Well hello everyone, my name is Jim and I have been recently diagnosed with FSH muscular dystrophy. I guess I’ve had this form of muscular dystrophy since my 20s. When I started out in carpentry in my early 20s, I noticed I couldn’t hold my right arm over my head. I didn’t think much of it till I got into my later 20s when my shoulder blade on the right side started winging out. I went to many doctors through the years who thought I had nerve damage in my neck. It wasn’t until the last couple years I noticed my muscles in my upper body were getting much weaker. I was losing all my chest muscle, shoulder muscle, arm muscle, and I lost all of my core muscle. It wasn’t until I went into physical therapy for a strained elbow in my right arm, my physical therapist told me there was something definitely wrong with muscle wasting. I went to my doctor who then sent me to a neurologist who then sent me into multiple MRIs to find nothing. Now this is the point where I decided to make the change and go to Northwestern Hospital in Chicago. After one hour with one of their neurologists, I found out about FSH muscular dystrophy. After a few more months and multiple tests, a genetic test came back positive for FSHD. This is when it became real. I was told the FSHD was in my upper body, which I figured, but then I was told it was in my legs. I didn’t want to hear that, but I kind of had an idea due to difficulty I was noticing with stairs and biking. If you know me, you know I love to bicycle, kayak, hike and camp. This was a huge blow to my morale. I am still dealing with the diagnosis, making the best of it. I am still trying to swing a hammer and work as a carpenter the best I can. It seems to be getting harder and harder as the months go by. Lifting anything over my head is nearly impossible. Walking on the job site beats me up. I will keep on doing what I do as long as possible. I know the scientists are working on a cure. This is where I need your help. Please help by learning about this disease. I’m still learning about it everyday. I am also trying to get donations to go directly to the FSH Society to get this cure going. The sooner we FSHers get something to slow or stop the progression, the better we will be in the long run. That’s all I’m hoping for. Please read below to get some facts of FSHD. Thank you.
The money I'm raising by participating in this Walk & Roll is supporting programs and funding research that will directly impact patients and their families living with FSH Muscular Dystrophy (FSHD).
Facioscapulohumeral muscular dystrophy, or FSHD, is a genetic disorder that leads to the weakening of skeletal muscles. It affects an estimated 1 in 8,000 individuals. It affects everyone differently, but over 70 percent of patients experience debilitating pain and fatigue. There is no effective treatment or cure—but there is hope. I'm committed to making sure that no one faces this disease alone.
Please visit the FSH Society website (fshsociety.org) to learn more about FSHD, ways to get involved, and everything that is happening!
Thank you for your support! - Jim