Wednesday, May 14, 2014

Living with FSHD. Twenty-something and changing.

After years of denial or hoping FSHD would simply go away, I feel it is important to share my story now. I started by telling you my experiences of living with FSHD during my teen years. Now I want to share the next decade with you.

I read stories all the time from people who are in their twenties and are really starting to notice changes in their muscles. For me, my twenties were fairly normal. I was noticing some weakness in my shoulder muscles, but I was able to function as a normal adult. I was more concerned with making a living and supporting my new family than worrying about FSHD.

I was lucky that my maternal Uncle and Grandfather both were affected by FSHD (even though we didn't know what it was called back then). I did spend a lot of time going to Doctors to find out what I actually had. I figured if we can find out what was causing this, we can fix it...right? Wrong! After going to many Doctors and Chiropractors, I finally was sent to the MDA clinic for several rounds of neurological tests. It was not a good feeling to have Doctors call other Doctors in to look at you because they had never seen anything like this. I was obviously a freak of nature, or at least I felt like one.

Remember, this all occurred in the 1980's. The FSH Society was not even founded yet. The MDA clinic was the only resource for people like me. Doctors at that time knew very little about FSHD, its symptoms or its causes. But finally, after many painful tests, they were able to tell me I had a form of muscular dystrophy, sent me home with a bunch of literature and wished me the best. Basically that was all they could do. At least I knew what I had...right? At least I had a family history, so I knew I was not going to shrivel up and die right away. But I was still scared.

So my twenties were spent worrying about other things, once I learned I had muscular dystrophy and there was nothing anyone could do to fix me. I worked, played with my new daughter, enjoyed my twenties and tried not to worry about the future. I played music, started to learn the guitar and was a drummer in a Country band. I had learned how to hide my symptoms from others. At least at this point in my life I could hide the fact that I was a freak of nature. I was finally able to tell my family that what my Grandpa, Uncle and I have is a form of muscular dystrophy. At least I found that out in my twenties.

So like I wrote earlier, my twenties were spent growing up, trying to be a normal adult and learning to be a Father. I was lucky I had an Uncle 12 years older than me so I could at least gauge what I would be dealing with in the future. I knew that sometime down the road, my life would change. But until then, I had a life to live.

I hope you enjoy my writing about my life with FSHD. Feel free to drop me a line sometime at

Love and peace,


My favorite Songwriter Joel Shewmake

Quote of the year...

“Be not the judges of men, but love your brothers and sisters, and find ways to reach out to them in common goals and aspirations. Where there is love in common, the divisions of creed will melt away and reveal the true nature of man’s eternal destiny -- one of unity in purpose, to be perfect as the Father is perfect."

Author Brilliant but Unknown

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