was through the Jerry Lewis Telethon which showed children with Duchenne muscular dystrophy, a terrible, fatal condition that was different from FSHD. And who can forget the firefighters and the fundraiser, Boot Donation? And then there are times when I did explain what is going on with my body, and I would get a reply, “yes, my brother has MS.” It’s all so complicated.

Currently I am a patient at UC Health Colorado, which is one of four sites recently named to join the FSHD Clinical Trial Research Network, dedicated to finding treatments for FSHD. I see my neurologist every year, to check in. We are all in and supporting their work to find a treatment.

The years have passed and I am showing weakness in my legs and arms. I currently wear AFOs and always use walking sticks and promote their use to others. The walking sticks have encouraged me to continue to “spark” the remaining muscles in my knee, calf, and ankle in hopes that I won’t lose them before we can get a treatment for FSHD. A cure would be AMAZING.  My life has changed where I do need assistance at times and I’m thankful my wife is there when I tumble.

My advice, stay active, find a hobby, be positive, and always “Pivot.”